Medicine, Department of
DSpace
UBCV
Jeawon, Murveena
Master of Science - MSc
University of British Columbia
Background: Spinal cord injuries can have profound long-term consequences. However, less is known about the experiences of people with incomplete spinal cord injuries who can ambulate. Objectives: 1) To identify the needs and strengths of people with incomplete spinal cord injury who can ambulate and explore potential supports, services, and programs that would help them in the community. 2) To examine associations between subjective quality of life and other socio-demographic variables in this population and to explore differences in experiences of people with different levels of quality of life (i.e., low, moderate, and high). Materials and methods: Study 1, was a qualitative descriptive study, and study 2 was a mixed-method study. Semi-structured interviews and standardized measures of function, health, mobility, and life satisfaction were used as the main means of data collection. In study 1 quantitative data were used descriptively, and in study 2, participants were categorized into three levels of quality of life, and the experiences of participants in these groups were explored quantitatively and qualitatively. Results: The 24 participants were 55 years old on average, with 54% being male. In study 1, we identified three themes: (1) ‘I really couldn’t go there’, described the physical and social barriers experienced by participants (2) ‘In this netherworld’ revealed participant’s desire for greater social understanding of incomplete spinal cord injury, and (3) ‘I just don’t quit’, displayed the perseverance that participants demonstrated following their injury. In study 2, the quantitative portion indicated that the variables male sex, having attended rehabilitation, and being married were strongly associated with increased quality of life. The qualitative portion revealed how people with a low quality of life felt that the neighborhood-built environment was not supportive. People with a low and moderate level of quality of life reported feeling devalued by able-bodied people and reported that their mobility was deteriorating over time. Conclusion: The study findings emphasize how changes to the built and social environment are needed to improve accessibility and promote the inclusion of people with incomplete spinal cord injuries who can ambulate.
UNDERSTANDING THE EXPERIENCES AND QUALITY OF LIFE OF PEOPLE WITH INCOMPLETE SPINAL CORD INJURY WHO CAN AMBULATE by Murveena Jeawon B.Sc., The University of Mauritius, 2016 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Rehabilitation Sciences) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) October 2022 © Murveena Jeawon, 2022 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, a thesis entitled: Understanding the experiences and quality of life of people with incomplete spinal cord injury who can ambulate. submitted by Murveena Jeawon in partial fulfillment of the requirements for the degree of Master of Science in Rehabilitation Sciences Examining Committee: Dr. W. B Mortenson, Associate Professor, Occupational Sciences and Occupational Therapy, UBC uUBCUBC Supervisor Dr. A. Bundon, Assistant Professor, School of Kinesiology, UBC Supervisory Committee Member Dr. H. Chaudhury, Professor, and Chair, Department of Gerontology, Simon Fraser University Supervisory Committee Member Dr. J.J. Eng, Professor, Department of Physical therapy, UBC Supervisory Committee Member Dr. S.P. Barbic, Associate Professor, Occupational Sciences, and Occupational Therapy, UBC Additional Examiner iii Abstract Background: Spinal cord injuries can have profound long-term consequences. However, less is known about the experiences of people with incomplete spinal cord injuries who can ambulate. Objectives: 1) To identify the needs and strengths of people with incomplete spinal cord injury who can ambulate and explore potential supports, services, and programs that would help them in the community. 2) To examine associations between subjective quality of life and other socio-demographic variables in this population and to explore differences in experiences of people with different levels of quality of life (i.e., low, moderate, and high). Materials and methods: Study 1, was a qualitative descriptive study, and study 2 was a mixed-method study. Semi-structured interviews and standardized measures of function, health, mobility, and life satisfaction were used as the main means of data collection. In study 1 quantitative data were used descriptively, and in study 2, participants were categorized into three levels of quality of life, and the experiences of participants in these groups were explored quantitatively and qualitatively. Results: The 24 participants were 55 years old on average, with 54% being male. In study 1, we identified three themes: (1) ‘I really couldn’t go there’, described the physical and social barriers experienced by participants (2) ‘In this netherworld’ revealed participant’s desire for greater social understanding of incomplete spinal cord injury, and (3) ‘I just don’t quit’, displayed the perseverance that participants demonstrated following iv their injury. In study 2, the quantitative portion indicated that the variables male sex, having attended rehabilitation, and being married were strongly associated with increased quality of life. The qualitative portion revealed how people with a low quality of life felt that the neighborhood-built environment was not supportive. People with a low and moderate level of quality of life reported feeling devalued by able-bodied people and reported that their mobility was deteriorating over time. Conclusion: The study findings emphasize how changes to the built and social environment are needed to improve accessibility and promote the inclusion of people with incomplete spinal cord injuries who can ambulate. v Lay summary In Canada, there are around 86,000 people with spinal cord injuries. With advances in medical care, most (71%) have an incomplete injury of which 50% are able to walk with a mobility aid. The aims of this study were to 1) understand the needs and strengths of people with incomplete spinal cord injury who are able to ambulate, 2) identify the types of community supports, services, and initiatives they want 3) examine associations between subjective quality of life and other socio-demographic variables and 4) explore differences in experiences of people with low, moderate, and high levels of quality of life. Participants were interviewed and completed self-report measures of function, health, and life satisfaction. The findings highlighted issues with discrimination, potential feelings of exclusion as many spinal cord injury programs are tailored to those with complete injuries, problems with the broader built and social environment, and misperception about invisible disabilities. vi Preface The conception of this study was based on discussions with my supervisor Dr. W.B Mortenson and the resource center manager at SCI- BC, Ms. J. Maffin. I collected that data with two MOT students (Ms. B. Hase and Ms. S. Miller) and we worked collaboratively on the first study. I took a lead role in conducting the second study which involved secondary data analysis of the original data collected. For that paper, I led the data analysis and wrote up the findings with feedback from my supervisor, other thesis committee members (Dr J.J. Eng., Dr A. Bundon, Dr H. Chaudhury), and research partners (Ms. J. Maffin, Ms. J. Wright, Mr. R. Clarkson). The study received ethics approval from the University of British Columbia's Behavioral Research Ethics Board (H20-01478) and the local health authority. At the present time, Study 1 has been submitted to a journal and Study 2 is in preparation for submission. vii Table of contents Abstract ....................................................................................................................................................... iii Lay summary ............................................................................................................................................... v Preface ......................................................................................................................................................... vi Table of contents ....................................................................................................................................... vii List of tables................................................................................................................................................ ix Glossary ....................................................................................................................................................... x Acknowledgments .....................................................................................................................................xiii 1. Introduction ......................................................................................................................................... 1 1.1. Theoretical Perspective............................................................................................................... 5 2. Understanding The Experiences of People with Incomplete Spinal Cord Injury Who Can Ambulate ...................................................................................................................................................... 9 2.1. Introduction ................................................................................................................................. 9 2.1.1. Theoretical Perspective ...................................................................................................... 11 2.2. Method ....................................................................................................................................... 12 2.2.1. Recruitment ........................................................................................................................ 13 2.2.2. Data Collection ................................................................................................................... 13 2.2.3. Data Analysis ...................................................................................................................... 16 2.3. Results ........................................................................................................................................ 17 2.4. Discussion................................................................................................................................... 29 2.5. Recommendations/ Directions for Future Research .............................................................. 33 2.6. Limitations ................................................................................................................................. 34 2.7. Conclusion ................................................................................................................................. 35 3. Bridging Statement ........................................................................................................................... 36 4. Exploring The Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate .................................................................................................................................................... 37 4.1. Introduction ............................................................................................................................... 37 4.2. Method ....................................................................................................................................... 39 4.2.1. Study Participants .............................................................................................................. 40 4.2.2. Recruitment ........................................................................................................................ 40 4.2.3. Data Collection ................................................................................................................... 40 4.2.4. Data Analysis ...................................................................................................................... 43 4.3. Results ........................................................................................................................................ 45 4.3.1. Quantitative ........................................................................................................................ 45 viii 4.3.2. Qualitative .......................................................................................................................... 56 4.4. Discussion................................................................................................................................... 82 4.5. Limitations and Future Directions .......................................................................................... 88 4.6. Conclusion ................................................................................................................................. 89 5. Personal Reflection ........................................................................................................................... 90 6. Conclusion ......................................................................................................................................... 93 Bibliography .............................................................................................................................................. 95 Appendices ............................................................................................................................................... 123 Appendix A: Consolidated Criteria For Reporting Qualitative Research Checklist ................... 123 Appendix B: Consent Form ............................................................................................................... 128 Appendix C: Interview Guide ............................................................................................................ 136 Appendix D: Demographic Survey and Outcome Measures .......................................................... 139 Appendix E: Good Reporting Of A Mixed Method Study Framework Checklist ........................ 162 Appendix F: Data Collection Procedures ......................................................................................... 163 Appendix G: Kolmogorov – Smirnov Test ....................................................................................... 164 Appendix H: Relationship Among Sex, Marital Status, and Living Situation .............................. 165 ix List of tables Table 1: Descriptive Data For Categorical and Continuous Variables ........................................ 17 Table 2: Mann - Whitney U, Kruskal - Wallis, Spearman Correlation, Cohen’s D, Cohen’s F With Demographic Factors, Standardized Measures, and 3 Levels of Quality of Life ................ 47 Table 3: Potential Reason for The Quality-of-Life Ratings ......................................................... 57 Table 4: Low Quality of Life Quotes Organized by Factor ......................................................... 65 Table 5: Moderate Quality of Life Quotes Organized by Factor ................................................. 72 Table 6: High Quality of Life Quotes Organized by Factor ........................................................ 79 x Glossary American spinal injury association impairment scale It classifies deficits in sensory and motor in people with spinal cord injury by categorizing people from complete spinal cord injury “A” to normal sensory and motor function “E” (Kirshblum et al., 2011). A – complete injury; no sensory/motor function is conserved in sacral segment S4-S5 B – Incomplete injury; Sensory function is conserved below neurological level including S4-S5 C – Incomplete injury; Motor function is conserved below the neurological level and more than half of the major muscles have a grade ˂ 3 D – Incomplete injury; Motor function is conserved below the neurological level and half of the major muscles below the neurological level have a grade of ≥ 3 E – Normal; Motor and sensory functions are normal Autonomic dysreflexia Any stimulus (menstruation, sexual intercourse, sunburn) could cause overactivity of the sympathetic nervous system leading to an increase in blood pressure and pounding headache (Blackmer, 2003; Cragg & Krassioukov, 2012; Wan & Krassioukov, 2014). xi Life satisfaction It is defined as a subjective assessment of one's present quality of life with respect to one's standards and expectations, and it includes an assessment of the amount to which one's life objectives have been met; it is also an indicator of well-being (Pavot & Diener, 1993, 2008; Anand & Arora, 2009). Life satisfaction and quality of life They are believed to be connected to living a healthy and fulfilling life (Anand & Arora, 2009). In psychiatry and psychology, as well as to a smaller degree in general medicine, quality of life is frequently linked with life satisfaction (Zullig et al., 2005). Quality of life Similar to how life satisfaction is viewed as a general and consistent sense of well-being, quality of life is a concept related to it (Zullig et al., 2005) It refers to how people perceive their emotional and physical well-being and it encompasses a wide range of areas, including corporal, emotional, economical, devotional, and social prosperity (Wang et al., 2001). Quality of life is sometimes measured quantitatively by using objective indicators such as wealth, employment, and standard of living (Whiteneck, 1994; Xavier et al., 2003). xii Universal design It is creating environments and products that are easier to use by a wide range of people without the need for adaptation (Story, 1998). Universal design includes designing environments and products that are more easily accessed and used by a spectrum of people without specialized adaptations xiii Acknowledgments I offer my sincerest gratitude to everyone who has helped make this thesis possible. I acknowledge my supervisor, Dr. W.B Mortenson for his guidance, support, and the opportunities he provided to help me grow as a researcher. Throughout my master's studies, I could not have asked for a greater adviser and mentor. I would also like to thank my committee members, Dr. J. J Eng, Dr. A. Bundon and Dr. H. Chaudhury, for their feedback and support throughout the project. I also would like to extend my gratitude to Ms. B. Hase, Ms. S. Miller, Ms. J. Maffin, Ms. J. Wright and Mr. R. Clarkson for their active involvement in this study. I am forever thankful to my family for their endless support throughout my life and academic journey. 1 1. Introduction Spinal cord injuries are rather frequent and can have a significant impact on a person's life. A spinal cord injury is an injury to any segment of the spinal cord or nerves at the end of the spinal canal (Spinal Cord Injury Ontario, 2022). In 2010, incomplete tetraplegia was the most common form of injury (68%) along with incomplete paraplegia (32%) (Praxis Spinal Cord Institute, 2019). Approximately 51,600 Canadians (75%) (Burns et al., 2012) with incomplete injuries will recover some degree of walking capacity by one-year post-injury after participation in a rehabilitation program (Patrick et al., 2011; Steeves et al., 2011). It is estimated that 50% of people with an incomplete spinal cord injury are able to ambulate with or without the assistance of a cane or other devices (Poncumhak et al., 2014). Some quantitative studies have described issues that people with incomplete spinal cord injury who can ambulate have in common with other people with spinal cord injury. Potential secondary complications include chronic pain, bladder and bowel problems, sexual dysfunction, fatigue, spasticity, numbness, tingling sensation, and autonomic dysreflexia1 (Guilcher et al., 2013). Autonomic dysreflexia may be misdiagnosed in people with incomplete spinal cord injuries (Bauman et al., 2012). Sexual dysfunction among people with an incomplete spinal cord injury has an impact on their quality of life because it may cause tension in partner relationships (Daoust et al., 2018). Pain and spasticity may exacerbate fatigue, which in turn has an adverse effect on emotional and physical well-being (Daoust et al., 2018). Spasticity may lead to pain, a decreased ability to mobilise, skin ulcers, bladder, and bowel problems (Daoust et al., 2018). 1 Italicized terms are defined in the Glossary section 2 Quantitative studies have identified differences in function and participation between people with ambulatory incomplete spinal cord injury and people with non-ambulatory incomplete spinal cord injury. When compared to those with incomplete spinal cord injuries who use wheelchairs, people with incomplete spinal cord injuries who can walk have more daily fatigue and pain. (Saunders et al., 2013). People with ambulatory incomplete spinal cord injury may experience falls as a result of spasticity, frequent spasms, contractures, and muscle weakness (Brotherton et al., 2007; Lohne, 2005). However, people with ambulatory incomplete spinal cord injury are more likely to have employment compared to those with non-ambulatory incomplete spinal cord injury (Ackery 2004; Ahuja, 2016, 2017, 2018). Relatively few studies have explored the experiences of people with incomplete spinal cord injury who can walk. Studies in Canada, Australia, and the United Kingdom have identified some areas of concern among this population such as challenges with community reintegration, barriers to participation in leisure time physical activity and the challenges presented by living with invisible disabilities (Jannings & Pryor, 2012; Williams et al., 2014). A qualitative study in Canada on people with incomplete spinal cord injury who can ambulate found that they experience a reduced visibility of their disabilities (Parkinson, 2005). That is, the needs of this population are being overlooked and are poorly understood (Parkinson, 2005). A qualitative study from Australia identified issues with reduced quality of life and frustration because many people with incomplete spinal cord injury with the ability to walk were not seen as having a disability, compared to people with complete spinal cord injury who use a wheelchair (Jannings & Pryor, 2012). An additional qualitative study from the United Kingdom, suggested that people with incomplete spinal cord injury with the ability to walk partake in fewer leisure time physical 3 activities compared to people with non-ambulatory incomplete spinal cord injury (Williams et al., 2014). This means they may not experience physical (e.g., fitness) and psychosocial benefits (e.g., subjective well-being) associated with physical activity (Williams et al., 2014). Concerns have been raised about the quality of life2 of people with spinal cord injury generally. Two narrative reviews revealed that after spinal cord injury, quality of life appeared to diminish compared to the general population (Dijkers, 2005, Post & Noreau, 2005). A meta-synthesis qualitative study suggested that people with spinal cord injury potentially experienced lower quality of life post-injury because of low salary, pain, mobility limitations, spasticity, and the sense of not having full control of their life (Hammell, 2004). A qualitative study suggested that having an employment provided social, and psychological benefits to people with spinal cord injury which increased their quality of life (Chapin & Kewman, 2001). I was not able to find any articles about incomplete spinal and general quality of life. Some research has found associations between the degree of completeness of injuries and health-related quality of life, but the evidence is not consistent. A cohort study conducted in Canada found that people with an American spinal injury association impairment scale3 grade A to C had lower health related quality of life compared to those with an American spinal injury association Impairment Scale grade of D or E (Rivers et al., 2018). A cross-sectional study conducted in Norway also revealed that people with an American spinal injury association Impairment Scale4 grade A to C had a lower health related quality of life compared to people with an American spinal injury association Impairment Scale grade D or E (Lidal et al., 2008). 