Health and Social Development, Faculty of (Okanagan)
Health and Exercise Sciences, School of (Okanagan)
DSpace
UBCO
McKay, Rhyann
Doctor of Philosophy - PhD
University of British Columbia
Family, partners, and friends often support people with spinal cord injury (SCI) to manage the physiological changes and secondary conditions related to the injury and address environmental and social barriers. While this support is associated with a multitude of benefits for people with SCI and those that provide support, research also suggests that family support providers experience higher rates poor mental health and burden than their non-support providing counterparts. Despite these findings, few interventions exist to support this population. This dissertation aimed to co-develop a behaviour change intervention for family support providers of people with SCI using an Integrated Knowledge Translation approach and the Behaviour Change Wheel (BCW). The four dissertation studies followed a systematic and stepwise approach in partnership with three Canadian provincial SCI community-based organizations. First, a scoping review guided by the BCW was conducted to develop a theoretical understanding of behaviours impacted by the SCI family support provider role. Second, a qualitative interview study was conducted guided by the Theoretical Domains Framework to identify outcomes, affected behaviours, and factors influencing behaviours. Third, findings from the first two studies were synthesized using the BCW to co-develop the standard of practice for an intervention to promote leisure time activity among family support providers of people with SCI. The standard of practice was co-developed in partnership with experts including the community-based organization partners. Finally, the acceptability and preliminary efficacy of the resulting intervention, which integrated Brief Action Planning and Brief Cognitive Reframing, was examined in a feasibility study using a single subject, pretest-posttest study design. The findings of this dissertation highlighted that many behaviours are impacted by the family support provider role, including leisure time activities. Leisure time activity is influenced by family support providers’ physical and social environment and motivational factors, including emotions, beliefs about outcomes, and intentions. A theory-based intervention that adopts a person-centred approach showed promise in addressing these barriers to leisure time activity. The co-development and examination of this behaviour change intervention addresses a critical gap in the literature and may support the development of urgently needed resources for family support providers of people with SCI.
THE CO-DEVELOPMENT OF A THEORY-BASED BEHAVIOUR CHANGE INTERVENTION TO PROMOTE LEISURE TIME ACTIVITY AMONG FAMILY SUPPORT PROVIDERS OF PEOPLE WITH SPINAL CORD INJURY by Rhyann Catherine McKay B.HK., University of British Columbia Okanagan, 2016 A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE COLLEGE OF GRADUATE STUDIES (Kinesiology) THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) November 2021 © Rhyann C. McKay, 2021 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: The Co-Development of Theory-Based Behaviour Change Intervention to Promote Leisure Time Activity in Family Support Providers of People with Spinal Cord Injury submitted by Rhyann C. McKay in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Kinesiology Examining Committee: Dr. Heather Gainforth Supervisor Dr. Kathleen Martin-Ginis Supervisory Committee Member Dr. Mary Jung Supervisory Committee Member Dr. Sylvie Lambert External Examiner Dr. Linda Li University Examiner iii Abstract Family, partners, and friends often support people with spinal cord injury (SCI) to manage the physiological changes and secondary conditions related to the injury and address environmental and social barriers. While this support is associated with a multitude of benefits for people with SCI and those that provide support, research also suggests that family support providers experience higher rates poor mental health and burden than their non-support providing counterparts. Despite these findings, few interventions exist to support this population. This dissertation aimed to co-develop a behaviour change intervention for family support providers of people with SCI using an Integrated Knowledge Translation approach and the Behaviour Change Wheel (BCW). The four dissertation studies followed a systematic and stepwise approach in partnership with three Canadian provincial SCI community-based organizations. First, a scoping review guided by the BCW was conducted to develop a theoretical understanding of behaviours impacted by the SCI family support provider role. Second, a qualitative interview study was conducted guided by the Theoretical Domains Framework to identify outcomes, affected behaviours, and factors influencing behaviours. Third, findings from the first two studies were synthesized using the BCW to co-develop the standard of practice for an intervention to promote leisure time activity among family support providers of people with SCI. The standard of practice was co-developed in partnership with experts including the community-based organization partners. Finally, the acceptability and preliminary efficacy of the resulting intervention, which integrated Brief Action Planning and Brief Cognitive Reframing, was examined in a feasibility study using a single subject, pretest-posttest study design. The findings of this dissertation highlighted that many behaviours are impacted by the family support provider role, including leisure time activities. Leisure time activity is influenced by family iv support providers’ physical and social environment and motivational factors, including emotions, beliefs about outcomes, and intentions. A theory-based intervention that adopts a person-centred approach showed promise in addressing these barriers to leisure time activity. The co-development and examination of this behaviour change intervention addresses a critical gap in the literature and may support the development of urgently needed resources for family support providers of people with SCI. v Lay Summary Family members, partners and friends often provide emotional and practical support to people with spinal cord injury (SCI). Research suggests family support providers experience poorer mental health and greater burden than their non-support provider counterparts. However, few interventions exist to support this population. Therefore, this dissertation aimed to systematically co-develop a behaviour change intervention for family support providers of people with SCI. A scoping review of the literature, a qualitative interview study, a summary of the co-development process, and a pretest-posttest feasibility study were conducted to achieve this aim. In sum, many behaviours are impacted by the family support provider role, and leisure time activity is among the most commonly described. Leisure time activity appears to be influenced by family support providers' physical and social environment and individual-level motivational barriers. The co-developed intervention which applied problem-solving, goal-setting, and reframing strategies showed promise in addressing these barriers. vi Preface I declare that the composition of this thesis in its entirety is my own. In the case of co-authored work, all sources have been acknowledged, and contributions to each study are outlined below. All experimental chapters in this thesis were approved by the research ethics board of the University of British Columbia (Okanagan). Chapter 2: (Study 1) McKay, R. C., Wuerstl, K. R., Casemore, S., Clarke, T. Y., McBride, C. B., & Gainforth, H. L. (2020). Guidance for behavioural interventions aiming to support family support providers of people with spinal cord injury: A scoping review. In Social Science and Medicine (Vol. 246). https://doi.org/10.1016/j.socscimed.2019.112456 R.C. McKay’s role in study 1: • Co-developed scoping review search and methods • Conducted systematic search and study selection • Completed data extraction and charting • Primary author of the manuscript, drafted the manuscript, and provided revisions Co-authors role in Study 1 • HG provided guidance and supervision for all stages of the research • KRW assisted with screening articles, data extraction, and charting • HG, SC, TYC, and CBM assisted with developing the research question, methods, and interpretation of results • HG, KRW, SC, TYC, and CBM revised and approved the final version of the manuscript before submission to Social Science and Medicine vii Chapter 3 (Study 2) R.C. McKay, V.E.M. Lucci, Casemore, S., Clarke, T. Y., McBride, C. B., & Gainforth, H. L. A Theory-Based Exploration of the Experiences of Family Support Providers of People with Spinal Cord Injury using the Theoretical Domains Framework and Behaviour Change Wheel. Prepared to be submitted to Disability and Rehabilitation. R.C. McKay’s role in Study 2: • Co-developed the research question and study methods • Conducted all data extraction and analyses • Primary author of the research chapter Co-authors role in Study 2 • HG provided guidance and supervision for all stages of the research • VEM assisted with data extraction and coding • SC, TYC, and CBM assisted with recruitment for the study • HG, VEM, SC, TYC, and CBM assisted with developing the research question, methods, and interpretation of results Ethics Approval: This study protocol was approved by The University of British Columbia Okanagan Research Services Behavioural Research Ethics Board (BREB H17-02308). viii Chapter 4 (Study 3) R.C. McKay, S.R. Locke, S.N. Sweet, Casemore, S., Clarke, T. Y., McBride, C. B., & Gainforth, H. L. Co-designing a theory-based intervention to promote leisure time activities among family support providers of people with spinal cord injury: Applying reporting guidance to describe the co-design process. Prepared to be submitted to Translational Behavioural Medicine. R.C. McKay’s role in Study 3: • Co-developed the research question and study methods • Conducted all data extraction and analyses • Primary author of the research chapter Co-authors role in Study 3 • HG provided guidance and supervision for all stages of the research • HG, SRL, SNS, SC, TYC, and CBM assisted with developing the research question and methods Ethics Approval: This study protocol was approved by The University of British Columbia Okanagan Research Services Behavioural Research Ethics Board (BREB H19-02690). ix Chapter 5 (Study 4) R.C. McKay, S.R. Locke, S.N., Walton, G., Shwed, A., Sweet, Casemore, S., Clarke, T. Y., McBride, C. B., Davis, C., & Gainforth, H. L. Investigating a Co-Designed Brief Action Planning and Brief Reframing Intervention to Promote Leisure Time Activities Among Family Support Providers of People with Spinal Cord Injury. Prepared to be submitted to Rehabilitation Psychology. R.C. McKay’s role in Study 4: • Co-developed the research question and study methods • Conducted all data collection and analyses • Primary author of the research chapter Co-authors role in Study 4 • HG provided guidance and supervision for all stages of the research • SRL, AS, and GW assisted with data analysis • HG, SRL, SNS, SC, TYC, CB, and CD assisted with developing the research question and methods Ethics Approval: This study protocol was approved by The University of British Columbia Okanagan Research Services Behavioural Research Ethics Board (BREB H19-03488). x Table of Contents Abstract ......................................................................................................................................... iii Lay Summary .................................................................................................................................v Preface ........................................................................................................................................... vi Table of Contents ...........................................................................................................................x List of Tables ............................................................................................................................ xviii List of Figures ............................................................................................................................. xix List of Abbreviations ...................................................................................................................xx Acknowledgements .................................................................................................................... xxi Dedication ................................................................................................................................. xxiii Introduction ................................................................................................................1 1.1 The Role Caregivers for People with Spinal Cord Injury ............................................... 1 1.2 The Impact of Providing Support ................................................................................... 4 1.3 Models to Understand Caregiving .................................................................................. 6 1.4 Existing Support for SCI Caregivers .............................................................................. 7 1.5 The Importance of Theory in Intervention Development ............................................... 8 1.6 Scaling Interventions and Trial Design ......................................................................... 12 1.7 Knowledge Translation ................................................................................................. 14 1.8 Integrated Knowledge Translation ................................................................................ 16 1.9 Purpose .......................................................................................................................... 18 1.10 Overall Research Design ............................................................................................... 19 Guidance for Behavioural Interventions Aiming to Support Family Support Providers of People with Spinal Cord Injury: A Scoping Review ...........................................23 xi 2.1 Overview ....................................................................................................................... 23 2.1.1 Purpose ...................................................................................................................... 28 2.2 Methods......................................................................................................................... 29 2.2.1 Design ....................................................................................................................... 29 2.2.2 Search Strategy and Screening .................................................................................. 29 2.2.3 Data Extraction and Analyses ................................................................................... 30 2.2.4 Reliability .................................................................................................................. 31 2.2.5 Network Analysis...................................................................................................... 31 2.3 Results ........................................................................................................................... 32 2.3.1 Search Results and Included Studies ........................................................................ 32 2.3.2 Stage 1: Understand the Behaviour ........................................................................... 33 2.3.3 Stage 2 and 3: Identify Intervention Options and Content ....................................... 35 2.3.4 Identify Evaluation Methods..................................................................................... 36 2.3.5 Network Analysis...................................................................................................... 37 2.4 Discussion ..................................................................................................................... 37 2.4.1 Stage 1: Understand the Behaviour ........................................................................... 38 2.4.2 Stage 2 and 3: Identify Intervention Content and Implementation Options ............. 40 2.4.3 Identify Evaluation Methods..................................................................................... 41 2.4.4 Strengths and Limitations ......................................................................................... 42 2.4.5 Future Research ........................................................................................................ 44 2.5 Conclusion .................................................................................................................... 44 xii A Theory-Based Exploration of the Experiences of Family Support Providers of People with Spinal Cord Injury using the Theoretical Domains Framework and Behaviour Change Wheel...............................................................................................................................47 3.1 Overview ....................................................................................................................... 47 3.2 Methods......................................................................................................................... 50 3.2.1 Methodological Approach ........................................................................................ 50 3.2.2 Philosophical Assumptions ....................................................................................... 50 3.2.3 Procedures ................................................................................................................. 51 3.2.4 Interview Guide ........................................................................................................ 53 3.2.5 Data Analysis ............................................................................................................ 54 3.2.6 Research Quality ....................................................................................................... 56 3.3 Results ........................................................................................................................... 58 3.3.1 Participant Demographics ......................................................................................... 58 3.3.2 Stage 1: Understand the Behaviour ........................................................................... 58 3.3.3 Stage 2 and 3: Identify Intervention and Implementation Options ........................... 65 3.4 Discussion ..................................................................................................................... 67 3.4.1 Stage 1: Understanding the Behaviour ..................................................................... 68 3.4.2 Stage 2 and 3: Identify Intervention and Implementation Options ........................... 71 3.4.3 Recommendations for Intervention Development .................................................... 71 3.4.4 Strengths and Limitations ......................................................................................... 72 3.5 Conclusion .................................................................................................................... 73 xiii Co-Designing A Theory-Based Intervention to Promote Leisure Time Activities Among Family Support Providers Of People With Spinal Cord Injury: Applying Reporting Guidance To Describe The Co-Design Process .........................................................................84 4.1 Overview ....................................................................................................................... 84 4.2 Methods......................................................................................................................... 87 4.2.1 Design ....................................................................................................................... 87 4.2.2 Selecting Reporting Criteria to Describe the Intervention Design and Standard of Practice .................................................................................................................................. 87 4.3 Results ........................................................................................................................... 88 4.3.1 Intervention Context, Purpose, and Population (GUIDED Items 1, 2 and 3) ........... 88 4.3.2 Development Approach, Data Sources, and Theoretical Rationale (GUIDED Items 4, 5, and 6). ........................................................................................................................... 89 4.3.3 Decisional Priorities, Stakeholder Contributions and Modifications (GUIDED Items 8, 9, and 10) .......................................................................................................................... 92 4.3.4 Iterations and Future Considerations (GUIDED Items 11 and 12) ........................... 93 4.3.5 Summary of the Developed Intervention (GUIDED Item 13) .................................. 94 4.4 Discussion ..................................................................................................................... 94 4.4.1 Recommendations for Reporting .............................................................................. 96 4.5 Conclusion .................................................................................................................... 97 Investigating a Co-Designed Brief Action Planning and Brief Reframing Intervention to Promote Leisure Time Activities Among Family Support Providers of People with Spinal Cord Injury: A Feasibility Study .............................................................104 5.1 Overview ..................................................................................................................... 104 xiv 5.2 Methods....................................................................................................................... 107 5.2.1 Design ..................................................................................................................... 107 5.2.2 Participants .............................................................................................................. 107 5.2.3 Procedures ............................................................................................................... 108 5.2.4 Measures and Materials .......................................................................................... 109 5.2.5 Analysis................................................................................................................... 112 5.2.5.1 Intervention Delivery ...................................................................................... 112 5.2.5.2 Aim 1: Acceptability and Usefulness of the Intervention ............................... 113 5.2.5.3 Aim 2: Explore Intervention Outcomes .......................................................... 113 5.2.5.4 Aim 3: Identify Hypothesized Mechanisms of Action ................................... 114 5.3 Results ......................................................................................................................... 115 5.3.1 Participant Demographics ....................................................................................... 115 5.3.2 Intervention Delivery .............................................................................................. 116 5.3.3 Aim 1: Acceptability and Usefulness of the Intervention ....................................... 116 5.3.3.1 Behaviour Change ........................................................................................... 116 5.3.3.2 Participant Feedback ....................................................................................... 117 5.3.4 Aim 2: Explore Intervention Outcomes .................................................................. 120 5.3.5 Aim 3: Identify Hypothesized Mechanisms of Action ........................................... 122 5.4 Discussion ................................................................................................................... 123 5.4.1 Aim 1 Findings: Acceptability and Usefulness of the Intervention ........................ 123 5.4.2 Aim 2 Findings: Explore Intervention Outcomes and their Measurement ............. 125 5.4.3 Aim 3 Findings: Identify Hypothesized Pathways of Behaviour Change .............. 127 5.4.4 Future research ........................................................................................................ 127 xv 5.4.5 Strengths and Limitations ....................................................................................... 127 5.5 Conclusion .................................................................................................................. 129 General Discussion .................................................................................................140 6.1 Summary of Findings .................................................................................................. 140 6.2 Methodological Contributions .................................................................................... 143 6.2.1 Applying the BCW to the Entire Research Process ................................................ 143 6.2.2 The Obesity-Related Behavioural Intervention Trials Model ................................ 144 6.2.3 An Integrated Knowledge Translation Approach ................................................... 145 6.2.4 Application of Network Analysis ........................................................................... 145 6.3 Theoretical Contributions ........................................................................................... 146 6.4 Practical Implications.................................................................................................. 148 6.4.1 Provide Evidence-Based Guidance for Interventions for Family Support Providers of People with SCI .................................................................................................................. 148 6.4.2 Developing a Theory- and Evidence-Based Intervention ....................................... 148 6.5 General Strengths ........................................................................................................ 149 6.6 General Limitations .................................................................................................... 150 6.7 Future Research and Next Steps ................................................................................. 151 6.8 Conclusion .................................................................................................................. 153 Bibliography ...............................................................................................................................155 Appendices ..................................................................................................................................179 Supplementary Materials, Methods and Results for Study 1 ............................. 179 A.1 Description of Methods........................................................................................... 179 A.2 Characteristics of Included Studies ......................................................................... 182 xvi A.3 Behavioural Themes and Measures Identifed in Quantitative Articles .................. 194 A.4 Behavioural Themes and Descriptive Examples Identified in the Qualitative Articles 195 A.5 Behavioural Themes and Measures Identified in the Intervention Articles ........... 197 A.6 Prevalence of TDF Domains and Included Barrier (B) and Facilitator (F) Themes 198 A.7 Prevalence of BCTs Used in Intervention Articles ................................................. 203 A.8 Outcome Themes and Measures Identified in Quantitative Articles ...................... 204 A.9 Outcome Themes and Descriptive Examples Identified in Qualitative Articles .... 207 A.10 Outcome Themes and Measures Identified in Intervention Articles ...................... 210 A.11 References ............................................................................................................... 211 Supplementary Files and Materials for Study 2 ................................................. 218 B.1 TDF Interview Guide .............................................................................................. 218 B.2 TDF Coding Manual ............................................................................................... 226 B.3 TDF Domain Themes: Accessing Supports and Resources ................................... 229 B.4 TDF Domains: Providing Care ............................................................................... 232 B.5 TDF Domains: Intimacy ......................................................................................... 234 B.6 Integrated Knowledge Translation Process ............................................................ 236 Supplementary Materials for Study 3 ................................................................. 237 C.1 Systematic Search Methods .................................................................................... 237 C.2 PRISMA Flow Diagram ......................................................................................... 239 C.3 Results of Systematic Search .................................................................................. 240 C.4 Selected Reporting Guidance for Associated Intervention Development Phase .... 243 xvii C.5 Partner Details and Expertise .................................................................................. 244 C.6 Timetable of Partnership Strategies and Guiding Principles .................................. 245 C.7 Expert Interview Guide ........................................................................................... 253 C.8 Behaviour Change Technique Theoretical Rationale ............................................. 258 C.9 Outline of Final Intervention Strategies and Evidence Sources ............................. 260 C.10 Preliminary Intervention Standard of Practice with Proposed Revisions ............... 263 C.11 TIDieR Checklist .................................................................................................... 274 Supplementary Files and Materials for Study 5 ................................................. 277 D.1 Intervention Perceptions Interview Guide .............................................................. 277 D.2 TIDieR Checklist .................................................................................................... 279 xviii List of Tables Table 3.1 Analysis approach by BCW stage ................................................................................ 75 Table 3.2 Participant demographics .............................................................................................. 77 Table 3.3 TDF Domains by behaviour ......................................................................................... 78 Table 3.4 Leisure time TDF themes ............................................................................................. 81 Table 4.1 Characterization of reporting tools ............................................................................. 100 Table 4.2 Selected BCTs and rationale ....................................................................................... 102 Table 5.1 Participant demographics ............................................................................................ 131 Table 5.2 Selected behaviour goals ............................................................................................ 132 Table 5.3 Participant outcomes ................................................................................................... 133 Table 5.4 COPM scores .............................................................................................................. 134 Table 5.5 Frequency and proportion of TDF domains by behaviour ......................................... 135 Table 5.6 Feasibility recommendations ...................................................................................... 139 xix List of Figures Figure 1.1 The Behaviour Change Wheel (Sourced from Michie et al., 2014) ............................ 21 Figure 1.2 TDF and COM-B (Sourced from Michie et al., 2014; Atkins et al., 2017) ................ 22 Figure 2.1 PRISMA 2009 flow chart of search and study selection adapted from Moher et al. (2009) ............................................................................................................................................ 45 Figure 2.2 TDF domain, behaviour, outcome network analysis ................................................... 46 Figure 3.1 Relationship between outcomes, behaviours, and TDF domains ................................ 82 Figure 3.2 Proportion of TDF and COM-B domains by behaviour .............................................. 83 Figure 4.1 Intervention flow diagram for a tailored BAP (Gutnick et al., 2014; Miller & Rollnick, 2012) and Brief Cognitive Reframing (Locke et al. 2019) intervention ..................................... 103 Figure 5.1 Individual Ability and Satisfaction ratings measured using the COPM. ................... 136 Figure 5.2 Individual CWBS and OCBC scores. ........................................................................ 137 Figure 5.3 Individual MOS-SF 36 and CD RISC 10 scores. ...................................................... 138 xx List of Abbreviations Behaviour Change Technique (BCT) Behaviour Change Technique Taxonomy version 1 (BCTTv1) Behaviour Change Wheel (BCW) Brief Action Planning (BAP) Capability, Opportunity, Motivation -Behaviour (COM-B) GUIDance for the rEporting of intervention Development (GUIDED) Integrated Knowledge Translation (IKT) Motivational Interviewing (MI) Obesity-Related Behavioral Intervention Trials (ORBIT) Theoretical Domains Framework (TDF) Template for Intervention Description and Replication (TIDieR) Randomized Controlled Trial (RCT) Spinal Cord Injury (SCI) xxi Acknowledgements First, I would like to acknowledge my supervisor, Dr. Heather Gainforth. It is with profound amazement and gratitude that I reflect on where we began and where we are now. Five years ago, you took a chance on me as a scared and confused fourth-year undergraduate student. Since that day, your mentorship, guidance, and drive has taught me to be a better researcher, and more importantly, a better person. Your unwavering patience, support, and wisdom through my many existential crises has continued to help me find my passion and remind me of what is most important, both in work and in life. Over these last five years, I have also had the distinct honour of watching you build your lab and your career at this University from the ground up. I have had the opportunity to watch your brilliance and ability to dream big build a data analysis closet in another colleagues’ lab space into a research hub with Drs. Mary Jung and Kathleen Martin-Ginis in its very own building. To take one request to understand how to improve research partnerships and turn it into an entire research program that is changing the landscape of partnership and spinal cord injury research. There are no words to express my gratitude for being a part of that journey and everything that I have learned from you along the way. I am excited to watch all of the good you put into the world and to work with you while you do it, as I “just send it” into this next stage armed with everything you have instilled in me. Thank you for everything. I am eternally grateful to my research partners, Shelia Casemore from SCI Ontario, Teren Clarke from SCI Alberta, and Dr. Christopher McBride from SCI British Columbia. The opportunity to work with you has been one of the most rewarding aspects of this degree. You have given me the opportunity to learn, first-hand, the value of research. Thank you for your continued guidance, expertise, and partnership. xxii I would also like to acknowledge my supervisory committee, Dr. Mary Jung and Dr. Kathleen Martin-Ginis. Thank you for your expertise and guidance throughout this process. I would also like to thank you for the collaborative culture you have fostered within the Centre. What you have created makes the end of this PhD so bittersweet. Thank you to all of my lab members. Emily Giroux, Kristy Baxter, Blake Nicol, Kelsey Wuerstl, Dr. Femke Hoekstra, Dr. Miranda Cary, and Alanna Shwed, your support and wisdom through the last five years is unmatched. A special thank you to Emily Giroux, who has been my partner-in-crime since the beginning. I would like to acknowledge my collaborators and participants. A special thank you to Dr. Shane Sweet for continuously pushing me to think deeper. Dr. Vera-Ellen Lucci, you have been a source of support and wisdom through the last year of my PhD. I am so grateful to have had the opportunity to work with you and learn from you while we merged the worlds of physiology and behaviour change science. You continue to be the researcher and friend I aspire to be. Dr. Sean Locke, your presence has been most agreeable. You have been and will continue to be an interlocutor, mentor and most importantly, a friend. If you provide an ounce of the guidance you have given to me to your future students, they will be unstoppable. Thank you to all of my friends who have seen me through this long and winding academic journey. Kendra, thank you for going through the ups and downs of doing a PhD with me and all of the aspects of life that came with it. Thank you for being you. Sean, Miranda, and Kendra, there is no one else I would have rather experienced an unprecedented global pandemic with, and I strongly attribute getting to this point to you. Thank you.xxiii Dedication To my family. Thank you for your unconditional love and support in every decision I have made. You have given me the confidence to push myself and find my joy. Your support is what has brought me to this point. There are not enough words to describe how grateful I am for everything you have done for me. To Matt. You have been there for me every step along the way. I am more grateful for your love, kindness, and patience than I could possibly explain. This journey with you has been simply the best, and I am so excited to see what comes next.1 Introduction 1.1 The Role Caregivers for People with Spinal Cord Injury Research has extensively examined interventions, tools, and resources to support family caregivers across many chronic conditions such as dementia (Abrahams et al., 2018), cancer (Jadalla et al., 2020), and stroke (Panzeri et al., 2019). However, very few resources exist to support family caregivers of individuals with spinal cord injury (SCI) (Baker et al., 2017; McKay et al., 2020; Smith et al., 2016). Approximately 86,000 people lived with an SCI in Canada in 2010 and is expected to rise to 121,000 by 2030 (Noonan et al., 2012). SCI is a chronic condition that is defined as damage to the spinal cord due to illness or traumatic injury that is accompanied by physiological sequelae that can include functional impairment and medical complications (Livneh & Martz, 2014; McKinley et al., 1999; Sezer et al., 2015). The physical changes that occur following an SCI coupled with social, financial, and environmental barriers can severely impact many areas of one’s life, such as employment, activities of daily living, or social participation (Botticello et al., 2019; Livneh & Martz, 2014). Additionally, the experience of loss of function while interacting with societal barriers can have lasting psychological consequences such as depression, anxiety, and decreased satisfaction with life (Livneh & Martz, 2014; Post & van Leeuwen, 2012). In some cases, SCI may necessitate both emotional and practical support that is typically provided by a family caregiver (Smith et al., 2016). A family caregiver is commonly defined as an individual that aids in activities that someone with whom they share a close relationship is not able to carry out independently and is characterized by being unregulated, untrained, and unpaid (Family Caregiver Alliance, n.d.; Pomeranz et al., 2006; E. M. Smith et al., 2016). This definition aligns with the role family, friends, and partners often play in supporting someone with an SCI. It is important to note that 2 literature almost exclusively uses the term family caregiver across all chronic conditions, including SCI. However, the term caregiver has been argued to imply the care recipient plays a passive role in receiving care despite people with SCI actively contributing to the support they receive and lead independent and self-directed lives (Boschen, Gargaro, et al., 2005). The term support provider has been used to more aptly reflect the nature of providing support to someone with an SCI, which may encompass instrumental activities and extends to emotional and psychological support (Boschen, Gargaro, et al., 2005). For this reason, the term support provider will be used for the studies within this dissertation to portray the SCI context more accurately. The term caregiver will be used for the remainder of this review of the literature to reflect the terminology that is used more commonly in academic settings. In 2018, an estimated 7.8 million Canadians aged 15 and over provided care to a family member or friend with a chronic condition typically related to age or disability (Statistics Canada, 2020). Of these caregivers, 47% were a child of the person receiving support, 13% a spouse, 8% a parent, and 13% a friend, colleague or neighbour (Statistics Canada, 2020). Although Canadian census data explicitly for family caregivers of people with SCI are not available, research indicates that partners are most often family caregivers of someone with SCI followed by parents (Foster et al., 2005; Smith et al., 2016) and participants in studies involving family caregivers of people with SCI have historically been predominantly women (McKay et al., 2020; Smith et al., 2016). The number of hours that family caregivers spend providing care varies based on numerous factors, such as level of disability and relationship to care recipient (Smith et al., 2016). A systematic review of the SCI caregiving literature found that the average number of hours spent providing care ranged from 1 to 24 hours per day and was highly correlated with 3 care recipients’ self-reported degree of disability (Smith et al., 2016). The relationship between caregivers and people with SCI may influence the accuracy of these estimates as parents and partners who provide support often view caregiving activities as a part of their social role (Cranswick & Dosman, 2008). The hours spent providing care extend beyond the primary caregiver. For example, 45% of family caregivers reported receiving support from spouses who may have also adapted their lives to support caregiving activities (Statistics Canada, 2020). Forty-three percent of family caregivers reported receiving support with caregiving activities from their children and 39% from extended family members (Statistics Canada, 2020). A study of family caregivers found that the relationship to care receiver also influenced the number of hours spent providing care (Sinha, 2013). As family caregivers are typically not remunerated for hours spent providing care, reliance on informal caregiving across chronic conditions significantly impacts the Canadian economy. In 2018, only 8% of all caregivers reported financial support through federal tax credits and 6% received direct compensation through government programs (Statistics Canada, 2020). Canadian health system savings in 2007 as a result of unpaid wages to 2.52 million family caregivers between the ages of 45 and 65 was estimated to be approximately 25 billion dollars (Hollander et al., 2009). In 2012, the number of family caregivers aged 45 to 65 increased to an estimated 3.57 million and accounted for only 45% of family caregivers in Canada (Sinha, 2013). This number grew to 4.75 million by 2018, accounting for 61% of family caregivers (Statistics Canada, 2020). These findings indicate that reliance on family caregivers in Canada and their impact on the Canadian economy is growing. While reliance on family caregivers may alleviate Canadian health system costs, overall economic productivity may be impacted by caregivers’ numerous roles. In 2012, approximately 4 60% of family caregivers maintained some form of employment and 28% had children under 18 (Sinha, 2013). In total, caregivers accounted for 35% of the Canadian workforce (Employer Panel for Caregivers, 2015). Reduced work effort due to their caregiving duties is estimated to translate to a loss of 2.2 million hours per week (Employer Panel for Caregivers, 2015). For caregivers of individuals with SCI, research suggests that employment and work effort are impacted by the lack of available government-based or family supports and difficulties balancing their work and caregiving role with other personal responsibilities (Ellenbogen et al., 2006). Family caregivers also have a profound impact on the experiences of individuals with SCI. Perceived support from family and friends is significantly correlated with satisfaction with life of individuals with SCI and one’s ability to return to the community (Tramonti et al., 2015). Support from family and friends was also reported as a primary facilitator of the rehabilitation process and community reintegration (Boschen et al., 2003). Despite the lack of regulation and training, it is suggested that individuals with SCI perceive care from family caregivers to be the same or better than formal care (Smith et al., 2016). For example, individuals with SCI reported greater quality of life when they received care from family or friends when compared to a formal caregiver (Bushnik et al., 2007). The quality of care provided by friends and family is likely a result of characteristics inherent to the friend or family relationship. These characteristics may enable family and friends to have a greater impact on the health and well-being of care receivers than formal care providers (Lengnick-Hall, 1995). 1.2 The Impact of Providing Support Many benefits for family caregivers are suggested to be derived from the caregiver role. Assuming the caregiver role may facilitate an enhanced sense of family cohesiveness and improve caregivers' self-awareness and coping skills (Beauregard & Noreau, 2009; Boschen, 5 Tonack, et al., 2005; Charlifue et al., 2016). Caregivers of people with SCI have reported improvement in their relationship with the person they support through enhanced communication and sense of connection (Beauregard & Noreau, 2009; Boschen, Tonack, et al., 2005; Charlifue et al., 2016; Jeyathevan et al., 2019). These findings were supported by a 2012 survey of Canadian caregivers across conditions which indicated that 92% of caregivers perceived providing care to be a rewarding experience and 70% felt that providing care had strengthened their relationship with the person they support (Sinha, 2013). Despite these cited benefits, extensive research suggests that family caregivers of individuals with SCI experience higher rates of depression, burnout, and fatigue than their non-caregiver counterparts (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016; Weitzenkamp et al., 1997). Increased stress stemming from the caregiver role and the physical demand of caregiving activities has been strongly linked to poor mental and physical health (Butterworth et al., 2010; Pinquart & Sörensen, 2007). Research suggests that parental caregivers may experience greater caregiver burden than spousal caregivers, particularly parents that live with their child(ren) with SCI (Khazaeipour et al., 2017). However, spouses and partners report unique challenges that may deteriorate relationship dynamics, including a loss or change in physical intimacy and shifts in relationship roles (Chan, 2000a; Jeyathevan et al., 2019). Inability to cope with changes related to SCI and communicate about challenges is suggested to contribute to high rates of divorce post-injury (DeVivo & Richards, 1996; Kreuter et al., 1998). Indeed, several studies have reported that caregivers who provided support to their partner with SCI had the same or higher levels of psychological distress than their partner who was injured (Post et al., 2005; Weitzenkamp et al., 1997). Thus, addressing the factors leading to these negative outcomes is critical to maintaining caregivers' health and well-being. 6 1.3 Models to Understand Caregiving One of the most prominent models that elucidates the causal factors associated with family caregivers' poor mental and physical health is the Pearlin Stress Process Model (Pearlin et al., 1990). This model outlines two forms of stressors associated with caregiving that may lead to depressive symptoms and overall chronic stress (Pearlin et al., 1990). Primary stressors are suggested to result from the demands of caregiving (e.g., functional and cognitive status of the person receiving support, an overload of tasks) and are hypothesized to drive the stress process (Pearlin et al., 1990). Secondary stressors, including role and intrapsychic strain, are hypothesized to stem from primary stressors. Role strain refers to the conflict between caregiving demands and other roles and activities outside of caregiving, such as family relationships, employment, and social participation. Intrapsychic stressors refer to the impact of caregiving demands on individuals’ self-concept, including their self-esteem and sense of mastery or control over situations impacting their life. According to the Stress Process Model, these stressors are mediated by caregivers’ coping responses, coping skills, and social support (Pearlin et al., 1990). Many of the role and intrapsychic strains described by the Perlin Stress Model are prominent themes across the SCI literature. For example, many caregivers of people with SCI experience deterioration of their relationship with the person they support relating to family conflict (Chen & Boore, 2009; Dickson et al., 2010; Jeyathevan et al., 2019). The demand of caregiving activities and physical capabilities of the person with SCI may also constrict caregivers' social activities and foster social isolation (Charlifue et al., 2016; Chen & Boore, 2009; Dickson et al., 2010; Lucke et al., 2013). Many caregivers also experience barriers related to their role that may impact their ability to maintain employment (Ellenbogen et al., 2006). Strain in caregivers' social roles have been found to relate to intrapsychic strains, including a loss 7 of identity (Charlifue et al., 2016; Dickson et al., 2010; Lucke et al., 2013). Applying these themes to the Perlin Stress Process model indicates that supports and resources should address these factors associated with stress and depression while fostering coping skills and social support (Zanini et al., 2020). 1.4 Existing Support for SCI Caregivers Despite the substantive body of literature describing the impacts of family caregiving in the context of SCI, rigorously designed and evaluated interventions targeting family caregivers of people with SCI are noticeably lacking (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020). A scoping review of the caregiving literature conducted by Baker et al. (2017) found that much of the caregiving literature in SCI and traumatic brain injury (TBI) is focused on the negative consequences of caregiving. This review also found that interventions for caregivers are limited and require further evaluation (Baker et al., 2017). This scoping review identified only four studies evaluating interventions for SCI caregivers (Baker et al., 2017). This finding was contrasted by 21 intervention studies identified for caregivers of individuals with TBI (Baker et al., 2017). While there are many generalized support programs for caregivers of all chronic conditions (e.g., Carers Canada, n.d.; Caring Road Support Network: The Online Community of Family Caregivers, n.d.; Family Caregiver Toolbox, 2017), generalized support programs may not address concerns specific to caregiving in SCI. The need for SCI-specific caregiving support is highlighted by a wealth of evidence that suggests that SCI caregivers have many unmet needs (e.g., Boschen, Tonack, et al., 2005; Manns & May, 2007; Meade et al., 2004; Turcotte, 2013). For example, Boschen et al. (2003) found that family members were provided minimal support during the rehabilitation process. Thus, family caregivers felt emotionally and cognitively unprepared to provide care. Additionally, caregivers 8 reported that lack of access to information and resources impacted their well-being and ability to provide quality care to someone with SCI (Manns & May, 2007). While the body of research identifying the needs of caregivers is growing, there is a general gap in knowledge of how to address caregivers’ needs. This gap in knowledge underscores the need for further research in intervention development to address the needs of SCI caregivers. 1.5 The Importance of Theory in Intervention Development Behaviour change theory is an important consideration when developing an intervention as behaviours exist within a complex system and are influenced by many factors (Glanz & Bishop, 2010; Michie et al., 2017). Therefore, interventions aiming to change behaviour must understand the context in which the behaviour exists to address the influencing factors (Glanz & Bishop, 2010). Evidence suggests that interventions developed using behaviour change theory may be more successful in changing behaviour than those that do not (Glanz & Bishop, 2010; Painter et al., 2008). Theory-based interventions may be more successful because behaviour change theories provide a framework to identify the factors that influence behaviour, or mechanisms of action, and theoretically hypothesized processes by which an intervention will change the behaviour (Glanz & Bishop, 2010; Michie et al., 2017). Additionally, using a theoretical framework can provide a clear plan for evaluation allowing for improvement of interventions in the future. By outlining the processes by which an intervention aims to change behaviour, process evaluation can determine where an intervention may have succeeded or failed, which may support the development of more successful interventions in the future (Glasgow & Linnan, 2008). The Behaviour Change Wheel (BCW) is a theory-based framework for intervention design that was developed from a systematic review of 19 behaviour change frameworks (Michie 9 et al., 2014). The purpose of developing the BCW was to address limitations across behaviour change frameworks to develop a new framework that was comprehensive, coherent and linked to the mechanisms that underpin behaviour (Michie et al., 2011, 2014). The resulting framework provides a systematic method to understand the context in which the behaviour exists by identifying mechanisms of action and linking them to evidence-based intervention methods (Michie et al., 2011, 2014). Using the BCW provides interventionists with an array of options for designing an intervention that may change the target behaviour and facilitates tailoring the intervention to a specific context. The BCW consists of three layers that address four essential steps to developing an intervention, as shown in Figure 1.1. The first step to intervention development is to understand the target behaviour. The two models are used to address the first step are found at the center of the wheel, including the Capability, Opportunity, Motivation -Behaviour (COM-B) model (Michie et al., 2014) and the Theoretical Domains Framework (TDF) (Cane et al., 2012). The purposes of these frameworks are to identify the mechanisms of action of the behaviour, or barriers and facilitators, that must be addressed to change the behaviour. Mechanisms of action are defined as the process by which behaviour change strategies function to change behaviour (Michie et al., 2017). The COM-B model provides a simple model for understanding behaviour in which ‘capability’ (physical and psychological), ‘opportunity’ (physical and social), and ‘motivation’ (automatic and reflective) are conceptualized as three essential conditions to perform a behaviour (Michie et al., 2014). Capability is defined as “the individual's psychological and physical capacity to engage in the activity concerned. It includes having the necessary knowledge and skills” (Michie et al., 2011, p. 4). Opportunity is defined as “all the factors that lie outside the individual that make the behaviour possible or prompt it” (Michie et 10 al., 2011, p. 4). Motivation is defined as “all those brain processes that energize and direct behaviour, not just goals and conscious decision-making. It includes habitual processes, emotional responding, as well as analytical decision-making” (Michie et al., 2011, p. 4). The TDF further delineates the constructs of COM-B into 14 domains to provide a more comprehensive understanding of the behaviour’s mechanisms of action, as shown in Figure 1.2 (Cane et al., 2012). The 14 TDF domains include knowledge, skills, memory, attention and decision processes, behavioural regulation, social/professional role and identity, beliefs about capabilities, optimism, beliefs about consequences, intentions, goals, reinforcement, emotion, environmental context and resources, and social influences (Cane et al., 2012). The TDF was developed to address overlapping constructs across many behaviour change theories and prevent relevant theoretical constructs from being missed (Cane et al., 2012). Selecting intervention options is the second step of the BCW. Intervention options include intervention functions and policy categories, which can be found on the hub of the wheel (Michie et al., 2014). The BCW defines nine intervention functions, which are broad methods of changing behaviour in an intervention that addresses one or more COM-B and TDF domains (Michie et al., 2014). The purpose of categorizing broad intervention methods is that an individual intervention strategy may serve multiple functions (Michie et al., 2014). Intervention functions are then linked to several policy categories that may support an intervention function's delivery or enactment (Michie et al., 2014). The third step of intervention design, not featured on the BCW, is identifying intervention content and implementation options (Michie et al., 2014). Intervention content refers to individual intervention strategies or behaviour change techniques (BCTs) that are used to deliver an intervention function (Michie et al., 2014). A BCT is considered an observable, 11 replicable, and irreducible active ingredient in an intervention that acts to change a behaviour (Michie et al., 2014). The BCW identified 93 BCTs, which are defined in the BCT Taxonomy v1 (BCTTv1) (Michie et al., 2013). Each COM-B component, TDF domain and intervention function is associated with a list of BCTs that would likely be effective in addressing that factor (Michie et al., 2014). Previous research findings and relevance to the context in which the intervention may be implemented can facilitate the selection of BCTs. Implementation options refer to the mode of delivery, defined as the “physical or informational medium through which a behaviour change intervention is provided” (Marques et al., 2021, p. 3). The selection of the mode of delivery is based on the context of the intervention (Michie et al., 2014). The BCW recommends the APEASE criteria be used to select the most appropriate intervention functions, policy categories, BCTs and mode of delivery (Michie et al., 2014). The APEASE criteria rate items based on affordability, practicability, effectiveness/cost-effectiveness, acceptability, safety, and equity (Michie et al., 2014). The final step of the BCW is planning the evaluation. This step should be considered during the intervention development to select measures that specifically evaluate intervention features such as BCTs, modes of delivery, or mechanisms of action (Michie et al., 2014). Aligning process and outcome measures with intervention features may allow for the core mechanisms of the success or failure of an intervention to be more easily identified (Davey et al., 2015; Michie et al., 2014, 2017). Additionally, early planning of evaluation may shed light on issues that could arise during the implementation of an intervention (Michie et al., 2014). As little is understood about intervention methods that may most effectively support SCI caregivers, BCW is a promising framework for future intervention development for this population. The BCW provides a systematic method of understanding the behaviours that 12 influence positive and negative experiences for SCI caregivers and options for evidence-based intervention methods. Additionally, the BCW can guide the evaluation of these interventions so that they may be improved in the future. 