SHINING LIGHT ON THE COMPLEXITY OF CARDIAC REHABILITATION UTILIZATION BY PATIENTS WITH HEART DISEASE by NASSIM ADHAMI B.Sc., The University of British Columbia, 2005 B.S.N., The University of British Columbia, 2007 A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Nursing) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) May 2020 © Nassim Adhami 2020 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: Shining Light on the Complexity of Cardiac Rehabilitation Utilization by Patients with Heart Disease submitted by Nassim Adhami in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Nursing Examining Committee: Patricia Rodney, Nursing Supervisor Alison Phinney, Nursing Supervisory Committee Member Fuchsia Howard, Nursing University Examiner Catherine Backman, Occupational Health University Examiner Additional Supervisory Committee Members: Sally Thorne, Nursing Supervisory Committee Member Richard Sawatzky, Nursing Supervisory Committee Member Andrew Ignaszewski, Cardiology Supervisory Committee Member iii Abstract Chronic heart disease is one of the most prevalent forms of chronic disease, and generates significant negative impacts on patients/families, the healthcare system, and the overall Canadian economy. Cardiac rehabilitation (CR) has become recognized as a comprehensive care program for the management of chronic heart disease. However, despite significant evidence of their efficacy, cardiac rehabilitation programs continue to be underutilized in Canada and other parts of the world. Current literature regarding CR underutilization has illuminated its complexity by beginning to point to numerous factors operating at healthcare system, healthcare provider, and patient levels. This research project makes a significant contribution by exploring the experiences of cardiac patients utilizing CR programs, and critically examining how their experiences were shaped by intersections of personal, social and political contexts that overlap at individual, healthcare provider, and healthcare system levels. Guided by the qualitative methodology of interpretive description and the theoretical perspective of intersectionality, data were collected and analyzed from 19 cardiac patient informants through semi-structured one-to-one interviews and participant observations of CR programs. Constant comparative data analysis was employed to inductively analyze themes. The findings showed that cardiac patients’ utilization of a CR program involved an interplay between elements of a prescribed CR program utilization journey and the concomitant personal journey of each individual. The theoretical perspective of intersectionality allowed for the identification of how cardiac patients participating in this study were caught in an interconnected dynamic web of social relationships that acted as influences promoting or interfering with their ability to utilize a CR program. iv Discussion of the findings in this research highlight several implications, including the need for a shift in the delivery of the CR programs from a ‘one-size-fits-all’ approach to a person-centered care approach that values both the personal and prescribed journeys. The findings also pointed to a need to assess, develop, and implement provincial based harmonized systematic referrals that include the entire geography of the province. CR participants’ experiences also pointed to a need for restructuring CR programs to include extended hours/days of operation, childcare onsite, patient input regarding the content of information sessions, and family/caregiver involvement. v Lay Summary Heart disease is a common disease and has many negative impacts on patients and their families/caregivers as well as the healthcare system. Cardiac rehabilitation programs are recommended to help to support patients manage the negative consequences of their heart disease, yet the programs are underused by cardiac patients. This study explored the experiences of cardiac patients using cardiac rehabilitation programs in order to make suggestions for improvements. After interviewing and observing patients in a cardiac rehabilitation program, the researcher showed that there are many challenges that cardiac patients experience and have to overcome in attempting to use a cardiac rehabilitation program. Challenges emerge from individuals’ personal lives, and from the way cardiac rehabilitation programs and cardiac services are structured. To support cardiac patients to be able to more effectively use cardiac rehabilitation programs, the researcher suggested strategies to support patients’ values, needs, and concerns within the structure and delivery of programs. vi Preface This dissertation is an original, unpublished, independent intellectual product of the author, Ms. Nassim Adhami. Ethical approval for this study was received from The University of British Columbia Behavioural Research Ethics Board (Approval Number H16-00339) on August 11th, 2016. Annual review and renewal received on July 12th, 2017 (Approval Number H16-00339). vii Table of Contents Abstract ...................................................................................................................... iii Lay Summary .............................................................................................................. v Preface ....................................................................................................................... vi Table of Contents ...................................................................................................... vii List of Tables ............................................................................................................ xii List of Figures ........................................................................................................... xiii List of Abbreviations ............................................................................................... xiv Acknowledgements ................................................................................................... xv Chapter One: Situating the Study 1.1. Introduction ......................................................................................................... 1 1.2. Developing a Focus for the Study ....................................................................... 8 1.2.1. CR Program Utilization Journey ................................................... 9 18.104.22.168. Figure 1.1: CR Program Utilization Journey ................ 10 1.2.2. Chronic Illness Journey ............................................................... 11 1.2.3. Diverse Influences Impacting the Utilization of CR Program- CR Literature .............................................................................. 14 22.214.171.124. Health Care System Level. ........................................... 14 126.96.36.199. Health Care Provider Level. ......................................... 18 188.8.131.52. Patient Level. ................................................................ 23 1.2.4. CR Program Utilization Journey and Influences at the HCS, HCP, Patient Levels .................................................................... 24 184.108.40.206. Figure 1.2.: CR Program Utilization Journey and HCS, HCP, and Patient Level Influences .................... 25 1.3. Generating a Problem Statement ....................................................................... 25 1.4. Setting Up the Study .......................................................................................... 26 1.4.1. Delineating a Research Question ................................................. 26 1.4.2. Locating a Meta-Theoretical Commitment .................................. 27 220.127.116.11. Intersectionality .............................................................. 27 1.4.3. Sketching the Study Design ......................................................... 28 1.5. Organization of the Dissertation ........................................................................ 29 viii Chapter Two: Surveying the Empirical Terrain 2.1. Cardiac Rehabilitation Programs ...................................................................... 32 2.2. Chronic Illness Experience ............................................................................... 36 2.2.1. Patient Knowledge, Expertise, and Self-Care Ability ................. 36 2.2.2. Illness Trajectory ........................................................................ 39 2.2.3. Social Location of Individuals .................................................... 40 2.3. Health Care System Level ................................................................................ 41 2.3.1. Continuity of Care and Mechanics and Timing of Referral ....... 41 2.3.2. Geographic Location of the CR Program ................................... 44 2.3.3. Patient Capacity of CR Programs ............................................... 45 2.4. Health Care Provider Level .............................................................................. 48 2.4.1. Referral Practices ........................................................................ 48 2.4.2. Physician Recommendations of CR Programs to Cardiac Patients .......................................................................... 49 2.5. Patient Level ..................................................................................................... 50 2.5.1. Sociodemographic Influences ..................................................... 50 2.5.2. Psychological Influences ............................................................ 54 18.104.22.168. Leventhal’s Common Sense Model of Self-Regulation 54 22.214.171.124. CR Literature and the Uptake of Leventhal’s Common Model of Self-Regulation ............................................. 55 2.6. Reflections on the Literature ............................................................................. 56 2.7. Chapter Summary .............................................................................................. 57 Chapter Three: Surveying the Theoretical Terrain 3.1. Introduction ....................................................................................................... 58 3.2. Paradigms and Their Philosophical Assumptions ............................................. 59 3.3. Complexity of CR Program Utilization ............................................................ 63 3.4. Critical Inquiry Paradigm ................................................................................. 64 3.5. Intersectionality ................................................................................................. 66 3.5.1. Core Constructs of Intersectionality ........................................... 69 3.5.2. Core Premises of Intersectionality .............................................. 70 3.6. Application: Intersectionality and Shining Light on the Complexity of CR Program Utilization ............................................................................................ 71 3.7. Chapter Summary .............................................................................................. 75 Chapter Four: Implementing the Study 4.1. Introduction ........................................................................................................ 76 4.2. Understanding Interpretive Description as a Methodology ............................... 77 4.3. Research Methods .............................................................................................. 79 4.3.1. Selecting Sites for Participant Recruitment and Fieldwork ........ 80 4.3.2. Negotiating Entry ........................................................................ 81 4.3.3. Participant Recruitment for Individual Interviews and Participant Observation ............................................................... 84 ix 4.3.4. Setting: The Hospital and CR Program ...................................... 85 4.3.5. Participant Sample ...................................................................... 87 126.96.36.199. Sampling Strategy. ........................................................ 87 188.8.131.52. Sample Size. .................................................................. 88 184.108.40.206. Study Sample Characteristics. ...................................... 90 4.3.6. Constructing the Data: Methods and Processes .......................... 93 220.127.116.11. Semi-Structured Participant Interviews. ....................... 93 18.104.22.168.1. My Role as the Interviewer. ......................... 98 22.214.171.124.2. Challenges of Interviews. ........................... 100 126.96.36.199. Participant Observations ............................................. 101 188.8.131.52.1. Fieldnotes and Journaling .......................... 104 184.108.40.206.2. Challenges of Participant Observation ....... 105 220.127.116.11.3. The Stance of the Observer ........................ 108 18.104.22.168. Participant Demographic Data. ......................................... 109 4.3.7. Managing and Analyzing the Data ........................................... 110 4.4. Enhancing Credibility ..................................................................................... 115 4.4.1. Epistemological Integrity .......................................................... 115 4.4.2. Interpretive Authority ............................................................... 115 4.4.3. Analytic Logic .......................................................................... 116 4.4.4. Representative Credibility ........................................................ 117 4.5. Attending to Research Ethics .......................................................................... 117 4.6. Dissemination of Results to Participants and Agencies .................................. 120 4.7. Chapter Summary ........................................................................................... 121 Chapter Five: Personal Journey 5.1. Introduction: Constructing and Narrating Meanings ...................................... 122 5.2. My Initial Understanding ................................................................................ 123 5.3. Findings: Personal Journal .............................................................................. 125 5.3.1. The Act of Reminiscing: How Did I Get Here? ....................... 125 5.3.2. The Act of Self-Evaluation: What Do I Need to Change? And, Am I Ready to Make the Change? ............................................ 130 22.214.171.124. The Nature of What Needs to Change ........................ 131 126.96.36.199. Perceptions of Readiness to Make the Change: Am I Ready for This? ........................................................... 141 188.8.131.52.1. Making Ends Meet ..................................... 141 184.108.40.206.2. Attending to Family Responsibilities ......... 143 5.4. Chapter Summary ........................................................................................... 146 Chapter Six: The Personal and Prescribed Journeys of Cardiac Rehabilitation—Interplay and Reciprocity 6.1. Introduction ..................................................................................................... 149 6.2. Finding a Way to Get into the Program .......................................................... 149 6.2.1. Moving Between Health Authorities—Obtaining a Referral fo and Enrolling into a Program ................................................ 150 x 6.2.2. Staying Within the Same Health Authority—Obtaining a Referral for and Enrolling into a Program ................................ 156 6.3. Making this Work ........................................................................................... 160 6.3.1. Working to Managing the Symptoms of Cardiac Disease ......... 161 6.3.2. Managing the Complexity of Distance ..................................... 164 6.3.3. Strategizing Regarding the Appropriateness of the Program ... 171 6.4. Chapter Summary ........................................................................................... 179 Chapter Seven: Discussion and Recommendations for Practice, Research, and Policy 7.1. Introduction ..................................................................................................... 181 7.2. Overview of the Study ..................................................................................... 181 7.3. Methodological Reflection .............................................................................. 183 7.4. Substantive Reflections .................................................................................... 185 7.4.1. The Act of Reminiscing and the Act of Self-Evaluation .......... 185 220.127.116.11. CSM of Self-Regulation ............................................. 186 18.104.22.168. CSM of Self-Regulation and the ‘Act of Reminiscing’ and ‘Act of Self-Evaluation’. ....................................... 187 22.214.171.124. The Act of Reminiscing and the Act of Self- Evaluation and the Milestones of the Prescribed CR Program Utilization Journey. ....................................... 191 7.4.2. Finding a Way to Get into a Program ...................................... 195 7.4.3. Making this Work ..................................................................... 200 126.96.36.199. Working to Manage the Symptoms of Cardiac Disease ........................................................... 200 188.8.131.52. Untangling the Complexity of Disease ...................... 202 184.108.40.206. Strategizing the Appropriateness of the Program ...... 206 7.5. Study Strengths and Limitation ...................................................................... 207 7.6. Recommendations for Practice, Research, and Policy .................................... 209 7.6.1. Recommendations for Practice ................................................ 210 220.127.116.11. Providing Individuals with the Opportunity to Make Sense of their Need for a CR Program ........................ 210 18.104.22.168.1. Person-Centered Care as a Healthcare Approach. .................................................... 211 22.214.171.124.2. PCC and its Value within CR Program Delivery. ...................................................... 214 126.96.36.199.3. PCC and its Potential Application within CR Programs. .............................................. 215 7.6.2. Recommendations for Research .............................................. 223 7.6.3. Recommendations for Policy ................................................... 227 7.7. Conclusions ..................................................................................................... 229 References .............................................................................................................. 231 xi Appendices A. Letter of Introduction and Invitation ........................................................... 283 B. Primary Participants: Consent to be Interviewed and/or to be Observed as a Study Participant .................................................................................. 285 C. Demographic Data Sheet ........................................................................................... 292 D. General Data Sheet ...................................................................................... 293 E. Table 1.1.: The Sociodemographic of Participants ..................................... 294 F. Interview Guide for Semi-Structured Interviews with Study Participants . 295 G. Observation Guide ...................................................................................... 296 H. Fieldnotes .................................................................................................... 298 xii List of Tables Table 1.1: The Sociodemographic of participants .................................................. 282 xiii List of Figures Figure 1.1. CR Program Utilization Journey ............................................................. 10 Figure 1.2. CR Program Utilization Journey and HCS, HCP, and Patient Level Influences ............................................................................................... 25 xiv List of Abbreviations CABG Coronary Artery Bypass Graft CACPR Canadian Association of Cardiovascular Prevention and Rehabilitation CR Cardiac Rehabilitation EBP Evidence Based Practice HBM Health Belief Model HCP Health Care Provider HCS Health Care System HD Heart Disease HF Heart Failure ICD Implantable Cardioverter Defibrillators ID Interpretive Description MI Myocardial Infarction PCC Person Centered Care PCI Percutaneous Coronary Intervention PHA Public Health Agency QoL Quality of Life VAD Ventricular Assist Device WHO World Health Organization xv Acknowledgements First, I would like to acknowledge and express my gratitude and respect to the individuals who participated in this study. They cannot be named here for reasons of confidentiality. Your willingness and dedication made this research study rich and possible. Thank you for sharing your stories, your lives, and your knowledge. I would also like to acknowledge the facility staff for welcoming me to their practice area and supporting this study. I would like to thank my primary supervisor, Dr. Patricia Rodney. I am immensely grateful for the invaluable support that you have provided me since the commencement of my doctoral studies. Thank you for your patience and for believing in me. Your intellectual rigor and critical examination of my work pushed my thinking at every step of my PhD journey. It has been a true honour to work with you and to obtain your guidance over the years. Thank you for being the best mentor that I could have ever asked for. I also would like to thank my supervisory committee: Dr. Alison Phinney, Dr. Andrew Ignaszewski, Dr. Richard Sawatzky, and Dr. Sally Thorne. Thank you for intellectually supporting me and pushing me to grow as a scholar. I appreciate the amount of patience, time and scholarly engagement that you have invested in my dissertation work. I also want to express my humble gratitude to the organizations which provided financial support for this research: the Canadian Institute of Health Research, and the University of British Columbia Four Year Doctoral Fellowship. I want to thank my mom, husband (Sina), daughter (Saba), and son (Armon) for helping me make this dissertation possible. Mom, thank you for the many hours and energy you invested in helping me raise my young family while I was buried in books/computer. Sina thank you for believing in me, supporting me, learning to cook and caring for our children. Saba and Armon, xvi thank you for being understanding and letting grandma and dad care for you while I was writing this dissertation. Thank you to everyone, without your support this dissertation would not have happened. 1 Chapter One: Situating the Study 1.1. Introduction Chronic1 heart disease2 is a highly prevalent form of chronic disease and illness3. In 2009, the Public Health Agency (PHA) of Canada stated that 1.6 million adult (20 years of age and older) Canadians have reported having heart disease (HD), as diagnosed by a health professional (PHA, 2009). The prevalence of HD is expected to increase due to the enhancements made in medical technology and pharmaceuticals that result in increases in life expectancies (Beller, 2001; Dalen et al., 2014; Benjamin et al., 2017). Furthermore, the aging of the population will also contribute to an increase in the number of individuals living with a form of HD (Dalen et al., 2014; Denton & Spencer, 2010; Odden, et al., 2011). The most recent data from 2012/2013 reported that 2.4 million adult Canadians have a diagnosis of HD, demonstrating increases in HD prevalence (PHA, 2017). The increase in the prevalence of HD has significant implications, as HD has impacts on the Canadian economy, the Canadian health care system, and on the individuals living with the 1 I use the term ‘chronic’ as it is articulated by Thorne (1993) to refer to “diseases of long duration, in which there may be little change or slow progression” (p. 2). This is in contrast to ‘acute’ disease, “the kind of disease we acquire and, hopefully, resolve fairly quickly” (Thorne, 1993, p.2). I will expand on this point later in the body of this Chapter. 2 Heart disease is any disorder that effects the heart and is an umbrella term for a number of different diseases, including ischemic heart disease and congestive heart failure. 3 ‘Disease’ and ‘illness’ are terms that are both related and different from one another, yet, many health professionals often use these terms interchangeably. I will draw on the works of Radly (2004) to define and highlight the distinction between these two terms. Disease “is something that physicians diagnose and treat” (Radly, 2004, p. 3). In contrast, illness “can be taken to mean the experience of disease, including the feelings relating to changes in bodily states and the consequences of having to bear that ailment; illness, therefore, relates to a way of being for the individual concerned” (Radly, 2004, 2004, p.3) 2 disease and illness, as well as their family members. For example, though advances in surgical procedures, drug therapies, and preventative medicine have resulted in reductions in cardiovascular deaths4, HD continues to be one of the three leading causes of death in Canada for both women and men over 35 years of age (Statistics Canada, 2015)5. In 2012, HD accounted for 20 per cent of all deaths in Canada (Statistics Canada, 2015). Furthermore, in 2010, the estimated cost of HD and stroke6 was 20.9 billion dollars per year in direct and indirect costs (Conference Board of Canada, 2010)7. HD continues to have significant economic burden for Canada (Boisclair et al., 2018). In addition to the mortality and financial implications of HD, HD also may have profound impacts on the individuals living with the illness, including: (1) fair or poor self-ratings of their health status; (2) the need for assistance with their activities of daily living; (3) the development of clinical depression and impaired quality of life (QoL); and (4) an increase in the number of potential years of life lost8 (PHA, 2009; Simmonds et al., 2013). HD also impacts the 4 Statistics have shown a 75 per cent reduction in the number of deaths due to HD since 1952 and a 33 per cent reduction from the year 2000 to 2009 (Statistics Canada, 2015). 5 In 2012 malignant neoplasms were reported to be the leading cause of death in Canada; accounting for 29.8 per cent of all deaths (Statistics Canada, 2015). Furthermore, for those 1 to 32 years of age, accidents and suicide were the two leading causes of deaths (Statistics Canada, 2015). 6 This estimation includes both HD and stroke. After an extensive literature search, I was unable to find estimates of the cost of HD in isolation from other conditions. 7 Direct costs refer to health care expenditures directly relating to the treatment of the disease including: hospital care expenditures and drug expenditures (Conference Board of Canada, 2010). Indirect costs refer to those costs related to lost productivity due to short and long term disability and premature mortality (Conference Board of Canada, 2010). There are other costs, such as impacts on family members, which are not commonly measured. 8 Potential years of life lost refers to “the number of years not lived, owing to premature death before the age of 75” (PHA, 2009, p. 1) 3 families of the individuals living with the illness. Families of cardiac patients often have to be available to provide personal care (for example, helping with activities of daily living) and emotional care (for example, providing comfort and talking to the individual to reduce anxiety and depressive symptoms) for the individual living with HD (Hwang et al., 2011; Kang et al., 2011). Having to provide long-term care for family members who are chronically ill as a result of HD can lead to the experiences of burden by caregivers. Experiences of burden can have negative impacts on the everyday life and relationships of caregivers (Agren et al., 2010; Aldred, 2005; Kang et al., 2011; Luttik, 2007; Mochari-Greenberger & Mosca, 2012), as well as on their physical health, on their financial stability, and on their outlook to the future (Bakas, 2006; Burton et al., 2012; Luttik, 2007; Mochari-Greenberger & Mosca, 2012). Given the prevalence of HD, its burdens of deaths and financial costs, and the negative impacts it has on individuals living with the illness as well as their families, it is clearly important to have appropriate programs in place that will minimize the negative outcomes of HD. Internationally, Cardiac Rehabilitation (CR) has become recognized as a comprehensive care program for individuals living with any form of HD (Cowie et al., 2019; Dalal et al., 2015; Parker et al., 2011; Pio et al., 2020; Taylor et al., 2019). The Canadian Association of Cardiovascular Prevention and Rehabilitation (CACPR) defines CR as: The enhancement and maintenance of cardiovascular health through individualized programs designed to optimize physical, psychological, social, vocational, and emotional status. This process includes the facilitation and delivery of secondary prevention through risk factor identification and modification in an effort to prevent disease progression and recurrence of cardiac events (Stone & Arthur, 2005, p. 2). 4 As indicated in the definition above, CR programs are comprehensive in that they are designed to optimize all aspects of an individual’s health (including, physical, psychological, social, and emotional) that may be impacted by their HD. CR programs are also individualized, in that they allow for adjustments to be made to the core components of the program to specifically target individual patient needs (for example, the cardio-metabolic health and psychosocial well-being of individual patients) (American Association of Cardiovascular & Pulmonary Rehabilitation, 2013; Clark et al., 2010; Taylor, et al., 2010). Currently there are different approaches to the delivery of CR programs including: (1) home-based (Anderson et al., 2017; Dalal et al., 2010; Jolly et al., 2009; Oerkild et al., 2011); (2) center-based or hospital-based (Buckingham et al., 2016; Kraal et al., 2017); and e-health, REMOTE-CR, or virtual-CRP (Brørs et al., 2019; Lear et al., 2018; Maddison et al., 2014; Neubeck et al., 2016). While different CR programs with differing approaches have been developed internationally (for example, within Canada, the United States, Europe, and Australia), all CR programs aim to enhance the functional capacity of patients, to decrease cardiovascular risk factors, to improve patient psychological adaptations to the chronic disease process, and to lay the foundation for long-term behavior and lifestyle changes by patients (Mathes, 2007; Michelsen, 2020). These goals are intended to be achieved through the provision of: (1) exercise and physical activity prescriptions; (2) dietary prescriptions and weight management counseling; (3) pharmacological and psychological support for smoking cessation; (4) education about cardiac disease and illness; and (5) risk factor management through medications and counseling (Clark et al., 2010; Cowie et al., 2019; Kabboul et al., 2018; Mathes, 2007; Taylor et al., 2010). Therefore, nationally and internationally, all CR programs are meant to have these core components integrated into their structures. Furthermore, CR programs of 5 each nation are meant to follow a specific set of guidelines for best practice, which are based on research in the area of CR and clinical outcomes (for example, Canadian Guidelines for Cardiac Rehabilitation and Cardiovascular Disease Prevention, 2009). While these guidelines are more or less similar, each program may differ on the basis of what it is called. For example, within the province of British Columbia, Canada, the different CR programs are named by location and include: (1) Central Okanagan Association for Cardiac Health (located in Kelowna); (2) Healthy Heart (New Westminster); (3) Heart and Lung Health (Prince George); and (4) Healthy Heart Program (Vancouver). Programs may also differ by the physical location of their delivery (for example, while some CR programs are physically located within a hospital setting [for example, Healthy Heart Program located in Vancouver], others are located separate from a hospital [for example, Healthy Heart located in New Westminster]). There is a substantial and growing body of related empirical research indicating that CR results in decreases in: total mortality; cardiac related mortality and morbidity; and one-year re-admission in individuals diagnosed with HD (Anderson et al., 2016; Heran et al., 2011; Ghisi et al., 2019a). Furthermore, CR has been shown to improve the QoL of individuals living with HD and illness (Choo et al., 2018; Hsu et al., 2011; Onishi et al., 2010) and to decrease symptoms of stress, anxiety, and depression (Lavie et al., 2016; Wang et al., 2012; Wise & Patrick, 2012; Yohannes et al., 2010). Due to the positive health impacts of CR, major evidence-based9 9 While I am using the terms “evidence-based” to describe what is currently being said within the CR literature, I do recognize that these terms are not value neutral. As argued by Upshur (2002), “evidence-based medicine [and practice] … [are] linked epistemologically to the theory of foundationalism” (p. 114). Proponents of evidence-based practice (EBP) argue that clinical decisions should be based on ‘clinically relevant research’ based on ‘formal rules of evidence’ (Upshur, 2002, p. 114). As a nurse researcher and a clinical nurse, I agree with Chinn and Kramer in that a range of factors ought to be considered for EBP to be achieved. There ought to be an integration of “best research evidence, health care resources, patient preferences and 6 international guidelines from heart associations recommend that all patients diagnosed with some form of HD (for example, myocardial infarction [MI] and/or heart failure [HF]) and/or who have undergone a cardiovascular surgical procedure (for example, a percutaneous coronary intervention [PCI], and/or heart transplantation), be referred to a CR program (Canadian Cardiovascular Society, 2013; Dalal et al., 2015; Kwan & Balady, 2012). Despite the known health benefits of and recommendations for CR, CR programs are highly underutilized10 and the rates of program enrollment11 and completion12 remain low in Canada and worldwide (Borg et al., 2019; Ghisi et al., 2013c, Kwan & Balady, 2012; Pack et al., 2014; Sumner et al., 2016). Data from the United States, Canada, and the United Kingdom have demonstrated that approximately 70 to 80 per cent of all patients who have HD and who require CR do not utilize the program (Pack et al., 2014; Summer et al., 2016). Furthermore, there are disparities in the utilization of CR programs amongst specific subpopulations of cardiac patients. For example, data shows that cardiac patients who are of female sex (Enid et al., 2017; Samayoa et al., 2015); with lower socioeconomic status (Menezes et al., 2014); who are of older age actions, clinical settings and circumstances, and the clinician’s judgment with regard to clinical decision making” (Chinn & Kramer, 2011, p. 230). 10 I am taking up the phenomenon of underutilization of CR programs in accordance to how the current literature in the fields of Cardiology and Cardiac Rehabilitation are using the noun; a state in which there is a high percentage of cardiac patients who require CR but: (a) are not being referred to the program; (b) are not enrolled into the program; or (b) do not complete the full course of the program. 11 I am defining enrollment as the process by which an eligible cardiac patient has already been referred to the program, and he/she is to attend the first session of the program called ‘an intake’, which involves the CR team getting to know the patient and the patient getting to know the CR facility. 12 I am defining completion as the process by which an eligible cardiac patient completes the full course of a CR program. Due to the fact that different CR programs have different durations, in this definition, I will not be providing exact number of days/weeks/months. 7 (Schopfer & Forman, 2016), non-white (Park et al., 2017), obese, sedentary, and/or smokers (Menezes et al., 2014) have lower utilization rates. The reasons for this phenomenon of the underutilization of CR programs are complex and not clearly delineated. I became cognizant of the complexity during my experiences as a bedside nurse in a General Cardiology and Cardiac Intensive Care Unit; as a clinic nurse in the area of a Heart Function Clinic; and as an On-Call nurse for patients living with a Ventricular Assist Device (VAD). Over the years I had become aware of a number of issues pertaining to the utilization of CR programs. Firstly, I observed an inconsistency in the referral rates of patients13 who were eligible for CR and those who were actually referred. Secondly, amongst patients who were referred to a CR program, there existed a number who either did not enroll into the program, or, who did enroll but did not complete the full course of the program. Lastly, through observing the demographics of and listening to stories told by some of the patients whom I had cared for, I became aware of influences such as age, gender, socioeconomic status, and the proximity of patients’ home residence to a CR program site, which may have impacted their ability to utilize the program. For example, I recall the stress of a woman living in a small rural area who was unable to attend a CR program due to the distance she had to travel to get to the 13 In this chapter, and throughout the rest of my dissertation, I have made the decision to use the term ‘patients’ rather than ‘clients’. This decision is not based on the fact that I do not agree with the term client. Rather, I have chosen to use the former because of the meanings each label has and because of the nature of the patient-healthcare provider relationships that take place within the practice area of CR. The term ‘patient’ carries with it the connotation that in patient-health care provider relationships, health care providers are in a position of power and are expected to make decisions for and direct patient care (Deber et al., 2005). The term ’client’ however, is meant to generate equality between client and health care providers, and “carries an agency relationship whereby one individual purchases professional services from another” (Deber et al., 2005, p. 347). As I will demonstrate within my analysis of empirical data from other studies (Chapters One and Two) and the data from my study, the nature of the relationships between patients and health care providers in CR programs, in the context of the utilization of the program, are not entirely equal. For this reason, I have chosen to use the term patient. 8 closest facility offering the program. In addition to the distance, she had obligations to care for her five school-aged children while her husband worked full-time hours to provide for their family. Another common story that was told to me by many patients was the cost of transportation (e.g., bus, gas, parking) for a single session of CR. I found a number of studies examining the utilization of CR programs by eligible cardiac patients that strongly supported the observations I had made within my clinical practice. Studies have demonstrated that not all physicians will refer all eligible cardiac patients to a CR program and that there are specific influences that are associated with physician referral practices. For example, patients who possess co-morbidities such as diabetes and who have a primary diagnosis of a particular heart condition such as angina (Aragam et al., 2011; Brown et al., 2009) are more often referred to a CR program than other cardiac patients. Another influence that research has shown to be associated with physician referral patterns is the sex of the patient. Women are less likely to be referred to a CR program than their male counterparts (Colbert et al., 2014; Colella, et al., 2014; Enid et al., 2017; Missik, 2001; Samayoa et al., 2015; Stiller & Holt, 2004). Other studies have shown diverse factors that are associated with decreased rates of CR program enrollment and completion by cardiac patients. These include: increased distance to a CR program (Brual et al., 2010; Brual et al., 2012; Johnson et al., 2001; Leung, et al., 2010; Yates et al., 2003); being of female sex (Samayoa et al., 2015); and having increased family obligations and role responsibilities (Supervía et al., 2017). 