2 Italicized terms are defined in the Glossary section 3 Italicized terms are defined in the Glossary section 4 Italicized terms are defined in the Glossary section 4 In contrast, a quantitative study conducted in the United States revealed that individuals with an American spinal injury association Impairment Scale grade D injury had lower scores, indicating a poorer health related quality of life (Tate et al., 2015). A cross-sectional study conducted in Finland reported that people with incomplete injuries had a higher rate of depression and distress than those with complete lesions; they conjectured that people with incomplete injuries have a harder time adjusting to their disability (Dahlberg et al., 2005). People who can walk following spinal cord injury may experience impairments and limitations that may be unrecognized by those around them because they do not use a wheelchair, which is a powerful disability signifier (Goering, 2015). This may lead to what has been described as “invisible work”, which may involve struggling with long-lasting pain, bladder or bowel issues, and sexual dysfunction (Carpenter & Forman, 2004; O'Connor et al., 2004). People with incomplete spinal cord injury who can ambulate may feel excluded from organizations, which have been established originally for people with more complete spinal injuries (Kennedy et al., 2006; O’Connor et al., 2004). One study found that people with incomplete paraplegia were not allowed to complain since they were in a better situation compared to people with complete injuries (i.e., they needed less assistance) (O'Connor et al., 2004). For example, in his autobiography following spinal cord injury, Mike Harcourt, former premier of British Columbia stated that since those who use wheelchairs are much worse off, people with incomplete spinal cord injuries should consider themselves lucky that they can still walk (Harcourt & Lekich, 2004). 5 1.1. Theoretical Perspective This study is informed by the theory of complex embodiment. According to Siebers (2009) the theory of complex embodiment “understands disability as an epistemology that rejects the temptation to value the body as anything other than what it once was but instead embraces what the body has become and will become relative to the demands on it, whether environmental, representational, or corporeal” (p. 27). In other words, this theory considers the body as both a material physical body and a social construction (Siebers, 2009). The medical model portrays disability as a characteristic of the person, which is considered the “natural” result of an impairment (Olivier, 1996). Oliver (1993) indicated that trying to address disability from a medical perspective, through individually focused interventions, has been detrimental for people with disabilities because it ignores social and cultural barriers in the social environment. Based on the medical model, it is the individual’s responsibility to try and “overcome” their disability and to become (or appear) as normal as possible to avoid the need for accommodations and issues associated with stigma. Hence, there is a very strong push for people to ambulate even if the sequelae of ambulation are (more) disabling (Brotherton, 2012). In contrast, the social model posits that it is social practices that make a person disabled and this paragraph depicted the critiques of how the social model has been adopted. The social model of disability defines disability “not as an individual defect but as the product of social injustice, one that requires not the cure or elimination of the defective person but significant changes in the social and built environment" (Siebers 2009, p. 4). Therefore, the social model moves the attention away from the person (Llewellyn & Hogan, 2000), which may be helpful to 6 address issues of systemic ableism, e.g., company managers may not employ a person with a disability because the company might need to provide accommodations or change the ways things are done (Siebers, 2009). One critique of the social model is that it tends to ignore the body because the focus is on politicizing disability (Kazemi & Sarikaya, 2018). The social model may also exclude people with invisible disabilities, like those with incomplete spinal cord injuries who can ambulate (Goering, 2015). Shakespeare (2010) identified three main limitations of the social model. First, when social barriers are eliminated, having an impairment will still carry disadvantages. Second, it is difficult to celebrate ‘disability pride’ because ‘disability’ refers to limitation and incapacity. Third, to diminish inequity, people with disability will have to be emancipated; however, to do so their communities will need additional resources to address their needs. Like the second limitation identified by Shakespeare (2010), concerns have been raised about how the social model may affect the identities of people with disabilities (Hughes & Paterson, 1997; Siebers, 2009). People with incomplete spinal cord injury who can ambulate may feel compelled to try and ‘pass’ as someone with an able body: passing is defined as a performance in which people pretend to be someone they are not (Goffman, 1963). People tend to try to pass as someone with a less stigmatized identity. For example, people with disability may attempt to pass as someone without a disability. However, it is possible that someone with a disability might try to pass as someone with a more severe disability if that is advantageous in the situation (e.g., obtaining disability benefits). There may be unanticipated issues associated with passing. (Siebers, 2009). Siebers identified that there are normative expectations that people with disabilities must try to be as able-bodied as possible all the time. Sedgewick’s work, the ‘Epistemology of the Closet,’ 7 explored the multiple ways people with disabilities can either make their presence known or become invisible, which may be affected by the occurrence of invisible conditions (e.g., fatigue, chronic pain, bowel incontinence, sexual dysfunction) (Sedgewick’s, 1990). Code-switching is another term that is used to describe an impression management strategy in which people adjust their self-presentation to receive desirable outcomes (Eastman, 1990). The theory of complex embodiment attempts to address the limitations of both the medical and social model by offering an understanding of the corporeal nature of disability in a way that recognizes disability as a minority identity and supports people with disability having more control over their identities (Siebers, 2009). The theory of complex embodiment recognizes that people’s lived experiences of their bodies are affected by the consequences of disabling environments and it also stresses how impairments may affect people’s bodies and their personal perceptions (Siebers, 2009). This theory views the interaction between the body and social image as complementary rather than unidirectional (as in the social model) or missing (as in the medical model). In order to avoid labelling some identities as pathological, complex embodiment takes into account the intersectional nature of identity, which encompasses a variety of identity markers, such as sexual orientation, ethnicity, socioeconomic status, and ability. (Siebers, 2009). The theory of complex embodiment is not without its detractors. Dobbs (2012) questioned to what extent the model acknowledges that individuals with impairments may react differently to disability. Some people may try to disguise their disabilities, whereas others may give meaning to their lived encounters. Some people may oppose stereotypes by portraying their experiences as positive, whereas others may accept being treated unfairly because they have a 8 disability (Hehir, 2002). A closer reading reveals that some of this critique is unfounded as Siebers indicates “in societies where groups are identified for differential and pejorative treatment, individuals belonging to these groups may internalize prejudices against themselves,” (2009, p. 18) although this does undermine his claims that people with disabilities share a common minority group identity. In responding to concerns that “identity politics preserves the identities created by oppression: these identities are born of suffering, and embracing them represents a form of self-victimization” (Siebers, 2009, p.20), Siebers argues that these experiences provide people with disabilities epistemological insights. To buttress this theory of complex embodiment we will also draw upon the Dewey concept of transactionalism (Dickie et al., 2006). Transactionalism is based on the understanding that systems cannot be understood reductionistically. For example, people and their environments can not be understood in isolation, as they simultaneously co-construct each other (Dickie et al., 2006). Transactionalism is complementary to the theory of complex embodiments as it rejects both autonomous individualism which valorizes the idea that people should be completely independent while completely disregarding our interdependence on others (Christman, 2020), and environmental determinism, which indicates human behaviour is dictated by environmental factors (i.e., people lack agency) (Johnston, 2017). Based on the theory of complex embodiment we will carefully consider their corporeal experiences considering normative expectations and disabling environmental influences. Using transactionalism we will try to understand how participants may influence their environments and environments may influence participants in a way that does not promote victimization. 9 2. Understanding The Experiences of People with Incomplete Spinal Cord Injury Who Can Ambulate 2.1. Introduction Spinal cord injuries are relatively common injuries that can have profound long-term effects. The global incidence of spinal cord injury is between 40 and 80 cases per million population (World Health Organisation., 2013). A complete spinal cord injury occurs when there is the full loss of motor and sensory function distal to the level of injury whereas in an incomplete spinal cord injury, sensory and motor functions below the level of injury are partially conserved (Wilson et al., 2012; National Institute of Neurological Disorders and Stroke, 2013). Over 86,000 Canadians have a spinal cord injury and of those, a majority (71%) have an incomplete spinal cord injury (Farry & Baxter, 2010; Noonan, 2012). The incidence of people with incomplete spinal cord injury is on the rise due to improved treatment of acute injuries, and an increase in lower velocity injuries, such as falls, among older adults (Brotherton et al., 2007; Noonan, 2012). According to the American spinal injury association Impairment Scale5, a person with a grade A is considered to have a complete motor and sensory lesion whereas a person with grade B has a complete motor lesion but the sensory function is preserved. A person with grades C or D is considered to have a motor incomplete lesion. Many people with grades C and D on admission will regain functional community ambulation one - year post injury (i.e., 71-100% of those under the age of 50) (Burns et al., 2012). Ambulatory people with incomplete spinal cord injury experience unique challenges with function and participation. For example, this population experiences more fatigue and daily pain 5 Italicized terms are defined in the Glossary section 10 compared with those with incomplete spinal cord injuries who rely on wheelchairs (Saunders et al., 2013). This may be partly due to the use of assistive mobility devices such as canes, walkers, or crutches, which require increased energy use and greater demand on the shoulder joints (Haubert et al., 2006; Hugh-Jones, 2010; Jain et al., 2010). Additionally, they may experience frustration ambulating, especially if it is quicker to perform tasks using a wheelchair (Jannings & Pryor, 2012). A mixed method study from Canada revealed that people with spinal cord injury who can ambulate were more vulnerable to falls especially in their houses while trying to change their position or walk (Singh et al., 2020). Few studies have explored the subjective experiences of people with incomplete spinal cord injury who can ambulate. Those studies that have explored subjective experiences, have mostly focused on the experiences of relearning to walk with the use of exoskeletons and other forms of locomotor training (Jordan et al., 2013; Lajeunesse et al., 2018; Singh et al., 2018; Manns et al., 2019). Three previous studies explored the broader life experiences of this population (Parkinson, 2005; Jannings & Pryor, 2012; Jorgensen & Roaldsen, 2017). Jannings and Pryor (2012) noted through in-depth interviews that these individuals experienced “a sense of feeling misunderstood due to the feeling of being “partly disabled”” (p. 1823). Similarly, Parkinson (2005) noted the unique psychosocial issues faced by this group in their experiences of accessing support services were due to common societal misconceptions around disability. For example, individuals with incomplete spinal cord injury may be denied appropriate resources due to a lack of visible indicators of their disability (Parkinson, 2005). Society’s negative attitude towards people with disabilities puts pressure on individuals to future minimize or hide their condition to be perceived as 'normal’ and to maintain congruence of identity (Jorgensen & Roaldsen, 2017). These measures included, for example, increasing their fall risk by not using 11 mobility devices (Jorgensen & Roaldsen, 2017). Based on these distinct functional challenges, people with incomplete spinal cord injury who can ambulate may feel excluded from spinal cord injury organizations, which historically developed services around the needs of people with complete spinal cord injuries (O’ Connor et al., 2004; Kennedy et al., 2006). Given the increasing number of people with incomplete spinal cord injury who can ambulate and the limited research on their experiences and preferences regarding the suitability of available programs and services, the objectives of this study are: (1) To identify the distinct characteristics, experiences, needs and strengths of people with incomplete spinal cord injury who can ambulate. (2) To explore and discuss potential supports, services, and programs that would best assist this population to adjust, adapt and thrive in the community. 2.1.1. Theoretical Perspective This study is informed by Siebers’ theory of complex embodiment. The theory of complex embodiment considers the body as both a material and social construction (Siebers, 2009). For example, it recognizes the disabling effects that environments can have on people, while also acknowledging the bodily experiences and symptoms of having a disability (Siebers, 2009). Therefore, this theory represents a synthesis of the medical model (i.e., disability stems from personal factors) and social models of disability (i.e., disability is caused by societal factors) (Siebers, 2009). The theory of complex embodiment helped to inform the objectives of the study and we drew on the theory to develop the interview guide. It also acted as a sensitizing concept during the analysis. The theory of complex embodiment attempts to address the limitations of both the social 12 and medical model by offering an understanding of the corporeal nature of disability in a way that recognizes disability as a minority identity and supports people with disabilities having more control over their bodies and taking pride in their disability (Siebers, 2009). A minority identity is both a collective and individual identity based on shared experiences of oppression and differential treatment, wherein the minority group experiences a power imbalance that marginalizes them from the larger society (Siebers, 2009). This theory views the relationship between the body and social image as complementary rather than unidirectional (as in the social model) or absent (as in the medical model). Complex embodiment considers the intersectional nature of identity markers such as sexual orientation, ethnicity, social status, and ability, which helps to avoid viewing these identities as pathological (Siebers, 2009). 2.2. Method In this qualitative descriptive study, interviews were the primary means of data collection (Sandelowski, 2010). These were supplemented with standardized, self-report measures, which were used to describe the sample. In this case, the study was suggested by three people working in a spinal cord injury support organisation and they all have incomplete spinal cord injury with the ability to ambulate. Data were collected by the three authors who were graduate students. The research team also included two people with lived experience with incomplete spinal cord injury. The primary method of data collection was semi-structured interviews which were supplemented with standardized measures of health, function, and life satisfaction that helped to describe the participants. The study received ethics approval from the University of British Columbia's Behavioural Research Ethics Board (H20-01478) and local health authorities. The study is reported according to the consolidated criteria for reporting qualitative research 13 guidelines (Tong et al., 2007) (Appendix A). 2.2.1. Recruitment Twenty-four participants were recruited using convenience sampling and there were no drop outs. To be included in the study, participants had to have an incomplete spinal cord injury, be able to ambulate short distances (15 meters) with or without aids, be 19 years or older, and live in British Columbia, Canada. Those who were unable to communicate in English or provide their own consent were excluded. Participants were recruited through notices posted at GF Strong Rehabilitation Centre and on the International Collaboration on Repair Discoveries website. Previous study participants with spinal cord injury who indicated they had an interest in being contacted about future studies were also recruited. Information was also posted about the study on social media channels. 2.2.2. Data Collection Participants provided informed consent to participate in the study (Appendix B). Due to the physical distancing policies that were in place because of the coronavirus pandemic, data collection was done virtually (e.g., Zoom videoconferencing). Before semi-structured interviews were conducted, participants completed the demographic survey and four standardized measures via the Qualtrics online survey program. Interviews were conducted by the three authors who were graduate students at the time of the study, under the supervision of the senior investigator who has extensive qualitative research experience. Interviews lasted approximately one hour and were audio-recorded and transcribed verbatim. Participants were informed to be alone in the room during the interview. The interviews were a single time interview and the three authors had no prior relationships with any of the participants. None of the participants knew any of the interviewers prior to the interview. The questions in the interview (Appendix C) were designed 14 to explore experiences of having an incomplete spinal cord injury (e.g., moving around the community, how you perceive yourself and how you are perceived by others), the barriers to participating in the community, the facilitators to participation in the community, e.g., social support programs, the need to pass or appear to have a disability and changes they would like to see to better facilitate the participation of people with incomplete spinal cord injury. The interview guide was developed in collaboration with co-investigators with lived experience of spinal cord injury. Prompts were also given during the interview to help participants to better understand the questions. A demographic questionnaire and four self-report measures were administered as described below and can be found in Appendix D. All four measures were developed and tested for reliability. Demographic Survey. A demographic survey was used to gather descriptive information and collected data on each participant’s age, sex, type of spinal cord injury, time since injury, employment status, living situation, level of education, employment status, and marital status. Functional Ambulatory Categories. Ambulatory ability to walk 15 meters indoors was assessed using the functional ambulation categories consisting of six items (Menrholz et al., 2007). The items are as follows: level zero is unable to ambulate at all, level one is totally dependent on physical assistance to support body weight and maintain balance when ambulating, level two is dependent on physical assistance just help with balance when ambulating, level three is dependent on supervision when ambulating, level four is independently on flat surface only when ambulating and level five is independent when ambulating. A score of zero indicates one 15 cannot walk and a score of five indicates one can walk freely. Excellent inter-rater reliability was found (k=0.950) within two months post-rehabilitation (Menrholz et al., 2007). Life Satisfaction Questionnaire- 11. Life satisfaction was assessed using the life satisfaction questionnaire – 11 which is a checklist that assess global satisfaction in life (Fugl-Meyer et al., 1991), but has since had several important domains of life satisfaction added (Melin et al., 2003). Life satisfaction questionnaire – 11 showed moderate to excellent one week reliability (k = 0.59-0.97) (Ekstrand et al., 2018). Spinal Cord Independence Measure – III Self -Report. For functional assessment, we used the self-report version of the spinal cord independence measure that addresses the ability of people with spinal cord injury to perform the basic activities of daily living independently, which consisted of 19 items categorized in three subscales (Catz et al., 1997). The spinal cord independence measure III has an excellent test-retest of one week reliability (K ≥ 0.84) (Catz et al., 2007; Itzkovich et al., 2007; Glass et al., 2009; Invernizzi et al., 2010; Anderson et al., 2011; Bluvshtein et al., 2011). 12 – Item Short Form Health Survey. To assess health related quality of life, we used the self-report version of the 12 -item short form health survey which is a truncated form of the 36 – item short form health survey that assesses the impact of health on an individual's everyday life (Ware & Sherbourne, 1992). The measure addresses eight domains (Sales et al., 2015), and two summary scores are reported from the 12 -item short form health survey namely a mental component score and a physical component score. The physical component scores and mental component scores have an excellent test-retest of two weeks reliability (K = 0.89 and K = 0.76) respectively (Ware et al., 1996). 