1.6 Scaling Interventions and Trial Design Frameworks such as the BCW guide the selection of appropriate evidence-based strategies to develop an intervention. However, the application of these strategies is complex and is influenced by a multitude of contextual and mechanistic factors that may determine the efficacy and effectiveness of an intervention. Without a clear understanding of these factors, interventions are often translated into practice prematurely, or promising interventions are abandoned (Czajkowski et al., 2015). Understanding these factors early on allows interventions to be rigorously refined and for potential implementation issues to be mitigated. The Obesity-Related Behavioral Intervention Trials (ORBIT) model (Czajkowski et al., 2015) was developed to address this barrier to translating interventions. This model’s development was based on the phased approach of moving pharmacological trials from clinical testing to community-based practice, adhering to evidence-based milestones to indicate intervention readiness for movement to the next phase (Czajkowski et al., 2015). The first step of the ORBIT model is to identify a significant clinical question. The clinical question is refined during Phase I Design using exploratory and quasi-experimental methodological designs. This phase involves defining and testing the basic elements of a behaviour change intervention to identify hypothesized pathways of behaviour change and clinically relevant outcomes to create a defined intervention protocol. Once the milestones of Phase I have been reached, the resulting intervention can move to Phase II Preliminary testing. The fixed intervention protocol is tested and refined in this phase to achieve clinically relevant outcomes through quasi-experimental and 13 randomized study designs. The results of Phases I and II provide support to move the intervention to Phase III Efficacy and Phase IV Effectiveness which involve rigorously testing and evaluating the implementation of the intervention. There are both strengths and limitations to using the ORBIT model. The rigidity of the ORBIT model with regards to milestones such as identifying a meaningful clinical question illustrates a limitation of using this model to develop interventions for family caregivers. It has been recommended that interventions for caregivers adopt flexible and person-centered designs to address multiple behaviours and contexts that could be impacted by the caregiver role (Sörensen et al., 2002; Zarit & Femia, 2008). Additionally, behaviours addressed by these interventions, such as self-care, may not be associated with a measurable clinical outcome as defined by the ORBIT model (Zarit & Femia, 2008). Thus, prescribing to these fixed markers of “success” may limit interventions from moving to the next stage of evaluation despite showing potential benefits that may not be defined as clinically meaningful. Conversely, the clear outline of and emphasis on the early stages of design using non-randomized and exploratory examinations of behaviour change interventions represents a strength that differentiates the ORBIT model from other phased and iterative process models. For example, Medical Research Council (MRC) 2000 Framework (Craig et al., 2008; Craig & Petticrew, 2013), in comparison, endorses the early use of pilot randomized control trials (RCTs) to determine intervention effectiveness and focuses on refining the intervention to limit potential implementation issues. While RCTs are increasingly considered the ‘gold standard’ of establishing evidence, this methodological approach is not always feasible nor appropriate in the early stages of intervention development (Bacon et al., 2014). Early phase research that adopts exploratory and quasi-experimental methods allows investigators to identify mechanisms of 14 action, refine strategies to target mechanisms of action, and develop methods for assessing those constructs that may not otherwise be possible with RCTs (Czajkowski et al., 2015; Davidson et al., 2020). Distilling these processes provides grounds for conducting RCTs and mitigates the risk of mismeasuring potentially critical intervention outcomes (Czajkowski et al., 2015). Conducting RCTs in the area of SCI poses additional challenges as the heterogeneity of SCI results in vastly different outcomes in the extent of paralysis, physical function, and secondary health conditions (Livneh & Martz, 2014; McKinley et al., 1999; Sezer et al., 2015). This heterogeneity limits representativeness of study samples to the population being studied and the adequacy of a matched control group (Martin Ginis & Hicks, 2005; Starfield, 1998). Research in the family support provider population further complicates this challenge as relationships between support providers and people with SCI and the demographic characteristics of both parties significantly vary and little is known about the composition of this population (Smith et al., 2016). Given the infancy of intervention research for family support providers of people with SCI while balancing the limitations of the ORBIT model, emphasis on the early stages of intervention development flexibly guided by the process of the ORBIT model may be valuable to refine and evaluate interventions. 1.7 Knowledge Translation While the development of an effective and evidence-based intervention is an essential first step, many challenges exist in bringing interventions into practice across many areas of health promotion. The lag between discovery and application has been extensively studied but largely unresolved (Morris et al., 2011). The delay in research application, if it reaches that stage at all, translates to the wasting of scarce resources, including time and funding dollars (Grimshaw et al., 2012; Tetroe et al., 2008). This gap also poses significant consequences as 15 people whose lives may be enhanced by research, such as people with SCI and their families, who are not benefitting from research findings (Barrable et al., 2014; Hammell, 2010; Noonan et al., 2014). To address the discovery to application lag, the Canadian Institute of Health Research (CIHR) defines Knowledge Translation (KT) as “a dynamic and iterative process that includes synthesis, dissemination, exchange, and ethically sound application of knowledge to improve the health of Canadians, provide more effective health services and products, and strengthen the health care system" (CIHR, 2012). Research in KT stemmed from challenges of bringing research into practice, also referred to as the “knowledge-to-action” gap (Graham et al., 2006). The Knowledge-To-Action (KTA) Framework was developed to distill the overwhelming number of terms used to describe KT processes (Graham et al., 2006). To refine the process of KT, Graham and colleagues (2007) reviewed and synthesized 31 planned action theories. The resulting framework aimed to close the knowledge-to-action gap through a clear and phased approach of bringing research into practice (Graham et al., 2006). The KTA Framework is composed of two interrelated phases, including 1) Knowledge Creation (as seen in the inner funnel of the KTA), and 2) the Action Cycle (as seen surrounding the Knowledge Creation funnel (Graham et al., 2006). These phases are dynamic and iterative, influencing each other as knowledge and KT processes are optimized. In the Knowledge Creation phase, knowledge is tailored and synthesized as it moves down the funnel to produce knowledge that is useful and applicable. Synthesized knowledge is then used to develop evidence-based products or tools such as practice guidelines or care pathways. Knowledge products or tools then exit the Knowledge Creation phase and enter the Action Cycle. The steps in the action cycle can overlap and address the steps identified as necessary to translate research 16 into practice. 1) identify the problem; 2) adapt the knowledge tool/product to the local context; 3) identify barriers to potential adoption within the potential adopters and the environment; 4) select and tailor the intervention to facilitate implementation; 5) define and monitor knowledge use; 6) determine the impact of knowledge use on health, practitioner, or system outcomes; and 7) evaluate the sustainability of knowledge use and re-assess potential barriers to sustaining knowledge use (Graham et al., 2006). In addition to enhancing knowledge translation, frameworks such as the KTA also prevent the premature application of knowledge. The application of knowledge without evidence supporting its use may result in the application of potentially harmful treatments and practices (Ioannidis, 2005; McGlynn et al., 2003). The KTA provides a methodical step-wise process to develop robust knowledge likely to elicit positive outcomes (Graham et al., 2006). Given the lack of evidence supporting interventions for family caregivers of people with SCI, the knowledge creation phase of the KTA may be a useful framework to guide the generation of knowledge and development of safe and beneficial tools to support this population. 1.8 Integrated Knowledge Translation Research partnerships are an approach to KT that is increasingly gaining attention in behaviour change research to enhance the relevancy and utility of research findings. Research partnerships are conceptualized as the collaboration between researchers and interested and affected parties on research activities (Hoekstra et al., 2020). There are various approaches to research partnership, including Community-Based Participatory Research (CBPR), Participatory Action Research (PAR), and Integrated Knowledge Translation (IKT). These approaches all promote partnership with research users throughout the research process while differing in their overarching aim and origin (Jull et al., 2017; Nguyen et al., 2020). CBPR and PAR partnerships 17 are typically generated through grass-root movements and aim to empower and build the capacity of research users to create social change (Jull et al., 2017; Nguyen et al., 2020). IKT shares the aim of capacity building and empowerment of research users. However, the primary emphasis of IKT lies in the co-development of knowledge that is useful, relevant, and meaningful for research users and the co-application of knowledge (Jull et al., 2017; Nguyen et al., 2020). IKT is defined as “a model of collaborative research, where researchers work with knowledge users who identify a problem and have the authority to implement the research recommendations” (Kothari et al., 2017). In an IKT approach, knowledge or research users are equitably involved throughout the entire research process. The co-production of knowledge between researchers and research users is suggested to facilitate the adaptation of research methods to better suit the research context and result in knowledge that is more impactful and relevant to the needs of the research user (Gagliardi et al., 2016; Kothari & Wathen, 2013; Oliver et al., 2019). As a result, this knowledge may be more easily implemented in policy and easier to adapt to a given context (Kothari & Wathen, 2013). Further, the collaboration between researcher and researcher users may foster a more equipped environment for implementation (Kothari & Wathen, 2013). IKT partnerships' proposed benefits for knowledge application align with the urgent need to co-develop and implement resources to support family caregivers of people with SCI. Despite the growth in popularity of IKT, evidence highlighting the advantage of an IKT approach to research remains limited (Boland et al., 2020). Research on the outcomes and impacts of IKT is limited as there are currently no taxonomies or frameworks of IKT; thus, IKT activities are minimally and inconsistently reported (Gagliardi et al., 2016). Lack of reporting has 18 also limited the development of a coherent theory of IKT that links IKT activities to mechanisms of meaningful partnership and promising outcomes (Boland et al., 2020). Lack of clear guidance on IKT partnerships has resulted in many researchers adopting tokenistic approaches to partnership research such that research users are merely asked to endorse research but given no real decision-making power or control (Woodill & Willi, 2006). Work has been done to further define the practice of IKT in SCI research, including the development of the IKT Guiding Principles for Conducting and Disseminating SCI Research in Partnership (see: http://www.IKTprinciples.com). The IKT Guiding Principles offer the first established set of evidence- and consensus-based norms and values to engage in research partnerships (Gainforth et al., 2020; Hoekstra et al., 2020, 2021). Purposefully engaging in IKT and reporting on IKT activities used to co-develop support and resources for family caregivers of people with SCI may contribute to evidence to improve research partnership and refine the theory and practice of IKT. 1.9 Purpose The overall aim of this research was to co-develop and investigate the acceptability and usefulness of a theory-based behaviour change intervention for family support providers of people with SCI using an IKT approach. This thesis has four key objectives that align with the four intervention stages outlined by the BCW to address this broader goal. The first objective was to synthesize and summarize the SCI support provider literature that could inform interventions for SCI support providers using the BCW, including outcomes, behaviours, barriers and facilitators to behaviours, and existing intervention options and content. The second objective of this research was to understand caregivers’ lived experiences of providing support, including behaviours they feel bring about positive or negative outcomes, barriers and facilitators 19 to those behaviours, and their preferred methods of intervention. These factors provided information specific to intervention development using the BCW. The third objective of this research was to identify and apply the guidance for reporting on theory-based co-development of behaviour change interventions using an IKT approach and apply the guidance to report on a behaviour change intervention based on the synthesis of Studies 1 and 2 using the BCW. The fourth objective of this research was to examine the acceptability and usefulness of the resulting intervention. Consistent with IKT methods, each step of the research process, including the development of the research question, development and refinement of the methodology, and synthesis and dissemination of the findings, was done in partnership with three SCI community-based organizations. 1.10 Overall Research Design As the overarching aim of this research was to develop an intervention, all four studies were guided by the BCW. The designs of both Study 1 and 2 were guided by the recommendations of Atkins et al. (2017) for using the TDF in intervention research. In Study 1, data extraction and synthesis were based on the factors necessary to develop an intervention using the BCW. Extracted data included the behaviours associated with positive and negative consequences of caregiving in SCI and analysis of barriers and facilitators of identified behaviours using COM-B and TDF. Barriers and facilitators identified in this review were linked to evidence-based intervention methods using the BCW. This review evaluated interventions targeting SCI family support providers to identify intervention methods that may be effective. Synthesis of the research findings provided a preliminary understanding of family support providers' needs and identified gaps in the literature that should be addressed. 20 The BCW was used in Study 2 to design the interview guidelines such that probing questions targeted the factors of COM-B and TDF with regards to behaviours associated with positive and negative consequences of caregiving. Additional questions aimed to identify caregivers’ perspectives on ideal methods of intervention. Findings from Study 1 allowed Study 2 to delve further into what is already known of caregivers’ needs while providing a more in-depth understanding of caregivers’ needs specific to intervention development. In Study 3, knowledge derived from Studies 1 and 2 was synthesized based on the BCW to develop a theory- and evidence-based intervention standard of practice. Experts in relevant areas tailored the intervention standard of practice through interviews. Finally, in Study 4, a one-group pretest-posttest study design was used to examine the feasibility of the intervention in terms of acceptability and usefulness of the resulting intervention standard of practice. IKT was embedded in the entire research process. People with SCI were consulted to develop the initial research question. The research question was then vetted with SCI community organizations (SCI Alberta, SCI British Columbia and SCI Ontario) and refined through meetings with leaders in the organizations. Community partner involvement in Study 1, 2, and 4 included developing the research methodology, reviewing the findings, and writing the manuscript. Executive members from all three SCI community organizations are co-authors of the submitted manuscript. The data analysis data was co-analyzed with the partners. Community partners in Studies 3 were involved in developing the reported behaviour change intervention and writing the manuscript. 21 Figure 1.1 The Behaviour Change Wheel (Sourced from Michie et al., 2014) 22 Figure 1.2 TDF and COM-B (Sourced from Michie et al., 2014; Atkins et al., 2017) 23 Guidance for Behavioural Interventions Aiming to Support Family Support Providers of People with Spinal Cord Injury: A Scoping Review 2.1 Overview Approximately eight million Canadians support a friend or loved one with a chronic health condition (Turcotte, 2013). Similar rates exist in many other countries, such as the United States (Institute, 2015) and Australia (Statistics, 2016). A family caregiver, or family support provider, as they will be referred to in this review, is defined as “any relative, partner, friend or neighbour who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition” (Family Caregiver Alliance, n.d.). While not included in this definition, family support providers also provide support to children with a chronic or disabling condition (Turcotte, 2013). The number of hours many family support providers spend providing assistance is often equivalent to a full-time job (Turcotte, 2013). The tremendous demand of providing care coupled with coping with the distress of a family member, partner, or friend's chronic condition may impact family support providers' ability to participate in the labour market, increase symptoms of psychological distress, and decrease physical health (Butterworth et al., 2010; Turcotte, 2013). Given the reliance placed on family support providers, it is critical to developing interventions to improve such outcomes for this population. Research has extensively examined the impact of interventions for family support providers in chronic conditions such as dementia (Dickinson et al., 2017) and traumatic brain injury (Shepherd-Banigan et al., 2018). However, few studies have examined the impact of interventions for family support providers of people with spinal cord injury (SCI) and the overall 24 quality of the existing intervention studies is low (Smith et al., 2016). An SCI is a chronic condition that occurs from damage to the spinal cord due to illness or traumatic injury resulting in partial or complete paralysis and may include long term secondary medical complications (McKinley et al., 1999; Rick Hansen Institute, 2018). The physical changes that occur following an SCI can severely impact many areas of one's life, including, but not limited to, a person's ability to maintain his or her employment, to perform activities of daily living, or to perform self-care (Fougeyrollas & Noreau, 2000). Additionally, the perceived or direct experience of loss of function can have lasting psychological consequences, such as depression, anxiety, and decreased satisfaction with life (Post & van Leeuwen, 2012). As a result of the physical and psychological sequelae of SCI, people with SCI typically require both emotional and practical support. Family support providers typically provide this type of support, which may include, but is not limited to, assisting with activities of daily living, prevention of secondary complications, and nursing care (Scholten et al., 2018; Smith et al., 2016). Providing these forms of support can have a profound emotional and physical impact on family support providers. Research suggests that family support providers of people with SCI experience significant caregiver burden, poor quality of life, and struggle to adjust to their new life context (Baker et al., 2017). In some cases, support providing partners may even experience the same or higher levels of psychological distress than their partner who was injured (Weitzenkamp et al., 1997). While there are many adverse outcomes associated with this role, there are also many benefits to being a family support provider to someone with SCI, such as facilitating a sense of family cohesiveness, self-awareness, and improving coping skills (Beauregard & Noreau, 2009; Boschen, Tonack, et al., 2005; Charlifue et al., 2016). Therefore, it is imperative to mitigate the negative outcomes experienced by family support providers of 25 people with SCI while promoting positive outcomes to maintain the sustainability of this highly prevalent and critical role. Lack of rigorous development and evaluation of interventions expressly targeting family support providers of people with SCI poses a challenge for future intervention development. Family support providers of people with SCI may face distinct challenges when compared to other chronic conditions, such as coping with the typically traumatic nature of SCI or changes primarily in physical functioning. Despite these unique challenges, there is little evidence to draw upon to address this population's specific concerns using an intervention. In the absence of such evidence, behaviour change theory may provide an evidence-based framework to guide intervention development. Behaviour change theory ensures that intervention methods are evidence-based and tailored to address the needs of the target population while increasing the replicability of the methods (Michie et al., 2014). The Behaviour Change Wheel (BCW) is a theory-based framework for intervention design that was developed based on a systematic review of 19 behaviour change frameworks (Michie et al., 2011). The aim of synthesizing these frameworks was to address the limitations of individual behaviour change frameworks. These limitations were addressed through the identification of framework commonalities and linking these features to a model of behaviour that was broad enough to be applied to any behaviour in any setting (Michie et al., 2014). The BCW outlines the following four stages for designing interventions: 1) understanding the behaviour; 2) identifying intervention options and content; 3) identifying implementation options; and 4) evaluation (Michie et al., 2014). Comprehensively understanding the target behaviour by examining the factors that influence the behaviour (i.e., barriers and 26 facilitators) is a critical first step when intervention research is lacking (Michie et al., 2014). The BCW uses the Capability, Opportunity, Motivation -Behaviour (COM-B) framework (Michie et al., 2014) and the Theoretical Domains Framework (TDF) (Cane et al., 2012; Michie et al., 2005) to understand the barriers and facilitators of a behaviour. COM-B aims to categorize barriers and facilitators by the capability, opportunity, and motivation to perform a behaviour (Michie et al., 2014). The TDF further delineates these constructs into 14 categories, termed domains, which were developed to address the issue of overlapping constructs across behaviour change theories (Cane et al., 2012; Michie et al., 2005). These domains provide a more comprehensive understanding of the full range of factors that may influence a behaviour (Cane et al., 2012; Michie et al., 2005). Analyzing barriers and facilitators to behaviours using these two frameworks provides a menu of amenable factors that could be addressed and linked to theory- and evidence-based intervention methods that may be effective for family support providers of people with SCI. Intervention content, referred to in the second step of the BCW, includes broad methods of intervention (i.e., intervention functions and policy categories) and clearly defined techniques (i.e., behaviour change techniques; BCTs). Intervention functions are general categories of behaviour change methods, whereas policy categories are methods of enacting intervention functions. BCTs are the active and irreducible components of these intervention methods, which act to change a behaviour (Michie et al., 2014). Ninety-three BCTs have been identified and defined in the BCT Taxonomy v1 (BCTTv1) (Michie et al., 2013). Each COM-B and TDF domain is associated with a list of BCTs included in the BCTTv1 that may be effective in addressing that factor. In the third step of the BCW, intervention options refer to modes of delivery or how an intervention is delivered. Selection of a mode of delivery that may best 27 support an intervention is based on the context of the intervention (Michie et al., 2014). Planning the evaluation, the final step of the BCW, should occur before or concurrently with designing the intervention to ensure process and outcome measures align with the target behaviour, determinants of behaviour, and intervention methods (Michie et al., 2014). Taken together, the BCW provides a structured approach to identify all necessary components of an intervention based on the context of the behaviour, as well as an outline for evaluation. The benefit of using the BCW is that it provides a menu of the wide range of intervention options available to intervention developers across behaviour change theories and a process to select the theory and intervention options most likely to elicit behaviour change (Michie et al., 2014). Due to the systematic and comprehensive nature of the BCW and accompanying frameworks (i.e., COM-B, TDF, and BCTTv1), evidence can be drawn from various sources to conduct a BCW analysis (Michie et al., 2011). Reviews of the literature can be conducted to provide a retrospective theoretical understanding of behaviours by systematically identifying the necessary components of intervention design from previous research. The BCW and BCTTv1 have been specifically developed for both evaluating and designing interventions (Michie et al., 2014). Therefore, these frameworks provide systematic approaches for retrospectively characterizing interventions that may not have been developed using a behaviour change framework, such as the BCW. Such reviews have been conducted to characterize interventions targeting diet for individuals with type II diabetes (Cradock et al., 2017) and policies targeting physical activity in the workplace (Seppälä et al., 2017). The TDF is an appropriate framework to use to retrospectively identify barriers and facilitators in the literature, as the TDF has been validated to be used across a wide variety of behaviours and settings (Cane et al., 2012). TDF reviews have been conducted for behaviours such as daily physical activity policy 28 implementation (Weatherson et al., 2017) and medication adherence (Crayton et al., 2017). For these reasons, the BCW and accompanying frameworks are suitable to analyze diverse research through a theoretical lens. Given the lack of research in interventions for family support providers of people with SCI, a scoping review may be used to summarize and identify gaps in the literature (Levac et al., 2010; Pham et al., 2014). Baker et al. (2017) have published a systematic scoping review of family caregiver outcomes and interventions in the TBI and traumatic SCI population. This review found that the literature emphasized the adverse outcomes of providing support and that interventions and evidence of their effectiveness are limited (Baker et al., 2017). While this review demonstrated the need for further research in intervention development, it did not identify the information necessary to develop urgently needed interventions, including outcomes, behaviours, or behavioural barriers and facilitators. Additionally, this review did not characterize intervention studies in terms of intervention methods, evaluation methods, or behaviour change theories used. Due to the paucity of evidence regarding effective intervention methods for family support providers of people with SCI, the BCW is a promising framework for intervention development. The systematic nature of the BCW not only provides numerous options for possible effective intervention methods but may also guide the evaluation of interventions so they may be improved in the future. 2.1.1 Purpose This scoping review aimed to develop a theoretical understanding of the components needed to develop and evaluate interventions for family support providers of people with SCI. Guided by 29 the BCW, this review included three sub-aims to address the stages of intervention design (Michie et al., 2014): (1) Identify behaviours associated with providing support and barriers and facilitators to the behaviours (i.e., understand the behaviour); (2) Identify intervention options, content, and implementation options (i.e., behaviour change theory, BCTs, and modes of delivery); and (3) Identify evaluation methods (i.e., described outcomes and measurement tools). 2.2 Methods 2.2.1 Design The present review used a scoping review framework established by Arksey and O’Malley, (2005) and revised by Levac et al. (2010). A scoping review may be used to summarize data and identify gaps in the literature in an understudied area of research. Methods and findings were reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (Moher et al., 2009). The review was conducted using an Integrated Knowledge Translation (IKT) approach. This approach requires researchers to work in an equitable partnership with decision-makers throughout the entire research process (Gagliardi et al., 2016; Jull et al., 2017). Three SCI community-based organizations, Spinal Cord Injury Alberta, Spinal Cord Injury British Columbia and Spinal Cord Injury Ontario, partnered in the development and refinement of the methodology, analysis, and dissemination of the findings. The team met online to discuss each step in the research process. 2.2.2 Search Strategy and Screening A search was performed of CINAHL, Embase, PsycINFO, and Medline databases on May 9th, 2017. The search terms were developed with an information scientist and encompassed 30 terms used in the literature to describe a family support providing role and SCI. The search terms included: (spinal cord injur* OR spinal cord dis* OR SCI OR parapleg* OR quadripleg* OR tetrapleg*) AND (caregiv* OR carer* OR informal care* OR unpaid care* OR caretake* OR support provider). To maintain the focus and feasibility of the review, search terms such as family, spouse or partner were not included. Search terms were tailored to individual databases including controlled vocabulary, and results were imported to EndNote X8.2 (EndNote, 2018) citation software. Individual search terms can be found in the supplementary files. Two researchers (RM, KW) independently screened titles, abstracts, and full-texts based on the inclusion and exclusion criteria. The two researchers discussed disagreements and consulted a third reviewer (HG) for discrepancies that could not be resolved. Inclusion criteria for peer-reviewed articles were that the article 1) discussed family support providers (or caregivers) of individuals with SCI and 2) discussed a psychosocial outcome of being a family support provider to someone with an SCI (or caregiving) that is influenced by amenable factors and/or 3) described or evaluated an intervention for family support providers (or caregivers) of individuals with SCI targeting support providers' experiences. Review articles and articles not written in English were excluded. 2.2.3 Data Extraction and Analyses Extracted content and analyses methods are described in Table 2.1. Data extracted from quantitative, qualitative, and intervention articles included behaviours, barriers and facilitators to behaviours, outcomes, and measures. Additional data extracted from intervention articles included behaviour change theory, BCTs, and modes of delivery. Two researchers (RM, KW) 31 iteratively developed data extraction methods using ten articles to ensure the data extraction procedures aligned with the research purpose. Each researcher independently extracted data from a single article and came together to discuss disagreements and extraction techniques. Data extraction of the remaining articles was divided amongst the two researchers once the two researchers agreed upon an extraction procedure. Extracted data were analyzed using inductive thematic analyses (Braun & Clarke, 2006) and deductive coding. Coding frameworks used to complete deductive analysis included the TDF (Cane et al., 2012), Theory Coding Scheme (Michie & Prestwich, 2010), BCTTv1 (Michie et al., 2013), and the Mode of Delivery of Behaviour Change Interventions Taxonomy version 0 (MoDTv0) (Carey et al., 2016). Both researchers received certified training to use the BCTv1 using the training developed by Michie et al. (BCT Taxonomy Training, 2019). 2.2.4 Reliability Percent agreement, Cohen's Kappa statistic (Cohen, 1968), and prevalence-adjusted bias-adjusted Kappa statistic (PABAK) (Byrt et al., 1993) were used to demonstrate reliability between coders for abstract and full-text article search as well as coding of barriers/facilitators, behaviour change theories, BCTs, and modes of delivery. PABAK was used to adjust for bias between coders in selecting codes and the relative probability of both positive (i.e., agreement that the same code is present) and negative agreement (i.e., agreement that the same code is not present) (Byrt et al., 1993). Agreement between coders was interpreted as substantial for values of 0.60–0.79 and outstanding for those above 0.80 (Landis & Koch, 1977). 2.2.5 Network Analysis Links or ties between factors (i.e., outcomes to behaviours and behaviours to barriers/facilitators) were characterized using a network structure developed using UCINET v6 32 (Borgatti et al., 2002) and NETDRAW (Borgatti, 2002) software. A tie between two factors was identified if a relationship between the factors was clearly discussed within the text where the factors were described. Network data were analyzed using a symmetric, undirected network. Degree Centrality was calculated to determine prominent behaviours, barriers and facilitators, outcomes, and measures within the network (Valente, 2010). This measure assesses the number of links to and from a factor. As the direction of relationships between factors could not be determined, only the total number of ties per factor was measured. 2.3 Results 2.3.1 Search Results and Included Studies The literature search rendered 1932 articles. After screening, a total of 59 articles were included in the final review. Article details can be found in the supplementary files. The screening process is illustrated in Figure 2.1. Agreement between researchers was substantial for both abstracts (Percent Agreement: 83.6%; Cohen's Kappa: 0.68; PABAK: 0.67) and full-text (Percent Agreement: 84%; Cohen's Kappa: 0.68; PABAK: 0.68). A total of 2837 support providers were included in all studies. The participants were largely women (81.9%; n = 2324). Most participants were either a spouse or partner (48.7%; n = 1381) of the support recipient or parents (24.3%; n = 688). Of the partners or spouses, most identified with a feminine relationship role (e.g., wife, girlfriend; 39.8%; n = 393) as compared to a masculine relationship role (e.g., husband, boyfriend; 2.5%; n = 35). It is important to note that sexual orientation was not reported in any study. Of the parents, most identified as mothers (45.3%; n = 312) as compared to fathers (8.7%; n = 60). Other relationships to the support recipient included siblings (5.3%; n = 150), children (2.0%; n = 57), grandparents (0.8%; n = 22), friends (0.3%; n = 9), or other uncategorized relationships (e.g., aunt, uncle, or ex-spouse; 33 7.8%; n = 222). Some studies included formal caregivers (e.g., attendants or rehabilitation professionals; 0.7%; n = 19). However, data for these participants were not included in the analysis for this review. Of the 2863 individuals receiving support, 37.7% were reported to have paraplegia (n = 1079) and 28.0% to have tetraplegia (n = 803). Additionally, 31.7% were reported to have incomplete injuries (n = 908) and 28.9% to have complete injuries (n = 826). A table outlining support provider and recipient characteristics can be found in the supplementary files. 2.3.2 Stage 1: Understand the Behaviour Behaviours Thirty-two of the 59 included articles specified behaviours associated with providing support to someone with an SCI. Four behaviours were measured in the quantitative literature. These behaviours included problem-solving/coping/adapting (i.e., objective behaviours or steps that are taken to solve a problem related to providing support, or to cope with or adapt to their life situation; k = 8); leisure time activities (i.e., to participate in leisure time activities such as, travel/vacation or recreation; k = 4); daily occupations (i.e., to engage in day-to-day activities such as cleaning, grocery shopping or house repairs; k = 1); and work/employment (i.e., maintaining employment or seeking education while assuming a support providing role; k = 1). A complete list of behaviours and behavioural measures can be found in the supplementary files. Fourteen behaviours were identified in the qualitative articles. A summary of behaviour themes and illustrative examples can be found in the supplementary files. The most commonly described behaviours included leisure time activities, provision of practical care and/or support (i.e., the act of providing practical support to someone with an SCI or other family members/friends that are involved with someone with an SCI; k = 9); provision of emotional support (i.e., the act of 34 providing emotional support to someone with an SCI or family members/friends that are involved with someone with an SCI; k = 9); and daily occupations (k = 9). Four behaviours were identified in the intervention articles. A complete list of behaviours and behavioural measures identified in intervention articles can be found in the supplementary files. The most commonly addressed behaviour was problem-solving (k = 4). The Social Problem Solving Inventory-Revised (SPSI-R) was the measure most commonly used to assess problem-solving (k = 3) (D’Zurilla et al., 2002). In three of the articles, individual behaviours or situations of greatest importance were self-identified by participants. Problem-solving behaviours were then used to enable participants to make changes to these self-identified areas. Barriers and facilitators The most commonly coded TDF domains within barriers included environmental context and resources (n = 61), social influences (n = 22), and social/professional role or identity (n = 20). The most commonly coded TDF domains within facilitators were environmental context and resources (n = 33), social influences (n = 14), and behavioural regulation (n = 14). Across articles, more barriers (n = 138) to behaviours were reported than facilitators (n = 86). Percent agreement, Cohen's Kappa statistic and PABAK were 57.0%, 0.70 and 0.92, respectively, indicating substantial to outstanding agreement. As quantitative studies were primarily correlational in design, it was often not possible to determine the direction of relationships between factors. Therefore, barriers and facilitators were not extracted from quantitative studies. A summary of themes and TDF domains can be found in the supplementary files. 35 2.3.3 Stage 2 and 3: Identify Intervention Options and Content Use of theory in interventions None of the six intervention articles explicitly used behaviour change theory to design the intervention. A context-specific model developed from previous caregiving research guided one intervention (Burton et al., 2000; Schulz et al., 2009; Schulz & Williamson, 1993). One study protocol used in three of the intervention articles used the social problem-solving model (D’Zurilla et al., 2002). Of note, this theory was not identified in a review of behaviour and behaviour change theory (Gainforth, Latimer-Cheung, et al., 2015). BCTs A complete list of BCTs present in the interventions can be found in the supplementary files. In total, 10 BCTs were used in the six interventions. The most frequently used BCTs were problem-solving (k = 6), instruction on how to perform the behaviour (k = 5), and behavioural practice and rehearsal (k = 4). Interventions used on average 4.5 BCTs, ranging from four to six BCTs. Average interrater reliability between coders was outstanding (Percent Agreement: 57.7% ± 16%; Cohen's Kappa: 0.70 ± 0.14; PABAK: 0.93 ± 0.02). Mode of delivery Across interventions, eight different modes of delivery were identified. Face-to-face was the primary mode of delivery in three interventions. Face-to-face delivery was supplemented by audio calls and print material (i.e., letters and leaflets). Distance delivery (i.e., video call) was the primary mode of delivery in two interventions and were supplemented by face-to-face delivery and printed material (i.e., leaflets and letter). In one intervention, participants were given a choice of face-to-face or audio call as a primary mode of delivery. These modes of delivery were supplemented by digital delivery (i.e., phone) and printed material (i.e., leaflet). 36 Average interrater reliability between coders was outstanding (Percent Agreement: 73.3% ± 31.2%; Cohen's Kappa: 0.80 ± 0.24; PABAK: 0.96 ± 0.05). 2.3.4 Identify Evaluation Methods Outcomes and measurement tools The studies included in this review primarily focused on the outcomes of providing care to someone with an SCI. Fifteen groups of measures were used in quantitative studies. A complete list of outcomes and measures can be found in the supplementary files. The most commonly measured outcomes included caregiver burden (k = 13), depression (k = 13), and satisfaction with life (k = 8). The most commonly used measure to assess caregiver burden was the Zarit Burden Interview (ZBI; k = 6) (Zarit et al., 1980). The most commonly used measure to assess depression was the Center for Epidemiological Studies—Depression Scale (CES-D; k = 5) (Radloff, 1977). The most commonly used measure to assess satisfaction with life was the Satisfaction with Life Scale (SWLS; k = 7) (Diener et al., 1985). A total of 11 outcome themes and two sub-themes were identified in the qualitative literature. A summary of these themes and illustrative examples can be found in the supplementary files. Themes sourced from the greatest number of articles included relationship changes and breakdown (k = 15), overload and strain (k = 11) and adjustment and adaptation (k = 9). Relationship changes and breakdown was defined as "changes in romantic, marital, or family relationships due to the support providing role". Overload and strain was defined as "feeling burdened or overwhelmed by support providing tasks or emotions related to their loved one or friend's injury". Finally, adjustment and adaptation was defined as "the internal process of accepting and adjusting to life as a support provider to someone with an SCI". 37 Six groups of measures were used in the intervention studies. A complete list of outcomes and measures can be found in the supplementary files. The most commonly measured outcomes included quality of life (k = 5) and depression (k = 5). Quality of life was most often measured using the Medical Outcomes Study Short Form Health Survey (SF-36; k = 4) (Stewart et al., 1988). Depression was most often measured using the Inventory to Diagnose Depression (IDD; k = 3) (Zimmerman & Coryell, 1987). 2.3.5 Network Analysis The resulting network structure between barriers/facilitators, behaviours, and outcomes is illustrated in Fig. 2.2. Problem-solving/coping/adapting was the most prominent behaviour accounting for 40.5% of the total ties, followed by leisure time (27%) and provision of care/support (24.3%). The most prominent TDF domain was social influences (12%), followed by environmental context and resources (11%), social/professional role and identity (7%) and behavioural regulation (7%). The most prominent outcome was adjustment and adaptation, accounting for 27% of the total ties, followed by relationship changes and breakdown (18.9%) and overload and strain (18.9%). It is important to acknowledge that total ties may not imply importance. Lack of ties may only imply that research has not yet investigated that barrier/facilitator-behaviour or behaviour-outcome relationship as extensively as ties were assessed by the presence or absence of a descriptive link in the literature. 2.4 Discussion Due to limited research examining the effect of behavioural interventions on family support providers of people with SCI, the mechanisms that underpin behaviours impacting this population are not well understood. Behavioural mechanisms may also differ widely across groups due to characteristics such as the support provider-recipient relationship, age, or the 38 support recipients' level of injury. However, such differences are not clearly delineated across all literature. Nearly all studies aimed to describe the overall experience of being a family support provider and focused primarily on outcomes. In many of these studies, behaviours were examined briefly or not at all. This review suggests that behaviours such as engaging in leisure time activities, providing adequate care, and problem-solving may contribute to positive outcomes for family support providers. Additionally, the TDF domains of environmental context and resources, social influences, and social/professional role or identity were frequently reported as barriers to these behaviours, while behavioural regulation was reported to promote these behaviours. Findings related to each stage of behaviour change intervention development are outlined below to aid in interpretation. 2.4.1 Stage 1: Understand the Behaviour This review provides evidence that many behaviours are impacted by the role of providing support to someone with an SCI. The diversity in these behaviours indicates there is a wide range of potential behavioural targets for intervention. The behaviours most commonly identified in the literature included leisure time activities/daily activities, problem-solving, and providing practical support. Leisure time activities (D’Ippolito et al., 2018; Waligora et al., 2018), problem-solving (Bambara et al., 2009), and providing support (Peterson et al., 2016) have also been found to be impacted by family support providing roles in other areas. Measuring target behaviours is essential when evaluating interventions. However, many behaviours commonly described in the qualitative literature did not align with behaviours measured in quantitative literature. For example, participation in leisure time activities was infrequently measured or measured using global scales such as the SF-36 or ZBI, which provide 39 minimal detail. Future studies should develop or more readily implement behavioural measures that provide further context to build upon the wealth of qualitative literature describing these behaviours. Four TDF domains were frequently found to influence behaviours, including environmental context and resources, social/professional role and identity, social influences, and behavioural regulation. These domains were also found to influence various behaviours for family support providers of people with dementia (Peterson et al., 2016) or who have had a stroke (Waligora et al., 2018). Along with the lack of supports and resources, family support providers of people with SCI may indirectly experience many of the same barriers faced by people with SCI due to the context of the support provider-recipient relationship. For example, people with SCI may be physically limited by inaccessible environments due to their physical impairments (i.e., environmental context and resources) (Cobb et al., 2018). Family support providers may also not feel able to access such environments due to their relationship with the support recipient (i.e., social influences), feeling that engaging in behaviours in such environments alone may be socially inappropriate (i.e., social influences), or feeling that such behaviours conflict with their support providing role (i.e., social professional role and/or identity). Interestingly, some family support providers were able to overcome these barriers by implementing behavioural strategies (i.e., behavioural regulation). However, family support providers were only able to implement these strategies when it was possible to overcome the behavioural barrier. For example, support providers and recipients may be able to easily adapt certain activities they previously enjoyed, such as travelling, while other activities may be difficult or impossible to adapt, such as visiting a friend's inaccessible apartment. In relation to 40 the COM-B model, these findings suggest that family support providers may not lack the motivation to engage in behaviours, but face systemic barriers imposed by built and social environments (i.e., physical and social opportunity). These barriers may need to be addressed by interventions at a governmental or organizational level. Less frequently coded TDF domains were also uniquely identified for many behaviours, and themes within these domains differed based on behaviour, context, and individual factors (e.g., support provider-recipient relationship, age, or the support recipients' level of injury). As the behaviours and behavioural mechanisms appear to vary at an individual-level, a 'one-size-fits-all' approach may not address all needs of family support providers. Individually tailored interventions have shown promise in other areas (Ploeg et al., 2017) and may be needed in conjunction with governmental/organizational level interventions. 2.4.2 Stage 2 and 3: Identify Intervention Content and Implementation Options Use of behaviour change theory in the development of interventions was limited. Reviews in other chronic conditions have indicated that use of a theoretical framework for interventions resulted in larger overall effect sizes (Dickinson et al., 2017). Problem-solving was the basis for all interventions aiming to support family support providers of people with SCI. While problem-solving frameworks are also used frequently in other areas (Shepherd-Banigan et al., 2018), other frameworks or theories have not been tested in the SCI family supporter population. As the barriers faced by family support providers often relate to physical and social environments rather than motivational factors, theories such as the Self-Determination Theory or the Social Ecological Model, which target individuals' broader context, may be appropriate to design an intervention. 41 Given the scarcity of intervention research for family support providers of people with SCI, there is insufficient evidence to suggest which BCTs or modes of delivery have been most effective in eliciting behaviour change. The effectiveness of BCTs and mode of delivery may also be dependent on individual characteristics such as support provider-recipient relationship, age, or the support recipients' level of injury. The use or reporting of BCTs was minimal, and BCTs that were used typically targeted the intervention functions training and enablement (e.g., behavioural practice and rehearsal, self-monitoring of a behaviour) (Michie et al., 2014). These intervention functions are suggested to be effective in addressing barriers in physical and social opportunities (Michie et al., 2011). However, future research should examine the impact of using additional BCTs in interventions, as well as differences in impact for specific groups. Minimal variation existed in the mode of delivery of interventions. Interventions were primarily delivered face-to-face, by phone, or by audio/video technology. A study conducted by Kishita et al. (2018) found that the mode of delivery for family support providers of people with dementia may not impact the effectiveness of the intervention. However, future research should further examine the impact of mode of delivery in the broader SCI family support provider population, as well as for specific groups. 2.4.3 Identify Evaluation Methods A wide range of outcomes of providing support were both described and measured. Many of the outcomes described in the qualitative literature did not correspond with quantitative measures. General quantitative measures such as the ZBI and SF-36, which are often used in family support provider literature, loosely accounted for many of the qualitative themes not directly measured. Conversely, some outcomes, such as changes in relationship dynamics, were frequently described in the qualitative literature but rarely measured in the quantitative literature. 42 Future research should examine and implement more diverse outcome measures to evaluate changes in the experience of supporting someone with an SCI more comprehensively, while continuing to qualitatively investigate support providers' needs and perspectives. 2.4.4 Strengths and Limitations Use of a theoretical framework to understand behaviour and inform intervention design was a novel strength of this research. A behavioural analysis using BCW and TDF allows for the identification of the mechanisms that influence a behaviour while proposing evidence-based methods of intervention that may act upon those mechanisms (Cane et al., 2012; Michie et al., 2014). Using a theoretical framework also enhances the replicability of interventions so that mechanisms may be evaluated and better understood (Gainforth, West, et al., 2015; Michie et al., 2014). This comprehensive and systematic approach provides clear guidelines for future intervention development, potentially allowing non-specialists to more easily implement or adopt evidence-based interventions to better support SCI family support providers within the community. Working in partnership with decision-makers in SCI community services using an IKT approach built upon this strength. Three community-based SCI organizations continually refined the research question, methodology, and analysis using their unique understanding of family support providers' needs. By tailoring the research, the findings are more relevant to the context of community-based organizations. As a result, the findings may be more easily implemented by community-based organizations. Ultimately, working in partnership with decision-makers may increase the likelihood that the findings of this review will reach and aid family support providers of people with SCI in improving their overall outcomes. 43 The use of network analysis was another unique strength of this study. The visual depiction of the relationships between factors may make it easier for decision-makers to interpret the findings quickly and accurately. An easy-to-understand representation of behaviours that may predict multiple adverse outcomes or barriers that may impact several behaviours may also enhance the translation of findings within organizations. The translation of findings may allow decision-makers to make quick, evidence-based decisions regarding resource allocation targeting family support providers of people with SCI. Improving the efficiency of this process may ultimately reduce the gap between research and application. While there are strengths to this research, it is important to note that there are some limitations to the interpretation of the findings of this review. The heterogeneity of the literature posed one of the most significant limitations to this review. Due to the diversity in participant characteristics, such as the support provider-recipient relationship (e.g., spouse-spouse, parent-child, friend-friend), physical function impacted by SCI, years living with SCI, or the age of onset of SCI, it would be impossible to generalize findings across the entire SCI family support provider population. The heterogeneity of the research with regards to measurement and focus also limited our ability to compare findings across studies. Additionally, due to the large quantity of literature available regarding family support providers of people with SCI, grey literature was not identified in order to maintain the feasibility of this review. As the included literature was typically not based on behaviour change theory, it is likely that important factors relevant to behaviour change theory were not reported. Vague reporting may have also resulted in misinterpretations of the relationships between barriers and facilitators and other factors. The nature of coding using the TDF and our data extraction procedures may also have caused misinterpretations. Using these methods, it was only 44 possible to interpret findings based on frequency. However, frequency does not imply importance in all cases. While some factors may have been present in only one article, these factors may be exceedingly important but not targeted or discussed in other studies. 2.4.5 Future Research Future research is needed to more comprehensively understand which behaviours impose the most significant impact on family support providers of people with SCI, the factors that influence these behaviours, and how these behaviours and factors may differ for specific support provider groups. The outcomes associated with being a family support provider of someone with an SCI have been documented extensively. However, few studies have provided an in-depth examination of behaviours that are impacted by the support providing role, nor examined these behaviours through a theoretical lens. Additionally, few measures were used to evaluate engagement in behaviours for this population. The development and implementation of measures to observe changes in behaviour are critical to understanding the impact of behavioural interventions to support family support providers of people with SCI. 2.5 Conclusion It is clear from the findings of this review that family support providers of people with SCI experience many adverse outcomes as a result of their support providing role. However, the scarcity of research examining approaches to addressing these outcomes is of concern. A theoretical understanding of the behaviours that may contribute to adverse outcomes is critical to developing and evaluating evidence- and theory-based interventions. To our knowledge, this review is the first to address the components of the BCW necessary to develop interventions based on previous research relevant to family support providers of people with SCI. 45 Figure 2.1 PRISMA 2009 flow chart of search and study selection adapted from Moher et al. (2009) 46 Figure 2.2 TDF domain, behaviour, outcome network analysis Note: The node size represents the degree centrality of each component such that larger nodes indicate greater degree centrality. (ECR = Environmental Context and Resources, SI=Social Influences, SPRI= Social Professional Role and Identity, BReg = Behavioural Regulation, MADP = Memory, Attention and Decision Process, BCon = Beliefs about Consequences, BCap = Beliefs about Capabilities). 47 A Theory-Based Exploration of the Experiences of Family Support Providers of People with Spinal Cord Injury using the Theoretical Domains Framework and Behaviour Change Wheel 3.1 Overview Spinal cord injury (SCI) is a chronic condition due to damage to the spinal cord from trauma or illness resulting in partial or complete paralysis (Livneh & Martz, 2014; McKinley et al., 1999; Sezer et al., 2015). The functional changes, secondary conditions, and psychological impact of SCI coupled with the social and environmental barriers experienced by people with SCI may result in the need for additional support. Family support providers, including partners, family members, or close friends of someone with SCI, often provide practical and emotional support that may be necessary to cope with the impacts of SCI and address societal barriers (Boschen, Tonack, et al., 2005; Pomeranz et al., 2006; Smith et al., 2016). Though being characterized as unregulated, untrained, and typically unpaid, family support providers play a critical role in the rehabilitation and community reintegration of people with SCI (Boschen et al., 2003). Providing support to a family member with an SCI can positively and negatively affect the family support provider. Assuming the support providing role has been shown to foster self-awareness, resilience, and enhanced coping skills (Beauregard & Noreau, 2009; Boschen, Tonack, et al., 2005; Charlifue et al., 2016). For some dyads, supporting a family member with SCI may improve the relationship between the support provider and person with SCI through an enhanced sense of connection and learned communication strategies (Beauregard & Noreau, 2009; Boschen, Tonack, et al., 2005; Charlifue et al., 2016; Tramonti et al., 2015). Despite these potential benefits, the family support provider role is also suggested to be associated with 48 decreased physical and mental health (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020). Changes in social roles within and outside of the support provider-recipient relationship coupled with the physical and emotional changes resulting from SCI may harm the relationship dynamics between family support providers and people with SCI (Chan, 2000b, 2000a; Jeyathevan et al., 2019; McKay et al., 2020). The physically demanding nature of providing care, such as assisting with transfers, toileting, or dressing, may also impact the physical functioning of family support providers, impairing their ability to support individuals with SCI (Boschen et al., 2003; Lynch & Cahalan, 2017). Mitigating the negative outcomes and improving the positive outcomes of providing family support is critical to enhancing the well-being of both family support providers and the people with SCI. However, few interventions for family support providers of people with SCI currently exist (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020). Behaviour change theory is useful to guide primary studies that aim to inform the development interventions. These theories describe the hypothesized processes by which physical and psychological constructs regulate behaviour change (Michie et al., 2017). The Behaviour Change Wheel (BCW) is a synthesis of 19 behaviour change frameworks across 83 behaviour change theories constructing a single systematic framework to guide behaviour change intervention development (Michie et al., 2014). The BCW includes three primary stages to develop an intervention, including 1) understand the behaviour, 2) identify intervention options, and 3) identify intervention content and implementation options (Michie et al., 2014). The first stage of intervention development, understanding the behaviour, includes describing behaviours and their context in detail. This stage involves understanding the outcomes associated with the behaviour to allow for the evaluation of the behaviour impact and identifying the factors that 49 impede (i.e., barriers) or promote (i.e., facilitators) behaviour (Michie et al., 2014). These factors can then be linked to interventions strategies expected to elicit behaviour change in stages 2 and 3 (Michie et al., 2014). The Theoretical Domains Framework (TDF) (Cane et al., 2012) is a validated framework developed from the synthesis of over 80 constructs across 33 theories to theoretically understand and characterize barriers and facilitators to behaviour. The TDF is ubiquitous in the fields of intervention and implementation to examine barriers and facilitators of behaviour through a theoretical-lens (e.g., (Giroux et al., 2020; Lawrason & Martin Ginis, 2021; Seppälä et al., 2017; Weatherson et al., 2017). Importantly, the TDF is designed for use in conjunction with the BCW (Michie et al., 2014) to design interventions by guiding the systematic and theory-driven selection of intervention content by linking theoretical barriers and facilitators to intervention strategies hypothesized to elicit behaviour change. Therefore, the overall aim of this interview study was to use the BCW and TDF to co-develop recommendations to guide the co-development of a behaviour change intervention to support family support providers of people with SCI. Specific objectives align with the three stages of intervention design outlined by the BCW: (1) To explore the positive and negative experiences of providing in this population and the behaviours that influence these outcomes and experiences (i.e., Stage 1: Understand the behaviour); (2) To identify theory-based barriers and facilitators to behaviours that influence family support providers experiences using the TDF and emergent themes within each of the domains (i.e., Stage 1: Understand the behaviour); 50 (3) To identify preferred methods for interventions aiming to enhance the positive experiences and reduce the negative experiences of providing support (i.e., Stage 2 & 3: Identify intervention options, content and implementation options) (Cane et al., 2012; Michie et al., 2014) 3.2 Methods 3.2.1 Methodological Approach This research adopted an Integrated Knowledge Translation (IKT) approach, which is defined as the “meaningful engagement of the right research users at the right time throughout the SCI research process.” (Gainforth et al., 2020). Three community-based SCI organizations that provide programs to people with SCI and their families partnered in the co-development and refinement of this study’s methodology and the analysis and dissemination of the findings. These organizations included SCI Alberta, SCI British Columbia, and SCI Ontario. Representatives of the community organizations worked as a part of the research team to co-develop the research question, research purpose, methodology, and co-interpreting and co-disseminating the results. A table outlining the IKT process and partner details can be found in supplementary files (Appendix B.6). Semi-structured interviews were co-selected as the data collection method. 