1.2. Developing a Focus for the Study The literature discussed above is indicating that there are disparities in the utilization of CR programs by eligible cardiac patients. In my own clinical practice, listening to the various stories told to me by the patients I cared for, I became curious about the different influences that 9 impacted an individual’s experience with initiating and completing a CR program. My curiosity was also supported by the concerns reflected in the literature showing an overall underutilization of CR programs, and more notably, disparities in CR program utilization within certain groups of cardiac patients. Therefore, in my dissertation, my goal was to explore how social and contextual influences impact the experiences of cardiac patients in their utilization of CR programs. In the remainder of this first chapter I lay out the empirical and theoretical background that enabled me to move forward with my research plan, and in Chapter Two I further expand on this content. 1.2.1. CR Program Utilization Journey Based on my analysis of the current CR literature that has examined the underutilization of CR programs by cardiac patients (for example, Colbert et al., 2014; Ghisi et al., 2013a and c; Supervía et al., 2017) and my analysis of the CR guidelines for program development (for example, CACPR, American Heart Association, and British Association for Cardiovascular Prevention and Rehabilitation), in this dissertation I proposed that the utilization of CR programs by cardiac patients could be seen as a journey with multiple milestones. The journey commences with the milestone of being referred to a CR program and progresses through the different milestones which include: being notified by the CR program of first intake appointment; going in for a first intake; continuing with weekly CR sessions; completing and graduating from the program; and independently maintaining what has been learned from the program within the community. This journey can be a first experience for some cardiac patients, while it can be a previously walked journey for others. The latter encompasses those individuals who have previously undergone the journey and who, due to a relapse in their cardiac health, and lifestyle challenges, are deemed by himself/herself or a health care provider (HCP) to be in need of 10 another round of CR program. I have portrayed the CR program utilization journey in the following figure. 188.8.131.52 Figure 1.1.: CR Program Utilization Journey As demonstrated from the one-way arrow in the above figure, the CR program utilization journey is structured as a linear process; that is, each milestone has to be met prior to entering the next one. For example, individual cardiac patients have to be referred to a program prior to obtaining an appointment for their first intake, and so forth. Furthermore, while some cardiac patients may complete the entire program and go into maintenance phase,14 others may not even make it into the program because they were never referred or because the referral never made it to the CR program. In my analysis of the current literature that will follow in this chapter, I will 14 The ‘maintenance phase’ is not indicated within the diagram of the CR Program Utilization Journey that I have provided in Figure 1.1. because it is not an actual milestone of the program. Rather, it is an outcome goal of the program, where individuals who complete the entire course of the CR program will continue to maintain a healthy life style through their diet and exercise habits. Referral• Being referred to a CR program.Enrollment• Being notified by the CR program of first intake appointment.• Going in for a first intake.Completion• Continuing with weekly CR sessions.• Completing and graduating from the program. 11 illuminate some of the different influences that are currently seen to be operating at the health care system level, health care provider level, and the patient level. Furthermore, from my review of the current literature I will indicate where within the CR program utilization journey an individual cardiac patient may experience barriers to the utilization of the program. 1.2.2. Chronic Illness Journey A chronic disease such as HD is a ‘social disease’ in which “the social world and a specific disease process interact to create an illness experience for those involved” (Thorne, 1993). As stated by Thorne (1993): …the subjective experience of living with a chronic disease is far more complex than simply bearing pain, feeling fatigued, or living with the physical symptoms that the disease or its treatment might bring on (Conrad, 1990; Gerhardt, 1990). Rather, it is an entity constructed by the many forces at play in the interaction between ourselves and our social worlds (Bury, 1991). Indeed, the chronic illness experience is a highly social phenomenon (p. 6). The experience of a chronic illness can disrupt not only the physical body of an individual, but also their daily life and their sense of identity (Bury, 1982, 1991; Hubbard et al., 2010; Karnilowicz, 2011; Lawton, 2003; Pierret, 2003). Chronic illness can disrupt the structures of an individual’s everyday life and the kinds of knowledge and rules that shape those structures (Bell et al., 2016; Bury, 1982; Houtum et al., 2015). This disruption then calls for “restructuring of self—the perception of who one is, and what one is able to do (Anderson et al., 1991). Reconstructing a sense of self is an ongoing process, shaped by ‘ups and downs’ of the illness course (Anderson, 1991). For example, studies have shown that patients living with congestive heart failure experience periods of deterioration that often leads to a sense of 12 “unreliable, [and] inadequate body” (Östman et al., 2015), resulting in periodic disruption of their everyday lives (Jaarsma et al., 2014; McMurray et al., 2012). Reconstructing a sense of self can involve three lines of work: illness work; everyday life work; and biographical work (Corbin 1998; Corbin & Strauss, 1985, 1987). Illness work involves managing diagnostic processes (e.g., having angiograms and ultrasounds of the heart), prescribed interventions (e.g., pharmaceutical management of HD and utilization of a CR program), and symptoms associated with the disease (e.g., chest pain and shortness of breath). Everyday life work involves tasks such as housekeeping, shopping, and caring for children. Biographical work involves accepting the illness, the types of limitations it brings about and its possibilities including the potential for death, and reconstructing self-identity in the presence of the illness and the changes it has brought about. These elements of illness work emerged as focal points in my research study and they will further be discussed in relation to my findings in Chapters Six and Seven. While the conceptual lens of ‘the work involved in chronic illness’ is helpful by allowing us to understand the everyday activities of the chronically-ill, Conrad (1990) cautions that an emphasis on activities of illness experience runs the risk of “blind[ing] us to other aspects of the experience” (p. 1261). For example, individuals living with chronic illness can experience a ‘loss of self’ (Charmaz, 1983). Chronic illness is perceived as an ‘assault to the self’. Thus, individuals experiencing the illness doubt their self-worth, where the “former self-images [crumble] away without a simultaneous development of equally valued new ones” (Charmaz, 1983, p. 168). Loss of self can result from the restrictions brought about by the physical symptoms of the disease and its associated medical interventions, by social isolation secondary to the inability of individuals to work and/or participate in social activities, by the experience of stigma that may sometimes occur, or from an individual’s own critique of themselves due to an 13 inability to live as before (Charmaz, 1983). For example, studies have illuminated experiences of fear, loss of sense of control, and social isolation as some of the impacts of congestive heart failure on a person’s life (Jeon et al., 2010). More recent work on the illness experience, especially research focusing on the health care sector, has explored how factors such as patient knowledge; expertise and ability to self-care; illness trajectory; and the social location of individuals, contribute to the chronic illness experience and the complexity involved in chronic disease management. This research has pointed to the need to recognize and appreciate the individual patient’s participation in their own care (Boivin et al., 2014; Fowler et al., 2011; Kock et al., 2004; Kralik et al., 2004; Paterson & Sloan, 1994; Paterson et al., 2002; Trier et al., 2015; Udlis, 2011). Furthermore, researchers have also shown that individuals living with chronic illness actually live in what is referred to as “the dual kingdoms of the well and the sick”, where individuals can shift from ‘illness in the foreground and wellness in the background’ to ‘wellness in the foreground and illness in the background’ and vice versa (Paterson, 2001, p. 24). Others have pointed to the complex interplay of social, political, and economic contexts of the chronic illness experience (Anderson et al., 1991; Jowett & Peel, 2009; Whittemore & Dixon, 2008). The chronic illness experience is nested in a complex personal and political nexus (Anderson et al., 1991; Jowett & Peel, 2009) and involves an array of activities and emotional and physical experiences. In this dissertation, I argue that recognizing the experiences of chronically ill individuals with HD (for example, the activities involved to manage a chronic illness), and exploring how those experiences may influence the journeys of cardiac patients through their utilization of CR programs, may be a powerful way to help make visible and ultimately address the complexity involved in the utilization of CR programs. This type of 14 exploration will help health care providers and policy makers to point to and understand some of the influences that are related to the chronic illness experience and which may be operating to prevent the enrollment into or completion of a program by a cardiac patient. I have not been able to find anything in related CR literature that has studied the relationship between the chronic illness experiences, and the complexity of the various processes that impact experiences, of cardiac patients and their experiences with the utilization of CR programs. 1.2.3. Diverse Influences Impacting the Utilization of CR Programs-CR Literature Upon examining current research in the area of CR and the underutilization of the program by eligible cardiac patients, it appears that the lack of CR program uptake is associated with a myriad of interacting influences at the health care system (HCS) level, health care provider (HCP) level, and the patient level. In order to establish an understanding of the gaps in current knowledge, I will highlight some of the influences at each level that have been most commonly cited as being associated with the underutilization of CR programs by cardiac patients. 184.108.40.206. Health Care System Level. At the HCS level, influences such as an increase in the use of day revascularization surgeries, frequent movement of cardiac patients from one service to another, shorter hospital stays, and the lack of continuity between hospital care and the care received within CR programs, have been shown to be associated with the loss of patients within the cardiac care services (Giuliano et al., 2017; Grace et al., 2006; Grace et al., 2012d). Consequently, many cardiac patients who are eligible for CR are not referred to the program. Other influences include the mechanics and the timing of the referral process (Grace et al., 2011a; Pirrucello et al., 2017). In a qualitative study, Grace et al. (2006) found that HCPs believed that issues related to the 15 actual mechanics of the referral process (for example, computer versus paper referrals, or physicians making the referral versus having a specific health care provider designated for the task) impact referral rates. Furthermore, the respondents from that study also believed that the timing of the referral (for example, a mismatch between when a patient is ready to hear information about CR and when the referral is made) had an impact on enrollment rates. Additional key influences at the HCS level involve financial and legislative factors that shape the delivery of CR programs (Grace et al., 2006; Pesah et al., 2017; Turk-Adawai et al., 2015) and the delivery of other cardiac care within the continuum of cardiac care services.15 As with any other practice area within the health care sector, services within the cardiac care programs are highly influenced by the process of globalization. Globalization, a process that has served over the years to create, globally, an economic system dominated by major investors and firms, controls much of the productive assets of the world (Anderson, 2000; Fervers et al., 2015; Gill, 1995; Reading, 2010). Globalization has created pressures on the federal and provincial governments to ‘economize’ health expenditure (Fervers et al., 2015; Reading, 2010; Rodney & Varcoe, 2012). This, in turn, has created a context within the HCS in which key values directly impact the types of services provided. For example, within the cardiac care services, key values of ‘prolongation of life’ and ‘cure’ are dominant (Howlett et al., 2010). These values are especially evident in the increasing number of routine open-heart surgeries and percutaneous coronary interventions that are conducted in North America (Howlett et al., 2010). 15 This includes the continuum of care cardiac patients ought to receive across Cardiac Intensive Care Units/Coronary Care Units/Cardiac Surgery Intensive Care Units, and their associated step-down areas, as well as several outpatient clinics (e.g., Heart Function Clinic, Cardiac Rehabilitation Clinic, Atrial Fibrillation Clinic and others) dedicated to the care of cardiac subpopulations with a specific underlying HD. 16 Another dominant value operating within cardiac care services is ‘technology’. This dominant value is closely related to the former two values, as the pursuit to prolong life and cure disease have resulted in the enhancement of technological innovations (Alter et al., 2006). For example, common practices within cardiac services areas include the use of implantable cardioverter defibrillators (ICDs) and ventricular assist devices (VADs). While these innovations are important in that they have profound positive impacts in saving lives, they also generate ethical concerns. For example, they may expose individuals and their families to the burden of prolonged pain (both physical and psychological) (Dodson et al., 2013). The values of prolongation of life, cure, and technology exert power by shaping the goals and priorities of care. Thus, today, given the fiscal strains of the Canadian HCS, most health care dollars are invested into acute care rather than preventative medicine (Ghisi et al., 2013b). Consequently, the development and implementation of preventative and supportive CR programs within different provinces of Canada is limited. In 2014 Grace and her colleagues reported the absence of CR programs in the Northwest Territories, Yukon, or Nunavult and the presence of only 1 program in Newfoundland and Labrador. Furthermore, the scholars reported an inadequacy in funding for CR in most provinces and almost scarce in some others. The limited number of CR programs can result in longer than recommended wait times (Grace et al., 2014). The most recent Canadian estimate on actual wait times is from a study also conducted by Grace and her colleagues (2015). The researchers reported a mean wait time of 68 ± 64 (standard deviation) days between patient referral and patient admission to a CR program. The current wait times are long and have implications on the utilization of CR programs. A study conducted by Russell et al. (2011) demonstrated that for every 1-day increased increment in wait time, eligible cardiac patients were 1 per cent less likely to enroll into CR programs. The 17 researchers postulated that some of the reasons for decreased enrollments with increased wait times include patients returning to work and/or the perception of less need for CR services by patients. The brief analysis that I have provided above demonstrates that at the HCS level many of the influences that are associated with decreased utilization of CR programs are related to decreased referral rates, which may be driven by practicalities such as limited continuity within the different practice areas of cardiac care services and also the mechanics of referrals. The other key influence that I have highlighted includes issues related to wait times, which in turn are driven by fiscal strains of the HCS. Many of the studies that have looked at HCS influences and CR program utilization have relied heavily on the use of statistical data analysis, using retrospective patient health records. These studies are important in that they have pointed to key influences that impact the ability of cardiac patients to utilize CR programs. For example, the quantitative studies discussed in this section have pointed to referral strategies and wait times as influences that impact the utilization of CR programs. These studies are also important in that they provide descriptive statistical estimates of CR referral and enrollment rates and wait times. All of this knowledge shines some light on areas of CR utilization that require further exploration. While the preliminary identification of these influences is important, another matter that is also important to explore is how these influences operating at the HCS level impact a patient’s experience with utilizing a CR program. Empirical evidence shows that, clinically, some patients may significantly decompensate within the first few days to weeks after being discharged from an acute cardiac care unit (Chioncel et al., 2018). Evidence also shows that HD, whether newly diagnosed or chronic, can cause anxiety and depression, especially in the beginning phases of the 18 illness process (Bradt et al., 2013; Kovacs et al., 2009). Moreover, “diagnosis of a chronic disease or the onset of new disease-related symptoms forces a person to attend to the illness” resulting in the illness being in the foreground of the world of the individual (Paterson, 2001, p. 23). With the illness in the foreground, there is a “focus on the sickness, suffering, loss, and burden associated with living with a chronic illness” (Paterson, 2001, p. 23). Research in the areas of chronic illness and patient experience has also shown that during the beginning stages of a diagnosis, relevant information about the diagnosis is a crucial element needed by patients in order for them to cope (Gallagher et al., 2011; Harrison et al., 2011; Thorne, 1993). This raises serious questions about the impact of a delayed access, or lack of access, to programs such as CR. Thus, it is important to explore how influences at the HCS level, such as wait times for CR programs, impact the experiences of cardiac patients with their chronic illness journey. Furthermore, it is also important to explore how such wait times, and other related challenges influence the experiences of patients with utilizing CR programs. Currently knowledge about how influences at the HCS level shape the experiences of cardiac patients with utilizing a CR program is limited. Such knowledge is required to help HCPs and policy makers to better understand some of the influences that are operating at the HCS level which prevent enrollment into CR programs by cardiac patients. 220.127.116.11. Health Care Provider Level. A commonly cited influence related to health care providers (HCPs) that has been shown to be associated with decreased CR program utilization includes low referral rates of eligible patients by cardiologists, general practitioners, and internists16 (Aragam et al., 2011; Aragam et 16 In this section I have focused only on patterns of referrals by physicians because the majority of the related research focuses on physicians. This is not to say that other allied health care 19 al., 2015; Chan et al. 2010; Grace et al., 2012c; Turk-Adawi et al., 2014). For example, the work by Grace and her team has demonstrated that only 32 per cent of cardiologists refer their eligible patients to a CR program (Grace et al., 2012c). Similarly, an American study has shown the referral rates of eligible patients to CR programs to be approximately 18 per cent (Chan et al., 2010). There are three key variables that are commonly cited within the literature that have been associated with low referral rates. These are: patient characteristics; physician perceptions of the efficacy of CR programs; and relationships between physicians within the different practice areas. There is a substantial amount of research demonstrating that there are multiple patient characteristics associated with whether a physician will refer an eligible patient to a CR program. Such patient characteristics include older age (65 years of age and older), the patient being of female sex, and the patient lacking proficiency in the English language (Aragam et al., 2011; Brady et al., 2013). Patients possessing any or all of these factors are less likely to be referred to a CR program than those who are younger, male and proficient in English (Aragam et al., 2013; Brady et al., 2013). For example, an American study looking at referral rates and predictors of referral to a CR program found that patients referred were significantly younger (Bittner et al., 1998). This study also found that age was inversely associated with referral, with a decline of 3 per cent in referral rates with each year of increasing age. Similar correlations between age and referral rates have been demonstrated by other studies (e.g., Ades, et al., 1992; Brown et al., 2009; Cortés & Arthur, 2006; Leon et al., 2005). While the studies located here are dated, they providers (for example, nurses and nurse practitioners) are not involved in the referral process, or that they do not also obtain low referral rates. 20 are important. They point to disparities in referrals obtained by individuals with specific sociodemographic characteristics. More recent work investigating the impact of referrals on CR program utilization has focused on the efficacy of different referral mechanics (for example, automatic referrals) within inpatient facilities for increasing program enrollment by cardiac patients (Grace et al., 2011a; Grace et al., 2012b). Outcomes measured by these studies include total referral of cardiac patients. The impact of patient sociodemographic on referral practices of HCPs, however, continues to be an important element of the complexity of CR program utilization. Cardiac patients can also obtain referrals to a CR program from their community HCPs (for example, general practitioners and general cardiologists). There is a paucity of recent data, particularly from primary studies, that has looked at HCP referral practices for individuals of diverse sociodemographic backgrounds. As I will discuss in Chapter Seven, such influences became focal points within my study. Researchers have also pointed to sex differences in CR program referral rates, finding that significantly more men than women were referred; 67.2 per cent and 57.8 per cent, respectively (Gravely et al., 2014). Similar results were found by a study conducted by Li and colleagues (2018), where female participants were found to be 12 % less likely to obtain a referral for a program than their male counterparts. As might be expected, these sex disparities were only evident when traditional methods of referral (e.g., referral by a physician or a liaison) were used (Gravely et al., 2014). When systematic referral strategies (e.g., automatic referral strategies) were used, there were no significant sex differences (Gravely et al., 2014). Gravely and his team have postulated that one reason for this inconsistency in referral patterns could be physician ‘biases’ about the ‘low physical conditions’ of older adults and female cardiac patients 21 and how they are not optimal candidates for exercise training involved in CR. Menezes et al. (2014) have also postulated physicians’ lack of appreciation for cardiovascular risks in women, finding women are likely to be assigned to a lower-risk category, which is one reason for the disparity in referral rates for the female sex (Menezes et al., 2014). Adding to the complexity of these possible biases is when the patient demographics ‘older age’ and ‘female sex’ interact. After conducting an extensive literature review, I was unable to locate studies that have looked at the changes in the percentage of women referred to CR programs as they age. However, studies have reported that older men are referred to CR at higher rates than older women (Cortes & Arthur, 2006). Other patient characteristics that are shown to be associated with low physician referral rates include: (1) being nonwhite (Castellanos et al., 2019; King et al., 2001; Li et al., 2018); and (2) having a low socioeconomic status (Graversen et al., 2019; Johnson et al., 2004). A study conducted by Gregory, LaVeist, and Simpson (2006) found that ‘white’ patients are referred twice as frequently as ‘black’17 patients (11.5 per cent and 4.7 per cent, respectively). Furthermore, women of African American descent are even less likely to be referred to CR programs compared to their white female counterparts (12 per cent and 24 per cent, respectively) (Allen et al., 2004). Therefore, there seems to be another layer of complexity—the interaction between sex and race—in determining physician referral. Another influence that is associated with low physician referral rates is labeled in the research as the perceptions of physicians regarding the efficacy of CR. Physicians not perceiving CR as a necessary intervention (Ghisi et al., 2013c) and lacking awareness of the benefits of CR 17 Note that the researchers defined ‘whites’ as individuals of European descent and ‘blacks’ as individuals of African, non-Hispanic descent (Gregory et al., 2006). 22 have been shown to be characteristics associated with low referral rates (Duncan et al., 2016; Gallagher et al., 2016; Grace et al., 2006; Moradi et al., 2011). The relationships between the different HCPs involved in the care of cardiac patients is another influence that has been shown to be associated with the underutilization of CR. Grace et al. (2006) found that a lack of “solid, trusting relationship with open lines of communication” between providers of CR programs and cardiologists results in decreased referral rates by the cardiologists (p. 157). Furthermore, decreased referral rates have also been shown to be correlated with the sense of “territoriality” about patients by general cardiologists, where general cardiologists are skeptical about the outcomes of CR and also do not want to lose their patients to cardiologists within CR programs (Grace et al., 2006). As can be seen from the review provided above, at the HCP level the key influence that is commonly cited as being associated with decreased CR program utilization is decreased referral practices. The review above also demonstrates that referral practices may be driven by specific patient characteristics, physician beliefs regarding the efficacy of CR, and the relationships between the HCPs of different services. What is significant and clear in the available research looking at HCP influences, is that physician referral practices have created a structure of systemic inequalities for subpopulations of cardiac patients, including those who are women; older adults; and of a minority ethnic status. The available research does not explore, from the perspectives of cardiac patients, how their social characteristics such as age, gender, race, and class impact referral practices of HCPs. The available research also does not explore cardiac patients’ chronic illness experiences with their HD, or their experiences with utilizing CR programs. 23 18.104.22.168. Patient level. Studies have demonstrated that even once a physician or an automatic system has made a referral, rates of CR program enrollment and completion by patients remain low (Ades et al., 2017; Barber et al., 2001; Grace et al., 2002a; Liu et al., 2019; Pack et al., 2012). There are influences that are operating at the individual patient level that are preventing many cardiac patients from participating in CR programs. Much of the research around patient level influences that are associated with the underutilization of CR programs has focused on sociodemographic influences and psychological influences. The sociodemographic influences that are operating at the patient level are the same as those that I discussed at the HCP level, and include age, sex, and socioeconomic status. Diverse studies bring into focus the insights that patients who are not employed, who have a lower socioeconomic status and family income, and who have lower education levels are less likely to enroll into and complete CR programs (Endo et al., 2015; Farley et al., 2003; Grace et al., 2002; Heydarpour et al., 2015; Lane et al., 2001; Taylor et al., 2015). Other negative influences include distance and transportation barriers, long wait times, severe weather conditions, patient preferences to not manage their health within a group setting, patient perceptions that they are already exercising at home/within community (Borg et al., 2019; Farley et al., 2003; Ghisi et al., 2013b; Grace et al., 2006; Leung et al., 2010; Shanmugasegaram et al., 2013), and inconvenient program hours for patients who have to work during the day (Back et al., 2017; Farley et al., 2003; Grace et al., 2006). In setting up this research I found that the available research looking at patient level influences points to the same sociodemographic variables as the studies that looked at HCP influences. This is significant, in that the majority of the studies have made apparent that 24 influences at all levels (HCS, HPC, and patient), lead to disparities in CR program utilization. Such disparities are especially pronounced for individuals who are women, older adult, of ethnic minority status, and/or from a low socioeconomic status. While current CR literature has not examined the interrelatedness of the influences across all levels, it does raise questions about how structures and influences at the HCS level may be impacting patients at the individual level. 1.2.4. CR Program Utilization Journey and Influences at the HCS, HCP, and Patient Levels The literature review that I have provided thus far has pointed to many influences at HCS, HCP, and patient levels that impact the different milestones in the CR program utilization journey. Based on the literature review I created the following figure to provide a summary of the particular milestones and levels at which each influence may surface and impact a cardiac patient’s ability to utilize a CR program. 25 22.214.171.124. Figure 1.2.: CR Program Utilization Journey and HCS, HCP, and Patient Level Influences 1.3. Generating a Problem Statement Throughout this chapter I have shown that while the CR literature has illuminated many influences that are impacting the utilization of CR programs by cardiac patients, there continue to be gaps in our knowledge of the complexity of CR program utilization. Firstly, studies looking Referral•HCS Level•Shorter hospital stays.•Lack of continuity between different services.•Mechanics of referral.•Characteristics of cardiac rehabilitation programs.•HCP Level•Physician referral patterns-sociodemographics of the patient:female sex, older age, nonwhite minorities, low socioeconomic status, low education levels, and increased distance from CR facilities.•Speciality of the referring practitioner. Enrollment: being notified by the CR program of their first intake appointment, and going in for a first intake.•HCS Level•Timing of referral.•Capacity->Wait -times.•HCP Level•Physician recommendation.•Physician reaction to the severity of patient condition (as perceived by the patient).•Patient Level•Sociodemographics:female sex, older age, nonwhite minorities, non-employment status, not-inarelationship, low socioeconomic status, low education levels, and increased distance from CR facilities. •Geographic location of the CR program (rurality and distance).Completion •Patient Level•Sociodemographics: female sex, older age, nonwhite minorities, non-employment status, not in a relationship, low socioeconomic status, low education levels, and increased distance from CR facilities. •Geographic location of the CR program (rurality and distance). 26 at the experiences of cardiac patients with the utilization of CR programs are limited. The majority of the studies have retrospectively used electronic health data to investigate the relationships between the different influences and CR referral, enrollment, and completion rates. Studies that have looked at patient experiences have explored the influences in isolation from the other influences (for example, looking at perceptions of cardiac patients regarding wait times alone). The studies have not considered the intersections of the different influences within each level (for example, how low socioeconomic status intersects with old age and the female gender, in shaping experiences of patients with the utilization of CR programs) and their intersections across different levels (for example, how an individual’s social location shaped by their sex, gender, socioeconomic status, intersects with the potential biases HCPs hold of them based on the individual’s social location). The lack of studies regarding the intersections of the various influences across all levels (HCS, HCP, and patient levels) is the second limitation of available studies. I argue that to be able to fully understand the complexity involved in the utilization of CR programs, all influences need to be studied separately and in relation to one another. Lastly, the various studies have not explored how the chronic illness experiences of patients living with HD may impact their experiences with utilizing CR programs. 1.4. Setting Up the Study 1.4.1 Delineating a Research Question Upon reflecting on the conclusions above, I articulated the overarching research question for this study as: How do the intersections of: (1) social and economic contexts of the health care delivery; (2) social and personal contexts of patients’ individual lives; and (3) patients’ navigation through their chronic illness journey, shape the experiences of patients with heart disease with respect to utilizing CR programs? 27 1.4.2. Locating a Meta-Theoretical Commitment As I have demonstrated in the research review and analyses provided in this chapter, the phenomenon of CR utilization is complex, multidimensional, and appears to be impacted by influences at the HCS, HCP, and patient levels. Secondly, the influences at each level appear to be interacting with one another and their presence and interrelatedness may or may not be visible to cardiac patients whose experiences are impacted by them, or to the HCPs overseeing their care. Thirdly, the influences are embedded in broader economic, political, and social contexts, and include social relations such as age, gender, and race that may be intersecting with one another. Lastly, it appears that these influences not only may impact the ability of cardiac patients to utilize CR programs (for example, their ability to come in for their first intake and the successive CR sessions that follow), but may also be impacting their ability to even have the choice of utilizing the program (for example, patients who are eligible but are not referred to a CR program). Having considered the diverse socio-political influences that shape the complexity involved in CR program utilization, and given my research question, I located the meta-theoretical context for this study within the critical inquiry paradigm. More specifically, this study was informed by the theoretical perspective of intersectionality. 126.96.36.199. Intersectionality. Situated within the broader landscape of critical inquiry, intersectionality has been taken up as both a theoretical and methodological approach to inquiry (Hankivsky, 2014). Intersectionality as a critical lens allows for the examination of the interactions between different social locations (e.g., race/ethnicity, age, gender, class). Intersectionality therefore provided an analytical lens that allowed me to critically examine how different forms of social locations, and their interplay, impacted the experiences of cardiac patients who participated in this study with 28 their utilization of a CR program. Intersectionality allowed me to explore the experiences of cardiac patients with utilizing a CR program, as described from their own social, economic, and geographical contexts. It illuminated a variety of perspectives – young/old, single mother, married/divorced/widowed, rural/urban and ‘Caucasian’/’non-Caucasian—to be heard. Furthermore, it allowed for a critical exploration of the intersections and relations between the social locations of individuals and the social and economic infrastructures of the CR programs and the HCS within which the programs operated. 1.4.3. Sketching the Study Design The nature of my research question and my critical lens meant that I needed to understand the subjective experiences of cardiac patients as they were located within their world—a world that was shaped by their individual social and personal contexts, individual chronic illness journey with HD, and the social and economic context of health care delivery. This led me to a qualitative research methodology, as I was interested in studying human experiences occurring “in their natural settings” (Denzin & Lincoln, 2011, p. 3). Qualitative methodology allowed me to locate cardiac patients in their world and it offered me the opportunity to “turn the world” of cardiac patients participating in this study into a series of representations, including fieldnotes and interviews excerpts (Denzin & Lincoln, 2011, p. 3). More specifically, I chose to use interpretive description as my particular qualitative study methodology. Thorne (2016) defines interpretive description as: A methodological development within the applied qualitative health research field … an approach to knowledge generation that straddles the chasm between objective neutrality and abject theorizing, extending a form of understanding that is of practical 29 importance to the applied disciplines within the context of their distinctive social mandates (p. 26). Appreciating that cardiac patients may not be aware of all the influences that may be impacting their experiences with utilizing a CR program, interpretive description allowed me to apply various data collection methods, and the theoretical perspective of intersectionality, to critically examine patterns among and between study participants, such that I was able to generate a better understanding of the complexity inherent in the experiences of patients when they were utilizing CR programs. This type of knowledge produced through the use of various methods (e.g., interviews and participant observations) guided by the methodology of interpretive description is one that has practice, research, and policy implications which I discuss in detail in Chapter Seven of this dissertation. 1.5. Organization of the Dissertation In this chapter I provided a brief and broad overview of literature examining and pointing to the phenomenon of CR program underutilization, which is a significant problem within the clinical practice area of CR. Having provided a context and background, I then introduced the research study. In Chapter Two I will provide a comprehensive literature review, which elaborates on the nature of CR programs and their importance, and provides a more thorough examination of current empirical data examining the phenomenon of CR program underutilization. Together with Chapter One, Chapter Two provides empirically-based direction for this study, supporting its aim, methodology, and theoretical perspective. In Chapter Three, I elaborate on the meta-paradigm of critical inquiry and the related theoretical perspective of intersectionality. In Chapter Four I provide a detailed overview of the methodology interpretive description, and the various methods that were implemented in this study. Chapter Five and Six 30 consist of a presentation of the study analyses and findings, and Chapter Seven concludes the dissertation by providing a broad reflection of the substantive findings of this study in the context of empirical data produced by other studies. Chapter Seven closes with methodological reflections, study limitations and strengths, and recommendations for future practice, research, and policy. 