16 2.2.3. Data Analysis Since qualitative description does not include a detailed description of method of analysis, we drew on Braun and Clark (2006) original six-steps approach to thematic analysis. This approach was similar to what Braun and Clarke describe but not entirely congruent with reflexive thematic analysis (Braun & Clarke,2020); a codebook was developed given the number of investigators involved in the study, however it was not a static document. The first three authors and the principal investigator each independently open-coded four interviews. They then met to develop an initial coding guide, which was tentatively applied to subsequent interview transcripts. Additional codes were discussed and added to the coding guide and previously coded interviews were re-coded as the analysis progressed. Once all the interviews were coded, the investigators met again to identify sub-themes and themes. Data were managed using NVivo 12 qualitative coding software. Quantitative data were analyzed descriptively using SPSS statistics software by IBM. The primary trustworthiness strategies used were reflexivity, the inclusion of multiple investigators in data collection and analysis, and member checking. In terms of positionality, the first of the three authors was a Mauritian-born, female Masters’ student with training in occupational therapy. The second and third authors were both Canadian-born, Caucasian females who were Occupational Therapy Master’s students. All had previous research experience. To promote reflexivity, these authors-maintained journals that documented an overview of the interview content, their reflection of their positionality as a researcher and the potential impacts this had on participant responses. Investigators reflected on their influence on participants during the interview process and tried to avoid leading questions to allow the participants to answer without unintended expectations from the interviewer. However, we recognize that in our role as 17 investigators it was impossible to completely eliminate our influence, and we acknowledge that the findings are a reflection of this. By involving multiple researchers in the data collection and analysis we sought to benefit from and honour their complementary perspectives. Participants were given a summary of the findings and were asked to return any feedback/comments within two weeks. 2.3. Results Demographic information about the sample and descriptive information from the four standardized measures used can be found in Table 1. Participants had an average age of 55 years, just over half were men and a majority sustained a traumatic spinal cord injury. Table 1: Descriptive Data For Categorical and Continuous Variables Variables (Range) Value (N (%))/M ± SD Sex (Female) 11 (45.8%) Age (range 25 – 72) 54.6 ± 14.6 Non - traumatic 6 (25) Years since injury (range 2 – 52) 21.9 ± 16.3 Did not attend rehabilitation 8 (33.3%) 18 Variables (Range) Value (N (%))/M ± SD Unemployed 20 (83.3%) Married/common law 13 (54.1%) Living alone 8 (33.3%) Yearly gross pay (range 1-7) (1= < $14,999; 2 = $15, 000 - $29,999; 3 = $30,000 - $44,999; 4 = $45, 000 - $59,999; 5= $60,000 - $ 74,999; 6 = > $75,000); 10 participants preferred not to answer 1.8 ± 2.9 Functional ambulatory category (range 4 – 56) 4.5 ± 0.5 Life satisfaction questionnaire – 11 (range 20- 64) 42.1 ± 13.5 Spinal cord independence measure – III self-report (range 38 -100) 79.0 ±13.9 6 Level 4- ambulator independent surface only Level 5 – ambulator independent 19 12 -item short form health survey: Physical component scores (range 20 -57) 12 -item short form health survey: Mental component scores (range 22 -60) 35.1 ± 9.9 40.0 ±11.1 Our analysis identified three main themes: ‘I couldn’t go there at all’, ‘In this netherworld’, and ‘I simply refuse to give up’. Each theme had three sub-themes. 2.3.1. “I Couldn’t Go There At All” (P13, A 68 Year – Old Female, 51 Years Living With Injury) The first theme described participants' experiences of being excluded from various physical environments, social groups and/or relationships, and programs specific to their needs. This theme includes three sub-themes: navigating barriers in the built environment, feeling socially isolated following injury, and feeling excluded from spinal cord injury programs. Navigating Barriers in The Built Environment. All participants outlined various environmental barriers from many buildings and outdoor spaces, which they perceived as exclusionary. The barriers encountered included cracked and uneven sidewalks, stairs, broken elevators, cobblestones, no seating arrangements, absence of railings and automatic doors, narrow curb cuts, and the city’s hilly topography. Many participants specified how barriers in the built environment limited both their independent mobility and participation in social activities. Participant P13, a 68-year-old female who sustained her injury 51 years ago, said, ‘the cobblestones bugged me so much that if there were a neighbor three doors down, I really couldn't go, my walker couldn't handle that.’ These barriers presented unique challenges for ambulatory individuals with incomplete spinal cord injuries because they had to strategically use their walking aids to allow them to navigate their environment. Sometimes, even with their preserved 20 ability to walk, they were still unable to access places in their communities due to non - respect of the universal design7, as indicated by participant P11, a 63-year-old female living with her injury for 22 years: The area where I live is a bit hilly. So, it's difficult either to use my walker or my cane or my wheelchair and there are some streets I can't go on. I also find some of the curb cuts on the sidewalk steep. Sometimes I must get out of my wheelchair and push it up the curb cuts, then I can get back in. Some of the stores in the area I live have a step up or a couple of steps up or down to get into the stores, so of course, I don't go there. Participant P16, a 67-year-old female who has had a spinal cord injury 40 years ago, described being afraid of falling on stairs when there were no railings, which discouraged her from going to some places because of the fear of getting injured, which emphasized the importance of the impact of the built environment on participants community engagement to avoid differential treatment. Feeling Socially Isolated Following Injury. Despite the support from friends and family that was described by all participants, 15 participants reported experiencing social isolation. Some participants were already socially isolated, but this was exacerbated because of coronavirus disease regulations. Some participants noted that relationships were fractured or lost following their injury and that this harmed their mental health. This was highlighted by participant P11 who stated, Friends have sort of dropped away. So, I live quite an isolated life. Coronavirus made that 7 Italicized terms are defined in the Glossary section 21 somewhat worse, but it's an ongoing issue for me. I'm isolated and I worry about that because, I know that it can have long-term effects - on a person's wellbeing. Most participants identified some social barriers. Participant P05, a 40-year-old female who sustained her injury 11 years ago, identified challenges doing activities with more able-bodied people: Social barriers are like, “Oh, let's go for a walk!” Well sure I can go, but we're going at my pace, which is slower than abled people walk or, “let's go skiing”, or “let's go for a swim in the lake,” I can't do it. I need to have poles so that I can walk into the lake with, and then somehow get them tied to a float or something so I can swim when I'm in deep enough. Participant P13 revealed how ongoing pain due to the injury made her more isolated because her friends and family did not want to see her in agony. Feeling Excluded from Spinal Cord Injury Programs. Being in a minority group, many participants talked about a lack of programs designed specifically for ambulatory people with incomplete spinal cord injury, which deprived them of group-based opportunities/activities outside of their homes. Participant P03, a 67-year-old male living with a spinal cord injury for 17 years recounted his experience attending a spinal cord injury program: I mean a lot of the guys [with incomplete spinal cord injury] felt like they were left out, or out of place at things like peer group meetings and coffee groups, and events. They'd show up and there wouldn't be anything there that they could use [e.g., chairs]. Everything was adapted. 22 During various spinal cord injury organization gatherings, some participants felt out of place as they were one of the few people standing at these events. 2.3.2. “In this netherworld” (P23, A 67-Year-Old Male, 17 Years With Spinal Cord Injury) The second theme describes the resounding desire expressed by many participants for a better understanding from others of incomplete spinal cord injury. Half of the participants indicated how they often felt misunderstood due to the invisible or only partially visible nature of their disability to the public. This theme includes three sub-themes: facing social scrutiny, falling into the grey zone, and living with invisible disabilities. Facing Social Scrutiny. Most participants experienced social scrutiny due to their differing gaits and use of assistive devices when out in public, seeking employment, and running errands in the community. Several participants identified being out in public and receiving unwanted attention, which highlighted their corporeality. For example, participant P14, a 51-year-old female who sustained her injury 46 years ago, said: …because I look physically disabled when I’m out and about, I get stares, I get looks, I get gawks, you know it’s pretty much constant. You sometimes just must tune it out and carry on with your everyday life because you know, otherwise, it would just get to you. This extended to experiences of oppression and differential treatment while trying to find a job because this minority group was being discriminated against due to their abnormal gait. Participant P03 said ‘I couldn’t find anyone who would hire me. I’d walk into interviews as if I was a drunk because I was still trying to find my balance’. Participants reported that their slower walking pace appeared to elicit frustration in others. Participant P15, a 46-year-old male who 23 sustained his injury three years ago, exemplified this by saying: There’re always people that are in a rush and they don't even think, and you hear them grumbling under their voice: "could you hurry up, like what's your problem, why are you moving so slow?" Cause maybe, I'll use the shopping cart as a walker, it works really well for me as a walker. They think there's something wrong with you, but not that you're injured. A participant explained that many times able-bodied people have ignored or avoided him because they seem to feel uneasy around people with disabilities. In these cases, the participant’s ability to pass as someone without a disability appeared to make others less empathetic. Falling Into the Grey Zone. Due to their preserved ability to walk, some participants described experiencing a liminal identity status in that they were neither disabled nor fully abled. Participant P02 a 27 years old male who lived with his spinal cord injury for four years said: Yeah well, it's difficult sometimes for people who are able-bodied to realize that I’m obviously significantly disabled. It's just that some people, with an injury or without, can definitely have a tough time trying to comprehend the severity of my injury, but at the same time, people who can't walk only see it for the fact that I can walk. This confusion by others appeared to be internalized by all the participants and led some to grapple with their own identities and find ways to appear more or less disabled than they were to fit into these categories. One way to do this was by using mobility aids as a means to emphasize their disability to avoid social judgment. Participant P05 said: say I was pulling into a handicapped parking spot, and there were a bunch of people 24 standing around there and they were all staring at me, wondering why I would probably pull out my cane. Whether or not I needed to use it that day or not, just to avoid being questioned as to why I’m parking in a handicapped parking spot, right? The liminal experience of feeling neither fully able-bodied nor disabled left some participants feeling like they did not fit into either the spinal cord injury community or the spinal cord injury programs that were being offered as described by participant P23, a 67-year-old male who sustained his injury 17 years ago: I mean, they open their doors, they're keen to include you in things, they're excited about having you around, but… most of the people there are in more extreme situations, and they're wondering, what is this dude that looks almost normal doing here? They don't get it Beyond not fitting in, a few participants acknowledged feeling some guilt attending groups where they believed their circumstances were easier to bear compared to others who had more severe injuries. Participant P24, a 68-year-old male who sustained his injury three years ago, highlighted this, saying ‘I have it pretty good compared to what they have’, expressing a mixed sense of gratitude and guilt when attending spinal cord injury groups. Living With Invisible disabilities. Most participants identified frustration living with many invisible disabilities that were not outwardly apparent to others. These symptoms were often experienced daily. Participant P24 stated: You talk to people who are paraplegics or quadriplegics. I suffer the same problems as they do, it’s just that you can’t tell. I look normal, I walk, I don’t have any problems in 25 that regard. It’s the physical issues that are not viewable. That’s the problem. The invisible and complex nature of these impairments led to several participants feeling misunderstood by family and friends, who were not aware of the challenges they faced, as expressed by participant P08, a 72-year-old male who sustained his injury eight years ago: My friends, they… tell my wife, "[he’s] doing really good, he's getting around and all this and that." And of course, my wife got irritated with that one day with just our close friend again, and said to him as you know, "You don't see all the things that he's experiencing, all the intense pain, the lack of sleep, and bowel bladder things you have to do. Thus, many participants hoped for greater recognition of these invisible disabilities, believing this would lead to better understanding and support from friends, family, and their communities. 2.3.3. “I Simply Refuse To Give Up” (P19, A 60-Year-Old Male, 13 Years Post-Injury) This theme describes different strategies participants used to reject the label of victim and to redefine purpose and harness motivation, showcasing the perseverance that participants reported demonstrating in the face of adversity. This theme includes three sub-themes: developing resourcefulness, being thankful for social connection, and facing challenges with determination. Developing Resourcefulness. All participants shared the experience of having to adapt how they went about their day-to-day life. The activities they were able to participate in often looked very different than before their injury because of the change in bodily experience and the symptoms of their disability. Many participants talked about using compensatory strategies to adapt to physical changes and varied abilities relating to their incomplete spinal cord injury. For 26 example, participants explained how they made modifications to both their home and adaptive equipment. Participant P12, a 69-year-old male who sustained his injury 17 years ago, saved money by modifying his tricycle, as he related: although I do like the lever drive, I'm going to put a motor, I have a special motor I found from China that I put on my handcycle. It's made for going on the back of a wheelchair and it was only $1000 and about $7000 buying one from Canada that's similar but more advanced. And it works well and so I was thinking of putting that on the back of the lever drive just to help me get the distance. In addition to adjusting their adaptive equipment, many participants also mentioned making modifications to their home environment, such as adapting their kitchen or bathroom to better suit their needs. Half of the participants also specified having to implement a greater degree of planning before leaving their house because of the differential treatment that the minority group have to face, as reported by Participant P21, a 66-year-old female who sustained her injury 45 years ago, reported: So, it costs more money now to travel because I must plan different kinds of travel, not just hop on a local bus, or do other things, you have to give more thought to it and do what I call “planned spontaneity”, you can’t just be spontaneous, you need to kind of give thought and plan it out. The idea of “planned spontaneity” as suggested by participant P21 was a common strategy used by participants when leaving their homes to participate in community activities. 27 Being Thankful for Social Connections. A strong commonality shared between most of the participants was the importance of and gratitude held for social connection, whether through friends, family, their partner, or the community. The theory of complex embodiment as described in the theoretical perspective is well depicted by Participant P02 who identified the impact a community program had in building resilience and collaboratively solving problems related to their unique experiences and needs through sharing stories and ideas: What I find really cool is everybody in a room talking about their challenges. Everybody has different challenges; everybody has something they can do well and something they can’t. By the end of the conversation, a lot of people have figured out ways to solve their problems or make their challenges easier because there’s somebody else in the room who has already figured it out, so it’s very powerful. The coronavirus pandemic further complicated the extent of opportunities for some participants to socialize and compounded the extent of social isolation that individuals with incomplete spinal cord injuries experienced, as discussed in theme 1. Despite challenges with engaging in socialization due to the coronavirus pandemic, participants related the value of communicating with friends and maintaining a reciprocal relationship. Participant P07, a 62-year-old male who sustained his injury 45 years ago, said: I keep in contact with my friends, you know I make a couple of phone calls throughout the week to see how they are doing. They give me a call throughout the week to see if I need anything, things like that. It’s a very good resource, having friends. Whether through Zoom calls, phone calls, or in-person visits, many participants emphasized the importance of friendship as an opportunity to both support and receive support from another 28 person. Finally, some participants identified that their relationship with their partner was an important source of stability and resilience as described by participant P24: Other than you know, as I said, if my wife wasn’t there, I would be struggling at this point. I really would. And so, my wife has been, she’s been my rock type of thing. That’s true. She’s really helped. And I couldn’t like I said I don’t think I would be here if it wasn’t for that because there’s thoughts, you know right after, and I didn’t see a future, I didn’t see anything. And that was really difficult. This support provided him the courage to move forward in life as it is for many other participants who were grateful for their support system. Facing Challenges with Determination. Some participants reported dealing with hardships through perseverance and determination. For example, participant P08 remarked that despite the often-difficult circumstances that arose, he was proud of how he chose to see challenges as learning experiences: I always like change and challenge, so I think when I had my accident, the first thing my friend said was, “it’s going to really change your life”. I said, Yeah, it’s changing my life, but it's still life. I'm experiencing a different part of life and it's a challenge and I like it. One particular strategy for remaining optimistic was to only focus on what was in their realm of control as described by participant P17, a 28-year-old female who sustained her injury 15 years ago ‘I don’t let myself worry about the things I cannot do, I just focus on what I can do’. By focusing on what they could change rather than ruminating about life before their injury, participants reported being able to harness their creativity and experience enjoyment in activities 29 in which they previously participated with a different and new approach. For example, Participant P22, a 49-year-old male who sustained his injury 3 years ago, said: But yeah, I guess if I could never snowboard again, well all right, I'll just adaptive ski; I'll do sit-skiing. It looks pretty cool, so I'm just kind of trying to find things that I love to do that I can do no matter what. This openness towards change and seeing the positive aspects in any situation was shared belief among participants. Having the perception of challenge or change as an opportunity for growth and focusing on things only within their control were important tactics for developing a sustainable sense of resilience. 2.4. Discussion Given limited research about the experiences and challenges that ambulatory people with incomplete spinal cord injury face, we conducted a study to explore the distinct needs and strengths of this population to further identify recommendations for change. Demographically our sample was similar to population-level data from the Canadian 2014 Spinal Cord Injury Community Survey except for two areas (Noreau et al., 2014). In our study, just under half of the participants were female, whereas in the larger spinal cord injury community survey only one-quarter of the study population were females. Our sample had a similar physical health-related quality of life compared to the population norms of the spinal cord injury community survey, but had a lower mental health-related quality of life scores, with the mean scores for our sample being (40.0 ± 11.1) and the population norms of (50.8 ±11.5) (Noreau et al., 2014). 30 2.4.1. ‘I Really Couldn’t Go There’ The theory of complex embodiment (Siebers, 2009) emphasizes how the built environment provides preferential access to those with able-bodies, which marginalizes those whose bodies do not conform to those normative expectations. Although British Columbia has a reputation for being very physically accessible (Office of Housing Government standard, 2014) there are still barriers in the physical environment (Birkeland, 2018; Bonehill et al., 2020; Shuayb, 2020) that can be viewed as socially constructed forms of discrimination towards people with disabilities (Imrie, 1998; Kitchin, 1998; Hansen & Philo, 2007; Bonehill et al., 2020). The findings are congruent with ongoing “design apartheid” which was a phrase coined by Imrie (Imrie, 1998) over 20 years ago to describe “how built spaces alienate certain groups of people while favouring able-bodied needs and values as a result of power structures within the broader context of society” (Imrie, 1998, p. 129). These, accessibility barriers may discourage people with incomplete spinal cord injury from going to certain stores, restaurants, and houses, which is congruent with the environmental press theory. The environmental press theory proposes that an individual’s functioning is caused by the fit between their personal competencies and the demands the environment places upon them (Lawton & Nahemow, 1973). For example, having a set of stairs into a restaurant may cause a high level of environmental press, which may discourage people with incomplete spinal cord injury who can ambulate to dine there. If these kinds of barriers are frequently encountered it may cause them to prefer to avoid eating out. This may create a negative feedback loop as the absence of people with disabilities may lead store owners to be blind to their needs and not see them as potential customers (Goodley & Runswick, 2011). Furthermore, making the dominant group members aware of structural discrimination may 31 help build empathy and an improved understanding of the minority group’s experiences (Dirth & Branscombe, 2017). The findings about the fear of falling were not surprising given that more than 50% of individuals who ambulate report a fear of falling (Singh et al., 2021). Furthermore, the ability of people with incomplete spinal cord injury to ambulate may decline with age, because of changes in musculoskeletal, cardiovascular, and neurological systems (Goldstein, 2000; Little et al., 2000). 