3.2.2 Philosophical Assumptions This research was grounded in the philosophical assumption of pragmatism which embraces a plurality of methods (Kaushik & Walsh, 2019; Morgan, 2014). A pragmatic paradigm prioritizes the research question by seeking to join beliefs rather than seeking a single truth or reality (Morgan, 2014). As such, the ontology of relativism and a constructivist epistemology underpinned this research. A relativist ontology assumes there are multiple subjective realities and that realities are shaped by one’s context (Sparkes, 2014). A 51 constructivist epistemology positions knowledge as socially derived and co-created by the researcher, subject, and social environment (Sparkes, 2014). A pragmatic paradigm and these philosophical assumptions also align with the principles of an IKT approach (Gainforth et al., 2020; Nowell, 2015). Pragmatism promotes merging multiple sources of knowledge to generate a deeper understanding of the phenomenon and co-construct relevant solutions (Johnson & Onwuegbuzie, 2004; Nowell, 2015). An IKT partnership facilitated collaboration between the researchers and SCI organization representatives with differing knowledge in the co-development of the research methodology and analysis. IKT and a pragmatic approach prioritize actionable research, which is demonstrated by the IKT partnership’s commitment to the dissemination of the research findings (Nowell, 2015). 3.2.3 Procedures Ethical approval was received from the University of British Columbia Okanagan Behavioural Research Ethics Board (H17-02308). The three Canadian SCI community-based organizations recruited participants. The recruitment materials were posted on social media, organization websites, and emailed directly to the organizations’ membership. To be eligible to participate, participants were required to be either a non-agency related family support provider providing support to someone with an SCI and/or an individual with an SCI who receives informal care from a family member. For the purposes of this study, non-agency related, or family support providers, were defined as ‘a paid or unpaid individual who provides support to someone with SCI that is not employed by or related to a caregiving agency’. Interested and eligible participants were asked to complete a consent form and provide demographic and contact information via survey (Qualtrics, University of British Columbia, Canada). 52 Due to the diverse range of relationships that exist between support providers and people with SCI and the heterogeneity of the SCI population, this study employed purposeful sampling (Palinkas et al., 2015). Purposeful sampling allows for the investigation of a broad range of perspectives to explore common patterns that exist among diverse populations (Onwuegbuzie & Collins, 2007; Palinkas et al., 2015). This form of sampling was used to ensure analysis incorporated multiple perspectives from diverse contexts of family support providers that would likely be targeted by an intervention. Given the challenges associated with reaching certain demographics (e.g., fathers (Affleck et al., 2012)), convenience sampling was used to supplement purposive sampling. The characteristics used to select support providers included their relationship to the person with SCI, gender, and injury of the person with SCI they support. The characteristics used to select people with SCI included relationship to the family support provider, gender, and level of injury. A minimum initial analysis sample aimed to include 12 (or a minimum of 10) interviews with family support providers (n = 8) and people with SCI (n = 4). The selection of the a priori minimum was grounded in the assumptions of pragmatism and guided by Atkins et al. (2017) sample size recommendations for saturation to address the research aim of informing interventions. However, given the critiques of saturation and reflexive thematic analysis (Braun & Clarke, 2021), the decision to conclude data collection was made pragmatically during collection and analysis. The interview guide was pilot tested with researchers and a person with SCI who receives support from a family member. One researcher (RM) conducted individual audio-recorded semi-structured interviews over the telephone. 53 3.2.4 Interview Guide The interview guide was co-developed in partnership with researchers, members of the community, and SCI community organizations (see Appendix B.1). Family support providers were asked to provide insight based on personal experiences for all questions in the interview guide. People with SCI who received support from family were asked to provide insight based on others’ experiences. The interview guide included three sections that aim to explore the factors necessary for intervention development outlined by the BCW (Michie et al., 2014). Stage 1: Understand the Behaviour. To understand the behaviour, the first section of the interview guide included broad, open-ended questions aiming to understand outcomes and support provider role, impacted behaviours, and barriers and facilitators to behaviours. Participants were asked about the positive and negative experiences of providing care to someone with an SCI. Participants were then asked to describe behaviours they felt contributed to these positive and negative outcomes of providing support. Follow-up questions were asked to identify barriers and facilitators to discussed behaviours, with probing questions framed to explore the 14 domains of the TDF (Cane et al., 2012). Stage 2 and 3: Identify intervention and implementation options. The third section of the interview guide was aligned with Stages 2 and 3 of the BCW. These stages include identifying intervention options and identifying intervention and implementation options. This section included questions about participants’ perceptions of ideal interventions to support SCI family support providers and how they would be best delivered. Participants were asked to describe their ideal intervention in terms of the overall aim and mode of delivery (Marques et al., 2021). 54 3.2.5 Data Analysis The audio-recorded conversations were transcribed verbatim using NVivo software (QSR International Pty, 2016) and were checked for accuracy by the interviewer (RM). Data analysis prioritized the aim of co-developing a theory-based behaviour change intervention using the BCW and the needs of the research partners, aligning with a pragmatic paradigm. As such, analysis followed the three stages of the BCW. Table 3.1 provides a detailed description of the analysis approach adopted for each stage of intervention co-development, definitions for each central concept, frameworks or resources applied, and the number of coders involved at each stage. Stage 1: Understand the Behaviour Inductive and deductive analysis approaches were used to identify outcomes, behaviours, and barriers and facilitators and address Stage 1 of the BCW. Both approaches were used as deductive content analysis provided a method to identify and summarize the factors necessary for intervention development, while inductive analysis allowed for exploration of themes that may not otherwise be identified using theoretical frameworks (Hsieh & Shannon, 2005; Thomas, 2006). Both inductive and deductive analyses are described below. Braun and Clarke’s reflexive thematic analysis was adopted to inductively analyze outcomes, behaviours, and barrier and facilitator themes (Braun & Clarke, 2006, 2019). Reflexive thematic analysis occurs in six phases, including 1) familiarization with the data; 2) coding; 3); generating initial themes; 4) reviewing themes; 5) defining and naming themes; and 6) writing up and contextualizing the analysis. The inclusion of critical friends who provided insight into resulting themes based on their personal experiences and expertise strengthened the reflexive thematic analysis. Critical friends included members of the research team. Two 55 meetings were carried out with all research partners and two meetings with researchers (RM, HG, VL) The deductive analysis included extraction and coding of barriers and facilitators. Two coders (VL, RM) extracted barriers and facilitators across four transcripts. Inter-rater reliability was calculated after each transcript using percent agreement and Kappa statistic (Cohen, 1968). A single coder extracted the remaining barriers and facilitators (RM). Two coders then independently coded barriers and facilitators for each transcript using the TDF (Cane et al., 2012). To facilitate coding, the coders co-developed notes for TDF domains that were tailored to research context and refined the notes after each round of coding (See Appendix B.2). Coders discussed their findings after each transcript, and consensus of any discrepancies was reached through conversation. When consensus could not be reached, a third expert coder (HG) was consulted with expertise in TDF coding. Inter-rater reliability was calculated using percent agreement, Kappa, and the Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) (Landis & Koch, 1977). Agreement was registered when both coders assigned the same code(s) to a barrier or facilitator. Disagreement was registered if coders assigned a different TDF code to a barrier or facilitator. Inter-rater reliability values of 0.60-0.79 indicated substantial reliability, and values above 0.80 were considered outstanding for both Kappa and PABAK statistics (Landis & Koch, 1977). Inter-rater reliability for barrier and facilitator coding was presented as one total across all transcripts to account for large differences in the number of extracted barriers and facilitators between transcripts. Finally, an adapted thematic network analysis (Attride-Stirling, 2001) was integrated with reflexive thematic analysis and deductive coding to organize data in terms of outcome-behaviour and behaviour-barrier and facilitator relationships. Generating maps and linking concepts during 56 the coding process using NVivo 12 software (QSR International Pty, 2016) was helpful to explore how outcomes, behaviours, and barriers and facilitators were interrelated. The coding practices and construction of themes aligned with reflexive analysis. For outcomes and behaviours, codes were conceptualized as basic themes which collectively generated organizing themes or sub-themes. Organizing themes were categorized into global themes of outcomes or behaviours to develop network structures (Attride-Stirling, 2001). Relationships between outcome and behaviour network structures were explored through reflexive notes, coding maps, and reviewing transcripts. Aligning with the theoretical foundations of this research using the BCW (Michie et al., 2014), barrier and facilitator codes were extracted in relation to global behaviour themes and remained tied to the global theme throughout deductive coding and reflexive analysis. Stage 2: Identify Intervention Options Prominent TDF domains were linked to intervention functions using the table included in the BCW that indicates the relationship between TDF domains and intervention functions (Table 2.2) (Michie et al., 2014, p. 113). These intervention functions were linked to policy categories using another BCW table (Table 2.7) (Michie et al., 2014, p. 113). Stage 3: Identify Implementation Options Preferred modes of delivery were extracted and independently coded by two coders (RM, EG) using the Mode of Delivery of Behaviour Change Interventions Ontology (Marques et al., 2021). 3.2.6 Research Quality A flexible list of criteria aligning with the philosophical assumption and research question was generated to evaluate the quality of this research. The eight “Big Tent” criteria for 57 quality qualitative research were used for evaluation (Tracy, 2010). These criteria included the worthiness of the topic, rich rigor, ethical considerations, and significant contribution. The selected criteria were based on an IKT and pragmatic approach and their utility in similar research (Giroux et al., 2020). Equitably partnering with SCI community organizations who were potential users of this research enhanced the worthiness of the topic. For example, the research question was derived from the needs of the SCI organization and research methods were co-developed to generate actionable knowledge to address those needs. The pragmatic paradigm enhanced the credibility and meaningful coherence of the research. Using both inductive and deductive analysis approaches supported the aim of developing recommendations for intervention development. Rich rigor and sincerity of the research was maintained using several strategies. Detailed reflexive notes were taken during interviews and each phase of data analysis. Themes and thematic networks were continuously reviewed and refined to ensure fit and representation of the data. All co-authors acted as critical friends throughout data analysis to deepen our understanding of the data (Smith & McGannon, 2018). Participants from diverse contexts with differing knowledge were included adding further depth in understanding, contributing to the resonance of the research. Ethical considerations were made to maintain participants' confidentiality and comfort in the study throughout the entire research process. Additionally, the interview guide and procedures were piloted with a person with lived experience of SCI who receives family support to ensure appropriate language and acceptability of the process. An IKT approach also addressed the criterion of significant contribution. Partnering equitably with SCI organizations throughout the research process may have enhanced the relevancy and usefulness of this research to these potential users of this research (Kothari et al., 2017). The process of partnering may also facilitate the dissemination and application of this 58 research which has been demonstrated through continued partnership in this research area (McKay et al., 2020) and planning for the next stages. 3.3 Results 3.3.1 Participant Demographics Fifteen (n = 15) semi-structured interviews were conducted over the phone by the first author in 2018. Data collection occurred prior to the COVID-19 pandemic, and analysis occurred before and during the pandemic. The mean interview duration was 1 hour 21 minutes ± 38 minutes. Ten support providers and five people with SCI who received support were included in the study. Support providers were largely partners of a person with SCI (n = 7, 70%) and women (n = 8, 80%). People with SCI primarily received support from partners (n = 4, 80%), and women (n = 3, 60%). Demographic information for all participants can be found in Table 3.2. 3.3.2 Stage 1: Understand the Behaviour Outcomes Four themes were constructed describing the positive and negative outcomes of the support-providing role. These themes included 1) interpersonal dynamics, 2) intrapersonal outcomes, and 3) physical impacts of caring. Interpersonal Dynamics. The outcome of interpersonal dynamics relates to the impact of SCI and the support providing role on the relationship between the person providing support and the person receiving support and changes in social roles. Relationship dynamics between friends, family members and other sources of social support beyond the person with SCI were also described as being associated with the onset of SCI and the support providing role. 59 The changes between the person providing and receiving support included changes in physical relationships between romantic partners. The following quote describes the negative shift in the physical and emotional relationship between partners. I just got to the point where I'm like, I just can't do this anymore. I know it's supposed to be about him too, but I don't know. When that's all there is, and that's all there can be, is you doing that and you have to do all the work with that as well, it's... it messes with your head honestly. It really messed with my head. (Support Provider, Wife) Conversely, some people felt a sense of strengthened connection or bond associated with the support-providing relationship, as described in the following quote. For me personally he's just my dad, like in my mind that's just what dad's do, but for like other people they're like well dads usually don't do all of that. Yeah. Because some people don't even have a relationship with their dad, they don't talk to their dad the way I do. (Person with SCI, Daughter) Relationships beyond the support providing role were implied to be affected with many people feeling socially isolated and uncomfortable reaching out for support as described by this participant. Like it’s very lonely and isolating because nobody can understand. So, you have to like... If you want friends you have to put on a happy face, right. And like I don't want to not ever have friends so I'll be happy, but um, yeah, it's lonely. (Support Provider, Wife) Family support providers and people with SCI described the traumatic or sudden onset of SCI translating to a shift in social roles in relation to the division of tasks and priorities. This shift often resulted in family support providers balancing multiple roles and negotiating new roles within the family or partnership. 60 It's mostly, mostly emotional support, and a lot of helping out with the stuff she can't do with the kids anymore. Um, certain activities like playing outside. A lot of that is more difficult now, and we have a big, a big yard and stuff where we live now. She loves to be out there but it's hard for her to do that, so a lot of the time I'm out there doing that with [the kids]. (Support Provider, Husband) Intrapersonal outcomes. Taking on the support provider role was associated with a plethora of emotions related to the injury, lifestyle changes, and changes in perspective. Many support providers felt a sense of guilt relating to their own physical abilities. For example, many support providers described struggling to participate in activities they used to enjoy that were no longer accessible as a support provider discussed in the following quote. Um, I had to for years I wouldn't do things because he couldn't do them, so I didn't do them either. And I stopped doing that, but that's survivor’s guilt. But it makes you feel kinda crappy when you're like, "well I'm going to do this anyways because I can" and then you're like "I'm a b*** because I'm doing this" (Support Provider, Wife) At times, this struggle was related to feeling the need to be there for their loved one with SCI as described in the quote below. Just feeling like the stress managing time. That’s, that's really it. I felt like I didn’t have the time to do it. Like I should be doing something else, I should be helping out with [my wife] or helping out with the kids, feeling kind of guilty (Support Provider, Husband) The feeling of needing to be there to support a loved one with SCI was also associated with a sense of powerlessness. The following quotes describe the desire to change circumstances related to a loved one’s SCI while feeling a lack of ability to do so. Uh, I think the hardest thing for me is not being able to make it better. Like I can do as much as I possibly can to help her in her day-to-day life to make it more normal but nothing I can do is gonna make it better and that’s a, a tough pill to swallow. (Support Provider, Husband) 61 As a- as a mother you know always want to fix everything and this is just something that I cannot fix (Support Provider, Mother) Many support providers described the pervasiveness of the injury and dramatic change in life circumstances as the loss of a life they once knew. The following quotes describe a sense of grief or mourning of life prior to SCI. When somebody dies, you grieve and move on right, but the thing with an injury like this, especially a higher one that is so permanent, where you're in this limbo stage where you don't get to move on because it's not over, but you're still grieving because it's a lot and you're faced with it every day. I don't know if that makes sense. It's called... what's it called... anticipatory grief? It's kind of like if there is somebody who is terminally ill and it doesn't end and it doesn't stop, it's just your every day. It's not like you can say 'oh my spouse died and I'm sad and I've moved on but I'm so sad' because it’s like, you know, the physical part, that part of my life is gone (Support Provider, Wife) I feel that you know by now he would have been married and maybe a baby on the way and you know that’s- that’s been a huge loss for us for me right as a mom (Support Provider, Mother) The sense of loss and change was also associated with feeling misunderstood by others without similar lived experiences, as described in the quote below. It is not an easy life and nobody understands it and that's what makes it tough. There's not a lot of people who are like 'oh yeah', you join mom's groups or whatever when you have a baby because it's like people who are in the same situation and you can support each other. There's people who understand, but you're on your own. There's a couple of Facebook groups, but other than that there's really not a lot. (Support Provider, Wife) While some support providers experienced life changes related to SCI as a loss, others gained a new perspective or sense of self. This perspective was described as a deeper sense of empathy, vigour for life, or newfound independence. This shift in perspective experienced by one family is described in the following quote. 62 Realizing that people with various disabilities, how challenging it is. Just really opened up for both of us, just how lucky we are but also how grateful we are and how much kindness and love there is out there of people wanting to help us and support us, um, this last year. If this didn't happen, yeah maybe yeah, we would just be living life without knowing out there, what is Spinal Cord Injury and what it is like to have mobility. (Support Provider, Wife) The Physical Impact of Caring. The physically demanding nature of providing care to someone with an SCI was described as contributing to pain, injury, and/or disability for the support provider. The following quote describes the physical impact of caregiving activities. Um I physically couldn't do it- like [my sister-in-law] can't transfer herself um we have to do her physical maintenance personal care is very um difficult there- there were large stretches where I did do it on my own um at first and it just was really really wearing and damaging to me personally and so I can't go there anymore (Support Provider, Sister-in-Law) Behaviours Four behavioural themes described as being impacted by the support provider role were constructed. These themes included 1) leisure time and daily activities, 2) accessing supports and resources, 3) providing care, and 4) intimacy. Leisure time and daily activities. Leisure time and daily activities included behaviours and activities engaged in for enjoyment or were considered to be self-care. An example of leisure time activity included going on vacation as described in the following quote. Although my husband and I have gone on holidays we've gone for a couple of weeks at one point but that’s the longest we've ever left [Sister-In-Law] and we haven't done that for.. hmm a couple of years now (Support Provider, Sister-In-Law) Some support providers described leisure time activity as time alone or socializing, as described by the following quotes. 63 I've even like gotten a hotel room by myself for the night, just because I needed to get away and I just like got junk food and rented pay per views and watched movies and stuff. (Support Provider, Wife) Since then she's started seeing her friends more, like going for tea or uh, doing whatever like there's a group in our neighbourhood here where her friends do a spaghetti dinner every third Friday of every month. So she's going back to that and getting dinner. Um, stuff like that. I can't go because I can't get in there, but that doesn't mean that she shouldn't go, so she's started going back (Person with SCI, Husband) Employment was another aspect of leisure time activity viewed as being impacted by the support providing role. In some cases, returning to or leaving employment was necessary, while for others, it was used as a coping mechanism as described by the following support provider. I got a part-time job in retail just so I could get out and do something. Um, and yeah, it was something that was just mine and was for me. (Support Provider, Wife) Accessing Supports and Resources. Support providers discussed the importance and changes of accessing additional supports and resources to cope with the emotional and practical implications of SCI, including counselling, friends, family, community, and formal care aids. As described in the following quote, access to these resources presented a shift in responsibilities for many support providers that came with its own unique challenges. “I'm going to do all his care, I don't want anybody else to do it blah blah blah blah"; you need that break, that's important and I learned that. But it's so important to have that break, and you shouldn't do that part of it and be a wife, and ... but also one of the hardest parts for me has been having a caregiver come into my house every day. And into my bedroom. (Support Provider, Wife) Providing Care. Providing emotional and practical support was a ubiquitously described behaviour among support providers and persons with SCI. The amount of physical support 64 provided differed significantly across support providers. In some cases, support providers provided sole physical support. In other cases, this support was shared with other family members or hired caregivers as described below. Um... I do some of his night care. Well, in the morning we get up deal with the kids, get him some coffee. We have a caregiver that comes in every morning for about two hours and they do like shower and bowel routines, stuff like that, so I don't have to do that. (Support Provider, Wife) Intimacy. Some partners who provided or received support discussed changes in their intimate relationship following SCI. Couples described sexual intimacy as something that was no longer normal. In these cases, the change in the physical relationship was described as a point of contention, while others found new strategies for physical intimacy as described below. It’s a lot to do with passion and physical relationship. And um, that's what bothers him, and it can't be normal (Support Provider, Wife) Sort of, uh, the sexual part of our relationship has, um, yeah, I mean that’s changed. Its getting a lot better now. We're both pretty open to working with what we've got now which is nice. (Support Provider, Husband) Relationship Between Behaviours and Outcomes. Thematic analysis notes and revision of the transcripts suggested that behaviours were associated with all outcomes with two exceptions. Leisure time activity and intimacy were not found to be related to the physical implications of caring. The relationship between outcomes and behaviours is depicted in Figure 3.1. Barriers and Facilitator Coding Interrater reliability for barrier and facilitator extraction for four transcripts was 96.46% (SD = 2.81%). A total of 248 barriers and facilitators were extracted across all transcripts with a mean of 17.47 (SD = 11.19) per transcript (min = 0, max = 40). Of all extracted barriers and facilitators, 162 were associated with Leisure Time Activity, 39 with Accessing Supports and 65 Resources, 33 with Providing Care and 14 with Intimacy. All barriers and facilitators were coded to at least one TDF domain. Eleven of the 14 TDF domains were coded to at least one behaviour, excluding optimism, goals, and knowledge. The average interrater reliability for TDF coding was substantial and outstanding (61%, Cohen’s Kappa 0.74, PABAK 0.93). The number and proportion of barriers and facilitators associated with each behaviour and TDF domain can be found in Table 3.3 and Figure 3.2. The relationships between barriers and facilitators and behaviours are depicted in Figure 3.1. The most prominently discussed behaviour across all transcripts was leisure time activities. As such, only barriers and facilitator themes related to leisure time activity are reviewed in the discussion section. Barriers and facilitators to the other behavioural themes can be found in the Supplementary Files (See Appendices B.3, B.4, and B.5). Across all transcripts, the five most prominent TDF domains identified as influencing leisure time activity included Environmental Context and Resources (n = 40, 24.7%), Beliefs about Consequences (n = 36, 22.2 %), Emotions (n = 27, 16.7%), Intentions (18, 11.1%), and Social Influences (16, 9.9%). Table 3.4 includes a summary of the prominent TDF domains and associated themes for leisure time activity. 3.3.3 Stage 2 and 3: Identify Intervention and Implementation Options When TDF domains were linked to intervention functions, all intervention functions were deemed relevant to promoting leisure time activities among family support providers of people with SCI. Education, persuasion, enablement, and model were most commonly linked to TDF domains. All policy categories were considered relevant when linking intervention functions to policy categories. 66 A total of 34 excerpts describing modes of delivery were extracted across all transcripts with 52 Layer 1 mode of delivery codes. Coding agreement using the Mode of Delivery Ontology (Marques et al., 2021) was outstanding (68.38% , Kappa = 0.80, PABAK = 0.97). When describing the delivery of an ideal program or intervention for family support providers of people with SCI, almost all modes of delivery highlighted information delivery (30, 57.7%) through human interaction (24, 70.6%) and specified face to face (14, 34.0%) or at a distance (3, 12.5%). One participant described electronic information delivery via website (1.9%). Participants also described individual (6, 10.9%), pair-based (3, 5.8%), and group-based (14, 2.9%) intervention delivery. Descriptions of ideal modes of delivery related to the need for peer support or support from others with a shared lived experience as described in the following quotes. Because he does talk to people who have children with disabilities. I know that he feels more comfortable with them, there's less stuff that he has to explain or like you know… they just have an easier time relating with each other without needing to spend a lot of time talking about something. (Mode of Delivery: Human Interaction, Support Receiver, Child) Yeah, a lot of the emotional aspects of it. I feel like it would help to alleviate a lot of the loneliness if there were somebody who you could talk to and say 'I hate it when blah blah blah blah happens!' or whatever, and just be like I know what you mean, and just have somebody who is in the same situation that can empathize and relate to you. Like basically like a support group. (Mode of Delivery: Human Interaction, Group-Based, Support Provider, Wife) Participants also described the need for a network of people to provide social and practical support, as highlighted by the following participants. We have a- a- support- spiritual support group that helps us financially for the first year that we were home. So that was huge. And we had a cultural support group that our spiritual support group that came in and made meals for us for the next two years and they came in once a week 67 and they would make whole week's worth of meals. So I, I didn't have to do that I just took care of my wife I didn't have to worry about cooking and stuff that went on for another two years after we got back. (Mode of Delivery: Group-Based, Support Provider, Husband) Like have a network of people who can practically help you in practical ways, because... yeah. I, uh, remember a few years ago, posting that I needed something fixed under the deck and where I needed like a man. It was a man job, I needed a man to get it done. And there were so many people who were like 'I'm praying for you' and I almost was losing my shit. I don't need anybody to pray for me right now, but thank you. I needed something practical and needed somebody to actually physically crawl under my deck and patch up this hole that my husband can't do. (Mode of Delivery: Individual-Based, Support Provider, Wife) Participants also stressed the importance of support from professionals, as in the following quote. I think it would be helpful to have couples counselling or family counselling you know that kind of thing because you know although I think I've got a pretty good handle on it sometimes trying to work with the rest of you know people is kind of difficult it would be nice if we were I felt more of a team effort (Mode of Delivery: Human Interaction, Support Provider, Husband) 3.4 Discussion This study provides direction for the co-development of future theory-based behaviour change interventions for family support providers of people with SCI. These findings provide a theoretical understanding of the outcomes and behaviours impacted by the family support provider role in the context of SCI. The results highlight the relational, emotional, and physical outcomes of providing support to someone with an SCI. Interventions should likely target leisure time activities, caregiving activities, accessing support, and intimacy to influence these outcomes. This study suggests that interventions should address barriers related to opportunity (environmental context and resources) and motivation (beliefs about consequences, emotions, and intentions) to promote leisure time activities. Below, the findings related to each stage of intervention design using the BCW are discussed and contextualized within the literature. 68 3.4.1 Stage 1: Understanding the Behaviour Outcomes Consistent with previous research, these results indicate that taking on the support provider role was associated with outcomes at an interpersonal and individual level (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020). Extensive research has examined the impacts of SCI and family support providing on interpersonal dynamics ranging from the build-up to breakdown of relationships between support providers and people with SCI (Chan, 2000a; Jeyathevan et al., 2019). This research also suggests these outcomes extend to feelings of social support beyond the family or couple unit (Rodakowski et al., 2012, 2013). The negative outcomes identified on an individual level align with family support provider literature across chronic conditions, including feelings of isolation, grief, and guilt (Nieboer et al., 1998) and the impact of caregiving activities on physical health (Smith et al., 2016). The analyses also revealed the positive aspects of providing support, which receive less attention in the literature, including gaining a sense of resilience, independence, or gratitude (Boschen, Tonack, et al., 2005; Boschen & Gargaro, 2009). Taken together these findings, highlight the need to evaluate the impact of interventions on multiple outcomes as this research suggests that the support provider role may be associated with outcomes in many facets of support providers' lives. Behaviours Many behaviours were described as being impacted by the support provider role, revealing multiple promising targets for behaviour change interventions, including leisure time activities, caregiving activities, accessing support, and intimacy. Restriction or pronounced changes in leisure time activities were commonly discussed among participants and are frequently reported in the context of family support in SCI (McKay et al., 2020) and across 69 chronic conditions (Omiya et al., 2021; Pendergrass et al., 2017; Schüz et al., 2015). Importantly, reduced engagement in leisure time activities has been associated with increased rates of depression, decreased mental health, and decreased cardiovascular health in family support providers (Mausbach et al., 2012; Pendergrass et al., 2017; Schüz et al., 2015). The act of providing support to someone with an SCI was also a predominant theme in this study (Smith et al., 2016). These findings highlight the need to build capacity in this area as family support plays a vital role in the rehabilitation of people with SCI (Boschen, Gargaro, et al., 2005; Jeyathevan et al., 2020; Smith et al., 2016). Enhancing support providers’ skills and access to support and resources such as formal caregiving services or help from friends and family may influence the extent and nature of care provided by family support providers (Jeyathevan et al., 2020). Caregiving load has been strongly associated with outcomes of depression, burden, and physical health (Gajraj-Singh, 2011; Pearlin et al., 1990). Participants extensively described the benefits of accessing resources such as counsellors, friends, family for emotional support (Jeyathevan et al., 2020). Social support, particularly support from professional counsellors, has been shown to improve coping and resilience among family support providers (Elliott et al., 2014). Intimacy, a behaviour specific to romantic partners, was described as critical by all those who discussed this behaviour. This finding is not unexpected as many forms of intimacy change following an SCI (Stoffel et al., 2018). Importantly, finding strategies to adjust to these changes may strengthen relationships (Jeyathevan et al., 2019; Williamson et al., 1998). Barriers and Facilitators Key TDF domains were associated with leisure time activities and accessing supports and resources related to opportunity (i.e., environmental context and resources, social influences) and 70 motivation (i.e., beliefs about consequences, emotions, intentions) to perform the behaviour. These findings are consistent with previous research that suggests that family support providers may indirectly experience many of the same barriers as people with SCI due to inaccessibility of the physical environment (i.e., environmental context and resources) and the nature of the support provider-recipient relationship (i.e., social influences, emotions) (Cobb et al., 2018). Social influences may pose an additional opportunity barrier related to a sense of support or stigma, which are consistently seen as barriers to leisure time activities (McKay et al., 2020; Omiya et al., 2021) and accessing support and resources (Lynch & Cahalan, 2017; Smith et al., 2016). In addition to addressing accessibility and social barriers, this research highlights the notable lack of available resources for family support providers (Smith et al., 2016). Given that capability did not appear to be a prominent influence on these behaviours, these findings suggest that interventions should apply theories that emphasize reducing environmental and social barriers while addressing individual-level motivational barriers. Capability, opportunity, and motivation were found to influence caregiving activities and intimacy. Identifying the TDF domain of skills in both behaviours illustrates that training may be necessary to facilitate support providers’ ability to manage the physiological and functional implications of SCI. This finding was further highlighted by the discussion of the essential support from sexual health practitioners, nurses, and other health professionals in developing strategies in both caregiving and intimate behaviours. Following an SCI, support from health professionals is considered crucial in facilitating coping and resilience in family support providers after an injury (Elliott et al., 2014; Smith et al., 2016). However, the barrier of environmental contexts and resources suggests that such resources may not be universally available. This finding demonstrates the importance of developing resources that include training 71 to address barriers to caregiving and intimacy and the urgent need to ensure they are easily accessible. Social influences and emotions appeared to play a significant role in the behaviour of intimacy. This finding aligns with previous research that suggests adapting to changes in physical and emotional forms of intimacy requires openness and communication between partners (Anderson et al., 2007; Jeyathevan et al., 2019). Although few participants discussed this behaviour and its influencing factors, the urgency with which this behaviour was discussed underscores the importance of developing interventions to support intimacy after SCI. 3.4.2 Stage 2 and 3: Identify Intervention and Implementation Options The relevance of all intervention functions and policy categories suggests that multiple and varied intervention approaches may need to be taken to address barriers experienced on an environmental, interpersonal, and individual level across behaviours. Regardless of behaviours, social support, specifically from those with shared lived experience, was considered critical by most participants. Social support and communication are frequently reported as a significant unmet need among family support providers of people with SCI (McKay et al., 2020; Rodakowski et al., 2012; Sibalija et al., 2018). Additionally, this form of support has shown significant benefit for people with SCI (Chemtob et al., 2018; Rocchi et al., 2018) and promise as a mode of intervention delivery (Barclay & Hilton, 2019). These findings indicate that human interaction-based based-delivery either via peers or with peers may be strategic to address multiple unmet needs among family support providers. 3.4.3 Recommendations for Intervention Development Theories that address environmental and motivational barriers may be useful for developing behaviour change interventions for family support providers of people with SCI. This 72 finding is consistent with the few existing interventions which emphasize problem-solving therapy (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016). This approach provides a mechanism to foster skills to overcome social and environmental barriers and cope with individual-level motivational barriers (Dreer et al., 2007; Elliott et al., 2008; Elliott & Berry, 2009). These findings also highlight the need for social support and the importance of shared lived experiences. As such, human-delivered interventions may be useful for family support providers of people with SCI, and the involvement of peers may be a beneficial mode of delivery to explore. In addition to individual-level behaviour change interventions, this research also underscores the urgent need for readily available resources to enable family support providers to adjust to life following an SCI, particularly in the domains of caregiving and intimacy (McKay et al., 2020; Smith et al., 2016). 3.4.4 Strengths and Limitations This research examined the behaviours impacted by the family support provider role through a behaviour change lens. The use of the BCW provided a framework to guide the research methodology and analyses to co-develop evidence-based recommendations for behaviour change interventions. The qualitative approach allowed for an in-depth and contextualized exploration of the factors necessary to develop an intervention using the BCW. Adopting an IKT approach may have strengthened these recommendations as partners who may implement this research tailored the research question and methodology to the context of their community organizations and contributed their unique expertise to the data analysis. As such, research findings may be more relevant and readily implemented by community partners. In addition to these strengths, several limitations may impact the interpretation of these findings. Participants in this study were primarily white women who were heterosexual partners 73 of a person with SCI. The experiences of these participants may not reflect the needs of the broader family support provider population. Additionally, all participants were recruited through three SCI community-based organizations. Thus, we do not know if there is transferability of these findings for developing interventions across the SCI family support provider population or those not associated with community-based organizations (Smith & McGannon, 2018). This limitation highlights the challenges associated with reaching the hardly reached and developing interventions to reflect these individuals’ needs. More work is needed to enhance the diversity of study examples to understand differences in needs. Interpretations of the frequencies to assess outcomes, behaviours, barriers and facilitators, and implementation options should also be approached with caution as frequency does not imply importance in all cases. 3.5 Conclusion This study illustrates the application of the BCW to explore outcomes and behaviours associated with the family support provider role in the context of SCI. Findings suggest leisure time activities may be a promising target behaviour for behaviour change interventions. Theories which address opportunity and motivation barriers may be useful in promoting these behaviours. This research provides a critical first step to the development of sorely needed theory- and evidence-based behaviour change interventions for family support providers of people with SCI. 74 BCW Stage Extracted and analyzed factor Factor definition Analysis Approach Theoretical Framework # of Coders Stage 1: Understand the Behaviour Outcomes Something that follows as a result or consequence of the support-providing role (Outcome, n.d.). Reflexive thematic analysis (Braun & Clarke, 2006, 2019) - 1 (RM) Behaviours An observable way in which someone acts or conducts themselves in response to the support providing role (Behaviour, n.d.; Michie et al., 2014) Reflexive thematic analysis and thematic network analysis (Braun & Clarke, 2006, 2019) - 1 (RM) Barriers and Facilitators Any factor, view, characteristic or belief that impedes or promotes a behaviour associated with the support provider role Deductive Coding TDF (Cane et al., 2012) 2 (RM, VL) Reflexive thematic analysis and thematic network analysis (Braun & Clarke, 2006, 2019) 1 (RM) Relationship between outcome, behaviours, and barriers and facilitators - Thematic network analysis (Attride-Stirling, 2001) 1 (RM) 75 BCW Stage Extracted and analyzed factor Factor definition Analysis Approach Theoretical Framework # of Coders Stage 2: Identify intervention options Intervention Functions Broad categories of means by which an intervention can change behaviour (Michie et al., 2014) Linked identified TDF domains to intervention functions BCW (Michie et al., 2014) - Policy Categories Categories of policies that would support the delivery of intervention functions (Michie et al., 2014) Linked relevant intervention functions to policy categories BCW (Michie et al., 2014) - Stage 3: Identify intervention content and implementation options Mode of Delivery Method or methods by which the content (e.g., BCTs) is brought to its target population (Marques et al., 2021) Deductive Coding Mode of Delivery Ontology (Marques et al., 2021) 2 (RM, EG) Table 3.1 Analysis approach by BCW stage 76 Provider (n = 10) Receiver (n = 5) Total (n = 15) Age Mean (SD) 50.9 (11.3) 43.6 (10.9) 48.3 (11.3) Gender, % (n) Female Gender 70% (7) 60% (3) 66.7% (10) Male Gender 30% (3) 40% (2) 33.3% (5) Ethnicity, % (n) White 80% (8) 80% (4) 80.0% (12) Asian 20% (2) 0% (0) 13.3% (2) Indigenous 0% (0) 20% (1) 6.7% (1) Relationship to Person with SCI/ Support Provider, % (n) Partner 80% (8) 80% (4) - Parent 20% (2) 0% (0) - Child 0% (0) 20% (1) - Extended Family 10% (1) 0 (0%) - Province, % (n) Alberta 40% (4) 40% (2) 40.0% (6) British Columbia 50% (5) 60% (3) 53.3% (8) Ontario 10% (1) 0% (0) 6.7% (1) Years Providing/Receiving Support, Mean (SD) 5.9 (3.8) 13.6 (13.7) 8.5 (8.8) Education, % (n) High-School 10% (1) 20% (1) 13.3% (2) College 60% (6) 40% (2) 53.3% (8) University 20% (2) 20% (1) 20.0% (3) Post-Graduate 10% (1) 20% (1) 13.3% (2) Marital Status, % (n) Married 90% (9) 80% (4) 86.7% (13) Separated 10% (1) 0% (0) 6.7% (1) Single 0% (0) 20% (1) 6.7% (1) Associated with SCI Organization, % (n) Yes 20% (2) 100% (5) 46.7% (7) No 80% (8) 0% (0) 53.3% (8) Family Support Provider Training in Caregiving, % (n) Yes 20% (2) 0% (0) 13.% (2) No 80% (8) 100% (5) 86.7% (13) Demographics of Person with SCI Receiving Support Injury, % (n) Tetraplegia 30% (3) 60% (3) 40.0% (6) 77 Paraplegia 70% (7) 40% (2) 60.0% (9) Complete 30% (3) 20% (1) 26.7% (4) Incomplete 70% (7) 60% (3) 66.7% (10) Years with SCI Mean (SD) 9.9 (11.0) 14.4 (13.1) 11.4 (11.5) Provider (n = 10) Receiver (n = 5) Total (n = 15) Mobility, % (n) Manual Wheelchair 70% (7) 40% (2) 60.0% (9) Powerchair 30% (3) 60% (3) 33.3% (5) Injury Cause, % (n) Motor Vehicle Accident 50% (5) 20% (1) 40.0% (6) Recreational Accident 20% (2) 40% (2) 26.7 (4) Fall 10% (1) 0% (0) 6.7% (1) Congenital/Illness 30% (3) 40% (2) 33.3% (5) Table 3.2 Participant demographics 78 Table 3.3 TDF Domains by behaviourTDF Domain Behaviour Leisure Time Activity [n (%)], n = 162 Accessing Supports and Resources [n, (%)], n = 39 Providing Care [n, (%)], n = 33 Intimacy [n, (%)], n = 14 Environmental Context and Resources 24.7% (40) 30.9% (12) 39.4% (13) 18.7% (3) Beliefs about Consequences 22.2% (36) 12.8% (5) 6.0% (2) 0% (0) Emotions 16.7% (27) 7.7% (3) 6.0% (2) 31.2% (5) Intentions 11.1% (18) 15.4% (6) 6.0% (2) 0% (0) Social Influences 9.9% (16) 17.9% (7) 3.0% (1) 31.2% (5) Behavioural Regulation 6.2% (10) 0% (0) 0% (0) 0% (0) Social/Professional Role or Identity 4.9% (8) 7.7% (3) 15.2% (5) 0% (0) Skills 0% (0) 0% (0) 24.2% (8) 6.2% (1) Reinforcement 1.9% (3) 5.1% (2) 0% (0) 0% (0) Memory, Attention, Decision-Making Process 1.2% (2) 2.6% (1) 0% (0) 0% (0) Beliefs about Capabilities 1.2% (2) 0% (0) 0% (0) 0% (0) 79 TDF Domain Theme Theme definition Sample Quote Environmental Context and Resources Accessibility The impact of the built physical environment (B) So the social isolation is also a huge concern. You know, [husband] can't go to any of our friends’ places anymore, and none of them are wheelchair accessible. (B) (Support Provider, Wife) Time and resources Lack of time and financial resources due to timely and costly caregiving activities limit participation activities (B). Additional resources (e.g., care-aids, friends, family) may increase time, flexibility, and accessibility to carry out leisure time activities (F). You don't have time to go and do anything (B) (Support Provider, Wife) So there are lots of people that are looking after me, so that I think that's really when my wife gets out because it really isn't all on her. Because they are here and they do help out. And they are more and more willing too. So, you know, we're just really lucky that way too right because it means she can go and do something and often the two of them are here, they um, that's fine (F) (Person with SCI, Husband) Flexibility (In)flexibility in work and living contexts (B,F) The kids make it hard yeah sometimes, when they're not, I don't know, when they're not doing cooperating as nicely as they could, that can make it more difficult (B) (Support Provider, Husband) This job is perfect because its very flexible he could do work at home he could do work if he really if he really wants to go to the curling rink he can do work there whatever so its actually a really good job (F) (Person with SCI, Wife) 80 TDF Domain Theme Theme definition Sample Quote Beliefs about Consequences Belief that something will happen Support providers past experiences have contributed to the belief that something harmful could happen in their absence (B) He had an autonomic dysreflexia at one point and uh yeah so that makes me a little more nervous to do those kinds of things because I know that when stuff goes sideways its harder for others to sort of know what to do in a hurry (B) (Support Provider, Mother) Acknowledging the benefits The belief that engaging in self-care or leisure time activity will be of benefit (F) When I start feeling resentment for doing some kinds of little things I know its time to go do something else sometimes its not so drastic as going on vacation but it really does help to reset um my attitudes about how things are going if I can change the scenery for a while (F) (Support Provider, Wife) Emotions Worry or sense of anxiety that something will happen Feelings of fear and anxiety about what would happen in support provider’s absence (B) But I think she's had too much fear that something would... even if she wasn't here and something horrible would happen and she wouldn't be here to fix it (B) (Person with SCI, Husband) Shifting emotions and /or perspective Emotions or perspective motivates or demotivates engagement in leisure time activities (B,F) You're isolating yourself because you're so angry (B) (Support Provider, Wife) It was to the point where I had to pick something to be thankful for, and even if it was for something stupid like the sun looks pretty today, just something. And I kind of just clawed my way out of it, and the more I did that the more I felt like going out and being social and talking to people (F) (Support Provider, Wife) 81 Guilt Feelings of guilt associated with doing activities independently or leaving someone alone (B) a lot of it for me was just the guilt, of trying to make time for myself and not feeling like I could do that (B) (Support Provider, Wife) Intentions Shifting priorities Weighing the importance of one’s needs versus the needs and priorities of others (F) What makes it easy? Nothing makes it easy. Yeah. What helps facilitate it is that I know that I need to do something for me. It's a way of me taking some time for myself without having just to have some time for me not to worry about all the other things (Support Provider, Wife) Social Influences Encouragement from others Encouragement or a "push " from others to make changes (F) What helps? Us forcing him too. To be honest, we could tell him that we have everything, or this is just extra money and he could just go. Or to go for a drive. That's something he does for himself is he'll go for a drive. (F) (Person with SCI, Daughter) Expectations and perceptions of others The ideas or perceptions of others (B, F) I believe that [my husband] is not going to value that (going to a park) as much as going to a workshop for caregivers. So there's some inherent value in where I'm going that's going to benefit the household. So it's OK to go to those things. And so to add that little bit of time where I have my coffee, I'm sitting in the park and going to have a cigarette and f*ck the rest of the world. That's easier to add on to something that I believe others value (B, F) (Support Provider, Wife) Table 3.4 Leisure time TDF themes 82 Figure 3.1 Relationship between outcomes, behaviours, and TDF domains Note. Abbreviations: ECR=Environmental Context and Resources; BCon = Beliefs about Consequences; SPRI = Social/Professional Role or Identity; 83 Note. Abbreviations: BReg= Behavioural Regulation; BCon=Beliefs about Consequences; BCap=Beliefs about Capabilities; ECR=Environmental Context and Resources; SPRI = Social/Professional Role or Identity; SI = Social Influences; MADP = Memory, Attention, Decision Making Process; Rein = Reinforcement.Figure 3.2 Proportion of TDF and COM-B domains by behaviour 84 Co-Designing A Theory-Based Intervention to Promote Leisure Time Activities Among Family Support Providers Of People With Spinal Cord Injury: Applying Reporting Guidance To Describe The Co-Design Process 4.1 Overview Spinal Cord Injury (SCI) is a chronic condition that is defined as damage to the spinal cord due to illness or traumatic injury that may result in partial or complete paralysis (Kirshblum et al., 2011). People with SCI often receive support from family members or friends to assist with the physiological changes and secondary conditions associated with injury and address social and environmental barriers (Foster et al., 2005; Smith et al., 2016). While there are many mutual benefits to supporting someone with an SCI, providing this support may have a negative impact on the mental and physical health of family support providers (Elliott et al., 2014; Smith et al., 2016). Family support providers of people with SCI often experience restrictions in leisure time activities (e.g., (Beauregard & Noreau, 2009; Ellenbogen et al., 2006)) which has been associated with increased rates of depression, poor mental health, and increased risk for cardiovascular events (Mausbach et al., 2008, 2012; Schüz et al., 2015). Despite these findings, very few interventions exist to promote leisure time activities in this population (McKay et al., 2020). Therefore, rigorously designed behaviour change interventions are urgently needed. Theory-driven and co-design are two of the most common and widely promoted intervention design approaches (Davey et al., 2015; Glanz & Bishop, 2010; O’Cathain et al., 2019; Painter et al., 2008; Prestwich et al., 2014). Theory-driven approaches can be guided by frameworks such as the Behaviour Change Wheel (BCW) which was developed from a synthesis of 33 behaviour change frameworks across 83 behaviour change theories. The BCW outlines 85 three key steps to developing a theory-based intervention, including 1) understanding the behaviour, 2) identifying intervention options, and 3) identifying intervention content and implementation options. Together, these steps provide a systematic and evidence-based method to develop theory-driven behaviour change interventions. The strength of using behaviour change theories and frameworks such as the BCW is that theories propose hypothesized causal pathways of behaviour change (i.e., understanding the behaviour) that may guide the selection of potentially effective intervention content (i.e., identifying intervention options and content) (Michie et al., 2017). These hypothesized pathways are driven by mechanisms of action, which are conceptualized as the theoretical constructs through which intervention content such as behaviour change techniques (BCTs) act to change behaviour (Michie et al., 2017). Linking BCTs to their mechanisms of action using frameworks such as the BCW and reporting on these links allow interventionists and evaluators to leverage this evidence-based roadmap to evaluate, replicate, and translate potentially effective behaviour change interventions. Theory-based approaches to intervention development are often used in conjunction with co-design approaches which involve developing interventions in partnership with research users (Knowledge Translation Strategy 2004-2009, 2004; O’Cathain et al., 2019; Sibbald et al., 2014). Integrated Knowledge Translation (IKT) is a co-design approach growing in recognition in behaviour change research (Graham et al., 2007). IKT involves equitably partnering with research users (e.g., persons with lived experience, decision-makers, health system leaders, policy-makers) in decision-making throughout the development process and the application of knowledge (Kothari et al., 2017). There are a host of suggested benefits of IKT, such as contextualizing interventions through insider knowledge and building partner capacity (Camden 86 et al., 2015; Gagliardi et al., 2016). However, evidence of these benefits is limited as co-development processes are underreported and thus, understudied (Boland et al., 2020; Camden et al., 2015; Gagliardi et al., 2016; Hoekstra et al., 2020). Reporting on the process and approaches used to design a behaviour change intervention is critical to understanding what makes an intervention work and improving intervention development processes. Improved reporting is consistently called for in the behavioural medicine and research partnership literature to address the dearth of thorough descriptions of interventions and their co-design (e.g., (Boland et al., 2020; Davey et al., 2015; Michie et al., 2009; Willmott & Rundle-Thiele, 2021)). Comprehensive reporting on the design and content of behaviour change interventions provides necessary data to determine if and, importantly, how interventions function to change behaviour (Michie et al., 2009). Despite improvements on reporting of the outcomes of behaviour change interventions indicating if behaviour change interventions elicit behaviour change (Craig & Petticrew, 2013; Moore et al., 2015), our understanding of how interventions change behaviour remains limited as reporting on the process of co-design is poor (de Bruin et al., 2020). Despite several commentaries describing why lack of reporting on the development of interventions and partnerships is detrimental to behavioural medicine and the science of research partnerships (e.g., (Boland et al., 2020; Davey et al., 2015; Michie et al., 2009; Willmott & Rundle-Thiele, 2021)), there are few examples of comprehensive reporting on the design and/or co-design process of behaviour change interventions (Hoekstra et al., 2020; Painter et al., 2008; Prestwich et al., 2014). Therefore, this paper aims to: (1) apply reporting tools to transparently report on the theory-based co-design process used to design the intervention; and 87 (2) outline the standard of practice for a behaviour change intervention to promote leisure time activity among family support providers of people with SCI. 4.2 Methods 4.2.1 Design The intervention standard of practice was co-designed using the BCW and an IKT approach. The descriptions of the co-design process and resulting intervention standard of practice are provided in the results and structured according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist (Duncan et al., 2020). The GUIDED is a consensus-based reporting checklist developed to improve the transparency and quality of reporting of intervention development (Duncan et al., 2020). In addition to the GUIDED Framework, eight reporting tools and recommendations were applied to describe the theory-based co-design of the intervention comprehensively. These tools were selected as they aligned with the BCW and an IKT approach and provided structure and/or definitions to report on the entire co-design process. 4.2.2 Selecting Reporting Criteria to Describe the Intervention Design and Standard of Practice Reporting tools were selected by first conducting a systematic literature search of available reporting tools and selecting tools complementary to the adopted design processes. An informal literature search was conducted on May 16, 2021, in three electronic databases, including MEDLINE/PubMed, CINAHL, and Embase. An additional search was conducted across two major reporting repositories, including the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) Network (https://www.equator-network.org/), the Human Behaviour Change Project (https://www.humanbehaviourchange.org/). Formal reporting tools 88 are not yet available for reporting on IKT partnerships (Boland et al., 2020; Hoekstra et al., 2020). Therefore, the IKT Research Network (IKTRN) (https://iktrn.ohri.ca/) repository was searched for reporting recommendations. A hand search was conducted across the reference lists of all included results. The supplementary files include a completed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram (Moher et al., 2010) and a detailed description of the search terms, eligibility criteria, and screening methods (See Appendices C.1 and C.2). In total, 19 tools were identified across the data sources and included guidelines or taxonomies. Details of the search can be found in Appendix C.3. Recommendations were identified for reporting on IKT as no IKT-specific tools are currently available. For clarity, all 19 identified tools, guidelines, and recommendations will be collectively referred to as tools. Tools were characterized by the presence or absence of each of the stages of intervention development outlined by the BCW and MRC phases of intervention design (see Table 4.1) (Craig & Petticrew, 2013; Michie et al., 2014). Nine tools were ultimately selected based on relevance to the adopted intervention design approaches, including the BCW and IKT, to report on the co-design process and resulting intervention standard of practices. A table outlining the identified and selected tools and their corresponding intervention design phase can be found in the supplementary files (See Appendix C.4). 