31 Chapter Two Surveying Related Empirical Terrain Having provided an overview of the complexity involved in the utilization of CR programs, I would like to now turn more fully to examine relevant empirical work. This chapter will provide further empirical support for the research question that I have articulated in Chapter One. Empirical work on what CR programs are and how they are structured is important in this thesis and this chapter will therefore commence with an overview of this content. My overall purpose for the empirical review in this chapter is to summarize the current state of knowledge about the influences that impact the utilization of CR programs and to illuminate gaps in this knowledge. This will include a review of research on chronic illness journeys and on the influences that operate at the HCS, HCP, and patient levels. The key search terms that were utilized in the conduct of my literature search included: “cardiac rehabilitation”, “cardiac rehabilitation programs”, “cardiac rehabilitation delivery models”, “hospital-based programs”, “home-based programs”, “e-health”, “virtual health”, “utilization”, “underutilization”, “uptake”, “access”, “enrollment”, “completion”, “weekly sessions”, “patient outcomes”, “patient preferences”, “chronic illness”, “chronic illness journey”, “chronic illness trajectory”, and “chronic illness experience”. The databases searched included Google Scholar, MedLINE, and CINAHL. The search was limited to the following categories of empirical data: 1) comprehensive literature reviews and scholarly research articles published in peer reviewed journals; (2) English publications with available full text; (3) systematic reviews, meta-analysis, meta-synthesis, mixed methods and quantitative and qualitative research studies; and (4) studies conducted after the year 1990. Initially the titles and abstracts of the retrieved studies were reviewed for relevance to my study’s purpose and research question. Selected 32 studies were then critically evaluated with the purpose of determining the gaps in existing knowledge regarding the complexity of CR program underutilization. Study designs such as sampling strategies, sample sizes, and methods of data collection and data analysis were also appraised to evaluate appropriateness to answer the research questions of the studies. Within this process, methodological and conceptual limitations of each study was also identified. Furthermore, this process allowed for me to evaluate the existing knowledge and to identify the gaps in the literature, thus, informing the design of my study. 2.1. Cardiac Rehabilitation Programs It is well established that CR is a comprehensive care program for individuals living with any form of HD (Cowie et al., 2019; Dalal et al., 2015; Parker et al., 2011; Stone et al., 2009; Taylor et al. 2019). The Canadian Association of Cardiovascular Prevention and Rehabilitation (CACPR) defines CR as: The enhancement and maintenance of cardiovascular health through individualized programs designed to optimize physical, psychological, social, vocational, and emotional status. This process includes the facilitation and delivery of secondary prevention through risk factor identification and modification in an effort to prevent disease progression and recurrence of cardiac events (Stone & Arthur, 2005, p.2). The above definition is consistent with the definition that the World Health Organization (WHO) provides regarding the general rehabilitation of cardiac patients. The WHO (1993), however, further adds to this definition by also highlighting the importance of aiding individuals to ‘preserve or resume’ their function within their society. The WHO defines CR of cardiac patients as: 33 The sum of activities required to influence favorably the underlying cause of the disease, as well as the best possible physical, mental, and social conditions, so that they [cardiac patients] may by their own efforts, preserve or resume when lost, as normal a place as possible in the society. Rehabilitation cannot be regarded as an isolated form of therapy but must be integrated within the entire treatment. As I explained in Chapter One, CR programs are meant to be comprehensive in that they are designed to optimize all aspects of an individual’s health (for example, physical, psychological, social, and emotional) that may be impacted by HD. CR programs are also individualized, in that they allow for adjustments to be made to the core components of the program to specifically target individual patient needs (for example, the cardio-metabolic and psychosocial state of individual patients) (Clark et al., 2010; Taylor et al., 2010). Within Canada, CR programs involve a multidisciplinary team and core elements. The core elements of CR programs include: 34 (1) patient referral processes; (2) patient assessment (risk stratification, exercise stress testing, and risk factor assessment); (3) health behaviour interventions and cardiovascular disease risk factor modification; (4) nutritional counseling; (5) risk factor counseling and management (management of lipids, hypertension, diabetes, and weight, smoking cessation, psychosocial management, physical activity counseling, and exercise training); (6) patient education programs (health behaviour adherence strategies and medication adherence strategies); (7) outcomes assessment programs (health outcomes, educational outcomes, behavioural outcomes, and service outcomes); (8) continuous quality improvement programs; and (9) continuous professional development programs (Stone & Arthur, 2005; Thomas et al., 2010). While different CR programs with differing approaches have been developed internationally (for example, within Canada, the United States, Europe, and Australia), all CR programs have similar core components. Research indicates that CR results in decreases in: total mortality; cardiac related mortality and morbidity; and one-year hospital re-admission in individuals diagnosed with HD (Brawner et al., 2016; Campbell et al., 2012; Heran et al., 2011; Lee et al., 2019; Reges et al., 2013; Taylor et al., 2015). Furthermore, CR has been shown to improve the QoL of individuals living with HD (Aude et al., 2006; Francis et al., 2019; Hsu et al., 2011; Jankowska et al., 2008; Khalife-Zadeh, et al., 2015; Onishi et al., 2010; Shepherd & While, 2012) through decreasing symptoms of stress, anxiety, and depression (Giannuzzi et al., 2008; Kocer et al., 2011; Wang et 35 al., 2012a,b; Wise & Patrick, 2012; Zheng, et al., 2019). These positive health outcomes are obtained through exercise training, education on heart healthy living, and counseling to reduce stress. Due to the positive health impacts of CR, major evidence-based guidelines from heart associations internationally (e.g., the Canadian Association of Cardiovascular Prevention and Rehabilitation and Cardiovascular Disease Prevention; American Heart Association; and British Association for Cardiovascular Prevention and Rehabilitation) recommend that all patients diagnosed with some form of HD and/or who have undergone a cardiovascular surgical procedure (for example, a percutaneous coronary intervention [PCI], post-valvular surgery, heart transplantation or an insertion of a ventricular assist device [VAD]), be referred to and offered the program (Conway, 2015; Kwan & Balady, 2012; Stone et al., 2009). Despite the recommendations for CR, programs have been reported to be underutilized, with rates of program utilization ranging from 20 per cent to 30 per cent (Conway, 2015; Ghisi et al., 2013b; Kwan & Balady, 2012). In Chapter One, I provided a description of how I am operationalizing the phenomenon of CR program utilization based on my review of the literature regarding the structures of CR programs and on the available data on ‘factors’ (for example, age and HCP referral practices) impacting program utilization. I proposed that the utilization of CR programs by cardiac patients could be seen as a journey with multiple milestones. The journey commences with the milestone of being referred by a HCP or an ‘automatic system’ and progresses through the different milestones which include: being notified by the CR program of their first intake appointment; going in for a first intake; continuing with weekly CR sessions; completing and graduation from the program; and independently maintaining what has been learned in the program within the community. I further argued that current data have pointed to 36 different influences that are operating at the HCS, HCP, and patient levels which impact the CR program utilization journey of each individual cardiac patient.18 In this chapter I will further explore these influences. I will commence with a discussion of the chronic illness experience because, as I argued in Chapter One, the chronic illness experience and how each individual cardiac patient navigates through their individual illness journey shapes their experiences with utilizing CR programs. 2.2. Chronic Illness Experience The 1980s marked a turning point in research conducted within the area of chronic disease, moving from almost complete outsiders’ perspectives to an inclusion of insiders’ perspectives on what it means to live with a chronic illness (Thorne & Paterson, 1998). This in turn has increased our grasp of the complexity involved in the management of chronic illness. Drawing on the findings of such studies, I will illuminate how factors such as: (1) patient knowledge, expertise and self-care ability; (2) illness trajectory; and (3) the social location of individuals contribute to the chronic illness experience and the complexity involved in chronic disease management such as the utilization of a CR program to manage HD. 2.2.1. Patient Knowledge, Expertise, and Self-Care Ability Over the years there has been a conceptual shift in the notion of HCP-patient relationships from “the professional as the expert” (Thorne et al., 2000, p. 303), to an emphasis on the expertise and role of the individual patient in managing their own chronic illness (Davidson et al., 2014; Kinney et al., 2015; Magnezi et al., 2016; Thorne et al., 2000). Patient’s development of knowledge of and expertise in their illness, and the dependence of their quality 18 In Chapter One I provided a diagram that illustrates the milestones and the different influences (refer to Figure 1.2.). 37 of life on their ability to self-care and make their own decisions have become areas of emphasis for the management of many chronic diseases, including HD (Bennett et al., 2010; Bosworth et al., 2010; Ciccone et al., 2010; Davidson et al., 2014; Magnezi et al., 2016). The management of chronic disease by the individual patient is seen as ‘illness career’, where the individual acquires the skills to respond to changes in their health status and the psychosocial and physiological aspects of the disease, and to engage in relationships with HCPs (Price, 1996). The constructs ‘self-care’, ‘self-management’, and ‘decision making’ (Freeland et al., 2015; Gallagher et al., 2011; Hwang et al., 2014; Koch et al., 2004; Kralik et al., 2004; Magnezi et al., 2016; Paterson & Sloan, 1994; Paterson et al., 2001; Sigurðardóttir, 2005; Thorne et al., 2003) are increasingly surfacing within the healthcare literature and represent a shift in perspectives toward recognizing and appreciating individual patients’ participation in their own care. This conceptual shift does not belittle the importance of the roles and knowledge of the HCP; rather, it asserts that patients ought to be acknowledged as full partners in the health care decision making process (Thorne et al., 2000). Further, this conceptual shift calls for HCPs “to look for informed and expert patients as a vital source of knowledge about how to achieve optimal individual results across a diversity of patient contexts and conditions” (Thorne, 2008, p. 13). A landmark study conducted by Thorne and her team, however, demonstrates that the value of patient as the expert is not upheld by HCPs within the clinical setting (Thorne et al., 2000). In their study, participants described the general form of their health care interactions as “a pervasive attitude of disbelief in their competence to make decisions on their own behalf” (p. 305). The participants reflected this pattern on seven values/assumptions held by the HCPs. These values/assumptions include: (1) retention of the role of expert; (2) control of information to which the patient had access; (3) assumptions about biomedical superiority; (4) privileging 38 disease information over quality of life; (5) psychological labeling of patient behavior; (6) assumptions about the meaning of ‘non-compliance’; and (7) punitive gatekeeping over social and financial services. Similar results were found by Halpert and Godena (2011), where patient-HCP relationships were focal to patient experiences. Some of the emerging themes from Halpert and Godena’s study included: (1) the need for more empathy from HCPs about the impact of illness on individuals’ lives; (2) the lack of help by HCPs; (3) lack of trust in HCPs; and (4) patient perceptions of HCP disbelief regarding patients’ challenges and knowledge. Thorne and her team bring our attention to a number of important influences that contribute to the complexities involved in the care of chronic illness. Specifically, they have illuminated how health care attitudes are manifested in our logic, science, and practice and call for professionals to “deconstruct and reframe some of [their] usual rationalizations about why professionals behave in the way that they do in chronic illness care … [and] to reexamine interactional patterns in health care relationships from a critical perspective” (Thorne et al., 2000, p. 308). Furthermore, they assert that we ought to make visible the social context that creates a barrier for individuals living with chronic illness to negotiate the care they perceive as needed. This involves acknowledging and eliminating inappropriate attitudes and extending and applying our experiential knowledge obtained from studies that tap into insider perspectives. Nonetheless, Thorne and Paterson (1998) caution against idealizing the individual with a chronic illness as strong, powerful, and competent, such that their continued need for HCP expertise and support is underestimated or neglected. Other studies have demonstrated further influences that are involved in the management of chronic illnesses including, the illness trajectory. 39 2.2.2. Illness Trajectory Concurrent with a shift in the conceptualization of the knowledge and expertise of the individual with chronic illness, there has also been a shift in the themes of the lived experiences of individuals with chronic illness; a shift from concepts such as ‘suffering’, ‘loss’, and ‘sick role’, to more optimistic perspectives such as ‘being courageous’, ‘maintaining hope’, and ‘reframing’ (Thorne & Paterson, 1998, p. 175). The Shifting Perspective Model developed by Paterson and her colleagues (2001), however, demonstrates that individuals living with chronic illness actually live in what is referred to as “the dual kingdoms of the well and the sick” (p. 23), where individuals can shift from ‘illness in the foreground and wellness in the background’ to ‘wellness in the foreground and illness in the background’ and vice versa. The shift between the two states is influenced by factors such as threats to control (for example, disease progression and life incidents and situations) and the recognition that the individual has shifted from one state to the other. While individuals living with a chronic illness spend a lot of time in the space between being ‘acutely-ill’ and ‘being well’, they invest in trying to decrease the intrusiveness of the disease (Koch et al., 2004), to be ‘normal’ within the abnormality of the disease (Karnilowicz, 2011; Öhman et al., 2003), and to obtain harmony with themselves (Berg et al, 2013; Delmar et al., 2005; Hubbard et al., 2010). This process involves the development of expertise in the management of the chronic disease, which includes: understanding what works, developing body-awareness (Bell et al., 2016; Hernandez et al., 1999; Houtum et al., 2015; Paterson & Thorne, 2000), and finding a level of comfort with the discomfort that the disease may inflict on the body (Berg et al., 2013; Morse et al., 1994; Corbin, 2003; Öhman et al., 2003). Having to develop expertise in self-care and disease management is only part of the complexity involved in 40 the chronic illness experience. Other influences that can add to the complexity of the chronic illness experience include the social location of individuals. 2.2.3. Social Location of Individuals. The illness experience is also constructed within a complex interplay of social, political, and economic contexts (Anderson et al., 1991; Conrad & Barker, 2010; Jowett & Peel; 2009; Jowsey et al., 2012; Kralik et al., 2004). For example, the ways in which individuals experience health challenges is strongly influenced by gender (Anderson et al., 1991; Jowsey et al., 2012; Kattari & Hasche, 2015; Thorne et al., 1997). There is a growing body of research showing that women, as well as having to live with a chronic illness, have to also take responsibility for the caretaking role of their family and of family members who are chronically-ill (Anderson, 2000; Eakin et al., 2002; Jowsey et al., 2012; Wang et al., 2012b). This is partially due to the process of globalization, which has led to the restructuring of healthcare services where many health resources (for example, home care) have been decreased or eliminated (Anderson, 2000; Hankivsky et al., 2004). Discourses of ‘home is best’ or ‘health care close to home’ (Anderson, 2000), and a common focus on early discharge of patients have led to the responsibilities of the care of the ill to be on the shoulders of women (Anderson, 2000; Hankivsky et al, 2004; Jowsey et al., 2012). Other influences that can impact an individual’s chronic illness experience include those that impact the ability of individuals to navigate the system and access health services such as CR programs. These can include: geographic locations of home residence, age, and socioeconomic status. For example, studies have demonstrated that individuals who live in rural communities often have to make trade-offs between their healthcare needs and out-of-pocket costs (for example, gas and lost work productivity) and their safety (for example, having to drive 41 through hazardous conditions) (Wong & Regan, 2009). In addition to recognizing how each of these factors influence access and can potentially cause health disparities, HCPs also need to acknowledge that each of these influences can intersect with one another in creating the social positions of individuals (Anderson et al., 2003; Collins, 2015; Hankivsky et al., 2014; Smith et al., 2008). As I have indicated in Chapter One, there are various influences that shape the chronic illness experience of individuals living with HD. These include patient knowledge, expertise, and ability to self-care, the illness trajectory of each individual patient, and the social location of the individual with chronic illness. The CR literature up to this point has not explicitly studied the relationship between the chronic illness experiences of cardiac patients and their experiences with the utilization of CR programs. An exploration of how the chronic illness experiences of cardiac patients may influence the journeys of cardiac patients through their utilization of CR programs, may be a powerful way to help make visible some of the complexity involved in the underutilization of CR programs by cardiac patients. 2.3. Health Care System Level 2.3.1. Continuity of Care and Mechanics and Timing of Referral At the HCS level, influences such as an increase in the use of day revascularization surgeries, frequent movement of cardiac patients from one service to another, shorter hospital stays, and the lack of continuity between hospital care and the care received within CR programs have been shown to be associated with the loss of patients within cardiac care services (Giuliano et al., 2017; Grace et al., 2006; Grace et al., 2012a). Consequently, many cardiac patients who are eligible for CR are not referred to the program. Obtaining continuity of care can involve both the discharge of the patient from the hospital and the processes of referral to a CR program. This 42 in turn involves factors such as the mechanics and the timing of the referral process (Grace et al., 2011a; Gravely et al., 2014; Pirrucello et al., 2017). Referral strategies, or mechanics, have varied over time and continue to be different depending on the specific program. Grace et al. (2011) systematically reviewed available literature to synthesize evidence and make recommendations on strategies to increase enrollment of cardiac patients into a CR program. The authors found that CR enrollment rates varied significantly by referral strategies: (1) usual referral patterns (where a physician initiates a conversation with the patient regarding CR referral and carries out the appropriate steps for making a referral) resulted in enrollments of 6% to 32%; (2) systematic referral strategies (the use of standing referral orders to a CR program via manual or electronic means) led to enrollment rates of 19% to 54%; (3) liaison strategies (HCPs or peer mentors have bedside conversations with patients regarding the benefits of CR and potential barriers to participation) resulted in enrollment rates of 35% to 56%; (4) a combination of these methods led to enrollment rates of 53% to 78%; and (5) a systematic or liaison strategy combined with a patient CR letter intervention (motivational letters) led to 58% to 86% enrollment rates. To enhance CR enrollment and participation, the authors have suggested the adoption and implementation of a combination of systematic and liaison referral strategies by all cardiac inpatient units in Canada. The researchers have argued that this approach is most effective because it will allow for “near universal patient referral” (p. 195). To date, both systematic referral strategies or systematic referral strategies in combination with liaison strategies are cited as the best practice for obtaining universal referrals of cardiac patients (Ades et al., 2017; Colella et al., 2014; Gravely et al., 2014). After an extensive literature review, I was unable to locate any recent studies 43 (nationally or internationally) that have studied and reported on changes in current referral practices. The approximate timing of a referral has also been shown to be associated with enrollment rates. Studies that have investigated the relationship between timing of referral and patient enrollments date back to late 90’s and early 2000’s (e.g., Grace et al., 2006; Mitoff, 2005; Schuster et al., 1999), when investigations of factors impacting CR program utilization were in their early stages. These studies are nonetheless significant, as they point to important elements of referrals that have implications for patient enrollments. A study conducted by Grace and her team (2006) found that physicians perceived the presence of a mismatch between when a patient is ready to hear information about CR and when the referral is actually made, as one cause of lower enrollment rates. Mitoff and his team (2005) found similar results. The participants in their study were cardiac patients and the participants reported that there were times when they were not ready to hear about CR (for example, when family members were visiting, or when they were freshly out of surgery) and that if the information were conveyed to them during those times, they would have likely not remembered. Such challenges consequently led to lower rates of enrollment by the patients. Further, a study done by Shuster and colleagues (1999) demonstrated that patients who had received sedatives for a procedure (for example, CABG or a PCI) were less likely to remember whether information such as follow-ups had been provided to them. These findings are particularly significant because they point to times at which patients are most receptive to health information, including obtaining patient teaching on CR programs and referrals. Therefore, within the context of systematic referral strategies as well as a liaison, appropriate timing of patient teaching regarding CR programs continues to be important. More recent original studies are needed to explore the relationship between times of patient teaching 44 about CR programs and patient enrollments into programs in the context of newer referral strategies. Also related to the notion of the ‘time of referral’ is the issue of obtaining further information post hospital discharge. Participants in Mitoff’s study (2005) felt that their ability to obtain further information about CR programs after being discharged from the hospital was a challenge. Those who had more follow-up appointments with their cardiologists were better able to obtain needed information and were more likely to enroll into the program. A more recent study by Grace and colleagues (2012a) supports the importance of early access to information about CR programs by patients and its impact on CR program utilization. In their study, early outpatient education (EARLY ED) provided at the CR program shortly after hospital discharge resulted in significantly greater enrollment. Another study has found a positive correlation between early dates for first appointment at a CR program and actual enrollment rates within the first intake session (Pack et al., 2014). While I have categorized the issues related to ‘timing’ as influences that are operating at the HCS level, such issues can also be perceived as influences that are related to HCPs and patients, as they are closely related to HCP-patient communication. 2.3.2. Geographic Location of the CR Program The geographic location of the CR program has been shown to be correlated with the enrollment and completion of CR programs by cardiac patients. Study findings regarding geographic location, however, are variable. While some studies show a negative relationship between the rurality of the program and utilization rates (Angelis et al., 2008; Bradly, et al., 2013; King et al., 1999, 2001; Leung et al., 2010; Menezes et al., 2014; Shanmugasegaram et al., 2013; Smith et al., 2008; Sundararajan et al., 2004), others have shown a positive relationship between rurality of the program and utilization rates (Suaya et al., 2007) or no relationship 45 (Harrison & Wardle, 2005). Similarity, studies investigating the relationship between the distance from a patient’s home residence to a CR program have also shown mixed findings: negative relationship (Ades et al., 1992; Brual et al., 2010; Chamosa et al., 2015; De Angelis et al., 2008; Grace et al., 2007; Higgins et al., 2008; Leung et al., 2010; Suaya et al., 2007; Yates et al., 2003) or no relationship (Dunlay et al., 2009; Melville et al., 1999; Missik, 2001). 2.3.3. Patient Capacity of CR Programs Another influence that operates at the HCS level is the issue of capacity of CR programs. The availability of physical space and CR program personnel within CR programs sets the limits of enrollment rates. In Chapter One, I provided an analysis of how factors related to financial and legislative issues of cardiac care services across Canadian provinces influence the number of CR programs available. This in turn impacts the capacity of CR programs to provide CR to patients across various geographic locations. Limited capacity results in longer than recommended wait times. In 2006, the Canadian Cardiovascular Society Access to Care Working Group established a wait time benchmark for CR programs. The wait time benchmark established by the Access to Care Working Group was 1 to 30 calendar days (Dafoe et al., 2006; Grace et al., 2012c). This wait time was similar to that published by the Canadian Medical Association Wait Time Alliance in 2010. The wait time benchmark is meant to take into consideration the ‘clinical heterogeneity’ of cardiac patients, including the need for quick access to CR programs to prevent deterioration in medical or psychological state and/or to prevent the loss of employment status (Dafoe et al., 2006). Conversely, some patients may require more time between the onset of a cardiac event and/or the receipt of a cardiac procedure and the time they first access CR programs (Dafoe et al., 2006). More recently, there have been shifts in recommendations for wait times, from 60 days being 46 acceptable (Dafoe et al., 2006; Grace et al., 2012c; Suskin & Grace, 2015) to recommendations for patients to access CR programs as early as possible (Suskin & Grace, 2015). The most recent comprehensive literature review on current wait times was conducted by Suskin and Grace (2015). The researchers have reported current wait times of 8.5-127.0 days (approximately 1 week to 4 months). Based on studies that reported positive outcomes for CR utilization, Suskin and Grace have reported 17 days to be the optimal wait time to balance the benefits with risks. The most recent Canadian study that has explored the perceptions of patients and HCPs of CR program wait times was conducted by Grace and her colleagues (2012c). The aim of their study was to: (1) describe cardiac patient perceptions of actual and ideal CR wait times and whether they considered their wait acceptable; (2) describe and compare the perceptions of cardiac specialists and CR program HCPs regarding the proportion of patients receiving CR within Canadian Cardiovascular Society recommended wait-times, as well as whether the recommendations are appropriate and feasible; and (3) describe program-reported CR wait times, describe program awareness of wait time benchmarks, and investigate factors that CR programs perceived to affect wait times (p. 2). The researchers conducted self-report surveys across all stakeholders who participated. The nationally reported mean number of days from the time of discharge to the start of CR was approximately 60 days, with a median of 42 days. Furthermore, 33 per cent of the patients reported starting CR within the 30 days and 64.6 per cent reported starting the program within the 60 days. While these numbers showed improvements compared to a previous study conducted in Canada that looked at estimates of wait times (mean of 99 days and median of 70 days) (Dafoe et al., 2006), the more recent times continue to be too long and to have negative implications for CR programs enrollments and on the health of cardiac patients. 47 A study conducted by Russell and his team found that for every 1-day increment in wait time, eligible cardiac patients were 1 per cent less likely to enroll into a CR program (Russell et al., 2011). The postulated reasons for decreased enrollments with increased wait times included patients returning to work and/or the perception of less need for CR services by patients (Russell et al., 2011; Suskin & Grace, 2015). Adverse clinical events experienced by cardiac patients during their time of wait also contribute to decreased enrolment rates (Candido et al., 2011; Alter et al., 2012) and were a further cause of increased wait times (Suskin & Grace, 2015). In summary, as can be seen from the analyses provided above, studies indicate that at the HCS level there are a number of influences operating which impact both referral and enrolment rates. Many of the studies that have investigated the relationship between these influences and the utilization of CR programs have drawn on retrospective data for their analysis. There is a dearth of studies that have looked at the impacts of influences operating at the HCS level on patient experiences with utilizing CR programs. In particular, there is a gap in existing knowledge about how, from the perspectives of patients, influences such as the mechanics and timing of the referral, current wait times, and the lack of continuity of care, impact the experiences of cardiac patients in terms of their utilization of CR programs. Incorporating the perspectives of patients into evaluating influences at the HCS is key to delivering accessible, appropriate, and effective healthcare. Individuals living with HD have firsthand knowledge of the ways in which influences at the HCS level meet their individual needs and the various aspects of the system may facilitate or prevent their ability to utilize a CR program. Yet, there is limited research that has focused specifically on the experiences of cardiac patients. 48 2.4. Health Care Provider Level 2.4.1. Referral practices Research examining HCP influences has pointed to significant inconsistencies in physician referral practices. Studies have reported an overall low physician (cardiologists, general practitioners, and internists) referral rates; ranging from as low as 10 per cent to as high as 30 per cent (Aragam et al., 2011; Aragam et al., 2013; Aragam et al., 2015; Barber et al., 2004; Bittner et al., 1998; Chan et al., 2010; Grace et al., 2002; Grace et al., 2012d; King et al., 1999; Roblin et al., 2004; Scott et al, 2003; Spencer et al., 2001; Turk-Adawi et al., 2014). There are further referral disparities in the demographic patient groups of women, older adults, nonwhite minorities, low socioeconomic status, low education levels, and increased distance of home residence to CR facilities (Ades et al., 1992; Aragam et al., 2011; Bittner et al., 1992; Brady et al., 2013; Brown et al., 2009; Castellanos et al., 2019; Graverson et al., 2019; Gregory et al., 2006; Gurewich et al., 2008; Li et al., 2018). For example, relative to women, men are more likely to be referred to a CR program by a physician (Bittner et al., 1998; Grace et al., 2002; Gravely et al., 2014; Halm et al., 1999; Menezes et al., 2014; Missik, 2001; Stiller & Holt, 2004). Further adding to the complexity of referral patterns is when the patient demographics ‘older age’ and ‘female sex’ interact; where older women receive the lowest referral rates (Cortes & Arthur, 2006). As I explained in Chapter One, many of the studies that I have located that point to the relationships between referral practices and patient sociodemographic are dated. This is a reflection of the shift in the focus of more recent studies investigating the efficacy of different referral strategies (e.g., automatic referrals) on CR program utilization. However, the impact of patient sociodemographic on HCP referral practices continues to be a significant element of CR program utilization, as cardiac patients can also 49 obtain referrals for CR programs from their community HCPs (e.g., general practitioners and general cardiologists) where automatic referral systems are not currently implemented. 2.4.2. Physician Recommendations of CR Programs to Cardiac Patients. Another influence operating at the HCP level is physician recommendations of CR programs to cardiac patients. This influence has been reported to impact enrolment rates. Using a scale that was developed by Ades and colleagues (1992)19 to measure physician recommendation for CR programs (as perceived by patients), Shanks and colleagues (2007) found that physician recommendations were significantly correlated with CR enrollment. The researchers found that the strength of physician recommendations explained 23.3 per cent of the variance between the individuals who enrolled into a CR program and those who did not. Ades and his team (1992) found similar results. In their study, patients who perceived physician recommendations of CR to be ‘not mentioned to moderately supportive’ obtained a 1.8 per cent in enrollment rates, compared to 66 per cent in those who perceived a ‘strong physician recommendation’. Conversely, a qualitative study conducted by Mitoff and his team showed variability in the impact of physician recommendations on enrollment rates (Mitoff et al., 2005). While a subset of patients had already decided to join a CR program and were not influenced by physician recommendations, other patients weighted physician recommendations quite heavily in their decision to enroll. A systematic review by Ghisi and colleagues (2013) also illuminated the significance of physician endorsement of CR programs on patient enrollment rates. Related to physician recommendations are the perceptions of patients of their physician’s reaction to the severity of their HD. The study conducted by Mitoff and his team showed that 19 The scale developed by Ades, Waldmann, Polk, and Coflesky (1992) is a visual analog scale that ranges from 1(the physician did not recommend participation) to 5 (the physician strongly recommended participation). 50 cardiac patients who believed that they did not require CR felt that their physician had minimized the impacts of their HD and that the interventions received during the hospital (for example, coronary artery bypass graft) put their heart “in very good shape”, and therefore they would not benefit from a CR program (Mitoff et al., 2005, p. 143). 2.5. Patient Level Research indicates that once a referral has been made by a physician or via an automatic referral system, rates of CR program enrollment and completion by patients continue to remain low; that is, less than 50 per cent (Ades et al., 2017; Balady et al., 2011; Barber et al., 2001; Cossette et al., 2012; Grace et al., 2012a; Johnson et al., 2004; King et al., 1999; Orenstein et al., 2004; Roblin et al., 2004; Russell et al., 2011; Samayoa et al., 2014; Turk-Adawi et al., 2014). Many of the studies investigating reasons for low enrollment and completion rates have focused on influences that are related to individual cardiac patients. I have been unable to locate any studies that have concurrently considered the influences that are operating at the HCS and HCP levels, and how those may intersect with one another and with influences at the patient level in shaping the experiences of cardiac patients with the utilization of CR programs. The influences reported within the current literature can be grouped as those that are related to the sociodemographic of the individual or to individual psychological influences. 