2.4.2. ‘In this netherworld’ Experiences of being simultaneously ‘othered’ by able-bodied individuals and by people in the spinal cord injury community, led to confusion around participants’ sense of identity. In this regard, they had a liminal identity, which prevented them from feeling fully included among either group. The way that some participants strategically used mobility devices is reminiscent of Goffman’s idea of passing (Goffman, 1963), in which people try to present themselves in ways that are perceived as more acceptable. However, in this case, participants did not always try to pass as someone who did not have a disability, but would sometimes try to pass as someone who had more disability to avoid unwanted attention (Olkin et al., 2019). Ambulatory people with incomplete spinal cord injuries do not fit neatly into the categories of able-bodied or disabled. Their liminality may represent something of a double-edged sword for people with incomplete spinal cord injury. It may allow them to attempt to pass as more able-bodied but they may end up feeling marginalized from either people with spinal cord injury if they are successful or the broader community if their attempts to pass are unsuccessful. A previous study exploring the experiences of ambulatory scooter-users, identified similar identity ambiguity as they did not fit neatly into the binary categories of able-bodied or disabled (Jang et 32 al., 2020; Perdue & Howe, 2012). Furthermore, the inherent ‘invisibleness’ of impairments commonly experienced by many people with incomplete spinal cord injuries leads to understandable difficulty for the public in recognizing and appreciating the challenges they face (Parkinson, 2005). 2.4.3. “I Simply Refuse to Give Up” The theme can be related to the minority identity theory whereby people persevere and face adversity. In many cases of minority identities, Siebers (2009) identified that people who accepted their disability or difference compared to the abled-bodied population have a more fulfilling and happy life. The theory of complex embodiment values disability as a form of human variation (Siebers, 2009). From this perspective, disability may be a source of pride because of the unique experiences and abilities of people with disabilities (Stephens, 2011). For example, the adversity experienced by people with incomplete spinal cord injury may promote resilience as they embark on a process of continual growth that raises awareness about their capacities and provides them with unique knowledge and insights (Saleebey, 2002). In this regard, experiences of disability may be regarded as a strength rather than a limitation, which reflects their inherent self-worth. This resilience may also be fostered through the support of others. In their systematic review, (Muller et al., 2012) reported that social support was important for better health outcomes such as better coping skills and life satisfaction, improved subjective well-being, and decreased risk of mortality in people with spinal cord injuries. The support of partners is especially important in this regard (Gilad et al., 2009; Dickson et al., 2012; Freeman et al., 2017) Our finding on the importance of social and family connection is congruent with previous 33 research showing the benefit of peer support, which has been shown to help learning skills, adjusting to life after injury, and facilitating participation (Webel et al., 2010; Shem et al., 2011). Peer support can provide emotional support, role modelling, and share practical knowledge which in turn lead to enhanced self-esteem, drive, and empowerment (Veith et al., 2006). 2.5. Recommendations/ Directions for Future Research The results from this study have implications for re-thinking how built environments could be designed to include people with incomplete spinal cord injuries. Particularly highlighted in this study was the importance of hand railings to support access to ambulatory individuals and the importance of disabled parking stalls that include those who use walkers or have difficulty walking long distances. Beyond conceptualizing universal design as the benchmark for built environments, our results suggest using the principles behind the universal design (a design that is accessible to all people regardless of age, disability, or ability) to create programs and services for individuals with incomplete spinal cord injury (Erlandson, 2008). As an interim approach, accessibility information could be shared to help identify whether a specific environment would be accessible for specific individuals given their unique abilities (i.e., sharing maps and evaluations by users) (Bonehill et al., 2020). Education of both able/disabled people and awareness of the needs of people with disabilities are key steps towards increasing the inclusivity of city planning, building, and product design. Future programs and services should work towards developing specific programming that considers the needs of people with incomplete spinal cord injuries. Exploring how programs could reach people who feel as though they fall into the grey zone when it comes to their identity within the spinal cord injury community should be keenly considered. In considering new programming, the voices of those with lived experience should be amplified, as 34 our results show that this group is highly resilient and perceptive when it comes to identifying barriers and creating solutions. This calls attention to the importance of using strengths-based approaches in research and practice, such as exploring an individuals’ intrinsic strengths and what is meaningful to them. Future programs should consider employing knowledge translation through educational tools that inform the public about incomplete spinal cord injury. Also, to increase awareness of this population under the spinal cord injury umbrella, as well as finding ways to create a distinct category and identity for this group of ambulatory individuals. For example, our data highlights the need for shared spaces for ambulatory individuals with incomplete spinal cord injury to jointly navigate challenges and share success stories. Future research that further uncovers the lived experiences of this population, specifically related to their experiences accessing programs and services, will lead to better awareness, visibility, and acceptance of people with incomplete spinal cord injury. 2.6. Limitations There are four main limitations to this study. First, due to the coronavirus pandemic, recruitment was done virtually, which may have excluded those who were not affiliated in some way with a spinal cord injury organization or research centre. Second, those who did not have access to some form of computer technology or telephone were unable to participate in this study. Third, using semi structured interviews can create contrived interactions. Finally, participants may have tended to downplay socially undesirable attitudes and behaviours (Latkin et al., 2017). 35 2.7. Conclusion This research highlights the experiences of people with incomplete spinal cord injury, building a greater social awareness of the strengths and challenges of these individuals. These findings will help service providers to better understand the challenges and perspectives of a subpopulation with persistent barriers to support in our current systems. This will help to facilitate a community that fosters better peer support. Finally, the results underscore the call to action for creating a design that is accessible to all people regardless of their ability. The idea of universal design is not a new concept, however, our research sheds light on the importance of expanding the lens of accessibility to include people who do not easily fit into the current understanding of disability, such as those with diverse gaits and those who use a variety of mobility aids. 36 3. Bridging Statement In the second chapter, we qualitatively explored the experiences of people with incomplete spinal cord injury who can ambulate to address the gap in our current knowledge. In chapter three, we analyzed the data using a mixed-method approach in which we used the quantitative data to divide participants into the three groups based on their quality of life. We used quantitative methods to identify measures associated with quality of life and used qualitative methods to explore the experiences of people with different levels of quality of life. At the present time, Study 1 (second chapter) has been submitted to the journal Disability and Rehabilitation and Study 2 (third chapter) is in preparation for submission. 37 4. Exploring The Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate 4.1. Introduction Spinal cord injury is relatively common and can have life-altering effects. In Canada, there are approximately 86,000 people with spinal cord injury, and 4,300 new cases each year (Noonan et al., 2012; Praxis spinal cord Institute, 2019). The number of Canadians with incomplete spinal cord injuries is increasing (Noreau et al., 2014). As Canada’s population ages, in 10 years the number of people living with spinal cord injury will likely rise to more than 120,000 (Praxis spinal cord Institute, 2019). In Canada, 52% of people have incomplete tetraplegia, 18% have incomplete paraplegia and the remainder (30%) have complete paraplegia or tetraplegia (Praxis spinal cord Institute, 2019). Depending on the extent of their injury, people with incomplete spinal cord injury frequently regain some form of functional ambulation thanks to improvements in acute rehabilitation (Brotherton et al., 2007; Noonan et al., 2012; Nijendijk et al., 2014). For example, people with an American Spinal Cord Injury Association Impairment Scale8 grade C or D are likely to ambulate (Scivoletto et al., 2014). Empirical evidence suggests that people with an incomplete spinal cord injury who can ambulate have different experiences from those with complete injuries. Although many people want to walk after spinal cord injury, a cross-sectional cohort study found that long-term ambulation post spinal cord injury was related to undesirable outcomes such as fatigue, pain, and depressive symptoms in 56% of the study participants (DiPiro et al., 2014). Several studies have suggested that the relationship between the ability to walk and quality of life may be mediated by 8 Italicized terms are defined in the Glossary section 38 both physical factors (pain, fatigue) and psychological factors (depression, frustration) (Freixes et al., 2012; Jannings & Pryor, 2012; Martin et al., 2017). A survey identified having an incomplete injury and poor mental well-being were the main factors associated with depression (Anderson et al, 2007). Another survey found that people with an American spinal injury association impairment scale9 grade D had lower social participation compared to those with American spinal injury association impairment scale grades A, B, or C (Riordan et al., 2015). Various demographic factors have been associated with a positive quality of life in combined samples (i.e., those with complete and incomplete injuries). Two systematic reviews (Sakakibara et al., 2010; Tomasone et al., 2013), a cross - sectional survey study ( Post & Reinhardt, 2015) and a case-control study (Putzke et al., 2001), identified a range of factors that positively influenced the quality of life, including getting injured at a younger age, having a lower level of spinal cord injury, being employed or married, not living in poverty, living in urban areas, getting more leisure-time physical activity, keeping a positive attitude, enjoying accessible transportation, time since injury and having recovered from any previous health issues. Our review of the literature identified few studies exploring the quality of life among people with spinal cord injury who can ambulate. People with an American spinal injury association impairment scale grade D were substantially less happy with their mental health compared to people with an American spinal injury association impairment scale grade A/B/C as reported by a Sweden cross-sectional cohort study (Jorgensen et al., 2021). A cross-sectional study from the United States reported that veterans with an American spinal injury association 9 Italicized terms are defined in the Glossary section 39 impairment scale grade D reported more pain, depressive symptoms, and general poor health compared to American spinal injury association impairment scale grade A/B/C (Ames et al., 2017). A qualitative study conducted in Australia suggested this may be attributed to a variety of potential causes such as being annoyed with the speed of completing daily activities, being exhausted from walking, feeling misunderstood owing to invisible disabilities leading to less support from the community, and having symptoms being overlooked (Jannings & Pryor, 2012). Given the limited understanding of the quality of life of people with incomplete spinal cord injury who can ambulate, especially from a Canadian perspective, we conducted a study with two main objectives: 1) to examine associations between subjective quality of life and other socio-demographic variables in this population and 2) to explore differences in experiences of people with different levels of quality of life (low, moderate, and high) using a novel mixed-methods approach. 4.2. Method This study used an explanatory design in which qualitative data were used to explain the quantitative findings; i.e., the qualitative findings built upon the quantitative findings (Creswell et al., 2003; Creswell & Plano,2011). Specifically, we used the quantitative data to identify participants with three levels of quality of life (low, moderate, and high) and to compare sociodemographic characteristics in those three groups. We explored the experiences of participants in each of these groups qualitatively. Qualitative description was the method used to analyze the qualitative data set and the qualitative findings were reported using the consolidated criteria for reporting qualitative research guidelines (Tong et al., 2007) (Appendix A). The overall study has been reported using 40 the Good Reporting of a Mixed Methods Study Framework (O’Cathain et al., 2008) as reported in Appendix E. The protocol was approved by the University of British Columbia's Behavioral Research Ethics Board and local health authorities (certificate no. H20-01478). 4.2.1. Study Participants Participants were eligible if they were: (1) diagnosed with incomplete spinal cord injury, (2) able to walk 15 meters with or without aids, (3) resided in British Columbia, (4) 19 years or older, (5) able to understand and to read English and (6) able to provide their own consent. 4.2.2. Recruitment Convenience sampling was used to recuit 24 individuals, and none dropped out. The study was advertised on the International Collaboration on Repair Discoveries website, on the Mortenson Lab Social media channels, at the GF Strong Rehabilitation Centre, and in the Spin Magazine that was distributed by Spinal Cord Injury – British Columbia quarterly. Previous study participants who indicated an interest in being notified about future studies were also contacted. 4.2.3. Data Collection Due to the Coronavirus pandemic, data were collected virtually (i.e., via zoom video conferencing). Before the interview, participants completed the standardized measures and demographic survey on an online survey program (Qualtrics). All audio was digitally recorded on the interviewer’s computer using a University of British Columbia Zoom account and was transcribed verbatim. All transcripts were password protected. More details about the data collection procedures can be found in Appendix F. Participants completed one demographic 41 survey and four standardized measures as described below and can be found in Appendix D. Demographic Survey. A demographic form was used to gather descriptive information. This survey collected data about participants’ age, sex at birth, type of spinal cord injury, number of years living with injury, employment status, living situation, education level, and marital status. Functional Ambulation Categories. Participants reported their ambulatory ability to walk 15 meters indoors according to the functional ambulation categories (Mehrholz et al., 2007). The six levels are non-functional ambulator (level zero), ambulatory dependent on physical assistance (level one), ambulator dependent on physical assistance (level two), ambulator dependent on supervision (level three), ambulator independent on flat surface only (level four) and independent ambulator (level five). A score of zero indicates one cannot walk and a score of five indicates one can walk freely. Life Satisfaction Questionnaire – 11. Life satisfaction was assessed using the life satisfaction questionnaire (Fugl – Meyer et al., 1991) consisting of 11 questions on specific domains. The 11 items in the questionnaire are life as a whole, vocation, economy, leisure, contact with friends, sexual life, daily activities, family life, partner relationship, somatic health, and psychological health. Each item gets a score of one to six depending on how satisfied the person feels. A score of one is very dissatisfied and a score of six is very satisfied (Melin et al., 2003). Spinal Cord Independence Measure – III Self-Report. Functional assessment was done using the self-report version of the Spinal cord independence measure (Catz et al., 1997) which consisted of 19 items divided into three categories: respiration and sphincter management, 42 self-care, and mobility. Each item gets a score of zero to 100, where a score of zero indicates total dependence and 100 indicates complete independence. 12- Item Short-Form Survey. Heath - related quality of life was measured using the 12 - item short form health survey (Ware & Sherbourne, 1992) consisting of 12 questions covering eight specific domains. This is a shorter version of the 36 - item short-form health survey. The eight domains are mental health, physical role, bodily pain, social functioning, vitality, general health perspective, physical functioning, and emotional health. Each item gets a score of zero to 100, zero indicating poor health and 100 indicating very good health. There are two summary scores used to calculate the overall score of the 12 – item short-form health survey namely the physical component score and the mental component score. Semi-Structured Interviews. Semi-structured interviews were conducted after participants had completed the online survey. Interviews were conducted only once and were conducted by three female graduate students who were trained in qualitative research. All three of them were master students, one was doing her master’s in rehabilitation science and the two others were doing their masters in Occupational Therapy. They were guided by the student supervisor and senior investigators who have extensive experience with mixed-methods research. Interviews lasted one hour and were one-on-one (interview + interviewee). Participants were informed to be alone in the room during the interview. No relationship was developed prior to the interviews and participants. Before the interview, none of the participants were familiar with any of the interviewers. The interview guide (Appendix C) was developed collaboratively with the research team and two patient partners. The interview guide was piloted by two patient partners who work as resource center managers and peer support coordinators at Spinal Cord - British Columbia. 43 4.2.4. Data Analysis Quantitative. To address the first research question, we divided participants into three levels of quality of life with the following cut points: low (≤ 28), moderate (29-47), and high (≥ 48). These cut points were used so that we had a relatively equal number of people in each group. Descriptive statistics data including mean and standard deviation for continuous variables; number and percentage for categorical variables were used to characterize participants in each group. To test for normality of data, we conducted Kolmogorov – Smirnov tests. Results of the test for normality are reported in Appendix G. Three scores were abnormally distributed; the physical component score of the 12 – item short-form health survey (p = 0.05), the spinal cord independence measure (p= 0.02), and the functional ambulatory categories (p=≤0.01). We looked at the relationship between quality of life and other sociodemographic variables on a bivariate level rather than comparing between the three levels of quality of life. A Spearman correlation was used for continuous variables and Mann Whitney U tests or Kruskal Wallis tests were used for categorical data. A significance level of p≤ 0.05 was used for all tests; however, it is important to consider the strength of associations (Sullivan & Feinn, 2012). In terms of effect sizes for Spearman’s rho, a negligible relationship is rs = 0.00- 0.20; a weak relationship is rs = 0.21 – 0.40; a moderate relationship is rs = 0.41 – 0.60; a strong relationship is rs = 0.61 – 0.80 and a very strong relationship is rs = 0.81 – 1.00 (Prion & Haerling, 2014). For Cohen’ D a small effect size is d =0.20, a medium-size effect is d= 0.50 and a large size effect is d= 0.80 (Cohen, 1988). For Cohen’s F, a small effect is f = 0.10, a medium effect is f = 0.25 and a large effect is f= 0.40 (Cohen, 1988). To understand better the relationship among sex, marital status, and living situation we plotted the interactions between sex and living situation, sex and 44 marital status, and living situation and marital status10 (Appendix H). Data were analyzed using the IBM SPSS software. Qualitative. To analyze the data, the transcripts for each participant were reviewed by the master’s student (in Rehabilitation Sciences) to identify potential barriers and facilitators to their quality of life. A table documenting potential barriers and facilitators to quality of life in each group (i.e., low, moderate, and high) was made. To promote the rigor of the study we used the four transcendent trustworthiness criteria identified by Morrow (2005): 1) social validity, 2) reflexivity and subjectivity, 3) adequacy of data, and 4) adequacy of interpretation. In terms of social validity, the study was suggested by people with lived experience of spinal cord injury who were part of the research team. Reflexivity and subjectivity require researchers to consider their positioning when collecting and when interpreting data (Morrow, 2005). For reflexivity and subjectivity, the three authors conducting the interviews maintained reflexive journals that documented their reflections and personal positioning. For example, they recorded how they anticipated participants would respond to each interview question. They probed for negative cases if participants were telling them things they expected to hear. Adequacy of data is concerned with the quantity and quality of data, as having a greater number of participants would guarantee the validity of the findings. Some argue that the collection of data should be done until the point of redundancy when there is no more new information to be acquired from the ongoing data collection (Dey, 1999). Redundancy also 10We were not able to produce a plot for the interaction between living situation and marital status because the sample size was too small 45 known as saturation happens when no new information emerges but questions have been raised about how this idea is operationalized (Faulkner & Trotter, 2017). Others have recommended sufficiency rather than saturation with qualitative research sufficiency (Guest et al., 2006; Fusch & Ness, 2015). Adequacy of interpretation was facilitated by involving multiple researchers in the data collection and analysis so that their complementary perspectives would enrich the findings. To promote adequacy of interpretation we addressed these criteria by doing the following: involvement of multiple researchers in data collection and analysis; creation of a casual and trusting relationship to try and make participants feel comfortable (by being friendly as opposed to being just an interviewer, when the interview finished, we let the participant continue talking about anything they wanted to add/share). Previous research has suggested that some participants are more relaxed and confident to talk because they were in their safe space (in their house) (Archibald et al., 2019). After receiving a summary of the results, participants were requested to respond with any feedback or comments within two weeks. 