4.3 Results 4.3.1 Intervention Context, Purpose, and Population (GUIDED Items 1, 2 and 3) A research partnership consisting of executives from three SCI community-based organizations (n = 3) and researchers (n = 2) established the purpose and methods of a body of research aiming to co-develop a behavioural intervention to support family members and 89 partners of people with SCI during a series of meetings in 2016. These organizations support people with SCI and their families to adjust, adapt, and thrive after SCI and deliver peer mentorship programs in the community and hospital settings. The partnership stemmed from an existing partnership that adopts an IKT approach (Gainforth et al., 2019, 2020). Though not published at the time of this research, the partnership approach aligned with the IKT Guiding Principles for Conducting and Disseminating SCI Research in Partnership (Gainforth et al., 2020). Family support providers of SCI were highlighted as a key priority by the SCI community organizations as few resources currently exist for this population. The team aimed to identify behaviours of most concern for family support providers and develop feasibly implemented resources to address affected behaviours. To address these aims, the partnership co-conducted research in a phased approach to generate evidence and co-design an intervention guided by the BCW (Michie et al., 2014) and the Theoretical Domains Framework (TDF) which systematically integrates psychological constructs which influence behaviour into 14 domains (Cane et al., 2012). A table outlining all partnership activities and IKT guiding principles can be found in the supplementary files (See Appendices C.5 and C.6). 4.3.2 Development Approach, Data Sources, and Theoretical Rationale (GUIDED Items 4, 5, and 6). The development approach, data sources, and theoretical rationale were aligned with the three stages of intervention design outlined by the BCW as described below (Michie et al., 2014). Stage 1 – Understand the behaviour. Two data sources were used to generate and synthesize evidence on behaviours impacted by the support provider role and factors influencing those behaviours. These data sources included a scoping review (McKay et al., 2020) and an 90 interview study (See Chapter 3). Both studies were guided by the BCW (Michie et al., 2014) and TDF (Cane et al., 2012). The scoping review included a theoretical analysis of behaviours described and interventions delivered across 59 articles in the SCI support provider literature (McKay et al., 2020). The interview study consisted of 15 interviews with SCI family support providers (n = 10) and people with SCI who receive support (n = 5) exploring impacted behaviours and theoretical barriers and facilitators using the BCW (Michie et al., 2014) and TDF (Cane et al., 2012). The results of these studies were synthesized using the BCW (Michie et al., 2014) and TDF (Cane et al., 2012). Based on this synthesis of the data sources, the partnership reached consensus on a target behaviour that 1) was prominent in both data sources, 2) could be feasibly addressed by the research team, and 3) would likely elicit positive outcomes. The partnership selected leisure time activity as the target behaviour, which was broadly defined as any behaviour engaged in for enjoyment which may occur independently (e.g., spending quiet time alone) or in one’s community or society (e.g., spending time with friends) and may be considered self-care (e.g., exercise). This definition aligns with Stevens et al.’s (2004) definition of leisure as it addressed conceptual overlap between terms commonly used in the support provider and disability literature, including leisure, self-care (Petty & Trussell, 2021), and social participation (Levasseur et al., 2010). The synthesis also indicated that support providers experience barriers to leisure time activities related primarily to the TDF domains environmental context and resources, beliefs about consequences, social influences, and emotions (Cane et al., 2012; McKay et al., 2020, See Chapter 3). Definitions of these TDF domains can be found in the supplementary files. 91 Stage 2 – Identify intervention options. The BCW was used to link the barriers identified in Stage 1 to several intervention functions, including training, enablement, environmental restructuring, and modelling (Michie et al., 2014). These intervention functions were then linked to all policy categories with the BCW (Michie et al., 2014). Stage 3 – Identify intervention content and implementation options. BCTs that are commonly used to target the intervention functions and policy categories identified in Stage 2 of the BCW were linked to relevant TDF domains using the Theory and Techniques Tool (Johnston et al., 2020), as described in Table 4.2. Additional criteria for selecting these BCTs included relevancy to the intervention context, ease in training interventionists to deliver the BCTs, and evidence supporting the BCTs' effectiveness in family support provider and family caregiver interventions across various chronic conditions (e.g., dementia, stroke, brain injury, cancer). The selected BCTs were considered to be most easily delivered through a mode of delivery involving interpersonal and dyadic communication. Research suggests that support from others with similar lived experiences is a significant unaddressed need of family support providers of people with SCI (McKay et al., 2020). Peer-based programs are highly feasible for the partner community-based organizations to deliver and have shown significant promise in supporting people with SCI (Balcazar et al., 2011; Veith et al., 2006). Therefore, peer support was selected as an ideal mode of delivery. A researcher with training in BAP, motivational interviewing, and behavioural medicine was selected to test the feasibility and acceptability of the intervention before translating the intervention for peer delivery. Several existing intervention approaches that are delivered through interpersonal and dyadic communications methods informed the selection of BCTs and the design of their delivery. The scoping review indicated that existing interventions are primarily based on problem-solving 92 therapy (PST) (D’Zurilla & Nezu, 1999), which has been shown to promote positive outcomes for support providers across other chronic conditions (e.g., cancer (Applebaum & Breitbart, 2013), stroke (Cheng et al., 2014), dementia (Frias et al., 2020)). However, PST was deemed unfeasible to implement in a community-based setting due to the extensive training required to deliver PST (e.g., (Lutes et al., 2017)). Therefore, two intervention approaches were selected that broadly aligned with PST and the identified BCTs, including and Brief Action Planning (BAP) (Gutnick et al., 2014; Miller & Rollnick, 2012) and Brief Cognitive Reframing (Locke et al., 2019). BAP is a motivational interviewing-based intervention framework developed to increase the implementation of motivational interviewing by individuals lacking time and training (Gutnick et al., 2014; Miller & Rollnick, 2012). BAP was modified to include problem-solving as a required rather than an optional step to align with PST more closely. Notably, research has verified the feasibility of training peers with SCI in BAP (Gainforth, Latimer-Cheung, et al., 2015). Brief Cognitive Reframing was selected to address emotional barriers and was used as an alternative to the complex reframing technique traditionally used as a critical first step to PST (Nezu, 2004). Brief Cognitive Reframing has demonstrated improvement biased thoughts when delivered by interventionists without clinical training and was incorporated into the intervention to maintain the feasibility of delivery by peers not trained in behavioural medicine (Locke et al., 2019). 4.3.3 Decisional Priorities, Stakeholder Contributions and Modifications (GUIDED Items 8, 9, and 10) Partners in the selection and refinement of intervention content included representatives of SCI community organizations (n = 3); behavioural scientists with expertise in SCI research, 93 BAP, and reframing (n = 3); a motivational interviewing expert (n = 1); and the founder of a group aiming to support families of people with SCI with lived experience (n = 1). The representatives of the SCI community organizations were partners throughout the entire research process, including the development of the initial research question and data sources and the others partnered in the synthesis phase. To establish the intervention standard of practice, all partners reviewed the proposed intervention manual and standard of practice which was sent by email with a brief description of the rationale for the intervention content. After reviewing the manual, all partners took part in an audio-recorded telephone or in-person interview. Participants were asked to provide their overall thoughts of the intervention, recommendations for improvement, and rationale for proposed changes (Michie et al., 2014). The interview guide can be found in the supplementary files (See Appendix C.7). Responses were collated to guide changes to the proposed intervention manual. Eight audio-recorded conversations took place over the phone (n = 4) or in-person (n = 4) with a mean duration of 56 ± 62 minutes. No changes were made to the intervention standard of practice and all partners believed the intervention was ready for testing. Conversations highlighted the lack of available resources for family support providers of people with SCI and the urgent need to design and test interventions. Recommendations primarily surrounded the feasibility of the intervention with respect to training and implementation in future phases of research examining the intervention. 4.3.4 Iterations and Future Considerations (GUIDED Items 11 and 12) A feasibility study will be conducted to 1) evaluate the acceptability of the intervention, 2) evaluate the utility in promoting behaviour change, and 3) to explore potential outcomes. The aims of this feasibility study were aligned with recent recommendations by Beets et al. (2021) to 94 conduct small, preliminary studies to develop and refine the intervention process. Results from these types of small studies may indicate if the intervention warrants further pilot investigation prior to scaling to a larger trial (Beets et al., 2021; Czajkowski et al., 2015). The research partnership co-developed the methods for this pretest-posttest feasibility study, including co-developing the study design, selection of materials and measures, and analysis approach. Remaining uncertainties to address in future feasibility and/or pilot studies prior to a large-scale RCT will include, but will not be limited to, the influence of intervention delivery, required dose, and refinement of relevant outcome measures. 4.3.5 Summary of the Developed Intervention (GUIDED Item 13) The standard of practice of the adapted BAP (Gutnick et al., 2014; Miller & Rollnick, 2012) and a Brief Cognitive Reframing (Locke et al., 2019) intervention is outlined in Appendix C.9. This outlined includes intervention steps, associated BCTs (Michie et al., 2013), content and relational techniques (Hardcastle et al., 2017), and strategy source. The approved intervention for testing consisted of two 30-minute sessions scheduled one week apart to test the acceptability and usefulness of the intervention. The intervention was delivered digitally through video calls. A diagram of the resulting intervention can be found in Figure 4.1. 4.4 Discussion This paper illustrates the extensive process of co-designing a behaviour change intervention using the BCW and an IKT approach. The resulting protocol also addresses a significant gap in the literature as very few interventions have been designed to support family support providers of people with SCI and even fewer focus on leisure time activity (McKay et al., 2020). The process of identifying and applying reporting tools highlighted and addressed some of the challenges associated with reporting on the co-design process. 95 Adopting a theory-based and IKT approach to co-designing the intervention represents a significant strength of this intervention standard of practice. Using the BCW to guide intervention design provided clearly defined terminology and processes to identify mechanisms of action and link them to promising intervention strategies across various data sources (Michie et al., 2014). The transparency and systematic nature of this process will allow for ease of evaluation to understand if and how the intervention facilitates behaviour change and identify areas for improvement (Michie et al., 2017). Additionally, the equitable partnership with community partners who provide support to family support providers of people with SCI may enhance the translation and uptake of the intervention in real-world settings as it has been tailored to the community context (Gagliardi et al., 2016). Partnering with experts in areas relevant to the intervention may also improve the quality and rigor of the intervention. In addition to the strengths of using the BCW and an IKT approach, there were also limitations in their application. Using the BCW and Theory and Techniques Tool to select BCTs provided a simplistic method to identify promising and relevant BCTs. However, research linking BCTs to mechanisms of action is in its infancy, as even some of the most commonly used BCTs are inconclusively linked to mechanisms of action or not linked at all (Johnston et al., 2020). As such, the selection of BCTs required some degree of creativity. Though creativity is argued to promote the exploration of new and valuable intervention strategies (Ogden, 2016), this approach may also lead interventionists to select BCTs based on the ‘it seemed like a good idea at the time’ (ISLAGIATT) principle or use what they already know. This limitation highlights the critical need for further examination of the relationship between BCTs and mechanisms of action to understand how interventions change behaviour and enhance the evidence-based selection of BCTs (Davey et al., 2015; Michie et al., 2017). 96 With respect to IKT, this co-design process only represents one approach to IKT co-design through one partnership. This research may have benefitted from a more systematic method to co-design, such as the workshop methods used by Hall et al. (2020). However, there are not yet established best practices of IKT, so it is not clear which IKT strategies and principles may elicit the proposed benefits of IKT (Hoekstra et al., 2020). More direct partnership with family support providers of people with SCI may have strengthened the co-design of the intervention. Although the partner organizations aim to provide support to friends and family of people with SCI, these organizations are primarily connected to people and SCI, and therefore, may not directly reflect friends and families' needs. More work is needed to understand how to best partner with family support providers of people with SCI and the organizations that aim to support them. 4.4.1 Recommendations for Reporting While behavioural scientists should heed calls to adhere to the available reporting guidance and recommendations, our findings highlight several key challenges to applying reporting tools. This research further demonstrated the need for IKT-specific reporting guidance as there are minimal recommendations for consistent reporting of IKT strategies, principles, or processes. Staniszewska et al. (2017) recently developed the GRIPP2 for reporting for Patient Public Involvement which has been recommended for reporting on IKT as these two engaged research approaches share similarities (Banner et al., 2019). This checklist focuses on reporting on the theoretical underpinnings, outcomes, and impacts of engagement (Staniszewska et al., 2017). However, our understanding of these factors in IKT is lacking (Boland et al., 2020), which may limit the utility of this checklist. Further work is needed to clarify IKT theories and 97 practices to develop rigorous reporting tools and/or improve the applicability of those that already exist. Locating relevant tools was difficult as tools are located across a large number of repositories that hold a large number of tools. Additionally, some reporting tools are not located in a repository and were not identified through database searches. Subsequently, selecting and applying tools was challenging as many tools are necessary to comprehensively depict all aspects of the co-design process and the resulting intervention. Researchers may be dissuaded from extensive reporting and applying such a large number of reporting tools due to the page limits mandated by scholarly journals. System-based processes are likely necessary to improve reporting, including systemizing the location of available guidance and creating tools to help researchers sort and select tools relevant to their work. The results of the systematic search are presented in Table 4.1. Table 4.1 offers a preliminary example of selecting relevant reporting tools. While repositories such as Open Science Framework provide a platform to publish additional research content, journals must enable behavioural scientists to transparently report by increasing page limits such that the development process may be published in the main text of articles rather than in often forgotten supplementary files. 4.5 Conclusion This paper illustrates the steps required to co-design a behaviour change intervention to promote leisure time activity among family support providers of people with SCI. Using the BCW and IKT provided a comprehensive framework to guide the systematic design of an intervention. Additionally, this paper highlights a systematic approach to identify hard-to-find reporting guidance to report on the co-design of interventions comprehensively. 98 Intervention Development Phase Tool Type Theory MoAb Content Delivery DAc Guidance Taxonomy Recommendations Guidance for reporting intervention development studies in health research (GUIDED; Duncan et al., 2020) ● ● ● ● ● ● Workgroup for Intervention Development and Evaluation Research (WIDER) recommendations (Albrecht et al., 2013) ● ● ● ● ● Taxonomy of approaches to developing interventions to improve health (O’Cathain et al., 2019) ● ● Criteria for Reporting the Development and Evaluation of Complex Interventions in healthcare: a revised guideline (CReDECI 2; Möhler et al., 2015) ● ● Theory Coding Scheme (Michie & Prestwich, 2010) ● ● ● Guidance for reporting of an intervention's theory (Sidani et al., 2020) ● ● ● ● ● Theory and Techniques Tool (Johnston et al., 2021) ● ● 99 Intervention Development Phase Tool Type Intervention Development Reporting Recommendations Theory MoAb Content Delivery DAc Guidance Taxonomy Recommendations Theoretical Domains Framework (TDF; Cane et al., 2012) ● ● Intervention Taxonomy (ITAX; Schulz et al., 2010) ● ● ● ● Behaviour Change Technique Taxonomy v 1 (BCTTv1; Michie et al., 2013) ● ● Content and Relational Techniques (Hardcastle et al., 2017) ● ● Mode of Delivery Ontology (Marques et al., 2021) ● ● Form of Delivery (Dombrowski et al., 2016) ● ● Template for Intervention Description and Replication (TIDieR; Hoffmann et al., 2014) ● ● Intervention Mapping (IM) Taxonomy of Behaviour Change Methods (Kok et al., 2016) ● ● ● ● Western Journal of Nursing Research checklist for reporting of intervention (Conn, 2012) ● ● ● ● 100 Intervention Development Phase Tool Type IKT Specific Reporting Recommendations Theory MoAb Content Delivery DAc Guidance Taxonomy Recommendations Review of review of research partnerships (Hoekstra et al., 2020) ● ● IKT Guiding Principles (Gainforth et al., 2020) ● ● a● indicates guidance present in tool or tool purpose; bMoA = mechanisms of action; cDA = development approach Table 4.1 Characterization of reporting tools 101 BCT Definition (Michie et al., 2013) Intervention Function Link (Michie et al., 2014) TDF Link (Johnston et al., 2020) Additional Rationale 1.1 Goal Setting Set[ting] or agree[ing] upon a goal defined in terms of the behaviour to be achieved Enablement Intentions 1.2 Problem-Solving (including coping planning) Analy[zing] the factors influencing the behaviour and generat[ing] or select[ing] strategies that include overcoming barriers and/or increasing facilitators Enablement BCap BReg Common and successful intervention approach across family support provider literature (McKay et al., 2020) 1.4 Action Planning Prompt[ing] detailed planning of performance of the behaviour (must include one of context, frequency, duration and intensity) Enablement No TDF links 1.5 Review behavioural goal(s) Review behaviour goal(s) jointly with the person and consider modifying goal(s) or behaviour change strategy in light of achievement. This may lead to re-setting the same goal, a small change in that goal or setting a new goal instead of (or in addition to) the first, or no change. Enablement Goals 1.9 Commitment Ask the person to affirm or reaffirm statements indicating commitment to change the behaviour Enablement Incentivization Coercion Intentions* MADP 13.2 Framing/Reframing Suggest[ing] the deliberate adoption of a perspective or new perspective on behaviour (e.g., its purpose) in order to change cognitions or emotions about performing the behaviour Persuasion Enablement Emotions* Relevancy to addressing emotional barriers and thought processes (Locke et al., 2019) 102 BCT Definition (Michie et al., 2013) Intervention Function Link (Michie et al., 2014) TDF Link (Johnston et al., 2020) Additional Rationale 3.1 Social support (emotional) Advis[ing] on, arrang[ing] or provid[ing] social support (e.g., from friends, relatives, colleagues,’ buddies’ or staff) or non-contingent praise or reward for performance of the behavior. It includes encouragement and counselling, but only when it is directed at the behavior (includes ‘Motivational Interviewing’ and ‘Cognitive Behavioural ‘Therapy) Enablement No evidence of any TDF links Social support is indicated as a priority for family support providers of people with SCI (McKay et al., 2020) Table 4.2 Selected BCTs and rationale 103 Figure 4.1 Intervention flow diagram for a tailored BAP (Gutnick et al., 2014; Miller & Rollnick, 2012) and Brief Cognitive Reframing (Locke et al. 2019) intervention 104 Investigating a Co-Designed Brief Action Planning and Brief Reframing Intervention to Promote Leisure Time Activities Among Family Support Providers of People with Spinal Cord Injury: A Feasibility Study 5.1 Overview In 2010, approximately 86,000 people lived with spinal cord injury (SCI) in Canada (Noonan et al., 2012). The number of people living with SCI is expected to reach 121,000 by the year 2030, with 5,800 new cases of SCI occurring each year (Noonan et al., 2012). Many people with SCI may require emotional and practical support to address the functional impairments and secondary conditions associated with SCI and environmental, economic, and social barriers (Smith et al., 2016). This support is typically provided by a family member, partner or close friend (Foster et al., 2005). With the expected increases in SCI prevalence, it is crucial to develop resources to support this population. Extensive research on the outcomes of family members and partners providing support to someone with SCI suggests that family support providers experience higher rates of depression, psychological distress, and caregiver burden than their non-caregiving counterparts (Lynch & Cahalan, 2017; Smith et al., 2016). Caregiver models of stress processes identify engagement in leisure time activities as a key predictor of the morbidity of such outcomes in the broader caregiver population (Pearlin et al., 1990; Pendergrass et al., 2017; Williamson et al., 1998). Importantly, research has demonstrated that family support providers of people with SCI may experience barriers that may limit leisure time activities (Lynch & Cahalan, 2017; McKay et al., 2020). These findings highlight the importance of promoting engagement in leisure time activities among family support providers of people with SCI. However, very few interventions 105 currently exist to promote leisure time activities in this (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016). A team of researchers, executives of community-based organizations, experts in intervention content, intervention delivery, and people with lived experience co-developed an intervention to promote leisure time activity among family support providers of people with SCI. The systematic co-development process adopted an integrated knowledge translation (IKT) approach in which the team equitably partnered throughout the research process (Gainforth et al., 2020; Jull et al., 2017). The research was also guided by the Behaviour Change Wheel (BCW), a theory-based behaviour change framework widely used for intervention development (Michie et al., 2011, 2014). In the first phase of co-development, the team co-constructed and analyzed two data sources (i.e., scoping review (McKay et al., 2020), interview study (Chapter 3)) guided by behaviour change wheel (BCW). The two data sources were then synthesized using the BCW. The synthesis linked identified TDF domains associated with leisure time activities, or mechanisms of action, to promising behaviour change techniques (BCTs), which are the irreducible components of an intervention that act to change behaviour (Michie et al., 2013). The team examined the synthesis findings, which suggested that an intervention should target barriers to leisure time activities using problem-solving, action planning, and reframing BCTs. Based on these findings and the team's expertise, the team co-developed the intervention protocol to promote leisure time activities in family support providers of people with SCI. The team also co-developed the study protocol to examine the feasibility of the study, including the selection of study design, measures, materials, and analysis approach. 106 The resulting intervention integrated Brief Action Planning (BAP) (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) and a Brief Cognitive Reframing intervention (Locke et al., 2019) to apply the promising BCTs. BAP is an evidence-based and person-centered intervention framework grounded in the spirit of motivational interviewing (MI) and aims to enhance the implementation of MI by individuals lacking time and training (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012). BAP includes the recommended techniques of goal setting, action planning and problem-solving (McKay et al., 2020). Additionally, research has verified the feasibility of training peers with SCI in BAP within a four-hour session (Gainforth, Latimer-Cheung, et al., 2015). Cognitive reframing was considered as an intervention approach as it has been shown to reduce stress, anxiety, and depression in caregivers of people with dementia (Vernooij-Dassen et al., 2011). A pilot trial of a Brief Cognitive Reframing intervention by Locke et al. (2019) showed promise in reframing for challenging biased thoughts (i.e., exercise-related cognitive errors) and increasing exercise intentions following a brief 15-minute reframing session. Given the brevity of the intervention and in reframing biased thoughts, this intervention was well-suited to use alongside BAP. This study included three aims to evaluate the feasibility of this intervention. These aims included: (1) Assess the acceptability of the brief intervention for family support providers of people with SCI and assess the preliminary efficacy of the intervention with respect to change in leisure time behaviours. (2) Explore the outcomes of the intervention and their measurement. (3) Identify hypothesized mechanisms of action through which the intervention may have influenced leisure-time behaviours. 107 Leisure-time activities were defined as any activity engaged in out of priority for oneself and one's enjoyment and may be considered self-care. This definition aligns with Steven et al.'s (2004) definition of leisure and the concept of role strain (Pearlin et al., 1990) while addressing the conceptual overlap between leisure, self-care (Petty & Trussell, 2021), and social participation (Levasseur et al., 2010). 5.2 Methods 5.2.1 Design This feasibility study employed a pretest-posttest study design with measurements taken at baseline (T1), two weeks post-intervention (T2), and one-month post-intervention (T3) time points. 5.2.2 Participants Given the exploratory nature of this feasibility study, a sample size calculation was not conducted. A target of 15 participants to be recruited over three months was selected a priori. This decision was made in partnership with the partner community organizations based on the practicality of conducting the study and recruitment through the community organizations. This sample was expected to provide insight into the feasibility of recruiting for a larger-scale trial and identify sample size and representativeness challenges. Participants were recruited based on availability and the study inclusion criteria. Participants were recruited through three community-based organizations (SCI Alberta, SCI British Columbia, and SCI Ontario). To be eligible to participate, participants had to share a close relationship with a person with an SCI, including family members, friends, and/or romantic partners, 2) provide both emotional and practical support to a person with SCI with whom they share a close relationship, and 3) support someone with SCI who had their injury for more than one year. 108 5.2.3 Procedures At baseline (T1), participants were sent an online questionnaire to determine their eligibility and assess baseline measures, including caregiver burden, engagement in basic needs and leisure time behaviours, well-being, and resilience. The intervention consisted of two sessions. A member of the research team contacted eligible participants to schedule the first video-based intervention. The second session was scheduled at the end of the first session. The standard of practice for both sessions can be found in the supplementary materials and published elsewhere (Chapter 4). The intervention was delivered by a Ph.D. student with a behaviour change science background and training in BAP, reframing, and MI. The first session was conducted in three phases. The first phase focused on identifying a participation behaviour (BCT: 1.1 goal setting) and reframing unhelpful thoughts associated with engaging in social participation behaviours (BCT: 13.2 framing/reframing). In the second phase, participants were asked to create a specific, measurable, attainable, realistic, and timely (SMART) behavioural goal (BCTs: 1.1 goal setting and 1.3 action-planning) (Schut & Stam, 1994). In the final phase, participants were asked to think of potential barriers they may face when implementing this plan and possible solutions (BCT: 1.2 problem-solving/coping planning) and provide a commitment statement (BCT: 1.9 commitment). At the end of the session, participants were asked if they would like to set a specific time to check in on their plan. At the beginning of Session 2, participants were asked about their goal progress (BCT: review behaviour goal(s)). The Session 1 format was then followed if they wished to set a new goal. Both intervention sessions were designed to foster the spirit of MI (BCT: 3.1 social support – unspecified) (Miller & Rollnick, 2012) 109 Each intervention session was audio-recorded. During Sessions 1 and 2, participants were asked to rate the importance and their performance of their behavioural goal. Participants were emailed a third online questionnaire at two weeks (T2) and one-month post-intervention (T3). This questionnaire assessed caregiving activities, basic needs and leisure time activities, well-being, resilience, the performance of the goal, steps taken towards the goal, and their acceptability of the intervention. Participants also took part in an audio-recorded telephone-based interview where they were asked to elaborate on their perceptions of the intervention. See Figure 3 for measurements at each time point. Following the interview, participants received remuneration for their participation. 5.2.4 Measures and Materials Demographics questionnaire. Participants were asked to indicate their age, gender, ethnicity, sexuality, population density, relationship to the person they provide support, and injury information of the person to whom they provide support. Participants were also asked about any training or payment they received in providing support to someone with an SCI. Intervention Perceptions Questionnaire. This 12 -item questionnaire was used to assess participants' perceptions of the acceptability, appropriateness, and feasibility of the intervention (Weiner et al., 2017). This scale included three sub-scales with four questions each, including the Acceptability of Intervention Measure (AIM), the Intervention Appropriateness Measure (IAM), and the Feasibility of Intervention Measure (FIM) (Weiner et al., 2017). Each item was ranked on a 5-point scale (1= "completely disagree" to 5 = "completely agree"; Weiner et al., 2017). Steps Taken Towards Leisure Time Goal Questionnaire. This questionnaire assessed if and what steps were taken towards participants' goals set during the sessions. The questionnaire was developed based on the BAP follow-up questions to determine the extent to which the goal 110 was achieved and barriers and facilitators to the goal. Participants were asked 1) to describe the goal that was set during their session; 2) indicate whether they completed, partially completed, or did not complete the goal, or if the goal was ongoing; 3) challenges to achieving the goal; and 4) factors facilitating the goal. Canadian Occupational Performance Measure (COPM). This measure was used to assess the importance and performance of the selected behavioural goal (Carswell et al., 2004; Law et al., 1990; Law et al., 2019). This measure included three questions to evaluate participants' performance and importance of the behaviour on a 10-point Likert scale with higher scores indicating high importance and performance (Law et al., 1990; Law et al., 2019). A change in two points or more was considered significant (Law et al., 2019) Oberst Caregiver Burden Scale (OCBS). This scale assessed caregiver load regarding the difficulty and time required for caregiving tasks (Oberst, 1990). Tasks included providing personal care and medical care, assisting with activities of daily living, monitoring symptoms, managing emotions and behaviours, dealing with finances, and coordinating and seeking health services. The difficulty of caregiving task measure was rated on a 5-point Likert scale from 1 ('not difficult') to 5 ('extremely difficult'). Time spent on caregiving tasks was rated on a 5-point Likert scale from 1 ('none') to 5 ('a great amount of time'). A total score is used and is the sum of 15 items. Higher scores indicate great task difficulty and more time spent on each task (Oberst, 1990). The value for the Cronbach’s Alpha for the scale was α = 0.95 at T1, α = 0.73 at T2, and α = 0.88 at T3. Caregiver Well-Being SF (CWBS-SF). This 16-item scale was used to assess the extent to which caregivers' needs (CWBS-SF Needs) and activities of daily living (CWBS-SF Activities) and were met over the prior three months at baseline (T1), and prior two weeks at T2, 111 prior one month at T3. Each item was rated on a scale of 1 ('rarely') to 5 ('usually'). Under basic needs, topics included physical needs (3 questions), emotion (three questions), and self-security (two questions). Activities of daily living included self-care (four questions), connections (two questions), and time for self (two questions). Cronbach’s Alpha for the scale was α = 0.66 at T1, α = 0.72 at T2, and α = 0.30 at T3. Medical Outcomes Survey – Short-Form 36 (MOS-SF36). The Mental-Health and Vitality subscales of the MOS-SF36 were used to assess well-being (Stewart et al., 1988; Ware, 1993). The Mental Health sub-scale included five questions about participants’ emotional well-being over the last four weeks at baseline (T1), two weeks at T2, and one month at T3 (e.g., “Have you been a nervous person?”, “Have you felt calm and peaceful?”, “Have you felt downhearted and blue?”). These questions were rated on a scale from 1 ('All of the time ') to 6 ('None of the time'). The Vitality sub-scale included four questions rated on the same scale. These questions further explored differences in participants’ emotional well-being, including questions regarding energy level and fatigue over the last four weeks at baseline (T1), two weeks at T2, and one month at T3 (e.g., “Did you feel full of pep?”, “Did you feel tired?”) (Stewart et al., 1988; Ware, 1993). Cronbach’s Alpha for the Mental Health sub-scale was α = 0.79 at T1, α = 0.80 at T2, and α = 0.85 at T3. Cronbach’s Alpha for the Vitality sub-scale was α = 0.86 at T1, α = 0.85 at T2, and α = 0.83 at T3. Connor–Davison Resilience Scale (CD-RISC 10). This scale was used to measure resilience (Campbell-Sills & Stein, 2007). This scale consists of ten questions exploring participants’ ability to tolerate experiences including, but not limited to, change, pressure, failure, or personal issues over the last four weeks at baseline (T1), two weeks at T2, and one month at T3. Each item was rated on a five-point Likert scale from 0 ('never') to 4 ('almost 112 always'). Scores were totalled to a maximum score of 40. Higher scores suggested higher levels of resilience. The value for Cronbach’s Alpha for the scale was α = 0.91 at T1, α = 0.90 at T2, and α = 0.93 at T3. Intervention Perceptions Interview Guide. Interview questions explored participants' perceptions of the intervention. In the first part of the interview, participants were asked to describe the benefits of the intervention, drawbacks, or unanticipated consequences. Participants were also asked how they thought the intervention could be changed. 5.2.5 Analysis Data analyses associated with each study aim are presented below. Aligned with calls for improved reporting on the fidelity of behaviour change interventions (Toomey et al., 2020), intervention fidelity was examined prior to examining study aims. 5.2.5.1 Intervention Delivery A priori benchmarks were not set for fidelity due to the exploratory aims of this study. To compare the planned and actual delivery of the intervention, two coders first independently coded the intervention manual for BCTs using the BCT Taxonomy 1 (BCTTv1) (Michie et al., 2013). Two coders then independently coded each intervention transcript for the presence or absence of each intervention and/or associated BCTs using a summary table of the coded intervention manual. Inter-rater reliability was calculated after each transcript, and coding discrepancies were resolved. Fidelity to intervention strategies was determined by the percentage of intervention strategies and BCTs present in each transcript. A modified version of the Motivational Interviewing Skill Code (MISC) (Miller et al., 2003) was used to assess intervention fidelity to the spirit of MI and asses additional relational techniques used beyond what was included in the intervention manual. First, two coders 113 independently coded the intervention manual for counsellor strategies using the modified MISC. Interrater reliability was calculated and discrepancies were resolved. Once coding was finalized, counsellor behaviour counts were totalled. A single coder applied global rating scores outlined by the MISC for the spirit of MI (i.e., Partnership, Autonomy, Collaboration, Evocation), Empathy, and Acceptance on a 7-point Likert scale from high (7) to low (1) adherence. Average global scores and standard deviations were calculated to assess the integrity of the MI intervention (Miller et al., 2003). Summary scores calculated included the ratio of questions to reflections and percent MI-consistent responses (Miller et al., 2003). A question to reflection ratio of 2:1 or greater was considered good. As there is no standardized measure of percent MI-consistent response, high percentages indicated greater MI adherence. 5.2.5.2 Aim 1: Acceptability and Usefulness of the Intervention The acceptability of the intervention at the T3 time point and steps taken towards a leisure goal were summarized. Audio-recorded interviews at the T3 time point were transcribed verbatim. A content analysis was conducted across all transcripts to describe participants' perceptions of the intervention (Hsieh & Shannon, 2005). 5.2.5.3 Aim 2: Explore Intervention Outcomes Internal consistency for the OCBS, CWBS-SF, MOS-SF36 sub-scales and CD RISC 10 was demonstrated by calculating Cronbach's alpha at T1, T2, and T3 time points. The magnitude of mean difference at T1 and T2 and T1 and T3 for OCBS, CWBS-SF, MOS-SF36 (mental health and vitality) and CD RISC 10 was examined using Hedge's g with associated 95% confidence intervals (CI) for mean difference and Hedge's g. The same analysis procedure was used to examine the magnitude of difference in change for the COPM satisfaction and ability scales between Session 1 and Session 2, Session 2 and T2, and T2 and T3 for COPM satisfaction and 114 ability scales. CIs were interpreted by assessing if the CI crossed zero, which indicated a less than 95% chance the true population mean difference was equal to zero. The effect sizes were categorized as small (< 0.20), medium (0.20-0.50), large (0.50-0.80), or very large (> 0.80; Cohen, 1988). The p-values of these analyses were not reported to reduce the risk of over-interpretation of the results due to the small sample size. Hedge's g was reported for effect size rather than Cohen's d to account for biased effects based on sample size (Cumming, 2013). A Pearson’s correlation coefficient was computed to assess the linear relationship between satisfaction with leisure time behaviour and outcomes measures with CIs that did not cross zero at T1, T2, or T3. 5.2.5.4 Aim 3: Identify Hypothesized Mechanisms of Action A content analysis (Hsieh & Shannon, 2005) was conducted across all session transcripts to identify common behavioural goals. Two coders (RM, AS) then independently extracted barriers and facilitators to behaviours described by participants during sessions. Consistent with methods used by Weatherson et al. (2017), barriers and facilitators were operationalized as any factor, view, characteristic or belief that impedes or promotes a behaviour. Interrater reliability between coders was calculated using percentage agreement, Kappa statistic and the Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) (Landis & Koch, 1977). PABAK adjusts for the high prevalence of negative agreement (i.e., when both coders agree that codes are not present) and bias presented in the 'real-world' (Landis & Koch, 1977). Inter-rater reliability values of 0.60-0.79 indicated substantial reliability, and values above 0.80 were considered outstanding for both Kappa and PABAK statistics (Landis & Koch, 1977). Discrepancies between coders were resolved through discussion, and coders consulted an outside coder (HG) when agreement could not be reached. Inter-rater reliability and resolution of coding discrepancies were assessed using 115 identical methods for each phase of the coding analyses. To achieve inter-rater reliability of barrier and facilitator extraction, both coders extracted barriers and facilitators across 33% of the recordings (n = 6) or until acceptable inter-rater reliability was achieved (κ = 0.60). The remainder of the transcripts were assessed by a single coder. To understand the theoretical mechanisms associated with selected behaviours, two coders independently coded all barriers and facilitators mentioned during the intervention sessions and T2 and T3 surveys using the Theoretical Domains Framework (TDF) (Cane et al., 2012). Interrater reliability was calculated after each transcript and discrepancies were resolved through conversation. TDF coded barriers and facilitators were then linked to common behavioural goals. The number and proportion of each TDF domain were calculated for all behaviours. Links between prominent TDF domains and associated BCTs were identified using the Theory and Techniques Tool (see: https://theoryandtechniquetool.humanbehaviourchange.org/) to verify if applied BCTs targeted barriers experienced by participants. 5.3 Results 5.3.1 Participant Demographics Participant demographics can be found in Table 5.1. A total of 10 family support providers participated in the study out of the target of 15. Fourteen family support providers indicated interest in participating. Two prospective participants felt that it was not the right time to set a new leisure time goal and one was not available for scheduling. One participant completed Session 1 but did not complete Session 2 due to changes in schedule and life circumstances. Participants in the study (n = 10) were women with an average age of 53 (SD = 16). Participants were either a spouse (n = 7), partner (n = 1), mother (n = 1), or daughter (n = 116 1) of someone with an SCI. All participants were white, and participants’ sexual orientation included straight (n = 8), lesbian (n = 1), and bi-sexual (n = 1). Each participant took part in two sessions. Session 1 was on average 33 minutes (SD = 11) in duration ranging from 19 to 56 minutes. Session 2 was on average 29 minutes (SD = 13) in duration ranging from 10 to 58 minutes. Two participants did not respond to the two-week survey. 5.3.2 Intervention Delivery Average interrater reliability for BCT coding was substantial to excellent (% agreement = 74.19 (SD = 26.48), κ = 0.85 (SD = 0.21), PABAK = 0.92 (SD = 0.23). An average of 93.33% (SD = 16.58%) of planned BCTs applied across all transcripts. Of note, two participants did not wish to set a new goal in Session 2 so no additional BCTs were applied. Average inter-rater reliability for coding using the MISC was outstanding (% agreement = 80.91% (SD = 9.75%), κ = 0.87 (SD = 0.07), PABAK = 0.96 (SD = 0.02). The average scores for each domain of MI integrity were 6.45 (out of 7; SD = 0.60) for Acceptance, 6.20 (out of 7; SD = 0.77) for Empathy, and 6.35 (out of 7; SD = 0.59) for MI Spirit, indicating high adherence. The total question to reflection ratio was 1.94:1 indicating less than fair MI adherence (Miller et al., 2003). The average proportion of MI-consistent responses across sessions was 99.8% (SD = 0.01%). 5.3.3 Aim 1: Acceptability and Usefulness of the Intervention 5.3.3.1 Behaviour Change At two weeks, four participants indicated they fully completed their selected behavioural goal, one indicated they partially completed their goal, three indicated their goal was ongoing, and one did not complete their goal. At one month, one participant indicated they fully completed their selected behavioural goal; three indicated they partially completed their goal, three indicated their goal was ongoing, and two did not complete their goal. Selected categories 117 of selected behaviour goals for Sessions 1 and 2 can be found in Table 5.2. The selected behaviours included both leisure time and self-care behaviours. Two participants selected the same behavioural goal in Session 2, and eight participants set new goals or adjusted the same goal. 5.3.3.2 Participant Feedback Participants’ rating of acceptability was M = 4.30 (out of 5; SD = 0.66, min = 3, max = 5). Participants’ rating for appropriateness was M = 4.12 (out of 5; SD = 0.710, min = 3, max = 5). Participants’ rating for feasibility was M = 4.15 (out of 5; SD = 0.70, min = 3, max = 5). Qualitative interviews with participants following the intervention supported these findings. Several key themes were identified describing participants’ perceptions of the intervention including commitment, impact of reframing, social support, and the COVID 19 pandemic. Commitment Participants (n = 9) described the implied commitment associated with the intervention as beneficial. Participants suggested that making a commitment out loud by setting a goal and creating a plan using BAP was a critical first step to starting their behaviour change goal as described by one participant: Like to verbalize or commit to something because it was something- like it wasn't necessarily like an "aha" moment, but it was just more like making it a priority and then putting some type of measurement against it, to make sure I was. was doing it, or it was a priority it continued to be a priority. (Spouse, Exercise) The sense of accountability to the intervention and interventionist was considered important, including the checking in during sessions, surveys, and interviews, as stated by this participant: 118 Having a commitment to you has helped me put a commitment to myself on my goals. (Spouse, Exercise) Impact of Reframing Participants (n = 7) discussed reframing techniques as a useful and transferable strategy to cope with emotions, attitudes, and biased thoughts towards their participation goals as described by this participant: I asked myself that question like "am I exaggerating any part of this?", and I was like I'm exaggerating how tired, it will be or how tired it will make me. I'm not thinking about how much I enjoy having home-cooked food after so those two questions that really helped a lot. (Daughter, Healthy Eating and Exercise) The reframing technique was discussed as useful in reframing feelings of guilt associated for three participants with their behavioural goals as well as fostering self-compassion when the goal was not achieved as experienced by this participant: And I think it's one of those phrases that you and I worked on in the intervention that helped me, like you know what it is good guilt? But it's yeah, keeping the right balance of making myself be kind to myself and not putting extra stress or panic or being beating myself up for not always achieving my weekly goal but I'm just being proud of myself that I've got the goal of that I'm continuing to work on it. (Spouse, Exercise and Socializing) Indeed, some participants felt greater emphasis should be placed on self-compassion to cope with situations where goals are not met. For example, the following participant felt comparing their ability to engage in the behaviour and their performance reduced their self-kindness: But it does make you feel badly that you're not doing it, I think, of course, it's doable Of course it is and yeah so I guess the, the purpose of it is to make you think about maybe in a positive way, but it can be perceived in a negative way but come on loser, you said it was doable why didn't you do it. (Parent, Healthy Eating) 119 Social Support Participants (n = 4) described feeling a sense of connectedness and acceptance through the conversation style and a personality match between the interventionist (RM) and themselves. The following participant described these feelings as a facilitator to participating in the intervention: I appreciated your energy and kindness you just made it really easy to talk and really easy to open up and talk about how it's going (Spouse, Exercise and Socializing) Participants (n = 3) also appreciated the person-to-person format of the intervention and recommended any future iterations adopt this format. The following participant felt hesitant about the virtual delivery but was surprised by their ability to connect: Although I find I was kind of surprised that how personal I could be on zoom but, obviously, if you can do one face to face will be nice (Partner, Communication) Some participants (n = 4) felt that delivery of the intervention by peer mentors or individuals who shared similar lived experiences would enhance the supportive nature of the intervention as recommended by the following participant: Just because then the encouragement and support mean that much more and it's easier to when you have seen somebody else either go through it or going through it, who and is finding it useful or helpful, but it just I feel like it will have more impact or more success. (Spouse, Exercise and Socializing) COVID-19 Participants (n = 3) discussed challenges associated with participating in their goal associated with the COVID 19 pandemic. These challenges were described in relation to loss of 120 external (e.g., friends, family, health care), restriction in activities due to health mandates, overall feelings of stress, and a sense of isolation as experienced by this participant: Yeah, but to start anything to focus on taking care of yourself, for the time when nothing there's no boundaries for anything you're stuck at home there's not much to do, it's a really challenging thing to take on with no human interaction. (Spouse, Exercise) 5.3.4 Aim 2: Explore Intervention Outcomes Tables 5.3 and 5.4 includes all descriptive data. Figures 5.1 - 5.3 depict all individual-level outcome data. OCBS. CIs for sub-scales of the OCBS, including time and difficulty, crossed zero. At T2, six participants decreased, and one participant increased their time spent providing support. At T3, three participants decreased their time, two participants did not change their time, and four participants increased their time spent providing support. At T2, ratings of difficulty providing support decreased in three participants, did not change in two participants, and increased in three participants. At T3, the difficulty of providing support decreased in six and increased in four participants. CWBS. CIs at all timepoints crossed zero. At T2, three participants increased, one participant did not change, and three participants decreased their engagement in activities of daily living. At T3, three participants increased, and six decreased their engagement in activities of daily living. At T2, four participants increased, one participant engaged in the same, and two participants decreased their engagement in behaviours meeting their basic needs. At T3, four participants increased, two participants engaged in the same, and four participants decreased behaviours meeting their basic needs. MOS-SF36. A large effect-sized increase in emotional well-being measured using the mental health subscale was found between T1 M = 50.86 (out of 100; SD = 15.61) and T2 M = 121 64.57 (SD = 18.10) [(g = -1.11, 95% CI (-2.02, -0.16)] and T1 M = 53.20 (SD = 13.47) to T3 M = 61.60 (SD = 10.19) [(g = 0-.94, 95% CI (-1.66, -0.19)]. At T2, six participants increased their mental health score, and one decreased score. At T3, seven participants increased their mental health, two participants did not change, and one person decreased their score. Confidence intervals for vitality scores of MOS-SF36 crossed zero. At T2, five participants increased their vitality scores, and two participants decreased their vitality scores. At T3, eight participants increased their vitality scores, and two participants decreased their vitality scores. CD-RISC 10. CIs for resilience crossed zero at all time points. At T2, three participants increased their resilience, one participant saw no change in resilience, and four participants decreased their resilience. At T3, six participants increased their resilience, and four participants decreased their resilience. Behaviour Performance. A large-effect sized change was seen in participants rating of their satisfaction with their performance of their selected behavioural goal from Session 1 M = 4.67 (out of 10; SD = 1.66) to Session 2 M = 8.33 (SD = 1.66) [(g = -1.65, 95% CI (-2.63, -0.62)]. CIs crossed zero when comparing means sores of participants' satisfaction between Session 2 and T2 or Session 2 and T3. Between Session 1 and 2, eight participants increased their satisfaction rater and seven by greater than two points. Two participants did not change. At T2, six participants increased their satisfaction rating and all by greater than two and one participant did not change. At T3, two participants increased their satisfaction by greater than two; four decreased, and four did not change. A very large effect-sized change was observed in participants’ perceived ability to perform their selected behavioural goal from Session 1 M = 6.56 (out of 10; SD = 1.33) to Session 2 M = 8.33 (SD = 1.12) [(g = -0.925, 95% CI (-1.62, -0.11)]. CIs crossed zero when 122 comparing means scores of ability between Session 2 and T2 and Session 2 and T3. Seven participants increased their perceived ability between Session 1 and Session 2 and six by greater than two points. One participant decreased their rating, and two did not change. At T2, one participant increased their perceived ability rating by greater than two; two decreased, and five rated their ability as the same. At T3, two participants increased their ability rating and one by greater than two. Two participants decreased their rating, and five did not change. Satisfaction and Mental Health. There was a moderate positive correlation between satisfaction and mental health at T2 [r(7) = 0.69, p = 0.41, 95% CI (0.41, 0.93)]. No correlation was found at T1 [r(7) = -0.22, p = 0.95, 95% CI (-0.68, 0.65)] or T3 [r(8) = 0.16, p = 0.65, 95% CI (-0.52, 0.72)]. 5.3.5 Aim 3: Identify Hypothesized Mechanisms of Action Average interrater reliability for barrier and facilitator extraction across six session transcripts was outstanding [% agreement = 91.9% (SD = 6.2), κ = 0.80 (SD = 0.20)]. Average inter-rater reliability for barrier and facilitator coding using the TDF across 20 session transcripts and survey data was substantial to outstanding [% agreement = 59.9% (SD =15.78%), κ = 0.72 (SD = 0.03), PABAK = 0.93 (SD = 0.13)]. A total of 272 barrier and facilitator codes were extracted and coded. A total of 169 codes were extracted for exercise, 53 for socializing, 50 for healthy eating, and 12 for time alone. As only one participant chose a behaviour associated only with time alone during one session, TDF codes for this behaviour were not included for analysis. The most frequently coded TDF domains for exercise behaviours included environmental context and resources (ECR) (n = 53, 31.36%), beliefs about consequences (BCon) (n = 21, 12.43%), and social influences (SI) (n = 20, 11.83%). The most frequently coded TDF domains for socializing were ECR (n = 16, 30.19%), intentions (n = 10, 18.87%), and SI (n = 9, 16.98%). 123 The most frequently coded domains for healthy eating were emotions (n = 16, 32.00%), behavioural regulation (n = 8, 16.00%) and reinforcement (n = 6, 12.00%). Table 5.5 includes the frequencies and proportions for all TDF codes by behaviour. The most frequently coded domains across all behaviour categories included environmental context and resources, beliefs about consequences, intentions, emotions and social influences. All TDF domains, with the exception of BCon, were targeted by linked or inconclusively linked BCTs applied in this intervention. 5.4 Discussion This study examined a tailored BAP and reframing intervention co-developed to understand if the intervention was acceptable and potentially valuable for promoting leisure-time behaviours among family support providers of people with SCI. This study also explored the potential outcomes of the intervention and hypothesized mechanisms of behaviour change. Findings and considerations for future interventions specific to each of the study aims are discussed below. 5.4.1 Aim 1 Findings: Acceptability and Usefulness of the Intervention The findings suggest the intervention was acceptable and elicited changes in behaviour in various leisure time goals involving exercising, socializing, spending time alone, and healthy eating. The BCTs delivered in this intervention through BAP may have fostered a sense of accountability to leisure time goals and enabled participants to prioritize these activities. Despite the wealth of evidence highlighting the negative impact of restricted leisure time activity (Omiya et al., 2021; Pearlin et al., 1990; Pendergrass et al., 2017), these behaviours are often not prioritized by family support providers (Vara-García et al., 2020). Developing a goal, creating a plan, and making public commitment statements show promise in increasing intentions and 124 performance of behaviours such as exercise, dietary change, and clinical adherence (Coupe et al., 2019; Kelly, 2011; Oussedik et al., 2017). Indeed, some participants developed commitment strategies independent of the intervention, such as telling family and friends. Future research should further investigate the impact of these BCTs in future interventions. Placing greater emphasis on the BCTs of goal setting and problem-solving may also be valuable in future iterations of this intervention. Survey data revealed that participants experienced barriers to their leisure time goals, including setting unrealistic or unsustainable goals or changing life circumstances such as work or caregiving load. These barriers emphasize the importance of continued work to set achievable goals (Avishai et al., 2019). Additionally, prompting the development of multiple plans to address a wide range of potential barriers or the repetition of problem-solving may be helpful to reinforce developed coping plans (Dyck et al., 2021; Elliott & Berry, 2009; Hagger & Luszczynska, 2014). Additional sessions may be necessary to foster skills in these BCTs to support the development of realistic goals with clear and manageable coping plans. Our findings also underscore the potential of incorporating reframing to address biased and unhelpful thoughts. The reframing strategy was considered helpful to reframing cognitive errors such as being tired or lack of time in support of findings by Locke et al. (2019). Participants also suggested that reframing was particularly useful for reframing thoughts of guilt and anxiety associated with engaging in self-care and leisure time activity, contributing to a lack of self-compassion. Feelings of guilt and anxiety associated with leisure time and self-care activities are frequently cited as barriers to these behaviours (e.g., (Angel & Buus, 2011; Boschen, Tonack, et al., 2005; Dickson et al., 2010)). These feelings of guilt and anxiety may be associated with a high attentional bias towards negative emotional information (Cabrera et al., 125 2021). Together, these results suggest that reframing may be a valuable technique to draw family support providers’ attention to biased or unhelpful thoughts associated with leisure time activities and actively develop a more balanced response. Participants' value placed on social support suggests that person-to-person delivery may be a desirable mode of delivery for future interventions. This feedback may also relate to the adoption of the spirit of MI in this intervention. Research indicates that practitioners’ use of techniques congruent with the spirit of MI is associated with improvements in collaboration between practitioners and clients and is found to foster clients’ send of autonomy (Gaume et al., 2010; Miller & Rollnick, 2012). Importantly, MI is suggested to encourage social support in caregiving populations (Mourão et al., 2017), which has been associated with lower levels of depression, improved resilience, and increased participation in leisure time activities (Elliott et al., 2014; Pearlin et al., 1990; Sibalija et al., 2018). Despite this promising evidence, the role of MI in caregiver interventions has been scarcely investigated. Thus, future research should further investigate the potential of MI and social support in interventions to promote engagement in leisure time activities. 