2.5.1. Sociodemographic Influences In Chapter One, I argued that the sociodemographic influences operating at the patient level are similar to those that are operating at the HCP level. However, the ways sociodemographic influences operate at the HCP level are related to the patterns of the referral practices of the practitioners. Conversely, at the patient level, the sociodemographic influences are specifically related to the individual patients and whether they decide to enroll into and 51 complete a CR program. The commonly cited sociodemographic influences include age, sex, race, socioeconomic status, education level, employment status, and relationship status with a partner or living with another individual (Ades et al, 1992; Al-Ali & Haddad, 2004; Endo et al., 2015; Farley et al., 2003; Grace et al., 2002; Harlan et al., 1995; Heydarpour et al., 2015; Husak et al., 2004; Jackson et al., 2005; Taylor et al, 2011; Taylor et al., 2015). These studies have shown that individuals of older age (65 years and older), of female gender, of minority status, with low socioeconomic status or low family income, with low education levels, with an unemployment status, and/or who are not in a relationship or who live alone, enroll and complete CR programs at lower rates. In the studies noted above, the different influences (e.g., age, gender, and ethnicity) are operationalized as discrete variables (e.g., a patient is a female or a male). For example, to investigate factors that are associated with patient enrollment and adherence rates to an outpatient cardiac rehabilitation program, Endo and colleagues (2015) compared patients who utilized a CR program to those who did not based on demographic and clinical data. Participants within their study were grouped into three categories: “enrollers” (patients who participated at least once in a CR program), “nonenrollers” (individuals who did not participate in even one session of the CR program), and “adherers” (participants who participated in at least one additional session post enrolling into the program. The researchers drew on electronic medical charts and cardiac catheterization database to derive data for their analysis. They collected demographic data such as age, sex, employment status, and family structure. The different participant groups were then compared using univariate and multivariate statistical analyses. As I have argued in Chapter One, and will further elaborate on in Chapter Three, variables such as age, gender, and ethnicity are social constructions that are shaped by the 52 broader historical, economic, and social contexts. Some of the empirical data that I have drawn on in my earlier discussion of chronic illness experiences in Chapter One and in this chapter have illuminated how these constructs are shaped by larger contexts. I therefore argue that by studying these sociodemographic influences as ‘discrete variables’, they are stripped from their broader context in much of the research done to date, which provides a limited understanding of the complexity involved in the experiences of cardiac patients attempting to enroll into and complete a CR program. With evidence that low socioeconomic status is correlated with low CR program enrollment and completion rates by cardiac patients, and with some indication that reasons for this correlation may be issues of access secondary to cost of transportation (Taylor et al., 2011), Lemstra and his team studied the effect of opening a new CR program within close proximity to a low-income neighbourhood in Saskatoon, Canada (Lemstra et al., 2013). Lemstra et al.’s study was unique in that it was the first study that examined the postulation that the relationship between low income and low attendance rates is due to lack of physically access. The researchers defined a low income neighbourhood as one where more than 30% of its household occupants meet the criteria for low income. A low income family was operationalized as a family income where more than 70% of the total family income was spent on necessities such as food, shelter and clothing. Their findings supported that of other studies; that is, individuals living within low-income neighbourhood enroll into and complete CR programs at much lower rates (only 8.4 per cent utilization rate) than individuals who live in high-income neighbourhood. Furthermore, the study also showed that even with increases in physical access through the development of a new program, enrollment and completion rates within the low-income community continue to be low. This finding contradicted what previous scholars had postulated regarding reasons for why 53 individuals with low socioeconomic status may not be attending CR programs in that issues with physical distance and transportation may be the cause. Lemstra et al.’s study, I argue, is an exemplar of the ongoing need to critically examine all influences, and their intersections with one another. The researchers did not further explore reasons for nonattendance by individuals who lived in the lower income neighbourhood. Perhaps the participants in Lemstra’s study were not entirely influenced by geographic barriers, but also by their material context (for example, the need to work long hours to financially support their family). A more recent study by Bachmann and colleagues (2017) demonstrated similar results where individuals from lower income neighbourhood attended CR programs at much lower rates (340 participants out of 4096 [8%] attended CR programs). Although the researchers did not directly study barriers, they pointed to challenges such as participants needing to work longer hours as reasons for low rates of program uptake. The need to study intersections of the different influences and to critically examine the impacts of the different sociodemographic influences beyond discrete variables is further evident in the research looking at female sex and enrollment and completion patterns. As I have indicated earlier, studies investigating barriers to CR program enrollment and completion faced by female cardiac patients have pointed to influences such as older age, non-white ethno-cultural background, lower socioeconomic status, unmarried status, poor spousal support, costs, and difficulties with transportation as barriers to CR utilization (Grace et al., 2008; Grace et al., 2010; Jolly et al., 2004; Lieberman et al., 1998; Marcuccio et al., 2003; McCarthy et al., 2011; Rolfe et al., 2010; Sanderson et al., 2010; Scott et al., 2003; Supervía et al., 2017). These findings point to the intersections of the different social locations of women in shaping their experiences with accessing health care resources such as CR programs. Yet after an 54 extensive literature review, I was unable to locate studies that have also explored social location barriers experienced by men. 2.5.2. Psychological influences. Many of the studies that have focused on psychological influences impacting enrolment and completion rates by cardiac patients have drawn on Leventhal’s Common Sense Model (CSM) of Self-Regulation and the Health Belief Model. 188.8.131.52. Leventhal’s CSM of Self-Regulation. Howard Leventhal commenced his research in the late 1960s and early 1970s focusing on how messages of fear in acute circumstances might lead individuals to take up health-promoting actions such as smoking cessation and having chest X-rays (Leventhal & Niles, 1964). His early work was grounded in the assumption that “information alone is insufficient to change attitudes or to influence behavior. Some form of motivation or arousal seems to be necessary for change to occur” (p. 459). Using different methods of producing different levels of fear regarding smoking and lung cancer, he and his colleague found that fear arousal increases persuasion; that is, there is a positive correlation between reported fear and intentions to act in response to the fear.20 Leventhal and his colleagues then extended their model by investigating what adaptation and coping efforts are needed for individuals experiencing chronic illness. The stages that guide adaptive actions commence with the development of a representation of the illness. This process involves seven components: (1) illness identity (the name of the health threat and its symptoms); (2) time-line (the perceived time frame of the disease progression and/or recovery); (3) cause 20 Leventhal and Niles’ 1964 paper provides an elaboration on their study. 55 (individual’s perceptions of what they think caused the illness); (4) consequence (the imagined or real impact the illness will have on an individual’s life); (5) curability or controllability (the degree to which an individual believes that their illness can be controlled or cured by themselves or others); (6) coherence (patient’s perceptions of their understanding of their illness); and (7) emotional representation (the extent to which the illness effects the patient emotionally). Based on these perceptions, patients may or may not plan and engage in health-related interventions. 184.108.40.206. CR Literature and the Uptake of Leventhal’s CSM of Self-Regulation. Within the pool of research examining the phenomenon of CR program underutilization, a questionnaire called the Illness Perception Questionnaire21 (IPQ) has been utilized to determine whether the different components of illness perceptions, identity, cause, time-line, consequence, and curability/controllability, are associated with attendance at CR programs (Blair et al., 2014; Cooper et al., 1999; Grace et al., 2005; Jones et al., 2018). The studies have pointed to a correlation between stronger belief that the illness (related to myocardial infarction) could be cured or controlled and higher attendance rates at CR programs. No significant differences have been found between non-attenders and attenders for identity, timeline, or consequences subscales of IPQ. The CSM of Self-Regulation has also been incorporated into interventions (for example, CR invitation letters using motivation messages) aimed at increasing CR uptake by patients (Mosleh et al., 2013). 21 The BIPQ is a nine-item questionnaire which assess patients’ illness beliefs. Items 1 through 8 of the questionnaire each assess one dimension of illness perception using a 0—10 response scale. Item 9 of the BIPQ asks respondents, in ranked order, to state the three most important factors that they believe may have caused their illness. The overall score of items 1 through 8 gives a score range of 0—80. A higher score indicates increasingly negative perceptions with respect to illness being treatable, and greater levels of concern and general effect of illness on life. For further details on the questionnaire see Broadbent, Petrie, Main, & Weinman (2006). 56 2.6. Reflections on the Literature In summary, while the CR literature has illuminated many influences that are impacting the utilization of CR programs by cardiac patients across the different milestones of the CR program utilization journey, there continues to be gaps within our current understanding of the complexity inherent in CR program utilization. Firstly, studies looking at the experiences of cardiac patients with the utilization of CR programs are limited. The majority of the available studies have retrospectively used electronic health data to investigate the relationships between the different influences and CR referral, enrollment, and completion rates. Studies that have looked at patient experiences have explored the influences in isolation from the other influences (for example, looking at perceptions of cardiac patients of wait times alone). The studies have not considered the intersections of different influences within each level (for example, how low socioeconomic status intersects with old age and the female gender in shaping experiences of patients with the utilization of CR programs) and their intersections across different levels of socio-political impact (for example, how an individual’s social location—which is shaped by their sex, gender, socioeconomic status—intersects with the potential biases HCPs hold regarding individuals based on their social location). The paucity of data regarding intersections of the various influences across all levels (HCS, HCP, and patient levels) is the second limitation of the available studies. It is my premise in this research that to fully understand the complexity involved in the utilization of CR programs, all influences need to be studied across all levels of socio-political impact. The third limitation of the current literature is the ways that different sociodemographic influences are operationalized. In the research studies I have cited above, such influences are primarily studied as discrete variables in isolation from their historical, political, economic, and 57 social contexts. Such approaches limit our understandings of the complexity involved in CR program utilization. Further, the various studies have not explored how the chronic illness experiences of patients living with HD may impact their experiences with the utilization of CR programs. Given the limitations of our current state of knowledge regarding the phenomenon of CR program underutilization, I have proposed the following research question: How do the intersections of the: (1) social and economic contexts of the health care delivery; (2) social and personal contexts of patients’ individual lives; and (3) patients’ navigation through their chronic illness journey, shape the experiences of patients with heart disease with respect to utilizing CR programs? 2.7. Chapter Summary In this chapter I drew on the CR literature to provide an overview of the current state of knowledge regarding influences that impact CR program utilization by cardiac patients. In so doing I illuminated gaps in our knowledge regarding the complexity of CR program underutilization. In the next chapter, I will present the theoretical framework that I will use to address my research question. 58 Chapter Three: Surveying the Theoretical Terrain 3.1. Introduction In Chapters One and Two, I presented an overview of the current knowledge looking at the utilization of CR programs by patients living with HD. Based on the gaps in the available literature, the aim of this study was to explore the subjective experiences of cardiac patients with utilizing a CR program. In this chapter, I will locate the meta-theoretical context that informed the ontology, epistemology, methodology, and methods of this study. I will begin this discussion by providing a brief overview of key elements of the phenomenon of CR program utilization. As I indicated in Chapters One and Two, the phenomenon of CR utilization is complex, multidimensional, and appears to be impacted by influences at the HCS, HCP, and patient levels. Secondly, the influences at each level may be interacting with one another and their presence and interrelatedness may or may not be visible to the eyes of cardiac patients whose experiences are impacted by them. Thirdly, the influences may be embedded in broader economic, political, and social contexts, and include social factors such as age, gender, and race that may be intersecting with one another. Having considered the influences that shape the complexity involved in CR program utilization, and given my research question, I have located the meta-theoretical context for this study within the critical inquiry paradigm. More specifically, this study was guided by the theoretical perspective intersectionality. My discussion in this chapter will begin by providing a broad and brief overview of research paradigms and their philosophical assumptions. This overview develops a common platform for the discussion that will follow exploring how intersectionality informed the philosophical underpinnings of this study. 59 3.2. Paradigms and their Philosophical Assumptions Scholars within the social sciences have called for researchers to be transparent about the location of their study within a ‘paradigm’; the “set of basic beliefs … that defines, for its holder, the nature of the ‘world’, the individual’s place in it, and the range of possible relationships to that world and its parts” (Guba & Lincoln, 1994, p. 107). Paradigms are therefore a platform from which an inquiry commences, shaping how researchers define what an inquiry is and how it ought to be practiced (Guba, 1990). There are four subjects of philosophy that are related to the concept paradigm: (1) epistemology (“the study of what human beings know, how they come to know what they think they know and what the criteria are for evaluating knowledge claims” [Schultz, 1988, p. 217]22); (2) ontology ( “concerned with … the structure of reality” [Crotty, 1998, p. 10], that is, how the researcher views reality [Guba, 2010]); (3) axiology (the values and ethics grounded in the research inquiry [Lincoln, Lynham, & Guba 2011]); and (4) methodology (the research design that guides choices of particular methods [Crotty, 1998]). For the purposes of this chapter, my discussion will focus on epistemology, ontology, and axiology. Methodology, although very closely linked to the other three, will be discussed in detail in Chapter Four. A specific paradigm is grounded in a set of assumptions that in turn propose reasons for why inquiry is conducted and knowledge is sought, how knowledge is viewed and produced by researchers, what researchers perceive as significant products of the inquiry, and ultimately what is perceived as good evidence for practice (Lincoln, Lynham, & Guba 2011). Paradigms, and 22 I am taking up knowing and knowledge as defined by Chinn and Kramer (2011): knowing as “ways of perceiving and understanding the self and the world” and knowledge as “knowing that is expressed in a form that can be shared or communicated with others” (p. 3). 60 how they are defined and categorized, are human constructions and are subject to change.23 I will draw on the works of Guba, Lynham, and Lincoln (2011) to provide a brief overview of the different paradigms and their philosophical underpinnings. I have chosen to draw on their work because the authors provide clear linkages between the different paradigms and their ontological, epistemological, and axiological underpinnings. This overview will provide a common platform for the interpretation and analysis of the discussion that will follow. Lincoln, Lynham, and Guba (2011) have identified five paradigms: (1) positivism; (2) postpositivism; (3) participatory; (4) constructivism; and (5) critical theory. In today’s positivist view, the aim of inquiry is to predict and control natural phenomena. Positivism is rooted in a realist ontology (there is “a single identifiable reality”), a dualistic and objectivist epistemology (the inquirer and inquiry are independent of one another), and an axiology that views the only goal for, or the only value24 in, doing research is to obtain a better understanding of reality (p. 102-103). The aim of a post-positivist view in research is to “attempt to get as close to the answer as possible” (p. 110). Post-positivism has a modified realist ontology (reality exists, however we are only imperfectly able to apprehend it), a modified dualistic/objectivist epistemology (objectivity continues to be of value, however the emphasis on dualism is 23 For example, in the year 2004, Guba and Lincoln indicated that there are only four paradigms that exit which included: positivism, postpositivism, critical theory and constructivism. In the year 2011, the authors, in addition to Lynham, added a fifth paradigm, the participatory paradigm. Furthermore, as argued by Laurel Richardson (through personal communication with Lincoln, Lynham, and Guba), the paradigms “are fluid, indeed what should be a category keeps altering, enlarging ... [and] the boundaries between the paradigms are shifting” (Lincoln, Lynham, & Guba, 2011, p. 100 and 116). Also, different theorists describe the paradigms differently. For example, Crotty (1998) has described four paradigms, which include: positivism, post-positivism, constructionism, and interpretivism. 24In this context, I am taking up the noun ‘value’ as defined by Guba and Lincoln (2004); “what do researchers seek as important products within inquiry research?” 61 decreased), and an axiology that is similar to that of positivist view; the only value in doing research is to get as close to reality as possible. In contrast to positivism and postpositivism, the aim of inquiry from a participatory paradigm is to explore what is valuable to human life (Lincoln, Lynham, Guba, 2011). A participatory view is rooted in a subjective-objective ontology (reality is socially constructed and co-created by the knower [inquirer] and the known [inquired]), a critical subjective epistemology (there are four ways of knowing which include: experiential, presentational, propositional, and practical), and an axiology that views the purpose of research to be to “change the world” (p. 106-112). The aim of inquiry from a constructivist perspective is to “understand and interpret … [a] phenomena … from the joint construction/reconstruction of meaning of lived experience” (p. 106). Constructivism is rooted in a relativist ontology (“realities exist in the form of multiple mental constructions, socially and experientially based”), a transactional and subjectivist epistemology (“inquirer and inquired into are fused into a single entity”), and an axiology that sees the purpose of research to be “social emancipation” (p. 106-111). Lastly, the aim of inquiry from a critical perspective is to access “social power structure(s)” (Lincoln, Lynham, Guba, 2011, p. 106). Critical inquiry is rooted in historical realism ontology (“a reality is assumed to be apprehendable … [which] over time [has been] shaped by a congeries of social, political, cultural, economic, ethnic, and gender factors, and then crystalized (reified) into a series of structures that are not (inappropriately) taken as ‘real’”), a transactional and subjectivist epistemology (“the investigator and the investigated object are assumed to be interactively linked, with the values of the investigator inevitably influencing the inquiry”), and an axiology that is grounded in the value of seeking “to change existing education as well as other social institutions’ policies and practice” by demonstrating “the interactions of 62 privileged and oppressed as they relate to race/ethnicity, gender, physical or mental ability, and age” (p. 106-111). There are important elements of the philosophical underpinnings of critical inquiry that I would like to further discuss, as they had important implications for my role as an inquirer in this study. These include its ontology (historical realism) and epistemology (transactional and subjectivist). Like postpositivism, critical inquiry maintains that there is a ‘reality’, which is assumed to be obtainable. Within the critical inquiry paradigm this reality is referred to as a “true consciousness” (Guba, 1990, p.24) or an “informed consciousness” (Guba & Lincoln, 1994, p. 110). However, in contrast to postpositivism, the understanding of what constitutes reality in critical inquiry is located in historical, economic, racial, and social infrastructures of oppression (Lincoln, Lynham, & Guba, 2011). The role of the inquirer, then, is to bring individuals to a level of ‘true consciousness’ (Guba, 1990, p. 24) where they become aware of how structures may be impacting them and how they could possibly be changed (Guba & Lincoln, 1994). In Chapter Four, when discussing the methodology guiding this study, I will discuss how my methods as an interviewer, my data collection during my fieldwork, and my methods of data analysis were shaped by the ontological and epistemological underpinnings of critical inquiry paradigm. In comparing the different paradigms, Guba (1990) maintains that each has its own merits and produces knowledge with differing substance and scope. Therefore, there is no one paradigm that is superior to another. Guba’s stance on the value of each paradigm is particularly important for the field of CR. The advancement of CR as a preventative outpatient program for patients with HD is multifaceted. The process requires various forms of knowledge. For example, evidence on the efficacy of different exercise intensities on physiological outcomes 63 such as changes in: (1) biomarkers for inflammation; (2) glycemic index; and (3) body composition are important in structuring the exercise component of the program to best meet the physiological needs of the patient population (Beckie, Beckstead, & Maureen, 2010). This type of knowledge is best obtained through research that is guided by postpositivism paradigm; research that is grounded in conventional science and that can be replicated. However, as I demonstrated in Chapters One and Two, CR is a comprehensive care program involving other components such as the delivery of counselling. In providing the best form of counselling within the context of CR, evidence evaluating the different forms of counselling (e.g., autonomy-supportive or self-efficacy-enhancing) are needed (Mildestvedt, Meland, & Eide, 2007). This type of knowledge can be obtained through studies rooted in other paradigms, including critical inquiry. Therefore, depending on the purpose of the study and its particular research question, researchers ought to select paradigms that allow for the exploration of the phenomenon and research question. Then the question to be answered for my study is, how did critical inquiry paradigm allow me to best explore the experiences of patients living with HD with utilizing a CR program? To answer this question, I will commence by pointing to some of the complexity inherent in CR utilization. 3.3. Complexity of CR Program Utilization There are a number of conditions that supported the adoption of critical inquiry paradigm on CR program utilization. To begin, the available empirical data that had looked at the underutilization of CR programs (discussed in Chapters One and Two) has pointed to social, personal, and contextual influences such as age, race, socioeconomic status, geographic location of home residence, and gender as some of the influences that were associated with HCP referral patterns, and patient rates of program enrollment, attendance, and completion. Furthermore, 64 empirical data on chronic illness had pointed to the ways in which the illness experience is constructed within a complex interplay of social, political, and economic contexts (Anderson, Blue, & Lau, 1991; Anderson et al., 2003; Browne, 2007; Lynam et al., 2003; Perry, Lyname, & Anderson, 2006) (discussed in Chapters One and Two). For example, gender, family care-taking responsibilities, ethnicity, and common discourses such as ‘healthcare close to home’ are social factors that influence health, illness experience, and access to HC (e.g. CR programs). Also, as discussed earlier in this dissertation, values of prolongation of life, cure, and technology are prominent in the field of cardiology and they have and continue to exert power over the field through the restructuring of its different areas of practice. For example, there are more HC dollars being invested into the development and provision of acute cardiac care, and significantly less invested into the development and maintenance of outpatient clinics such as CR programs. Thus, the complex nature of CR program utilization appeared to necessitate an examination of it not as an isolated phenomenon, but rather as one that is embedded within social and political contexts that overlap at the individual, HCP, and HCS level. The above findings warrant consideration for how and why the social locations of cardiac patients may be impacting referral, enrollment, and completion patterns. There ought to be an exploration of the nature of the conditions that facilitate or constrain the ability of persons to utilize CR programs. For these reasons, I located this study within the critical inquiry paradigm. More specifically, the theoretical perspective of intersectionality was used as a lens to guide many aspects of this study. 3.4. Critical Inquiry Paradigm Given the aim and scope of this chapter, it is impossible to do justice to all of the critical traditions and critical theorists that have contributed to the critical theorizing that have over the years been re-conceptualized into today’s critical theory. That being said, I agree with Collins 65 (2015) and Granzka (2014) that the true understanding of critical theory, and the act of using it responsibly, involves understanding how the theory came to be and what content characterizes it. Therefore, to prevent the risks of just ‘mentioning’ that this study will be situated within a critical inquiry paradigm, a state by which a theory can become weakened and its complexity and original intent can become distilled (Knapp, 2005), critical inquiry as the meta-theoretical lens informing my study, I would like to build on my earlier discussion of the philosophical underpinnings of critical inquiry, by providing a brief and general overview of its roots and pioneers. The roots of critical theory as a social theory can be traced back to the works of the 19th and 20th century social critical theorists Karl Marx (Bohman, 2016; Collins, 2019; Garrett, 2009; Kim, 2005; Porter, 2012), Georg Lukàcs (Panyotakis, 2002), as well as Max Horkheimer, Theador Adorno, Erich Fromm, Walter Benjamin, Jürgen Habermas, and Herbert Marcuse (Bohman, 2016; Collins, 2019; Horkheimer & Adorno, 1969). Each theorist in different and similar ways studied various relationships, including: (1) power and domination; (2) ideological structures and economics; and (3) ideological structures, technological developments and mass culture. Arguing that ideologies have infiltrated the consciousness and ideas of people, they argued for a critical examination and challenging of structures and ideologies. Over the years, social scientists and philosophers have adopted and re-conceptualized the aims and assumptions of critical theory. Currently, there are many forms of critical theory including, but not limited to, feminist theories, critical race theories, cultural theories, gender theories, queer theories, and intersectionality. Defining critical theory can be a difficult task, as: (1) there are numerous critical theories; (2) the tradition of critical theorizing is always changing and evolving (Kincheloe & McLaren, 2005; Kincheloe, McLaren, & Steinberg, 2011); and (3) to 66 provide a fixed definition or a blueprint of the sociopolitical and epistemological beliefs of critical inquiry will misread the complexity inherent in the theory (Kincheloe, McLaren, & Steinber, 2011). However, all critical theories do have some common key tenets that are rooted in the works of the 18th and 19th century theorists. All critical theories examine, critique, and challenge the current status quo. They examine the taken-for-granted ideologies, and processes of power and domination. They all possess “the power to affect progress in or transform human life” (Schwandt, 1990, p. 274). Critical theorists seek knowledge for the purpose of social change (Kincheloe & McLarent, 2005). Max Horkheimer argued that in order for a theory to be ‘critical’, it needs to explain social problems, offer practical solutions for the problems, and follow the norms of criticism in the field (Horkheimer, 1982). This study was guided by the critical theoretical perspective of intersectionality. Intersectionality as a theoretical lens was chosen because it would allow for the exploration and examination of the numerous social, personal, political, and economic influences that appeared to be associated with CR program underutilization (based on available empirical data). That is, it would allow for the capturing of the “multi-level interacting social locations, forces, factors and power structures that shape and influence human life and health” (Hankivsky et al., 2014, p. 1). 3.5. Intersectionality Intersectionality has been taken up as both a theoretical and methodological inquiry. It is situated within the broader landscape of critical inquiry. Hankivsky (2014) defines intersectionality as a perspective that: … promotes an understanding of human beings as shaped by the interaction of different social locations (e.g. ‘race’/ethnicity, Indigeneity, gender, class, sexuality, geography, age, disability/ability, migration status, religion). These interactions occur within a context of 67 connected systems and structures of power (e.g., laws, policies, state governments and other political and economic unions, religious institutions, media). Through such processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created. (p. 2) The emergence of intersectionality ought to be credited to the works of the many US Black feminist scholars who at the time of the numerous social justice projects taking place in the 1960s and 1970s critiqued and challenged the universalizing of white, middle-class, American women’s experiences as “the women’s” experience (Choo & Ferree, 2010; Collins, 2015; Collins 2019). The scholars argued that because racism, patriarchy, homophobia, sexism, and class exploitation all collectively impacted and shaped African American women’s life and experiences, race-only or gender-only frameworks were only partially able to provide an analysis of the social injustices that characterized their lives (Taylor, 2017). The earlier works of the black feminist scholars reflect many of the underpinnings of intersectionality. The term “intersectionality” was not coined until the emergence of Kimberlé Crenshaw’s articles in 1989 and 1991 (Collins, 2000; Collins, 2019; Hankivsky, 2014). Drawing on the limitations of both feminist and antiracism perspectives, Crenshaw argued that a new angle of lens was needed for “informed social action” (Collins, 2019, p. 25). For Crenshaw, intersectionality, a term that she originally used as a metaphor at the time, was able to name and point to the convergence of “intersecting systems of power that created blind spots in antiracist and feminist activism” (Collins, 2019, p. 26). The analytical framework of how intersecting power relations of gender, class, race, and sexuality affected the lives of African American women provided for new frameworks for analyzing the political, social, and cultural realities of other groups (Collins, 2000; Collins, 2015). 68 Today, intersectionality is taken up by a variety of disciplines, including nursing, sociology, psychology, and political sciences, to challenge issues of inequalities and to promote social justice (Collins, 2019; Collins & Bilge, 2016; Hankivsky, 2014; Moradi & Grzanka, 2017), and in many cases it has “developed in new directions, detached from its radical origins” (Gkiouleka et al., 2018). Various scholars have pointed to the implications of translating intersectionality, a theory rooted within “legal studies and the humanities as a way of making sense of interlocking societal oppression experienced by subordinated groups” (Syed, 2010), to other disciplines. Furthermore, issues of translating the theory into methodological practices has also been a point of discussion amongst many researchers who have drawn on intersectionality (Bauer, 2014; Cole, 2009; Moradi & Grzanka, 2017; Syed, 2010). Hankivsky and her colleagues have pointed to five different issues related to the translation of intersectionality into methodologies. These issues are: (1) the “disconnect between intersectionality scholarship and the conceptualization of research questions and designs”; (2) “a lack of certainty as to how, when, and where intersectionality frameworks should and can be applied”; (3) the challenge of “applying intersectionality to empirical designs”; (4) limited knowledge on “whether all possible intersections might be relevant at all times, or when some of them might be most salient”; and (5) the challenges of accessing specific types of data such as “data that represents multiple groups and which reflect significant variations within those groups across genders, socioeconomic statuses, social classes, and sexual orientation” (Hankivsky et al., 2010, p. 3). Earlier in this chapter I drew on the complexity of CR program utilization to discuss the value and appropriateness of intersectionality in guiding this study to answer its overarching research question. My goal in addressing intersectionality is to further our understandings of the complexity inherent in the utilization of CR programs by cardiac patients. In the sections that 69 follow, and informed by the cautions cited above from Hankivsky et al (2010), I draw on Collin’s work, Intersectionality as a Critical Social Theory (2019), to discuss the core constructs and guiding premises of intersectionality that I used as a lens to guide many aspects of the conduct of this study. This discussion also highlights how the different issues that have been raised by Hankivsky and colleagues (2010) were navigated within this study. 3.5.1. Core Constructs of Intersectionality Collins (2019) identifies six core constructs of intersectionality. These include: (1) relationality; (2) power; (3) social inequality; (4) social context; (5) complexity; and (6) social justice.25 According to Collins (2019), within intersectional inquiry, these core constructs are either topics of exploration or methodological premises that guide the inquiry itself, or both. Furthermore, in any given inquiry, these six core constructs could be present either in isolation or in combination with one another. Relationality refers to the relational processes that connect different categories of race, gender, class, and other systems of power. Relationality provides an analytical lens into how different social positions obtain meaning and power in relation to other social positions. Power denotes looking at how intersecting power relations produce social divisions between the different categories. Therefore, intersectionality posits that race, gender, class, ability, age and other categories cannot be fully understood separately from one another. Social inequality points to the processes by which power relations produce social inequalities and the social problems that they encompass. More specifically, intersectionality looks into the forces that lay within the particulars of the different categories and how they create social inequality. Social context refers to the context of knowledge production. That is the internal 25 These core constructs are not unique to intersectionality, as they have also been taken up by other projects. While intersectionality does share these terminologies with similar projects, its constructs are not derivative of them (Collins, 2019). 70 structure and dynamics of the interpretive community and its relationship to the distinct social locations of the individuals and groups being studied. Complexity refers to the examination of the connectedness of the different categories, the utilization of multiple lenses, and the usage of different methods for investigating complex phenomena. Lastly, social justice refers to intersectionality’s commitment to social justice. While the above core constructs have been presented as discrete categories, each one can inform the other (Collins, 2019). Furthermore, different projects grounded in intersectionality can place varying degrees of emphasis on each construct (Collins, 2019). Collins does, however, point to relationality as a fundamental construct in intersectionality. She notes that the act of removing it from an intersectional project would entirely strip the meaning of intersectionality from the inquiry. For the other constructs, Collins calls for individual analyses of whether the absence of the construct would lessen the value of the particular inquiry. 3.5.2. Core Premises of Intersectionality Collins (2019, p. 44) has also identified the four guiding premises of intersectionality, which are the assumptions that inform and guide inquiry. (1) Race, class, gender, and similar systems of power are interdependent and mutually construct one another; (2) Intersecting power relations produce complex, interdependent social inequalities of race, class, gender, sexuality, nationality, ethnicity, ability, and age; (3) The social location of individuals and groups within intersecting power relations shapes their experiences within and perspectives on the social world; and (4) Solving social problems within a given local, regional, national, or global context requires intersectional analyses. 