4.3. Results 4.3.1. Quantitative Considering the sample as a whole (n=24), it was noted in Table 2, that there were slightly more men than women (column 3). On average, most of the participants had a traumatic spinal cord injury (column 3) and most of them attended rehabilitation (column 3) after injury. Only 4 participants were employed after injury (column 3) and a majority lived with somebody (column 3). According to the three different levels of quality of life (low n=5, moderate n= 9, high n=10), 46 the majority of participants in the low quality of life group (column 4) were females whereas the majority of participants in the high quality of life group (column 6) were males. The two columns (column 7 and column 8) report the effect size. A strong correlation was found between the life satisfaction questionnaire and the 12 - item short-form health survey (physical component scores and mental component scores). Number of years living with injury was almost significant (p =0.05) and had a negative moderate correlation. Men, people who attended rehabilitation and people who were married appeared to have a higher quality of life (large effect sizes). Not shown in the table, based on the plots (Appendix H) there appeared to be an interaction between sex and living situation. Men and women who lived alone had similar low quality of life. Men living with someone else had the highest quality of life, whereas women living with others had the lowest quality of life. Comparing sex and marital status, men who were married had the highest quality of life whereas women who were married seemed to have similar quality of life as single men. Unmarried women had a lower quality of life. Due to a small sample size, we were unable to generate a plot to explore the relationship between marital status and living situation. 47 Table 2: Mann - Whitney U, Kruskal - Wallis, Spearman Correlation, Cohen’s D, Cohen’s F With Demographic Factors, Standardized Measures, and 3 Levels of Quality of Life Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Gender Male Female 13 (54.16) [48.31±10.68] 11 (45.83) [34.82± 13.28] 1 (20.00) 4 (80.00) 4 (44.44) 5 (55.56) 8 (80.00) 2 (20.00) 30.001 1.12 0.02 Type of injury4 Traumatic Non-Traumatic 14 (58.30) [45.79±13.05] 6 (25.00) [40.67± 14.62] 2 (40.00) 1 (20.00) 4(44.44) 3(33.33) 8 (80.00) 2 (20.00) 32.001 0.29 0.41 48 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Level of spinal cord injury Cervical Thoracic Lumbar 9 (37.50) 6 (25.00) 9 (37.50) - 2 (40.00) 3 (60.00) 4 (44.44) 2 (22.22) 3 (33.33) 4 (40.00) 3 (30.00) 3 (30.00) (0.58)2 (0.03) 0.75 Attended rehabilitation Yes No 16 (66.67) [46.38±10.36] 8 (33.33) [33.62±15.76] 1 (20.00) 4 (80.00) 7 (77.78) 2 (22.22) 8 (80.00) 2 (20.00) 29.001 0.957 0.032 49 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Employed Yes No 4 (16.67) [43.75±16.86] 20 (83.33) [41.80±13.28] 1 (20.00) 4 (80.00) 1 (11.11) 8 (88.89) 2 (20.00) 8(80.00) 34.501 0.13 0.67 Marital Status Never married/Separated/ Divorce Married/ Common Law 11 (45.83) [35.27±14.16] 13 (54.17) [47.92± 10.24] 5 (100.00) - 3 (33.33) 6 (66.67) 3 (30.00) 7 (70.00) 37.001 1.02 0.04 50 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Location of residence City Suburban Rural 13 (54.16) 7 (29.17) 4 (16.67) 3 (60.00) - 2 (40.00) 3 (33.33) 5 (55.56) 1 (11.11) 7 (70.00) 2 (20.00) 1 (10.00) (1.49)2 (0.06) 0.48 Living situation Live alone Live with somebody 8 (33.33) [37.00±14.21] 16 (66.67) [44.69± 12.88] 3 (60.00) 2 (40.00) 3 (33.33) 6 (66.67) 2 (20.00) 8 (80.00) 44.501 0.57 0.23 51 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Level of education 2=High school 3=College/Trade School 4=University degree 5=Graduate studies 6=Postgraduate 7 (29.17) 5 (20.83) 5 (20.83) 4 (16.67) 3 (12.50) [3.60 ± 1.14] [3.56±1.51] [3.70±1.57] [0.07]3 - 0.72 Number of Years Living with an injury (2 – 52) [21.88 ± 16.30] [26.20±16.92] [27.67±18.53] [14.50±12.01] [-0.40] 3 - 0.05 52 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Gross annual income 5 1=< $ 14,999 2=$15, 000 - $29,999 3=$ 30,000 - $ 44,999 4=$ 45,000 - $ 59,999 5=$ 60,000 - $ 74,999 6=> $75,000 [1.83 ± 2.88] [2.20 ± 2.39] [0.78±2.39] [2.60±3.44] [0.15] 3 - 0.48 Age (Years) (27 – 72) [54.75 ± 14.60] [50.60±15.44] [54.22±12.17] [57.30±16.95] [0.19]3 - 0.37 53 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P 12 – item Short-form health survey Mental component scores 12 – item Short-form health survey Physical component scores (22 -60) (20 -57) [39.95 ± 11.11] [35.10 ± 9.86] [29.77±5.29] [28.99±10.36] [36.04±7.34] [29.95±4.63] [48.56±9.99] [42.80±8.27] [0.74]3 [0.68]3 - - <0.01 <0.01 54 Variable Label (Potential range) [Mean ± SD] / N (%) Low Quality of Life (N=5) N (%)/ Mean ± SD Moderate Quality of life (N=9) N (%)/ [Mean ± SD] High Quality of Life (N=10) N (%)/ [Mean ± SD] Statistic 1U/ 2(H) / 3[rs] Cohen’s d / (f) P Spinal cord independence measure - III (38 -100) [79.04 ±13.90] [70.20±18.19] [75.44±13.72] [86.70±7.62] [0.34]3 - 0.11 Functional ambulatory categories 4=Ambulate independently level surface only 5=Ambulate independently 12 (50.00) [38.50±12.52] 12 (50.00) [45.75±14.08] 3(60.00) 2(40.00) 6(66.67) 3(33.33) 3(30.00) 7(70.00) 46.501 0.54 0.14 Life satisfaction (20- 64) [42.13 ± 13.54] [22±2.35] [39±4.44] [55±5.46] - - - 55 questionnaire – 11 1 U: Mann - Whitney U 2 H: Kruskal – Wallis 3 rs: Spearman correlation 4 Type of injury: 4 participants did not know the type of injury 5 Gross income: 10 participants preferred not to answer 56 4.3.2. Qualitative Table 3, described barriers and facilitators to quality of life derived from interview data. People in the low quality of life group experienced more barriers compared to those in the high quality of life who had more facilitators and very few barriers. A balance between facilitators and barriers to quality of life was identified in the moderate quality of life group. Some issues were facilitators in one group and barriers in another group, e.g., social support was a facilitator in the high quality of life group but was a barrier in the low quality of life group. Other issues seemed to overlap many times in between groups, e.g., learning to adapt to life after the injury was a facilitator for both groups in moderate and high quality of life, and feeling judged was a barrier for both low and moderate quality of life groups. 57 Table 3: Potential Reason for The Quality-of-Life Ratings Low Quality of life (P1, P6, P11, P13, P14) Moderate Quality of life (P4, P5, P7, P9, P10, P15, P16, P18, P20) High Quality of life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) Potential Barriers to Quality of Life • Feeling socially isolated • Having financial concerns • Feeling judged by abled-bodied people • Feeling left out due to City layout and buildings not wheelchair friendly • Expressing that spinal cord injury was due to medical negligence • Describing their deteriorating mobility • Feeling judged • Describing their deteriorating mobility • Feeling socially isolated o Coronavirus disease restriction • Having financial concerns • Feeling left out due to o lack of resources for people with disabilities Feeling left out due to o The city layout and buildings are not wheelchair friendly o Spinal cord injury programs are designed for people with complete spinal cord injury spinal • Feeling frustrated by Coronavirus disease restrictions 58 Low Quality of life (P1, P6, P11, P13, P14) Moderate Quality of life (P4, P5, P7, P9, P10, P15, P16, P18, P20) High Quality of life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) Potential Barriers to Quality of Life • Feeling left out due to lack of resources for people with disabilities o The city layout and buildings are not wheelchair friendly o spinal cord injury programs are designed for people with complete spinal cord injury • Describing secondary complications of spinal cord injury Passing as a person with disabilities 59 Low Quality of life (P1, P6, P11, P13, P14) Moderate Quality of life (P4, P5, P7, P9, P10, P15, P16, P18, P20) High Quality of life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) Potential Facilitators to Quality of Life • Learning to adapt to life after injury • Learning to adapt to life after injury • Appreciating their support system o Having social Support • Having financial stability • Feeling included in spinal cord injury programs • Benefiting from coronavirus disease restrictions such as o Improved the financial situation • Learning to adapt to life after injury o Demonstrating resilience • Appreciating their support system o Feeling included in spinal cord injury programs and community o Having family support o Social support • Benefiting from coronavirus restrictions such a 60 Low Quality of life (P1, P6, P11, P13, P14) Moderate Quality of life (P4, P5, P7, P9, P10, P15, P16, P18, P20) High Quality of life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) Potential Facilitators to Quality of Life o Improved access to medical care • Benefiting from o adapted/ modified house o Benefiting from City layout and buildings wheelchair friendly • Expressing gratitude to still be able to walk • Experiencing little difference with day-to-day life during coronavirus restrictions • Having financial stability • Benefiting from o adapted/ modified house o Benefiting from City layout and buildings wheelchair friendly • Benefiting from coronavirus restrictions such as 61 Low Quality of life (P1, P6, P11, P13, P14) Moderate Quality of life (P4, P5, P7, P9, P10, P15, P16, P18, P20) High Quality of life (P3, P2, P8, P17, P12, P19, P21, P22, P23, P24) Potential Facilitators to Quality of Life o Improved social life o Improved access to medical care Being able to ambulate without an assistive device • Expressing gratitude 62 To illustrate the findings further we provided quotes from participants in the section that follows. Low Quality of Life (N= 5). Participants in this group described six factors that they perceived negatively affected their quality of life: feeling socially isolated, having financial concerns, feeling judged, feeling left out due to city layout and infrastructure being not wheelchair or walker-friendly, expressing that spinal cord injury was caused due to medical negligence and describing their deteriorating mobility. In this group, only one participant described one factor (ability to adapt to injury) that positively impacted their quality of life. Three participants described their friends ended their friendship following their injuries. As noted in Table 4, P11 attributed this to problems they had with pain and not getting equipment in a timely manner. With the start of the coronavirus restrictions, all the participants in the low quality of life group felt extremely isolated for a variety of reasons. For example, three participants lived alone or were restricted to limited social interactions because of fear of contracting the disease, travel restrictions, and quarantine measures. Despite the possibility of virtual communication, these participants preferred in-person interactions as expressed by participant P14 in Table 4. Participant P06, a 31-year-old male injured in the lumbar region described how the pandemic restrictions made him feel even more socially isolated. He had a small group of friends and they had stopped seeing each other because of coronavirus restrictions. As the pandemic progressed his group of friends grew smaller, which made him spend more time playing games on his computer. Four participants indicated that their limited income led to unmet medical needs, and the inability to acquire important assistive devices such as a foot orthosis or powered wheelchair. 63 Most of them were unemployed (n=4) and depended only on their disability pension, so they explained how expensive medical equipment was, as noted by Participant P06 in Table 4. All participants in the low quality of life expressed concerns about very expensive medical equipment. Participant P14 suggested to remove taxes on medical equipment to increase affordability in the equipment that people need in terms of daily living that could lead to a better quality of life. Participants reported three types of social-environmental barriers to quality of life as a result of being judged by abled-bodied people: being invisible, being hyper-visible, and being treated inhumanely. All participants in the low quality of life group reported feeling ignored by able-bodied people at times. P14 expressed how they made her feel invisible as described in Table 4. All five participants described being stigmatized which they attributed to the use of a mobility device or having an impairment that was visible to others (e.g., limping). P14 reported how she experienced prejudice in Table 4. Two participants related some events when they felt being treated inhumanly. Participant 13 a female 68 years old who is injured at L3-L5, had to stop going to pottery workshops because she felt excluded by others who attended. Participant P06 described that other people perceived him as a “half-person” because he used a wheelchair which could cause some people to look down on him figuratively and literally. More than half of the participants in this group experienced the loss of independence because of the city’s unsupportive infrastructure such as having no curb cuts, narrow sidewalks, presence of cobblestone/ stairs, hilly topography, and broken elevators. Participant P11 reported how accessibility challenges made it difficult to get around in table 4. Participants explained that some places that were supposedly accessible turned out to be inaccessible in practice. Participant P14 indicated that a lot of buildings are not completely accessible for people with a disability, 64 because they do not have an accessible washroom or have multi-levels with no (functioning) elevators. Four out of five participants indicated they did not have any formal rehabilitation after their injury, which they felt could have improved their lives considerably. Participant P01 was refused multiple times to get rehabilitation and was very vocal that if she has not been denied care her health would not have deteriorated as noted in Table 4. All participants in this group indicated how ongoing secondary health conditions (e.g., ongoing pain, spasticity, and tiredness) made daily life challenging (e.g., simple activities required a lot of planning, extra energy, and necessitated rest) and caused degradation in mobility. Participant P13 reported she felt like she was prematurely aging in Table 4. Three participants reported how their walking fluctuated and ultimately deteriorated after their injury. Participant P06 indicated his gait had worsened over time post-injury. He started from walking with a cane to no cane, to a walker, and then now uses a wheelchair for outdoor activities instead of his walker. 65 Table 4: Low Quality of Life Quotes Organized by Factor Topic Quotation Participant information Feeling socially isolated Losing friends because of pain intolerance I have ongoing and significant pain, difficulty sitting, and difficulty walking. I can't sit in an upright position for very long without pain, I can sit in my wheelchair for about two hours but I couldn't sit in a regular kitchen chair on a couch. I wasn't able to go to see friends anymore for lunch or coffee because I couldn't sit. I went a long time without a wheelchair before I was finally approved for one P11, female, 63 years old, T6 Losing human contact and preferred in-person interaction I miss some of the important people in my life because we are not able to connect in the same way. Phone calls are not the same as actually going out and meeting people, person to person, and doing something fun together or going out for a meal or hanging out at a social event, it’s not the same connection P14, female, 51 years old, thoracic 66 Topic Quotation Participant information Having financial concerns Identifying financial need as a barrier for participation That’s been a barrier because of the low income that I get from my pension. If I wanted to get an electric assistive device this is kind of expensive, I do need home adaptations right now, but those cost a high price so I have to adapt myself to my house set up for the time being which is tiring and consumes most of my energy. P06, a 31-year-old male, injured in the lumbar region Being judged Feeling invisible That’s pretty much an everyday occurrence. People treat me like this because I’m physically disabled and think I’m mentally disabled and they’ll ask the person I’m with the question, instead of asking me, which is very infuriating because I’m an adult and you know, highly competent, I can talk for myself”. P14, female, 51 years old, thoracic Experiencing prejudice Discrimination happens all the time because people have attitudinal barriers. They’re straight-up rude and basically kind of treat you like you’re a non-human. And that pretty much is all the time because I look physically disabled when I’m out and about, I get stares, I get looks, it’s pretty much constant. P14, female, 51 years old, thoracic 67 Topic Quotation Participant information Feeling left out due to city layout and infrastructure Experiencing accessibility challenges in the built environment The area where I live is a bit hilly. So, it's difficult either using my walker/ my cane /my wheelchair; there are some streets I can't go on. I find that some of those curb cuts on the sidewalk are steep and sometimes I have to get out of my wheelchair and push it up the curb cuts, then I can get back in. Some of the stores in the area I live have a couple of steps up or down, to get into the stores, so of course, I don't go there. If a place is not wheelchair accessible, I don't go there. P11, female, 63 years old, T6 Expressing that spinal cord injury was due to medical negligence Expressing deterioration in health due to medical negligence If I would've had the machine to help me breathe, my health, my walking, and everything else would never have deteriorated. I never had to end up in the hospital and now I have to go to the hospital to see a cardiologist, all because I didn't get the right rehabilitation for my deteriorating leg, hip, and back muscles with the machine to help me breathe P01, female, 40 years old, T6-T7 68 Topic Quotation Participant information Expressing a degradation in mobility Feeling like prematurely aging It's like living with a 121-year-old woman, that's what I'm like. I bring in the groceries from the car using the walker, I'll be paralyzed in bed for 8 - 14 hours. So right after I - I lie in bed for 13 hours, sometimes slept all day, like I was just paralyzed, just couldn't do a thing. in six months, I'll get paralyzed 130 times and could not move P13, female, 68-year-old, L3-L5 69 Moderate Quality of Life (N= 9). Participants in this group described two factors that appeared to affect their quality of life negatively: feeling judged and decreasing mobility. Similar to the low quality of life group, all participants in the moderate quality of life group reported feeling judged or discriminated against. Furthermore, all nine participants stated that they have been challenged by abled-bodied people, and some of them reported being stared at or abled–bodied people would be whispering among them. Participant P16 described her experience in Table 5. In contrast, one participant P09 in this group described having a positive interaction with abled-bodied people as described in Table 5. Two participants mentioned that they understood the curiosity and the avoidance of some people towards people with a disability. Participant P20, 60 years old female living injured at L3-L4 indicated she is no longer surprised and does not feel it is a problem when people avoid her. because she believes that abled–bodied people might not know how to approach people with disabilities Like those in the low quality of life group, more than half of these participants reported mobility challenges. For example, P18 related how his gait deteriorated following surgery in Table 5. Participants (N= 5) in the moderate quality of life group described leg weakness. P07, a 62 years old male, had a motor vehicle accident 45 years ago and was injured at the C6-C7 level, related that before he could climb a couple of stairs but now after so many years with the spinal cord injury, he has trouble climbing stairs and would fall too many times. Sometimes he can usually tell if he is about to fall over, but other times his legs would just give out and he would fall over and be lying flat on the ground for minutes or hours until he feels his legs again. Participants in this group described three factors that appeared to positively affect the quality of life: learning to adapt to life after injury, appreciating their support system (family and 70 social support), and having financial stability. Seven participants indicated how they used devices and adapted to their environments. Participant P09 explained in Table 5, how she navigated through challenges. After their injury, seven participants explained how they got used to and accepted things that they cannot do. Participant 10, a female 46 years old injured at C5-C6 for eight years described how she learned to overcome chronic pain as noted in Table 5. It was still difficult for four participants to adapt especially when pain is always lingering. They said that with pain, any simple task would twice the time to complete, others related having to lie down for 1 hour to calm down the pain, this can be related to what participant 10 said in Table 5. Participant P10 described that her days were always planned, there was no spontaneity in what she did because planning helped her to perform better during the day and have her routine going. She indicated that everything needed to be planned to avoid wasting energy, experiencing muscles spasm, or increasing pain. Most of the participants in this group (n=7) indicated family support was important for recovery. They appreciated their social support which included their family and others. P04, a 36 years old female with a congenital spinal birth defect (C5 – C6 is fused) described in Table 5 how much she felt blessed to be well surrounded. Four participants considered themselves lucky to have social support because this gave them the courage to keep moving in life, overcome obstacles, and maintain good mental health as expressed by Participant P07 in Table 5. One participant felt fortunate to be part of a supportive community. When the wife of participant P20 (60 years old male injured at L3-L4) is away at work, he reported he could rely on his neighbors for help. More than half of the participants (N=5) did not describe having major financial barriers. Participant P10 expressed gratitude for financial stability as stated