5.4.2 Aim 2 Findings: Explore Intervention Outcomes and their Measurement Improvements were found in emotional well-being and satisfaction to perform the behaviour. The preliminary finding of improvement in satisfaction to perform the behaviour indicate the intervention may have initiated the behaviour change process within the first week of the intervention. Additionally, satisfaction with performing the behaviour was positively correlated with emotional well-being. Though this finding should be interpreted with caution due to small sample size, these results align with research that suggests that higher satisfaction with leisure time activities is associated with lower rates of depression and anxiety in family support 126 providers (Omiya et al., 2021; Schüz et al., 2015; Sibalija et al., 2018). Further research is needed to explore the relationship between satisfaction with leisure time activity and emotional well-being and the impact of this intervention. The results of this study suggest resilience may be an outcome of interest to explore in future interventions. Mean participant scores of resilience were located in the lowest quartile (i.e., 1 – 25%) of population means at all time points, which may indicate difficulties in coping with stress and adversity (Campbell-Sills et al., 2009). Resilience is suggested to influence support providers’ ability to overcome barriers related to the context of caregiving, including barriers to leisure time and self-care, and may contribute to poor mental health (Elliott et al., 2014; Simpson & Jones, 2012). The observed CI for resilience in this study crossed but was near zero suggesting there is some possibility the intervention could elicit significant changes in resilience. Future research should further examine the role of resilience in leisure time activities and the impact of this intervention. The CWBS may not be an appropriate scale to use in future interventions. The purpose of this scale was to evaluate participants’ overall participation in self-care and leisure time activities (i.e., basic needs and activities of daily living). However, global scores may not be useful in measuring leisure time behaviours in personalized interventions targeting one behaviour. Further, poor internal consistency was observed for this scale. The preliminary and promising application of the COPM to assess satisfaction coupled with the body of work defining meaningful participation in the domain of disability (e.g., (Dijkers, 2010; Martin Ginis et al., 2017; Noreau et al., 2005)) suggests measuring quality of leisure time activity rather than or in addition to quantity may be useful in future research. 127 5.4.3 Aim 3 Findings: Identify Hypothesized Pathways of Behaviour Change Findings indicate that behaviour change may relate to the TDF domains of environmental context and resources, beliefs about consequences, emotions, and social influences. These TDF domains were aligned with those identified in the literature contributing to the intervention's co-development and were used to select BCTs in this intervention (McKay et al., 2020). This finding indicates that applied BCTs likely targeted the intended mechanisms of action. However, the domain beliefs about consequences was not targeted. Future interventions should investigate the role of these mechanisms of action in the intervention and how the included BCTs uniquely address them. Future research should also examine the efficacy of including additional BCTs linked to these mechanisms of action using tools such as the Theory and Techniques Tool (see https://theoryandtechniquetool.humanbehaviourchange.org/). 5.4.4 Future research While a small sample size limited this study, the findings highlight considerations for future feasibility and pilot studies evaluating this intervention. Future studies should evaluate the necessary dose and duration of the intervention, examine the impact of delivery by alternative interventionists (e.g., peers), determine and improve the feasibility of recruitment, and establish markers of effectiveness. Other avenues of interest may include exploring the intensity of applied BCTs and further examining the role of reframing in the intervention. 5.4.5 Strengths and Limitations There were several strengths to this research. The systematic and theory-driven approach to co-development using the BCW guided the selection of relevant and evidence-based intervention strategies by synthesizing multiple data sources. Notably, the Medical Research Council highly recommends using behaviour change theory to develop interventions as 128 interventions based on theory may be more effective than those that are not (Craig & Petticrew, 2013; Glanz & Bishop, 2010; Painter et al., 2008). Using an IKT co-development approach facilitated an equitable partnership with relevant experts and decision-makers in community organizations who support family support providers of people with SCI. This partnership may enhance the relevance of this research and support the translation of the findings. Examining the feasibility of this intervention using a one-group pretest-posttest design required minimal research resources. This exploratory design allowed for the thorough investigation of multiple factors that may have influenced the intervention. The findings will support future studies that may optimize the intervention and study protocol to examine the efficacy of the intervention. Despite these strengths, several limitations may impact the interpretation of this study’s findings. While small sample sizes are recommended for feasibility studies (Beets et al., 2021), this study was not powered to detect significant changes in outcomes. Additionally, several outcome measures had poor internal consistency, including the CWBS-SF. Representativeness of the sample is also a limitation as participants in this study were women, white, and primarily provided support to partners with an SCI. Though little is known about the composition of the family support providers in the SCI context, these demographics likely do not reflect the diversity of family support providers of people with SCI. The COVID-19 pandemic also posed significant barriers as the pandemic restricted participants' leisure activities beyond what would be typically experienced under normal circumstances (Beach et al., 2021). The pandemic may have also resulted in additional undue stress, which may have influenced the findings of this study (Beach et al., 2021). 129 5.5 Conclusion This study demonstrates the acceptability and preliminary usefulness of a co-developed and theory-based brief action planning and reframing intervention promoting leisure time activity in family support providers of people with SCI. Interviews with participants indicated that participants found the intervention helpful to prioritize leisure time activities and cope with unhelpful and biased thoughts associated with guilt and anxiety. Quantitative findings suggest the intervention shows promise in improving participants' mental well-being and warrants further investigation. This research provides clear recommendations to refine the intervention protocol in future feasibility and pilot studies. 130 Participants, (n) 10 Age (years), Mean (SD) 53 (16) Gender, (n) Women (n) 10 Sexuality (n) Straight 8 Lesbian 1 Bisexual 1 Ethnicity (n) White 10 Province (n) British Columbia 2 Ontario 8 Urban/Rural (n) Urban (pop >50,000) 4 Rural (pop <50,000) 6 Have SCI (n) Yes 0 No 10 Relationship to Person with SCI (n) Partner 1 Spouse 7 Child 1 Parent 1 Timing of Relationship (n) Pre-Injury 7 Post-Post Injury 3 131 Payment for Providing Support (n) Yes 0 No 10 Training in Support Providing (n) Yes 1 No 9 Years Providing Support, Mean (SD) 10 (11) SCI Demographics of Person Receiving Support Years post-injury, Mean (SD) 14 (16) Gender (n) Women 1 Man 9 Injury Type (n) Tetraplegia 2 Complete 7 Do not know 1 Injury Completeness (n) Complete 5 Incomplete 4 Do not know 1 Mode of Mobility (n) Manual Wheelchair 5 Power Wheelchair 2 Cane 2 Walk Independently 1 Cause (n) Fall 2 Leisure Accident 3 Traffic Accident (Car or Pedestrian) 2 Illness/Congenital 3 Table 5.1 Participant demographics 132 Table 5.2 Selected behaviour goals Behaviour Goal Category Session 1, (n) Session 2, (n) Exercise 5 6 Socializing 2 3 Time to Self 1 0 Healthy Eating 2 1 133 Outcome Measure Baseline (n = 8) 2 weeks (n = 8) Baseline (n = 10) 1 month (n = 10) OCBS Difficulty, mean (SD) 2.40 (1.05) 2.26 (0.78) 2.38 (0.959) 2.13 (0.542) M Diff = 0.14 (0.46), 95% CI (-0.25, 0.55) g = 0.49, 95% CI (-0.40, 0.94) M Diff = 0.25 (0.83), 95% CI (-0.34, 0.84) g = 0.29, 95% CI (-0.33, 0.89) OCBS Time, mean (SD) 3.32 (0.65) 3.02 (0.69) 3.23 (1.08) 2.99 (0.661) M Diff = 0.32 (0.65), 95% CI (-0.22, 0.87) g = 0.91, 95% CI (-0.07, 1.28) M Diff = 0.24 (0.70), 95% CI (-0.26, 0.74) g = 0.32, 95% CI (-0.29, 0.93) CWBS Basic Needs, mean (SD) 4.48 (0.63) 4.46 (0.52) 4.52 (0.56) 4.50 (0.60) M Diff = 0.02 (0.54), 95% CI (-0.41, 0.47) g = 0.57, 95% CI (-0.62, 0.69) M Diff = 0.02 (0.69), 95% CI (-0.16, 0.67) g = 0.02, 95% CI (-0.57, 0.62) CWBS Activities of Daily Living, mean (SD) 3.11 (0.72) 3.10 (0.26) 3.36 (0.85) 3.11 (0.72) M Diff = 0.01 (0.54), 95% CI (-0.45, 0.46) g = 0.01, 95% CI (-0.64, 0.67) M Diff = 0.26 (0.58), 95% CI (-0.16, 0.67) g = 0.42, 95% CI (-0.21, 1.04) MOS SF-36 (Mental Health), mean (SD) 50.86 (15.61) 64.57 (18.10) 53.20 (13.47) 61.60 (10.19) M Diff = 13.72 (11.51), 95% CI (-24.36, -3.07) g = -1.11, 95% CI (-2.02, -0.16) M Diff = 8.40 (8.53), 95% CI (-14.50, -2.30) g = -0.94, 95% CI (-1.66, -0.19) MOS SF-36 (Vitality), mean (SD) 41.14 (17.99) 49.71 (13.24) 43.20 (15.52) 48.00 (8.64) M Diff = 8.57 (12.09), 95% CI (-19.76, 2.61) g = -0.66, 95% CI (-1.43, 0.14) M Diff = 4.8 (11.75), 95% CI (-13.20, 3.60) g = -0.39, 95% CI (-1.0, 0.24) CD RISC 10, mean (SD) 23.00 (5.61) 23.37 (5.78) 23.9 (5.3) 25.8 (6.20) M Diff = 0.37 (2.00), 95% CI (-2.04, 1.29) g = -0.18, 95% CI (-0.83, 0.49) M Diff = 1.90 (3.54)95, % CI (-4.43, 0.63) g = -0.51, 95% CI (-1.14, 0.14) Table 5.3 Participant outcomes 134 Table 5.4 COPM scores Session 1 Session 2 Session 2 2 weeks Session 2 1 month COPM (Satisfaction), mean (SD) 4.67 (1.67) 8.33 (1.67) 6.12 (1.25) 8.13 (3.00) 5.80 (1.48) 5.80 (3.71) M Diff = 3.67, 95% CI (-5.30, -2.04) g = 1.65, 95% CI (-2.63, -0.62) M Diff = 2.00, 95% CI (-4.90, 0.90) g = -0.55, 95% CI (-1.24, 0.18) M Diff = 0, 95% CI (-2.96, 2.96) g = 0, 95% CI (-0.59, 0.59) COPM (Ability), mean (SD) 6.55 (1.33) 8.33 (1.12) 9.125 (0.991) 8.38 (2.33) 8.5 (1.65) 6.6 (2.99) M Diff = 1.78, 95% CI (-3.22, -0.30) g = 2.02, 95% CI (-1.62, -0.11) M Diff = 0.75, 95% CI (-0.85, 2.35) g = 0.37, 95% CI (-0.32, 1.04) M Diff = 1.90, 95% CI (-0.40, 4.20) g = 0.57, 95% CI (-0.09, 1.20) 135 Table 5.5 Frequency and proportion of TDF domains by behaviour Note. ECR = environmental context and resources; BCon = beliefs about consequences; SI = social influences; Int = intentions; BReg = behavioural regulation; Emo = emotions; MADP = memory, attention, and decision making process; Rein = reinforcement; BCap = beliefs about capabilities, SPRI = social/professional role or identidy; Opt = optimism; Know = knowledge. TDF Domain Exercise, (n = 169) n (%) TDF Domain Socialize, (n = 53) n (%) TDF Domain, Eating, (n = 50) n (%) ECR 53 (31.36%) ECR 16 (30.19%) Emo 16 (32%) BCon 21 (12.43%) Int 10 (18.87%) BReg 8 (16%) SI 20 (11.83%) SI 9 (16.98%) Rein 6 (12%) Int 15 (8.88%) BCon 6 (11.32%) ECR 5 (10%) BReg 14 (8.28%) Emo 6 (11.32%) SI 4 (8%) Emo 12 (7.10%) BReg 3 (5.66%) Int 4 (8%) Goals 10 (5.92%) BCap 2 (3.77%) BCon 3 (6%) MADP 8 (4.73%) MADP 1 (1.89%) Goals 3 (6%) Rein 6 (3.55%) Opt 0 (0%) MADP 1 (2%) BCap 5 (2.96%) Know 0 (0%) Bcap 0 (0%) SPRI 5 (2.96%) Skills 0 (0%) Opt 0 (0%) Opt 0(0) SPRI 0 (0%) Know 0 (0%) Know 0(0) Rein 0 (0%) Skills 0 (0%) Skills 0(0) Goals 0 (0%) SPRI 0 (0%) 136 Session 1 Session 20246810TimeAbility RatingP1P2P3P4P5P6P7P8P9P10T1 T2 T30246810TimeAbility RatingP1P2P3P4P5P6P7P8P9P10Session 1 Session 20246810TimeSatisfaction RatingP1P2P3P4P5P6P7P8P9P10T1 T2 T30246810TimeSatisfaction RatingP1P2P3P4P5P6P7P8P9P10 Figure 5.1 Individual Ability and Satisfaction ratings measured using the COPM. (a) Ability ratings at Session 1 and 2 (b) Ability ratings at T1, T2, and T3. (c) Satisfaction ratings at Session 1 and 2. (d) Satisfaction rating at T1. T2, and T3. Increasing scores indicate improvement in Ability and Satisfaction. An increase by two or greater is considered significant.a b c d 137 T1 T2 T33.03.54.04.55.05.56.0TimeMean Basic Needs Score (CWBS)P1P2P3P4P5P6P7P8P9P10T1 T2 T3012345TimeMean ADLs Score (CWBS)P1P2P3P4P5P6P7P8P9P10T1 T2 T3012345TimeMean Task Time Rating (OCBS) P1P2P3P4P5P6P7P8P9P10T1 T2 T3012345TimeMean Task Difficulty Rating (OCBS) P1P2P3P4P5P6P7P8P9P10 Figure 5.2 Individual CWBS and OCBC scores. (a) Basic needs (CWBS) scores at T1, T2, and T3. (b) Activities of Daily Living (ADL; CWBS) scores at T1, T2, and T3. (c) Time associated with caregiving tasks (OCBS) at T1, T2, and T3. (d) Difficulty of caregiving tasks (OCBS) at T1, T2, and T3. A decrease in scores indicate a decrease in engagement in Meeting Basic Needs and a decrease in Task Difficulty. a b c d 138 T1 T2 T3020406080100TimeTotal Mental Health Score (MOS SF36)P1P2P3P4P5P6P7P8P9P10T1 T2 T3020406080100TimeTotal Vitality Score (MOS SF 36) P1P2P3P4P5P6P7P8P9P10T1 T2 T3010203040TimeTotal Reslience Score (CD RISC 10)P1P2P3P4P5P6P7P8P9P10 Figure 5.3 Individual MOS-SF 36 and CD RISC 10 scores. (a) Mental health scores (MOS-SF 36) at T1, T2, and T3. (b) Vitality scores (MOS-SF 36) at T1, T2, and T3. (c) Resilience scores (CD RISC 10) at T1, T2, and T3. An increase in score indicates improvements in Mental Health, Vitality, and Resilience. a b c 139 Feasibility Milestones Finding Remaining Milestones Future Recommendations Acceptability High acceptability with recommendations for future interventions. Some indication of behaviour change Determine needed Dose/Frequency Examine the impact of more sessions Possible Outcomes Mental Health and Resilience are possible outcomes. Should examine other outcomes related to leisure, including self-compassion and mental health (e.g., depression, guilt, anxiety, and stress) Determine the mode of delivery Evaluate the intervention when delivered by interventionist with carrying training and backgrounds. Peer mentors are suggested to be a promising mode of delivery. Hypothesized mechanisms of action ECR, BCon, Intentions, Emotions and SI are possible mechanisms of action associated with behaviour change Determine need for tailoring Participants in this study were all women and primarily partners of people with SCI. Necessary to investigate the intervention in other populations. Optimize intervention Examine the impact of intensity of included BCTs (i.e., goal setting, action planning, problem-solving and reframing, commitment) and the inclusion of BCTs which may address identified mechanisms of action. Table 5.6 Feasibility recommendations 140 General Discussion This dissertation aimed to systematically co-develop a theory-based behaviour change intervention to support family support providers of people with spinal cord injury (SCI) in partnership with three community-based SCI organizations. Specifically, I aimed to develop a theoretical understanding of the behaviours most impacted in family support providers, co-develop an evidence- and theory-based intervention to address those behaviours, and examined the acceptability and usefulness of the intervention. In this section, I present a summary of the findings, methodological contributions, theoretical implications, strengths, and limitations of this research, discuss future knowledge translation activities, and highlight critical areas for future research. 6.1 Summary of Findings The first study of this dissertation represents a theoretical analysis of the family support provider literature in the domain of SCI using the behaviour change wheel (BCW) (Michie et al., 2014) and an Integrated Knowledge Translation (IKT) approach (Canadian Institutes of Health Research, 2012). The results indicated that a wide range of behaviours were impacted by the family support provider role and were associated with positive and negative outcomes such as improved resilience and depression. Factors influencing behaviours were primarily related to social and environmental factors but varied by behaviour. These findings highlighted the importance of individualized and flexible interventions, as seen in other domains of family caregiving (Zarit & Femia, 2008). In contrast to other chronic conditions such as dementia (Abrahams et al., 2018), cancer (Applebaum & Breitbart, 2013), or stroke (Cheng et al., 2014), this scoping review revealed the paucity of interventions aiming to support family support providers of people with SCI. This study demonstrated the utility of the BCW to synthesize 141 diverse literature to develop a theoretical understanding of behaviours (Michie et al., 2014). To our knowledge, this study represents the first theoretical synthesis of the SCI family support provider literature to address the steps of the BCW necessary to develop behaviour change interventions. Additional research is needed to provide a more in-depth understanding of individual behaviours and the contexts in which they occur. However, the results offered preliminary guidance to develop theory-based behaviour change interventions for family support providers of people with SCI. The second study of this dissertation provided an in-depth qualitative examination of behaviours impacted by the family support provider role and associated outcome, which built upon the findings of the first study. This study supports the wealth of existing literature describing the outcomes correlated with the support provider role in the context of SCI, including common themes such as isolation, altered relationship dynamics, and impacts on mental and physical health (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016). In support of the Stress Process Model (Pearlin et al., 1990), the findings underscored the importance of leisure time activities, caregiving tasks, and accessing support. This research furthered this model by applying the Theoretical Domains Framework (TDF) (Cane et al., 2012) to explore the additional factors influencing impacted behaviours, including beliefs about consequences of behaviours, emotions, and social influences. Using the BCW and TDF to guide this research provided recommendations for behaviour change interventions for family support providers of people with SCI, allowing our partnership to consider multiple data sources for intervention development. The third study illustrates the synthesis of studies 1 and 2 using the BCW and an IKT approach to systematically co-design a behaviour change intervention for family support 142 providers of people with SCI. The co-design process occurred in partnership with three community-based organization staff and a panel of researchers, a person with lived experience, and an expert in intervention delivery. The resulting intervention targeted leisure time activities using adaptations of Brief Action Planning (Cole et al., 2016; Gutnick et al., 2014) and Brief Cognitive Reframing (Locke et al., 2019). Importantly, this study addressed calls in the behaviour change and partnership literature for improved reporting on the systematic and theory-based co-design process (e.g., (Davey et al., 2015; Hoekstra et al., 2020; Michie et al., 2017)). In doing so, this report provides a critical reflection on the co-design and reporting processes highlighting several concerns, including gaps in our understanding of the relationship between mechanisms of action and behaviour change techniques (BCTs), lack of guidance on reporting on IKT strategies, and the complexity of identifying and applying reporting guidance. The final study of this dissertation described the examination of the co-designed intervention to evaluate the acceptability and preliminary efficacy of the intervention guided by the process of the Obesity-Related Behavioural Intervention Trials (ORBIT) model. This study addressed a clear need in SCI support provider literature to examine interventions to support this population (Baker et al., 2017; Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016). We found the intervention was considered acceptable and showed promise in using tailored Brief Action Planning (Gutnick et al., 2014) and Brief Cognitive Reframing (Locke et al., 2019) to promote leisure time activity among family support providers of people with SCI. The preliminary results also suggested there may be some benefit of the intervention to participants’ emotional well-being. Several key recommendations were made for future pilot and feasibility research, including examining the necessary dose of the intervention, the influence of mode of delivery, and optimizing the included BCTs. This study demonstrated the initial usefulness of the 143 intervention and represents a critical first step to refining and optimizing future iterations of the intervention. 6.2 Methodological Contributions Together, these studies describe a systematic process for co-developing a theory-based behaviour change intervention. This stepwise approach allowed each subsequent study to build upon the findings of the last to provide increasingly comprehensive recommendations for intervention co-development. This systematic process was primarily guided by two intervention development frameworks, including the BCW and the ORBIT model. An IKT approach was also adopted throughout the entire process and framed each phase of co-development. Adopting an IKT approach promoted the continual tailoring of the research methodology to provide relevant and readily usable knowledge by our partner organizations. While applying these frameworks and approaches is not novel, their use alone or in combination is seldom reported. Thus, this dissertation provides a transparent example of the entire process of systematic intervention co-development using the BCW, ORBIT model, and an IKT approach. Reporting on the application of these approaches may allow for their evaluation to improve how they are used. The methodological contributions of this dissertation to each of the adopted frameworks and approaches are described below. 6.2.1 Applying the BCW to the Entire Research Process This research highlights the benefits of a rigorous and systematic process to develop behaviour change interventions using the BCW. The application of the BCW provided a mechanism to collectively describe the SCI family support provider literature in Study 1 to address all stages of intervention development. The BCW also facilitated the integration of multiple data sources, including Study 2, to develop a theory-based intervention. Given the 144 family support provider literature in SCI has not adopted a behaviour change theory approach, the application of the BCW provided a critical first step for intervention development. The comprehensive reporting of this process as described in Study 3 may allow for critical reflection on the application of the BCW. Indeed, Study 3 revealed several challenges in using the BCW, including the knowledge gap in the relationship between BCTs and the mechanisms of action they act upon to change behaviour. Without a clear understanding of the mechanisms through which BCTs change behaviour, it is difficult to determine how an intervention changed behaviour so that interventions may be replicated or improved in the future. Future research efforts should stress the reporting and testing of these hypothesized relationships to facilitate the evidence-based selection of BCTs to design rigorous behaviour change interventions. 6.2.2 The Obesity-Related Behavioural Intervention Trials Model The scoping review employed in the first study of this dissertation identified very few behavioural trials for family support providers of people with SCI. The few interventions that have been evaluated have used randomized-control trials (RCTs) to determine their efficacy and effectiveness. The systematic and exploratory approach adopted by this research guided by the BCW and the philosophy of the ORBIT model offered a method to develop an intervention from the ground up to meet the needs of family support providers of people with SCI. These types of exploratory designs may serve to understand what works and what does not using small-scale studies requiring minimal resources to prepare for movement into large-scale RCTs. This approach may reduce the risk of mismeasurement during RCTs or prematurely translating the intervention into practice (Bacon et al., 2014; Beets et al., 2021). The flexible application of the ORBIT model aligns with recent recommendations by Beets et al. (2021) for conducting 145 feasibility and pilot studies and provided one example of a methodological approach that can be taken to design and develop interventions using this model. 6.2.3 An Integrated Knowledge Translation Approach The steps described in this dissertation provide an overview of strategies that can be used in an IKT partnership in combination with research-driven frameworks such as the BCW and ORBIT model. IKT is becoming an increasingly common and sometimes mandated approach to research. However, reporting on IKT processes remains a persistent gap in the literature and leaves the IKT research body in its infancy (Boland et al., 2020; Gagliardi et al., 2016; Hoekstra et al., 2020). This lack of reporting may stem from the absence of a common language to describe IKT practices (Gagliardi et al., 2016). As such, little is known about the principles or strategies of IKT or the outcomes they may elicit as they are difficult to compare across research contexts if they are reported at all (Boland et al., 2020). Reporting on the IKT principles and strategies implemented in each study of this dissertation using available reporting recommendations (e.g., (Gainforth et al., 2020; Hoekstra et al., 2020)) may provide some evidence to compare and contrast IKT strategies. Comparing these strategies may facilitate our understanding of which IKT strategies work under what circumstances to elicit which outcomes. 6.2.4 Application of Network Analysis Applying the network analysis in the scoping review (Study 1) and thematic network analysis (Attride-Stirling, 2001) in the qualitative interview study (Study 2) represents a methodological contribution of this research. Adopting these approaches guided by the BCW provided a visual representation of the interconnection between barriers and facilitators, behaviours, and outcomes. In addition to contributing to the conceptualization of these relationships, this visual approach may be a useful knowledge translation product for research 146 users and/or partners aiming to use research findings. The visual data resulting from this method may provide a more easily interpreted representation of research findings across audiences. 6.3 Theoretical Contributions Using the BCW and TDF add several theoretical contributions to the family support provider literature in the SCI context. To our knowledge, this research represents one of the first analyses of behaviours impacted by the family support provider role through a behaviour change theory lens. The finding of Studies 1 and 2 highlights the role of both opportunity and motivation barriers in influencing leisure time activities and accessing supports and resources. These studies also suggested that behaviours that relate more directly to coping with the injury itself, such as intimacy and caregiving activities, may be influenced by capability. Together, the results of this dissertation indicate that multiple and varied interventions may be needed to influence behaviours impacted by the SCI family support provider role. Study 4 specifically provided a preliminary demonstration that goal-setting and problem-solving-oriented interventions may address opportunity barriers to leisure time activities. The preliminary results of this study also suggested reframing emotional or biased thoughts may be valuable in targeting motivational barriers to leisure time activities. The flexibility of these strategies may provide additional benefits as they can be easily individualized and applied to address multiple behaviours, which is a recommended intervention model for family support providers (Zarit & Femia, 2008) The findings of this research broadly support the Pearlin Stress Process Model, one of the most common models used to describe the morbidity of adverse outcomes in caregiver populations (Pearlin et al., 1990). This research highlights the impact of restriction of leisure time activity among family support providers of people with SCI and identified social support and coping mechanisms as potential influencing factors of stress associated with leisure time 147 restriction (Pearlin et al., 1990). Applying the TDF and BCW in studies 1 and 2 may add to this model by identifying additional levers of leisure time behaviours, including emotions associated with leisure time activity, beliefs about behaviours, and accessibility. Although the Pearlin Stress Process model is commonly used in the caregiving literature and provides valuable context to the findings of this research, this model was developed from literature based on Alzheimer's and dementia-related diseases (Pearlin et al., 1990). This dissertation may illustrate two critical differences between the contexts of SCI and dementia-related diseases from which many of the models used to understand caregiving are derived. First, the Pearlin Stress Process model identifies primary stressors specific to dementia-related diseases, such as the behaviours or cognitive status of the person receiving support (Pearlin et al., 1990). As physiological changes following an SCI are primarily characterized by functional rather than cognitive changes, behaviours and cognitive status of the person receiving support may not be universally shared stressors within the SCI family support provider population. Based on the differences in identified stressors between dementia and SCI contexts as identified in Studies 1 and 2, it may be useful for future research to examine the impact of these differences within this caregiving model. This dissertation suggests there may also be differences in the demographic composition of individuals represented by the Pearlin Stress Process Model. Consistent with the age-related demographics of people with SCI (Noonan et al., 2012), many of the participants included in Studies 1, 2, and 4 were parents of a person with SCI and outcomes and impacted behaviours may differ from that of partners or children. However, given the average age-related demographics of dementia-related diseases, it is rare for parents to support a child in this context (Manuel et al., 2016; Noonan et al., 2012). Together these findings suggest that models of 148 caregiving may need to be tested and tailored within the context of SCI to reflect the experiences of these family support providers more aptly. However, very little research has examined these models within the SCI context, highlighting a critical avenue for future research (Starkweather, 2011). 6.4 Practical Implications This dissertation provides several key practical implications for research in the area of family support and SCI and the provision of resources for family support providers of people with SCI. 6.4.1 Provide Evidence-Based Guidance for Interventions for Family Support Providers of People with SCI Behaviour change interventions for family support providers of people with SCI across various behaviours are urgently needed (Lynch & Cahalan, 2017; Smith et al., 2016). However, very few interventions have been evaluated for this population (Lynch & Cahalan, 2017; McKay et al., 2020; Smith et al., 2016). This dissertation provides several theory-based data sources to inform behaviour change interventions for family support providers of people with SCI. Studies 1 and 2 identified viable behaviours and behavioural constructs that interventions should address to promote the physical and mental health of family support providers of people with SCI. As SCI community-based organizations increasingly aim to extend their support to families of people with SCI, this dissertation may highlight priority areas to direct resources and preliminary recommendations for developing those resources. 6.4.2 Developing a Theory- and Evidence-Based Intervention In addition to the recommendations for future intervention research posed by this dissertation, Study 4 represents one of the first evaluations of a behaviour change theory-based 149 intervention for family support providers of people with SCI. While the results of this study may provide SCI community-based organizations with techniques that could be taught to and applied by staff and volunteers, further testing is needed before the practical application of the full intervention should occur. Notably, this study addressed several key design and feasibility milestones outlined by the ORBIT model (Czajkowski et al., 2015) and Beets et al. (2021). By addressing these milestones, this study provided the essential first steps for future research aiming to establish the effectiveness of this intervention using large-scale trials. 6.5 General Strengths The adoption of an IKT approach was a significant strength of each study in this dissertation. The inclusion of diverse expertise in research and community application strengthened the research methods, interpretation, and translation of the research findings. Equitable collaboration at the outset ensured the initial research questions were relevant and valuable to the community partner organizations. The inclusion of diverse expertise may have also strengthened research methods and materials to better answer research questions in the context of family support providers of people with SCI. Partnering with community-based organizations that provide resources to family support providers of people with SCI may have aided in the contextualization of the development process so the intervention resulting from this research may be more feasibly implemented following further investigation. The BCW also provided a rigorous approach to developing the resulting intervention. The BCW and associated frameworks, including the Capability, Opportunity, Motivation – Behaviour (COM-B) model and the TDF, guided the systematic identification and characterization of the factors influencing target behaviours and methods to link them to promising intervention strategies. Using this BCW throughout the research process also allowed 150 for the seamless integration of Studies 1 and 2 to inform the final intervention examined in Study 4. Use of and comprehensive reporting using the BCW may facilitate future evaluation. 6.6 General Limitations The relevance of the findings of this research may be limited due to the diversity of participants included in the study samples. Namely, the samples in Study 2 and 4 were primarily women of white ethnicity who provided support to spouses or partners. Overrepresentation of women is common in the SCI family support provider literature and caregiver literature as a whole (Smith et al., 2016). This finding has critical implications for the interpretation of caregiver research as demographic characteristics such as gender, ethnicity, sexuality, and (dis)ability may influence many factors, including adopted roles, outcomes associated with those roles, and the effectiveness of interventions (Houde, 2002; Pinquart & Sörensen, 2005). In the case of gender, distinctions are often not made as sample sizes of genders other than women are typically small or non-existent, as seen in this research (Houde, 2002). Research also suggests that ethnicity may be associated with different outcomes related to family support and SCI and that interventions effects may vary (George et al., 2014; Pinquart & Sörensen, 2005; Sörensen & Pinquart, 2005). These differences may not be reflected by these research findings (Pinquart & Sörensen, 2005). Work to achieve greater diversity within this area of research should be a priority. Finally, this dissertation represents one way of understanding leisure time activities and other behaviours associated with providing support to someone with an SCI through one overarching framework. It is possible that applying a single behaviour change theory or an alternative framework may have produced different results. While using the BCW and associated tools, including COM-B and the TDF, provided a systematic and evidence-based framework to 151 design the intervention, this process may have narrowed the focus of this research and limited the possibility of more valuable and creative options. 6.7 Future Research and Next Steps Given the scarcity of intervention research targeting family support providers of people with SCI, any additional research in this area is urgently needed. This dissertation highlighted several key next steps for future research and the application of the co-developed intervention. Further investigation to evaluate the feasibility of the study and intervention is necessary to optimize the intervention, identify the necessary dose, and examine the influence of mode of delivery. Future areas of research may also include a Sequential Multiple Assignment Randomized Trial (SMART) to optimize the intervention by examining the independent effects of Brief Action Planning and Brief Cognitive Reframing (Collins et al., 2007). Understanding the individual influence of these two intervention strategies would allow for the identification of any redundancies or provide further information about the context under which each strategy provides the most benefit. Additionally, this approach would answer calls in the caregiver literature to further evaluate intervention mechanisms (Zarit, 2018). Determining the therapeutic dose of the intervention is a critical next step in the development process. Study 4 of this dissertation only tested two brief sessions with family support providers of people with SCI and many participants found the sense of commitment to the intervention via follow-up surveys and interviews to be crucial to their success. Notably, research suggests that longer exposure to the treatment may result in better outcomes for family support providers (Sörensen et al., 2002; Zarit & Femia, 2008). Identifying the optimal dose would ensure individuals participating in the intervention receive the best possible outcomes and 152 provide community organizations with evidence-based recommendations for implementing the intervention. Delivery of the intervention by peers was highlighted as a priority in the findings of Studies 1, 2 and 4. This mode of delivery was also deemed highly feasible for the SCI community-based organizations partners who aim to implement the intervention. Further research is necessary to understand the outcomes of peer-delivery. Methods such as those employed by Gainforth et al. (2015) should be used to understand the required training for peers and the feasibility of peer-delivery. The influence of intervention modality should also be explored to understand the added impacts of face-to-face, audio-video, or audio-only delivery. For example, Shaw et al. (2021) examined differences in therapeutic outcomes of peer-mentorship via audio-video or audio-only modalities. Given the scarcity of resources for family support providers of people with SCI, certain modalities may enhance the reach of interventions due to regional differences or differences in access to technology. The intervention investigated in Study 4 provides a useful example as the intervention was delivered via audio-video technology from Kelowna, British Columbia, to participants across British Columbia and Ontario. As the impact of modality on intervention outcomes for family support providers of people with SCI has been minimally explored (Elliott et al., 2008; Rivera et al., 2003), it may be strategic to compare the cost-benefits of various intervention modalities to optimize future interventions. Importantly, this intervention only targeted one of the many behaviours identified in Studies 1 and 2. Research suggests that flexible and personalized interventions are most useful for family support providers as they face many different challenges at different times (Sörensen et al., 2002; Zarit & Femia, 2008). Therefore, future research should examine the feasibility and 153 added benefits of the broad application of the intervention targeting multiple behaviours. Interventions targeting multiple behaviours should aim to conduct moderator analyses to understand the influence of support provider characteristics such as relationship to the person with SCI or time post-injury to understand differences in need. Understanding how these characteristics influence the outcomes of the intervention may facilitate the development of training programs to deliver the intervention and the tailoring of the intervention to specific groups. 6.8 Conclusion This dissertation demonstrates the systematic co-development of a theory- and evidence-based intervention to promote leisure time activity among family support providers of people with SCI. This dissertation addresses a significant gap in the literature as very few interventions exist to support this population or have been developed using behaviour change theory. This research made theoretical advancements by applying the BCW and TDF to understand the factors that influence the behaviours impacted by the family support provider role and SCI. This dissertation uniquely adopted and reported on an IKT partnership while using the BCW throughout the entire research process, providing methodological implications for future research in theory-based intervention co-development. The findings suggest that many behaviours are impacted by the support provider role, which may translate to outcomes on an individual and interpersonal level. Leisure time activity appears to be restricted in family support providers of people with SCI. Preliminary findings from examining the co-developed intervention using Brief Action Planning and Brief Cognitive Reframing show promise in promoting leisure-time activities. Further research is needed to understand the necessary intervention dose and to optimize the mode of delivery and behaviour change techniques. 154 155 Bibliography Abrahams, R., Liu, K. P. Y., Bissett, M., Fahey, P., Cheung, K. S. L., Bye, R., Chaudhary, K., & Chu, L.-W. (2018). Effectiveness of interventions for co-residing family caregivers of people with dementia: Systematic review and meta-analysis. Australian Occupational Therapy Journal, 65(3), 208–224. https://doi.org/https://doi.org/10.1111/1440-1630.12464 Affleck, W., Glass, K. C., & Macdonald, M. E. (2012). The Limitations of Language: Male Participants, Stoicism, and the Qualitative Research Interview. American Journal of Men’s Health, 7(2), 155–162. https://doi.org/10.1177/1557988312464038 Albrecht, L., Archibald, M., Arseneau, D., & Scott, S. D. (2013). Development of a checklist to assess the quality of reporting of knowledge translation interventions using the Workgroup for Intervention Development and Evaluation Research (WIDER) recommendations. Implementation Science, 8, 52. https://doi.org/10.1186/1748-5908-8-52 Anderson, K. D., Johnson, R. D., Stiens, S. A., & L, E. S. (2007). The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 45(5), 328–337. https://doi.org/10.1038/sj.sc.3101977 Angel, S., & Buus, N. (2011). The experience of being a partner to a spinal cord injured person: A phenomenological-hermeneutic study. International Journal of Qualitative Studies on Health and Well-Being, 6(4), 1–11. https://doi.org/10.3402/qhw.v6i4.7199 Applebaum, A. J., & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative and Supportive Care, 11(3), 231–252. https://doi.org/DOI: 10.1017/S1478951512000594 Arksey, H., & O’Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616 Atkins, L., Francis, J., Islam, R., O’Connor, D., Patey, A., Ivers, N., Foy, R., Duncan, E. M., Colquhoun, H., Grimshaw, J. M., Lawton, R., & Michie, S. (2017). A guide to using the Theoretical Domains Framework of behaviour change to investigate implementation problems. Implementation Science, 77. https://doi.org/10.1186/s13012-017-0605-9 Attride-Stirling, J. (2001). Thematic networks: an analytic tool for qualitative research. Qualitative Research, 1(3), 385–405. https://doi.org/10.1177/146879410100100307 Avishai, A., Conner, M., & Sheeran, P. (2019). Setting Realistic Health Goals: Antecedents and Consequences. Annals of Behavioral Medicine, 53(12), 1020–1031. https://doi.org/10.1093/abm/kaz012 Bacon, S. L., Lavoie, K. L., Ninot, G., Czajkowski, S., Freedland, K. E., Michie, S., Montgomery, P., Powell, L. H., Spring, B., & (IBTN), for the I. B. T. N. (2014). An 156 International Perspective on Improving the Quality and Potential of Behavioral Clinical Trials. Current Cardiovascular Risk Reports, 9(1), 427. https://doi.org/10.1007/s12170-014-0427-0 Baker, A., Barker, S., Sampson, A., & Martin, C. (2017). Caregiver outcomes and interventions: A systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clinical Rehabilitation, 33(1), 1–16. https://doi.org/10.1177/0269215516639357 Bambara, J. K., Owsley, C., Wadley, V., Martin, R., Porter, C., & Dreer, L. E. (2009). Family Caregiver Social Problem-Solving Abilities and Adjustment to Caring for a Relative with Vision Loss. Investigative Ophthalmology & Visual Science, 50(4), 1585–1592. https://doi.org/10.1167/iovs.08-2744 Banner, D., Bains, M., Carroll, S., Kandola, D. K., Rolfe, D. E., Wong, C., & Graham, I. D. (2019). Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet? Research Involvement and Engagement, 5(1), 8. https://doi.org/10.1186/s40900-019-0139-1 Barclay, L., & Hilton, G. M. (2019). A scoping review of peer-led interventions following spinal cord injury. Spinal Cord, 57(8), 626–635. https://doi.org/10.1038/s41393-019-0297-x Barrable, B., Thorogood, N., Noonan, V., Tomkinson, J., Joshi, P., Stephenson, K., Barclay, J., & Kovacs Burns, K. (2014). Model for bridging the translational “valleys of death” in spinal cord injury research. Journal of Healthcare Leadership, 6, 15. https://doi.org/10.2147/JHL.S58649 BCT Taxonomy Training. (2019). University College London. https://www.bct-taxonomy.com/ Beach, S. R., Schulz, R., Donovan, H., & Rosland, A.-M. (2021). Family Caregiving During the COVID-19 Pandemic. The Gerontologist, 61(5), 650–660. https://doi.org/10.1093/geront/gnab049 Beauregard, L., & Noreau, L. (2009). Spouses of persons with spinal cord injury: Impact and coping. British Journal of Social Work, 40(6), 1945–1959. https://doi.org/10.1093/bjsw/bcp140 Beets, M. W., von Klinggraeff, L., Weaver, R. G., Armstrong, B., & Burkart, S. (2021). Small studies, big decisions: the role of pilot/feasibility studies in incremental science and premature scale-up of behavioral interventions. Pilot and Feasibility Studies, 7(1), 173. https://doi.org/10.1186/s40814-021-00909-w Behaviour. (n.d.). Oxford Dictionary Online. https://en.oxforddictionaries.com/definition/behaviour Boland, L., Kothari, A., McCutcheon, C., Graham, I. D., & Network, for the I. K. T. R. (2020). Building an integrated knowledge translation (IKT) evidence base: colloquium proceedings and research direction. Health Research Policy and Systems, 18(1), 8. 157 https://doi.org/10.1186/s12961-019-0521-3 Borgatti, S. P. (2002). Netdraw Network Visualization. Analytic Technologies. Borgatti, S. P., Everett, M. G., & Freeman, L. C. (2002). Ucinet 6 for Windows: Software for Social Network Analysis. Analytic Technologies. Boschen, K. A., & Gargaro, J. (2009). Experiential outcomes of the SCI support provider role. Topics in Spinal Cord Injury Rehabilitation, 14(4), 69–87. https://doi.org/http://dx.doi.org/10.1310/sci1404-69 Boschen, K. A., Gargaro, J., & Tonack, M. I. (2005). Community integration and quality of life comparisons among spinal cord injured, support provider, and comparative samples. Topics in Spinal Cord Injury Rehabilitation, 10(4), 116–134. Boschen, K. A., Tonack, M. I., & Gargaro, J. (2003). Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 26(3), 157–164. https://doi.org/10.1097/01.mrr.0000088440.78481.1f Boschen, K. A., Tonack, M. I., & Gargaro, J. (2005). The Impact of Being a Support Provider to a Person Living in the Community With a Spinal Cord Injury. Rehabilitation Psychology, 50(4), 397–407. https://doi.org/http://dx.doi.org/10.1037/0090-5550.50.4.397 Botticello, A. L., Tulsky, D., Heinemann, A., Charlifue, S., Kalpakjian, C., Slavin, M., Byrne, R., & Rohrbach, T. (2019). Contextualizing disability: a cross-sectional analysis of the association between the built environment and functioning among people living with spinal cord injury in the United States. Spinal Cord, 57(2), 100–109. https://doi.org/10.1038/s41393-018-0186-8 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806 Braun, V., & Clarke, V. (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health, 13(2), 201–216. https://doi.org/10.1080/2159676X.2019.1704846 Burton, L., Schulz, R., Jackson, S., Hirsch, C., & Zdaniuk, B. (2000). Transitions in spousal caregiving: Experience from the Caregiver Health Effects Study (CHES). The Gerontologist, 40, 73. Bushnik, T., Wright, J., & Burdsall, D. (2007). Personal attendant turnover: Association with level of injury, burden of care, and psychosocial outcome. Topics in Spinal Cord Injury 158 Rehabilitation, 12(3), 66–76. https://doi.org/10.1310/sci1203-66 Butterworth, P., Pymont, C., Rodgers, B., Windsor, T. D., & Anstey, K. J. (2010). Factors that explain the poorer mental health of caregivers: Results from a community survey of older Australians. Australian and New Zealand Journal of Psychiatry, 44(7), 616–624. https://doi.org/10.3109/00048671003620202 Byrt, T., Bishop, J., & Carlin, J. B. (1993). Bias, prevalence and kappa. Journal of Clinical Epidemiology, 46(5), 423–429. https://doi.org/0895-4356(93)90018-V Cabrera, I., Márquez-González, M., Gallego-Alberto, L., Pedroso-Chaparro, M. del S., Barrera-Caballero, S., & Losada, A. (2021). To pay attention or not: The associations between attentional bias towards negative emotional information and anxiety, guilt feelings, and experiential avoidance in dementia family caregivers. Aging & Mental Health, 1–9. https://doi.org/10.1080/13607863.2021.1871883 Camden, C., Shikako-Thomas, K., Nguyen, T., Graham, E., Thomas, A., Sprung, J., Morris, C., & Russell, D. J. (2015). Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts. Disability and Rehabilitation, 37(15), 1390–1400. https://doi.org/10.3109/09638288.2014.963705 Campbell-Sills, L., Forde, D. R., & Stein, M. B. (2009). Demographic and childhood environmental predictors of resilience in a community sample. Journal of Psychiatric Research, 43(12), 1007–1012. https://doi.org/10.1016/j.jpsychires.2009.01.013 Campbell-Sills, L., & Stein, M. B. (2007). Psychometric analysis and refinement of the connor–davidson resilience scale (CD-RISC): Validation of a 10-item measure of resilience. Journal of Traumatic Stress, 20(6), 1019–1028. https://doi.org/https://doi.org/10.1002/jts.20271 Canadian Institutes of Health Research. (2012). Guide to knowledge translation planning at CIHR: Integrated and end-of-grant approaches. Canadian Institutes of Health Research. Cane, J., O’Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7, 37. https://doi.org/https://doi.org/10.1186/1748-5908-7-37 Carers Canada (Vol. 2017). (n.d.). Carers Canada. http://www.carerscanada.ca/ Carey, E. F., Horan, M., Johnston, M., West, R., & Michie, S. R. N. (2016). Mode of Delivery of Behaviour Change Interventions Taxonomy version 0 (MoDTv0). http://www.ucl.ac.uk/human-behaviour-change/pdfs/tat-feedback.pdf Caring Road Support Network: The Online Community of Family Caregivers. (n.d.). CaringRoad.org. http://www.caringroad.org/ Carswell, A., McColl, M. A., Baptiste, S., Law, M., Polatajko, H., & Pollock, N. (2004). The 159 Canadian Occupational Performance Measure: A Research and Clinical Literature Review. Canadian Journal of Occupational Therapy, 71(4), 210–222. https://doi.org/10.1177/000841740407100406 Chan, R. C. K. (2000a). How does spinal cord injury affect marital relationship? A story from both sides of the couple. Disability and Rehabilitation, 22(17), 764–775. https://doi.org/10.1080/09638280050200269 Chan, R. C. K. (2000b). Stress and coping in spouses of persons with spinal cord injuries. Clinical Rehabilitation, 14(2), 137–144. https://doi.org/10.1191/026921500675826560 Charlifue, S. B., Botticello, A., Kolakowsky-Hayner, S. A., Richards, J. S., & Tulsky, D. S. (2016). Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal Cord, 54(9), 732–736. https://doi.org/10.1038/sc.2016.25 Chemtob, K., Caron, J. G., Fortier, M. S., Latimer-Cheung, A. E., Zelaya, W., & Sweet, S. N. (2018). Exploring the peer mentorship experiences of adults with spinal cord injury. Rehabilitation Psychology, 63(4), 542–552. https://doi.org/10.1037/rep0000228 Chen, H.-Y., & Boore, J. R. P. (2009). Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 18(2), 174–182. https://doi.org/10.1111/j.1365-2702.2008.02355.x Cheng, H. Y., Chair, S. Y., & Chau, J. P.-C. (2014). The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis. Patient Education and Counseling, 95(1), 30–44. https://doi.org/https://doi.org/10.1016/j.pec.2014.01.005 Cobb, J. E., Leblond, J., Dumont, F. S., & Noreau, L. (2018). Perceived influence of intrinsic/extrinsic factors on participation in life activities after spinal cord injury. Disability and Health Journal. https://doi.org/https://doi.org/10.1016/j.dhjo.2018.03.004 Cohen, J. (1968). Weighted kappa: Nominal scale agreement provision for scaled disagreement or partial credit. Psychological Bulletin, 70(4), 213–220. https://doi.org/10.1037/h0026256 Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). L. Erlbaum Associates. https://doi.org/https://doi.org/10.4324/9780203771587 Cole, S., Gutnick, D., Reims, K., & Davis, C. (2016). The Brief Action Planning Guide: A Self-Management Support Tool for Chronic Conditions, Health, and Well-being. Center Foor Collaboration, Motivation and Innovation. https://centrecmi.ca/wp-content/uploads/2018/11/BAP_guide_2016-08-08.pdf Collins, L. M., Murphy, S. A., & Strecher, V. (2007). The multiphase optimization strategy (MOST) and the sequential multiple assignment randomized trial (SMART): new methods for more potent eHealth interventions. American Journal of Preventive Medicine, 32(5 Suppl), S112–S118. https://doi.org/10.1016/j.amepre.2007.01.022 160 Conn, V. S. (2012). Unpacking the Black Box: Countering the Problem of Inadequate Intervention Descriptions in Research Reports. Western Journal of Nursing Research, 34(4), 427–433. https://doi.org/10.1177/0193945911434627 Coupe, N., Peters, S., Rhodes, S., & Cotterill, S. (2019). The effect of commitment-making on weight loss and behaviour change in adults with obesity/overweight; a systematic review. BMC Public Health, 19(1), 816. https://doi.org/10.1186/s12889-019-7185-3 Cradock, K. A., ÓLaighin, G., Finucane, F. M., McKay, R., Quinlan, L. R., Martin Ginis, K. A., & Gainforth, H. L. (2017). Diet behavior change techniques in type 2 diabetes: A systematic review and meta-analysis. Diabetes Care, 40(12). https://doi.org/10.2337/dc17-0462 Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Journal of Medicine, 337(5), 587–592. https://doi.org/10.1136/bmj.a1655 Craig, P., & Petticrew, M. (2013). Developing and evaluating complex interventions: reflections on the 2008 MRC guidance. International Journal of Nursing Studies, 50. https://doi.org/10.1016/j.ijnurstu.2012.09.009 Cranswick, K., & Dosman, D. (2008). Eldercare: what we know today (S. Canada (Ed.); p. 49). Statistics Canada. Crayton, E., Fahey, M., Ashworth, M., Besser, S. J., Weinman, J., & Wright, A. J. (2017). Psychological Determinants of Medication Adherence in Stroke Survivors: a Systematic Review of Observational Studies. Annals of Behavioral Medicine, 51(6), 833–845. https://doi.org/10.1007/s12160-017-9906-0 Cumming, G. (2013). Understanding the new statistics: Effect sizes, confidence intervals, and meta-analysis. Routledge. Czajkowski, S. M., Powell, L. H., Adler, N., Naar-King, S., Reynolds, K. D., Hunter, C. M., Laraia, B., Olster, D. H., Perna, F. M., Peterson, J. C., Epel, E., Boyington, J. E., & Charlson, M. E. (2015). From ideas to efficacy: The ORBIT model for developing behavioral treatments for chronic diseases. Health Psychology, 34(10), 971–982. https://doi.org/10.1037/hea0000161 D’Ippolito, M., Aloisi, M., Azicnuda, E., Silvestro, D., Giustini, M., Verni, F., Formisano, R., & Bivona, U. (2018). Changes in Caregivers Lifestyle after Severe Acquired Brain Injury: A Preliminary Investigation. BioMed Research International, 2018, 2824081. https://doi.org/10.1155/2018/2824081 D’Zurilla, T. J., & Nezu, A. M. (1999). Problem-Solving Therapy (2nd ed.). Springer . D’Zurilla, T. J., Nezu, A. M., & Maydeu-Olivares, A. (2002). Manual for the social problem-solving inventory-revised. North Tonawanda, NY: Multi-Health Systems. 161 Davey, P., Peden, C., Charani, E., Marwick, C., & Michie, S. (2015). Time for action—Improving the design and reporting of behaviour change interventions for antimicrobial stewardship in hospitals: Early findings from a systematic review. International Journal of Antimicrobial Agents, 45(3), 203–212. https://doi.org/10.1016/j.ijantimicag.2014.11.014 Davidson, K. W., Mogavero, J. N., & Rothman, A. J. (2020). Using early phase studies to advance intervention research: The science of behavior change. Health Psychology, 39(9), 731–735. https://doi.org/10.1037/hea0000897 de Bruin, M., Black, N., Javornik, N., Viechtbauer, W., Eisma, M. C., Hartman-Boyce, J., Williams, A. J., West, R., Michie, S., & Johnston, M. (2020). Underreporting of the active content of behavioural interventions: a systematic review and meta-analysis of randomised trials of smoking cessation interventions. Health Psychology Review, 1–19. https://doi.org/10.1080/17437199.2019.1709098 DeVivo, M. J., & Richards, J. S. (1996). Marriage rates among persons with spinal cord injury. Rehabilitation Psychology, 41(4), 321–339. https://doi.org/10.1037/h0092836 Dickinson, C., Dow, J., Gibson, G., Hayes, L., Robalino, S., & Robinson, L. (2017). Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. International Psychogeriatrics, 29(1), 31–43. https://doi.org/10.1017/S1041610216001447 Dickson, A., O’Brien, G., Ward, R., Allan, D., & O’Carroll, R. (2010). The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative phenomenological analysis of the spouse’s experience. Psychology & Health, 25(9), 1101–1120. https://doi.org/10.1080/08870440903038949 Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The Satisfaction With Life Scale. Journal of Personality Assessment, 49(1), 71–75. https://doi.org/10.1207/s15327752jpa4901_13 Dijkers, M. P. (2010). Issues in the conceptualization and measurement of participation: An overview. Archives of Physical Medicine and Rehabilitation, 91(9 SUPPL.), S5. https://doi.org/10.1016/j.apmr.2009.10.036 Dombrowski, S. U., O’Carroll, R. E., & Williams, B. (2016). Form of delivery as a key ‘active ingredient’ in behaviour change interventions. British Journal of Health Psychology, 21(4), 733–740. https://doi.org/https://doi.org/10.1111/bjhp.12203 Dreer, L. E., Elliott, T. R., Shewchuk, R., Berry, J. W., & Rivera, P. (2007). Family caregivers of persons with spinal cord injury: Predicting caregivers at risk for probable depression. Rehabilitation Psychology, 52(3), 351–357. https://doi.org/10.1037/0090-5550.52.3.351 Duncan, E., Cathain, A., Rousseau, N., Croot, L., Sworn, K., Turner, K., Yardley, L., & Hoddinott, P. (2020). Guidance for reporting intervention development studies in health 162 research (GUIDED): an evidence-based consensus study. BMJ Open, 10(4), e033516. https://doi.org/10.1136/bmjopen-2019-033516 Dunn, C., Deroo, L., & Rivara, F. P. (2001). The use of brief interventions adapted from motivational interviewing across behavioral domains: a systematic review. Addiction, 96(12), 1725–1742. https://doi.org/10.1046/j.1360-0443.2001.961217253.x Dyck, D. D. G., Weeks, D. L. D., Smith, C., & Shaw, M. (2021). Multiple family group intervention for spinal cord injury: Quantitative and qualitative comparison with standard education. The Journal of Spinal Cord Medicine, 44(4), 572–582. https://doi.org/10.1080/10790268.2019.1710946 Ellenbogen, P. S., Meade, M. A., Jackson, M. N., & Barrett, K. (2006). The impact of spinal cord injury on the employment of family caregivers. Journal of Vocational Rehabilitation, 25(1), 35–44. Elliott, T. R., & Berry, J. W. (2009). Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: A randomized controlled trial. Journal of Clinical Psychology, 65(4), 406–422. https://doi.org/10.1002/jclp.20527 Elliott, T. R., Berry, J. W., Richards, J. S., & Shewchuk, R. M. (2014). Resilience in the initial year of caregiving for a family member with a traumatic spinal cord injury. Journal of Consulting and Clinical Psychology, 82(6), 1072–1086. https://doi.org/10.1037/a0037593 Elliott, T. R., Brossart, D., Berry, J. W., & Fine, P. R. (2008). Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: A randomized controlled trial. Behaviour Research and Therapy, 46(11), 1220–1229. https://doi.org/10.1016/j.brat.2008.08.004 Employer Panel for Caregivers. (2015). When Work and Caregiving Collide: How Employers Can Support Their Employees Who Are Caregivers. Employment and Social Development Canada. http://deslibris.ca/ID/245877 EndNote (X8.2). (2018). Clarivate Analytics. EQUATOR Network. (n.d.). What is a reporting guideline? Welcome Open Research. https://www.equator-network.org/about-us/what-is-a-reporting-guideline/ Family Caregiver Alliance. (n.d.). https://www.caregiver.org/definitions-0 Family Caregiver Toolbox. (2017). National Family Caregivers Association DBA Caregiver Action Network. http://www.caregiveraction.org/family-caregiver-toolbox Foster, M., Amsters, D., & Carlson, G. (2005). Spinal cord injury and family caregivers: A description of care and perception of service need. Australian Journal of Primary Health, 11(1), 91–101. https://doi.org/10.1071/PY05012 163 Fougeyrollas, P., & Noreau, L. (2000). Long-term consequences of spinal cord injury on social participation: the occurrence of handicap situations. Disability and Rehabilitation, 22(4), 170–180. Frias, C. E., Garcia‐Pascual, M., Montoro, M., Ribas, N., Risco, E., & Zabalegui, A. (2020). Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review. Journal of Advanced Nursing, 76(3), 787–802. https://doi.org/10.1111/jan.14286 Gagliardi, A. R., Berta, W., Kothari, A., Boyko, J., & Urquhart, R. (2016). Integrated knowledge translation (IKT) in health care: a scoping review. Implementation Science, 11, 38. https://doi.org/10.1186/s13012-016-0399-1 Gainforth, H. L., Giroux, E. E., Shaw, R. B., Casemore, S., Clarke, T. Y., McBride, C. B., Garnett, C. V, & Sweet, S. N. (2019). Investigating Characteristics of Quality Peer Mentors With Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation. https://doi.org/https://doi.org/10.1016/j.apmr.2019.04.019 Gainforth, H. L., Hoekstra, F., McKay, R. C., McBride, C. B., Sweet, S. N., Martin Ginis, K. A., Anderson, K., Chernesky, J., Clarke, T., Forwell, S., Maffin, J., McPhail, L. T., Mortenson, W. Ben, Scarrow, G., Schaefer, L., Sibley, K. M., Athanasopoulos, P., & Willms, R. (2020). Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership. Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2020.09.393 Gainforth, H. L., Latimer-Cheung, A. E., Davis, C., Casemore, S., & Martin Ginis, K. A. (2015). Testing the feasibility of training peers with a spinal cord injury to learn and implement brief action planning to promote physical activity to people with spinal cord injury. The Journal of Spinal Cord Medicine, 38(4), 515–525. https://doi.org/10.1179/2045772314Y.0000000239 Gainforth, H. L., Lorencatto, F., Erickson, K., West, R., & Michie, S. (2016). Characterizing clients’ verbal statements in behavioural support interventions: The case of smoking cessation. British Journal of Health Psychology, 21(3), 600–612. https://doi.org/10.1111/bjhp.12188 Gainforth, H. L., West, R., & Michie, S. (2015). Assessing Connections Between Behavior Change Theories Using Network Analysis. Annals of Behavioral Medicine, 49(5 LB-Gainforth2015), 754–761. https://doi.org/10.1007/s12160-015-9710-7 Gajraj-Singh, P. (2011). Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 49(8), 928–934. https://doi.org/10.1038/sc.2011.15 Gaume, J., Bertholet, N., Faouzi, M., Gmel, G., & Daeppen, J.-B. (2010). Counselor motivational interviewing skills and young adult change talk articulation during brief 164 motivational interventions. Journal of Substance Abuse Treatment, 39(3), 272–281. https://doi.org/10.1016/j.jsat.2010.06.010 George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104(2), e16–e31. https://doi.org/10.2105/AJPH.2013.301706 Giroux, E. E., Casemore, S., Clarke, T. Y., McBride, C. B., Wuerstl, K. R., & Gainforth, H. L. (2020). Enhancing participation while aging with spinal cord injury: applying behaviour change frameworks to develop intervention recommendations. Spinal Cord, 59(6), 665–674. https://doi.org/10.1038/s41393-020-00555-8 Glanz, K., & Bishop, D. B. (2010). The role of behavioral science theory in development and implementation of public health interventions. Annual Review of Public Health, 31, 399–418. https://doi.org/https://doi.org/10.1146/annurev.publhealth.012809.103604 Glasgow, R. E., & Linnan, L. A. (2008). Evaluation of theory-based interventions. In Health behavior and health education: Theory, research, and practice (Vol. 4, pp. 487–508). Graham, I. D., Logan, J., Harrison, M., Straus, S., Tetroe, J., Caswell, W., & Robinson, N. (2006). Lost in knowledge translation: Time for a map? Journal of Continuing Education in the Health Professions, 26(1), 13–24. https://doi.org/10.1002/chp.47 Graham, I. D., Tetroe, J., & KT Theories Research Group. (2007). Some Theoretical Underpinnings of Knowledge Translation. Academic Emergency Medicine, 14(11), 936–941. https://doi.org/10.1197/j.aem.2007.07.004 Grimshaw, J. M., Eccles, M. P., Lavis, J. N., Hill, S. J., & Squires, J. E. (2012). Knowledge translation of research findings. Implementation Science, 7(1), 50. https://doi.org/10.1186/1748-5908-7-50 Gutnick, D., Reims, K., Davis, C., Gainforth, H., Jay, M., & Cole, S. (2014). Brief Action Planning to Facilitate Behavior Change and Support Patient Self- Management. Journal of Clinical Outcomes Management, 21(1), 17–29. Hagger, M. S., & Luszczynska, A. (2014). Implementation Intention and Action Planning Interventions in Health Contexts: State of the Research and Proposals for the Way Forward. Applied Psychology : Health and Well-Being, 6(1), 1–47. https://doi.org/10.1111/aphw.12017 Hall, J., Morton, S., Hall, J., Clarke, D. J., Fitzsimons, C. F., English, C., Forster, A., Mead, G. E., & Lawton, R. (2020). A co-production approach guided by the behaviour change wheel to develop an intervention for reducing sedentary behaviour after stroke. Pilot and Feasibility Studies, 6(115). https://doi.org/10.1186/s40814-020-00667-1 Hammell, K. R. W. (2010). Spinal cord injury rehabilitation research: Patient priorities, current 165 deficiencies and potential directions. Disability and Rehabilitation, 32(14), 1209–1218. https://doi.org/10.3109/09638280903420325 Hardcastle, S. J., Fortier, M., Blake, N., & Hagger, M. S. (2017). Identifying content-based and relational techniques to change behaviour in motivational interviewing. Health Psychology Review, 11(1), 1–16. https://doi.org/10.1080/17437199.2016.1190659 Hoekstra, F., Mrklas, K. J., Khan, M., McKay, R. C., Vis-Dunbar, M., Sibley, K. M., Nguyen, T., Graham, I. D., & Gainforth, H. L. (2020). A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature. Health Research Policy and Systems, 18(1), 51. https://doi.org/10.1186/s12961-020-0544-9 Hoekstra, F., Schaefer, L., Athanasopoulos, P., & Gainforth, H. L. H. L. (2021). Researchers’ and Research Users’ Experiences With and Reasons for Working Together in Spinal Cord Injury Research Partnerships: A Qualitative Study. International Journal of Health Policy and Management. https://doi.org/10.34172/ijhpm.2021.35 Hoffmann, T. C., Glasziou, P. P., Boutron, I., Milne, R., Perera, R., Moher, D., Altman, D. G., Barbour, V., Macdonald, H., Johnston, M., Lamb, S. E., Dixon-Woods, M., McCulloch, P., Wyatt, J. C., Chan, A.-W., & Michie, S. (2014). Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ : British Medical Journal, 348, g1687. https://doi.org/10.1136/bmj.g1687 Hollander, M. J., Liu, G., & Chappell, N. L. (2009). Who Cares and How Much? The Imputed Economic Contribution to the Canadian Healthcare System of Middle-Aged and Older Unpaid Caregivers Providing Care to The Elderly. Healthcare Quarterly, 12(2), 42–49. https://doi.org/10.12927/hcq.2009.20660 Houde, S. C. (2002). Methodological issues in male caregiver research: an integrative review of the literature. Journal of Advanced Nursing, 40(6), 626–640. https://doi.org/10.1046/j.1365-2648.2002.02423.x Hsieh, H.-F., & Shannon, S. E. (2005). Three Approaches to Qualitative Content Analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687 Institute, T. N. A. for C. and A. P. P. (2015). Caregiving in the US. The National Caregiving Alliance and AARP Public Policy Institute. https://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Executive-Summary-June-4_WEB.pdf Ioannidis, J. P. A. (2005). Why most published research findings are false. PLoS Medicine, 2(8), e124–e124. https://doi.org/10.1371/journal.pmed.0020124 Jadalla, A., Page, M., Ginex, P., Coleman, M., Vrabel, M., & Bevans, M. B. T.-C. J. of O. N. (2020). Family Caregiver Strain and Burden: A systematic review of evidence-based 166 interventions when caring for patients with cancer. 24(1), 31+. Jeyathevan, G., Cameron, J. I., Craven, B. C., Munce, S. E. P., & Jaglal, S. B. (2019). Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients. BMC Neurology, 19(1), 117. https://doi.org/10.1186/s12883-019-1347-x Jeyathevan, G., Catharine Craven, B., Cameron, J. I., & Jaglal, S. B. (2020). Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients. Disability and Rehabilitation, 42(13), 1844–1854. https://doi.org/10.1080/09638288.2018.1541102 Johnson, R. B., & Onwuegbuzie, A. J. (2004). Mixed Methods Research: A Research Paradigm Whose Time Has Come. Educational Researcher, 33(7), 14–26. http://www.jstor.org/stable/3700093 Johnston, M., Carey, R. N., Connell Bohlen, L. E., Johnston, D. W., Rothman, A. J., de Bruin, M., Kelly, M. P., Groarke, H., & Michie, S. (2020). Development of an online tool for linking behavior change techniques and mechanisms of action based on triangulation of findings from literature synthesis and expert consensus. Translational Behavioral Medicine, 11(5), 1049–1065. https://doi.org/10.1093/tbm/ibaa050 Jull, J., Giles, A., & Graham, I. D. (2017). Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implementation Science, 12(1), 150. https://doi.org/10.1186/s13012-017-0696-3 Kaushik, V., & Walsh, C. A. (2019). Pragmatism as a Research Paradigm and Its Implications for Social Work Research. Social Sciences, 8(9), 255. https://doi.org/10.3390/socsci8090255 Kelly, C. W. (2011). Commitment to health: a predictor of dietary change. Journal of Clinical Nursing, 20(19–20), 2830–2836. https://doi.org/https://doi.org/10.1111/j.1365-2702.2010.03654.x Khazaeipour, Z., Rezaei-Motlagh, F., Ahmadipour, E., Azarnia-Ghavam, M., Mirzababaei, A., Salimi, N., & Salehi-Nejad, A. (2017). Burden of care in primary caregivers of individuals with spinal cord injury in Iran: its association with sociodemographic factors. Spinal Cord., 31. https://doi.org/10.1038/sc.2016.195 Kirshblum, S. C., Burns, S. P., Biering-Sorensen, F., Donovan, W., Graves, D. E., Jha, A., Johansen, M., Jones, L., Krassioukov, A., Mulcahey, M. J., Schmidt-Read, M., & Waring, W. (2011). International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 34(6), 535–546. https://doi.org/10.1179/204577211X13207446293695 Kishita, N., Hammond, L., Dietrich, C., & Mioshi, E. (2018). Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of 167 carer interventions. International Psychogeriatrics, 1–18. https://doi.org/10.1017/S1041610218000947 Knowledge Translation Strategy 2004-2009. (2004). Canadian Institutes of Health Research. http://www.cihr-irsc.gc.ca/e/26574.html#defining Kok, G., Gottlieb, N. H., Peters, G.-J. Y., Mullen, P. D., Parcel, G. S., Ruiter, R. A. C., Fernández, M. E., Markham, C., & Bartholomew, L. K. (2016). A taxonomy of behaviour change methods: an intervention mapping approach. Health Psychology Review, 10(3), 297–312. Kothari, A., McCutcheon, C., & Graham, I. D. (2017). Defining Integrated Knowledge Translation and Moving Forward: A Response to Recent Commentaries. International Journal of Health Policy and Management, 6(5), 299–300. https://doi.org/10.15171/ijhpm.2017.15 Kothari, A., & Wathen, C. N. (2013). A critical second look at integrated knowledge translation. Health Policy, 109(2), 187–191. https://doi.org/10.1016/j.healthpol.2012.11.004 Kreuter, M., Sullivan, M., Dahllöf, A. G., & Siösteen, A. (1998). Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 36(4), 252–261. https://doi.org/10.1038/sj.sc.3100592 Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174. https://doi.org/10.2307/2529310 Law M., Baptiste, S., Carswell, A., McColl, M. A., Polatajko, H., Pollock, N., & McColl M.A., Polatajko H., P. N. (2019). Canadian Occupational Performance Measure (5th-revise ed.). COPM Inc. Law, M., Baptiste, S., McColl, M., Opzoomer, A., Polatajko, H., & Pollock, N. (1990). The Canadian Occupational Performance Measure: An Outcome Measure for Occupational Therapy. Canadian Journal of Occupational Therapy, 57(2), 82–87. https://doi.org/10.1177/000841749005700207 Lawrason, S. V. C., & Martin Ginis, K. A. (2021). Factors associated with leisure-time physical activity participation among individuals with spinal cord injury who ambulate. Disability and Rehabilitation, 1–8. https://doi.org/10.1080/09638288.2021.1904011 Lengnick-Hall, C. A. (1995). The patient as the pivot point for quality in health care delivery. Hospital & Health Services Administration, 40(1), 25. Levac, D., Colquhoun, H., & O’Brien, K. K. (2010). Scoping studies: advancing the methodology. Implementation Science, 5, 69. https://doi.org/10.1186/1748-5908-5-69 Levasseur, M., Richard, L., Gauvin, L., & Raymond, E. (2010). Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social 168 activities. Social Science & Medicine, 71(12), 2141–2149. https://doi.org/10.1016/j.socscimed.2010.09.041 Livneh, H., & Martz, E. (2014). Coping strategies and resources as predictors of psychosocial adaptation among people with spinal cord injury. Rehabilitation Psychology, 59(3), 329–339. https://doi.org/10.1037/a0036733 Locke, S. R., McKay, R. C., & Jung, M. E. (2019). “I’m just too busy to exercise”: Reframing the negative thoughts associated with exercise-related cognitive errors. Psychology of Sport and Exercise, 43. https://doi.org/10.1016/j.psychsport.2019.03.011 Lucke, K. T., Martinez, H., Mendez, T. B., & Arévalo-Flechas, L. C. (2013). Resolving to Go Forward: The Experience of Latino/Hispanic Family Caregivers. Qualitative Health Research, 23(2), 218–230. https://doi.org/10.1177/1049732312468062 Lutes, L. D., Cummings, D. M., Littlewood, K., Dinatale, E., & Hambidge, B. (2017). A Community Health Worker–Delivered Intervention in African American Women with Type 2 Diabetes: A 12-Month Randomized Trial. Obesity, 25(8), 1329–1335. https://doi.org/10.1002/oby.21883 Lynch, J., & Cahalan, R. (2017). The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Spinal Cord, 55(11), 964–978. https://doi.org/10.1038/sc.2017.56 Manns, P. J., & May, L. A. (2007). Perceptions of issues associated with the maintenance and improvement of long-term health in people with SCI. Spinal Cord, 45(6), 411–419. https://doi.org/10.1038/sj.sc.3101973 Manuel, D. G., Garner, R., Finès, P., Bancej, C., Flanagan, W., Tu, K., Reimer, K., Chambers, L. W., & Bernier, J. (2016). Alzheimer’s and other dementias in Canada, 2011 to 2031: a microsimulation Population Health Modeling (POHEM) study of projected prevalence, health burden, health services, and caregiving use. Population Health Metrics, 14(1), 37. https://doi.org/10.1186/s12963-016-0107-z Marques, M., Carey, R., Norris, E., Evan, F., Finnerty, A., Hastings, J., Jenkins, E., Johnston, M., West, R., & Michie, S. (2021). Delivering Behaviour Change Interventions: Development of a Mode of Delivery Ontology [version 2; peer review: 2 approved]. Wellcome Open Research, 5(125). https://doi.org/10.12688/wellcomeopenres.15906.2 Martin Ginis, K. A., Evans, M. B., Mortenson, W. Ben, & Noreau, L. (2017). Broadening the Conceptualization of Participation of Persons With Physical Disabilities: A Configurative Review and Recommendations. Archives of Physical Medicine and Rehabilitation, 98(2), 395–402. https://doi.org/10.1016/j.apmr.2016.04.017 Martin Ginis, K. A., & Hicks, A. L. (2005). Exercise Research Issues in the Spinal Cord Injured Population. Exercise Sport Sciences Reviews, 33(1), 49–53. https://doi.org/0091- 169 6331/3301/49 –53 Mausbach, B. T., Chattillion, E., Roepke, S. K., Ziegler, M. G., Milic, M., von Känel, R., Dimsdale, J. E., Mills, P. J., Patterson, T. L., Allison, M. A., Ancoli-Israel, S., & Grant, I. (2012). A Longitudinal Analysis of the Relations Among Stress, Depressive Symptoms, Leisure Satisfaction, and Endothelial Function in Caregivers. Health Psychology, 31(4), 433–440. https://doi.org/10.1037/a0027783 Mausbach, B. T., Patterson, T. L., & Grant, I. (2008). Is depression in Alzheimer’s caregivers really due to activity restriction? A preliminary mediational test of the Activity Restriction Model. Journal of Behavior Therapy and Experimental Psychiatry, 39(4), 459–466. https://doi.org/https://doi.org/10.1016/j.jbtep.2007.12.001 McGlynn, E. A., Asch, S. M., Adams, J., Keesey, J., Hicks, J., DeCristofaro, A., & Kerr, E. A. (2003). The Quality of Health Care Delivered to Adults in the United States. The New England Journal of Medicine, 348(26), 2635–2645. https://doi.org/10.1056/NEJMsa022615 McKay, R. C., Wuerstl, K. R., Casemore, S., Clarke, T. Y., McBride, C. B., & Gainforth, H. L. (2020). Guidance for behavioural interventions aiming to support family support providers of people with spinal cord injury: A scoping review. Social Science & Medicine, 246. https://doi.org/10.1016/j.socscimed.2019.112456 McKinley, W. O., Jackson, A. B., Cardenas, D. D., & De Vivo, M. J. (1999). Long-term medical complications after traumatic spinal cord injury: A regional model systems analysis. Archives of Physical Medicine and Rehabilitation, 80(11), 1402–1410. https://doi.org/S0003-9993(99)90251-4 Meade, M. A., Taylor, A., Kreutzer, J. S., Marwitz, J. H., & Thomas, V. (2004). A preliminary study of acute family needs after spinal cord injury: analysis and implications. Rehabilitation Psychology, 49(2), 150–155. https://doi.org/10.1037/0090-5550.49.2.150 Michie, S., Atkins, L., & West, R. (2014). The Behaviour Change Wheel: A Guide to Designing Interventions. Silverback Publishing. Michie, S., Carey, R. N., Johnston, M., Rothman, A. J., de Bruin, M., Kelly, M. P., & Connell, L. E. (2017). From Theory-Inspired to Theory-Based Interventions: A Protocol for Developing and Testing a Methodology for Linking Behaviour Change Techniques to Theoretical Mechanisms of Action. Annals of Behavioral Medicine, 52(6), 501–512. https://doi.org/10.1007/s12160-016-9816-6 Michie, S., Fixsen, D., Grimshaw, J. M., & Eccles, M. P. (2009). Specifying and reporting complex behaviour change interventions: the need for a scientific method. Implementation Science, 4(1), 40. https://doi.org/10.1186/1748-5908-4-40 Michie, S., Johnston, M., Abraham, C., Lawton, R., Parker, D., & Walker, A. (2005). Making psychological theory useful for implementing evidence based practice: a consensus 170 approach. Quality and Safety in Health Care, 14(1), 26–33. https://doi.org/10.1136/qshc.2004.011155 Michie, S., & Prestwich, A. (2010). Are interventions theory-based? Development of a theory coding scheme. In Health Psychology (Vol. 29, Issue 1, pp. 1–8). https://doi.org/10.1037/a0016939 Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J., & Wood, C. E. (2013). The Behavior Change Technique Taxonomy (v1) of 93 Hierarchically Clustered Techniques: Building an International Consensus for the Reporting of Behavior Change Interventions. Annals of Behavioral Medicine, 46(1), 81–95. https://doi.org/10.1007/s12160-013-9486-6 Michie, S., van Stralen, M. M., & West, R. (2011). The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implementation SScience, 6(1), 42. https://doi.org/10.1186/1748-5908-6-42 Miller, W. R., Moyers, T. B., Ernst, D., & Amrhein, P. (2003). Manual for the motivational interviewing skill code (MISC). Unpublished Manuscript. Albuquerque: Center on Alcoholism, Substance Abuse and Addictions, University of New Mexico. Miller, W. R., & Rollnick, S. (2012). Motivational Interviewing: Helping People Change (3rd ed.). Guilford Publications. Moher, D., Liberati, A., & Tetzlaff, J. (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA Statement. PLoS Med, 6. https://doi.org/10.1371/journal.pmed.1000097 LB - Moher2009 Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2010). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. International Journal of Surgery, 8(5), 336–341. https://doi.org/10.1016/j.ijsu.2010.02.007 Möhler, R., Köpke, S., & Meyer, G. (2015). Criteria for Reporting the Development and Evaluation of Complex Interventions in healthcare: revised guideline (CReDECI 2). Trials, 16, 204. https://doi.org/10.1186/s13063-015-0709-y Moore, G. F., Audrey, S., Barker, M., Bond, L., Bonell, C., Hardeman, W., Moore, L., O’Cathain, A., Tinati, T., Wight, D., & Baird, J. (2015). Process evaluation of complex interventions: Medical Research Council guidance. British Medical Journal, 350, h1258. https://doi.org/10.1136/bmj.h1258 Morgan, D. L. (2014). Pragmatism as a Paradigm for Social Research. In Qualitative inquiry (Vol. 20, Issue 8, pp. 1045–1053). SAGE Publications. https://doi.org/10.1177/1077800413513733 Morris, Z. S., Wooding, S., & Grant, J. (2011). The answer is 17 years, what is the question: understanding time lags in translational research. Journal of the Royal Society of Medicine, 171 104(12), 510–520. https://doi.org/10.1258/jrsm.2011.110180 Mourão, C. M. L., Fernandes, A. F. C., Moreira, D. P., & Martins, M. C. (2017). Motivational interviewing in the social support of caregivers of patients with breast cancer in chemotherapy. Revista da Escola de Enfermagem da U S P, 51, e03268–e03268. https://doi.org/10.1590/S1980-220X2017001803268 Nezu, A. M. (2004). Problem solving and behavior therapy revisited. Behavior Therapy, 35(1), 1–33. https://doi.org/https://doi.org/10.1016/S0005-7894(04)80002-9 Nguyen, T., Graham, I. D., Mrklas, K. J., Bowen, S., Cargo, M., Estabrooks, C. A., Kothari, A., Lavis, J., Macaulay, A. C., MacLeod, M., Phipps, D., Ramsden, V. R., Renfrew, M. J., Salsberg, J., & Wallerstein, N. (2020). How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field. Health Research Policy and Systems, 18(1), 35. https://doi.org/10.1186/s12961-020-0539-6 Nieboer, A. P., Schulz, R., Matthews, K. A., Scheier, M. F., Ormel, J., & Lindenberg, S. M. (1998). Spousal caregivers’ activity restriction and depression: A model for changes over time. Social Science & Medicine, 47(9), 1361–1371. https://doi.org/10.1016/S0277-9536(98)00214-7 Noonan, V. K., Fingas, M., Farry, A., Baxter, D., Singh, A., Fehlings, M. G., & Dvorak, M. F. (2012). Incidence and Prevalence of Spinal Cord Injury in Canada: A National Perspective. Neuroepidemiology, 38(4), 219–226. https://doi.org/10.1159/000336014 Noonan, V. K., Wolfe, D. L., Thorogood, N. P., Park, S. E., Hsieh, J. T., Eng, J. J., & The SCIRE Research Team. (2014). Knowledge translation and implementation in spinal cord injury: a systematic review. Spinal Cord, 52(8), 578–587. https://doi.org/10.1038/sc.2014.62 Noreau, L., Fougeyrollas, P., Post, M., & Asano, M. (2005). Participation after spinal cord injury: The evolution of conceptualization and measurement. Journal of Neurologic Physical Therapy, 29(3), 147–156. https://doi.org/10.1097/01.NPT.0000282247.15911.dc Nowell, L. (2015). Pragmatism and integrated knowledge translation: exploring the compatabilities and tensions. Nursing Open, 2(3), 141–148. https://doi.org/10.1002/nop2.30 O’Cathain, A., Croot, L., Sworn, K., Duncan, E., Rousseau, N., Turner, K., Yardley, L., & Hoddinott, P. (2019). Taxonomy of approaches to developing interventions to improve health: a systematic methods overview. Pilot and Feasibility Studies, 5(1), 41. https://doi.org/10.1186/s40814-019-0425-6 Oberst, M. T. (1990). Caregiving burden scale. Unpublished Manuscript, University of Wisconsin-Madison. Ogden, J. (2016). Celebrating variability and a call to limit systematisation: the example of the 172 Behaviour Change Technique Taxonomy and the Behaviour Change Wheel. Health Psychology Review, 10(3), 245–250. https://doi.org/10.1080/17437199.2016.1190291 Oliver, K., Kothari, A., & Mays, N. (2019). The dark side of coproduction: do the costs outweigh the benefits for health research? Health Research Policy and Systems, 17(1), 33. https://doi.org/10.1186/s12961-019-0432-3 Omiya, T., Kutsumi, M., & Fukui, S. (2021). Work, Leisure Time Activities, and Mental Health among Family Caregivers of the Elder People in Japan. Healthcare, 9(2), 129. https://doi.org/10.3390/healthcare9020129 Onwuegbuzie, A. J., & Collins, K. M. T. (2007). A typology of mixed methods sampling designs in social science research. The Qualitative Report, 12(2), 281–316. Oussedik, E., Foy, C. G., Masicampo, E. J., Kammrath, L. K., Anderson, R. E., & Feldman, S. R. (2017). Accountability: a missing construct in models of adherence behavior and in clinical practice. Patient Preference and Adherence, 11, 1285–1294. https://doi.org/10.2147/PPA.S135895 Outcome. (n.d.). Merriam Webster Online. https://www.merriam-webster.com/dictionary/outcome Painter, J. E., Borba, C. P. C., Hynes, M., Mays, D., & Glanz, K. (2008). The Use of Theory in Health Behavior Research from 2000 to 2005: A Systematic Review. Annals of Behavioral Medicine, 35(3), 358–362. https://doi.org/10.1007/s12160-008-9042-y Palinkas, L. A., Horwitz, S. M., Green, C. A., Wisdom, J. P., Duan, N., & Hoagwood, K. (2015). Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Administration and Policy in Mental Health and Mental Health Services Research, 42(5), 533–544. https://doi.org/10.1007/s10488-013-0528-y Panzeri, A., Rossi Ferrario, S., & Vidotto, G. (2019). Interventions for Psychological Health of Stroke Caregivers: A Systematic Review. Frontiers in Psychology, 10, 2045. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the Stress Process: An Overview of Concepts and Their Measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583 Pendergrass, A., Hautzinger, M., Elliott, T. R., Schilling, O., Becker, C., & Pfeiffer, K. (2017). Family caregiver adjustment and stroke survivor impairment: A path analytic model. Rehabilitation Psychology, 62(2), 81–88. https://doi.org/10.1037/rep0000118 Peterson, K., Hahn, H., Lee, A. J., Madison, C. A., & Atri, A. (2016). In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers’ education needs, barriers, and preferences. BMC Geriatrics, 16(1), 164. https://doi.org/10.1186/s12877-016-0338-7 173 Petty, L., & Trussell, D. E. (2021). Leisure self-care, health and well-being in women’s lives. Annals of Leisure Research, 24(3), 328–339. https://doi.org/10.1080/11745398.2019.1652661 Pham, M. T., Rajić, A., Greig, J. D., Sargeant, J. M., Papadopoulos, A., & McEwen, S. A. (2014). A scoping review of scoping reviews: advancing the approach and enhancing the consistency. Research Synthesis Methods, 5(4), 371–385. https://doi.org/10.1002/jrsm.1123 Pinquart, M., & Sörensen, S. (2005). Ethnic Differences in Stressors, Resources, and Psychological Outcomes of Family Caregiving: A Meta-Analysis. The Gerontologist, 45(1), 90–106. https://doi.org/10.1093/geront/45.1.90 Pinquart, M., & Sörensen, S. (2007). Correlates of Physical Health of Informal Caregivers: A Meta-Analysis. The Journals of Gerontology: Series B, 62(2), 126–137. https://doi.org/10.1093/geronb/62.2.P126 Ploeg, J., Markle-Reid, M., Valaitis, R., McAiney, C., Duggleby, W., Bartholomew, A., & Sherifali, D. (2017). Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review. Journal of Medical Internet Research, 19(7), e263. https://doi.org/10.2196/jmir.7564 Pomeranz, J., Shaw, L. R., Sawyer, H. W., & Velozo, C. A. (2006). Consensus among life care planners regarding activities to consider when recommending personal attendant care services for individuals with spinal cord injury: A Delphi study. Journal of Life Care Planning, 5(1), 7–22. Post, M. W. M., Bloemen, J., & de Witte, L. P. (2005). Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 43(5), 311–319. https://doi.org/10.1038/sj.sc.3101704 Post, M. W. M., & van Leeuwen, C. M. C. (2012). Psychosocial issues in spinal cord injury: a review. Spinal Cord, 50(5), 382–389. https://doi.org/10.1038/sc.2011.182 Prestwich, A., Sniehotta, F. F., Whittington, C., Dombrowski, S. U., Rogers, L., & Michie, S. (2014). Does Theory Influence the Effectiveness of Health Behavior Interventions? Meta-Analysis. In A. E. Kazak (Ed.), Health Psychology (Vol. 33, Issue 5, pp. 465–474). American Psychological Association. https://doi.org/10.1037/a0032853 QSR International Pty, L. (2016). NVivo qualitative data analysis software (Version 11). Radloff, L. S. (1977). The CES-D Scale:A Self-Report Depression Scale for Research in the General Population. Applied Psychological Measurement, 1(3), 385–401. https://doi.org/10.1177/014662167700100306 Rick Hansen Institute. (2018). Facts about SCI. https://doi.org/https://rickhanseninstitute.org/resource/sci/what-is-sci 174 Rivera, P. A., Shewchuk, R., & Elliott, T. R. (2003). Project FOCUS: Using videophones to provide problem-solving training to family caregivers of persons with spinal cord injuries. Topics in Spinal Cord Injury Rehabilitation, 9(1), 53–62. https://doi.org/http://dx.doi.org/10.1310/G82F-BR2R-T69L-3QX8 Rocchi, M. A., Zelaya, W., & Sweet, S. N. (2018). Peer mentorship for adults with spinal cord injury: a static group comparison between mentees and non-mentees’ reported coping strategies. Spinal Cord, 56(11), 1102–1109. https://doi.org/10.1038/s41393-018-0197-5 Rodakowski, J., Skidmore, E. R., Rogers, J. C., & Schulz, R. (2012). Role of Social Support in Predicting Caregiver Burden. Archives of Physical Medicine and Rehabilitation, 93(12), 2229–2236. https://doi.org/10.1016/j.apmr.2012.07.004 Rodakowski, J., Skidmore, E. R., Rogers, J. C., & Schulz, R. (2013). Does social support impact depression in caregivers of adults ageing with spinal cord injuries? Clinical Rehabilitation, 27(6), 565–575. https://doi.org/10.1177/0269215512464503 Scholten, E. W. M., Kieftenbelt, A., Hillebregt, C. F., de Groot, S., Ketelaar, M., Visser-Meily, J. M. A., & Post, M. W. M. (2018). Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation. Spinal Cord, 56(5), 436–446. https://doi.org/10.1038/s41393-017-0047-x Schulz, R., Czaja, S. J., Lustig, A., Zdaniuk, B., Martire, L. M., & Perdomo, D. (2009). Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial. Rehabilitation Psychology, 54(1), 1–15. https://doi.org/10.1037/a0014932 Schulz, R., Czaja, S. J., McKay, J. R., Ory, M. G., & Belle, S. H. (2010). Intervention taxonomy (ITAX): describing essential features of interventions. American Journal of Health Behaviour, 34(6), 811–821. https://doi.org/10.5993/AJHB.34.6.15 Schulz, R., & Williamson, G. M. (1993). 5 Psychosocial and Behavioral Dimensions of Physical Frailty. Journal of Gerontology, 48, 39–43. https://doi.org/10.1093/geronj/48.Special_Issue.39 Schut, H. A., & Stam, H. J. (1994). Goals in rehabilitation teamwork. Disability and Rehabilitation, 16(4), 223–226. https://doi.org/10.3109/09638289409166616 Schüz, B., Czerniawski, A., Davie, N., Miller, L., Quinn, M. G., King, C., Carr, A., Elliott, K.-E. J., Robinson, A., & Scott, J. L. (2015). Leisure Time Activities and Mental Health in Informal Dementia Caregivers. Applied Psychology: Health and Well-Being, 7(2), 230–248. https://doi.org/https://doi.org/10.1111/aphw.12046 Seppälä, T., Hankonen, N., Korkiakangas, E., Ruusuvuori, J., & Laitinen, J. (2017). National policies for the promotion of physical activity and healthy nutrition in the workplace context: a behaviour change wheel guided content analysis of policy papers in Finland. BMC Public Health, 18(1), 87–89. https://doi.org/10.1186/s12889-017-4574-3 175 Sezer, N., Akkuş, S., & Uğurlu, F. G. (2015). Chronic complications of spinal cord injury. World Journal of Orthopedics, 6(1), 24–33. https://doi.org/10.5312/wjo.v6.i1.24 Shaw, R. B., Giroux, E. E., Gainforth, H. L., McBride, C. B., Vierimaa, M., & Ginis, K. A. M. (2021). Investigating the influence of interaction modality on the communication patterns of spinal cord injury peer mentors. Patient Education and Counseling. https://doi.org/https://doi.org/10.1016/j.pec.2021.09.008 Shepherd-Banigan, M. E., Shapiro, A., McDuffie, J. R., Brancu, M., Sperber, N. R., Van Houtven, C. H., Kosinski, A. S., Mehta, N. N., Nagi, A., & Williams, J. W. (2018). Interventions That Support or Involve Caregivers or Families of Patients with Traumatic Injury: a Systematic Review. Journal of General Internal Medicine, 33(7), 1177–1186. https://doi.org/10.1007/s11606-018-4417-7 Sibalija, J., Savundranayagam, M. Y., Orange, J. B., & Kloseck, M. (2018). Social support, social participation, & depression among caregivers and non-caregivers in Canada: a population health perspective. Aging & Mental Health, 1–9. https://doi.org/10.1080/13607863.2018.1544223 Sibbald, S. L., Tetroe, J., & Graham, I. D. (2014). Research funder required research partnerships: a qualitative inquiry. Implementation Science, 9(1), 176. https://doi.org/10.1186/s13012-014-0176-y Sidani, S., Fox, M., & El-Masri, M. M. V. O.-34. (2020). Guidance for the Reporting of an Intervention’s Theory. Research and Theory for Nursing Practice, 34(1), 35–48. https://doi.org/10.1891/1541-6577.34.1.35 Simpson, G., & Jones, K. (2012). How important is resilience among family members supporting relatives with traumatic brain injury or spinal cord injury? Clinical Rehabilitation, 27(4), 367–377. https://doi.org/10.1177/0269215512457961 Sinha, M. (2013). Portrait of caregivers, 2012. Statistics Canada. http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.htm Smith, B., & McGannon, K. (2018). Developing rigor in qualitative research: problems and opportunities within sport and exercise psychology. International Review of Sport and Exercise Psychology, 11(1), 101–121. https://doi.org/10.1080/1750984X.2017.1317357 Smith, E. M., Boucher, N., & Miller, W. C. (2016). Caregiving services in spinal cord injury: a systematic review of the literature. Spinal Cord, 54(8), 562–569. https://doi.org/10.1038/sc.2016.8 Sörensen, S., & Pinquart, M. (2005). Racial and ethnic differences in the relationship of caregiving stressors, resources, and sociodemographic variables to caregiver depression and perceived physical health. Aging & Mental Health, 9(5), 482–495. Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How Effective Are Interventions With 176 Caregivers? An Updated Meta-Analysis. The Gerontologist, 42(3), 356–372. https://doi.org/10.1093/geront/42.3.356 Sparkes, A. C. (2014). Qualitative research methods in sport, exercise and health: from process to product. Routledge. https://doi.org/10.4324/9780203852187 Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., Entwistle, A., Littlejohns, P., Morris, C., Suleman, R., Thomas, V., & Tysall, C. (2017). GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ, 358, j3453. https://doi.org/10.1136/bmj.j3453 Starfield, B. (1998). Quality-of-Care Research: Internal Elegance and External Relevance. JAMA, 280(11), 1006–1008. https://doi.org/10.1001/jama.280.11.1006 Starkweather, A. (2011). Caregiver and Family Functioning of Older Adults With Spinal Cord Injury: A Critical Review of the Literature Spanning the Past Decade. Journal of Trauma Nursing, 18(2). https://doi.org/10.1097/JTN.0b013e3181ff25c0 Statistics, A. B. of. (2016). Disability, Ageing and Carers, Australia: Summary of Findings. Australian Bureau of Statistics. http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0 Statistics Canada. (2020). Caregivers in Canada, 2018. https://www150.statcan.gc.ca/n1/daily-quotidien/200108/dq200108a-eng.htm Stevens, A. B., Coon, D., Wisniewski, S., Vance, D., Argüelles, S., Belle, S., Mendelsohn, A., Ory, M., & Haley, W. (2004). Measurement of leisure time satisfaction in family caregivers. Aging & Mental Health, 8, 450–459. https://doi.org/10.1080/13607860410001709737 Stewart, A. L., Hays, R. D., & Ware, J. E. (1988). The MOS Short-Form General Health Survey: Reliability and Validity in a Patient Population. Medical Care, 26(7), 724–735. http://www.jstor.org/stable/3765494 Stoffel, J. T., Van der Aa, F., Wittmann, D., Yande, S., & Elliott, S. (2018). Fertility and sexuality in the spinal cord injury patient. World Journal of Urology, 36(10), 1577–1585. https://doi.org/10.1007/s00345-018-2347-y Tetroe, J. M., Graham, I., Foy, R., Robinson, N., Eccles, M., Wensing, M., Durieux, P., Légaré, F., Nielson, C. P., Adily, A., Ward, J. E., Porter, C., Shea, B., & Grimshaw, J. M. (2008). Health Research Funding Agencies’ Support and Promotion of Knowledge Translation: An International Study. The Milbank Quarterly, 86(1), 125–155. https://doi.org/https://doi.org/10.1111/j.1468-0009.2007.00515.x Thomas, D. R. (2006). A General Inductive Approach for Analyzing Qualitative Evaluation Data. American Journal of Evaluation, 27(2), 237–246. https://doi.org/10.1177/1098214005283748 177 Toomey, E., Hardeman, W., Hankonen, N., Byrne, M., McSharry, J., Matvienko-Sikar, K., & Lorencatto, F. (2020). Focusing on fidelity: narrative review and recommendations for improving intervention fidelity within trials of health behaviour change interventions. Health Psychology and Behavioral Medicine, 8(1), 132–151. https://doi.org/10.1080/21642850.2020.1738935 Tracy, S. J. (2010). Qualitative Quality: Eight “Big-Tent” Criteria for Excellent Qualitative Research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121 Tramonti, F., Gerini, A., & Stampacchia, G. (2015). Relationship quality and perceived social support in persons with spinal cord injury. Spinal Cord, 53(2), 120–124. https://doi.org/10.1038/sc.2014.229 Turcotte, M. (2013). Family caregiving: What are the consequences? Statistics Canada. https://doi.org/http://www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.pdf Valente, T. W. (2010). Social networks and health: Models, methods, and applications (Vol. 1). Oxford University Press New York. Vara-García, C., Romero-Moreno, R., Barrera-Caballero, S., Pedroso-Chaparro, M. D. S., Cabrera, I., Márquez-González, M., Olazarán, J., & Losada, A. (2020). Personal values profiles in dementia family caregivers: their association with ambivalent feelings and anxious and depressive symptoms. Aging & Mental Health, 1–9. https://doi.org/10.1080/13607863.2020.1821169 Vernooij-Dassen, M., Draskovic, I., McCleery, J., & Downs, M. (2011). Cognitive reframing for carers of people with dementia. Cochrane Database of Systematic Reviews, 11. https://doi.org/10.1002/14651858.CD005318.pub2 Waligora, K. J., Bahouth, M. N., & Han, H.-R. (2018). The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review. The Gerontologist, gny076–gny076. https://doi.org/10.1093/geront/gny076 Ware, J. E. (1993). SF-36 health survey: manual and interpretation guide. Health Institute. Weatherson, K. A., McKay, R., Gainforth, H. L., & Jung, M. E. (2017). Barriers and facilitators to the implementation of a school-based physical activity policy in Canada: Application of the theoretical domains framework. BMC Public Health, 17(1). https://doi.org/10.1186/s12889-017-4846-y Weiner, B. J., Lewis, C. C., Stanick, C., Powell, B. J., Dorsey, C. N., Clary, A. S., Boynton, M. H., & Halko, H. (2017). Psychometric assessment of three newly developed implementation outcome measures. Implementation Science, 12(1), 108. https://doi.org/10.1186/s13012-017-0635-3 Weitzenkamp, D. A., Gerhart, K. A., Charlifue, S. W., Whiteneck, G. G., & Savic, G. (1997). Spouses of spinal cord injury survivors: the added impact of caregiving. Archives of 178 Physical Medicine and Rehabilitation, 78(8), 822–827. https://doi.org/10.1016/S0003-9993(97)90194-5 Williamson, G. M., Shaffer, D. R., & Schulz, R. (1998). Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. In Health Psychology (Vol. 17, Issue 2, pp. 152–162). American Psychological Association. https://doi.org/10.1037/0278-6133.17.2.152 Willmott, T., & Rundle-Thiele, S. (2021). Are we speaking the same language? Call for action to improve theory application and reporting in behaviour change research. BMC Public Health, 21(1), 479. https://doi.org/10.1186/s12889-021-10541-1 Woodill, G., & Willi, V. (2006). Independent living and participation in research: A critical analysis. CILT. Zanini, C., Fiordelli, M., Amann, J., Brach, M., Gemperli, A., & Rubinelli, S. (2020). Coping strategies of family caregivers in spinal cord injury: a qualitative study. Disability and Rehabilitation, 1–10. https://doi.org/10.1080/09638288.2020.1764638 Zarit, S. H. (2018). Past is prologue: how to advance caregiver interventions. Aging & Mental Health, 22(6), 717–722. https://doi.org/10.1080/13607863.2017.1328482 Zarit, S. H., & Femia, E. (2008). Behavioral and Psychosocial Interventions for Family Caregivers. The American Journal of Nursing, 108(9 Suppl), 47–53. https://doi.org/10.1097/01.NAJ.0000336415.60495.34 Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649 Zimmerman, M., & Coryell, W. (1987). The Inventory to Diagnose Depression (IDD): A self-report scale to diagnose major depressive disorder. Journal of Consulting and Clinical Psychology, 55(1), 55. 179 Appendices Supplementary Materials, Methods and Results for Study 1 A.1 Description of Methods Table 1 Description of Methods Stage 1: Understand the behaviour Extracted Component Definition Method Relevant Articles a. Behaviours “Anything a person does in response to internal or external events. Actions may be overt and directly measurable, or covert and indirectly measurable; behaviours are physical events that occur in the body and are controlled by the brain.” (Michie et al., 2014, 234) Behaviour descriptions were extracted in their original format. A thematic analysis was conducted to identify themes across extracted behaviours (Braun & Clarke, 2006). For qualitative articles, descriptive quotes were selected for each theme. Behavioural measures were extracted from quantitative articles. These steps were repeated for the extraction and analysis of outcomes. Quantitative Qualitative Intervention b. Barriers and Facilitators Any factor, view, characteristic or belief that impedes or promotes a behaviour. [Adapted from Weatherson et al. (2017)] For qualitative articles, barriers and facilitators were extracted in their original format unless summarized or synthesized by the author. Two researchers (RM, KW) independently coded extracted barriers and facilitators using the Theoretical Domains Framework (TDF). A TDF coding manual was iteratively developed to allow coders to tailor coding practices to the context of this review. The coding manual and TDF domain definitions can be found in the Supplementary Materials. A thematic analysis was conducted across individual barriers/facilitators within each TDF domain. Examples were selected for each theme. Qualitative Intervention 180 Stage 2: Identify intervention content and implementation options Extracted Component Definition Method Relevant Articles a. Behaviour Change Theory “[A representation of] the accumulated knowledge of the mechanisms of action (mediators) and moderators of change as well as the a priori assumptions about what human behaviour is, and what the influences on it are” (Davis et al., 2015, 324) Question one of the Theory Coding Scheme developed by Michie and Prestwich (2010) was used to determine the use of theory in the development of intervention studies. Intervention b. Behaviour Change Techniques (BCTs) ‘Observable, replicable, and irreducible component of an intervention designed to alter or redirect causal processes that regulate behaviour; that is, a technique is proposed to be an “active ingredient” (Michie et al., 2013, 82) BCT Taxonomy version 1 (BCTTv1) was used to identify and code BCTs used in interventions (Michie et al., 2013). BCTs were only coded if mentioned explicitly in the methodology of the intervention. Each BCT was coded only once per intervention. Analysis of BCTs was descriptive and based on the presence or absence within an intervention. Intervention c. Modes of Delivery The way in which an intervention is delivered (Carey, 2016) Two researchers (RM, KW) independently coded modes of delivery used in interventions using the Mode of Delivery of Behaviour Change Interventions Taxonomy version 0 (MoDTv0) (Carey, 2016). Intervention 181 Stage 3: Evaluation Extracted Component Definition Method Relevant Articles a. Outcomes and Measurement Tools Quantitative/Intervention Definition A planned, a priori assessment described in the study methods that is used to determine a change in status as a result of the support providing role or intervention, can be measured or assessed as a component of the study and is not something of futuristic benefit [Adapted from University of Waterloo Research Ethics – Definition of Outcome ("Research Ethics: Definition of a health outcome," n.d.)] Qualitative Definition: Identifiable benefit/harm to, or positive/negative influence on someone who provides support. [Adapted from Higher Education Funding Council for England: Research Excellence Framework 2014. ("Higher Education Funding Council for England: Research Excellence Framework 2014.," 2014)] See Stage: 1a. Quantitative Qualitative Intervention 182 A.2 Characteristics of Included Studies Table 2 Characteristics of included studies Author (year) Country Methods Sample Size (n =) Support Provider-Recipient Relationship (n =) Support Provider Age mean years ± SD (range) Paralysis Type (n =) Completeness of Injury (n =) Data Collection Method Akhtar et al. (2012) United Kingdom QUAL 8 Sister (4) Brother (4) 13.5±3.5 (7-18) N/A N/A Semi-Structured Interviews Angel and Buus (2011) Denmark QUAL 7 Partner (7) N/A Tetraplegia (5) Paraplegia (2) Complete (2) Incomplete (5) Interviews Arango-Lasprilla et al. (2010) Columbia QUANT 37 Parent (18) Spouse/Partner (11) Sibling (6) Other - Family (2) 44.9±16.4 Tetraplegia (6) Paraplegia (21) N/A Survey Beauregard and Noreau (2010) Canada QUAL 24 Spouse/Partner (24) 47.5 (29-75) Tetraplegia (11) Paraplegia (13) Complete (15) Incomplete (9) Semi-Structured Interviews Blanes et al. (2007) Brazil QUAL 60 Wife (16) Sister (14) Mother (11) Other - Family (19) 35.8±12.91 (18-60) Paraplegia (60) N/A Semi-Structured Interviews and Survey 183 Boschen and Gargaro (2009) Canada MIXED (QUANT) 100* Spouse (36) Parent (32) Sibling (13) Friend (9) Attendant (6) Rehab Professional (4) 39.3±12.26 (18-76) Tetraplegia (68) Paraplegia (32) Complete (48) Complete (48) Unknown (3) Focus Groups and Survey Boschen and Gargaro (2009) Canada MIXED (QUAL) 41* Spouse (15) Parent (19) Sibling (2) Friend (2) Attendant (1) Rehab Professional (1) N/A Tetraplegia (31) Paraplegia (10) Complete (19) Complete (21) Unknown (1) Focus Group Boschen et al. (2005a) Canada QUANT 100* Spouse (36) Parent (32) Sibling (13) Friend (7) Attendant (6) Rehab Professional (4) Other (2) 39.3±12.26 (18-76) Tetraplegia (68) Paraplegia (32) Complete (48) Complete (48) Unknown (3) Survey Boschen et al. (2005b) Canada MIXED (QUANT) 100* QUANT (100) QUAL (41) Spouse (36) Parent (32) Sibling (13) Friend/Ex-Spouse (9) Attendant (6) Rehabilitation Professional (4) 39.3±12.26 (18-76) Tetraplegia (68) Paraplegia (32) Complete (48) Complete (48) Unknown (3) Interview Completed Survey 184 Boschen et al. (2005b) Canada MIXED (QUAL) 41* Spouse (15) Parent (19) Sibling (2) Friend (2) Attendant (1) Rehab Professional (1) N/A Tetraplegia (31) Paraplegia (10) Complete (19) Complete (21) Unknown (1) Focus Group Burns et al. (2014) Canada QUAL 10 Compensated Support Provider (7) Wife (3) 49.3±12.10 (26-67) N/A N/A Interviews Chan (2000a) China QUAL 40* Wife (35) Husband (5) 41.2±10.7 Tetraplegia (28) Paraplegia (38) *66 participants with SCI were recruited for this study Complete (37) Incomplete (29) Semi-Structured Interviews Chan (2000b) China QUANT 40* Wife (35) Husband (5) 41.2±10.7 Tetraplegia (28) Paraplegia (38) *66 participants with SCI were recruited for this study Complete (37) Incomplete (29) Survey and Semi-Structured Interviews 185 Chan et al. (2000) China QUANT 40* Wife (35) Husband (5) 41.2±10.7 Tetraplegia (28) Paraplegia (38) *66 participants with SCI were recruited for this study Complete (37) Incomplete (29) Survey and Semi-Structured Interviews Charlifue et al. (2016) United States QUAL 73 Spouse (39) Parent (27) Other (7) 52.5 Tetraplegia (44) Paraplegia (29) N/A Focus Groups Chen and Boore (2009) Taiwan QUAL 15 Mother (8) Wife (3) Husband (2) Sister (1) Daughter (1) N/A N/A Complete (6) Incomplete (2) Semi-Structured Interviews, Observation of Group Discussion and Religious Event Coleman et al. (2015) Columbia QUANT 40* N/A 44.3±16.4 N/A N/A Survey Conti et al. (2016) Italy QUAL 11 Wife (6) Husband (3) Mother (1) Brother (1) Other – Niece (1) 57.4±15.8 (28-80) N/A Complete (5) Incomplete (6) Semi-Structured Interviews 186 de Azevedo and de Gouveia Santos (2006) Brazil QUAL 8 Wife (6) Husband (1) Sister (1) 31 (21-46) N/A N/A Open Interviews Delargy et al. (1988) Great Britain QUANT 33 Wife (16) Mother (14) Husband (3) 47 (23-65) Tetraplegia (33) N/A Survey Dickson et al. (2011) Scotland QUAL 11* Spouse (11) 51.4 (34-66) N/A N/A Semi-Structured Interviews Dickson et al. (2010) Scotland QUAL 11* Spouse (11) 51.4 (34-66) N/A N/A Interviews Doyle et al. (2016) Columbia QUANT 30 Parent (22) Grandmother (4) Other (2) Aunt (1) Uncle (1) 41.3±11 N/A N/A Survey Dreer et al. (2007) United States QUANT 121 Spouse (46) Parent (45) Other (11) Sister (10) Child (9) 45.7±12.9 (20-85) Tetraplegia (65) Paraplegia (49) Other (7) Complete (53) Incomplete (68) Survey Ebrahimzadeh et al. (2013) Iran QUANT 72* Wife (72) 44.7±6.55 (31-66) Tetraplegia (8) Paraplegia (64) Complete (36) Incomplete (36) Survey Ebrahimzadeh et al. (2014) Iran QUANT 72* Wife (72) 44.7±6.55 (31-66) Tetraplegia (8) Paraplegia (64) Complete (36) Incomplete (36) Survey 187 Ellenbogen et al. (2006) United States QUAL 9 Mother (5) Father (1) Partner/Spouse (3) N/A Tetraplegia (4) Paraplegia (5) N/A Semi-Structured Interviews and Focus Group Elliott and Berry (2009) United States INTER 60* Parent (26) Spouse (22) Sister (5) Child (4) Brother (2) Other (1) 42.2±9.1 Tetraplegia (29) Paraplegia (28) Other (3) Complete (31) Incomplete (29) Intervention Elliott and Shewchuk (2003) United States QUANT 60* Parent (26) Spouse (22) Other (12) 42.2±9.1 Tetraplegia (29) Paraplegia (28) Other (3) Complete (31) Incomplete (29) Survey Elliott et al. (2008) United States INTER 61 Spouse (24) Parent (19) Other (6) Daughter (5) Grandparent (4) Sibling (3) 48.6±14.9 Tetraplegia (36) Paraplegia (25) Complete (22) Incomplete (39) Intervention Elliott et al. (2014) United States QUANT 128 Wife (45) Mother (42) Daughter (9) Father (7) Husband (7) Sister (7) Son (1) Other (9) 40.8±12.7 (18-74) Tetraplegia (66) Paraplegia (57) Complete (65) Incomplete (58) Survey 188 Elliott et al. (2001) United States QUANT 66 Mother (21) Wife (12) Daughter (7) Sister (4) Husband (4) Father (4) Brother (1) Other (5) 42.9±15.74 (26-73) N/A N/A Survey Foster et al. (2005) Australia MIXED 179 Spouse/Partner (111) *Remainder unspecified (15-83.4) Tetraplegia (99) Paraplegia (76) Other (4) Complete (82) Incomplete (93) Other (4) Survey Gajraj-Singh (2011) Fiji QUANT 30 Spouse (13) Mother (5) Sibling (5) Child (4) Cousin (2) Grandparent (1) 39.2±14.1 (21-70) Tetraplegia (12) Paraplegia (18) Complete (23) Incomplete (7) Survey Godbout (1995) Canada QUAL 3 Wife (3) (40-) Tetraplegia (3) N/A Interviews Graça et al. (2013) Brazil QUANT 7 Wife (4) Mother (3) 51.3±4.2 N/A N/A Survey 189 Hui et al. (2007) United States QUANT 61 Wife (20) Mother (18) Daughter (5) Husband (4) Grandparent (4) Other (5) Sibling (3) Father (1) Friend (1) 48.6±15.3 (20-85) Tetraplegia (36) Paraplegia (25) Complete (22) Incomplete (39) Survey Isaksson et al. (2008) Sweden QUAL 4 Husband (4) (40s-60s) N/A N/A Open-Ended Interviews Khazaeipour et al. (2017) Iran QUANT 163 Other – Family (79) Spouse (46) Parent (38) 38.1±13.3 Tetraplegia (32) Paraplegia (127) Complete (67) Incomplete (70) Structured Interview Kolakowsky-Hayner and Kishore (1999) United States QUANT 14 N/A N/A N/A N/A Survey Lucke et al. (2004) United States QUANT 10 Wife (3) Husband (1) Mother (4) Sister (2) 45±8.0 (30-57) Tetraplegia (6) Paraplegia (4) Complete (5) Incomplete (5) Structured Interview Lucke et al. (2013) United States QUAL 9 Wife (5) Mother (3) Father (1) 48 (30s-60s) Tetraplegia (9) Paraplegia (1) N/A Interviews 190 Ma et al. (2014) China QUANT 150 Wife (117) *Remainder unspecified N/A N/A Complete (57) Incomplete (93) Survey Meade et al. (2004) United States QUANT 17 Mother (6) Wife (5) Girlfriend (2) Sister (2) Husband (1) Other (1) 43.9±15.7 (20-83) Tetraplegia (4) Paraplegia (13) Complete (7) Incomplete (10) Survey Middleton et al. (2014) Australia QUANT 44 Spouse/Partner (20) Parent (17) Sibling (3) Child (1) Non-Relative (3) (<20-74) Tetraplegia (30) Paraplegia (14) Complete (10) Incomplete (34) Survey Molazem et al. (2014) Iran INTER 62 Parent (32) Wife (24) Sister (4) Other (2) 44.4±12.2 Tetraplegia (14) Paraplegia (46) N/A Intervention Morlett-Paredes et al. (2014) Columbia QUANT 40* Parent (18) Spouse/Partner (11) Sibling (6) Friend (1) Other - Family (2) Non-Family (Attendant) (2) 44.3±16.4 N/A N/A Survey 191 Morrison et al. (2017) United States MIXED 178 Mother (146) Father (22) Grandmother (5) Other (4) Stepmother (1) N/A Tetraplegia (57) Paraplegia (121) Complete (87) Incomplete (191) Survey Paker et al. (2011) Turkey QUANT 31 Spouse (14) Sibling (11) Mother (2) Child (2) Other (2) 37.5±14.2 Tetraplegia (8) Paraplegia (23) Complete (23) Incomplete (8) Survey Pelletier et al. (1994) Canada QUANT 14 Spouse (6) Parent (5) Sibling (1) Unspecified (2) 45.2±10.2 N/A Complete (13) Incomplete (1) Survey Rattanasuk et al. (2013) Thailand QUANT 205 Spouse (92) *Remainder unspecified 43.93 N/A N/A Survey Rivera et al. (2003) United States INTER 1* Wife (1) 38 N/A N/A Intervention/Case Study Rodakowski et al. (2012) United States QUANT 173* Spouse (120) Parent (4) Child (14) Other (34) 53±15 N/A Complete (64) Incomplete (84) Survey Rodakowski et al. (2013) United States QUANT 173* Spouse (120) Parent (4) Child (14) Other (34) 53±15 N/A Complete (64) Incomplete (84) Survey 192 Schulz et al. (1987) United States QUANT 67 Souse (57*) Immediate Family (11*) *Drop out from each group not specified N/A N/A N/A Structured Interview Schulz et al. (2009) United States INTER 173* Spouse (120) Child (14) Parent (4) Other (34) 53±15 N/A Complete (64) Incomplete (84) Intervention Secinti et al. (2017) Turkey QUANT 100 Spouse (33) Sibling (28) Mother (26) Father (6) Other - Family (7) 41.1±14.2 (15-63) Tetraplegia (25) Paraplegia (75) N/A Survey Sheija and Manigandan (2005) India INTER 35 Spouse (35) 35.4±12.8 N/A N/A Intervention Shewchuk et al. (2004) United States QUANT 60 Parent (26) Spouse (23) Sister (5) Children (4) Brother (2) 42.7±9.1 Tetraplegia (29) Paraplegia (28) Other (3) Complete (31) Incomplete (29) Structured Focus Group Simpson and Jones (2012) Australia QUANT 31 Spouse (25) Parent (6) 50±14 Tetraplegia (15) Paraplegia (16) Complete (16) Incomplete (15) Structured Interview 193 Weitzenkamp et al. (1997) United States QUANT 124 Spouse (124) 52 (32-76) Tetraplegia (70) Paraplegia (27) Unknown (27) N/A Survey Note: * indicates that the sample is a sub-sample of or the same sample as another included study 194 A.3 Behavioural Themes and Measures Identifed in Quantitative Articles Table 3 Behavioural themes and measures identified in quantitative articles Theme K = Definition Measure k = Example Articles Problem Solving/ Coping/Adapting 8 Objective behaviours or steps that are taken to solve a problem related to providing support, or to cope with or adapt to their life situation. Social Problem-Solving Inventory—Revised (SPSI–R) (D’Zurilla et al., 2002) 3 (Dreer et al., 2007; Elliott & Shewchuk, 2003; Elliott et al., 2001) Ways of Coping Checklist (WOC) (Folkman et al., 1986) 3 (Chan, 2000b; Chan et al., 2000; Paker et al., 2011) The Simplified Coping Style Questionnaire (Wang et al., 1999) 1 (Ma et al., 2014) The Carer’s Assessment of Managing Index (Nolan et al., 1998) 1 (Simpson & Jones, 2012) Leisure Time 4 To participate in leisure time activities such as travel/vacation or recreation. Katz’s Adjustment Scale – Relative Forms 2 and 3 (KASR) (Katz & Lyerly, 1963) 2 (Chan, 2000b; Chan et al., 2000) Patient Health Questionnaire-9 (PHQ-9) (Kroenke et al., 2001) 1 (Coleman et al., 2015) Measure of Community Integration (MCI) - Productivity Status (PS) based on work by DeJong and Hughes (1982) 1 (Boschen et al., 2005a) Daily Occupations 1 To engage in day-to-day activities such as cleaning, grocery shopping or house repairs Measure of Community Integration (MCI) - Productivity Status (PS) based on work by DeJong and Hughes (1982) 1 (Boschen et al., 2005a) Work/ Employment 1 Maintaining employment or seeking education while assuming a support providing role Measure of Community Integration (MCI) - Productivity Status (PS) based on work by DeJong and Hughes (1982) 1 (Boschen et al., 2005a) 195 A.4 Behavioural Themes and Descriptive Examples Identified in the Qualitative Articles Table 4 Behavioural themes and descriptive examples identified in the qualitative articles Theme k = Definition Example Leisure Time Activities 11 To participate in leisure time activities such as travel/vacation or recreational activities “I ended up going away with my friend for a week abroad and as much as I felt guilty as hell for leaving them, they were absolutely fine and I had a great week where I didn’t have to think about access, wheelchairs, ramps, sliding boards, anything. I just got a week I didn’t have to think of any of that, it was absolutely great.” (Dickson et al., 2011, 250) Provision of Care and/or Support 9 The act of providing practical support to someone with an SCI or family members/friends that are involved with someone with an SCI “Yeah because I’m helping to look after everybody and I’m like (sigh) why do I have to do this, why can’t somebody else, but because they’re all looking after. . . [sibling with SCI].” (Akhtar et al., 2012, 306) Provision of Emotional Support 9 The act of providing emotional support to someone with an SCI or family members/friends that are involved with someone with an SCI “She came on a stretcher and we met her at home, and she had tears in her eyes. I thought, what had happened, and it was this information. At this moment you had to say something, but what on earth could you say, what could you say?” (Isaksson et al., 2008, 241) Daily Occupations 9 To engage in day-to-day activities such as cleaning, grocery shopping or house repairs) “But everyday life had to go on and many had to manage a double job. In some cases, it was coping with both the household tasks and managing the injured partner as well, which the injured partner’s wellbeing depended on. It was both mentally and physically demanding to substitute for the injured partner. The attempt to overcome everything was extremely strenuous for some.” (Angel & Buus, 2011, 6) Social Skills and Interpersonal Relationships 8 Engaging in techniques or behaviours to enhance existing relationships or build new ones “I don’t know, probably actually spend a lot more time with him now than I did before, we might go up to the pub or just chill.” (Akhtar et al., 2012, 309) 196 Problem Solving/ Coping/Adapting 6 Techniques or objective behaviours carried out by support providers to problem solve, cope with or adapt to their new life situation “There’s no going back, there’s only going forward, so how do we turn this into something that has value not only for us but for something productive in the world? …we both draw a lot of strength from thinking that way and working on projects and things that will not only enhance and develop our lives together, but also that has some value and productivity in the world.’” (Charlifue et al., 2016, 734) Sex 6 Engaging in sex or acts of intimacy ‘Change in sexual life following a spinal cord injury was rated as a high priority by most of those carers who were married to a quadriplegic person.’ (Delargy et al., 1988, 147) Receiving Social Support 5 Accepting or seeking social support from others in the context of their friend or loved one’s SCI ‘This could make an important difference to the partner’s situation. The need for support was also very concrete because the partner spent so much time in the hospital. This could include help with cleaning, the laundry, caring for animals, or preparing food. Especially, if the partner also had children to take care of, friends and relatives could be a significant resource’ (Angel & Buus, 2011, 5) Work/Employment 5 Maintaining employment or seeking education while assuming a support providing role “I just couldn’t go into work. I drove by, but I didn’t get anything done and I couldn’t do it” (Angel & Buus, 2011, 5) Involvement in the Rehabilitation Process 2 Active participation in the rehabilitation process of their friend or loved one with SCI (e.g., involvement with groups, therapy, instructions on providing care at home, etc.) ‘There was a need for support in relation to being included in care and treatment of the injured partner. The narratives show different levels of need for inclusion. In [one participant’s] situation, the professional managed to meet his wishes: ‘‘I was allowed to stay as much as I wanted to. I believe this was the right thing for me.” (Angel & Buus, 2011, 5) Hiring a Paid Caregiver 3 To hire a professional carer to aid in supporting their friend or loved one with SCI “I hired a foreign carer to take care of my husband.” (Chen & Boore, 2009, 178) Seeking Resources 3 Actively seeking out or asking for information or resources. “In our area many couples appear to be reticent about asking for information on sexual matters.” (Delargy et al., 1988, 147) Finding a Routine 1 Establishing a routine for providing care and/or maintaining self-care “Well, we had to get a routine. My husband had to be turned every two hours. I kept him spotless. There was a nurse or a nurse’s aide who came to the house every day. But they did not help him get up. I learned how to do that myself.” (Lucke et al., 2013, 223) 197 A.5 Behavioural Themes and Measures Identified in the Intervention Articles Table 5 Behavioural themes and measures identified in intervention articles Theme K= Definition Measures k= Articles Referencing Measure Problem-Solving 4 “The cognitive-behavioural process by which a person attempts to identify or discover effective or adaptive solutions to stressful problems encountered during the course of everyday living” (Nezu, 2004, 3) Social Problem-Solving Inventory—Revised (SPSI–R) (D’Zurilla et al., 2002) 3 (Elliott & Berry, 2009; Elliott et al., 2008; Rivera et al., 2003) No measure 1 (Sheija & Manigandan, 2005) Self-Care 1 "The extent to which [a person has] been drinking more than usual in the past month, smoking more than usual, exercising regularly, eating healthy or well-balanced meals, seeing primary care physician for routine checkups, seeing a dentist for routine checkups, and taking prescription medications appropriately.” (Schulz et al., 2009, 7) No title (Burton et al., 2000; Wisniewski et al., 2003) 1 (Schulz et al., 2009) Communication 1 “To communicate with the individual with SCI, family/friends, health care professionals and ability of the individual with SCI to communication with family/ friends, health care professionals” (Schulz et al., 2009, 19) No title (Burton et al., 2000; Wisniewski et al., 2003) 1 (Schulz et al., 2009) Social/Community Integration 1 “To connect with others for ideas and emotional support and remain integrated with the community” (Schulz et al., 2009, 20) No title (Burton et al., 2000; Wisniewski et al., 2003) 1 (Schulz et al., 2009) 198 A.6 Prevalence of TDF Domains and Included Barrier (B) and Facilitator (F) Themes Table 6 Prevalence TDF domains and included barrier (B) and facilitator (F) themes TDF Domain Frequency (n=, % total) Theme Sample quote/explanation Environmental Context and Resources 94, 42.7% Access to support/ Resources (B, F) ‘’[Taking on additional responsibilities] did not receive much understanding and recognition from the health and social system’(B) (Angel & Buus, 2011, 7) ‘[Family support providers] described spending a great deal of time with their loved one in the hospital and during rehabilitation receiving instruction and training from the nurses and therapists’ (F) (Lucke et al., 2013, 222) Accessibility (B, F) “We can’t go to a lot of our friends’ houses anymore because they live in apartments” (B) (Charlifue et al., 2016, 734) ‘The men also made environmental changes at home, for example, taking away doorsteps and making ramps, so the women could move more freely and participate in occupations in their homes’ (F) (Isaksson et al., 2008, 242) Time (B) “I am so busy and have no free time.” (B) (Chen & Boore, 2009, 180) Experiences with Professional Services (e.g., hired carers) ‘All participants who used paid caregivers had negative experiences with them’ (B) (Ellenbogen et al., 2006, 41) Social Influences 36, 16.4% Social Support (F) ‘The men received support from family and friends, for example through environmental changes to make modifications in the home environment.’ (F) (Isaksson et al., 2008, 239) Socially Inappropriate (B) ‘People might have stopped participating in certain activities that are usually done as a pair, preferring to forgo the activity completely than to do it without their partner.’ (B) (Beauregard & Noreau, 2010, 1950) Behaviour/Condition of Care Recipient (B) “He never talks to anyone and he angers easily. I don’t know how to communicate with him…” (B) (Chen & Boore, 2009, 180) 199 Persuassion by Others (F) “[The nurses] told me that I should go home and eat some good food and drink a glass of wine and make sure to have enough energy to get through the next day. So I did, and it was good. It was really good advice for me.” (Angel & Buus, 2011, 5) Relationships with Professional Services (F) “Somebody who comes in and treats you like you’re a human being and if you explain something to them if they’ve not been in before, you explain how to work with you, that is a good carer.” (Dickson et al., 2011, 253) Social/Professional Role or Identity 26, 11.8% Obligation or responsibility to engage in a behaviour (F) versus obligations to a competing behaviour preventing engagement in other behaviours (B) ‘They felt that it was their responsibility to take care of their injured spouses and should not regard it as a kind of burden although it was shown previously that there were difficulties’ (F) (Chan, 2000a, 768) ‘Caregivers experienced conflict between providing the best care to their loved one and meeting their own needs or those of other family members’ (B) (Lucke et al., 2013, 222) Changing Roles (F) ‘To keep their partner’s required care from negatively impacting on their relationship, several female spouses chose to not be sole caregivers’ (F) (Beauregard & Noreau, 2010, 1953) Tasks Falling to One Person (F) ‘The majority of housework appeared to be carried out by the spouse of the person with SCI’ (F) (Beauregard & Noreau, 2010, 1951) Skills 15, 6.8% Physical Capabilities of the Person with SCI (B) ‘Difficulties could also arise from the spouse’s perception of environmental obstacles or the abilities of the partner with SCI’ (Beauregard & Noreau, 2010, 1950) Previous Experiences (F) ‘It seemed as if men with previous experiences of life crises were able to handle this new situation in a better way emotionally than the men without such experiences. This gave them better strategies to handle their emotional thoughts and feelings by themselves and the changed life situation together with their wife’ (Isaksson et al., 2008, 239) Unprepared (B) ‘They were unprepared for the angry outbursts and threats of suicide, and did not know how to help their loved one move forward emotionally’ (Lucke et al., 2013, 222) 200 Behavioural Regulation 12, 5.5% Finding a new way to do things (F) ‘They also developed strategies so they could participate with their wives in occupations they both found meaningful, for example sailing and travelling in a new manner.’ (Isaksson et al., 2008, 242) Do what you can (F) ‘One strategy to handle the changed life situation emotionally was to give even more practical support in daily occupations and trying to do even better in the practical support. Through this, the men could feel that they supported their wives even if it was not precisely what the women asked for or needed.’ (Isaksson et al., 2008, 241) Planning/setting time aside (F) versus the challenges with planning ahead (B) ‘Setting aside some time for oneself was also given as a way to help the couple remain strong’ (F) (Beauregard & Noreau, 2010, 1950) ‘Lack of spontaneity and needing to plan ahead’ (B) (Charlifue et al., 2016, 734) Emotion 12, 5.5% Exhaustion (B) “You’re tired and you’ve got enough to do without phoning up this person and being passed to that person and filling in this form or that form or getting a letter from the hospital or your doctor. It’s never-ending.” (Dickson et al., 2011, 251) Guilt/Shame (B) “I ended up going away with my friend for a week abroad and as much as I felt guilty as hell for leaving them” (Dickson et al., 2011, 250) Anxiety (B) “I began to have anxiety attacks. I started to worry about everything.” (Lucke et al., 2013, 222) Fatalism (B) “I never think about our future. I don’t know how to solve this problem. Day in day out, our life is walking into darkness.’ (Chen & Boore, 2009) Beliefs about Capabilities 10, 4.6% Feeling unprepared (B) versus feeling a sense of achievement (F) ‘Caregivers felt unprepared to deal with inadequate pain management, complications and side effects’ (Lucke et al., 2013, 222) ‘The men found that these changes were important for both of them and were satisfied to have the competence to make them.’ (F) (Isaksson et al., 2008, 242) Feeling incapable (B) “Certainly, I would like to have a sexual life with my husband. But I know it is impossible.” (Chen & Boore, 2009, 179) 201 Intentions 5, 2.3% Actively resolving to engage in a behaviour (F) ‘The study showed that family carers often assumed a highly active role in the rehabilitation process in an attempt to gain the necessary skills and information about spinal cord injury needed to undertake the carer role.’ (Chen & Boore, 2009, 178) Knowledge 4, 1.8% Awareness of available resources (B) ‘They also wanted to get help from health professionals, but they did not know how to find such kind of services.’ Awareness of care recipient’s abilities (B, F) ‘They were now in a situation where they did not have enough knowledge of the consequences of the women’s SCI for their performance in daily occupations.’ (B) (Isaksson et al., 2008, 240) ‘The men thereby gained a better insight into the women’s needs for participation in daily occupations and developed practical solutions’ (F) (Isaksson et al., 2008, 241) Beliefs about Consequences 4, 1.8% Doing what you can (F) ‘The men thought that through communications they could gain an understanding of how they could support each other in their daily life and through that reduce their insecurity.’ (Isaksson et al., 2008, 241) Experiences with engaging in a behaviour (B) ‘Difficulty or unpleasantness of bowel and bladder care’ (B) (Charlifue et al., 2016, 734) Memory, Attention, and Decision Process 2, 0.9% To forget or lack concentration ‘To forget oneself needing care and guidance’ (Angel & Buus, 2011, 4) Re-framing ‘Yet, as we have seen, this was almost always countered with a more positive re-appraisal of the situation and adaptation to a new life as a spousal caregiver. This was a choice that one participant (Iona) believed ‘just comes naturally’.’ (Dickson et al., 2011, 252) Optimism 1, 0.5% Things can’t get worse “We’ve now got to the stage where we know whatever comes along we can get through it, you know. We’ve had a few knocks in the past and we’ve got there and then this one came along and we got through this [SCI], so what else can happen that can throw a spanner in the works? I really don’t think there’s anything else, I think we’ve weathered the storm and we’ve come out of it quite well.” (Dickson et al., 2011, 252) 202 Note: (B) refers to barriers and (F) refers to facilitatorsReinforcement 1, 0.5% Rewarding experiences (F) ‘Caregivers were rewarded by their involvement in different organizations and educating others about SCI.’ (Morrison et al., 2017, 55) 203 A.7 Prevalence of BCTs Used in Intervention Articles Table 7 Prevalence of BCTs used in intervention articles BCT # BCT Name Number of articles using BCT 1.2 Problem-solving 6 4.1 Instruction on how to perform the behaviour 5 8.1 Behavioural practice and rehearsal 4 2.2 Feedback on behaviour 3 13.2 Framing/reframing 3 6.1 Demonstration of the behaviour 2 10.4 Social reward 2 11.2 Reduce negative emotions 2 3.1 Social support (unspecified) 1 12.5 Adding objects to the environment 1 Note: BCTs are categorized and defined using the BCTTv1 (Michie et al., 2013) 204 A.8 Outcome Themes and Measures Identified in Quantitative Articles Table 8 Outcome themes and measures identified in quantitative articles Theme K = Measures k = Articles Using Measure Caregiver burden 13 Zarit Burden Interview (ZBI) (Zarit et al., 1980). 6 (Arango-Lasprilla et al., 2010; Coleman et al., 2015; Doyle et al., 2016; Khazaeipour et al., 2017; Ma et al., 2014; Morlett-Paredes et al., 2014) Caregiver Burden Scale (CBS) (Novak & Guest, 1989) 3 (Chan, 2000b; Chan et al., 2000; Gajraj-Singh, 2011) Caregiving Burden Scale (CBS) (Oberst, 1991) 1 (Rattanasuk et al., 2013) Caregiver Burden Scale (Elmståhl et al., 1996) 2 (Blanes et al., 2007; Simpson & Jones, 2012) Burden Assessment Scale (Reinhard et al., 1994) 1 (Secinti et al., 2017) Depression 13 The Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977) 5 (Dreer et al., 2007; Elliott et al., 2001; Rodakowski et al., 2013; Schulz et al., 1987; Weitzenkamp et al., 1997) Patient Health Questionnaire-9 (PHQ-9) (Kroenke et al., 2001) 4 (Coleman et al., 2015; Doyle et al., 2016; Morlett-Paredes et al., 2014; Paker et al., 2011) Beck Depression Index (Beck et al., 1961) 2 (Chan et al., 2000; Secinti et al., 2017) Inventory to Diagnose Depression (IDD) (Zimmerman & Coryell, 1987) 2 (Elliott & Shewchuk, 2003; Hui et al., 2007) Satisfaction with Life 8 Satisfaction With Life Scale (SWLS) (Diener et al., 1985) 7 (Arango-Lasprilla et al., 2010; Chan, 2000b; Chan et al., 2000; Coleman et al., 2015; Doyle et al., 2016; Hui et al., 2007; Morlett-Paredes et al., 2014) 205 Life Satisfaction Index (LSIA-A) (Adams, 1969) 1 (Schulz et al., 1987) Health 7 The MOS Short Form General Health Survey - 36 (SF-36) (Stewart et al., 1988)*One translated 5 (Blanes et al., 2007; Coleman et al., 2015; Ebrahimzadeh et al., 2013; Elliott & Shewchuk, 2003; Secinti et al., 2017) Pennebaker Inventory of Limbic Languidness Scale (PILL) (Pennebaker, 1982) 1 (Elliott et al., 2001) The Family Needs Questionnaire (FNQ) (Kreutzer et al., 1988) 1 (Meade et al., 2004) Quality of Life 6 Quality of Life (QOL) (Flanagan, 1982; Nosek et al., 1992) 2 (Boschen et al., 2005a; Boschen et al., 2005b) WHO-Five Well-Being Index (WHO-5) (Bech et al., 1998) 1 (Rattanasuk et al., 2013) Anxiety 4 State Trait Anxiety Inventory (Spielberger et al., 1983) 3 (Coleman et al., 2015; Elliott et al., 2001; Morlett-Paredes et al., 2014) Hospital Anxiety and Depression Scale (Snaith, 2003) 1 (Paker et al., 2011) Well-Being 3 Index of Psychological Well-Being (IP WB) (Berkman, 1971) 2 (Gajraj-Singh, 2011; Schulz et al., 1987) Center for Epidemiologic Studies Depression Scale (CES-D) 36 (Radloff, 1977) 1 (Weitzenkamp et al., 1997) Physical Functioning 3 SF-36 (Stewart et al., 1988) 3 (Coleman et al., 2015; Ebrahimzadeh et al., 2014; Elliott & Shewchuk, 2003) Support 3 Interpersonal Support Evaluation Short Version (ISEL-12) (Cohen & Hoberman, 1983) 1 (Arango-Lasprilla et al., 2010) FNQ (Kreutzer et al., 1988) 1 (Meade et al., 2004) Perceived Social Support From Family Scale (PSSFA) (Procidano & Heller, 1983) 1 (Pelletier et al., 1994) 206 Emotional Functioning/Mental Health 3 SF 36 (Stewart et al., 1988) 3 (Blanes et al., 2007; Elliott & Shewchuk, 2003; Simpson & Jones, 2012) Dyadic and Family Functioning 3 Dyadic Adjustment Scale (DAS) (Spanier, 1976) 2 (Chan, 2000b; Chan et al., 2000) Family Assessment Devices – General Functioning (FAD-GF) (Epstein et al., 1983) 1 (Doyle et al., 2016) Family Adaptability and Cohesion Evaluation Scale (FACES) IV (Olson, 2010) 1 (Doyle et al., 2016) Pearlin’s Model of Caregiving (Pearlin et al., 1990) 1 (Elliott et al., 2014) Social Functioning 3 SF 36 (Stewart et al., 1988) 3 (Coleman et al., 2015; Ebrahimzadeh et al., 2014; Elliott & Shewchuk, 2003) Vitality 3 SF 36 (Stewart et al., 1988) 3 (Blanes et al., 2007; Coleman et al., 2015; Ebrahimzadeh et al., 2014; Elliott & Shewchuk, 2003) Stress 2 Perlin’s Model of Caregiving (Pearlin et al., 1990) 1 (Elliott et al., 2014) The Perceived Stress Scale (PSS) (Cohen et al., 1983) 1 (Weitzenkamp et al., 1997) 207 A.9 Outcome Themes and Descriptive Examples Identified in Qualitative Articles Table 9 Outcome themes and descriptive examples identified in qualitative articles Theme k = Definition Example Relationship Changes and Breakdown 6 Changes in romantic, marital or family relationships due to the support providing role “For me, I think the nature of the relationship has changed from mutual sharing to sympathy. I can’ t accurately describe how I feel except to say that I feel sorry for him.” (Chan, 2000a, 768). Role Reversal 6 A reversal in social roles due to SCI. Role reversal may include reallocation of tasks typically completed by one member of the family such as childcare, housework or yard maintenance “Well I have to do everything for myself, I’ll just be like picking up stuff, I have to, I just have to do more stuff. I can’t just relax. [sibling with SCI] is relaxing or my mum or dads playing the X box with [sibling with SCI] and I’m here dusting and hoovering.” (Akhtar et al., 2012, 307). Intimacy 3 Changes in couples’ forms of intimacy due to SCI or the support providing role “Of course, the relationship isn’t like what it was before… Over time, however, I believe that we develop something else—possibly less physical, more sentimental—I don’t know how to explain it. The bond is uniting us as strong as it ever was. That hasn’t changed for me.” (Beauregard & Noreau, 2010, 1952). Overload and Strain 11 Feeling burdened or overwhelmed by support providing tasks or emotions related to their loved one or friend’s injury “There is increased stress for support providers, who feel abandoned and alone. Even with this increased stress, they are providing good support but feel that the stress will have delayed, long term consequences: ‘It’s that the responsibility just weighs and weighs so heavily, just constantly’; ‘God 208 forbid anything should happen to me’; ‘I just collapsed in the bed in tears because of the relief of having him back where somebody else can care for him.’ ” (Boschen et al., 2005b, 404) Adjustment and Adaptation 9 The internal process of accepting and adjusting or not accepting and adjusting to life as a support provider to someone with an SCI “It is hard to believe that this will be my life forever sometimes I see fathers who take their children to school and I think about how our lives would be without the SCI, this accident has shocked everyone.” (Conti et al., 2016, 164) Emotions Towards a Person with SCI 5 Various emotions felt by support providers towards the individual with SCI they support “Anger or resentment toward family member with SCI with no outlet for anger” (Charlifue et al., 2016, 734) Community Integration 5 One’s perception of or readiness for community integration and assuming the care providing role. Includes the perception that one lacks the skills or knowledge to carry out this role resulting in a feeling of being unprepared “What am I gonna do on my own? Then, my God, how am I going to do that (to take care)? Oh, my Jesus!” (de Azevedo & de Gouveia Santos, 2006, 776) Hope and Resilience 4 Feeling’s about one’s ability to get through the trauma of their friend or loved one’s SCI. Feelings may include but are not limited to, hopefulness, fear or uncertainty ‘A feeling of disorientation, typical of the acute phase, during which there is a big concern for the safety of their relative, is mitigated by hopes felt at the rehabilitation center which is indeed seen as the starting point for retrieving autonomy.’ (Conti et al., 2016, 162) Social Circles and Isolation 4 Objective and subjective changes in one’s social circumstance such as a loss or change in a friend group or feelings of isolation “And you just sit at home with your thoughts. Then you ring up only to hear that George is enjoying himself with the others and you are just sitting there while the kids are sleeping, alone with your sad thoughts and the TV as 209 your only companion.” (Angel & Buus, 2011, 6). Loss of Identity 4 Feeling a loss of one’s personal identity or “old life” “I can’t say in the morning . . . ’ah I’ll have a lie in today’. I can’t do that and . . . I can’t say ‘I’ll not bother coming home until maybe I have been out and had a meal. I can’t do that, so my whole life has been changed.” (Dickson et al., 2010, 1112) Guilt and Responsibility 3 Perceived obligations or responsibility or in the context of their family member, partner or friend’s SCI and emotions that may support one’s perceived obligations “Despite many of the participants reporting dissatisfaction with their acquired caregiver roles, the majority of them appeared to accept them. This acceptance seemed to be, in the most part, motivated by guilt associated with upholding marital vows - participants felt they did not have the option of 'running away' or 'turning their backs' on their marital commitment’” (Dickson et al., 2010, 1111) Autonomy 2 The subjective experience of having choice or control over their life “There is a sense of responsibility and family members can feel as if they have no choice. ‘I did it because I had to, it wasn’t an option.’” (Burns et al., 2014, 410) Satisfaction with Available Resources 2 Experiences with resource services such as medical resources, government/ community resources or hired carers “We went through hell working with the insurance company.” (Boschen et al., 2005b, 403) Personal Growth 2 Feelings of personal growth or personal development as a result of taking on a support providing role “It was very much a journey of self-awareness for me. I learned a lot about myself and what I am capable of doing.” (Boschen & Gargaro, 2009, 80) Note: n= refers to the number of articles from which the theme is sourced 210 A.10 Outcome Themes and Measures Identified in Intervention Articles Table 10 Outcome themes and measures identified in intervention articles Theme K = Measures k = Articles Using Measure Life Quality 5 SF-36 (Ware et al., 1993) 4 (Elliott & Berry, 2009; Elliott et al., 2008; Molazem et al., 2014; Rivera et al., 2003) World Health Organization Quality of Life – Brief (WHOQOL-BREF) (World Health Organization, 1996) 1 (Sheija & Manigandan, 2005) Depression 5 Inventory to Diagnose Depression (IDD) (Zimmerman & Coryell, 1987) 3 (Elliott & Berry, 2009; Elliott et al., 2008; Rivera et al., 2003) Hospital Anxiety and Depression Rating (HAD) (Zigmond & Snaith, 1983) 1 (Sheija & Manigandan, 2005) The Center for Epidemiological Studies Depression Scale (CES-D) (Radloff, 1977) 1 (Schulz et al., 2009) Caregiver Burden 1 Brief (12-item) Caregiver Burden Interview (Bédard et al., 2001) 1 (Schulz et al., 2009) Social Integration 1 No title (Belle et al., 2006) 1 (Schulz et al., 2009) Physical Health 1 No title (Belle et al., 2006) 1 (Schulz et al., 2009) Psychological Distress 1 General Health Questionnaire (GHQ) (Kuruvilla et al., 1999) 1 (Sheija & Manigandan, 2005) 211 A.11 References Adams, D.L. (1969). Analysis of a Life Satisfaction Index. Journal of Gerontology, 24, 470-474. Akhtar, M., Kennedy, P., Webster, G., & Graham, A. (2012). What about us? Children's experiences of living with a sibling with spinal cord injury. Journal of Pediatric Rehabilitation Medicine, 5, 301-313. Angel, S., & Buus, N. (2011). The experience of being a partner to a spinal cord injured person: A phenomenological-hermeneutic study. International Journal of Qualitative Studies on Health and Well-being, 6, 1-11. Arango-Lasprilla, J.C., Olivera Plaza, S.L., Drew, A., Perdomo Romero, J.L., Pizarro, J.A.A., Francis, K., et al. (2010). Family needs and psychosocial functioning of caregivers of individuals with spinal cord injury from Colombia, South America. NeuroRehabilitation, 27, 83-93. Beauregard, L., & Noreau, L. (2010). Spouses of persons with spinal cord injury: impact and coping. British Journal of Social Work, 40, 1945-1959. Bech, P., Lindberg, L., Refsgaard, E., Lunde, M., & Søndergaard, S. (1998). The WHO-five well-being index (WHO-5). Geneva: World Health Organization. Beck, A.T., Ward, C.H., Mendelson, M.M., Mock, J.J., & Erbaugh, J.J. (1961). An inventory for measuring depression. Archives of General Psychiatry, 4, 561-571. Bédard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & O'Donnell, M. (2001). The Zarit Burden InterviewA New Short Version and Screening Version. The Gerontologist, 41, 652-657. Belle, S.H., Burgio, L., Burns, R., Coon, D., Czaja, S.J., Gallagher-Thompson, D., et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Annals of Internal Medicine, 145, 727-738. Berkman, P.L. (1971). Measurement of mental health in a general population survey. American Journal of Epidemiology, 94, 105-111. Blanes, L., Carmagnani, M.I.S., & Ferreira, L.M. (2007). Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 45, 399-403. Boschen, K.A., & Gargaro, J. (2009). Experiential outcomes of the SCI support provider role. Topics in Spinal Cord Injury Rehabilitation, 14, 69-87. Boschen, K.A., Gargaro, J., & Tonack, M.I. (2005a). Community integration and quality of life comparisons among spinal cord injured, support provider, and comparative samples. Topics in Spinal Cord Injury Rehabilitation, 10, 116-134. Boschen, K.A., Tonack, M.I., & Gargaro, J. (2005b). The impact of being a support provider to a person living in the community with a spinal cord injury. Rehabilitation Psychology, 50, 397-407. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. Burns, A.S., St-Germain, D., Connolly, M., Delparte, J.J., Guindon, A., Hitzig, S.L., et al. (2014). Neurogenic bowel after spinal cord injury from the perspective of support providers: a phenomenological study. American Academy of Physical Medicine and Rehabilitation, 7, 407-416. 212 Burton, L., Schulz, R., Jackson, S., Hirsch, C., & Zdaniuk, B. (2000). Transitions in spousal caregiving: Experience from the Caregiver Health Effects Study (CHES). The Gerontologist, 40, 73. Carey, R.N., Evans, F., Horan, M., Johnston, M., West, R. & Michie, S. (2016). Mode of Delivery of Behaviour Change Interventions Taxonomy version 0 (MoDTv0). Chan, R.C.K. (2000a). How does spinal cord injury affect marital relationship? A story from both sides of the couple. Disability and Rehabilitation: An International, Multidisciplinary Journal, 22, 764-775. Chan, R.C.K. (2000b). Stress and coping in spouses of persons with spinal cord injuries. Clinical Rehabilitation, 14, 137-144. Chan, R.C.K., Lee, P.W., & Lieh-Mak, F. (2000). Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting. Spinal Cord, 38, 687-696. Charlifue, S.B., Botticello, A., Kolakowsky-Hayner, S.A., Richards, J.S., & Tulsky, D.S. (2016). Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal Cord, 54, 732-736. Chen, H.-Y., & Boore, J.R.P. (2009). Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 18, 174-182. Cohen, S., & Hoberman, H.M. (1983). Positive events and social supports as buffers of life change stress. Journal of Applied Social Psychology, 13, 99-125. Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A Global Measure of Perceived Stress. Journal of Health and Social Behavior, 24, 385-396. Coleman, J.A., Harper, L.A., Perrin, P.B., Landa, L.O., Olivera, S.L., Perdomo, J.L., et al. (2015). Mind and body: Mental health and health related quality of life in SCI caregivers from Neiva, Colombia. NeuroRehabilitation, 36, 223-232. Conti, A., Garrino, L., Montanari, P., & Dimonte, V. (2016). Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences. Disability & Rehabilitation, 38, 159-167. D’Zurilla, T.J., Nezu, A.M., & Maydeu-Olivares, A. (2002). Manual for the social problem-solving inventory-revised. North Tonawanda, NY: Multi-Health Systems. Davis, R., Campbell, R., Hildon, Z., Hobbs, L., & Michie, S. (2015). Theories of behaviour and behaviour change across the social and behavioural sciences: a scoping review. Health Psychology Review, 9, 323-344. de Azevedo, G.R., & de Gouveia Santos, V.L.C. (2006). (Handicapped) Caregiver: The social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 14, 770-780. DeJong, G., & Hughes, J. (1982). Independent living: methodology for measuring long-term outcomes. Archives of Physical Medicine and Rehabilitation, 63, 68-73. Delargy, M., Parry, H., & Burt, A. (1988). Quadriplegic care: an assessment of the impact of the carer. International Disability Studies, 10, 145-147. Dickson, A., O'Brien, G., Ward, R., Flowers, P., Allan, D., & O'Carroll, R. (2011). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: An interpretative phenomenological analysis. Journal of Health Psychology, 17, 247-257. Dickson, A., O’Brien, G., Ward, R., Allan, D., & O’Carroll, R. (2010). The impact of assuming the primary caregiver role following traumatic spinal cord injury: An interpretative 213 phenomenological analysis of the spouse's experience. Psychology & Health, 25, 1101-1120. Diener, E., Emmons, R.A., Larsen, R.J., & Griffin, S. (1985). The Satisfaction With Life Scale. Journal of Personality Assessment, 49, 71-75. Doyle, S.T., Perrin, P.B., Nicholls, E., Olivera, S.L., Quintero, L.M., Otálvaro, N.Y.M., et al. (2016). Pediatric SCI/D caregiver mental health and family dynamics in Colombia, South America. Disability & Rehabilitation, 38, 819-827. Dreer, L.E., Elliott, T.R., Shewchuk, R., Berry, J.W., & Rivera, P. (2007). Family caregivers of persons with spinal cord injury: Predicting caregivers at risk for probable depression. Rehabilitation Psychology, 52, 351-357. Ebrahimzadeh, M.H., Shojaee, B.S., Golhasani-Keshtan, F., Moharari, F., Kachooei, A.R., & Fattahi, A.S. (2014). Depression, anxiety and quality of life in caregiver spouses of veterans with chronic spinal cord injury. Iranian Journal of Psychiatry, 9, 133-136. Ebrahimzadeh, M.H., Shojaei, B.-S., Golhasani-Keshtan, F., Soltani-Moghaddas, S., Fattahi, A., & Mazloumi, S. (2013). Quality of life and the related factors in spouses of veterans with chronic spinal cord injury. Health and Quality of Life Outcomes, 11, 48. Ellenbogen, P.S., Meade, M.A., Jackson, M.N., & Barrett, K. (2006). The impact of spinal cord injury on the employment of family caregivers. Journal of Vocational Rehabilitation, 25, 35-44. Elliott, T.R., & Berry, J.W. (2009). Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: A randomized controlled trial. Journal of Clinical Psychology, 65, 406-422. Elliott, T.R., Berry, J.W., Richards, J.S., & Shewchuk, R.M. (2014). Resilience in the initial year of caregiving for a family member with a traumatic spinal cord injury. Journal of Consulting and Clinical Psychology, 82, 1072-1086. Elliott, T.R., Brossart, D., Berry, J.W., & Fine, P.R. (2008). Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: A randomized controlled trial. Behaviour Research and Therapy, 46, 1220-1229. Elliott, T.R., & Shewchuk, R.M. (2003). Social problem-solving abilities and distress among family members assuming a caregiving role. British Journal of Health Psychology, 8, 149-163. Elliott, T.R., Shewchuk, R.M., & Richards, J.S. (2001). Family caregiver social problem-solving abilities and adjustment during the initial year of the caregiving role. Journal of Counseling Psychology, 48, 223-232. Elmståhl, S., Malmberg, B., Annerstedt, L., Hhj, I.f.g., Högskolan i, J., Hälsohögskolan, et al. (1996). Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation, 77, 177-182. Epstein, N.B., Baldwin, L.M., & Bishop, D.S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9, 171-180. Flanagan, J.C. (1982). Measurement of quality of life: current state of the art. Archives of Physical Medicine and Rehabilitation, 63, 56-59. Folkman, S., Lazarus, R.S., Dunkel-Schetter, C., DeLongis, A., & Gruen, R.J. (1986). Dynamics of a stressful encounter: cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50, 992-1003. 214 Foster, M., Amsters, D., & Carlson, G. (2005). Spinal cord injury and family caregivers: A description of care and perception of service need. Australian Journal of Primary Health, 11, 91-101. Gajraj-Singh, P. (2011). Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 49, 928-934. Godbout, P. (1995). [Living at home with a quadriplegic spouse]. Infirmiere du Quebec, 2, 36-37. Graça, Á., Nascimento, M.A.d., Lavado, E.L., & Garanhani, M.R. (2013). Quality of life of primary caregivers of spinal cord injury survivors. Revista Brasileira de Enfermagem, 66, 79-83. Higher Education Funding Council for England: Research Excellence Framework 2014. (2014). Assessment framework and guidance on submissions 2011. Bristol, UK. Hui, S.K.A., Elliott, T.R., Shewchuk, R., & Rivera, P. (2007). Communal behaviors and psychological adjustment of family caregivers and persons with spinal cord injury. Rehabilitation Psychology, 52, 113-119. Isaksson, G., Josephsson, S., Lexell, J., & Skär, L. (2008). Men's experiences of giving and taking social support after their wife's spinal cord injury. Scandinavian Journal of Occupational Therapy, 15, 236-246. Katz, M.M., & Lyerly, S.B. (1963). Methods for measuring adjustment and social behavior in the community: I. Rationale, description, discriminative validity and scale development. Psychological Reports, 13, 503-535. Khazaeipour, Z., Rezaei-Motlagh, F., Ahmadipour, E., Azarnia-Ghavam, M., Mirzababaei, A., Salimi, N., et al. (2017). Burden of care in primary caregivers of individuals with spinal cord injury in Iran: its association with sociodemographic factors. Spinal Cord., 31. Kolakowsky-Hayner, S.A., & Kishore, R. (1999). Caregiver functioning after traumatic injury. NeuroRehabilitation, 13, 27-33. Kreutzer, J., Marwitz, J., & West, D. (1988). Family needs questionnaire. Richmond, VA: Rehabilitation Research and Training Center on Severe Traumatic Brain Injury, Medical College of Virginia. Kroenke, K., Spitzer, R.L., & Williams, J.B.W. (2001). The PHQ‐9. Journal of General Internal Medicine, 16, 606-613. Kuruvilla, A., Pothen, M., Philip, K., Braganza, D., Joseph, A., & Jacob, K.S. (1999). The validation of the Tamil version of the 12 item general health questionnaire. Indian Journal of Psychiatry, 41, 217-221. Lucke, K.T., Coccia, H., Goode, J.S., & Lucke, J.F. (2004). Quality of life in spinal cord injured individuals and their caregivers during the initial 6 months following rehabilitation. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 13, 97-110. Lucke, K.T., Martinez, H., Mendez, T.B., & Arévalo-Flechas, L.C. (2013). Resolving to go forward: The experience of latino/hispanic family caregivers. Qualitative Health Research, 23, 218-230. Ma, H.P., Lu, H.J., Xiong, X.Y., Yao, J.Y., & Yang, Z. (2014). The investigation of care burden and coping style in caregivers of spinal cord injury patients. International Journal of Nursing Sciences, 1, 185-190. 215 Meade, M.A., Taylor, A., Kreutzer, J.S., Marwitz, J.H., & Thomas, V. (2004). A preliminary study of acute family needs after spinal cord injury: analysis and implications. Rehabilitation Psychology, 49, 150-155. Michie, S., Atkins, L., & West, R. (2014). The Behaviour Change Wheel: A Guide to Designing Interventions. Great Britain: Silverback Publishing. Michie, S., & Prestwich, A. (2010). Are interventions theory-based? Development of a theory coding scheme. Health Psychology, 29, 1-8. Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., et al. (2013). The Behavior Change Technique Taxonomy (v1) of 93 hierarchically clustered techniques: Building an international consensus for the reporting of behavior change interventions. Annals of Behavioral Medicine, 46, 81-95. Middleton, J.W., Simpson, G.K., Wolf, A., Quirk, R., Descallar, J., & Cameron, I.D. (2014). Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 95, 1312-1319. Molazem, Z., Falahati, T., Jahanbin, I., Jafari, P., & Ghadakpour, S. (2014). The effect of psycho-educational interventions on the quality of life of the family caregivers of the patients with spinal cord injury: a randomized controlled trial. International Journal of Community Based Nursing & Midwifery, 2, 31-39. Morlett-Paredes, A., Perrin, P.B., Olivera, S.L., Rogers, H.L., Perdomo, J.L., Arango, J.A., et al. (2014). With a little help from my friends: Social support and mental health in SCI caregivers from Neiva, Colombia. NeuroRehabilitation, 35, 841-849. Morrison, M., Kelly, E.H., Russell, H.F., & Vogel, L.C. (2017). Rewards of parenting children and adolescents with spinal cord injuries. Spinal Cord, 55, 52-58. Nezu, A.M. (2004). Problem solving and behavior therapy revisited. Behavior Therapy, 35, 1-33. Nolan, M., Keady, J., & Grant, G. (1998). Assessing the needs of family carers: a guide for practitioners. London, UK: Pavillon Press. Nosek, M.A., Fuhrer, M.J., & Howland, C.A. (1992). Independence among people with disabilities: II. Personal independence profile. Rehabilitation Counseling Bulletin. Novak, M., & Guest, C. (1989). Application of a Multidimensional Caregiver Burden Inventory1. The Gerontologist, 29, 798-803. Oberst, M. (1991). Caregiving Burden Scale. Madison, WI: University of Wisconsin. Olson, D.H. (2010). Faces IV manual. Minneapolis, MN: Life Innovations. Paker, N., Bugdayci, D., Dere, D., & Altuncu, Y. (2011). Comparison of the coping strategies, anxiety, and depression in a group of Turkish spinal cord injured patients and their family caregivers in a rehabilitation center. European journal of physical & rehabilitation medicine., 47, 595-600. Pearlin, L.I., Mullan, J.T., Semple, S.J., & Skaff, M.M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594. Pelletier, P.M., Alfano, D.P., & Fink, M.P. (1994). Social support, locus of control and psychological health in family members following head or spinal cord injury. Applied Neuropsychology, 1, 38-44. Pennebaker, J.W. (1982). The Psychology of Physical Symptoms. New York, NY: Springer-Verlag New York Inc. . 216 Procidano, M.E., & Heller, K. (1983). Measures of perceived social support from friends and from family: Three validation studies. American Journal of Community Psychology, 11, 1-24. Radloff, L.S. (1977). The CES-D Scale:A Self-Report Depression Scale for Research in the General Population. Applied Psychological Measurement, 1, 385-401. Rattanasuk, D., Nantachaipan, P., Sucamvang, K., & Moongtui, W. (2013). A causal model of well-being among caregivers of people with spinal cord injury. Pacific Rim International Journal of Nursing Research, 17, 342-355. Reinhard, S.C., Gubman, G.D., Horwitz, A.V., & Minsky, S. (1994). Burden assessment scale for families of the seriously mentally ill. Evaluation and Program Planning, 17, 261-269. Research Ethics: Definition of a health outcome. (n.d.). Waterloo, ON: Unveristy of Waterloo. Rivera, P.A., Shewchuk, R., & Elliott, T.R. (2003). Project FOCUS: Using videophones to provide problem-solving training to family caregivers of persons with spinal cord injuries. Topics in Spinal Cord Injury Rehabilitation, 9, 53-62. Rodakowski, J., Skidmore, E.R., Rogers, J.C., & Schulz, R. (2012). Role of Social Support in Predicting Caregiver Burden. Archives of Physical Medicine and Rehabilitation, 93, 2229-2236. Rodakowski, J., Skidmore, E.R., Rogers, J.C., & Schulz, R. (2013). Does social support impact depression in caregivers of adults ageing with spinal cord injuries? Clinical Rehabilitation, 27, 565-575. Schulz, R., Czaja, S.J., Lustig, A., Zdaniuk, B., Martire, L.M., & Perdomo, D. (2009). Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial. Rehabilitation Psychology, 54, 1-15. Schulz, R., Tompkins, C.A., Wood, D., & Decker, S. (1987). The social psychology of caregiving: Physical and psychological costs of providing support to the disabled. Journal of Applied Social Psychology, 17, 401-428. Secinti, E., Yavuz, H.M., & Selcuk, B. (2017). Feelings of burden among family caregivers of people with spinal cord injury in Turkey. Spinal Cord., 07. Sheija, A., & Manigandan, C. (2005). Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 28, 379-383. Shewchuk, R.M., Rivera, P.A., Elliott, T.R., & Adams, A.M. (2004). Using cognitive mapping to understand problems experienced by family caregivers of persons with severe physical disabilities. Journal of Clinical Psychology in Medical Settings, 11, 141-150. Simpson, G., & Jones, K. (2012). How important is resilience among family members supporting relatives with traumatic brain injury or spinal cord injury? Clinical Rehabilitation, 27, 367-377. Snaith, R.P. (2003). The Hospital Anxiety And Depression Scale. Health and Quality of Life Outcomes, 1, 29. Spanier, G.B. (1976). Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. Journal of Marriage and Family, 38, 15-28. Spielberger, C., Gorsuch, R., Lushene, R., Vagg, P., & Jacobs, G. (1983). Manual for the State-Trait Anxiety Inventory Palo Alto, CA: Consulting Psychologists Press. Stewart, A.L., Hays, R.D., & Ware, J.E. (1988). The MOS Short-Form General Health Survey: Reliability and validity in a patient population. Medical Care, 26, 724-735. 217 Wang, X., Wang, X., & Ma, H. (1999). Mental Health Rating Scale Manual. Beijing, CN: Chinese Mental Health Journal Club. Ware, J.E., Snow, K., Kosinski, K., & Gandek, B. (1993). SF-36 Health Survey: Manual and Interpretation Guide. Boston, MA: Health Institute, New England Medical Center. Weatherson, K.A., Gainforth, H.L., & Jung, M.E. (2017). A theoretical analysis of the barriers and facilitators to the implementation of school-based physical activity policies in Canada: a mixed methods scoping review. Implementation Science, 12, 41. Weitzenkamp, D.A., Gerhart, K.A., Charlifue, S.W., Whiteneck, G.G., & Savic, G. (1997). Spouses of spinal cord injury survivors: the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 78, 822-827. Wisniewski, S.R., Belle, S.H., Coon, D.W., Marcus, S.M., Ory, M.G., Burgio, L.D., et al. (2003). The Resources for Enhancing Alzheimer's Caregiver Health (REACH): project design and baseline characteristics. Psychology and Aging, 18, 375-384. World Health Organization. (1996). WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment: field trial version. Geneva, CH: World Health Organization. Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist, 20, 649-655. Zigmond, A.S., & Snaith, R.P. (1983). The hospital anxiety and depression scale. Acta psychiatrica Scandinavica, 67, 361-370. Zimmerman, M., & Coryell, W. (1987). The Inventory to Diagnose Depression (IDD): A self-report scale to diagnose major depressive disorder. Journal of Consulting and Clinical Psychology, 55, 55. 218 Supplementary Files and Materials for Study 2 B.1 TDF Interview Guide Introduction for participants who want to complete the questionnaire over the phone: Before beginning the interview, I will start by reviewing the consent form with you to describe the study’s aim, any potential benefits you might receive, and any risks there may be. If you do not wish to continue with the interview after reviewing the consent information, we do not need to continue with the interview. If you do wish to continue, I will begin by asking you a few simple demographic questions. You do not have to answer any questions that you may feel uncomfortable with. We can pass that question and move on to the next. Do you have any further questions before we begin? Consent review script: Note: This script will be used if 1) participants would like to complete the questionnaire over the phone or 2) participants who completed the questionnaire online wish to review the consent information again If participant filled out the questionnaire online: Hello I am Rhyann McKay I received your phone number from the online questionnaire you filled out regarding family caregivers and spinal cord injury. Thank you for your interest in participating in this study. I am conducting interviews about topics and areas of research that should be prioritized to develop interventions to enhance the lives of family, friends and partners who provide support to people with an SCI. This research is being conducted at the University of British Columbia Okanagan in Kelowna B.C in the Department of Health and Exercise Sciences. This research is for my Master’s thesis which is being supervised by Dr. Heather Gainforth. Before we begin, would you like review the consent form that you saw online? Purpose: The purpose of this study is to develop research priorities for developing interventions aiming to support family, friends and partners who assist people with an SCI with activities of daily living and provide emotional support. To prioritize research efforts, this study aims to identify the areas of research that are most important to those that support people with an SCI including the outcomes of providing support that are most important to address, factors that may influence these outcomes and intervention methods that might may be helpful for those who support people with an SCI. You are being invited to take part in this study because you are a family member, friend or partner that supports someone with or you are someone with an SCI that receives support from a family member, friend or partner. For this study, you will have either previously completed an online contact information survey or you will complete the online contact information survey over the phone with a member of the 219 research team. A member of the research team will contact you schedule the interview at a time that works for us both. At the time of the interview, you will be asked to verbally consent to the interview being audio-recorded by a member of the research team. The interview will be one-on-one over the phone and will take approximately 60 to 90 minutes. Questions in the interview will involve the areas of research that you think are most meaningful, outcomes that you think should be addressed by this research as well as behaviours that you think might contribute to these outcomes. Questions might include “what are some of the positive things that you experience related to providing support to someone with an SCI?”. Risks: It is not likely that there will be any serious harms or discomforts associated with the interview. There are no known physical, psychological, economic or social risks associated with this study. You should not feel obligated to answer any material or participate in anything that you find objectionable or that makes you feel uncomfortable. You may also withdraw from the study at any time. Benefits: It is unlikely that there will be direct benefits to you, however, your participation in this study will help to prioritize intervention research efforts aiming to enhance the lives of family, friends and partners who support people with an SCI SCI. By participating in this research, participants can contribute to prioritizing research and guiding resources to areas that are most relevant to those who support people with an SCI and may be more likely to bring about positive outcomes for this population. Confidentiality: This online questionnaire is administered by the UBC-hosted version of FluidSurveys. All data will be stored and backed up in Canada. Data will be kept for at least five years after publication. All transcriptions and surveys from this study will be anonymized and kept in a locked filing cabinet in Dr. Gainforth’s Lab at UBC Okanagan. Electronic recordings, survey, and transcription data will be stored on password-protected computers in a locked office in Dr. Gainforth’s Lab at UBC Okanagan.. As this research is for thesis purposes, study documents will be published on cIRcle, and as such will publicly available on the internet. Research findings may also be published in professional journals or presented at scientific conferences, but any such presentations will be of general findings only and will never breach your confidentiality. Data will be stored for a minimum of 5 years following publication. Remuneration/Compensation: You will receive a $20 gift card to a retailer of your choice (i.e., Starbucks, Tim Hortons, Cineplex, Bath and Body Works, Best Buy) for participating in this study. You will be able to indicate how you would like to receive your gift card (i.e., by mail or by email) in an online contact survey that will be filled out before the interview. You will receive your gift card about three weeks following your participation in this study. 220 Contact for information about the study: If you have any inquiries or would like further information about this study, you may contact Dr. Heather Gainforth at (250) 807–9352 or (INSERT TOLL-FREE NUMBER). You can also email our team at heather.gainforth@ubc.ca or abc.lab@ubc.ca. Contact for concerns about the rights of research participants: If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Services at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Participant Complaint Line by email (RSIL@ors.ubc.ca). Please reference the study number H17-02308 when calling so the Complaint Line staff can better assist you. Consent: Your participation is entirely voluntary. You can decide to stop at any time, even part-way through the interview for whatever reason. If you decide to stop participating, there will be no consequences to you. We can discuss what is done with the data if you decide to stop. This could include returning it to you, destroying it or using the data collected up to that point. If you have any questions or would like further information about this study, you may contact Dr. Heather Gainforth at (250) 807–9352. You can also email our team at heather.gainforth@ubc.ca or abc.lab@ubc.ca I would be pleased to send you a short summary of the study results when I finish the analysis. Please let me know if you would like a summary and what would be the best way to get this to you. Interview Call: The purpose of this study is to help provide direction for intervention research aiming to enhance the lives of family, friends and partners who provide support to someone with an SCI. There is currently no clear understanding as to which areas are most important to address. Therefore, the purpose of this interview is to find out what research areas and topics you believe are most important to address and potential ways that researchers might be able to address them. Please remember that there are no right or wrong answers and you may withdraw at any point. I would just like to remind you that… - Your participation in this study is voluntary. - You can decide to stop at any time, even part-way through the interview for whatever reason. - If you decide to stop participating, there will be no consequences to you. - We can discuss what is done with the data if you decide to stop. This could include returning it to you, destroying it or using the data collected up to that point Consent Questions - Do you have any questions or would like any additional details? 221 - Do you agree to participate in this study knowing that you can withdraw at any point with no consequences to you? Caregiver Purpose Questions ID Code & Recording Please confirm that you consent to have our conversation recorded. What are the first three letters of your mother’s maiden name? What are the two digits of your day of birth? What are the last two digits of your phone number? What does “providing support” mean to you? What does supporting someone with an SCI mean to you? This is often referred to as caregiving. What does caregiving mean to you? Research Priorities What does a typical day look like for you as a you as someone who supports someone with an SCI? What area of your life do you feel you need the most support in? If an intervention were to be developed to support you, what would you want that intervention to support you in? Outcomes In a typical day, what are some of the positive things that you experience related to providing support to someone with an SCI? Of the positive things that you experience related to providing support to someone with an SCI, which is the most meaningful to you? On a typical day, what are some of the negative things that you experience related to providing support to someone with an SCI? Of the negative things that you experience related to providing support to someone with an SCI, which is the most meaningful or concerning to you? Behaviours What are some of the things that you do that bring about positive experiences in your life? - Can you tell me more? - Is there any behaviour that stands out for you? What are some of the things that you do that bring about negative experiences in your life? - Can you tell me more? 222 - Is there any behaviour that stands out for you? Barriers and Facilitators Can you tell me about a situation that might influence your caregiver to perform this behaviour? Can you tell me about a situation that might influence your caregiver not to perform this behaviour? COM-B Probes: - Capability (Physical) o Do you have the necessary skills to carry out this behaviour? o Are you physically able to carry out this behaviour? - Capability (Psychological) o Do you know how to carry out this behaviour? - Opportunity (Physical) o Are there any factors in your home or work environment for example that might influence you to perform this behaviour? o Are there any competing roles or tasks that might prevent you from carrying out this activity? o Do you feel like you have time to perform this behaviour? o Do you feel like you have what you need to perform this behaviour? - Opportunity (Social) o Do you feel like others support you in performing this behaviour?  Who supports you? o Do you feel like you lack support in performing this behaviour? o Do you feel performing this behaviour aligns with your role as a someone who provides support to someone with an SCI? o Do you think of yourself as someone who performs this behaviour? - Motivation (Automatic) o What are your feelings about carrying out this behaviour? - Motivation (Reflective) o Do you plan this behaviour? o Do you feel confident carrying out this? o Do you feel that you are rewarded in any way for carrying out this behaviour? 223 o Do you feel as though you are motivated to carry out this behaviour? o What impact do you feel that carrying out this behaviour might have to either yourself or others? Intervention If there were an ideal intervention to support you in enhancing the positive experiences and reducing the negative experiences of caregiving, what would that look like? - What would the overall intervention aim to do? - In what format, might the intervention be delivered? - Who would deliver the intervention? Care Receiver: Purpose Questions ID Code & Recording Please confirm that you consent to have our conversation recorded. What are the first three letters of your mother’s maiden name? What are the two digits of your day of birth? What are the last two digits of your phone number? What does providing support mean to you? What does receiving support mean to you? This is often referred to as caregiving. What does caregiving mean to you? Research Priorities What does a typical day look like for the person who supports you? What area of that person’s life do you feel they need the most support in? If an intervention were to be developed to support the person who supports you, what would you want that intervention to support that person in? Outcomes In a typical day, what are some of the positive things that you think the person who supports you experiences related to providing support? Of the positive things that person experiences related to providing support, what do you think is the most meaningful for them? In a typical day, what are some of the negative things that the person who supports you experiences related to providing support? Of the negative things that person experiences related to providing support, what do you think is the most meaningful or concerning for them? 224 Behaviours What are some of the things that the person who supports you does that might bring about positive experiences in their lives? - Can you tell me more? - Is there any behaviour that stands out for you? What are some of the things that the person who supports you does that might bring about positive experiences in their lives? - Can you tell me more? - Is there any behaviour that stands out for you? Barriers and Facilitators Can you tell me about a situation that might influence the person who supports you to perform this behaviour? Can you tell me about a situation that might prevent the person who supports you from performing this behaviour? COM-B Probes: - Capability (Physical) o Do they have the necessary skills to carry out this behaviour? o Are they physically able to carry out this behaviour? - Capability (Psychological) o Do they know how to carry out this behaviour? - Opportunity (Physical) o Are there any factors in your home or work environment for example that might influence them not to perform this behaviour? o Are there any competing roles or tasks that might prevent them from carrying out this activity? o Do you feel like they have time to perform this behaviour? o Do you feel like they have what they need to perform this behaviour? - Opportunity (Social) 225 o Do you feel like others support them in performing this behaviour?  Who supports them? o Do you feel like they lack support in performing this behaviour? o Do you think that they feel performing this behaviour aligns with their role as someone who supports you? o Do you they think of themselves as someone who performs this behaviour? - Motivation (Automatic) o What are their feelings about carrying out this behaviour? - Motivation (Reflective) o Do they plan this behaviour? o Do they feel confident carrying out this? o Do they feel that they are rewarded in any way for carrying out this behaviour? o Do they feel as though you are motivated to carry out this behaviour? o What impact do you think they feel that carrying out this behaviour might have on either themselves, yourself or others? Intervention If there were an ideal intervention to support the person who supports you in enhancing the positive experiences and reducing the negative experiences of providing support, what would that look like? - What would the overall intervention aim to do? - In what format, might the intervention be delivered? - Who would deliver the intervention? Closing Comments: Thank you so much for participating in this interview. I would be happy to send you a summary of the results when we have finished the analysis if you would like. What is the best way that I could send that to you? Do you have any further questions about the interviews or the study? If you do have any further questions I can provide you with our lab’s email and Dr. Gainforth’s phone number again. Email: abc.lab@ubc.ca Phone: (250) 807–9352 226 B.2 TDF Coding Manual TDF Domain Coding Rules 1. Knowledge (Know) (An awareness of the existence of something) • Knowing whether or not supports exist • Having sought out something or not 2. Skills (Skills) (An ability or proficiency acquired through practice) • Having the ability to do X • lacks capacity to engage in behaviour (i.e., give support) 3. Social/Professional Role and Identity (SPRI) (A coherent set of behaviours and displayed personal qualities of an individual in a social or work setting) • Putting everyone before yourself because you don’t think you have a choice (there is no decision) • Prioritizing others needs over your own (related to a person’s character) • Someone’s nature • Providing emotional support to family, etc. 4. Beliefs about Capabilities (BCap) (Acceptance of the truth, reality, or validity about an ability, talent, or facility that a person can put to constructive use) • Only refers to the person who is engaging in the behaviour, not person with SCI o If it directly relates to SCI, code ECR, if refers to THOUGHTS about person with SCI’s abilities code BCon • Self-efficacy is directly BCap o Self-confidence, Self-esteem 5. Optimism (Opt) (The confidence that things will happen for the best or that desired goals will be attained) 6. Beliefs about Consequences (BCon) (Acceptance of the truth, reality, or validity about outcomes of a behaviour in a given situation) • Implications for lifestyle (what would happen if X does not, or what would happen if X does, etc) • See emotions (fear/guilt/etc.) 7. Reinforcement (Rein) (Increasing the probability of a response by arranging a dependent relationship, or contingency, between the response and a given stimulus) • Others beliefs of your ability reinforce your inability to X • If behaviour has been done before and there was a + or - outcome, it affects future probability of engaging in behaviour 8. Intentions (Int) (A conscious decision to perform a behaviour or a resolve to act in a certain way) • Priorities, something you “have to do” • Wants/desire 227 9. Goals (Goals) (Mental representations of outcomes or end states that an individual wants to achieve) 10. Memory, Attention and Decision Processes (MADP) (The ability to retain information, focus selectively on aspects of the environment and choose between two or more alternatives) • Choosing between two different behaviours o I should take care of myself but x, y, z are piling up • If a caregiver “forgets” to do X for themselves because of the SCI 11. Environmental Context and Resources (ECR) (Any circumstance of a person's situation or environment that discourages or encourages the development of skills and abilities, independence, social competence, and adaptive behaviour) • “It’s [context of SCI] is all on me” o Related to unchangeable things due to injury • Money • Help from others • “Support group” 12. Social influences (SI) (Those interpersonal processes that can cause individuals to change their thoughts, feelings, or behaviours) • Behaviour/interactions with the person receiving support • “It’s not normal” → social norms • Stigma • Being forgotten • Being told something from someone else that makes you feel X • [Socially unacceptable to] not engage in behaviour because [person w SCI] is physically limited/or cant o If associated with role as partner/parent also code SPRI • Your belief about what others perceive • Being reminded by others/encouraged • Working together/cooperation 13. Emotion (Emo) (A complex reaction pattern, involving experiential, behavioural, and physiological elements, by which the individual attempts to deal with a personally significant matter or event) • Anger (from self) • Exhaustion • Lack of privacy/invasion of space • Guilt (survivor guilt) • Emotional regulation behaviours • Lack of control/Helplessness • If guilt or stress is discussed in relation to the fear of a negative outcome (e.g., I didn’t work because I was afraid something would happen while I was away), also code BCon 14. Behavioural Regulation (BReg) • Coping strategy • Any strategy aimed at promoting a behaviour 228 (Anything aimed at managing or changing objectively observed or measured actions) o E.g., Planning/scheduling, setting alarms/reminders o Planning on how to carry out intent 229 B.3 TDF Domain Themes: Accessing Supports and Resources TDF Domain Theme Theme definition Sample Quote Environmental Context and Resources Time and resources Time, costs, and, and availability associated with accessing resources such as counselling or care-aids (B, F) Therapy is expensive and a lot of people don't have benefits and a lot of people don't have workers comp (B) (Support Provider, Wife) My work has benefits so that was another factor making it easier for me to go see a counsellor. I didn't have to worry about paying for it. Um, and then I was on disability for quite a while from work and so they've also offered to help with paying for counselling sessions until I'm back full time. So that's been another factor that’s helped. Um, just don't have to worry about the financial burden of it. I can just go and take advantage of the therapy and not worry about it (F) (Support Provider, Husband) Social Influences Encouragement or discouragement from others Feeling pushed or motivated by others to access or not access resources (B, F) um, [my wife] influenced me a fair bit because she's been before, and she started seeing a counsellor quite soon after her accident before I did, and then when I started to get depressed she was definitely recommending it as something I should try and (F) (Support Provider, Husband) so if someone had been there sooner reinforcing that point more, I think that would've been good (F) (Support Provider, Husband) 230 Stigma or feelings of burden Perceived negative perceptions or feelings of being burdensome due to the need for support (is stigma or emotions) (B) I guess like, maybe in the beginning during feeling like a failure like doing that [seeing a therapist] would be failing because I should be able to handle it without having to... Without having to talk to somebody about whatever. Which again, doesn't make you a weak person to go to therapy, but it's kind of that stigma (B) (Support Provider, Wife) Um but then maybe even if he really wanted to um he --- didn’t want to maybe show that um like he wanted to be strong for me right so maybe he didn’t want to show that um there was a weakness because then it wouldn’t be helpful for me (B) (Person with SCI, Daughter Intentions Knowing you need it A “breaking point” or urge to make changes (F) I just needed to make a change, I knew I did. I had these kids who were dependent on me. So I just, I don't know I just made the decision and I just did. I needed to do this. (F) (Support Provider, Wife) I think its important if you need help you just gotta go get it. If its there take advantage of it. (F) (Support Provider, Husband) Disinterest Lack of interest in available opportunities for support (B) And I'm not a super get out there and meet type or meet people type of person anyways so its hard for me to meet people and talk to them (B) (Support Provider, Husband) [Counselling] was never really something that I wanted to try or was really open to in the past (B) (Support Provider, Husband) 231 Beliefs about Consequences Outcomes of Support Acknowledging the benefits or perceived outcomes of accessing support but yeah I think [having care-aids] is really necessary to have other people just to change the dynamic in the house (F) (Support Provider, Sister-in-Law) [I didn’t want to ask for help] yeah just because I didn't want to you know add to their worry and and like he'll we --- [My daughter] in particular like [my son with spinal cord inury's] youngest younger sister um like she's already uh she like I say she's dealing with anxiety now since the accident and that sort of thing so I don't want to add to that for her (B) (Support Provider, Mother) 232 B.4 TDF Domains: Providing Care TDF Domain Theme Theme definition Sample Quote Environmental Context and Resources Resources to learn how to provide support Available resources to support training and learning about providing practical support to someone with an SCI. (B, F) There's a few things on YouTube and stuff like how to dress a quadriplegic. It's tough because you just don't know (F) (Support Provider, Husband) There was literally nobody like you were discharged from the hospital and they said basically you know don't let the door hit you on the way out. Type of attitude. There was a couple of people that phoned and did some follow up but it was really poor and it was just no it was non-existent (B) (Support Provider, Husband) Skills Physical Capability The ability to provide practical support to someone with an SCI (B,F) She's physically not capable of doing some of it (B) (Person with SCI, Husband) If someone had been there sooner reinforcing that point more, I think that would've been good (F) (Support Provider, Husband) Her personal care is very um difficult there there were large stretches where I did do it on my own um at first and it it just was really really wearing and damaging to me personally and so I can't go there anymore like a moment like yesterday where I do do the whole shower and and uh dressing and all that myself I go very slowly now and I'm very careful and I use all of my strength not hurt myself but its not a good practice (B) (Support Provider, Sister-in-Law) 233 Previous Life Experiences Perceived negative perceptions or feelings of being burdensome due to the need for support (is stigma or emotions) (B) Uh since I'm dealing with uh with elderly, we always have in-service when it comes to how to provide proper care for that everything that is uh, every uh. most of the time we have in-service that's related for elderly that I can apply as well with my boyfriend, because it's medical right? (F) (Support Provider, Partner) But of course my wife had the knowledge behind her to do all this stuff Fortunately, like I said my wife was a nurse she knew how to do all this stuff. (F) (Support Provider, Husband) Social Professional/Role and Identity The perception that providing support is congruent with their role as someone in a familial or romantic relationship with someone with an SCI. probably he felt just being there physically you know --- and practically for me and the kids was enough. (F) (Person with SCI, Wife) But to be helping me to get in and out of bed, or to get dressed, or to get on the commode, or do those sorts of things. Those are physical things and are quite demanding when you are looking at someone who has physical issues like she has. And you know, she... I'll say to her "don't do it", and she'll do it because she's like that. (F) (Person with SCI Husband) 234 B.5 TDF Domains: Intimacy TDF Domain Theme definition Sample Quote Emotions A complex reaction pattern, involving experiential, behavioural and physiological elements, by which the individual attempts to deal with a personally significant matter or event. the first couple months like it was very unpredictable and that was something that every time if she had a bowel, a bowel accident or something that was really emotionally draining on both of us. (B) (Support Provider, Husband) And a lot of it is me, like I'm just like, you know what I'm fine just honestly not doing anything, because for me it's almost more hurtful to just like keep trying stuff. Because it's not normal, and it's just more working that you have to do the work for. If that makes sense (B) (Support Provider, Wife) You're exhausted. When you're the person who has to do everything, especially when there's kids involved, you're exhausted, you're so tired. At the end of the day, and especially when you have to put your husband to bed and deal with catheters and all that, you don't want to. You're exhausted. And even though it sounds nuts to say it, it's just one more thing that you have to do, and you just kind of come to the point where you're like, you just don't want to (B) (Support Provider, Wife) Social Influences Those interpersonal processes that can cause an individual to change their thoughts, feelings or behaviours. We're both pretty open to working with what we've got now which is nice (B) (Support Provider, Husband) 235 that's what he's the most angry about and he blames me for taking that away (B) (Support Provider, Wife) Environmental Context and Resources The perception that providing support is congruent with their role as someone in a familial or romantic relationship with someone with an SCI. Um, its gotten pretty good now. She hardly ever has any bowel issues and she's getting intermittent catheterization and getting Botox on her bladder which helps to stop leaks when she doesn't want them. (F) (Person with SCI, Husband) actually in the beginning what was hard was the whole getting used to the bathroom routine. That was really hard for both of us. At first, managing bowel and bladder was a huge challenge which I'm sure you hear all the time from people (B) (Support Provider, Husband) We were at rehab and we saw a sexual health counsellor or I don't know what exact title was, but she was there to help us with the sexual health part of it. And she gave us different tips and things to know about spinal cord injury and how it changes obviously the way you can experience sexual pleasures and that kind of thing (F) (Support Provider, Husband) 236 B.6 Integrated Knowledge Translation Process Research Stage Type of Activity Activity Description Conceptual Design Discussion (Video Calls) The research question and methodology was developed in partnership with broader team including RM, CM, TC, SC, and HG Recruitment Developing & distributing recruitment materials RM created templates for recruitment posters, social media recruitment, and consent forms. All materials were reviewed and edited by HG. CM, TC, and SC reviewed, edited, and approved recruitment materials and procedures. Once approved, CM, TC and SC distributed recruitment materials. Data Collection Conducting interviews RM scheduled and recorded all 15 conversations. Data Analysis, Interpretation, Discussion (Video Call) RM conducted inductive analysis of outcomes and behaviours. RM and VL extracted and independently coded barriers and facilitators RM conducted inductive analysis of themes within TDF Domains RM presented all data to HG, VL, CM, TC, and SC. The team co-interpreted the data and made revisions. . Dissemination Discussion (Video call) RM and HG will facilitate conversation with CM, TC, and SC to co-develop dissemination strategies and identify any future next steps 237 Supplementary Materials for Study 3 C.1 Systematic Search Methods Search Terms (Reporting AND Intervention) AND (Guidance OR Checklist OR Criteria OR Taxonomy OR Guidelines) ti Eligibility criteria Articles were eligible to be included if they described guidance for reporting or characterizing one or more phases of the intervention development process including 1) theoretical rationale, 2) mechanism of action, 3) intervention content, 4) mode of delivery, or 5) development approach. These phases were selected based on recommendations of the BCW (Michie et al., 2014) and MRC guidance (Moore et al., 2015). As guidance for reporting on IKT does not exist, articles describing recommendations for reporting IKT were eligible to be included. Articles were not included if an updated version same tool had been published, if the tool was context-specific, or if it was not published in English. Screening The title and abstract of all citations were screened by the first author based on relevance to the eligibility criteria. All citations were downloaded from all databases and duplicates were removed. All remaining citations were screened by title then abstract based on the eligibility criteria. All relevant full-text articles were reviewed after title and abstract screening to confirm eligibility. 