71 3.6. Application: Intersectionality and Shining Light on the Complexity of CR Program Utilization Intersectionality guided many aspects of this study. My goal in this study was to produce research findings that would be applicable to better understandings of the experiences of diverse cardiac patients who will experience the various milestones of CR program utilization. The core construct ‘relationality’ of intersectionality guided me to strive for what Anderson (2000) calls “an inclusive scholarship” (p. 226). Anderson describes inclusive scholarship as the social production of knowledge that reflects different social locations. In this study, such inclusivity entailed listening to the voices of not only women, but also men, and the voices of individuals from different ethnic groups, different socioeconomic and education statuses, different age groups, and different geographic location of home residence. In Chapter Four, in describing the specific methods taken to recruit participants for this study, I will therefore explain strategies that were taken to allow for the opportunity of different voices to be heard. One such strategy included having limited exclusion criteria, where most adult cardiac patients, regardless of their gender, age, class, ability, and/or other sociodemographic would have the opportunity to be involved in this study. As argued by many scholars, intersectionality impacts all people (Gkiouleka et al., 2018; Yuval-Davis, 2015). For example, as individuals, we experience day-to-day lives not entirely as gendered persons, but as persons who are impacted by the simultaneous forces of our different locations (Anderson, 2000). Therefore, individuals experience different degrees of disadvantage and privilege, leading to varying degrees of experiences of domination and oppression as related to their specific context (Gkiouleka et al., 2018; Nash, 2008). There are multiple ways by which cardiac patients can experience both vulnerability and privilege in their ability to utilize CR programs. Thus, in 72 this study, while I was informed by previous empirical data that had pointed to various social influences such as female sex, older age, and lower socioeconomic class, amongst many, as factors that impacted CR program uptake, intersectionality guided me to resist essentializing any categories before collecting and analyzing my data. During the conduct of this study I was cognizant that the intersections between disadvantages and vulnerability can emerge in unexpected ways and that while individuals as members of the same group (e.g. all individuals who self-identify as being a woman) “may share common positions with specific material, political, and institutional implications within a power structure” their individual experiences of this “membership” may be different (Gkiouleka et al., 2018, p. 93). Therefore, to be able to obtain inclusive scholarship where variability in experiences would be obtained and acknowledged, in this study I strived to recruit participants across various sociodemographic locations. Furthermore, it was my goal to resist the act of essentializing experiences within any social location through out my data analyses and the presentation of the findings. Further guided by the key assumptions of intersectionality, in this study no specific category of social identity (e.g. age, gender, ethnicity, race, ability) was necessarily considered as more important than the others (Gkiouleka et al., 2018; Hankivsky et al., 2010) in my data collection and data analyses. As highlighted by Staunaes (2003), “… there is not a predetermined or pre-hierarchical pattern between categories. It is not gender first, then ethnicity, or the reverse, first ethnicity, then gender” (p. 105). Rather, intersectionality’s core construct of ‘relationality’ and ‘power’ guided me to critically explore the intersections of individuals’ social locations and their systems of power. This process involved a move away from the traditional additive approach, where categories (e.g. age, gender, race, class, ability, sexuality) are viewed as dichotomous and are simply added to one another (Hankivsky & Cormier, 2009; Hankivsky et 73 al., 2010). Instead, my goal was to explore and critically examine how experiences of cardiac patients with utilizing CR programs were shaped by the intersections of various categories. Intersectionality’s core constructs ‘relationality’, ‘power’, and ‘social inequality’ (Collins, 2019), provided a lens for me to be cognizant of the “multidimensional and relational nature of social locations and [to place] lived experiences [of cardiac patients], social forces, and overlapping systems of discrimination and subordination at the center of [my] analysis (Hankivsky et al., 2010, p. 3). Therefore, intersectionality provided a lens through which I simultaneously analyzed both individual experiences and the context (Gkiouleka et al., 2018). Also, the theory guided how I operationalized constructs of ‘older adult’, ‘race’ and ‘ethnicity’, and ‘sex’ and ‘gender’; away from their uptake as discrete, independent variables, to constructs that are located within complex sociopolitical contexts. This entailed, for example, when analyzing the narratives of the study participants, examining how essentializing discourses such as “women don’t like to exercise” or “older adults are too frail to engage in intense exercise” (these are postulations from studies that I have reviewed in Chapters One and Two), impacted the variations in the experiences of cardiac patients with utilizing a CR program. Upon reflecting on the findings of this study, I believe that it is this critical attentiveness to not only the social locations of the cardiac patients, but to the intersections of their various forms of social locations and the various structures of the HCS that allowed for me to obtain inclusive scholarship and to be able to shed more light on the complexity of CR program utilization. The construct ‘social context’ (Collins, 2019) continuously guided and challenged me to be reflexive about: (1) my purpose for conducting this study and for taking up intersectionality as a lens; (2) the assumptions that I brought to the research process; (3) my location within the 74 hierarchy of the social order in relation to the study participants and other individuals who were indirectly impacted by the study (e.g. family members/patient care givers, HCPs); and (4) the various ways by which this study and its processes may have positioned and (re)established certain subjective positions of the study participants (Hankivsky et al., 2010). Lastly, guided by intersectionality’s core construct ‘social justice’, I viewed my work in this study as a catalyst for change. In this dissertation, I take up the notion of social justice as defined by Reimer-Kirkham and Browne (2006). The nurse scholars describe justice as a broad term that pertains to fairness in determining what a group is owed or deserves. The adjective of social then contextualizes justice to social groups and how justice and injustice are maintained in social institutions. Social justice provides an awareness of individual experiences as entrenched within the larger socio-economic, political, and cultural contexts. In the context of my study, working towards social justice involved addressing why cardiac patients may face challenges in their utilization of CR programs within the social, economic, cultural, and personal contexts of their lives and that of the structure of the health care system. By illuminating some of the social, economical, and political forces that I observed were are operating, I was able to unpack the complexity of CR program utilization. Indeed, I was able to answer some of the ‘why’ and ‘how’ questions that I had been asking throughout Chapters One and Two. By making explicit how such forces influenced the ability of cardiac patients to utilize CR programs (at all milestones in the CR program utilization journey), in Chapter Seven I was able to provide a starting point for action to change practice, research, and policy. Overall, drawing on the theoretical perspective of intersectionality, in this study I recognized and acknowledged the relational constructs of social inequality (Hankivsky et al., 2010); that is, I became aware of and sensitive to the forces that played a role within the 75 particulars of the different social locations that cardiac patients occupied and how such social locations led to disparities in CR program utilization (Collins, 2019). 3.7. Chapter Summary In this chapter I positioned the meta-theoretical context of this study within a critical inquiry paradigm. Having located this study within the critical inquiry paradigm, I described intersectionality as the theoretical lens that I drew on to pursue my research. I argued that intersectionality allowed me to critically explore how all of the different forms of social locations, and their interplay, impact the experiences of cardiac patients when they are trying to utilize CR programs. I now turn to providing an outline of the research methodology and different methods that were used to generate data and findings in the context of the theoretical perspective intersectionality. 76 Chapter Four: Implementing the Study 4.1. Introduction Research methodologist Michael Crotty (1998) suggests that, when developing a research proposal, there are two key questions that need to be answered. The first question is, “what methodologies and methods will we be employing in the research we propose to do?” (p. 2) The second question is, “how do we justify this choice and use of methodologies and methods?” (p. 2) He then further argues that the answer to the latter question is grounded in the research question of the study. In this chapter, I will be addressing the two methodological questions above posed by Crotty. The research question guiding this study was: How do the intersections of: (1) social and economic contexts of the health care delivery; (2) social and personal contexts of patients’ individual lives; and (3) patients’ navigation through their chronic illness journey, shape the experiences of patients with heart disease with respect to utilizing CR programs? The nature of my research question meant that I needed to understand the subjective experiences of cardiac patients, as they were located within their world—a world that was shaped by their individual social and personal contexts, chronic illness journey of HD, and the social and economic context of health care delivery. This led me to a qualitative or ‘interpretive’ methodology of research, as I was interested in studying human experiences occurring “in their natural settings” (Denzin & Lincoln, 2011, p. 3). Qualitative research involves an interpretive and naturalistic approach to the world (Denzin & Lincoln, 2005), and it allowed me to locate cardiac patients in their world, and offered me the opportunity to “turn [their] world into a series of representations” (Denzin & Lincoln, 2011, p. 3), through open-ended interviews and fieldnotes. 77 In this study, I chose to draw on the specific qualitative approach of interpretive description. Interpretive description aligns with interpretive naturalistic orientations, where there is a value for not only the constructed and contextual experience of each individual, but also for shared experiences (Thorne, Kirkham, & O’Flynn-Magee, 2004). Interpretive description allowed me to explore the varying degrees and dimensions of the diverse range of cardiac patients’ experiences with the utilization of CR programs. The key characteristics of the products of interpretive description (which distinguish it from other interpretive methods) are that they present ‘tentative truth claims’ that have potential for application to practice in an applied field (Thorne, Kirkham, & O’Flynn-Magee, 2004). The pragmatic focus of interpretive description was crucial for my study, as my ultimate purpose was to provide direction for practice, policy, and research that would enhance the abilities of cardiac patients to more fully utilize and benefit from CR programs. In what follows I will explicate in detail the specific methodology and methods that I drew on to answer my research question. My explication will commence with a brief elaboration on the methodology of interpretive description. Next, I will outline the different methods of data collection and analysis that I drew on. Within this discussion I will outline some of the steps that I took to ensure the scientific credibility of my study, including strategies I took to enhance the epistemological soundness and ethical conduct of this study. I will close this chapter with a discussion of the ways through which I intend to disseminate knowledge gained from this study. 4.2. Understanding Interpretive Description as a Methodology Interpretive description had its beginning during a time when qualitative researchers within the applied health field of nursing relied quite heavily on traditional methods from the social sciences to obtain credibility for their research findings (Thorne, 2016). Due to the need to 78 “locate” research within a certain methodological tradition and to follow the “rule structures” of each methodology, there began to be an increase in the concern for the applicability of the traditional methods to the “scholarship in the applied context” (Thorne, 2016, p. 30). The rise in concerns about the limits of the social science methodologies within clinical health contexts, and the practice of reshaping approaches within the traditional methods to meet inquiry needs, gave rise to the development of interpretive description (Thorne, 2016). Thorne, Kirkham, and O’Flynn-Magee (2004) define interpretive description as a methodology that “provides direction in the creation of an interpretive account that is generated on the basis of informed questioning, using techniques of reflective, critical examination, and which will ultimately guide and inform disciplinary thought in some manner” (p. 6). Interpretive description allows researchers within the applied health disciplines to use logic from their disciplinary fields to justify the use of specific methods that are rooted in other disciplinary orientations (Thorne, 2016). An important feature of interpretive description is that, while it is an approach to “disentangling methodological strategies and techniques from the theoretical assumptions inherent in the original social science disciplinary projects”, it is an approach that is grounded in its theoretical underpinnings (Thorne, 2016, p. 30). The ontological perspective underlying interpretive description is that, within the human experience, there are multiple realities and these realities may at times contradict one another. Interpretive description values both similarities and differences in individual expressions and attends to “time and context” within which individual expressions take place (Thorne, 2016, p. 82). The epistemological assumptions of interpretive description hold that the human experience is socially constructed and the inquirer (researcher) and the inquiry (study participant) influence one another. The 79 methodology therefore calls for studies to be conducted in the most “naturalistic context as possible” while attending to participants’ ethical and comfort rights (Thorne, 2016, p. 82). This study was guided by the ontological, epistemological, and axiological underpinnings of the critical inquiry paradigm (discussed in Chapter Three). Using intersectionality as a critical theory guiding this study, I acknowledged that while significant, not all social, contextual, and economical influences would necessarily be “consciously accessible” to the study participants. That is, I appreciated the fact that not all of the study participants would necessarily be aware of all the influences that may have been impacting their experiences with utilizing a CR program. However, using interpretive description as a methodology, which allowed me to examine patterns among and between study participants, I was able to obtain a better understanding of the influences impacting study participants’ experiences with CR utilization. 4.3. Research Methods In this study, I collected data from a range of data sources including: individual interviews, participant observations, and regular journaling. Drawing on multiple data sources is in keeping with the methodology of interpretive description, which positions itself within a philosophical tradition that values different ‘angles of vision’, obtained through different data sources, to achieve the ‘more probable truths’ (Thorne, 2008, p. 78). Similarly, scholars within the qualitative research realm overall have argued for the usage of different categories of data to obtain a more comprehensive knowledge of a phenomenon (Hall & Risk, 1999; Sandelowski, 2002). One of the core constructs of intersectionality, ‘complexity’, also calls for the usage of multiple methods to be able to capture the complexity that are inherent in “complex questions” (Collins, 2019, p. 47) (e.g. being able to capture the intersections of influences at various levels). 80 In the sections that will follow, I present my methods of data collection in chronological order (i.e., the order in which each method was undertaken). 4.3.1. Selecting Sites for Participant Recruitment and Fieldwork The original research plan for sites of participant recruitment and fieldwork was to engage in two locations. These included the downtown area of a major Canadian city and a smaller suburban center in the same province. There were a number of reasons why I had chosen to focus on these two particular districts. First, as part of my data collection strategies, my goal was to conduct participation observations at two hospitals within two separate Health Authorities. I refer to these as Site A and Site B to protect the identity of the hospitals and the confidentiality of the prospective participants. Site A was located in an urban downtown area and Site B was a community hospital with a different catchment pool for cardiac patients and with potentially different kinds of resources than Site A to run a CR program. Sites A and Site B followed the same principles of what types of services a CR program ought to provide. They were, however, not necessarily the same with respect to the patient populations served, referral procedures, how patients were contacted, how the program was structured, and the community of HCPs involved in the CR program. Therefore, by choosing the two sites, my goal was to obtain significant variation in patient experiences and the context of those experiences. Having two sites also had the advantage of further helping me mask the data linked to each site, thus making it easier to protect the confidentiality of the institutions and the individuals involved in the study. However, my goals for conducting fieldwork at and recruiting participants from two different sites did not unfold as I had originally planned, as I encountered challenges with recruitment of study participants. At the onset of this study, I commenced by obtaining ethics approval for, and conducting data collection within, Site A. However, during my time at Site A, I 81 had persistent challenges recruiting study participants. Over the course of two years, there were limited numbers of participants at Site A who contacted me with an interest for wanting to be involved in this study. At the same time, drawing on the tenets of interpretive description, in this study I undertook data collection and analysis concomitantly. As I collected and analyzed data from Site A, it was apparent that 3 of the study participants who I eventually recruited from Site A (total sample 19) included individuals who had also moved across different Health Authorities, hospitals, and CR programs, and were able to speak to their experiences within the different CR programs. Given the rich data I was able to obtain from the total of 19 participants recruited from Site A, and given the time frame for my doctoral dissertation, the decision was made with my dissertation supervisor and supervisory committee members to complete this study as a sing-site study. 4.3.2. Negotiating Entry Obtaining entry in any research “is an integral but sometimes difficult part of the research process” (Kawulich, 2011, p. 57). Negotiating entry to my research site involved different layers of formal and informal approval. I began by initially making informal inquires of knowledgeable colleagues (including two members of my supervisory committee) regarding the different CR programs within the province. I inquired into which CR programs would be the best sites for both participant recruitment and fieldwork data collection. The specific sites needed to allow for the variability in both the types of cardiac services they provided and the population of cardiac patients they cared for. One of the sites that was identified to be the most appropriate for this study was the same facility that I previously worked at as a bedside cardiology nurse. Once potential sites were chosen, I applied for and was issued formal ethical approval from the University of British Columbia Behavioral Research Board (Approval ID: H16-00339) to 82 conduct my study within one of the selected sites (Site A). As I have mentioned above, the initial goal of this study was to collect data from two sites. Therefore, within my initial ethics application I had also indicated that there was a possibility for the submission of amendments to the application if I identified a second site. The next stage involved further engaging in informal inquires by seeking out the assistance of knowledgeable insiders to help me in connecting with relevant gatekeepers at the study site (Site A). This process involved having email and teleconference conversations with registered nurses whom I previously worked with in a clinical setting as bedside nursing colleagues. These colleagues provided me with the contact information for the various Operations Leaders for the different clinical sites I wanted to recruit participants from and to conduct my participant observation fieldwork. Once I obtained the contact information of the various Operations Leaders (for both the sub-acute cardiology unit and the CR program of the facility), I began the formal process of personally contacting the different leaders to request a face-to-face meeting. In some instances, the first encounter was the first time that I was meeting with the leaders, in other instances, I had previously worked with the leaders either at the level of bedside nursing colleagues, or they were previously my clinical nurse leaders when I was a bedside nurse within the facility. During my individual meetings with each Operation Leader in charge of each clinical site (e.g., sub-acute inpatient cardiac care units and CR program of the facility), I provided a brief presentation of the aims of my study, and a detailed presentation on the procedures that would be involved during the processes of participant recruitment (within the sub-acute cardiology units and CR program of the facility) and, participant observations (within the CR program of the facility). I provided the Operation Leaders with a detailed overview of the ‘Letter of Introduction 83 and Invitation’ (Appendix A). This document was to be given to the prospective study participants by the bedside nurses26 within the sub-acute inpatient units during patient discharge and by the CR program HCPs during their times of patient intake or information sessions. My discussions with the leaders involved answering questions regarding: (1) who would be responsible for photocopying and refilling the forms to be given to the patients; (2) the extent of the involvement of the bedside nurses or CR HCPs in the recruitment process; and (3) how long the recruitment and/or participant observation would last for. The Operation Leaders expressed significant interest in and support for my study. Once I obtained the approval of the Operation Leaders, I asked for their permission to present my study and its procedures for recruitment and participant observations during staff meetings, which were attended by the Operation Leaders, Clinical Nurse Leaders of the clinical sites, and bedside nurses. Within each inpatient units I attended three different staff meetings over the course of two years to ensure that I was able to provide information on my study to newly hired staff and to staff who were not present at prior meetings. With respect to the CR program, I was invited to present my study during one of the program’s intake sessions. During this session, all of the HCPs were present expect for one nurse whom I followed up with a forty-five-minute teleconference to discuss the study. During these staff and CR HCP sessions, I presented the same information as I did to the Operation Leaders, including information arising from some of the questions that the leaders had raised during their meeting with me. The bedside nurses and the CR program HCPs consistently expressed that they were in support of my study. 26 Within Site A, bedside nurses are registered nurses who have obtained extra training in the area of cardiology nursing (e.g., reading telemetry strips). They are responsible for the nursing care of patients who receive inpatient cardiac care. The bedside nurses are also responsible for patient teaching during patient discharge. 84 4.3.3. Participant Recruitment for Individual Interviews and Participant Observation Participant recruitment took place immediately after I obtained the approval of the Operation Leaders, bedside nurses, and CR HCPs, and continued over the two years of the study. Study participants were recruited from three different care units within the facility where the study took place: (1) sub-acute medical inpatient cardiac care; (2) sub-acute surgical inpatient cardiac care; and (3) the outpatient CR program. Strategies of participant recruitment within each of these units involved registered nurses (RNs) and CR HCPs. The RNs and CR HCPs acted as a third party and were provided with copies of a “Letter of Introduction and Invitation” (see Appendix A). This letter was intended for prospective patient participants and it provided a detailed description of the study and information on how to contact me if they were interested in participating in the study. The RNs and CR HCPs were asked to distribute the letter to all of their newly admitted patients during a time that they believed was best (e.g., when the patient was stable or not in the middle of a medical/surgical procedure). The RNs and CR HCPs were not responsible for discussing the letter or the study with the patients. Their sole responsibility was to notify the patients that there was a study taking place, details of which were in the “Letter of Introduction and Invitation”. The patients were then provided with the opportunity to read the letter during a time and place that was most convenient for them. If they were interested in participating in this study, or if they had any particular questions that they needed answered regarding the study, the letter had my email address and phone number through which they were able to contact me. If within the email/phone call they indicated that they were interested in the study, I then provided them with a consent form (Appendix B: ‘Primary Participants: Consent to be Interviewed and/or to be Observed as a Study Participant’) either through a returning email, through regular mail, or in person. 85 4.3.4. Setting: The Hospital and CR Program The hospital in which the study was conducted was a large tertiary hospital, within the downtown area of a major urban city in Canada. The hospital is one of four major tertiary care centers in the province, and is one of the referral sites for cardiac services for the province. Being a major referral site for inpatient cardiac care services, the cardiac patient population in this hospital included patients who lived within and outside of the city and regional district. Patients from different parts of the province would travel to this hospital to receive highly specialized medical and surgical cardiac care. Indeed, the hospital I studied in provided inpatient care for patients travelling from communities over 2000 kilometers away. Over the course of fieldwork in my study setting I learned that similar geographic diversity was also characteristics of other cardiac referral sites in the province. The facility I conducted my study in provided both inpatient (e.g., acute/sub-acute cardiac services, cardiac surgeries, and cardiac catheterizations) and outpatient (e.g., pacemaker and implantable cardioverter-defibrillator clinics and heart function clinics) cardiac care. The hospital also possessed a CR program within its facility. The cardiac services in this hospital were located on three different floors; with the sub-acute and outpatient clinics being located on the top, the acute and surgical centers in the middle, and the CR program in the bottom floor. Patients receiving inpatient cardiac care in this hospital could visit one or all of the inpatient areas. For example, a patient could come to the center to receive cardiac catheterization and be discharged on the same day. Or, a patient could enter the center at any location and go through acute care, cardiac catheterization, surgery, and sub-acute services. The transition of a patient 86 from the inpatient cardiac care services to the outpatient CR program was carried out through a process of an electronic referral.27 The CR program within this hospital was a structured program that included exercise, education, and counselling. The HCPs involved in this program included: one registered nurse, one exercise physiologist, a pharmacist, a psychologist, and cardiologists who rotated on weekly schedules. Being a comprehensive program, other HCPs were also involved in the care of the patients. However, they were not always physically present within the sessions. These other HCPSs included a cardiologist, psychologist, pharmacist, and dietician. Participants for this study were recruited from the CR program and the inpatient sub-acute medical and surgical units. My participant observation field work for the study took place only within the CR program. The decision to conduct participant observation only within the CR program and not the inpatient sub-acute medical and surgical units was based on the available empirical data that guided this study. The numerous influences, at both the HCS and HCP levels, that had been pointed to as factors that appeared to be impacting utilization of CR programs by patients were influences that were operating within the CR program itself. Furthermore, one reason for the decision to conduct participant observations was to provide a context for the narratives of the study participants on their experiences with utilizing the program. In interpretive description, in addition to purposive sample, theoretical sampling is a foundational principle. For this study, this meant that the sites for data collection, including participant observation, were initially guided by the existing knowledge of the phenomena, and subsequently shaped by evolving interpretations of the data obtained (Thorne, 2016). Therefore, within the research ethics application, approval 27 The details of the CR referral system of this particular hospital is further described in Chapter Six when I discuss how study participants obtained referrals. 87 was obtained for the possibility of needing to conduct fieldwork within the inpatient units as well, though this did not turn out to be necessary. 4.3.5. Participant Sample 220.127.116.11. Sampling Strategy The inclusion criteria for this study included adult (19 years of age and older) patients with a diagnosis of any form of HD. The exclusion criterion included cardiac patients who were unable to speak English. This decision for the exclusion criterion was based on the limits of this doctoral dissertation being a small study with limited resources, which precluded access to translators. Beyond the inclusion criteria, the recruitment of the participants for this study was guided by the goal of obtaining a sample that would provide for sufficient heterogeneity to allow for an in-depth and comprehensive description of variations in the experiences of cardiac patients with utilizing a CR program, as well as providing for patterns of experiences that were shared across individuals (Sandelowski, 2000; Thorne, 2016). In this study, I used purposive sampling to recruit cardiac patients as the study participants. By using purposive sampling, I was able to recruit participants based on some aspect of the experience with utilizing a CR program that they would be able to shed light on (Thorne, 2016). There were two elements to CR program utilization journey that are crucial to highlight, as they guided my sampling process. First, individuals, whether it was their first experience with the journey or not, could come out of this journey at any point in time. For example, while some cardiac patients may have completed the entire program and gone onto a maintenance phase, others may not have made it into the program because they were never referred or because the referral never made it to the CR program. Depending on where within the journey individuals came out of the program, their experiences would be different from those who completed the 88 journey. Therefore, in my purposive sampling, I ensured that I recruited individuals along the entire CR program utilization journey. That is, I made sure to include individuals who: (1) had never been referred; (2) who had been referred but never received a phone call for their first appointment; (3) who went for their first intake appointment but then never continued; (4) who continued with the program but never finished; and (5) who finished the program but then had a relapse in their health status and had to return for another course of the program. The second element of CR program utilization journey that is crucial to highlight, as it also had implications for my sampling process, is that there are different social and contextual influences that are shown to be associated with the utilization of CR programs. These include patients’: (1) age; (2) sex; (3) ethnicity; (4) socioeconomic status; (5) education level; (6) location of residence, including distance to the referred CR program; (7) patient’s marital and/or relationship status; and (8) gender identity. Overall, the goal of study participant recruitment was to be able to obtain a sample that reflected the complexity of people accessing CR program utilization. I sought to include participants across all milestones of the CR program utilization journey and various social and contextual influences (see Appendix E for a table of “The Sociodemographic of Participants”). 18.104.22.168. Sample Size. The concept of sample size in qualitative methodologies has gained some attention within the last two decades (Edward & Baker, 2012; Emmel, 2015; Vasileiou et al., 2018). More specifically, there are discussions of whether sample size can be determined a priori and what sample size is considered as one that can allow for credibility of study findings (Edward & Baker, 2012; Emmel, 2015; Vasileiou et al., 2018). The methodology of interpretive description can be conducted with diverse sample sizes (Thorne, 2016). In my study, sample size was 89 determined by its aim and research question (Polit & Beck, 2017; Sandelowski, 1995; Thorne, 2016), the scope of the available empirical data, the epistemological stance underpinning the study, and by practical considerations such as time and resource (Edward & Baker 2012; Thorne, 2016). The available literature on CR program utilization had pointed to the underutilization of the program by a majority of cardiac patients. As I indicated in Chapters One and Two, it also pointed to the different social and contextual influences at HCS, HCP, and individual patient levels that were associated with underutilization. The aim of this study was to explore in more depth the subjective experiences of cardiac patients utilizing the program, to shed light on why and how the various influences operated in shaping experiences and ultimately influencing utilization. To work towards this end, I decided to experientially engage with a relatively small number of individuals who had experienced some or all of the influences involved in the complexity of CR program utilization. A relatively small sample size is consistent with qualitative methodologies (Polite & Beck, 2017), and allowed me to obtain and analyze in-depth accounts of patient experiences. However, I also strove to have a sample size that was large and diverse enough to allow my data to be more than just ‘thin’ description, which facilitated my ability to look for themes and patterns that can guide future practice (Thorne, 2016). This study had a total of 19 participants. The decision to stop recruitment was made in conjunction with my supervisor and PhD committee. Often in qualitative methodologies the concept of ‘saturation’ is used when making decisions as to when to stop recruiting study participants and collecting data. The concept of ‘saturation’ has its roots in the Grounded Theory approach and ‘theoretical saturation’ is used do guide participant recruitment and data collection (Glaser & Strauss, 1967). Theoretical saturation is the point at which further participant recruitment and data collection does not lead to any new insights about the developing theory 90 (Glaser & Strauss, 1967). Currently, researchers conducting qualitative studies have taken up the concept of ‘saturation’ and have applied it to notions of ‘information redundancy’, ‘code saturation’, and/or ‘meaning saturation’ (Edward & Baker, 2012; Emmel, 2015; Vasileiou et al., 2018). Thorne (2016) cautions about the use of the concept of ‘saturation’, as it implies that a researcher can confidently state that they have gathered and interpreted all possible data that is related to a particular phenomenon. Within the epistemological orientation of the discipline of nursing, researchers, practitioners, and/or policy makers ought to always allow for the possibility of new variations or diversities of a theme related to a phenomenon, even in the context of most patients fitting with a dominant pattern (Thorne, 2016). In this study, the concept of saturation was not taken up, rather the decision to stop participant recruitment was based on the diverse characteristics of participants in the sample that I had obtained that allowed me to be able to answer the complexity of my research question. As I will discuss below, I was able to recruit participants across all milestones of the CR program utilization journey and with diverse social and contextual influences. Further, in response to the various interview questions that I asked during the semi-structured interviews, the participants in this study shared with me in depth stories of their experiences with utilizing a CR program. This allowed for me to obtain a rich pool of data to draw from during my data analysis. The richness of the data that I had obtained also allowed for me to engage in intersectional analysis of various influences that were impacting participant experiences with using a CR program. 22.214.171.124. Study Sample Characteristics. Overall, 22 individuals contacted me with an interest in participating in this study. Three of these individuals did not enroll into the study. One withdrew her interest due to family matters that she had to attend to overseas, another had to withdraw his acceptance due to conflicts with 91 his work and life schedule, and one individual told me that he decided to not enroll into the study because he was “upset with the ‘system’”28. The remaining 19 individuals who had contacted me with an interest enrolled into and completed the study. During my time of participant recruitment, I also had six other individuals who contacted me via telephone. These individuals, however, indicated that they were not interested in enrolling into the study. Rather, they had contacted me wanting to obtain an appointment with the CR program. Not possessing the accurate information regarding which CR program facility they were to attend, I provided them with direction by telling them to go to their community HCP (e.g., general practitioner, nurse practitioner, general cardiologist) to obtain further information on their enrollment within a CR program. The people who did participate in this study were both female and male, and ranged in age from early 40s to early 80s. Thirteen participants were retired, three were on disability leave, and three were employed full-time. All three individuals who were employed left the ‘Salary’ question on the ‘Demographic Data Sheet’ (see Appendix C) empty. Fourteen of the participants were married or co-habiting with a partner, four were widowed and living alone, and one was divorced, single, and lived alone. Five of the participants self-identified as Asian immigrants. The remaining self-identified as American (two participants); South East Asian (three participants); Iranian/American/Canadian (one participant); Canadian/Aboriginal (one participant); and Canadian (seven participants) (see Appendix E: The Sociodemographic of Participants). 28 Within his email conversation with me, this particular person stated that he was “frustrated by the system”. Respecting his wishes and autonomy for not wanting to engage with the study, I did not further explore what he meant by ‘system’ and why he was ‘frustrated’. However, I thanked him for his email response and told him that if he had ever changed his mind he was more than welcome to contact me again, which he did not. 92 One of the participants who was interviewed for this study was enrolled into another CR program almost fifty kilometers away from the CR program that served as the site of this study. The CR program that he was enrolled into was closer to his home residence and therefore was his catchment site. This individual had the chance to be recruited into my study because during the time of recruitment, he was hospitalized for inpatient cardiac care within the study’s site of recruitment. The other eighteen study participants were enrolled into the CR program within which the study was conducted. One of these participants was originally enrolled into another CR program which she quit prior to enrolling into the CR program at Site A. With respect to the distance of the participants’ home of residence to the CR program within which they were enrolled, one of the participants lived in a rural community over 700 kilometers away. Four of the participants lived in communities ranging from approximately 6 to 20 kilometers away from the CR program. The remaining thirteen participants lived within close proximity of the CR program, ranging from 0.5 to 1 kilometer. Study participants varied with respect to where they were on the CR program utilization journey. Seventeen participants were undergoing the program for the first time. Two of the participants were on their second course of the program, where one had quit half way through his first enrollment and the other had completed his first course. Six participants were in the beginning phases of the program, which is the time from which they were referred to the time that they had gone in for their first intake appointment. One participant had already completed the entire course of the program, however she continued to be enrolled. The remaining twelve participants were along various points in their weekly CR program sessions. Over the course of this study, I also had a chance to observe other patients and their family member/caregivers, and the HCPs within the CR program. These other people were not 93 recruited directly study participants, but were people related to research participants’ CR experiences, and were people whom I came into contact with as I conducted my fieldwork within the CR program. In order to more fully understand the experiences of the study participants with the utilization of the CR program, I sought to understand the structures and the relationships that influenced those experiences. During my days of fieldwork, these other patients and family members/caregivers and the HCPs of the program were informed of my presence within the facility and of the purpose of my study. I explained that my role within the facility was as someone who was there to observe the study participants while they went about with their CR session. I did have copies of “Letter of Introduction and Invitation” (see Appendix A) with me, however, both the program participants and the HCPs preferred for me to give a brief five-minute introduction. Verbal consent to my presence and observations was obtained from every individual present at the time. No patients, family members/caregivers, or HCPs explicitly stated any objections to my presence. Many of the HCPs and patients expressed interest in my study and engaged me actively to have conversations with me about their experiences. The voices and stories of these individuals were collected within my fieldwork fieldnotes, which have provided further context for the experiences of the study participants in my data analyses. 