in Table 5. Five 71 participants were grateful they were able to maintain financial stability during the coronavirus pandemic restrictions as described by Participant P09 in table 5.72 Table 5: Moderate Quality of Life Quotes Organized by Factor Topic Quotation Participant information Feeling judged Feeling hyper-visible They don’t realize maybe how disabled I am, why I’m disabled, or why I’m using a cane. So, even when I’m in a wheelchair, I always have my canes with me (move or go somewhere, where I can’t go with my wheelchair), so if I stand up and use the canes, I kind of get this look, oh why are you using your canes? Why are you using a chair then? I might get a strange look P16, female, 67 years old, C3-C4 Expressing a positive experience with abled bodied people I've been lucky because, in pickleball and ping pong and all the other sport-type activities I wanted to join, I never had to join through a disability-specific organization because I've always been accepted by able-bodied people to join as a guy in a wheelchair P09, male, 67 years old, C6- C7 73 Topic Quotation Participant information Experiencing a decrease in mobility Acknowledging a decrease in mobility after surgery Before I could walk with 2 poles, but now I cannot walk with them instead I have to use a walker, without the walker it's just that I look like I’m a little drunk because my coordination is not there all the time. My equilibrium is not what it used to be, if I unexpectedly come on a change in the terrain I'm walking on, it's a big problem for me because I can't react normally and could end up falling. I look like I'm drunk really and that saddens me P18, male, 54 years old, lumbar Learning to adapt to life after injury Navigating through challenges I have turned my wheelchair into a tricycle, Vancouver is full of hills, now I am able to go up and down hills. The apartment that I have, has been completely modified for accessibility, I have a cooktop and a kitchen sink that can come down to my level, and the entire washroom is accessible for me in my wheelchair. So, my apartment does not have barriers for me P09, male, 67 years old, C6- C7 74 Topic Quotation Participant information Learning to adapt to life after injury Making peace with things I cannot do I would be getting up most of the mornings with back pain, but I had been living with back pain the majority of the time, and I've just gotten used to it. And I functioned with it P10, female, 46 years old, C5-C6 Adjusting to their routine My day is very limited in what I did in my day. A lot of tasks would take me twice as long to do. I have to make sure I'm not sitting too long because then the pain kicks in, but at the same time, I can't do movement for long periods. If I do go on the treadmill, I need to sleep that day for 20 minutes to an hour P10, female, 46 years old, C5-C6 Appreciating their support system Feeling blessed to have support I'll have meetings with my pastor who's also a good friend, so mentally, I do alright. With my boyfriend's family and abled-bodied friends I feel [I am] in an inclusive environment and it just I feel supported P04, female, 36 years old, C5 – C6 75 Topic Quotation Participant information Appreciating their support system Expressing a support system gives courage to keep moving forward in life I have friends and they are always looking for places for me to rest, which is nice. We’ll just sit here for a while. Because they know I have limits and I do get tired. They don’t want me to fall over because then they have to pick me up - which has happened a few times. P07, male, 62 years old male, C6-C7 Having financial stability Showing gratitude that partner still has a job At the moment I'm very fortunate with my husband that he has a good job and he's working. At the moment we're okay financially. P10, female, 46 years old, C5-C6 Feeling fortunate for financial stability I'm very fortunate that I did not lose my job [because of the pandemic]. I worked for 5 years after my accident, then I retired. I have a good federal pension, so coronavirus has had no impact and my accident has had minimal impact. I was well insured when I had my accident so that helped me very well. I have no financial issues that arise after my accident. I don't have to wait for approval P09, male, 67 years old, C6- C7 76 for spending money, to go somewhere, whatever it is. 77 High Quality of Life (N=10). Participants in this group described a variety of factors that appeared to positively affect their quality of life: demonstrating resilience, learning to adapt to life after injury, appreciating their support system (family and social support, feeling included in spinal cord injury programs and community), experiencing little difference with day-to-day life during coronavirus restrictions and having financial stability Many of the participants (N=7) demonstrated resilience by emphasizing the determination they exhibited to recover after their injuries as Participant P03 described in Table 6. Among the 10 participants, seven participants experienced ongoing physical improvements. P22 who now can walk 50 meters without any walking support reported this in Table 6. Participant P17 is a 28-year-old female, injured at the thoracic level, explained that seeing progression since her injury kept her determined to do more, and also not letting herself worry about the things she cannot do and just focusing more on what she can do instead. Similar to the moderate quality of life, participants (N=8) in the high quality of life group described how they successfully adapted their life after injury. Participant P08 related how he reinterpreted things to adapt his life according to his injury as described in Table 6. Participant P02 is a 27 years male, who has had a C4 – C6 spinal cord injury for four years and has a lot of determination to live his life to the fullest. He explained that if he wanted to get out into places that he used to go to before his accident, then he will do it, even if he has to take his power-assisted wheelchair instead of the walking poles he would do it. The power-assisted wheelchair would allow him to go up and down some trails which he loved doing before his injury. More than half of the participants in the high quality of life group, like those in the 78 moderate quality of life group, valued their support system. Seven participants emphasized the importance of having family or social support to enhance mental well-being as participant P24 explained in Table 6. Six participants felt part of a community with shared beliefs, common interests, and common experiences. The spinal cord injury groups were very powerful as expressed by participant 24 in Table 6. P19, a 60 years old male injured at the thoracic level for 13 years, related how the peer support group gave him the courage to accomplish his goals. Half of the participants from the high quality of life group experienced little difference in day-to-day life during coronavirus restrictions. Participant P23 a 67 years old male, injured at L4-L5 explained that coronavirus did not change anything in their routine because he and his wife were retired and spent most of their time at home. Two participants (P03, P21 (66 years old female, T11-T12)) reported that they were already isolated before the coronavirus pandemic because of their immunocompromised system. Participants (N= 5) in the high quality of life group were financially stable, as were those in the moderate quality of life group. P12 who is a 69 years old male and had a C2-C3 spinal cord injury 17 years ago, expressed that he has been financially stable through the settlement money he got from his lawsuit and the money he got from a program [self-managed care option for home support services]. 79 Table 6: High Quality of Life Quotes Organized by Factor Topic Quotation Participant information Demonstrating resilience Expressing determination to recover from injury It took me three months to make it out to the end of the driveway after I got out of the hospital. I must've fallen at least twice a day. My problem was my feet, I'd be walking along and all of a sudden one leg would go out. It took a long time to learn to keep the feet going where I wanted to, even after I managed to learn to get the feet to go where I wanted to, I had to watch it. I could go for a walk but I wouldn't see anything besides the concrete (laugh) P03, male, 67 years old, C5-C6 Seeing progress over time Recently because I'm still seeing progressing like I'm still seeing improvement in my recovery, so that's why I'm still attacking this uh as aggressively, now I can walk 50 meters without needing a walking device, and I feel fortunate that I can walk P22, male, 49 years old, C6 80 Topic Quotation Participant information Learning to adapt to life after injury Facing challenges I don't look at barriers, I look at them more like challenges, I usually come up with a way of um modifying something so I can still do it. I'll give you an example I started deer hunting, and my wife said, "Why don't you go and get some venison," because I grew up on that when we were young with our families. So, I got my bow and go out and did that, but I couldn't carry the deer on my shoulders as I could before, so I made a kind of a sled and a harness and ski poles. P08, male, 72 years old, lumbar Appreciating their support system Being thankful for having support If my wife, wasn’t there, I would be struggling at this point. I really would. she’s been my rock type of thing. She’s really helped, like I said I don’t think I would be here if it wasn’t for that because there’s thoughts, you know right after, and I didn’t see a future, I didn’t see anything. And that was really difficult P24, male, 68 years old, L3-L5 81 Topic Quotation Participant information Appreciating their support system Feeling a sense of belongingness to a group I feel included and welcomed [at the spinal cord injury organization]. Well, I have the same problems, in terms of bowels and bladder, if you went to a family physician, they may see one or two cases in their whole time, in their practice. Whereas, the people who specialize in this, so, or the people in the ambulatory group, you’re talking to people who do it 24/7, and have these problems. So, they have much better answers than, the doctors. So, it’s quite good and powerful to have this cohort. Just talking to each other about the problems we face P24, male, 68 years old, L3-L5 82 4.4. Discussion This study explored the quality-of-life experiences of people with incomplete spinal cord injury who can ambulate with a special focus on North Americans. This is the only study that we are aware of that has identified factors associated with different levels of quality of life in this population. Also, this study is novel because we were able to outline and discover specific perceptions of participant’s based on their quality-of-life indicators. Another novelty is that it is one of the first studies in this area since the start of the coronavirus pandemic. The findings emphasize the detrimental effects of coronavirus on the quality of life of people with incomplete spinal cord injury who can ambulate. We have organized our discussion as follows: contributors to low quality of life, barriers to quality of life among those with low and moderate quality of life, facilitators to quality of life among those with moderate and high quality of life, and facilitators to a high quality of life. Contributors To Low Quality of Life Our findings emphasize five main potential contributors to lower quality of life: social isolation, unemployment, secondary complications, not attending rehabilitation and number of years living with injury. Qualitatively, social isolation appeared to be an important contributor to low quality of life; quantitatively, living alone versus with others demonstrated a moderate effect size, which may have been exacerbated by pandemic-related lockdowns. Similar findings were reported in a cross-sectional study (Riordan et al., 2015). Potential reasons for social isolation that have been identified included; challenges in participating in meaningful community activities because of problems with the built (e.g., accessibility) and social (e.g., discrimination) environment (Brown et al., 2002; Whiteneck et al., 2004; Barclay et al., 2011). Low quality of life may be related to stigmatization in terms of how people with incomplete spinal cord injury 83 are treated by others, but also in terms of how they may have internalized negative attitudes towards people with disabilities (i.e., self-stigma) (Watson & Larson, 2007). Unemployment, which is a common issue among people with either complete or incomplete spinal cord injury, appeared to be associated with a lower level of quality of life qualitatively and quantitatively (i.e., medium effect size). The finding that more than half of the participants were unemployed and depended on pensions or compensation for their day-to-day life was congruent with Canadian data that reported, that 72 % of people with spinal cord injury who are of working age get some type of financial compensation and 59% are unemployed (Praxis Spinal Cord Institute, 2019). Work-related travel has become inextricably linked to economic activity, making employment and the ability to move inseparable (Cresswell et al., 2016). From the results, 80% of participants identified the environment or the infrastructure as a barrier to community mobility. This corresponds with a Sweden study that reported people with spinal cord injury felt that environmental factors including infrastructure and transportation among others are key determinants of good quality of life (Kerstin et al., 2006). Lack of employment may negatively affect people’s sense of self-worth and may reflect problems managing secondary health conditions, and may have financial implications (Craig et al., 2015; Conti et al., 2019). Our findings emphasize on how secondary complications such as pain, fatigue, depression, and frustration are common in people with spinal cord injury (Freixes et al., 2012; Jannings & Pryor, 2012; Martin et al., 2017) and have adverse effects on their quality of life. This is similar to the previous cross-sectional and qualitative exploration studies that reported secondary complications such as pain and spasticity may exacerbate fatigue, and in turn have an adverse effect on emotional and physical well-being (DiPiro et al., 2014; Ames et al., 2017; Jorgensen et 84 al., 2021). A lack of rehabilitation, which was identified as a contributor to lower quality of life in our sample, has previously been found to be associated with increased secondary complications and lower functional status, which negatively impacts the quality of life (Van Koppenhagen et al., 2009; Noreau et al., 2014; Stillman et al., 2017; Rivers et al., 2018). Our study findings emphasize the potential long-term benefits of rehabilitation, which demonstrated a large effect size. There are mixed findings about the relationship between the number of years post injury and quality of life. Some studies showed a positive relationship (Bushnik 2002; Bushnik & Charlifue, 2005; DeVivo & Chen, 2011; Kalpakjian et al., 2011; Kemp & Krause, 1999; Koppenhagen et al., 2009; Krause, 1992; Krause & Coker, 2006; Post & Reinhardt, 2015; Putzke et al., 2002; Stensman,1994; van Leeuwen et al., 2011) and some demonstrated stability (i.e., Charlifue et al. 1998; Charlifue et al., 1999; Charlifue & Gerhart, 2004; Pershouse et al., 2012; Savic et al., 2010). Others, similar to ours, show a negative relationship (Charlifue et al., 1998; Krause, 1997). A few caveats with the previous studies are that they are quite dated (i.e., most were published over 20 years ago and they drew on longitudinal data that was sometimes collected over a 30-year time frame). Most of the participants in these studies would have had complete injuries, so it may be that our findings are more reflective of people with incomplete injuries. This idea was reinforced by several participants in the lower quality of life group who described perceiving they were aging prematurely. Barriers To Quality of Life Among Those with Low and Moderate Quality of Life Our findings point to two other major potential barriers to quality of life: feeling judged and mobility deterioration. Participants in the low and moderate quality of life groups reported feeling judged because of challenges with their gait and ambiguity of the nature of their 85 impairments. This negative experience is unique to this population of people with incomplete injuries who can walk compared to people with complete injuries who rely on wheelchairs. This finding is consistent with a qualitative study conducted in Australia which noted that people with incomplete spinal cord injury who can walk felt misunderstood owing to the uncertain nature of their disabilities (because wheelchairs are clear disability signifiers), and reported receiving less support from the community, and described having symptoms being overlooked (Jannings & Pryor, 2012). The prejudice they experience likely reflects the stigma associated with things like mobility assistive technology and gait abnormalities. It may also be reinforced by self-stigma (Goffman, 1963) if people with incomplete spinal cord injury have internalized these negative public attitudes (Vogel et al., 2013). To avoid social stigma, some people with disabilities will attempt to “pass” as someone without a disability (Goffman, 1963) which is passing up and sometimes people would be passing down that is the person accentuates his disability. Passing may reflect internalized oppression if it is intended to promote assimilation. It may also be an act of resistance if someone passes strategically to avoid social oppression (Kanuha, 1999). Many participants in both the low and moderate quality of life groups experienced mobility deterioration. The ability to ambulate (i.e., from functional ambulatory categories outcome measure) revealed a small effect size quantitatively but qualitatively mobility was an important factor. Several previous studies have reported that deterioration in the ability to walk may lead to increases in fatigue, dependence on others, and time required to complete daily activities, which contribute to reduced quality of life (Putzke et al., 2002; Martin et al., 2010; Freixes et al., 2012; Jannings & Pryor, 2012). 86 Facilitators To Quality of Life Among Those with Moderate and High Quality of Life Our findings emphasize three main potential facilitators to moderate and high quality of life: adapting to life after injury, social and family support, and financial stability. More than half of the participants from each group (moderate and high quality of life) adapted their lives to their injury in various ways and this, in turn, had a positive effect on quality of life. This result is congruent with three studies on social-ecological resilience; that found that when people are faced with a lot of challenges, they have the ability to adjust to different situations in the occurrence of a change in the environment, especially unanticipated changes, in ways that continue to support the well-being of a person (Abramson et al., 2010; Cicchetti, 2010; Tol et al., 2011; Kassis et al., 2013) The finding that most participants in the high quality of life group were married or living with someone and this variable had a large effect size resonates with previous studies showing similar findings (Dowler et al., 2001; Putzke et al., 2001; Dijkers, 2005; Kagawa – Singer et al., 2010; Jorgensen et al., 2017) [19, 63-66]. These studies suggested this may be attributed to the social support couples give each other; so, the relationship might have been stronger if we had measured marital quality (Carr et al., 2014). Peer group support and a strong community are very important for this isolated population because there is a lot of shared experience which is not seen in the general population. More than half of the participants in this group emphasized the importance of peer support, which is congruent with findings from three studies that reported in-person peer support meetings to be a highly effective way of sharing knowledge, developing skills, and decreasing secondary complications in people with spinal cord injury (Veith et al., 2006; Ljungberg et al., 2011; Hass et al., 2013). Recognizing other people with spinal cord injury as peers may promote a positive 87 social identity. This shared identity may be a source of pride for people with disabilities (Siebers, 2009), which may also promote quality of life. More than 50% of participants in both groups of moderate and high quality of life described being financially stable. Although a positive relationship between income and quality of life was not found quantitatively, this may be due to the large proportion of missing data. Not surprisingly, other studies among people with spinal cord injury and other disabilities have found that not living in poverty has a positive influence on the quality of life (Dijkers, 2005; Kulik et al., 2016; Martz & Livneh, 2016). Facilitators to High Quality of Life Two possible facilitators of high quality of life are highlighted in our research: resilience and being male. Our findings suggested that resilient people led a better quality of life. Seven out of 10 participants who had a high quality of life appeared to demonstrate resilience (e.g., had a positive attitude, did not give up on challenges, and were happier). This aligns with the results of two studies that concluded resilient people are less distressed emotionally, have positive thinking, have less anxiety, and are happier (Fujikawa et al., 2013; White al., 2010). According to research done on resilience, the protective mechanism that is responsible for survival is not just individual but is just as likely to be a social and ecological feature of a person's existence (Masten, 2011; Theron et al., 2015; Ungar, 2015;). Around 70% of participants in this group adapted their routine and life to their injury which is congruent with two studies that found that people with spinal cord injury are known for their positive adjustment and tenacity, with research suggesting that over 60% of persons with spinal cord injury adjust/adapt effectively following injury (deRoon-Cassini et al., 2010; Bonanno et al., 2012). 88 Being male was associated with a higher quality of life and demonstrated a large effect size. In this group, 80% of participants were male which is congruent with a study that found that being male had a positive impact on quality of life (Kulik et al., 2016). This is in contrast to two previous studies that found men had poorer long-term poor quality of life after a spinal cord injury (Putzke et al., 2002; van Leeuwen et al., 2011) which may be due to the fact that people with incomplete spinal cord injury may not have the same health complications as people with complete spinal cord injury. Our current finding may reflect trends in the general population, which have found older men report a higher quality of life than older women which has been attributed to gender inequities (Lee et al., 2020). 4.5. Limitations and Future Directions The study had three main limitations. For qualitative analysis the sample was large, but for quantitative analysis, it was relatively small and multiple comparisons were made, which increases the potential for Type I and Type II errors. The use of non-parametric tests also likely decreased the power to detect significant differences. The cross-sectional nature of the study precludes making causal attributions. Findings from this study could inform a variety of future studies. Although we measured many relevant variables, there are other potential confounding variables, such as resiliency, which could be collected and analyzed in a study with a larger sample size. A thorough intersectional analysis could help understand how disability intersects with other identities in a way that contributes to experiences of privilege or oppression. 