238 Table 1. Search Definitions Intervention Development Phase Definition Theoretical Rationale A theoretical understanding of the likely process of change i.e., what changes are expected, and how change is to be achieved (Craig et al., 2008). Mechanism of Action Processes through which a behavior change technique affects behavior (Michie et al., 2017). Intervention Content An active component of an intervention designed to change behaviour (i.e., BCT) (Michie et al., 2013) Mode of Delivery An attribute of a behaviour change intervention delivery that is the physical or informational medium through which a behaviour change intervention is provided (Marques et al., 2021) Development Approach The whole process of intervention development documented in a book, website or journal article where authors explicitly offer a guide to undertaking intervention development (O’Cathain et al., 2019) Guidance Type Guideline a checklist, flow diagram, or structured text to guide authors in reporting a specific type of research, developed using explicit methodology (EQUATOR Network, n.d.) Taxonomy A classification system of intervention components with labels and standardized definitions (Michie et al., 2013) Recommendation a proposal for reporting without an established guideline 239 C.2 PRISMA Flow Diagram From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71. For more information, visit: http://www.prisma-statement.org/ 240 C.3 Results of Systematic Search The MEDLNE/Pubmed, CINAHL, and Embase search rendered 809, 416, and 380 results, respectively. After duplicates were removed, 930 articles remained. After title screening, 14 tools met the inclusion criteria. A total of nine tools met the inclusion criteria after abstract screening and nine were included for analysis after full-text review (Albrecht et al., 2013; Duncan et al., 2020; Hardcastle et al., 2017; Hoffmann et al., 2014; Michie et al., 2013; Möhler et al., 2015; O’Cathain et al., 2019; Schulz et al., 2010; Sidani et al., 2020). Four tools were identified in subsequent searches of the Human Behaviour Change Project repository (Johnston et al., 2020; Marques et al., 2021; Michie & Prestwich, 2010). Two articles were included from existing knowledge of available tools (Cane et al., 2012; Conn, 2012). Two reporting recommendations were included for analysis from the IKTRN repository (Gainforth et al., 2020; Hoekstra et al., 2020). A search of the reference lists of all included tools identified two additional tools (Dombrowski et al., 2016; Kok et al., 2016). A completed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram is located in the supplementary files (Moher et al., 2010). Systematic Search Reference List Albrecht, L., Archibald, M., Arseneau, D., & Scott, S. D. (2013). Development of a checklist to assess the quality of reporting of knowledge translation interventions using the Workgroup for Intervention Development and Evaluation Research (WIDER) recommendations. Implementation Science: IS, 8, 52. https://doi.org/10.1186/1748-5908-8-52 Cane, J., O’Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7, 37. https://doi.org/https://doi.org/10.1186/1748-5908-7-37 Conn, V. S. (2012). Unpacking the Black Box: Countering the Problem of Inadequate Intervention Descriptions in Research Reports. In Western Journal of Nursing Research (Vol. 34, Issue 4, pp. 427–433). https://doi.org/10.1177/0193945911434627 Dombrowski, S. U., O’Carroll, R. E., & Williams, B. (2016). Form of delivery as a key ‘active ingredient’ in behaviour change interventions. British Journal of Health Psychology, 21(4), 733–740. https://doi.org/https://doi.org/10.1111/bjhp.12203 Duncan, E., O'Cathain, A., Rousseau, N., Croot, L., Sworn, K., Turner, K. M., Yardley, L., & Hoddinott, P. (2020). Guidance for reporting intervention development studies in health research (GUIDED): an evidence-based consensus study. BMJ Open, 10(4), e033516. https://doi.org/10.1136/bmjopen-2019-033516 Gainforth, H. L., Hoekstra, F., McKay, R., McBride, C. B., Sweet, S. N., Martin Ginis, K. A., Anderson, K., Chernesky, J., Clarke, T., Forwell, S., Maffin, J., McPhail, L. T., Mortenson, W. Ben, Scarrow, G., Schaefer, L., Sibley, K. M., Athanasopoulos, P., & Willms, R. (2020). Integrated Knowledge Translation Guiding Principles for Conducting 241 and Disseminating Spinal Cord Injury Research in Partnership. Archives of Physical Medicine and Rehabilitation. https://doi.org/https://doi.org/10.1016/j.apmr.2020.09.393 Hardcastle, S. J., Fortier, M., Blake, N., & Hagger, M. S. (2017). Identifying content-based and relational techniques to change behaviour in motivational interviewing. Health Psychology Review, 11(1), 1–16. https://doi.org/10.1080/17437199.2016.1190659 Hoekstra, F., Mrklas, K. J., Khan, M., McKay, R. C., Vis-Dunbar, M., Sibley, K. M., Nguyen, T., Graham, I. D., & Gainforth, H. L. (2020). A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature. In Health Research Policy and Systems (Vol. 18, Issue 1, p. 51). https://doi.org/10.1186/s12961-020-0544-9 Hoffmann, T. C., Glasziou, P. P., Boutron, I., Milne, R., Perera, R., Moher, D., Altman, D. G., Barbour, V., Macdonald, H., Johnston, M., Lamb, S. E., Dixon-Woods, M., McCulloch, P., Wyatt, J. C., Chan, A.-W., & Michie, S. (2014). Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ : British Medical Journal, 348, g1687. https://doi.org/10.1136/bmj.g1687 Johnston, M., Carey, R. N., Connell Bohlen, L. E., Johnston, D. W., Rothman, A. J., de Bruin, M., Kelly, M. P., Groarke, H., & Michie, S. (2021). Development of an online tool for linking behavior change techniques and mechanisms of action based on triangulation of findings from literature synthesis and expert consensus. Translational Behavioral Medicine, 11(5), 1049–1065. https://doi.org/10.1093/tbm/ibaa050 Kok, G., Gottlieb, N. H., Peters, G.-J. Y., Mullen, P. D., Parcel, G. S., Ruiter, R. A. C., Fernández, M. E., Markham, C., & Bartholomew, L. K. (2016). A taxonomy of behaviour change methods: an intervention mapping approach. Health Psychology Review, 10(3), 297–312. Marques, M., Carey, R., Norris, E., Evan, F., Finnerty, A., Hastings, J., Jenkins, E., Johnston, M., West, R., & Michie, S. (2021). Delivering Behaviour Change Interventions: Development of a Mode of Delivery Ontology [version 2; peer review: 2 approved]. Wellcome Open Research, 5(125). https://doi.org/10.12688/wellcomeopenres.15906.2 Michie, S., & Prestwich, A. (2010). Are interventions theory-based? Development of a theory coding scheme. In Health Psychology (Vol. 29, Issue 1, pp. 1–8). https://doi.org/10.1037/a0016939 Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J., & Wood, C. E. (2013). The Behavior Change Technique Taxonomy (v1) of 93 Hierarchically Clustered Techniques: Building an International Consensus for the Reporting of Behavior Change Interventions. Annals of Behavioral Medicine, 46(1), 81–95. https://doi.org/10.1007/s12160-013-9486-6 242 Möhler, R., Köpke, S., & Meyer, G. (2015). Criteria for Reporting the Development and Evaluation of Complex Interventions in healthcare: revised guideline (CReDECI 2). Trials, 16, 204. https://doi.org/10.1186/s13063-015-0709-y O’Cathain, A., Croot, L., Sworn, K., Duncan, E., Rousseau, N., Turner, K., Yardley, L., & Hoddinott, P. (2019). Taxonomy of approaches to developing interventions to improve health: a systematic methods overview. In Pilot and feasibility studies (Vol. 5, Issue 1, p. 41). https://doi.org/10.1186/s40814-019-0425-6 Schulz, R., Czaja, S. J., McKay, J. R., Ory, M. G., & Belle, S. H. (2010). Intervention taxonomy (ITAX): describing essential features of interventions. In American Journal of Health Behaviour (Vol. 34, Issue 6, pp. 811–821). https://doi.org/10.5993/AJHB.34.6.15 Sidani, S., Fox, M., & El-Masri, M. M. V. O.-34. (2020). Guidance for the Reporting of an Intervention’s Theory. Research and Theory for Nursing Practice, 34(1), 35–48. https://doi.org/10.1891/1541-6577.34.1.35 243 C.4 Selected Reporting Guidance for Associated Intervention Development Phase Development Approach Phase of Intervention Development Applied Reporting Guidance Co-Development (IKT) Partnership strategies Review of review of research partnerships (Hoekstra et al., 2020) Partnership principles IKT Guiding Principles (Gainforth et al., 2020) Theory-Based (Behaviour Change Wheel (Michie et al., 2014)) Stage 1. Understand the behaviour Mechanisms of Action Theoretical Domains Framework (TDF) (Cane et al., 2012) Stage 2. Identify intervention options Intervention functions and policy categoriesa Behaviour Change Wheel (BCW) (Michie et al., 2014)a Stage 3. Identify intervention content and implementation options Intervention Content Behaviour Change Technique Taxonomy v 1 (BCTTv1) (Michie et al., 2013) Content and Relational Techniques (Hardcastle et al., 2017) Intervention Delivery Template for Intervention Description and Replication (TIDieR; 2014) (Hoffmann et al., 2014) Mode of Delivery Mode of Delivery Ontology (Marques et al., 2021) Overall Guiding Reporting Framework Guidance for reporting intervention development studies in health research (GUIDED) (Duncan et al., 2020) aIntervention functions and policy categories and associated definitions are specific to the BCW framework 244 C.5 Partner Details and Expertise Partner name Organization Role Dr. Christopher McBride SCI BC Research partner through all phases of research Teren Clarke SCI AB Research partner through all phases of research Shelia Casemore SCI Ontario Research partner through all phases of research Chelsea McEvoy Wheel Love Expert consultant in intervention development Dr. Shane Sweet McGill University Expert consultant intervention development Dr. Sean Locke University of British Columbia Expert consultant intervention development Connie Davis Centre for Collaboration, Motivation, and Innovation Expert consultant intervention development 245 C.6 Timetable of Partnership Strategies and Guiding Principles Phase of intervention development Partnership activity Partnership strategies (Hoekstra et al., 2020) Guiding principle targeted by partnership strategy (Gainforth et al., 2020) Overall Research Body Identifying research question First video conference meeting to co-determine research priorities and establish research methodology (2016) 1a. Initiate partnership and identify the team members; the partnership can be initiated by researchers or stakeholders; researchers can use targeted or open strategies to identify the stakeholders 1b. Work together to develop and define norms, rules and expectations in terms of timelines and tasks; this includes defining the level of stakeholders’ engagement, roles and commitment 4a. stakeholder engagement in identifying or refining the ‘research questions’ Partners develop and maintain relationships based on trust, respect, dignity, and transparency. Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners can meaningfully benefit by participating in the partnership. Developing study protocol Video conference meeting to co-establish overarching research methodology (2017) 4a. Strategies include, but are not limited to, stakeholder engagement in identifying or refining the ‘research questions’, stakeholder engagement in development the ‘research protocol’, stakeholder engagement developing or refining ‘research instruments’ (e.g., questionnaires, interview guides) and stakeholder engagement in development of participant ‘information material’ (e.g., informed consent) Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. 246 Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Scoping Review Data analysis and/or interpretation Video conference meeting presenting scoping review results, co-interpreting research findings and determining presentation of results (2018) 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting literature review), stakeholder engagement in data analysis, and interpretation of findings Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Dissemination of research findings Co-authorship of scoping review manuscript (2018) 6a. Strategies include, but are not limited to, stakeholder engagement in ‘writing reports or scientific papers’ (e.g., stakeholder is co-author Partners share in decision-making 247 on a scientific paper), stakeholder engagement in ‘presenting findings’ to academic and community audiences, stakeholder engagement in a ‘developing and implementation action plan’ to ensure findings are used, and stakeholders use the findings to create change Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners can meaningfully benefit by participating in the partnership. Interview Study Developing study protocol Video conference meeting to refine study and recruitment materials for interview study (2017) 4a. Strategies include, but are not limited to, stakeholder engagement in identifying or refining the ‘research questions’, stakeholder engagement in development the ‘research protocol’, stakeholder engagement developing or refining ‘research instruments’ (e.g., questionnaires, interview guides) and stakeholder engagement in development of participant ‘information material’ (e.g., informed consent) Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Developing study protocol/data collection Series of emails between partners the first author establishing 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting Partners share in decision-making 248 recruitment process (2017) literature review), stakeholder engagement in data analysis, and interpretation of findings Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Data analysis and/or interpretation Presentation of preliminary findings and co-interpretation of results (2019) 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting literature review), stakeholder engagement in data analysis, and interpretation of findings Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. 249 Partners respect the practical considerations and financial constraints of all partners. Data analysis and/or interpretation Presentation of final findings and co-interpretation of results (2020) 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting literature review), stakeholder engagement in data analysis, and interpretation of findings Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners can meaningfully benefit by participating in the partnership. Co-Development of Intervention Identifying research question/ Developing study protocol Presentation of synthesized results of scoping review and interview and co-interpretation. Co-decision making for intervention development (2019) 4a. Strategies include, but are not limited to, stakeholder engagement in identifying or refining the ‘research questions’, stakeholder engagement in development the ‘research protocol’, stakeholder engagement developing or refining ‘research instruments’ (e.g., questionnaires, interview guides) and stakeholder engagement in development of participant ‘information material’ (e.g., informed consent) Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. 250 Partners respect the practical considerations and financial constraints of all partners. Developing study protocol Expert and partner feedback on co-developed intervention manual (2020-2021) 4a. Strategies include, but are not limited to, stakeholder engagement in identifying or refining the ‘research questions’, stakeholder engagement in development the ‘research protocol’, stakeholder engagement developing or refining ‘research instruments’ (e.g., questionnaires, interview guides) and stakeholder engagement in development of participant ‘information material’ (e.g., informed consent) Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Developing study protocol Video conference meeting to refine study and recruitment materials for interview study (2020) 4a. Strategies include, but are not limited to, stakeholder engagement in identifying or refining the ‘research questions’, stakeholder engagement in development the ‘research protocol’, stakeholder engagement developing or refining ‘research instruments’ (e.g., questionnaires, interview guides) and stakeholder engagement in development of participant ‘information material’ (e.g., informed consent) Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. 251 Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Data collection Series of emails between partners the first author establishing recruitment process (2020-2021) 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting literature review), stakeholder engagement in data analysis, and interpretation of findings Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners are flexible and receptive in tailoring the research approach to match the aims and context of the project. Partners address ethical considerations. Partners respect the practical considerations and financial constraints of all partners. Data analysis and/or interpretation Video conference meeting presenting final findings and co-interpretation of 5a. Strategies include, but are not limited to, stakeholder engagement in ‘data collection’ (e.g., recruitment of participants, study outcomes, conducting interviews, conducting Partners share in decision-making 252 results Upcoming (2021) literature review), stakeholder engagement in data analysis, and interpretation of findings Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners can meaningfully benefit by participating in the partnership. Dissemination of research findings Video conference meeting determine next steps for research and knowledge translation Upcoming (2021) 6a. Strategies include, but are not limited to, stakeholder engagement in ‘writing reports or scientific papers’ (e.g., stakeholder is co-author on a scientific paper), stakeholder engagement in ‘presenting findings’ to academic and community audiences, stakeholder engagement in a ‘developing and implementation action plan’ to ensure findings are used, and stakeholders use the findings to create change Partners share in decision-making Partners foster open, honest, and responsive communication. Partners recognize, value, and share their diverse expertise and knowledge. Partners can meaningfully benefit by participating in the partnership. 253 C.7 Expert Interview Guide Expert Interview Guide Hello, thank you for speaking with me about this intervention. Can you please confirm that you consent to have this conversation audio recorded? The aim of this discussion is to understand, in your expert opinion, how we could tailor the intervention manual that you received to be better suited for family support providers of people with SCI. We also want to ensure that this intervention could be delivered by community-based organizations To help us tailor the intervention, we are using the APEASE criteria. The APEASE criteria are a set of criteria used to make context-based decisions on the selection of intervention strategies based on the Affordability, Practicability, Effectiveness/cost-effectiveness, Acceptability, Safety/side-effects, Equity of the intervention strategy. For our discussion, we will discuss whether you believe the intervention meets each of these criteria, your rationale, and come up with ways that we could change the intervention to address any violations to these criteria. After our discussion, I will take detailed notes based on the audio recording, and I will send the notes back to review to make sure I interpreted what you said right. I am also having these discussions with other experts in areas relevant to this research. Once I complete all the interviews, I will collect all of your recommendations and make changes to the intervention manual. You will be sent this revised manual along with an invitation to an online group discussion with the other experts that were interviewed. There are a few more things I need to tell you about the procedures of our discussion, but do you have any questions so far? Next, I would like to discuss how and if you would like to be identified in this study. This study will be a chapter in my PhD dissertation which is published by UBC and may be published in a peer-reviewed journal. • Would you like your name and/or role to be included in this chapter? • We may use quotes from interviews to help describe this co-development process or provide rationale for the decisions we made. o Would you like any quotes to be used from our discussion? o Would you like your name to be attached to any of these quotes? Regardless of how you choose to be identified, I will send you a draft of the dissertation chapter or manuscript. At this point you may make any changes, withdraw quotes, and reconsider how you wish to be identified in the writing before anything is submitted. 254 Another place that your comments may be identified is during the group discussion with other experts. Would you like your name to be attached to any recommendations that are discussed during the interview? If not, I can ensure that any recommendations you make remain non-identifiable. Finally, please know that you don’t need to respond to any questions you would prefer not to answer or discuss any topics you would prefer not to discuss. You can also withdraw from the study at any time. If you do choose to withdraw, you can decide what we do with the information you have provided up that point. We can either keep your information for analysis or remove your information completely. Role/Experience • First, do you mind telling me a bit about your experience with families who provide support for people with SCI? • What is your role related to the topic of this research? • About how long have you been in this role? Overview of the intervention Before I ask you any specific questions… • Do you have any questions about the intervention manual or anything that you would like to discuss? APEASE Criteria Affordability As I mentioned, the purpose of this discussion is to understand, in your expert opinion, how we could better tailor this intervention to be better suited for family support providers of people with SCI and how it could be more easily delivered in a community-based setting. First, I would like to discuss the affordability of this intervention. Affordability refers to how the intervention would fit within a given budget. Given that there is no specific budget for the delivery of this intervention, I would like you to imagine that it is being delivered by a community-based, non-profit organization with limited resources. • How affordable do you think the intervention is right now? • How do you think we could adjust this intervention so its delivery would be affordable in a community-based setting? • What specifically would you change to make this intervention more affordable? • What is your rationale for making this change? • How do you think this change would make the intervention affordable? APEASE Criteria Practicability Next, I would like to discuss how practical this intervention is or the practicability of the intervention. 255 What I mean by practicable is the extent to which the intervention can be delivered as it is designed, through the means that it is intended to the target population. For example, this intervention might be effective when it is delivered by a highly trained individual and when extensive resources are available. However, it might not be effective when delivered by community-based organizations where less training and resources are available. • As it is right now, how practicable do you think this intervention would be in a community-based setting? • How do you think that we could adjust this intervention so its delivery would be practicable in a community-based setting? • What specifically would you change to make this intervention more practicable? • What is your rationale for making this change? • How do you think this change would make the intervention practicable? APEASE Criteria Effectiveness and Cost-Effectiveness Next, I would like to discuss the effectiveness and cost-effectiveness of this intervention. By effectiveness I mean the amount of change we might see if this intervention was delivered in a real-world setting. By cost-effectiveness, I mean the ratio between effectiveness to cost. For example, if two intervention strategies are equally effective, you would select the intervention strategy that is most cost-effective. However, if one strategy is more effective but less cost-effective, then we would have to consider other aspects of the strategy like affordability. • As it is right now, how effective do you think this intervention would be in a community-based setting? • How cost-effective? • How do you think that we could adjust this intervention so its delivery would be effective in a community-based setting? • What specifically would you change to make this intervention more effective or cost-effective? • What is your rationale for making this change? • How do you think this change would make the intervention more effective? • More cost-effective? APEASE Criteria Next, I would like to discuss the acceptability of the intervention. Acceptability refers to how the intervention is considered to be 256 Acceptability appropriate by stakeholders, or people who have a vested interest in the intervention. Acceptability might look different to different stakeholders. Therefore, I am interested how appropriate this intervention is from your perspective based on your expertise. • As it is right now, how acceptable do you think this intervention would be in a community-based setting? • How do you think that we could adjust this intervention so it would be acceptable in a community-based setting? • What specifically would you change to make this intervention more acceptable? • What is your rationale for making this change? • How do you think this change would make the intervention more acceptable? APEASE Criteria Side-Effects/Safety Next, I would like to discuss the side-effects and safety of the intervention. By side-effects and safety, I mean any unwanted or unintended consequences that may arise as a result of the intervention. Even if the intervention is acceptable and effective, there still may be some negative consequences. • As it is right now, how safe do you think this intervention would be? • Can you think of any unwanted or unintended consequences that might result from this intervention? • How might you change the intervention to avoid these consequences? • What specifically would you change about the intervention? • What is your rationale for making this change? • How do you think this change would make the intervention safer or reduce negative side-effects? APEASE Criteria Equity Next, I would like to discuss how the equity of the intervention. Equity refers to disparities between standards of living, wellbeing, or health between different groups. I want to discuss the extent to which you think the intervention might increase or decrease these disparities. • How equitable do you think the intervention is? • How might you change the intervention to increase equity? • What specifically would you change about the intervention? • What is your rationale for making this change? • How do you think this change would make the intervention more equitable? 257 Additional Information • Beyond what we have already discussed, do you have any other thoughts about the intervention? • Are there any further changes you would like to make? • What is your rationale for making these changes? • What do you think these changes will specifically impact? Thank you so much for your input. I will make detailed notes based on this recording and I will email you the notes to review for accuracy. When I have completed the interviews with other experts, I will make all of the recommended changes to the intervention. Do you have any further questions? If you have any further thoughts that did not come up during our discussion, please feel free to email me via the email you received the intervention manual from (rhyann.mckay@ubc.ca). If you do email me, I will record your recommendations with the notes from your interview with your permission. 258 C.8 Behaviour Change Technique Theoretical Rationale BCT Definition (Michie et al., 2013) Link to Intervention Functions (Michie et al., 2014) Linked TDF Domains (Johnston et al., 2020) Additional Rationale 1.1 Goal Setting Set[ting] or agree[ing] upon a goal defined in terms of the behaviour to be achieved Enablement Intentions 1.2 Problem-Solving (including coping planning) Analy[zing] the factors influencing the behaviour and generat[ing] or select[ing] strategies that include overcoming barriers and/or increasing facilitators Enablement Beliefs about capabilities Behavioural Regulation Common and successful intervention approach across family support provider literature (McKay et al., 2020) 1.4 Action Planning Prompt[ing] detailed planning of performance of the behaviour (must include one of context, frequency, duration and intensity) Enablement No evidence of any TDF links 1.5 Review behavioural goal(s) Review behaviour goal(s) jointly with the person and consider modifying goal(s) or behaviour change strategy in light of achievement. This may lead to re-setting the same goal, a small change in that goal or setting a new goal instead of (or in addition to) the first, or no change. Enablement Goals 1.9 Commitment Ask the person to affirm or reaffirm statements indicating Enablement Incentivization Intentions* 259 commitment to change the behaviour Coercion Memory, Attention and Decision-Making Process* 13.2 Framing/Reframing Suggest[ing] the deliberate adoption of a perspective or new perspective on behaviour (e.g., its purpose) in order to change cognitions or emotions about performing the behaviour Persuasion Enablement Emotions* Relevancy to addressing emotional barriers and thought processes (Locke et al., 2019) 3.1 Social support (emotional) Advis[ing] on, arrang[ing] or provid[ing] social support (e.g., from friends, relatives, colleagues,’ buddies’ or staff) or non-contingent praise or reward for performance of the behavior. It includes encouragement and counselling, but only when it is directed at the behavior (includes ‘Motivational Interviewing’ and ‘Cognitive Behavioural ‘Therapy) Enablement No evidence of any TDF links Social support is indicated as a priority for family support providers of people with SCI (McKay et al., 2020) * indicates an inconclusive link 260 C.9 Outline of Final Intervention Strategies and Evidence Sources Session 1 Intervention Strategy BCT(Michie et al., 2013) Potential Content or Relational Technique (Hardcastle et al., 2017) Existing Evidence Source of Intervention Strategy 1. Ask participants about self-care activities they wished to change over the next week or two. 1.1 Goal Setting 5. Agenda mapping* 1. Open-ended questions 2. Affirmation 3. Reflective statements 4. Summary Statements 6. Review a typical day 7. Permission to provide information and advice 24. Emphasize autonomy BAP (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) 2. Prompt participants to identify and evaluate biased or unhelpful thoughts associated with their chosen self-care activity. 13.2 Framing/Reframing 22. Reframing* 1. Open-ended questions 2. Affirmation 3. Reflective statements 4. Summary Statements 7. Permission to provide information and advice 30. Normalising Brief Cognitive Reframing (Locke et al., 2019) 3. Ask participants to develop a specific plan. 1.4 Action Planning 33. Develop a change plan* 1. Open-ended questions 3. Reflective statements 12. DARN questions 24. Emphasize autonomy BAP (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) 4. Ask participants to identify potential barriers to their plan and come up with possible solutions. If the plan changed 1.2 Problem-Solving (including coping planning) 20. Troubleshooting* 1. Open-ended questions 3. Reflective statements 24. Emphasize autonomy BAP/PST 261 significantly, step 3 was repeated. 5. Ask participants to evaluate their confidence in the plan on a scale of 1 to 10. If confidence was rated lower than 7, step 4 was repeated. N/A 11. Confidence ruler* 1. Open-ended questions 2. Affirmation 3. Reflective statements 4. Summary Statements 7. Permission to provide information and advice 24. Emphasize autonomy 30. Normalising BAP (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) 6. Elicit a commitment statement by asking participants to repeat their entire plan. 1.9 Commitment 12. DARN questions* 1. Open-ended questions 2. Affirmation 3. Reflective statements 4. Summary Statements 30. Normalising BAP (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) Session 2 1. Ask participants to discuss progress with their goal and discuss next steps (e.g., set a new goal, revise the previous goal) 1.5 Review behaviour goal(s) 38. Review outcome goal* 1. Open-ended questions 2. Affirmation 3. Reflective statements 4. Summary Statements 24. Emphasize autonomy 30. Normalising BAP (Dunn et al., 2001; Gutnick et al., 2014; Miller & Rollnick, 2012) 2. Repeat steps from Session 1. Interpersonal Approach 262 Adherence to the spirit of MI. 3.1 Social support (unspecified) Use: 1. Open-Ended Questions, 2. Affirmations, 3. Reflective Statements, and 4. Summary statements throughout and where applicable. MI (Miller & Rollnick, 2012) *indicates primary content or relational technique for the intervention strategy 263 C.10 Preliminary Intervention Standard of Practice with Proposed Revisions Intervention Standard of Practice SESSION 1 Spirit of Motivational Interviewing (PACE) [BCT: 3.3 Social support (unspecified)] This intervention is intended to be carried out with the “Spirit” of Motivational Interviewing (MI)The "Spirit" of Motivational Interviewing (MI). The spirit of MI is a particular “way of being” that should be the foundation of every MI conversation. The spirit of MI includes four key elements: - Partnership or collaboration between the helper and client o Remember that the client is the expert of their own experience and we must respect and honor their experiences and perspectives. - Acceptance o Absolute Worth  “Unconditional positive regard” against an attitude of judgment and placing conditions on worth. o Accurate Empathy  Taking an active interest in attempting to understand the client’s internal perspective on their experience o Autonomy Support  Acknowledge a person’s freedom to choose and believe they have what is needed to do so. o Affirmation  Acknowledge a person’s strengths and efforts and not about what is “wrong”. - Compassion o Commit the welfare and best interests of the client by actively promoting their welfare and giving priority to their needs - Evoking o Drawing out the client‘s ideas about change; attempt to evoke and strengthen motivations to change that already exist. 264 Introduction: 1. Greet person, make small talk 2. Explain the intervention procedure We are here today to talk about some of the reasons it might be difficult to participate in social activities and come up with a plan that might help you overcome some of those barriers. Brief Action Planning (BAP): Identify Goal (Cole et al., 2016; Gutnick et al., 2014) [BCT: 1.1 Goal Setting (behaviour)]: Section Goals:  Identify and understand a behavioural goal 3. Identify behavioural goal: As I’m sure you know better than anyone; a spinal cord injury doesn’t just affect the person who had the injury, it affects everyone around them. Often, something that becomes more difficult for people after someone they care about has had an SCI is participating in day-to-day activities such as going out with friends, exercising, or things you do to take care of yourself. - Ask questions about the person’s context related to participation activities. E.g.:  What does a typical day look like to you  How do you feel about the activities that you are participating in right now that are outside of support that you might be providing to _______? - Identify a target behaviour  What is something that you would like to change?  Is there any activity that you are not participating in as much as you would like? Possible relational and content techniques: 5. Agenda mapping, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 6. Review a typical day, 24. Emphasize autonomy 265 b. Have an idea: go to Step 4 c. Individuals who want or need suggestions: Offer Behavioural Menu i. Ask permission: Would you like me to share some ideas that others have used or that might fit for your situation? ii. Then share two to three ideas ALL AT ONCE: - The ideas are relevant to their goal, not too specific, and varied. - Use the last idea to prompt one of their own. Some things you might try are ________, _______ or maybe you have an idea of your own that occurs to you now. iii. Ask what they want to do: Do any of these ideas work for you? Possible relational and content techniques: 7. Permission to provide information and advice, 24. Emphasize autonomy Reframing (Locke et al., 2019) [BCT: 13.2 Framing/reframing]: Section Goals:  Identify and understand the barrier to participating in their chosen activity (cognitive error)  Evaluate the thought  Reframe the thought 266 4. Explain reframing and ask permission: Something that can often get in the way of us doing things such as _______ is the way that we think about certain activities. Sometimes negative or unhelpful thoughts that are not always accurate prevent us from carrying out our plans. Would you be open to speaking with me about the way you might be thinking about __________? - If participants do not agree, move to step 9 Possible relational and content techniques: 7. Permission to provide information and advice, 30. Normalising 5. Identify the root cause behind why they’re to engage in their chosen activity: With permission: When you think about _______ what gets in the way of you actually deciding to go? Everyone has these types of thoughts from time to time. They’re normal. It’s nothing to be ashamed of, but it is something to be aware of as they usually cause us to decide not to things that we might really want to do or even should do. Follow-up questions: Note for this section: Accurate Empathy: Ensuring you are conveying accurate empathy and normalizing a persons behaviour can be helpful in this section. Unhelpful thoughts can act as a defense mechanisms to protect our self-esteem. For example, it may be easier to tell ourselves that we’re too busy to [insert behaviour] (an external reason) rather than we lack the motivation (which may feel like a personal failing). Examples you can say: - It sounds like it has been a challenge to find a time to do ______ that works for you - Everyone has these types of thoughts from time to time. They’re normal. It’s nothing to be ashamed of, but it is something to be aware of as they usually cause us to decide not to do ________. Note: Often the reason someone identifies as the cause for not engaging in a particular behaviour is not the complete picture and needs to be explored in further detail. You may need to ask focused questions to help them challenge the assumptions behind their explanation for not exercising 267 - Tell me about when you have tried to do ____ over the last few weeks. What have you struggled with? - Please describe when this thought typically occurs. How do you react to it? - What do you immediately think and decide to do? Helpful clarifying questions: - You want to_______. Why do you think you’re not doing ______ right now? - What’s challenging about doing ________ regularly? - When might you encounter this thought? - What is your “immediate response”? (put in context). For example. You get home from a long day, and you think _____________ about being too busy. What do you think next? What do you do next? Helpful clarifying questions related to motivation: - What reasons do you have to _______? - What do you benefit from it? Act as (to a strong mental filter (only see the “busy” aspect and don’t consider other behaviours or benefits of other behaviours) - If you had to do _________, what would you do? - What would happen if you did ________? - What barriers would need to be removed for you to do _______? Try to deeply understand that thought like when and/or in what situation might it come up Possible relational and content techniques: 22. Reframing, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 30. Normalising 6. Evaluate the thought: As I mentioned before, these thoughts are common – many of us have them from time-to-time. However, if we automatically accept them at face value, without challenging them, usually end up deciding not to do________ There are a couple of questions that we can ask ourselves to interrupt this automatic thinking, where (put in context) we have the thought and automatically accept it without challenging it. You can ask yourself: • Am I exaggerating part of the situation? 268 • Am I seeing both sides of the situation? (or, are you seeing the whole picture?) How do you think your view of ________ is affected if you asked yourself these questions? Work through these questions with the participant. You might need to help the person to put these questions in the context of the thoughts that they struggle with. Possible relational and content techniques: 22. Reframing, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 30. Normalising 7. Reframe thought Now that we have challenged your unhelpful thoughts, some find it helpful to come up with a different response that is more accurate or balanced. Could you come with a more helpful response to challenge your unhelpful thought as it occurs (put in context) and that be more likely to lead you to decide to _________? a. After participant comes up with new thought In the future, when you encounter your old thought or similar unhelpful or negative thoughts about ________, I want you to pause and remember this new, more positive thought and the questions that you asked yourself to challenge and reframe your old thought. Possible relational and content techniques: 22. Reframing, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 30. Normalising BAP: Action Planning (Cole et al., 2016; Gutnick et al., 2014) [BCT: 13.2 Framing/reframing]: Section Goals:  Develop SMART Plan 269 8. Ask permission, permission to plan SMART: Many people also find it useful to get very specific about their plan. Would that work for you? “What?” (type of activity, specific behavior or action; consider giving an example or examples if useful.) “When?” (time of day, day of week) “Where?” “How often/long/much?” (often: once, three times, five times; long: minutes, days “With whom?” “When would you like to start?” a. After the individual has made a specific plan, elicit a commitment statement: Just to make sure we both understand the details of your plan, would you mind putting it together and saying it out loud? Possible relational and content techniques: 33. Develop a change plan, 1. Open-ended questions, 3. Reflective statements, 12. DARN questions, 24. Emphasize autonomy Problem-Solving/Coping Planning (Cole et al., 2016; Gutnick et al., 2014) [BCT: 1.2 Problem solving]: 9. Problem-solve Now that you have made a plan, can you think of anything that might come up that would prevent you from carrying out your plan? a. If they discuss barriers: Do you have any ideas for how you might overcome this barrier? i. If they have an idea: That sounds like a great solution for you ii. If they don’t have an idea: Ask permission to provide suggestions Would you like to hear some solution ideas? 270 With permission, provide two or three ideas (behavioral menu). Do you think any of these work for you or is there an idea of your own? b. If they do not report any barriers: That’s great. It sounds like you are very confident in this plan. Possible relational and content techniques: 20. Troubleshooting, 1. Open-ended questions, 3. Reflective statements, 24. Emphasize autonomy 10. Evaluate confidence: - The word “sure” can be substituted for the word “confident.” - Words, gestures, images or analogies (such as climbing a mountain) can be substituted for numbers. - Scaling confidence without numbers often requires judgment. - Use non-verbal cues and clarifying questions as needed to make an assessment about whether or not the person may or may not benefit from further problem-solving. I wonder how confident you feel about carrying out your plan. Considering a scale of 0 to 10, where ‘0’ means you are not at all confident or sure and ‘10’ means you are very confident or very sure, how confident are you about completing your plan? a. Problem-solve to adjust the plan [BCT: 1.2 Problem solving]: i. Greater than or equal to 7: That’s great. It sounds like a good plan for you. Then move to step 5 (below) ii. Less than 7 (explain why it’s important to boost confidence, adjust the plan): __ is great. That’s a lot higher than 0 and shows a lot of interest and commitment. We know that when confidence is a 7 or more, people are more likely to complete their plan. Do you have any ideas about what might raise your confidence to a 7 or more? If they have an idea: 271 Reflect solution. Just to make sure we both understand…. If they don’t have an idea: Ask permission to provide suggestions Would you like to hear some ideas that might raise your confidence? With permission, provide two or three ideas (behavioral menu). Often the following menu applies: Sometimes people cut back on their plan, change their plan, make a new plan or decide not to make a plan. Do you think any of these work for you or is there an idea of your own? iii. If plan is altered, repeat Step 9 and step 10 as needed to evaluate confidence with new plan. Possible relational and content techniques: 11. Confidence ruler, 7. Permission to provide information and advice, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 24. Emphasize autonomy, 30. Normalising Close the Session and Schedule Follow-Up 11. Elicit commitment statement including all discussed points [BCT: 1. Commitment] We’ve covered a lot, so I want to check in again to make sure we both understand all of the details. Would you mind putting your plan together again and saying it out loud? If they do not mention the reframed thought: Would you mind telling me how you might think about your plan differently if an unhelpful thought comes up? 12. Arrange follow-up or accountability Would it be useful to set up a check on how it is going with your plan?” If they want to check, make the follow-up plan specific as to day, time and method 272 Possible relational and content techniques: 12. DARN questions, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 30. Normalising SESSION 2 Checking In (Cole et al., 2016; Gutnick et al., 2014) 1. Check-in How did it go with your plan? [BCT: 1.5 Review behaviour goals] a. If they completed their plan recognize (affirm) their success Why do you think you were successful? b. If the plan was partially completed recognize (affirm) partial completion. To what extent did you complete your plan? Why do you think you might not have been successful? Do you still intend to complete your plan? Why or why not? c. If they did not try to do their plan This is something that is quite common when people try something new Why do you think you were not successful? Possible relational and content techniques: 37. Review outcome goal, 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 30. Normalising 3. Next step What would you like to talk about next? 273  If the person wants to make a new plan follow the steps in Session 1. Use problem-solving and a behavioural menu when needed. b. They may want to talk about what they learned from their action plan Reinforce learning and adapting the plan. c. If the person does not want to make another action plan at this time offer to return to action planning in the future. Possible relational and content techniques: 1. Open-ended questions, 2. Affirmation, 3. Reflective statements, 4. Summary Statements, 24. Emphasize autonomy, 30. Normalising 274 C.11 TIDieR Checklist The TIDieR (Template for Intervention Description and Replication) Checklist*: Information to include when describing an intervention and the location of the information Item number Item Where located ** Primary paper (page or appendix number) Other † (details) BRIEF NAME 1. Provide the name or a phrase that describes the intervention. N/A ______________ WHY 2. Describe any rationale, theory, or goal of the elements essential to the intervention. 89-90, Appendix C.8 ______________ WHAT 3. Materials: Describe any physical or informational materials used in the intervention, including those provided to participants or used in intervention delivery or in training of intervention providers. Provide information on where the materials can be accessed (e.g., online appendix, URL). 95, Appendix C.10 _____________ 4. Procedures: Describe each of the procedures, activities, and/or processes used in the intervention, including any enabling or support activities. 95, Appendix C.10 _____________ WHO PROVIDED 275 5. For each category of intervention provider (e.g., psychologist, nursing assistant), describe their expertise, background and any specific training given. 95 _____________ HOW 6. Describe the modes of delivery (e.g., face-to-face or by some other mechanism, such as internet or telephone) of the intervention and whether it was provided individually or in a group. 95 _____________ WHERE 7. Describe the type(s) of location(s) where the intervention occurred, including any necessary infrastructure or relevant features. 95 _____________ WHEN and HOW MUCH 8. Describe the number of times the intervention was delivered and over what period of time including the number of sessions, their schedule, and their duration, intensity or dose. 108, 115 _____________ TAILORING 9. If the intervention was planned to be personalised, titrated or adapted, then describe what, why, when, and how. 95, Appendix C.10 _____________ MODIFICATIONS 10.ǂ If the intervention was modified during the course of the study, describe the changes (what, why, when, and how). 93 Chapter 4 HOW WELL 276 11. Planned: If intervention adherence or fidelity was assessed, describe how and by whom, and if any strategies were used to maintain or improve fidelity, describe them. N/A _____________ 12.ǂ Actual: If intervention adherence or fidelity was assessed, describe the extent to which the intervention was delivered as planned. N/A _____________ ** Authors - use N/A if an item is not applicable for the intervention being described. Reviewers – use ‘?’ if information about the element is not reported/not sufficiently reported. † If the information is not provided in the primary paper, give details of where this information is available. This may include locations such as a published protocol or other published papers (provide citation details) or a website (provide the URL). ǂ If completing the TIDieR checklist for a protocol, these items are not relevant to the protocol and cannot be described until the study is complete. * We strongly recommend using this checklist in conjunction with the TIDieR guide (see BMJ 2014;348:g1687) which contains an explanation and elaboration for each item. * The focus of TIDieR is on reporting details of the intervention elements (and where relevant, comparison elements) of a study. Other elements and methodological features of studies are covered by other reporting statements and checklists and have not been duplicated as part of the TIDieR checklist. When a randomised trial is being reported, the TIDieR checklist should be used in conjunction with the CONSORT statement (see www.consort-statement.org) as an extension of Item 5 of the CONSORT 2010 Statement. When a clinical trial protocol is being reported, the TIDieR checklist should be used in conjunction with the SPIRIT statement as an extension of Item 11 of the SPIRIT 2013 Statement (see www.spirit-statement.org). For alternate study designs, TIDieR can be used in conjunction with the appropriate checklist for that study design (see www.equator-network.org). 277 Supplementary Files and Materials for Study 5 D.1 Intervention Perceptions Interview Guide Interview Call: Thank you for participating in our brief counselling intervention and agreeing to participate in this interview. The purpose of this study is to examine the acceptability and usefulness of a behavioural intervention to promote participation among family support providers. The purpose of this interview is to understand what your perceptions of the intervention are. The findings from this interview may help to improve the intervention in the future. Please remember that there are no right or wrong answers and you may withdraw at any point. I would just like to remind you that… - Your participation in this study is voluntary. - You can decide to stop at any time, even part-way through the interview for whatever reason. - If you decide to stop participating, there will be no consequences to you. - We can discuss what is done with the data if you decide to stop. This could include returning it to you, destroying it or using the data collected up to that point Consent Questions - Do you have any questions or would like any additional details? - Do you agree to participate in this study knowing that you can withdraw at any point with no consequences to you? Interview Questions In what ways did you find the intervention helpful? - How did you feel about the language used in the intervention? In what ways did you find the intervention unhelpful? Do you think this intervention helped you to reach your goals? - How? Do you think this intervention helped you in outside of reaching your goals? - How? What would you change about the intervention? Did the intervention elicit any negative feelings? If we were to further evaluate this program in the future, what would you change about the study? - How did you feel about responding to the questionnaires? 278 - How did you feel about the length of the intervention? - What do you think worked about the study? - What do you think didn’t work about the study? What influenced you to participate in the study? - How did you hear about the study? Where would have been the best place for you to hear about this study? - If programs were to be developed based on the findings, what resources would be most helpful for you? Where would you like to hear about the program? - What made you decide to participate in this study? - How did the language used impact your perception of the study? E.g., using the term support provider versus caregiver or family member 279 D.2 TIDieR Checklist The TIDieR (Template for Intervention Description and Replication) Checklist*: Information to include when describing an intervention and the location of the information Item number Item Where located ** Primary paper (page or appendix number) Other † (details) BRIEF NAME 1. Provide the name or a phrase that describes the intervention. N/A ______________ WHY 2. Describe any rationale, theory, or goal of the elements essential to the intervention. 104 - 107 Chapter 4, Appendix C.8 WHAT 3. Materials: Describe any physical or informational materials used in the intervention, including those provided to participants or used in intervention delivery or in training of intervention providers. Provide information on where the materials can be accessed (e.g., online appendix, URL). 108-109, Appendix C.10 _____________ 4. Procedures: Describe each of the procedures, activities, and/or processes used in the intervention, including any enabling or support activities. 108-109, Appendix C.10 _____________ WHO PROVIDED 280 5. For each category of intervention provider (e.g., psychologist, nursing assistant), describe their expertise, background and any specific training given. 108 _____________ HOW 6. Describe the modes of delivery (e.g., face-to-face or by some other mechanism, such as internet or telephone) of the intervention and whether it was provided individually or in a group. 108-109 _____________ WHERE 7. Describe the type(s) of location(s) where the intervention occurred, including any necessary infrastructure or relevant features. 108-109 _____________ WHEN and HOW MUCH 8. Describe the number of times the intervention was delivered and over what period of time including the number of sessions, their schedule, and their duration, intensity or dose. 108, 115 _____________ TAILORING 9. If the intervention was planned to be personalised, titrated or adapted, then describe what, why, when, and how. 108, Appendix _____________ MODIFICATIONS 10.ǂ If the intervention was modified during the course of the study, describe the changes (what, why, when, and how). N/A Chapter 4 HOW WELL 281 11. Planned: If intervention adherence or fidelity was assessed, describe how and by whom, and if any strategies were used to maintain or improve fidelity, describe them. 112 _____________ 12.ǂ Actual: If intervention adherence or fidelity was assessed, describe the extent to which the intervention was delivered as planned. 116 _____________ ** Authors - use N/A if an item is not applicable for the intervention being described. Reviewers – use ‘?’ if information about the element is not reported/not sufficiently reported. † If the information is not provided in the primary paper, give details of where this information is available. This may include locations such as a published protocol or other published papers (provide citation details) or a website (provide the URL). ǂ If completing the TIDieR checklist for a protocol, these items are not relevant to the protocol and cannot be described until the study is complete. * We strongly recommend using this checklist in conjunction with the TIDieR guide (see BMJ 2014;348:g1687) which contains an explanation and elaboration for each item. * The focus of TIDieR is on reporting details of the intervention elements (and where relevant, comparison elements) of a study. Other elements and methodological features of studies are covered by other reporting statements and checklists and have not been duplicated as part of the TIDieR checklist. When a randomised trial is being reported, the TIDieR checklist should be used in conjunction with the CONSORT statement (see www.consort-statement.org) as an extension of Item 5 of the CONSORT 2010 Statement. When a clinical trial protocol is being reported, the TIDieR checklist should be used in conjunction with the SPIRIT statement as an extension of Item 11 of the SPIRIT 2013 Statement (see www.spirit-statement.org). For alternate study designs, TIDieR can be used in conjunction with the appropriate checklist for that study design (see www.equator-network.org).
Thesis/Dissertation
eng
Kinesiology
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Gainforth, Heather
The co-development of theory-based behaviour change intervention to promote leisure time activity in family support providers of people with spinal cord injury
Text