4.3.6. Constructing the Data: Methods and Processes 126.96.36.199. Semi-Structured Participant Interviews. Interviews allow researchers to get close to the essence of a phenomenon experienced by individuals (Polit & Beck, 2017); in this study, the participant interviews allowed me to get close to the experiences of cardiac patients, from their own perspectives, regarding their utilization of a CR program. Part of understanding, examining, and acting on improving some of the established influences that impact cardiac patients’ ability to utilize a CR program requires the perspectives 94 of the cardiac patients themselves. Cardiac patients’ experiences of their social world and their ability to effectively access CR programs have remained at the margins of current research on CR program utilization. Scholars who have taken up intersectionality in their research projects call this approach ‘personal narratives’ (Hankivsky & Christoffersen, 2008; McCall, 2005) and describe personal narratives as a way of obtaining participant insights into how they position themselves in time and place (Hankivsky & Chritoffersen, Ludvig, 2006), therefore providing a method by which the “lived experience of intersectionality” can be obtained (Valentine 2007, p. 18). All interviews for this study were only conducted after informed consent was obtained from the study participants. In this study I conducted 19 semi-structured interviews, one with each participant that I recruited. In qualitative research, semi-structured interviews are used when the background literature review has provided some information and direction on the phenomenon of interest and therefore, researchers know the specific topics and questions that they want covered (Polit & Beck, 2017). For my study, the literature on the underutilization of CR programs by cardiac patients had pointed to influences such as patient demographics, comorbidities, physician referral practices, and wait lists. As I have indicated in Chapters One and Two, these influences required further exploration; we ought to understand how these influences shape the experiences of patients with the utilization of CR programs. Therefore, the interview questions, and their associated probing question(s), that I developed for my interview guide allowed for the exploration of the participants’ consciousness of the influence of the various factors on their experiences with utilizing a CR program (see Appendix F: Interview Guide for Semi-Structured Interviews with Study Participants). As I noted in Chapter Three, within the critical inquiry paradigm, ‘reality’ is referred to as a ‘true consciousness’ or an 95 ‘informed consciousness’, and while this reality is apprehendable, it may not always be obvious to the participants themselves. In the context of this study, this meant that not all cardiac patients who provided a narrative of their experiences with utilizing a CR program may have been cognizant of all the influences that may have impacted their experiences. Therefore, my role as an inquirer was to utilize various interview questions to bring the participants to a deeper level of consciousness. Scholars of intersectionality further warn that while the narratives of individuals “should be acknowledged … they should not be considered representative of any fixed social grouping” (Yuval-Davis, 2006, p. 20). Hankivsky and Christoffersen (2008) add that “at certain points in time it may be possible to identify cross-cutting categories of experience and oppression … for political and policy action” (p. 278). This is in keeping with the types of products that the methodology interpretive description seeks to obtain; a ‘tentative truth claim’ that has potential for application to practice, research, and policy (Thorne, 2016). For the conduct of the interviews, an interview guide was developed with pre-determined, open-ended questions that were organized in a specific order (see ‘Appendix F: Interview Guide for Semi-Structured Interviews with Study Participants’). The interview guide began with a broad, open-ended question that was meant to provide the participants with an opportunity to reflect on aspects of their experiences with utilizing a CR program that were most important to them. This question was: “Can you tell me about your experiences with using a CR program?” The broad nature of this question allowed most of the individuals to freely provide a narrative account of the various aspects of their experiences that were most significant to them with respect to their utilization of a CR program. Other questions were also formulated to prompt the participants, if needed, to speak to their experiences regarding various aspects of the CR program utilization journey. For example, while some participants freely, without any prompting, spoke to 96 how they obtained a referral and an intake appointment for the program, for others I used the interview question “Could you tell me about your experiences with the process by which you obtained a referral and an intake appointment for the program in which you are enrolled?”. Similarly, some participants freely spoke of their decision process regarding how they decided to use the program, while others were guided by the interview question: “How did you decide to use (and in some participant cases not to use)29 the program?” The interview guide, however, was not used as a checklist. During each interview, I followed the cues of the participants and my own analytic logic during the interview and during my analysis of previous interviews. For example, within this study I recruited one participant who spent the majority of his interview time reflecting on his life history. He discussed his career history, his hardship with his immediate and extended family, his immigration process to another country and then Canada, and his experiences with the death of his young child. He spent very minimal time talking about the particular CR program that he was referred to. For this participant, I realized that he was not in a time and place to discuss aspects of his experiences that were relevant to my study. While he did apologize several times for talking about the issues that he did, I assured him that he would be provided with another opportunity, if he wanted, to talk about his experiences with the CR program. Furthermore, as data collection and analysis commenced and progressed, I developed new questions to further explore the emerging patterns and themes. For example, during my early data collection and analysis, many participants talked about their family members as 29 As discussed in the ‘Study Sample Characteristics’ in section 188.8.131.52., in this study there were two participants who at some point within the CR program utilization journey had decided to quit a CR program. At the time of this study one participant quit the same program in which he was enrolled in at the time of the study many years ago and was going through CR for the second time. Another participant had quit a CR program within another facility before she had joined the CR program in which she was enrolled during her interview for this study. 97 barriers or facilitators to their utilizing a CR program. During my later interviews, I began to more explicitly incorporate questions that would further explore influence of family/friends/caregivers. The 19 semi-structured interviews I conducted were private, formal, and 60 to 90 minutes long. Eighteen of the interviews were conducted with the cardiac patients participating in this study alone. One of the interviews was with a cardiac patient and his wife. I also attempted to conduct three additional 20 to 30-minute follow-up interviews with three selected participants. These follow-up interviews were at my request. The three individuals were selected for follow-up interviews based on the nature of them being in the beginning milestones of their CR program utilization journey, as I wanted to further explore how their experiences with the CR program unfolded over time. Furthermore, as I will elaborate on in more detail in my discussion of data analysis, I also used these same follow-up interviews to obtain validation for my findings and for purposes of further exploration. One of the follow-up interviews was in person, whereas the other two were planned to be over the phone (at the request of the participants). Of these latter two, I was unable to conduct an actual follow-up interview with one of the two participants, as he had withdrawn from the CR program and expressed to me that he was not interested in talking about his experiences. Therefore, out of my three attempts, I was only able to conduct two follow-up interviews. All regular interviews were recorded. However, the two follow-up interviews that were over the phone were not recorded. During all of the interviews, I took brief notes on my observations, impressions, or points that I wanted to further explore with the participants during the interview. After the interviews, these notes served to remind me about the context of and my logic trail during the interviews. While each interview was audio-recorded and transcribed, these transcriptions only captured audible words, phrases, pauses, and moments of 98 silence, they did not capture the non-verbal communication that took place between myself and the study participants, the physical setting of the interview, and my own impressions of how the interview unfolded (Morse & Field, 1995). In this study, I therefore drew on the work of Emerson, Fretz, and Shaw (2011) regarding writing ethnographic fieldnotes to guide the creation of my fieldnotes not only during and after interviews, but also during my participation observations. The specifics of the strategies that I took will be discussed in detail in later sections of this chapter. Interviews were conducted in a location chosen by the participants. The participants were given the option to have their interview in a pre-booked private room at the facility that they were enrolled in for their CR program, in their home, or a library. The participants were also given the opportunity to choose other locations of interest to them. Seventeen of the participants chose to have their interview in a pre-booked private room in the facility that they received their CR program care. Two of the participants wanted their interviews at a coffee shop. Issues of privacy within a coffee shop were discussed with these two participants, and both participants voiced that they had no concerns with sharing their experiences in a public location. 184.108.40.206.1. My Role as the Interviewer. My job as the interviewer was to ensure that participants felt free to discuss all topics that were relevant to them as well as those I had on the interview guide, and that they were telling the stories from their own voices. Thorne (2016) cautions health care providers pursuing qualitative methods to not make the assumption that their skills and comfort with patient interviews within the clinical setting will translate into their interviews as researchers. There are a number of strategies that I took to support the success of my interviews. First, my interview guide was reviewed by my supervisor to ensure that the interview questions, and their associated probing 99 questions, were formulated in such that they were clear, easy to understand, respectful, and were able to direct interviews to the purpose of my study and research question. Secondly, I practiced conducting an interview with my supervisor to ensure that I was using appropriate non-verbal communication skills. Further, when listening to the audio recordings of my actual interviews, I gave particular attention to how the interviews unfolded and how I could improve in my interview technique for the remainder interviews. In conducting interviews, in addition to developing the communication skills to carry out the actual interview, there are other elements that Thorne (2016) calls for researchers to consider. The first element is learning to not lead; this had particular importance for me stepping into a researcher role with my background in clinical cardiology nursing. Learning to not lead required me changing my mindset of ‘I am the expert clinician who knows everything’ to ‘I am a researcher who has not experienced what the study participants have and I am here to learn from them’. Although my “shift into this new persona” was difficult, I routinely reflected on my interactions with the study participants in my fieldnotes to ensure that I was not leading the conversations. Furthermore, I drew on my supervisor to review my first couple of interviews to ensure that I was separating myself from the expert clinician and allowing the study participants to lead the interviews. The second element that Thorne (2016) calls for researchers to consider is the disclosure of the discipline. This refers to how and to what degree researchers will portray themselves to the study participants. Thorne argues that the act of disclosing our position within the nursing discipline has the advantage of providing individuals with some comfort in participating in our study and is an ethical act in that we are not misrepresenting our intent. However, self-disclosure also has disadvantages in that, if we disclose our positions within specific theoretical positions, 100 individuals may not want to participate in our studies. Furthermore, the act of locating ourselves with the discipline of nursing may drive individuals to participate in our studies purely with the intent to gain health care resources. Considering Thorne’s arguments and my commitment to critical inquiry paradigm that advocates for reciprocity, I attempted to conduct my interviews in a manner that fostered an interactive dialogue. I did this by disclosing my interest in the study (related to my clinical background) and my intent of being a learner. 220.127.116.11.2. Challenges of Interviews. Subjective knowledge gained purely from interviews has limits (Thorne, 2016), and taking information obtained from an interview at face value, as the most probable truth, is risky (Sandelowski, 2002). Sandelowski (2002) calls for researchers to remember the nature of the interview data. She argues, “interviews are not only socially constructed products, but also cultural products that combine memory, learned conventions, and narrative models for telling one’s story, with selected life events and conscious or unconscious motivations” (Sandelowski, 2002, p. 106). Furthermore, participants use interviews “strategically” to “present, account for, and even justify themselves and their actions” (Sandelowski, 2002, p. 106). While it is evident that subjective knowledge obtained through individual interviews has limits, they still possess strengths and continue to be a crucial element in knowledge development in the field of health (Thorne, 2016). However, as argued by Sandelowski (2002), researchers have got to “explicitly address the status they give to interview data, how they see them and, therefore, how they will treat them” (p. 107). Taking up Sandelowski’s (2002) advice, I was aware that I went into the study from a location of critical inquiry paradigm, where I valued in-depth- semi-structured individual interviews as a way to engage “with the voices that ha[d] not been listened to, to bring those 101 voices to the forefront” (Reimer-Kirkham & Anderson, 2010, p. 203). However, to fully understand the impacts of the different influences, the theoretical perspective of intersectionality calls for researchers to also attend to the processes of inequity and oppression across different levels within a society (Hankivsky, 2014; Hankivsky & Christoffersen, 2008, p. 277). From my intersectionality lens in this study, to be able to fully capture the complexity inherent in CR program utilization by cardiac patients, I needed to see beyond the nature of social categories of experience (e.g. how older adult women experience utilizing a CR program). Intersectionality provided a lens for me to examine these experiences as part of the infrastructure of the health care system and the CR programs. The significance of context in studies guided by intersectionality on health inequities has been acknowledge by many scholars (Gkiouleka et al., 2018; Hill, 2016; Kapilashrami, Hill, & Meer, 2015). In this study, while I valued individual interviews in that they provided me with themes and patterns about the experiences of cardiac patients with the utilization of CR programs, I also believed that I needed to draw on other data sources to put those experiences within a context. One key data source that I drew on was participant observations. 18.104.22.168. Participant Observation. Originally used in the late 1870s by anthropologists such as Cushing30 and Webb31 (Bernard, 1998; DeWalt & DeWalt, 2002), participant observation is currently the primary tool used by ethnographers (Emerson, Fretz, & Shaw, 2011; Thorne, 2016) to engage with and learn 30 In his study, Frank Hamilton Cushing (1879) spent four and a half years as a participant observer to study the Smithsonian Institution’s Bureau by observing Zuni Pueblo people, learning their language, and participating in their customs (DeWalt & Dewalt, 2002). 31 In her study, Beatrice Potter Webb (1888) sought to understand the lives of individuals who were ‘poor’ by working as a rent collector in poor neighborhoods (Bernard, 1998). 102 “from members of a cultural group, to understand their world view, and to describe their customs and norms” (Polit & Beck, 2012, p. 56). In a qualitative study such as interpretive description, more focused participant observation can allow for the recognition of and appreciation for social structures that lie beneath what otherwise would be seen as everyday actions (Thorne, 2016). This outcome of participant observation—the illumination of subtle and discreet social structures—can be particularly important for studies within the health field, where everyday clinical practices (e.g. patient referrals to and patient teaching about CR programs) and patient-healthcare provider interactions are everyday actions that are viewed as routine practices. Participant observation as a method of data collection is commonly used in conjunction with other methods such as interviews. In deciding whether to use participant observation, DeWalt and Dewalt (2002) argue that researchers need to consider the research question(s) that is guiding the study. As I explained in Chapters One and Two, the underutilization of CR programs by cardiac patients is a complex phenomenon; one that appears to be shaped by the social and economic context of the health care delivery. Therefore, the experiences of cardiac patients, obtained from the perspective of the patients themselves through in-depth individual interviews, can never be fully understood without also understanding the social relations and economic and political structures in which they are embedded. This understanding of the relations and structures can be more fully developed through the use of participant observation. Another major advantage of the use of participant observation in qualitative studies is that, when used in conjunction with other strategies of data collection, it increases the credibility of the study findings (DeWalt & DeWalt, 2002; Thorne, 2016). Participant observation allowed me to work from a standpoint that would not be influenced by pure subjectivity (Thorne, 2016), as might occur with interviews alone. Participant observation as a method of data collection was 103 a means for me to deepen the descriptions provided by key participants whom I interviewed (Marshall & Rossman, 1995). Furthermore, participant observation allowed me to observe for possible events that participants might not have been able to convey for various reasons (Marshall & Rossman, 1995). I also understood that participant observation needed to be deployed within the bounds of research ethics (e.g., by respecting participants’ rights to refuse to have me observe particular aspects of their care). Other advantages of using participant observation as a method of data collection included that it provided me with a lens into questions that I may have needed to ask during my individual interviews with participants, or into other research questions that needed further explorations (Shensul & Lecompte, 1999). Using ethnographic data collection techniques of participant observation, I conducted 16 hours of fieldwork in the CR program of the facility where I conducted my study. I collected observational data in the form of both descriptive fieldnotes and reflective journaling. During this fieldwork only two participants in this study provided their consent for me to shadow them during their CR weekly sessions. I spent approximately two hours (the full duration of a CR session) twice with each participant, accounting for 8 hours of my fieldwork. During my observations I followed the participants through the exercise and information components of their CR sessions. I also had permission from the CR program Operations Leader and HCPs to conduct two sessions of observations (each 4 hours long) of CR sessions, without shadowing any particular CR participant, accounting for another 8 hours of my fieldwork. My observations in both circumstances included making fieldnotes on matters such as: the physical layout of the program; the types of equipment available; and the informational materials that were made available to the participants verbally and in written form. I also made observations and notes on what I observed about the functioning of the CR program: for example, who the HCPs were; 104 who taught each component of the program; and the routine of the program (e.g., information sessions provided first, then the aerobic component, and finally the anaerobic component). Interactions including participants with participants, participants with program HCPs, HCPs with other HCPs, and my interactions with participants and HCPs were all recorded in my fieldnotes. The detailed observations formed a written record of my experiences and observations of the CR program’s infrastructure. This helped me to obtain a fuller understanding of the physical structure and routines of the program, as well as the patterns of interactions that took place within the program. 22.214.171.124.1. Fieldnotes and Journaling. In this study, fieldnotes included my observations, during both my fieldwork and my interviews. Fieldnotes became a significant source of data, providing an understanding of the complexity involved in the delivery and uptake of CR programs. I drew on my fieldnotes to deepen my understanding of the interplay and reciprocity between the participants, HCPs, and the overall infrastructure of the delivery of the program. Furthermore, based on my fieldwork and interviews, I also took the opportunity to make records of my experiences, feelings, and encounters. This process of journaling provided me with the opportunity to reflect on and to explore my values and my reactions (Thorne, 2016). For example, a few of my interviews proved to be very emotional for the participants, as they were sharing their personal experiences with their CR program utilization journey. I found these particular experiences to be emotional for me as well. Writing my reflections was an important opportunity to further explore those feelings (see ‘Appendix J: Journaling Example’). Thus, my journaling was also a written support for my reflexivity during my research process. My journaling and fieldnotes also provided an opportunity for me to have discussions about my experiences and observations with my 105 supervisor. The following is an example of my fieldnotes during one of my fieldwork observations: It’s interesting that the different components of this program are located within different physical spaces. The participants have to take the stairs to not only to get here, but also to get from the room where the information is presented to the room where they do their aerobic session. Two of the CR participants did mention that they would take the elevator and that they would meet the rest of the group in the exercise room. They managed to get to the room at approximately the same time as others who took the stairs. But I wonder how this makes people who have to separate from the group to take the elevator feel. How would this further reinforce their physical struggles, if they are feeling it? (Fieldnotes Entry, October 17th 2017) The fieldnotes sample provided above is illustrative of the types of notes that I took during my participant observations (see also ‘Appendix I: Fieldnotes Example’). It illustrates one component of the structure of the CR program—its physical structure—and the potential barrier that structure may cause cardiac patients participating in the program. Interestingly, similar reflections about the physical structure surfaced from three participants during their one-to-one interviews with me. Had I not engaged in the act of participant observation in my fieldwork data collection, it would have been more challenging for me to envision the types of struggles that they spoke about. 126.96.36.199.2. Challenges of Participant Observation. Like any other data collection method, participant observation also has its challenges. The act of “representing in written form” what has been observed and experienced within the field is taken up differently by different ethnographers (Emerson, Fretz, & Shaw, 2011, p. 1) and was at first a difficult task for me. My experience of difficulty was partly rooted in the fact that prior to going into my fieldwork sessions I was cognizant that the significance of my written descriptions of my observations were beyond the mere act of passively writing down “facts” regarding “what happened” (Emerson, Fretz, & Shaw, 2011, p. 9). My descriptions were going to 106 be shaped by my perceptions and interpretations (Emerson, Fretz, & Shaw, 2011). My challenge was then deciding on how I was going to go through my fieldwork while being attentive to what Emerson, Fretz, and Shaw (2011) call the “inevitable process of selection” (p. 13); that is, being attentive to what aspects of the CR program context I accounted and emphasized and what aspects I ignored and unconsciously marginalized. A related and important challenge of participant observation is knowing when the whole picture is obtained (Thorne, 2016). I also had to find ways through which I would be attentive to and transparent about how my sensitivities, meanings, and understandings shaped the manner in which I presented or framed my observations—observations which could otherwise be presented differently by other researchers (Emmerson, Fretz, & Shaw, 2011). The challenges of ‘selection’ and ‘presentation’ were particularly important for me, as I was entering the field of CR program as a cardiology nurse who had already “been socialized into ‘seeing’ the field with a particular professional lens” (Thorne, 2008, p. 80). As I indicated in Chapter One, I had been working as a clinical nurse in various areas of cardiac care. My previous observations of and discussions with patients who could benefit from CR but who, for various reasons, were not utilizing the program, had the power to potentially influence in a significant manner “what [I] [saw] and what sense [I] [made] of it” (Thorne, 2008, p. 80). To overcome the challenges of having a predisposed lens—one that was informed by my practice as a cardiology nurse, as a researcher who is interested in a specific problem, and as a clinical and research nurse who is informed by my disciplinary knowledge—I “rigorously and systematically ensure[d] that the lens through which [I was] looking [was] open, transparent, and clear” (Thorne, 2008, p. 80-81). There were a number of strategies that I drew on throughout my research study to achieve this goal. Firstly, the most significant factor that guided what I 107 observed, was the purpose of my study (Merriam, 1998). More specifically, the research question of this study directed me to what aspects of the CR program I commenced my observations from (Merrian, 1998). Furthermore, the theoretical perspective of intersectionality that I have discussed in Chapter Three also guided my observations within the field. As argued by Schensul, Schensul, and LeCompte (1999), “the most accurate observations are shaped by formative theoretical frameworks” (p. 95). For example, during my observations, I gave particular attention to conditions that may have constrained or enhanced the ability of cardiac patients to utilize CR programs, and I particularly looked for how such conditions may have been embedded within the social and economic contexts of the delivery of the program. To make such connections, I critiqued “taken-for-granted assumptions, analyze[d] discourses and structures that support[ed] the status quo, and [turned] a critical eye upon [my-] self (self-reflexivity)” (Reimer-Kirkham & Anderson, 2010, p. 199). Guided by the research question and by the theoretical underpinnings of this study, I developed an observation guide (see ‘Appendix G: Observation Guide’) that I drew on during my fieldwork and my individual interviews. This guide served as a directory for my observations in that it provided a direction for my focus. Some key points in this guide included: (1) making notes on the physical aspects of the environment; (2) making notes on the flow of the CR program including its hours of operation and the activities that it delivers; (3) making notes on the cost of the program and the presence/absence of resources for patients who cannot afford the cost to be subsidized; and (4) describing the HCPs involved in the delivery of the program (e.g. who was involved, how were they involved, what were their interactions with one another?). In addition to drawing on my observation guide, I also actively and continuously engaged in the act of journaling and being reflexive about my experiences and thoughts. This allowed me 108 to have greater insights into how my professional lens, values, and attitudes shaped what I saw, what I gathered as data, and how I interpreted my observations and collected data. Within this process of journaling, I actively challenged myself to think about what observations I may have been missing and what alternative interpretations could be drawn from my observations. This process of journaling took place prior to entering a field for my observations, during my time in the field, and immediately after. 188.8.131.52.3. The Stances of the Observer. In addition to determining where to begin observations and what to observe, another important element of participant observation was the decision of the extent to which I wanted to participate in the activities that I was observing (DeWalt, DeWalt, & Wayland, 1998). This decision was important because it would determine the type and quality of data that I would be able to obtain (DeWalt, DeWalt, & Wayland, 1998). It also would impact the credibility of the study findings. For example, too much involvement can result in the researcher taking a lot of the practices for granted (DeWalt, DeWalt, & Wayland, 1998). Too little involvement, on the other hand, can cause ‘reactivity’, that is “by observing something you bring it to the attention of those who exist within it in some manner that may not have been accessible before your arrival” (Thorne, 2008, p. 135). There are four observer stances that have been described by Gold (1958). These include: complete participant (being a member of the group being studied and concealing the role of the researcher), participant as observer (being a member of the group being studied and the group is aware of the presence and role of the researcher), observer as participant (being able to participate in some of the activities, however the role of the researchers is mainly to collect data and the group is aware of the presence and the role of the researcher), and complete 109 observer (the researcher does not participate in any group activities and her/his presence and role is completely hidden from the group. Each of the observer stances provided by Gold have their own advantages, disadvantages, and ethical implications. For the purposes of my study, I took the observer as participant stance. This allowed the group being observed to know of my presence and my primary role as a researcher to observe and collect data. This stance also allowed me to engage in nursing activities (within limits). For example, during one of my observation sessions, I helped with taking attendance and cleaning up after the session had ended. 184.108.40.206. Participant Demographic Data. In this study demographic data was collected on all 19 study participants. This data guided my research process in that it allowed me to contextualize the study sample. The demographic data collected included (see ‘Appendix C: Demographic Data Sheet’): (1) birth date; (2) self-identified sex; (3) self-identified gender; (4) relationship status (e.g. single, married, never married, and so forth); (5) self-identified ethnic background; (6) employment status and (if employed) current salary. In this study I also collected some general data pertaining to participant CR program utilization journey. This data was collected through a General Data Sheet (see ‘Appendix D: General Data Sheet’) and included: (1) whether participants had received a formal referral to a CR program; (2) who had referred them to the program; (3) whether they had attended their first intake appointment; (4) the number of sessions they had attended; and (5) whether it was their first time going through a CR program. The use of this data for my study was to gain an overview of the variability in the participant sample related to the CR program utilization milestones and the demographics of the participants. 110 4.3.7. Managing and Analyzing the Data Data management involves the protection, organization, and tracking of the constructions of the data, such that during data collection and analysis both raw data and constructions can readily be accessible in a credible manner (Thorne, 2016). In this study, I protected the confidentiality of the study participants by assigning an identification code number (SP #) to each participant. This code number was in turn attached to the interview transcript, General Data Sheet, and Demographic Data Sheet that related to the individual. The identifying coding system was then locked within a filing cabinet in my supervisor’s office at the University of British Columbia. Furthermore, when transcribing the audio-recordings, I made sure that all identifying information was either removed or modified. I used a protected email system, approved by the University Research Ethics Board, to create and store the transcriptions within files and sub-files. Data analysis is the process by which raw data obtained from the study is transformed into new ‘credible and meaningful’ knowledge (Thorne, 2016). In keeping with the methodology of interpretive description, my data analysis took place in parallel with my data collection. From the beginning of my data analysis, through to the end, each audio recording of individual interviews was transcribed by myself, verbatim, immediately after it was conducted. Furthermore, I re-checked each transcript by re-listening to the audio recordings. This process allowed me to become immersed in the data and the “nuances, words, phrases, and pauses, and to hear more deeply what the language contain[ed]” (Thorne, 2008, p. 143). I also engaged in a continuous process of self-reflection (through active journaling) about how my own experiences, biases, and disciplinary knowledge may have impacted whether I was attuned to prototypical or contrasting cases or to particular words and phrases. It was through these active processes—self-immersion within the interviews and transcriptions and self-reflection—that I was able to move 111 beyond the immediate impressions I obtained to gaining the essence of the whole (Thorne, 2016). Upon completing the first four transcriptions, I further immersed myself into the data by reading and rereading the transcriptions. This process gave me the opportunity to gain a clear sense of and a level of comfort with the content of the data. Next, still being at the stage where I had obtained the narratives of only four study participants, I began the subsequent stage of the analytic process; organizing the data within the interview transcripts, interview fieldnotes, and participant observation fieldnotes into various groups that represented similar properties. This process led me to further become engaged with the data, continually comparing and contrasting data bits. I found the following set of questions from Emerson, Fretz, and Shaw (1995) very helpful during this stage: “How do participants talk about, characterize and understand what is going on?”, “What assumptions are they making?”, “What do you see going on?”, and “What did you learn from this?” (p. 146). These questions helped me to develop interpretations of the data, rather than just causal explanations. They also helped me to become cognizant of the ordinary, the taken for granted, as well as the unusual (Emerson, Fretz, & Shaw, 1995). As I read and reread the data and the various forms of fieldnotes, reflecting on these questions, I began to produce memos. I made notes of these memos on the margins of my interview transcripts. At this stage I had to actively engage in self-reflections to ensure that I did not become committed to these memos and prematurely dedicate them as my final types of groups, codes, or themes. This process continued as my data continued to develop. As the memos began to increase in number, I began to draw on the analytic method of constant comparison derived from grounded theory methodology (Glaser & Strauss, 1967). While I did not conduct grounded theory, I was informed by its analytic methods. Interpretive description draws on the assumption 112 that “aspects of the reality that you [the researcher] are studying are socially constructed and that to uncover knowledge about them you [the researcher] will compare and contrast different kinds of manifestations of them” (Thorne, 2008, p. 99). This necessitates the method of ‘constant comparative analysis’ (Thorne, 2008, p. 99). This method of data analysis involved constantly comparing all data pieces to one another to identify any similarities or differences between them, therefore allowing for the identification of commonalities and patterns across the different cases (Thorne, 2008). The commonalities and patterns began to become apparent as I reread the data within the transcripts and fieldnotes line-by-line, making notes of statements that appeared to be significant, and noting the memos that I had created in the beginning phases of the analysis. I continued this process by asking the questions that were posed by methodologists Emerson, Fretz, and Shaw (1995), and critically examining relationships between participants’ accounts and the social and personal context of their lives and the structure of the CR program. This open approach to coding fostered a wide range of new memos and connections. The various memos began to fit together into groups and my analysis began to become more focused. For example, some of the initial memos that I had along the margins of the transcripts described various types of feelings that the study participants experienced associated with their diagnosis of HD. These feelings included: (1) shock; (2) fear; (3) opportunity; and (4) anxiety. However, as I examined these memos within their particular individual contexts and across individuals’ experiences and contexts, they began to fit together. They all appeared to fit within a group that described experiences beyond individual feelings as related to their diagnosis of HD. As I elaborate on in my findings Chapters Five and Six, the memos reflected experiences that moved individuals to a place and time where they felt an urgent need to make changes related to their cardiac disease. These groups of data, 113 however, were still not confirmed and had generic names such as ‘Category 1’. The locations of these groups of data in relation to other groups, and their data components, continued to evolve with newly emerging data, continued analysis, and through my consultations with my supervisor as well as other members of my supervisory committee. Through this inductive, iterative reasoning process of coding, reflecting, memoing, and discussions with my supervisor, my initial codes began to form and became refined. Themes were chosen to describe the common patterns of experiences of the participants with utilizing a CR program, and these themes were broad and theoretical in nature. Given my theoretical framing of this study, key components of intersectionality were incorporated into my analytic processes. During my analysis of the contents of the interview transcripts and fieldnotes, I explicitly paid particular attention to both how individuals experienced their social locations, and how these experiences were constructed in the study participants’ discussions of their experiences with utilizing a CR program. Guided by intersectionality, my analysis moved beyond assuming that “health outcomes may be caused by a number of contributing causes by asserting that numerous factors are always at play” (Hankivsky & Christoffersen, 2008, p. 276). Therefore, while reading through the transcripts and fieldnotes, I strived to move my focus away from single identities and experiences to examinations of a range of axes of social locations and contexts (Hankivsky & Christoffersen, 2008; Yuval-Davis, 2006). As explained in Chapter Three, the social categories were not simply added to one another in order to understand diverse experiences. Rather, by proceeding in my research without a predetermined set of social relations, I was open to uncovering the convergence of intersecting experiences. 