89 4.6. Conclusion People with incomplete spinal cord injury who can ambulate share many of the same challenges as other people with complete spinal cord injuries such as secondary complications, socially isolated, and financial constraints, but have some unique experiences regarding the stigma associated with those who can potentially pass as someone without a spinal cord injury, unsupportive infrastructure, and physical environment, lack of programs designed specifically for people with incomplete spinal cord injury who can ambulate and degradation in mobility. Service providers should evaluate their programming to ensure it is inclusive of people with spinal cord injury who can ambulate and may consider offering some specific programming targeting this group. For example, this could involve sensitivity training for the general population, which would help to reduce negative attitudes and misperceptions of invisible disabilities and promote inclusion. Findings from this study also suggest the need to improve the built and social environment for people with incomplete spinal cord injury. To reduce healthcare inequalities, changes are needed to the way the equipment and support services are provided to this population. These changes may help to address inequalities which will ultimately improve the quality of life of people with this type of spinal cord injury. 90 5. Personal Reflection Academically and personally, the completion of my thesis has both challenged and widened my perspectives. I have previously worked with children who had developmental and physical disabilities, older adults in residential care homes, and acute patients in a hospital setting who had strokes, spinal cord injury, and were coping with mental health issues. In my previous work I only focused on addressing the injury or the impairment. I now realize that I really did not think about the broader challenges that come with a disability and how these individuals may feel invisible or be discriminated against. Before this study, I did not even know that people with incomplete spinal cord injury who can ambulate had invisible disabilities and I might have been prejudiced towards them. Through this research, I was able to gain a better insight into the experiences of these individuals who I now recognize make up a substantial number of people with spinal cord injury. I learned a lot about their daily struggle with lingering pain, their willingness to adapt their life to their injury, their ability to be resilient and how the environment can make them more disabled and dependent on others. In terms of research, I had previously worked only on quantitative research but for this project, I pushed myself to use both qualitative and mixed-methods designs and to incorporate a variety of theories into my work. I now have a much better appreciation for qualitative research. Qualitative research allowed me to explore questions about human experience that would have been difficult to quantify. It also helped me make sense of the quantitative data. Initially I was hesitant to engage with theory because I was too worried about being too deductive with my analysis. But as I went through my graduate training, I began to understand 91 how theory could be helpful to help me think about the world around me, to help me develop a more nuanced understanding of participant’s experiences. For example, Goffman’s talked about passing in his theory of social stigma and when I read the theory, I was not convinced of why we needed this theory in my writing. Then after hearing about the life experiences of people with incomplete spinal cord injury who can ambulate, the theory all made sense, for example, people were hiding or exaggerating their disability to avoid being questioned. I have also noted that theory gives you a hint of what to look for, for example from Goffman theory of stigma, during interviews I made sure we covered questions about stigma and once we start talking about this topic, participants had so many experiences to share. Coronavirus disease was a challenge but also a learning opportunity for me. I had anticipated conducting most interviews in person. I, therefore, needed to learn how to successfully conduct qualitative interviews virtually. I suspect if I had been able to interview people in person it would have been easier to develop a sense of rapport and pick up on more subtle non-verbal communication. It also would have had more opportunity to observe participants either in their own homes or coming and going from the places they were interviewed which would have added to the richness of the data. That said, there were a number of advantages of virtual interviews for me and my participants. For me, doing interviews via video conferencing saved a lot of time and also conducting interviews in my own environment gave me more control over any external stimuli (e.g., in case my internet connection failed, I knew what to do). It was faster to transcribe because of the auto-transcription feature, which required a review of the accuracy, but generally did increase the speed of the transcription process. There were several advantages for participants as it enabled them to participate without 92 worry about contracting or spreading coronavirus, it allowed for people from more remote parts of the province to participate more easily, and it reduced inconvenience for them in terms of hosting visitors to their homes or time spent traveling. There were two main ideas that I will take away from this research. First is the need for society to evolve toward a more inclusive paradigm that provides more equitable opportunities for people with disabilities. Second is based on the saying “do not judge a book by its cover”, I am trying to avoid judging people by just looking at their physical appearance because all participants in this study were struggling with invisible disabilities and these struggles were frequently made worse by the judgements of abled bodied people. 93 6. Conclusion This mixed-methods, paper-based thesis reported the finding from two studies. These are the first studies we are aware of that have explored the experiences of people with incomplete spinal cord injury since the start of the global pandemic. The qualitative study explored the experiences of people with incomplete spinal cord injury who can ambulate. It revealed that despite experiencing a variety of physical and social barriers and sometimes feeling discriminated against, most participants demonstrated resiliency in the face of these challenges. The findings suggest the need for better community integration in this population. This would involve improvements in the built and social environment to enable better inclusion of people with incomplete spinal cord injury (e.g., ensuring there is adequate seating at events intended for people with spinal cord injury, not assuming all people with spinal cord injury use wheelchairs, sensitivity training for people without spinal cord injury). The mixed-method study examined variables associated with quality of life in this population and identified potential reasons why people with incomplete spinal cord injury may experience different levels of quality of life. The quantitative portion revealed that the variables, being of male sex, having attended rehabilitation, and being married were strongly associated with increased quality of life. The qualitative portion suggested people with a low quality of life struggled to deal with an unsupportive neighborhood-built environment. Participants with low and moderate levels of quality-of-life reported feeling devalued by able-bodied people and reported worsening mobility over time. The findings suggested that the neighbourhood - built environment can be improved and there is the need to raise awareness which would help to reduce negative attitudes and misperceptions about invisible disabilities and promote inclusion. 94 These changes may ultimately improve the quality of life of people with this type of spinal cord injury. 95 Bibliography Abramson, D. M., Park, Y. S., Stehling-Ariza, T., & Redlener, I. (2010). Children as bellwethers of recovery: dysfunctional systems and the effects of parents, households, and neighborhoods on serious emotional disturbance in children after Hurricane Katrina. Disaster medicine and public health preparedness, 4 Suppl 1, S17–S27. https://doi.org/10.1001/dmp.2010.7 Ackery, A., Tator, C., & Krassioukov, A. (2004). A global perspective on spinal cord injury epidemiology. 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The barriers, benefits, and facilitators of leisure time physical activity among people with spinal cord injury: a meta-synthesis of qualitative findings. Health psychology review, 8(4), 404–425. https://doi.org/10.1080/17437199.2014.898406 Wilson, J. R., Grossman, R. G., Frankowski, R. F., Kiss, A., Davis, A. M., Kulkarni, A. V., Harrop, J. S., Aarabi, B., Vaccaro, A., Tator, C. H., Dvorak, M., Shaffrey, C. I., Harkema, S., Guest, J. D., & Fehlings, M. G. (2012). A clinical prediction model for long-term functional outcome after traumatic spinal cord injury based on acute clinical and imaging factors. Journal of neurotrauma, 29(13), 2263–2271. https://doi.org/10.1089/neu.2012.2417 Wong, E., Cronin, L., Griffith, L., Irvine, E. J., & Guyatt, G. H. (2001). Problems of HRQL assessment: how much is too much? Journal of clinical epidemiology, 54(11), 1081–1085. https://doi.org/10.1016/s0895-4356(01)00393-6 World Health Organisation. (2013, November 19). Spinal Cord Injury. https://www.who.int/news-room/fact-sheets/detail/spinal-cord-injury Xavier, F. M., Ferraz, M. P., Marc, N., Escosteguy, N. U., & Moriguchi, E. H. (2003). Elderly people's definition of quality of life. Revista brasileira de psiquiatria (Sao Paulo, Brazil: 1999), 25(1), 31–39. https://doi.org/10.1590/s1516-44462003000100007 123 Appendices Appendix A: Consolidated Criteria For Reporting Qualitative Research Checklist Topic Item No Guide questions/ Description Reported on Page No. Domain 1: Research team and reflexivity Personal characteristics Interviewer/facilitator 1 Which author/s conducted the interview or focus group? 13, 42 Credentials 2 What were the researcher’s credentials? E.g., PhD, MD 16, 42 Occupation 3 What was their occupation at the time of the study? 16, 42 Gender 4 Was the researcher male or female? 16, 42 Experience and training 5 What experience or training did the researcher have? 13,16, 42 Relationship with participants Relationship established 6 Was a relationship established prior to study commencement? 13, 42 124 Participant knowledge of the interviewer 7 What did the participants know about the researcher? e.g., personal goals, reasons for doing the research 13, 42 Interviewer characteristics 8 What characteristics were reported about the inter viewer/facilitator. Bias, assumptions, reasons, and interests in the research topic 16, 44-45 Domain 2: Study design Theoretical framework Methodological orientation and Theory 9 What methodological orientation was stated to underpin the study? e.g., grounded theory, discourse analysis, ethnography, phenomenology, content analysis 12, 39 Participant selection Sampling 10 How were participants selected? e.g., purposive, convenience, consecutive, snowball 13, 40 Method of approach 11 How were participants approached? e.g., face-to-face, telephone, mail, email 13,40 125 Sample size 12 How many participants were in the study? 13, 40 Non-participation 13 How many people refused to participate or dropped out? Reasons? 13, 40 Setting Setting of data collection 14 Where was the data collected? e.g., home, clinic, workplace 13, 40 Presence of nonparticipants 15 Was anyone else present besides the participants and researchers? 13, 42 Description of sample 16 What are the important characteristics of the sample? e.g., demographic data, date 13, 40 Data collection Interview guide 17 Were questions, prompts, guides provided by the authors? Was it pilot tested? 14, 42 Repeat interviews 18 Were repeat interviews carried out? If yes, how many? 13, 42 Audio/visual recording 19 Did the research use audio or visual recording to collect the data? 13, 40 Field notes 20 Were field notes made during and/or after the 16, 44 126 interview or focus group? Duration 21 what was the duration of the inter views or focus group? 13, 42 Data saturation 22 Was data saturation discussed? 44 Transcripts returned 23 Were transcripts returned to participants for comment and/or correction? 17, 45 Domain 3: analysis and findings Data analysis Number of data coders 24 How many data coders coded the data? 16, 44 Description of the coding tree 25 Did authors provide a description of the coding tree? 16, 56 Derivation of themes 26 Were themes identified in advance or derived from the data? 16, 56-61 Software 27 What software, if applicable, was used to manage the data? 16, 44 Participant checking 28 Did participants provide feedback on the findings? 16, 45 127 Reporting Quotations presented 29 Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g., participant number 19-29, 62-81 Data and findings consistent 30 Was there consistency between the data presented and the findings? 29-34, 82-88 Clarity of major themes 31 Were major themes clearly presented in the findings? 19-29, 62-81 Clarity of minor themes 32 Is there a description of diverse cases or discussion of minor themes? 19-29, 62-81 128 Appendix B: Consent Form Understanding the experiences and quality of life of people with incomplete spinal cord injury who are able to ambulate (H20-01478) Principal Investigator: Ben Mortenson, PhD Associate Professor, Department of Occupational Science and Occupational Therapy, University of British Columbia Principle Investigator, International Collaboration on Repair Recoveries (ICORD) Co-Investigators: Murveena Jeawon, B. Sc Graduate Student, Department of Occupational Science and Occupational Therapy, University of British Columbia Jocelyn Maffin, Manager BC SCI Resource Center, SCI-BC Bethany Hase, B.Sc. Graduate Student, Department of Occupational Science and Occupational Therapy, University of British Columbia Susanna Miller, B.A. Graduate Student, Department of Occupational Science and Occupational Therapy, University of British Columbia 129 Primary Contact: Murveena Jeawon 1. INVITATION TO PARTICIPATE We are looking for people with incomplete spinal cord injury who can walk for short distances, with or without aids to share their experiences and identify ways to better address their needs. 2. YOUR PARTICIPATION IS VOLUNTARY Your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study. Before you decide, it is important for you to understand what the research involves. This consent form will tell you about the study, why the research is being done, what will happen to you during the study as well as the possible benefits, risks, and discomforts. If you wish to participate, you will be asked to sign this form. If you decide to take part in this study, you are still free to withdraw at any time and without giving any reasons for your decision. If you do not wish to participate, you do not have to provide any reason for your decision not to participate, nor will you lose the benefit of any medical care to which you are entitled or are presently receiving. Please take time to read the following information carefully and to discuss it with your family, and/ or friends before you decide. 3. WHO IS CONDUCTING THIS STUDY? Researchers from the University of British Columbia, International Collaboration on Repair Discoveries and Spinal Cord Injury – British Columbia, are conducting this study. Since the study is a student-led project as a part of a graduate program, graduate students from the University of British Columbia will also be part of the conducting the study. 130 4. BACKGROUND Given the increasing prevalence of people with incomplete spinal cord injury who can ambulate, challenges of living with invisible complications, and questions about the suitability of existing programs, we need to find better ways to address the needs of this population. 5. WHAT IS THE PURPOSE OF THE STUDY? The objectives of this study are 1) to identify the distinct needs and strengths of people with incomplete spinal cord injury who can ambulate, and 2) to explore potential supports, services, and programs that would best enable this population to adjust, adapt and thrive in the community. 6. WHO CAN PARTICIPATE IN THE STUDY? You are eligible to participate in this study if you: 1. Are a person with an incomplete spinal cord injury who can ambulate for short distances, with or without aids. 2. Are 19+ years old 3. Understand written and spoken English 4. Are able to provide your own consent 5. Are a resident of British Columbia 7. WHAT DOES THE STUDY INVOLVE? The study involves two parts: (1) an interview and (2) completion of a demographic survey and four online-standardized questionnaires. The interview portion of the study will be conducted via Zoom or telephone calls. The questionnaires can be accessed via an online survey program (Qualtrics) or conducted over the phone if access to the computer is limited. 131 The required time for participation is approximately 75 minutes. The study procedure will be explained to you in simple terms. You will also be asked to provide written consent prior to participation in the study. If you are interested in taking part in this study, we will talk to you to determine if you meet the eligibility requirements. If you agree to take part in this study, the procedure and you can expect will include the following: Data Collection Semi-structured interviews will be conducted by graduate students under the supervision of the senior investigator. To maintain physical distancing, the interviews will be conducted via Zoom or telephone. All interviews conducted either via phone or using the Zoom service will be recorded and encrypted. If you choose to conduct your interview via Zoom, we would like to inform you that Zoom servers are located outside of Canada and Zoom stores your name and information regarding your use of the site outside Canada. To protect your privacy, please change your display name to a nickname. You can also turn off your camera and mute your microphone when you are not using them. During the interview, please make sure you are alone in your room with no other person around. Further instructions on how to use Zoom will be given in an email reminder sent prior to your interview. We will use an online survey program (Qualtrics) to administer the demographic survey and the standardized measures of function, health and life satisfaction or administer them via telephone for those who lack internet access or are unable to complete because of difficulty with hand function. Interviews on the telephone will be transcribed verbatim. Audio will be recorded and encrypted. Electronically data will be stored on University British Columbia computers and will be 132 encrypted. The following self-report measures will be used: Functional Ambulatory Categories, Spinal Cord Independence Measure – III self - report (function), Life Satisfaction Questionnaire – 11 (life satisfaction) and the 12 -item short form health survey (health). 8. WHAT ARE THE POSSIBLE HARMS AND DISCOMFORTS OF PARTICIPATING? The risks in this study are minimal. Interview questions will be used to gain a deeper understanding of participants’ experiences, which may involve self-disclosure on topics of a personal nature. You are free to choose to answer any questions. 9. WHAT ARE THE POTENTIAL BENEFITS OF PARTICIPATING? There are no benefits to individuals for participating in this study other than contributing to the advancement of knowledge. Your results will assist in providing a better understanding of the needs of people with incomplete spinal cord injury who are able to ambulate, in order to improve their experiences. The results of the study will be used by our community research partner (Spinal cord injury – British Columbia) that initiated this project, to provide better peer support and encourage inclusion in the community. The findings will also help the spinal cord injury community advocate for practice and policy changes, which may ultimately improve the quality of their lives. 10. HOW WILL MY TAKING PART IN THIS STUDY BE KEPT CONFIDENTIAL? Your confidentiality will be respected. At your first session, you will be assigned a participant number and all the collected data will be identified only by this number. No information that discloses your identity will be released or published without your specific consent to the disclosure. However, research records and medical records identifying you may be inspected in the presence of the Investigator, and the University of British Columbia Research Ethics Board for monitoring 133 the research. No records, which identify you by name or initials, will be allowed to leave the Investigators' offices, only de-identified data will be used in the data analysis. 11. REIMBURSEMENT You will be provided with $40 stipend to recognize the time taken to participate in this study. You can choose to have this sent to you via Interact e-transfer or via a mailed cheque. 12. WHAT HAPPENS IF SOMETHING GOES WRONG? By signing this form, you do not give up any of your legal rights and you do not release the study doctor, participating institutions, or anyone else from their legal and professional duties. 13. WHAT WILL HAPPEN IF I DECIDE TO WITHDRAW FROM THE STUDY? You are entitled to withdraw from the study at any point. No questions will be asked regarding your reason for withdrawing from the study. 14. WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT THE STUDY DURING MY PARTICIPATION? If you have any questions or desire further information about this study before or during participation, you can contact Murveena Jeawon. 15. WHO DO I CONTACT IF I HAVE QUESTIONS ABOUT MY RIGHTS AS A RESEARCH PARTICIPANT? 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 University of British Columbia Office of Research Ethics. 134 Check List ● I have read and understood the information in this consent form. ● I have had enough time to think about the information provided. ● I have been able to ask for advice if needed. ● I have been able to ask questions and have had satisfactory responses to my questions. ● I understand that all of the information collected will be kept confidential and that the result will only be used for scientific purposes. ● I understand that my participation in this study is voluntary. ● I understand that I am completely free at any time to refuse to participate or to withdraw from this study at any time, and that this will not change the quality of care that I receive. ● I understand that I am not waiving any of my legal rights as a result of signing this consent form. ● I understand that there is no guarantee that this study will provide any benefits to me (if applicable). ● I have read this form and I freely consent to participate in this study. ● I have been told that I will receive a dated and signed copy of this form. Participant Consent Your participation in this study is entirely voluntary and you may refuse to participate or withdraw from the study at any time without penalty or loss of benefits to which you are otherwise entitled. Your future medical care will not be affected. Signing this consent form in no way limits your legal rights against the sponsor, investigators, or anyone else. Your signature below indicates that you have received a signed and dated copy of this consent form for your own records. 