114 To organize the emerging groups, I used a word document for each group, into which appropriate data sets were cut and pasted. Each document began with a generic name, and then the name then changed to one that was descriptive and that captured the essence of the data within it (Thorne, 2016). Over time, the names of the themes began to take form. During the analytic process, I also kept a separate word document encompassing data elements that I did not want to overlook and intended to give particular attention to during my next read of the data set (Thorne, 2016). These data elements appeared to be meaningful for different reasons, including that they were contrasting or model cases (Thorne, 2016). Another word document that was created included pieces of data that were important ‘quotable quotes’ (Thorne, 2016). During the analytic process, I invested significant energy into reflecting on how I made sense of the data. As argued by one of the originators of qualitative research, Glaser (1965), “the analyst should take as much time as necessary for reflecting and taking his [/her] thinking to its most logical conclusions” (p. 440). For example, during my analysis of the data, I further probed the data by asking critical questions such as “what is going on here?” and “does what I think I see fit the reality of the data?” (Strauss & Corbin, 1998, p. 45). This allowed me to dig deep into the data to see beyond the surface, but also ensured that my analytic thinking was grounded in the data rather than being speculative (Strauss & Corbin, 1998). Furthermore, it allowed me to reflect on how and whether particular data pieces were actually related to the phenomenon of CR program utilization, or if they were important ideas but related to possibly another research question (Thorne, 2016). I used what Thorne calls analytic memos for this reflective process. This entailed a word document into which I wrote my thoughts, questions, insights, and pieces of data whose analyses required further interpretive reflection. 115 4.4. Enhancing Credibility Each qualitative methodological tradition has unique guidelines and principles “by which it may be judged as theoretically, epistemologically, and technically sound” (Thorne 2008, 223). Thorne (2008) has outlined four essential evaluative principles for ensuring the credibility of the products of an interpretive description study, which are similar to evaluative principles in other methodological traditions. Thorne’s principles include epistemological integrity, interpretive authority, analytic logic, and representative credibility. 4.4.1. Epistemological Integrity. Epistemological integrity refers to the presence of a unifying thread that weaves together the epistemological assumptions, research question(s), and the methodology. Thorne argues that this allows for a “defensible line of reason” (p. 223), providing an opportunity to make transparent the logical nature of the research design and process. I aimed for epistemological integrity throughout my research. Knowledge claims arising from the data I collected and analyzed were compatible with the philosophical underpinnings of the theoretical perspective of intersectionality and the methodology of interpretive description. As well, the methods of inquiry were an appropriate fit for the research question. They allowed me to produce knowledge of the experiences of cardiac patients utilizing CR programs and about the context of the experiences of participants while utilizing a CR program. 4.4.2. Interpretive Authority. Interpretive authority refers to the trustworthiness of the study findings (Thorne, 2016). More specifically, it refers to the researcher taking ownership for the interpretations he/she makes and ensuring that the interpretations are grounded in the data rather than being based on his/her own biases (Thorne, 2016). Furthermore, it also refers to the researcher being able to 116 make transparent “knowledge about the particular” and common knowledge (Thorne, p. 225). In this chapter, within my discussion of data analysis, I have explained different strategies that I took to ensure the trustworthiness of my study findings. For example, I have discussed how I immersed myself in the data by transcribing each interview myself and rechecking my transcripts against the recordings for accuracy. Furthermore, I discussed how I took field notes immediately after each interview and wrote memos during my data analysis, which included my self-reflections about how my ideas were advancing and the pieces of data that required further thinking. In discussing the trustworthiness of findings, Paterson (1994) argues that research reports ought to account for the reactivity that can occur between the study participants and the researcher. That is, researchers need to be reflexive about how their own values, experiences, and behaviours inform and influence data collection and interpretation. Throughout this chapter, in my discussions of the different stages of the research process, I have outlined how I was reflexive by continuously journaling and meeting with members of my supervisory committee. 4.4.3. Analytic Logic. Analytic logic refers to researchers’ reasoning processes from the stage of laying out the study’s forestructure (Miles & Huberman, 1994), all the way through to their interpretations and knowledge claims (Thorne, 2016). In Chapters One, Two, and Three, I provided a forestructure outlining what we knew in the area of CR program utilization and what we did not know, as well as my theoretical allegiances, location within the nursing discipline, and my relationship to the ideas. In this chapter I have provided detailed reasons for why I drew on the methodology of interpretive description as my study design. Throughout this chapter I have also provided details about how my inductive analytic process progressed. I have discussed how I used analytic 117 memos that made my reasoning process transparent and allowed for an audit trail that could be followed by readers of my study to assess for adequacy and credibility of my findings. I have also discussed how I held frequent meetings with my supervisor to discuss my reasoning process and to ensure that my interpretations are plausible, useful, and meaningful. Within Chapters Six and Seven of this dissertation, in presenting my findings I illustrate my inductive line of reasoning and the logic behind my interpretations by providing numerous examples of verbatim accounts from the data to support my claims. I have also tried to demonstrate how and why each narrative related to my data was chosen. Throughout, I have drawn on my fieldwork notes and findings from the existing literature to help to support my interpretations. 4.4.4. Representative Credibility. Representative credibility refers to a consistency between claims made and the means through which the phenomenon being studied was sampled (Thorne, 2008). To achieve representative credibility, I drew on different types of data sources such as interviews, field notes, and participant observations. Furthermore, in presenting my findings, I made sure to avoid making inferences from my study that apply to the experiences of all cardiac patients who utilize a CR program. Rather, I acknowledged that my findings reflected the experiences of the participants whom I had sampled. 4.5. Attending to Research Ethics Prior to entering the field to commence my research study, I submitted my research plan to the Research Ethics Boards (REB) of the health authority for the site within which I conducted my study and the University of British Columbia. This process ensured that any involved participants and the institution involved would be protected. For example, drawing on the Tri-Council Policy Statement on Ethical Research Involving Humans (TCPS2), REBs ensured that 118 the values of ‘respect for human dignity’, ‘respect for free and informed consent’, ‘respect for vulnerable persons’, ‘respect for privacy and confidentiality’, ‘respect for justice and inclusiveness’, and ‘balancing of harms and benefits’ would be held and valued within my study proposal (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2010). Once research ethics approval was obtained from the REB, the issue of ‘negotiating informed consent’ with study participants was a priority of my research. This process involved a number of steps. First, drawing on the TCPS2 (2010) guidelines on the consent process, I developed a consent form that encompassed the following elements: (1) information that the participant was being invited to participate in a research project; (2) a statement of the research purpose in a language that would be easily understood by individuals who are not in the medical field and who are not researchers; (3) my identity as the primary researcher within the study, as a previously practicing cardiology nurse, and as a doctoral student. I was explicit that for the purposes of the research study, I was only operating within the role of a doctoral student who was conducting a research project; (4) the identity of the University of British Columbia School of Nursing as the institution that was supporting my doctoral education and my conducting of the study; (5) the identity of the Canadian Institute of Health Research (CIHR) as the financial sponsor for my doctoral program; (6) the expected duration and nature of their participation; (7) that consent was to be given voluntarily, and at any time, as they wished, they could withdraw from the study and can request the withdrawal of their data; 119 (8) the participants were assured that any information, positive or negative, that they may share about their experiences with the HCS would not be disclosed to any agencies. Once the consent form was finalized and approved, each participant who was potentially interested in joining the study was provided with a copy. To ensure that consent was informed, adequate time to digest the information, to bring forward any questions, and to further discuss their participation was required (TCPS2, 2010). To provide the participants with time and privacy in making their decision to join the study, they were given the opportunity to take the consent form home and to return it at their time of convenience. Upon returning the consent form, more opportunity was given to discuss the form, the study, and to answer any questions and/or ambiguities. Obtaining consent from participants was not a one-time event; obtaining consent was a process that was initiated during the first encounter with the participants and it carried throughout the entire research study through ongoing related communication (TCPS 2, 2010). In my study, I routinely checked that the participants continued to be ‘willing’ to participate in the study and I ensured that they remembered their abilities to withdraw from the study at any time. This process occurred at various points of contact with the participants (e.g., during the first interview, during the second interview, and prior to participant observations. In addition to obtaining informed consent, other ethical considerations included protecting the anonymity of study participants (Marshall & Rossman, 2006). The information provided by study participants was kept confidential, including their identity. Data collection and analysis involved the process of assigning an alphanumeric code to each participant data (e.g. SP # 1) and the key to the code was kept in a secure place (i.e., a locked cabinet) away from the actual data set. Data, in the form of transcripts and audio-recordings, were stored in a locked drawer in a secure place at the University of British Columbia. The only individuals who had 120 access to the data were myself and my supervisor. Furthermore, identifying details regarding study participants were not disclosed and were masked. 4.6. Dissemination of Results to the Participants and Agencies In accordance with the social responsibility of intersectionality and the methodology interpretive description to produce knowledge that is transformative and is applicable to practice (Thorne, 2008), I am planning to disseminate my study findings in a number of ways. My goal in these processes is to connect my research findings to practice such that a normative direction for change is developed, where current practice is taken from the ‘is’ to the ‘ought’ (Starzomski & Rodney, 1997, p. 225). During my interviews with many of the participants, I came to learn that they were interested to hear about the findings of this study. I explained to them that they had the right to be informed about the results and that once the study was complete and defended, they would receive a summary of the study findings via hard copies of the thesis or verbal presentations, according to their wishes. Many of the HCPs within the CR program also showed interest in wanting to learn about the findings. Therefore, I am also planning to disseminate the findings of this study to the agency within which I conducted my study. This connection will provide me with the opportunity to connect again with the HCPs of the program and to invite their participation in the decision-making concerning how the knowledge from this study could best be disseminated. Other strategies that I am planning to disseminate the findings include publishing the findings of the study into appropriate peer-reviewed journals. Further, I am planning to present the findings from this study at appropriate clinical, academic, and administrative venues. For example, I am planning to present the findings at staff meetings and nursing, ethics, and cardiac care conferences. 121 4.7. Chapter Summary In this chapter I offered an explanation of interpretive description, the methodology that guided this study. I explained how I negotiated entry into the field, the strategies I took to recruit participants, and how I addressed sampling and data collection. I also discussed how I managed and analyzed data while ensuring that I maintained the credibility of the study. Further, I provided an overview of how I maintained the principles of research ethics in conducting my study. In the next two chapters I will present the results of my study. Consistent with my qualitative methodology and commitment to intersectionality, each chapter of results is grounded in the experiences of the study participants. 122 Chapter Five: Personal Journey 5.1. Introduction: Constructing and Narrating Meanings What I have learned about individuals who live with HD and illness, and their experiences with utilizing a CR program, has been the result of: 1) my encounters with cardiac patients, and at times with their family members, who have participated in this study; (2) my reflections on the contexts which may influence individual experiences; and (3) my conversations with HCPs involved in the delivery of the CR program. In Chapter Four I described how I learned from the cardiac patients who have participated in this study and how I sought meanings from their stories. In this chapter, and the next, I illuminate my interpretations of what I heard, and of what I came to understand. In accordance with the methodology guiding this study, interpretive description, my analytic process was directed by an inquiry into exactly how influences at the individual, HCP, and the HCS levels operate in shaping the experiences of cardiac patients as they access a CR program. Furthermore, my thinking during my data analysis and the narration of the findings was continuously challenged by the question of how interpretations from this study might guide health care professionals to develop individual practices and institutional policies that would be more sensitive to the operating influences, such that cardiac patients would be able to more readily utilize CR programs.32 Furthermore, in keeping with the critical theory of intersectionality, the theoretical perspective informing this study, I have presented the findings of this study from the standpoint of the participants. That is, I have profiled the voices of the study participants by foregrounding the interview data. In an attempt to preserve the voices of the 32 This privileging of the clinical origins and practice consequences of knowledge is a fundamental principle of interpretive description. 123 participants, I have edited their words as little as possible. When applicable, I have presented my fieldnotes as an extension of my interpretations of the participants’ stories to uncover how experiences of cardiac patients engaged in a CR program may be shaped by their personal and the health care organizational contexts. 5.2. My Initial Understanding At the outset of this dissertation, I proposed that the utilization of CR programs by cardiac patients could be viewed as a journey with multiple milestones.33 The journey commences with the referral stage and progresses through the different milestones which include: being notified by the program of first intake appointment; going in for the appointment; continuing with weekly CR sessions; completing and graduating from the program; and independently maintaining what has been learned from the program within the community. This journey can be a first experience for some, or a previously walked path for others. The utilization of a CR program by cardiac patients is complex, involving a myriad of influences; mechanics of referral, physician referral patterns, characteristics of the program, and sociodemographic of the patients, to name a few.34 The aim of this study was to contribute to our appreciation of the complexity by further enhancing our understandings of how each influence may be impacting the experiences of cardiac patients and to thereby enhance the care provided to individuals who need CR. What I have learned from the participants in this study does not contradict my initial understandings; rather, it enriches them. As I examined the responses of the study participants to the interview question “Can you tell me about your experiences with using a CR program?”, I 33 Refer to Figure 1.1: CR Program Utilization Journey, for a diagram of the journey. 34 Refer to Figure 1.2: CR Program Utilization Journey and HCS, HCP, and Patient Level Influences, for a diagram of the complexity of the journey. 124 came to understand that there are two journeys that are concurrently taking place; the prescribed CR program utilization journey and the personal journey of each individual. In Chapters One and Two I began to describe the former as the CR program utilization journey. Through my interviews with the study participants and my fieldwork within the program, I have come to further understand the infrastructure of the delivery of the CR program. Not only are there set milestones within the CR program journey that each individual must undergo, but also, the delivery of the program is very prescriptive. Within each milestone (for example, the intake session), there is a predetermined set of activities that take place. These activities are established by evidence-based guidelines and program-based policies, and are enforced by HCPs. Furthermore, through my interviews with research participants, I came to understand that there is a personal journey that each individual has to navigate concomitantly with their utilization of the prescribed CR program utilization journey. Overall, I have come to understand that the experiences of cardiac patients with the utilization of a CR program cannot be fully understood without also understanding each individual personal journey and how it influences, and is influenced by, their prescribed CR program utilization journey. While the personal journey of each individual participant appears to run concomitantly throughout the entire course of the individual prescribed CR program utilization journey, I have organized my analysis within two layers. The first layer, presented in this chapter, describes the personal journey of the individual and some of its many elements. The second layer, presented in Chapter Six, continues to explicate the elements of the personal journey of individuals and begins to demonstrate its complexity by reflecting on the interplay and reciprocity between the personal and prescribed journeys. 125 5.3. Findings: Personal Journey 5.3.1. The Act of Reminiscing: How Did I Get Here? No single pattern can characterize the experiences of cardiac patients as they access a CR program. Yet despite the particularities of each individual experience, when asked the question “Can you tell me about your experiences with using a CR program?”, the stories of the participants most often began with a reflection of how they got to be where they are; a time in their life where they now have a cardiac diagnosis, or an exacerbation of their previously diagnosed cardiac disease, and require CR care. A number of the study participants reminisced about health behaviours that they believed were the cause of their HD or heart attack. For example, one of the participants reflected on the many years of his life when he ate fast food. “Well, I mean, it’s the reason why I am the size that I am, and have the health problems that I have. The way that I have been eating certainly has not been helping” [SP # 3]. For others, the cause of their HD was believed to be the various stressors that they had been experiencing through the course of their lives. As one woman’s account illustrates: Working long hours, ordering White Spot to take out to feed my kids, and then take them to baseball. You know what my mom would say? “[Says her own name], you are too stretched”. But I love what I did at work, I loved my students. And then I would go home and would be one hundred percent mom. So a hundred, hundred, hundred; trying to give everybody a hundred was too hard. I just then had somebody slam the door on my face [referring to her cardiac arrest]. [SP # 7] In other cases, participants expressed their genetics to be the cause of their cardiac disease. “I have always exercised, eaten well. I don’t know. My dad died from a heart attack at a young age. He had high cholesterol. I have high cholesterol. I guess I have the gene” [SP # 101]. One particular participant believed that her heart attack was ‘meant to be’. “I cannot figure out 126 why this happened. [Long pause] I just don’t know. [Long pause] But you know, everything happens for a reason, so here I am” [SP # 9]. While SP # 9 could not provide an explanation of why she had a heart attack, she believed that her heart attack happened “for a reason”. This reason, from her perspective, was to give her “a new outlook to life, an opportunity to do the things that [she] previously would overlook and not prioritize”. For SP # 9, therefore, her cardiac illness was seen as an opportunity. Despite the variability between each personal account, discussions of how each person believed that they either acquired a new diagnosis of HD or an exacerbation of their previously diagnosed condition stood out in the stories of most participants. For these individuals in my study who were living with cardiac disease and illness, then, there seemed to be an ‘act of reminiscing’ that took place and that appeared to play an important role in their attempt to evaluate their experiences with a CR program. During this reminiscing, some individuals attempted to find meaning for, and/or an answer to, what their cardiac illness was and/or why it happened to them. For others who had cardiac disease for a longer period of time, the act of reminiscing involved them working out the degree to and means by which they had or had not navigated their disease and illness over time. Overall, a key feature of the act of reminiscing was that it seemed to be historically linked. Each individual provided their own personal autobiography of various events, choices, and/or perceived controllable or uncontrollable life circumstances that they believed had contributed to their illness over time. My uptake of the concept of ‘personal autobiography’ in my research findings to describe the activity that took place during the act of reminiscing is somewhat different from Michael Bury’s notion of chronic illness as a “biographical disruption’’ (1982). Bury (1982) suggests that chronic illness is an experience in which there is a recognition of “pain and suffering, possibly 127 even death, which are normally only seen as distant possibilities or the plight of others” (p. 169). In this sense, he conceptualizes chronic illness as a “disruptive event” or a “critical situation” in which the everyday structures of life, as well as its taken-for-granted elements, and the knowledge upon which those elements rest, are significantly disrupted. A key element of Bury’s biographical disruption is the “breaching of common-sense boundaries” where individuals experience a “what is going on here” phase, which he describes as the attention to bodily states that previously were not brought into the consciousness of the individual (1982, p. 169). While the participants in my study appeared to experience this ‘what is going on here’, what appeared to be prominent in most narratives was not a reflection on their bodily states, rather, it was the recognition of, and reflection upon, the history of their life habits and decisions, as they related to their HD. Another key element of Bury’s concept of “biographical disruption” is the disruptions in the explanatory frameworks that are normally utilized by individuals. According to Bury (1982) and other sociologists writing in the area of chronic illness experience (e.g. Charmaz, 1983; Corbin & Strauss, 1987; Hyden, 1997; Williams, 1984, 2000), individuals experiencing chronic illness undertake fundamental metaphysical questions such as ‘why me?’, ‘why now?’ The types of questions that most of the study participants reflected upon during their act of reminiscing did not appear to be primarily metaphysical in nature, rather, they seemed to be more concrete and clinical. Here, I am not arguing that the participants enrolled in this study never engaged in the types of reflection that Bury points to when he describes his concept of ‘biographical disruption’. Rather, because of the nature of the interview question that they were asked, which inquired about their experiences with utilizing a CR program, during the interview the participants reflected mostly on those aspects of their life history that they believed were related to the cause 128 of their HD and therefore their need for a CR program. The narratives obtained from the study participants appeared to allow for the individuals to make sense of their need for a CR program by reflecting on the history of their life practices as related to what they perceived to be the cause of their HD. It is important to note that the act of reminiscing about life events as they related to cardiac disease and illness onset was most evident in participants who were experiencing the realm of HD and illness for the first time. This, however, is not to say that individuals with a long standing diagnosis of HD, or its risk factors, did not also talk about their life and how they believed they developed a cardiac disease. For example, SP # 3 had been living with the diagnosis of HD for ‘twenty plus’ years and he spent the majority of his interview time talking about his struggles with living a healthy life style and how he believed those struggles had led him to have HD. The type of reminiscing SP #3 engaged in, however, was more emphasized in the accounts of the individuals with a new diagnosis. Another aspect of the act of reminiscing which is important to note was that it did not matter where the individuals were on their prescribed CR program utilization journey; such reminiscing, when it did take place, was evident in the stories of participants who were at diverse milestones in their journey. In the participants cited above, for example, while SP # 3 had only attended his initial intake appointment and was waiting for his first exercise session, SP # 7 had already finished her prescribed CR course and only continued to be enrolled in the program because she felt she needed further support. Furthermore, SP # 10 was in the beginning phases where he had only attended four exercise sessions, while SP # 9 was in the middle of the program. 129 The act of reminiscing was less evident for those who had long standing HD or its risk factors. Their stories entailed fewer details of the particularities of the causes of the onset or exacerbation of their HD. Often, their narratives started from the point of evaluating the particular CR program that they were in and how the program had or had not been able to meet their personal needs. One man, who was 72 years of age, was diagnosed with a form of HD in his early thirties and was undergoing the CR program for the second time. He commenced his interview by stating: “boy am I glad that someone is finally looking at this program. When I first saw your pamphlet [held up the blue Letter of Recruitment for this study], I said to my partner, finally” [SP # 1]. This individual immediately began to discuss his experiences with the program the first time he had to go through it: So, [long pause] the first time that I was in the cardiac rehab program, [long pause] at the end of three months, I left in some frustration. One of the things that really surprised me on coming back, was that there had been no changes made. There was no change in equipment, there was no change in the way that the program was carried out, and in fact, with one exception, there was no change in personnel. And you know that is a period of 12 years. And I had views about the way the program was run in 2005. So I was very surprised to see that there were no changes made. Not that I am the person that should be deciding what changes should be. But, umm, I felt strongly then, and I feel reasonably strong now, that there are no changes made [and] yet changes are very badly needed. In SP # 1’s case, his experiences with the CR program did not appear to be positive the first or second time of going through the program. These negative experiences represented much of the substance and duration of his interview. For other participants, such as those with a chronic HD going through the program for the first or second time, positive encounters with the program were recounted. As one participant’s reflection expressed, “I find the program very helpful and everybody should do it” [SP # 2]. 130 In sum, especially for those who had newly arrived to the world of cardiac disease and illness, reflections on how their arrival took place appeared to be an important component of their stories when evaluating their experiences with utilizing a CR program. Health behaviours, various stressors of life, and genetics were some of the influences that were perceived by the participants as being the cause of their cardiac illness. Reflections on the degree to and means by which participants had or had not navigated their illness over time also surfaced in the stories of the participants. For some individuals, particularity those who had been living for a long time with the illness, reflections on their experiences with utilizing a CR program emphasized a personal evaluation of the program. What appeared to be a common pattern amongst all participants in this study, was arriving to and accepting the fact that something had to change. 5.3.2. The Act of Self-Evaluation: What Do I Need to Change? And, Am I Ready to Make the Change? Arriving to an acceptance that ‘something had to change’ featured prominently in the stories of all of the participants. Regardless of whether a participant engaged in the act of reminiscing of how they got to be where they were, when I asked the individuals “How did you decide to use (and in some cases not to use)35 the program?”, all participants talked about the importance of needing to change something. The arrival to the acceptance that there was a needed change involved an evaluation process, where each individual examined some aspect of their current selves that they perceived to be important to their health. As I illustrate below, the 35 As discussed in the ‘Study Sample Characteristics’ (Chapter Four) in this study there were two participants who at some point within the CR program utilization journey had decided to quit a CR program. One participant had quit the same program in which he was enrolled in at the time of the study many years ago and was going through CR for the second time. Another participant had quit a CR program within another facility before she had joined the CR program in which she was enrolled during her interview for this study. 131 stories of the participants in this study suggest that the participants’ identification of the nature of what needed to change can vary substantially across individuals. 220.127.116.11. The Nature of What Needs to Change. For some participants, the nature of what needed to change was guided by learning the facts about and the rules of the new world that they had recently entered; the world of cardiac disease and illness. Some participants, soon after their diagnosis of cardiac disease, went home to learn that the mortality rate for HD is high and that their chance of having another cardiac event is also high. One informant described how he learned about the realities of HD from Google: “I’m lucky that I’m even here. I could have died. I like to go to Google for everything. Sure enough, after I went home from my procedure I looked up coronary syndrome, which is what I have. You wouldn’t believe it. I could have died. I’m walking on thin ice now. It could happen again. This is why I gotta do what I gotta do”. [SP # 17] In addition to learning about the realities of HD, SP # 17 also learned the rules of living with the illness. He came to understand that the outcomes that he was so fearful of, recurrent cardiac events and/or mortality, may be prevented if he would achieve a certain level of cholesterol, blood pressure, and other physiological indicators. This new knowledge about the facts and rules of the disease led SP # 17 to undergo self-evaluation of his previous life style habits and to come to an acceptance of the changes that he had to make. As he stated: “I no longer can eat the way that I used to. I need to get more exercise. I need to quit smoking and drinking. I gotta do this” [SP # 17]. One participant provided an overview of all the steps that he had taken while he was waiting for his first CR session. After reading a patient education booklet that was provided to him upon his discharge from the hospital, he explained that he had learned that these steps were needed in order for him to make the changes that he had to make to prevent himself from having another heart attack: 132 When I got released from the hospital, they gave me this thick red book. Your study sheet [referring to Letter of Recruitment for this study] was also in it. The book was very painful to read because it was huge. But it gave us [referring to himself and his wife] the basics of what I need to do. I have put together this binder [points to his binder that he had brought to the interview with him] with all of my health issues, umm, the blood pressure, the eyes, the heart, all the programs [referring to the diabetic clinic that he also attended], all this stuff is here. Started, umm, [gives a date], when I got back [referring to after being discharged from the hospital], so everything is documented in here and I’m using, umm, the, umm, fitness pal, and the blood monitor on my iPhone too, just as a guide, umm, so we’re putting all of those in and using some of that. I don’t know what the program has in store for us, but we started with this to get going. And umm, so far it has worked really well. We are eating better. My blood pressure is more controlled, although it still needs more work. My blood sugar levels are lower. These are some things that we should have done long time ago, but better to start now than never. Hopefully I don’t end up in the hospital again. [SP # 2] The internet, patient education books, patient teaching done at the bedside or within an outpatient clinic, patient to patient conversations; these were a few of the means through which participants explained that they obtained knowledge about cardiac disease prognosis, and its treatments and prevention. Such knowledge initiated the self-evaluation process for many cardiac patients participating in this study. Furthermore, such knowledge was reflected in the nature of the change(s) that the participants decided to make, such as smoking cessation, weight loss, healthy eating habits, and physical activity, to name a few. Some participants expressed challenges in learning about the facts and rules of living with cardiac disease and illness. Individuals living with other comorbidities, in addition to their cardiac disease, quickly came to understand that the rules of one world may not always be in synchrony with the rules of another world. One man’s description of his experience demonstrates individuals’ perceived complexity when navigating comorbidities: 133 I mean, some of it is a bit confusing for me because I have diabetes. And I don’t, I have always had this point of contention with the healthy heart diet and the diabetic diet. Because I think that they are a little contradictory. Because, umm, I find, umm, like the heart healthy diet, like for breakfast, it likes you to have cereal, the fiber, and fruit. But for me, I’m hungry by ten o’clock and where I do what is more appropriate for the diabetic is I have a piece of toast and egg and I’ll be good till one in the afternoon. I feel better with that food. But, umm, so it’s a little contradictory on that part of it, so it’s a little confusing, but, umm, we are trying, some of that stuff is getting back to square one again and starting all over again. [SP # 4] SP # 2 expressed his need for learning how to manage one disease in relation to another: We [referring to him and his wife] are really needing to figure this whole thing out. The diabetes and heart thing. I understand they go hand in hand. I need to figure out how to control my sugars so that I don’t make my heart worse. Before, I only cared about the sugars. I wasn’t too attentive. I took my meds and as long as I was somewhat under control, things were good. But now I have to take things more seriously. I have to talk to my diabetes people and see what they recommend. For some participants, the decision as to what needed to change was not one that was determined by the individuals themselves through their own self-evaluation process. Rather, the needed change was one that was put forth by their HCP(s). Such instances often took place when the participants required pending cardiac procedures such as a heart valve replacement or a heart transplant. As indicated to them by their HCP(s), in order for the participants of this study to be considered as candidates for the various required procedure(s), they had to achieve a certain level of physiological and physical status. One participant spoke about the “check-list” that he had to fulfill before he would be considered for a valve replacement: Umm, so why am I staying now. I have been told by the [stated the name of the health care team that was looking after him] that the gradient pressure for my heart, whatever that means, was higher than they wanted. So they are considering another procedure where they will put a balloon up to provide space. And in a phone call within the last week, I got the 134 impression that that’s a done deal. But they have given me a check-list of things that I have to do. I have to lose weight [laughs], I have to bring my blood pressure down, I have to be more physical, umm, what is it, they told that I would have to climb some number of stairs [laughs], well, I