135 Your signature indicates that you consent to your participation in this study. ____________________________________________ _____________________________ Participant’s Signature Date ___________________________________________ Printed Name of the Participant signing above ____________________________________________ _____________________________ Signature of Person Obtaining Consent Date ___________________________________________ Printed Name *I would like a copy of the report from this research yes no If yes, please provide address or email for where to send it: Ethics ID Number: (H20-01478) 136 Appendix C: Interview Guide 1) How did you come to have a spinal cord injury? 2) What is a current typical day for you right now? a. To what extent, if any, has your day/routine changed with the start of the coronavirus pandemic? 3) How do you typically move around? (clarify any questions based on demographics form e.g., prompt: In what circumstances, if any, do you use mobility devices?) a. How would you describe your ability to walk? Prompt: Category Interpretation Non-functional ambulator Ambulator, dependent on physical assistance – Level 1 Indicates a patient who requires continuous manual contact to support body weight as well as to maintain balance or to assist coordination. Ambulator, dependent on physical assistance – Level 2 Indicates a patient who requires intermittent or continuous light touch to assist balance or coordination. Ambulator, dependent on supervision Indicates a patient who can ambulate on level surface without manual contact of another person but requires standby guarding of one person either for safety or verbal cueing. 137 Ambulator, independent level surface only Indicates a patient who can ambulate independently on level surface but requires supervision to negotiate (e.g., stairs, inclines, nonlevel surfaces). Ambulator, independent Indicates a patient who can walk everywhere independently, including stairs. b. What effect, if any, has coronavirus has on your mobility in the community? 4) “Thinking about yourself, I would like you to give as many different answers as you can to the question, ‘Who am I?’ a. What are your interactions like with other people with spinal cord injury or other disabilities? b. To what extent, if any, do you consider yourself to be a member of the spinal cord injury community? c. What other communities, if any, do you feel like you are a member of? 5) There is an idea called ‘passing’ in which a person tries to alter the way they are perceived to help them fit in better. a. What, if any, situations are there where you have tried to pass as someone without a disability/impairment? b. What, if any, situations are there where you have tried to appear less able-bodied? 6) How would you describe your social life? a. How satisfied are you with your social support? b. To what extent do you feel included? 138 i. Optional: What have been your experiences with loneliness since your SCI? 7) What are some of the things in your environment that represent barriers for you? a. What are some of the things in your environment that represent resources for you? b. What are your experiences in terms of accessibility? c. Have there been any additional barriers since the coronavirus pandemic? 8) What, if any, financial barriers do you experience in the community? a. How satisfied are you with your finances? 9) How well, if at all, do you feel your needs are currently being met? a. How well were your needs being met before coronavirus? b. What, if any, would you currently identify as some of your outstanding needs? 10) What, if any, formal programs are you involved in? a. Are they SCI specific? b. What are your experiences with x program? 11) What, if any, programs are you aware of but do not participate in? a. What are your reasons for not participating? Prompt egg: To what extent do you feel included/ welcome; feel that not using a wheelchair is a barrier to feel included 12) What do you feel is working well for you right now? a. What do you feel are some of your strengths? 13) What change would you like to see for people like yourself? 139 Appendix D: Demographic Survey and Outcome Measures Demographic Survey Date: ___________________ Participant No: ___________ (1) Age: (in years) ____________ (2) Sex: ❑ Male ❑ Female ❑ Other ❑ Prefer not to answer (3) Province: ____________ (4) City: ____________ (5) Ethnicity (Select all that apply) ❑ Aboriginal (e.g., status, non-status, Metis, Inuit) ❑ Arab (e.g., Saudi, Egyptian, etc.) ❑ Black ❑ Chinese ❑ Filipino ❑ Japanese ❑ Korean ❑ Latin American ❑ South Asian (e.g., East Indian, Pakistani, Sri Lankan, etc.) ❑ Southeast Asian (e.g., Cambodian, Indonesian, Laotian, Vietnamese, etc.) ❑ West Asian (e.g., Afghan, Iranian, etc.) ❑ White ❑ Prefer not to answer 140 Other (please specify) ____________ Spinal cord injury (6) When did you sustain your spinal cord injury? (month) ____ and (year)________ (7) Was your spinal cord injury? ❑ Traumatic ❑ Non-traumatic ❑ Do not know (8) What is the level of your spinal cord injury (include vertebral level if known)? ❑ Cervical ______________ ❑ Thoracic _____________ ❑ Lumbar ______________ ❑ Sacral _______________ (9) What is your AIS (American Spinal Injury Association Impairment Scale) classification? ❑ A (Sensory Complete) ❑ B (Sensory incomplete) ❑ C (Motor incomplete) ❑ D (Motor incomplete) ❑ Do not know (10) Did you receive inpatient rehabilitation? ❑ Yes ❑ No 141 (11) If applicable, when were you discharged from inpatient rehabilitation? (month) ____ and (year) ______ (12) If applicable, did you receive your inpatient rehabilitation in Canada? ❑ Yes ❑ No (what country did you receive your inpatient rehabilitation in? ______________) Living situation (13) What is your marital status? (check the option that best applies) ❑ Single / never married ❑ Common law ❑ Married ❑ Separated ❑ Divorced ❑ Widowed (14) Where do you live? (check the option that best applies) ❑ House or townhouse ❑ An apartment or condo ❑ In an assisted living center or group home ❑ In a long-term-care facility or nursing home ❑ Other (specify) __________________________________________ (15) Do you live alone? ❑ Yes ❑ No 142 If No, please specify (select all that apply) ❑ Live alone ❑ Spouse/ partner ❑ Other family ❑ Friend ❑ Paid caregiver ❑ Other___________ (16) How would you best describe your location of residence? ❑ City ❑ Suburban ❑ Rural School/ Employment (17) Were you employed prior to your injury? ❑ Yes, full-time ❑ Yes, part-time ❑ No (18) Are you currently employed? ❑ Yes, full-time ❑ Yes, part-time ❑ No If No, how would you describe yourself? ❑ Homemaker (home duties) 143 ❑ Retired ❑ Unemployed ❑ Student ❑ Volunteer ❑ Other ___________________ (19) What, if any, was your most recent occupation? ______________________________________ (20) What is your highest level of education completed? ❑ Less than high school ❑ High school ❑ College or trade school ❑ University degree ❑ Graduate studies ❑ Post graduate studies (21) What is your gross annual household income? ❑ <$14 999 ❑ $15 000 - $29 999 ❑ $30 000 - $44 999 ❑ $45 000 - $59 999 ❑ $60 000 - $74 999 ❑ >$75 000 ❑ Prefer to not answer 144 Mobility (22) What is your primary means of mobility? (Select one) ❑ Walking with no assistance ❑ Assisted walking (e.g., crutches, walker, cane) ❑ Manual wheelchair ❑ Power wheelchair/ scooter (23) If applicable, what is your secondary means of mobility? (Select all apply) ❑ Walking no assistance ❑ Assisted walking (e.g., crutches, walker, cane) ❑ Manual wheelchair ❑ Power wheelchair/ Scooter ❑ Not applicable (24) With or without crutches, canes, or a walker: a) Do you walk to move around your house more than 50% of the time? ❑ Yes ❑ No b) Do you walk to move about outdoors more than 50% of the time? ❑ Yes ❑ No c) Do you walk to move about inside buildings outside your home more than 50% of the time? ❑ Yes 145 ❑ No (25) How would you describe your ability to transfer? (Select one) ❑ Independent without equipment ❑ Independent with sliding board ❑ Hoist or lift ❑ Person assist (26) Are you able to stand? (Select one) ❑ Yes, without assistance ❑ Yes, with assistance ❑ No Technology use (27) Do you have internet access at home? ❑ Yes ❑ No If No, how, if at all, do you access the internet? ___________ ___________ ___________ (28) Which of the following devices do you use on a regular basis? (Select all that apply) ❑ Laptop ❑ Tablet or iPad ❑ Smartphone ❑ Dedicated e-reader 146 ❑ Desktop computer Language Spoken (29) Do you speak a language other than English at home? ❑ Yes ❑ No (30) What is (are) the language(s)? _______________________________________ 147 Functional Ambulation Categories Patient ID: Date: Score Category Interpretation 0 Non-functional ambulator 1 Ambulator, dependent on physical assistance – Level 1 Indicates a patient who requires continuous manual contact to support body weight as well as to maintain balance or to assist coordination. 2 Ambulator, dependent on physical assistance – Level 2 Indicates a patient who requires intermittent or continuous light touch to assist balance or coordination. 3 Ambulator, dependent on supervision Indicates a patient who can ambulate on level surface without manual contact of another person but requires standby guarding of one person either for safety or verbal cueing. 4 Ambulator, independent level surface only Indicates a patient who can ambulate independently on level surface but requires supervision to negotiate (e.g., stairs, inclines, nonlevel surfaces). 5 Ambulator, independent Indicates a patient who can walk everywhere independently, including stairs. 148 Life Satisfaction Questionnaire – 11 Patient ID : Date : How satisfactory are these different aspects of your life? Indicate the number which best suits your situation for each of these statements. 1= very dissatisfying 4= rather satisfying 2= dissatisfying 5= satisfying 3 = rather dissatisfying 6= very satisfying Score: (1 – 6) Life as a whole is _____ My vocational situation is _____ My financial situation is _____ My leisure situation is _____ My contacts with friends and acquaintances are _____ My sexual life is _____ My ability to manage my self-care (dressing, hygiene, transfers, etc.) is _____ My family life is ☐ have no family _____ My partnership relation is ☐ have no steady partner relationship _____ My Physical health is _____ My psychological health is _____ 149 Sum 150 Spinal Cord Independence Measure (Version III, Self-report) Patient ID: Date: Examiner Name This section asks about functioning in activities of daily living. For each item, please check next to the statement that best reflects your current situation. Please read the text carefully and only check one in each section. 1. Eating and drinking 0. I need artificial feeding or a stomach tube 0. I need total assistance with eating/drinking 1. I need partial assistance with eating/drinking or for putting on/taking off adaptive devices 2. I eat/drink independently, but I need adaptive devices or assistance for cutting food, pouring drinks, or opening containers 3. I eat/drink independently without assistance or adaptive devices 2. (a)Washing your upper body and head Washing your upper body and head includes soaping and drying, and using a water tap. 0. I need total assistance 1. I need partial assistance 2. I am independent but need adaptive devices or specific equipment (e.g., bars, chair) 3. I am independent and do not need adaptive devices or specific equipment (b) Washing your lower body 151 Washing your lower body includes soaping and drying, and using a water tap. 0. I need total assistance 1. I need partial assistance 2. I am independent but need adaptive devices or specific equipment (e.g., bars, chair) 3. I am independent and do not need adaptive devices or specific equipment 3. (a) Dressing your upper body Dressing the upper body includes putting on and taking off clothes like t-shirts, blouses, shirts, bras, shawls, or orthoses (e.g., arm splint, neck brace, corset). Easy-to-dress clothes are those without buttons, zippers, or laces. Difficult-to-dress clothes are those with buttons, zippers, or laces. 0. I need total assistance 1. I need partial assistance, even with easy-to-dress clothes 2. I do not need assistance with easy-to-dress clothes, but I need adaptive devices or specific equipment 3. I am independent with easy-to-dress clothes and only need assistance or adaptive devices or a specific setting with difficult-to-dress clothes 4. I am completely independent (b) Dressing your lower body Dressing the lower body includes putting on and taking off clothes like shorts, trousers, shoes, socks, belts, or orthoses (e.g., leg splint) Easy-to-dress clothes are those without buttons, zippers, or laces. Difficult-to-dress clothes are those with buttons, zippers, or laces. 0. I need total assistance 152 1. I need partial assistance, even with easy-to-dress clothes 2. I do not need assistance with easy-to-dress clothes, but I need adaptive devices or specific equipment 3. I am independent with easy-to-dress clothes and only need assistance or adaptive devices or a specific setting with difficult-to-dress clothes 4. I am completely independent 4. Grooming Please think about activities such as washing hands and face, brushing teeth, combing hair, shaving, or applying makeup 0. I need total assistance 1. I need partial assistance 2. I am independent with adaptive devices 3. I am independent without adaptive devices 5. Breathing Please check only one, depending on whether or not you need a respiratory (tracheal) tube I need a respiratory (tracheal) tube… 0. as well as permanent or from time-to-time assisted ventilation 2. as well as extra oxygen and a lot of assistance in coughing or respiratory tube management 4. as well as little assistance in coughing or respiratory tube management I do not need a respiratory (tracheal) tube… 153 6. but I need extra oxygen or a lot of assistance in coughing or a mask (e.g., positive end- expiratory pressure (PEEP)) or assisted ventilation from time to time (e.g., bilevel positive airway pressure (BIPAP)) 8. and only little assistance or stimulation for coughing 10. and can breathe and cough independently without any assistance or adaptive device 6. Bladder management Please think about the way you empty your bladder. [Scoring of items 6: see appendix A] (a) Use of an indwelling catheter 0. Yes → Please go to question 7a 1. No → Please also answer questions 6b and 6c (b) Intermittent catheterization 0. I need total assistance 1. I do it myself with assistance (self-catheterization) 2. I do it myself without assistance (self-catheterization) 3. I do not use it (c) Use of external drainage instruments (e.g., condom catheter, diapers, sanitary napkins) 0. I need total assistance for using them 1. I need partial assistance for using them 2. I use them without assistance 3. I am continent with urine and do not use external drainage instruments 154 7. Bowel management [scoring of items 7: see appendix B] (a) Do you need assistance with bowel management (e.g., for applying suppositories)? 0. Yes 1. No (b) My bowel movements are… 0. irregular or seldom (less than once in 3 days) 1. regular (at least once every 3 days) (c) Faecal incontinence (‘accidents’) happens… 0. twice a month or more 1. once a month 2. not at all 8. Using the toilet Please think about the use of the toilet, cleaning your genital area and hands, putting on and taking off clothes, and the use of sanitary napkins or diapers. 0. I need total assistance 1. I need partial assistance and cannot clean myself 2. I need partial assistance but can clean myself 4. I do not need assistance but I need adaptive devices (e.g., bars) or a special setting e.g., wheelchair accessible toilet) 5. I do not need any assistance, adaptive devices, or a special setting 9. How many of the following four activities can you perform without assistance or electrical aids 155 - turning your upper body in bed - turning your lower body in bed - sitting up in a bed - doing push-ups in wheelchair (with or without adaptive devices) 0. none, I need assistance in all these activities 2. one 4. two or three 6. all of them 10. Transfers from the bed to the wheelchair 0. I need total assistance 1. I need partial assistance, supervision, or adaptive devices (e.g., sliding board) 2. I do not need any assistance or adaptive devices 2. I do not use a wheelchair 11. Transfers from the wheelchair to the toilet/tub Transferring also includes transfers from the wheelchair or bed to a toilet wheelchair 0. I need total assistance 1. I need partial assistance, supervision, or adaptive devices (e.g., grab-bars) 2. I do not need any assistance or adaptive devices 2. I do not use a wheelchair 12. Moving around indoors Please check only one, depending on whether or not you usually use a wheelchair or walker to move around indoors. 156 I use a wheelchair. To move around, I… 0. need total assistance 1. need an electric wheelchair or partial assistance to operate a manual wheelchair 2. am independent in a manual wheelchair I walk indoors and I… 3. need supervision while walking (with or without walking aids) 4. walk with a walking frame or crutches, swinging forward with both feet at a time 5. walk with crutches or two canes, setting one foot before the other 6. walk with one cane 7. walk with a leg orthosis(es) only (e.g., leg splint) 8. walk without walking aids 13. Moving around moderate distances (10 to 100 meters) Please check only one, depending on whether or not you usually use a wheelchair or walk to move around moderate distances (10 to 100 meters). I use a wheelchair. To move around, I… 0. need total assistance 1. need an electric wheelchair or partial assistance to operate a manual wheelchair 2. am independent in a manual wheelchair I walk moderate distances and I… 3. need supervision while walking (with or without walking aids) 4. walk with a walking frame or crutches, swinging forward with both feet at a time 5. walk with crutches or two canes, setting one foot before the other 157 6. walk with one cane 7. walk with a leg orthosis(es) only (e.g., leg splint) 8. walk without walking aids 14. Moving around outdoors for more than 100 meters Please check only one, depending on whether or not you usually use a wheelchair or walk to move around outdoors for more than 100 meters. I use a wheelchair. To move around, I… 0. need total assistance 1. need an electric wheelchair or partial assistance to operate a manual wheelchair 2. am independent in a manual wheelchair I walk more than 100 meters and I… 3. need supervision while walking (with or without walking aids) 4. walk with a walking frame or crutches, swinging forward with both feet at a time 5. walk with crutches or two canes, setting one foot before the other 6. walk with one cane 7. walk with a leg orthosis(es) only (e.g., leg splint) 8. walk without walking aids 15. Going up and down stairs Please check only one, depending on whether or not you are able to go up and down stairs 0. I am unable to go up and down stairs, I can go up and down at least 3 steps… 1. but only with assistance or supervision 158 2. but only with devices (e.g., handrail, crutch, or cane) 3. without any assistance, supervision, or devices 16. Transfers from the wheelchair into the car Transfers also include putting the wheelchair into and taking it out of the car. 0. I need total assistance 1. I need partial assistance, supervision, or adaptive devices 2. I do not need any assistance or adaptive devices 2. I do not use a wheelchair 17. Transfers from the floor to the wheelchair 0. I need assistance 1. I do not need any assistance 1. I do not use a wheelchair SCORING (for clinician to complete) Self-care subscale, Items 1-4 (0-20): -------------------------- Respiration and sphincter management subscale, Items 5-8 (0-40): Mobility subscale, Items 9-17 (0-40): -------------------------- -------------------------- TOTAL SCIM SCORE (0-100): -------------------------- Date SCIM Completed: -------------------------- Clinician Name/Signature: --------------------------/ -------------------------- 159 12 -Item Short Form Health Survey This survey asks for your views about your health. This information will help keep track of how you feel and how well you are able to do your usual activities. Answer each question by choosing just one answer. If you are unsure how to answer a question, please give the best answer you can. 1.In general, would you say your health is: □1 Excellent □2 Very good □3 Good □4 Fair □5 Poor The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? a vacuum cleaner, bowling, or playing golf. 3.Climbing several flights of stairs. □1 □2 □3 During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? YES NO 4.Accomplished less than you would like. □1 □2 5.Were limited in the kind of work or other activities. □1 □2 During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? YES, YES, NO, not limited limited limited a lot a little at all 2.Moderate activities such as moving a table, pushing □1 □2 □3 160 YES NO 6.Accomplished less than you would like. □1 □2 7.Did work or activities less carefully than usual. □1 □2 8. During the past 4 weeks, how much did pain interfere with your normal work (including work outside the home and housework)? □1 Not at all □2 A little bit □3 Moderately □4 Quite a bit □5 Extremely These questions are about how you have been feeling during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past 4 weeks… 9. Have you felt calm & peaceful? □1 All of the time □2 Most of the time □3 Some of the time □4 A little of the time □5 None of the time 10. Did you have a lot of energy? □1 All of the time □2 Most of the time □3 Some of the time □4 A little of the time □5 None of the time 11.Have you felt down-hearted & blue? □1 All of the time □2 Most of the time □3 Some of the time □4 A little of the time □5 None of the time 161 12. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives, etc.)? □1 All of the time □2 Most of the time □3 Some of the time □4 A little of the time □5 None of the time Patient ID; Date: PCS: MCS: 162 Appendix E: Good Reporting Of A Mixed Method Study Framework Checklist Guidelines Section: Page Describe the justification for using a mixed-methods approach to the research question Methods- under procedures: pg. 39 Describe the design in terms of the purpose, priority, and sequence of methods Methods- procedures: pg.39 Describe each method in terms of sampling, data collection, and analysis Procedures: pg. 40-42 Analysis: pg. 42-45 Describe where integration has occurred, how it has occurred, and who has participated in it Design: pg. 39 Describe any limitation of one method associated with the presence of the other method Discussion pg. 82-88 Describe any insights gained from mixing or integrating methods Discussion: pg. 82-88 163 Appendix F: Data Collection Procedures Prior to the interviews, participants were emailed detailed information about how to install and use Zoom (a direct link to download zoom was provided). In case of any difficulties during the Zoom meeting (e.g., loss of internet connection) participants were contacted on their phones to continue with the interview. Participants were reminded to be alone in the room during the interview. If the participant was unable to use Zoom because of lack of internet and or difficulty with hand function, the student co-investigators administered the interview orally over the phone. 164 Appendix G: Kolmogorov – Smirnov Test Kolmogorov-Smirnov Statistic df Sig. Life Satisfaction Questionnaire 11 Total Score .103 24 .200 Spinal Cord Independence Measure III Total Score .198 24 .016 12 – Item Short-Form Survey: Physical Component Score .178 24 .048 12 – Item Short-Form Survey: Mental Component Score .145 24 .200 Functional Ambulation Categories .336 24 <.001 165 Appendix H: Relationship Among Sex, Marital Status, and Living Situation Interaction between living situation and sex Interaction between sex and marital status
Thesis/Dissertation
eng
Rehabilitation Sciences
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Mortenson, W. Ben
Understanding the experiences and quality of life of people with incomplete spinal cord injury who can ambulate
Text