might not ever be able to do that. [SP # 1] This participant, according his telling, felt disrespect and dis-empowerment by the “check-list” that was provided to him by his HCP: If it was up to me, I would leave the program again [referring to the CR program that he was enrolled in at the time of his interview for this study]. I know that not all people are like us, but my partner and I know cardiac disease. We have been living with it for a long time. I know how to exercise, I know what I need to eat, I know all of this stuff. So when you have a junior doctor tell you what to do, [laughs], it’s like a slap across the face. I feel like I have lost control over my condition, and this is frustrating. I have worked very hard to know my condition and now they are telling me what to do. But I guess I don’t have much choice, do I? If I don’t do this program, then they won’t let me have my procedure. For this participant, what appeared to be causing the experience of “loss of control” and “frustration” was having a HCP dictate the changes that he had to make when he, himself, felt that he already had knowledge about his cardiac disease and its management. Similar negative experiences were apparent in the narratives of another cardiac patient when there were disagreements between the HCP and the patient regarding the particularities of the proposed changes. This participant voiced the frustration that she felt when her HCP raised concerns regarding her current weight and smoking habits. There is a lot that I need done. I need a special defibrillator for my heart failure and a heart transplant. But they won’t let me have anything. I’ve been told that I have to lose over fifty pounds and to quit smoking. They want me to do this program so that I become more active. But don’t they get it? I can’t be more active until my heart feels better. I have chest pain and shortness of breath. They should at least give me my defibrillator. This is so frustrating! [SP # 16] 135 From the perspective of this participant, having to lose weight and quite smoking should not have been a prerequisite for her having to be considered for the special procedures that she required. For this participant, there was a sense of frustration elicited by the mismatch between what she felt needed to be done and the directions of her cardiologist. Yet for some participants, having direction from a HCP for the changes that needed to be made provided a sense of relief and security. One individual talked about the overwhelmed feeling she experienced when she was diagnosed with cardiac disease, and the subsequent relief that she felt when her HCPs laid out for her the steps and changes that she had to take and make: I feel very fortunate for being in the hands of the [hospital] nurses and doctors. Having a heart attack was a huge shock for me and my partner. I remember being very overwhelmed, scared [has tears in her eyes], confused. … I wasn’t sure where to start from. What I had to do. I just remember being scared. The nurses were wonderful. They taught me about heart disease using diagrams and a manikin. They wrote in my journal about all the steps I had to take, you know, the medications that I had to be on, how much, when, the diet that I had to start, and follow-up appointments that I had to have and about this [CR] program. The doctors were awesome too. All the things that they have told me to do makes sense, pretty self-explanatory. But just having someone to lay the steps out for you, makes things more manageable. I feel confident and safer now. I feel fortunate to have the care that I have, what better than the experts! [SP # 5] Knowing and agreeing with what needed to change, and obtaining that knowledge from an “expert”, provided SP# 5 with a sense of empowerment where she felt confident and “safe” that she could face the new world that she had entered. Some of the participants in this study explicitly evaluated their ways of living their life up until their cardiac event. As one participant’s account demonstrates: And also, I think that maybe the business, I have to think a lot. A lot of stress. Sometimes I also feel that there is a lot of stress, with no help, I have to struggle by myself. … A 136 patient like me cannot worry about sometime much more, because it can give you the nervous and upset feeling and it can hurt the heart and that is what happened to me … The other thing I think, maybe some other family issue. Everybody has some family problem. Somebody can maybe release the stress by themselves. Somebody else maybe it takes them a long time to release the stress. So, it’s very complicate. We had to immigrate to come here. It was not easy from the beginning. You know. We immigrated in 2010. Especially the first 2-3 years was quite difficult for us. You know. We had to struggle to make a better living. And here nobody knows you and you don’t know anybody, so. [SP #8] SP # 8 had controllable risk factors for his HD which included being a smoker, having high blood pressure and cholesterol, and being overweight. For this participant, his self-evaluation involved reflections on his ways of being, his life, and how they may have contributed to his heart attack. One woman’s appraisal of how she was living her life prior to her heart attack reveals similar types of evaluations that some of the participants went through. During her interview session, this woman explained that right up until her cardiac event, she had been “juggling” a number of “different balls”. She described some of these balls as “plastic” in material, and if they fell, “that would have been okay”. But she also rationalized why she tried hard to not let them fall, as they were still important to her. However, more significant than the “plastic balls”, were her “glass ones”, these were her “kids and family”. She made it clear that she could not let them drop because they were “precious and fragile”. She emphasized that “finally and unexpectedly the day had come and [her] body said no more” [SP # 7]. She had an acute heart attack, which resulted in her having a cardiac arrest. Consequently, she needed long term coronary care and was unable to be home with her children for the duration of her hospitalization. This experience led SP # 7 to evaluate her ways of living and decide that “enough [was] enough and something had to change”. She expressed that she did not “want to go back to that person anymore”. 137 SP # 7 possessed a heart condition that had genetics as its underlying cause, and in such cases, individuals most often do not have a knowledge of their condition until they have experienced their first cardiac event, after which they undergo a series of diagnostic tests, including genetic testing. What stood out for me when listening to her story was that, although her HCPs had provided her with the knowledge that the underlying cause of her heart attack was one that she was not responsible for, and one that she could not have anticipated or prevented, she believed that her level of responsibilities was the cause of her condition and that her responsibilities ultimately led her “body to say no more”. SP # 7 demonstrated a need for a personal meaning for why she had her heart attack and this meaning had to be one that was tangible; one that would allow for her to point to an actual area in her life that she believed she could make a change to (for example, not taking on too many responsibilities at once). While listening to her story, it appeared as if the ability of SP # 7 to identify aspects of her life that may have been the cause of her heart attack and that she could change provided her with a sense of control over what had happened to her and what might once again take place. This meaning seemed to play a more significant role for her than the medical reasons that she had obtained from her HCPs. The following commentary from SP # 7 illustrates this point: … The doctors are arguing about me eventually needing a heart transplant. They tell me that this could happen again. But I don’t let that get me down. I pull my pants up and do what I gotta do. This is why I come here [referring to the CR program that she attends] week after week. This is what I have to do. In this study, another participant who I had recruited also had genetics as the etiology of her HD; one that she could not have anticipated or prevented. Listening to SP # 11’s story, it can be seen that while she had the knowledge of the real cause of her condition, as provided to her by 138 her cardiologist, she continued to search for and to point to a series of life behaviour practices that could possibly have been the cause of her HD and that she could change: The doctors tell me that I was born with [genetics] that can all over a sudden make my heart beat bad. My sister and daughter also tested for the [genetics], and they have it too. The scary thing is that we can’t do anything to control it. I had a[n] ICD36 put in which will shock my heart when it beats bad. I guess now they have to have one too. The scariest thing is not knowing when it will happen again. They tell me that it could happen anytime. Sure they give medications to control my heart rate, but it could still happen. [pauses, appears to be thinking] I told my husband the other day that we really need to start eating more fiber. I have been told that I don’t have high cholesterol, but we eat a lot of red meat. I read somewhere that too much red meat is bad for your heart. You know what else is bad? Running too much. I like to run in the trail behind our house every early morning. I run about ten kilometers every morning. And the last time I ran is the time that I had my heart stop. I was lucky that I had someone find me in time. The run probably pushed my heart. They say that being a marathon runner is not good for the heart. As with SP # 7, SP # 11’s condition involved a level of unpredictability in that she could have another cardiac arrest at any time. Furthermore, she believed that she could not do anything to control the onset of another arrest. The unpredictability and the inability to control were features of her cardiac diagnosis that appeared to provoke a level of fear in her. As with SP # 7, listening to SP # 11’s story, it can be seen that she too was looking for aspects of her ways of living that could be linked to her HD. She had evaluated, and pointed to, her dietary and exercise habits as some personal practices that she believed she had to change to decrease her cardiac risk factors. Despite her knowing that her genetics were the primary cause of her cardiac arrest, SP #11 chose to focus on other aspects of her being to help her current circumstances; she had chosen to focus on facets of her life that she could ‘control’. 36 An Implantable Cardiac Defibrillator (ICD) is a small electronic device that is inserted into the upper left chest wall to prevent sudden cardiac arrest due to abnormally fast heart rhythms. 139 I am taking up the notion of ‘control’ as Lefcourt’s (1973) concept of ‘perceived control’; an individual’s belief in their ability to escape or to regain freedom. Lefcourt’s original writings on the concept of ‘perceived control’ were based on studies conducted by researchers (e.g., Glass et al., 1971; Glass et al., 1969; Reim et al., 1971) studying responses of humans to urban stresses. In his seminal work, Lefcourt argues that ‘predictability’, having the knowledge of what to expect next, provides humans with a sense of confidence that they have the ability to “act to create desirable effects” (p. 418-419). It is this perceived sense of ‘ability’—that an individual can do something about their given situation—that enables individuals to arrive at what Lefcourt calls ‘perceived control’. What appears to be essential for a sense of control, then, is the presence of ‘predictability’ and the sense of ‘ability’; where the former is the pre-requisite for the latter. It is well established that having a sense of control over one’s own life is an important facet of life satisfaction, emotional health (Taylor, 1983; Thompson & Kyle, 2000; White, 1959), and levels of coping with stressful and traumatic experiences (Janoff-Bulman & Freize, 1983; Lazarus & Folkman, 1991; Taylor, 1983). The Control and Predictability Model of how individuals cope with chronic illness proposes that a key outcome of chronic illness is the sense of helplessness that one can experience (Krantz, 1980). A key feature of chronic illness that can increase an individual’s sense of helplessness and loss of personal control is its unpredictability, as unpredictability can leak uncertainty into every aspect of an individual’s life and may consequently interfere with strategies that are normally taken to establish control over current and future circumstances and events (Hoff et al., 2002; Thompson & Kyle, 2000; Wright et al., 2009; Yoshida, 1997). Patients living with a previously diagnosed cardiac disease can experience unpredictable episodes of exacerbation where disease symptoms and/or disease progression worsens. One participant 140 illuminated this experience as she was describing her long journey with her HD. While she described her cardiac disease as “stable”, she did point to her times of experiencing the “roller coaster rides” where “with the snap of [her] fingers [she] would go from being stable and independent to experiencing extreme shortness of breath and swelling of [her] ankles, leaving [her] unstable and dependent” [SP # 19]. It is this shift between “the dual kingdoms of the well and the sick” (Donelly, 1993, p. 6), where illness moves to the foreground (Paterson, 2001), that makes HD unpredictable and can potentially elicit a sense of loss of perceived personal control over health, and potentially life. The Control and Predictability Model suggests that one way individuals can cope with chronic illness is to regain their individual sense of personal control (Krantz, 1980). The essence of control was present in the stories of the participants when evaluating what needed to change and varied in its forms. For example, participants’ sense of needing to change their diet, exercise habits, or maintaining certain levels of cholesterol or blood pressure levels were ways of them gaining control of the inevitable outcomes of their HD (e.g. mortality and morbidity). Having HCPs determine the course of the management of their HD created a sense of loss of control for some, and a sense of empowerment and security for others. For those who perceived a lack of control over their HD due to its etiology, gaining control was important, and involved pointing to aspects of their life that could be related to causes of HD in general. In summary, all participants of this study indicated that they underwent a ‘self-evaluation’ process that led them to the acceptance that some aspect of themselves had to change. This process was important for the participants in evaluating why they had chosen to attend or not attend a CR program. The nature of what needed to change varied amongst the participants and was guided by their learning about the etiology, prognosis, and treatment of HD, 141 the prescribed orders of HCPs, and/or participants’ self-reflections on the different ways that they had been living that may have led to their HD. ‘Control’ appeared to be an implicit essence in the stories of the participants. 18.104.22.168. Perceptions of Readiness to Make the Change: Am I Ready for This? Evaluating ‘self-readiness’ for making the identified change(s) was also part of the stories of many of the cardiac patients participating in this study. This process involved participants evaluating the complexities of their personal lives. In this section, I will explore some of the facets of such complexities. 22.214.171.124.1. Making Ends Meet. Participants’ evaluations of ‘self-readiness’ for making changes to some aspect of their life—whether to take up a healthier life style or to make changes to their ways of being—and to make the decision to attend a CR program, seemed to be rarely, if ever, extricated from their personal sense of financial security. As one participant stated: “my number one priority right now is to work, to put food on my family’s table, to put a roof over their heads, and to be able to put my kids in after school programs” (SP # 17). The significance of having to work to support the needs of their family was especially highlighted during one interview when a participant and his wife accounted for the many years that they knew they had to live life in a healthier manner and in spite of having this insight, they believed that they did not have the opportunity to make the much needed changes due to the financial demands of “just living”: I mean, yeah, umm, you know, it’s been a lifelong challenge. I mean, umm, umm, the thirty years I’ve worked for as a sales person, and the last twenty on the road, it’s too easy to eat out all the time. I didn’t eat at home for lunch. It’s tough to maintain that. It’s an easy excuse, umm, but you know. … [names his wife] and I always knew that we needed to eat better and exercise more. But when I go back to my life, you have to be very regimented, diligent, and organized with your time to live healthy. And I think that all of us fail. It’s 142 tough. There’s a lot of things that go into every day and your pressures of just living. I didn’t have money then, wondering how you make it, paying all the bills, having kids, it’s a lot of pressure. … But now that I’m retired, I can do it. I have been telling myself that I was allotting six months for myself, just for me to get healthy again, in getting back to diet and exercise and getting the weight off, getting back to a weight that is comfortable for me, and that’s been a life long struggle. [SP #13] The stories from both SP # 17 and # 13 point to one of the many facets of the complexities of participants’ personal lives; one which is rooted in the financial pressures of everyday life. As demonstrated through the stories of both participants, making ends meet was a priority when it competed with the need to attend to their own health. During one of the sessions of my field work at a CR program, I observed a similar concern and decision from an individual participating in the in-take group session. During the session, while the exercise physiologist was discussing the schedule of the program and the level of time commitment required to attend the program, an individual raised his hand and in a very frustrated voice raised his concerns. He stated, “I can’t afford to miss any more work-time. I already missed three days of work because I was hospitalized. I have bills to pay”. Then half way through the introduction session the gentleman got up and left. Because he did not participate in this study, I was unable to conduct an interview with him. However, after talking to one of the members of the CR program staff, I learned that he never enrolled into the program. Although this gentleman did not discuss financial responsibilities for his family, he did raise a similar concern for needing to work to meet the demands of life, which in his case entailed paying the bills. The impact of having to work to meet the financial needs of life had different impacts on CR utilization for different participants. During times of perceived financial hardship, SP # 13 was unable to take part in a CR program. SP # 17 had decided to take a “leap of faith” and to try 143 to make some changes in his life. He believed that his enrollment into a CR program would be his “first best step” towards making such changes. However, he did point out that if he felt “overly overwhelmed” with having to attend to both the CR sessions and his work schedule, he would have to stop his enrollment in the program: … But I’m not saying that I don’t want to try. I definitely want to be healthier. And I’ll do my best. I guess I’ll just take a leap of faith and hope for the best. I think that this program will be my first best step. Hopefully I’ll be able to manage everything. But as soon as I feel overly overwhelmed, I will have to drop out [referring to dropping out of the CR program that he was enrolled in at the time of his interview for this study]. [SP # 17] 126.96.36.199.2 Attending to Family Responsibilities. Decisions of ‘self-readiness’ to make the identified health related changes were often shaped by intersecting familial structures and responsibilities. One complexity that surfaced in the stories of some of the study participants was the everyday responsibility of having to care for other family members, including their children, spouse, and/or parents. As one woman explained: My new goal in life is self-care. I am going to make the effort of giving myself fifteen minutes a day to take a shower, I’m going to exercise, I’m going to stop eating my kids’ left overs and start making a plate of lunch that is meant for me. This is going to be challenging, and I know it. My husband is often not there to help me. He works full time. We have three children. My three older ones go to school all day and my younger one stays home with me. I don’t know where time goes. In the morning, I get everyone ready, fed, and packed for school and work. By the time I drop my two older ones at school, do groceries, make a meal for dinner, do the laundry, nap my little one, it’s time to go pick them [referring to her two school-aged children] up again. Then I have to drive around town. One has baseball, the other has piano. It’s never ending. [Laughs] Once everyone is fed, bathed, and in bed, I’ve fallen asleep on the couch. [Laughs] You see; it can be challenging to squeeze that time for myself into my day. [SP # 12] 144 During my interview session with SP # 12, she was clear that she was excited about making changes that were aimed at caring for herself. However, as she laid out all of the responsibilities that she had for the everyday care of her young family, she pointed to the challenge of having time to herself. In her interview she pointed to the absence of her husband as a source of help. When I further explored the possibility of other options for help, her response was as follows: Yeah, [my husband], he’s not around much. It’s all on me. I mean, I’m lucky that I don’t have to work. But that’s all I get [laughs]. In my culture the women stay home and cook and clean and stay with the kids. The men work hard outside. It’s bad for the husband to do housework or to stay home with the kids. We don’t have the money to hire the extra help. I do live close to my brother and his wife, but I don’t think that they understand the extend of my condition. I don’t think that anybody does. I mean, I’m not bedridden. Maybe if I was, then people would help more [laughs]. I still get up every morning and go on with everything. I don’t think that anybody realizes that sometimes I have bad days. Or that I need to care for myself so that my condition doesn’t get worse. SP # 12’s response points to intersecting challenges that influenced her ability to be confident that she would and could make the necessary changes to better her health. She has pointed to the structure of her family layout and the ways in which the different responsibilities were assigned to each adult within that structure. In her household, SP # 12 was responsible for taking care of her husband and three children by carrying out the household chores and overseeing the daily activities of the children. In contrast, her husband was responsible for providing for the family financially by working outside of the home. As perceived by SP # 12, her role and responsibilities within her household made it challenging for her to make the time to care for herself. Her circumstances were further influenced by what she identified as her culture. It appears that the family structure, and assigned roles within that structure, were dictated by her culture. Through her telling, I got the sense that the modification of the family roles, where her husband would participate in the household chores such that SP # 12 would be able to take 145 breaks and attend to her health were perceived as “bad”. Intersecting her responsibilities and culture, was her perceived economic status. As she had indicated, they did not have the financial means of hiring “the extra help”. Lastly, the lack of visibility of her cardiac illness, where she was not “bedridden”, made it more challenging for her to receive the help that she needed from others. Different forms of help become more readily legitimized when individuals possess visible signs and symptoms of their chronic illness (Thorne, 1993). A similar story to SP # 12’s was shared by SP # 5: Before becoming a mother, I always thought that I would be the one to raise my kids. I wanted to be there for their first solids, first crawling, first words … I never imagined that I would put my kids into daycare or get a nanny. This was an agreement between me and my husband. He would do the outside job and I would be the woman of the house. And here I am now. We had to get a nanny to help with housework and with watching [names her daughter]. I can’t take more than ten steps before getting short of breath, let alone to cook, to do laundry, and to play with [names her daughter]. [starts to cry] [ long pause]. I can no longer be a mother or a wife. My husband keeps on telling me that this is just temporary. That I will get better and stronger. That I need to concentrate on my health and my recovery. But I can’t feel anything but guilt. SP # 5 experienced challenges when evaluating her readiness to make changes to her life that would better her health. Such challenges were elicited by her commitment to caring for her child and husband. For this participant, guilt due to her inability to care for her family—a longstanding decision that she wished to uphold but could not—was a challenge. In summary, key concerns were raised by participants when evaluating ‘self-readiness’ to make the health related changes they identified as necessary. In addition to expressing concerns about being able to financially navigate the pressures of everyday living (e.g., paying the bills and putting children into afterschool programs), participants also experienced challenges with 146 navigating their familial roles and responsibilities in an attempt to find time to attend to their own health. 5.4. Chapter Summary In this chapter, I described the personal journeys that the cardiac patients participating in this study experienced. I have begun to point to some of their elements and their complexities. I learned that for many cardiac patients, especially for those who were experiencing the realm of cardiac disease for the first time, their experiences with utilizing a CR program entailed making sense of why they needed the program. For many, this was achieved by engaging in an ‘act of reminiscing’, a detailed self-reflection of the various aspects of their life history that they believed were related to the onset or exacerbation of their HD. Within my interpretations of the act of reminiscing I differentiated my uptake of the notion of ‘personal autobiography’ from Michael Bury’s notion of chronic illness as a ‘biographical disruption’. I argued that the substance of the experiences of ‘what is going on here’ that was present within the narratives of the participants in this study was related to the various events, choices, and/or perceived controllable or uncontrollable life circumstances that were believed to have contributed to individuals’ HD. Within Bury’s concept of ‘biographical disruption’, the essence of ‘what is going on here’ was in relation to changes in bodily states as a consequence of the onset of an illness. In this study I further learned that cardiac patients’ attempts to make sense of why they had chosen (or in some cases not chosen) to utilize a CR program involved an ‘act of self-evaluation’, where the study participants pointed to different aspects of themselves (e.g. ways of being or health behaviour practices) that they believed they needed to change. I have discussed some of the complexities involved in the decision as to what ought to change and whether an 147 individual felt ready to make the targeted change. For some, this act of self-evaluation was one that took place independent of their HCPs. For others, this act of self-evaluation involved an engagement between the patient and their HCP where feelings of frustration, relief and security surfaced. ‘Control’ surfaced as an implicit essence in the stories of many participants. Drawing on (1) Lefcourt’s concept of ‘perceived control’; (2) the Control and Predictability Model of how individuals cope with chronic illness; and (3) the unpredictability and shifting nature (between the ‘well’ and the ‘sick’) of chronic disease, I argued that many of the experiences of the cardiac patients in this study were consistent with these models. The participants pointed to various aspects of their life practices, as they related to their heart health (e.g., healthy eating, exercising, stress management) as means of obtaining ‘control’ over the progression and the inevitable outcomes of their HD. Perceptions of presence of control, or its absence, also emerged in the stories of the participants when they discussed HCPs’ involvement in making decisions as to what needed to change. In this study, I also learned that in the context of knowing that something had to change, not all individuals had the capacity to make the change. Despite knowing that participation within a CR program was an optimal first step towards recovery, the ability of individuals to participate in the program was influenced by many factors in their personal lives. I learned that a person’s decision and ability as to whether they utilize a CR program cannot be understood as a decision that individuals undertake by themselves in isolation from their social and personal contexts. The presence or absence of capacity is influenced by intersectional factors, including personal and cultural values and beliefs, financial security, the structures and rules of a family, and the responsibilities that an individual has within those structures. In the chapter that follows, I continue to explore the personal journey in the context of discussing the prescribed CR 148 program utilization journey and its many elements, demonstrating the reciprocity between the two journeys. 149 Chapter Six: The Personal and Prescribed Journeys of Cardiac Rehabilitation—Interplay and Reciprocity 6.1. Introduction In Chapters One and Two I provided an empirical review that pointed to various factors operating at the HCS, HCP, and patient levels as influences that impact cardiac patients’ experiences utilizing a CR program. This empirical review indicated that influences operate across the different milestones of the CR program utilization journey. In Chapter Five, I argued that in order to understand the experiences of cardiac patients who are utilizing a CR program, including how influences operating at various levels impact experiences, we ought to understand the personal journey that each individual has to navigate concomitantly with their utilization of their prescribed CR program. In Chapter Five, I therefore also explored some of the elements of the personal journey of the individual. The intent in this chapter is to capture the various elements of diverse personal journeys by also exploring how they act in interplay with the elements of the prescribed CR program journey. In this chapter the findings are presented in the order by which the milestones of the prescribed CR program utilization journey unfold (i.e. from referral to completion). 6.2. Finding a Way to Get into the Program In Chapters One and Two of this dissertation, I introduced the milestones ‘referral’ and ‘enrollment’ as the first steps of the prescribed CR program utilization journey. Currently, and at the time of data collection for this study (2017 – 2019), within each Health Authority in British Columbia, there are organizational structures in place that have been developed and implemented to ensure the optimization of the referral and enrollment of all cardiac patients into a CR program. As I have explained in Chapters One and Two, these organizational structures are in the form of referral processes and engines, and standards of practice for referring providers. 150 Participants in my research described the complexity of their experiences with navigating ways to obtain a referral to a CR program and also to become enrolled into a CR program. Participants’ accounts emphasized that they often had to struggle to find their way through the HCS. It was evident in many instances that multiple, complex, and intersecting influences were operating at both the organizational and individual levels. Such influences frequently impacted each participant’s capacity to become part of a CR program. 6.2.1. Moving Between Health Authorities—Obtaining a Referral for and Enrolling into a Program People living with cardiac disease often require continuous and complex care that usually takes place within multiple health care settings, including inpatient and outpatient facilities, and can involve different hospitals and different Health Authorities.37 Challenges with obtaining a referral for a CR program when individuals had to cross district Health Authority boundaries between the sites of their inpatient cardiac care and outpatient CR care were discussed by some participants. For example, the conversation I have recounted below between one participant, his wife and myself on their experiences with obtaining a referral for a CR program illuminated the complexity and vulnerability that they, and others, experience as they transition between different services: NA:38 So this is the first time that you have ever been referred to a cardiac rehabilitation program? SP # 13 and Wife: Both nodded yes. 37 The province of British Columbia has five regional Health Authorities. These include: Fraser Health Authority (FHA), Interior Health Authority (IHA), Northern Health Authority (NHA), Vancouver Island Health Authority (VIHA), and Vancouver Coastal Health Authority (VCHA). These organizations are responsible for the delivery of health care services to meet the health needs of the populations within their respective geographic regions. 38 NA: The initials of the interviewer. 151 NA: So what do you think happened then? The first time that you were diagnosed with heart disease. Why do you think that you were never referred? Wife: I don’t, I don’t, well… SP # 13: Like after the stents you mean? NA: Yes. SP # 13: I don’t know. I just went back to work three days later. Wife: I don’t think, I don’t, like I know that the stent that we had done here, that was in 2000, they did say that you know, you need follow up with a cardiac rehab doctor, and we did say well we live in [district name]. Yeah, so then, we just kind of, I don’t know why we didn’t do it. SP # 13: Well, they did mention it, but it wasn’t a formal referral. It was just them saying that we needed to go, and we just never did. Wife: Laughs. NA: It’s not that you never did go. You can’t just walk into a cardiac rehabilitation program. Somebody has to refer you. So who referred you this time? You mentioned it was your GP [general practitioner] is that correct? Wife: Laughs. Well, we requested him to refer us. Because, because, they had said, here [referring to the hospital from which SP # 13 was discharged], that we needed to follow up with a cardiac rehab. NA: So the hospital did tell you? And then did they tell you how to get a referral? Wife: Well, we filled out the forms online, [laughs], then took them to the GP. NA: Did the Health Care team looking after you during your hospitalization guide you with that process? Did they tell you where to go online, what to look for, what to print, and who to take it to? Wife: Laughs, no. NA: Would you be able to tell me about your story of how you managed to get into a CR program? I would love to learn from you about how this process works and unfolds. SP # 13: Sure. They [referring to the HC team that looked after him during his hospitalization] said that you need to make an appointment with your GP right away, as soon as you leave here. So which we did. And they said that you should get into the cardiac rehab program in [names the district of his home residence]. So when we went to go to talk 152 to our GP, he said that you need to fill out the papers, and of course he was pissed off because he didn’t want to do the paper work. NA: So what do you think would have happened if you, yourselves, did not take the initiative of filling out the referral form for your GP? SP # 13: We wouldn’t be here talking to you right now? We had to initiate the conversation with our GP. We always do. He’s been our GP for some time now. I don’t think that he would have ever thought about referring us. [Wife laughs]. Him and I don’t get along very much. [Wife laughs]. Well, I don’t want to throw anybody under the bus or anything. Wife: The GP, unless you like go in there and ask for something, and they either give it to you or they refer you to somebody else that would give it to you. That’s the whole relationship with the GP. SP # 13: I have a really hard time with him [referring to his GP]. It’s like “why do I even need you? If you are always asking me what do I think? I do not need you. You need to tell me. I’m coming to you. I don’t come that often”. So, I lose a lot of respect for that. But you still have to go to them to get things done. So I see Dr. [Cardiologist] more often. So, the onus is on the patient. We are here today. But it was a little bit of a struggle to get here because of that whole referral thing. I mean nothing too serious. We did get in. But if we had not done all the work for the system, we wouldn’t have been here. Wife: Yes, a lot of it was self-directed. The rest of it was okay. She [the CR program receptionist] phoned right away. It was a matter of him [the GP] getting his paper work in, which he did, and then we just had a phone call saying “Monday is the first day”, which we went, it was 1.5 hours, and there is follow up sessions. I missed the Monday session, but it cycles, so you don’t miss anything. I have included this full interview excerpt in order to further explore some of the complexities that a person living with cardiac disease may encounter as they are finding their way to get into a CR program. Like SP # 13, many other participants expressed that they have also experienced challenges with finding a way to get into a CR program. I have chosen to profile this particular example because in telling their stories about their first and second experiences with accessing a CR program, SP # 13 and his wife especially clearly demonstrate 153 how elements of their personal journey can intersect with elements of the prescribed CR program utilization journey. Further, SP # 13’s scenario is an example of a person getting lost within the system as they are transitioning between two different HC services (the cardiac inpatient services and the outpatient CR program) and two different Health Authorities (one within which he was hospitalized, the other where he was attending a CR program). Due to the nature of my data collection, where I only recruited participants from one hospital site, I was unable to obtain a great deal of variety in experiences of participants who had to travel between different hospitals and Health Authorities. SP # 13 is one of three participants who were able to speak to the uniqueness of their experiences across different hospitals and Health Authorities. The narratives of these three individuals point to challenges that ought to be considered for practice and for future research, which I will be discussing in more detail in the closing chapter of this dissertation. The challenges that SP # 13 and others have experienced were in part shaped by one of the standard rules of the prescribed CR program utilization journey. One of the key features of the prescribed CR program utilization journey is that a cardiac patient needs to obtain a referral from a HCP prior to being able to enroll into a program. During my conversations with HCPs in the CR program where I conducted my fieldwork, I learned that the referral processes for that particular institution involved an automatic electronic referral system, through which patients who are discharged from the hospital with a cardiac diagnosis get a referral to a CR program that is meant to be within their ‘catchment’ district. This referral system, however, is not synchronized with all CR programs across the province of British Columbia. That is, only those individuals whose home residence is within the catchment area of certain CR programs would get an automatic referral upon their discharge from this particular hospital. Others, like SP # 13, 154 whose home residence is outside of the catchment of the designated CR programs, would have to be self-directed in obtaining their own referral from their HCP (e.g. general practitioners or general community cardiologists). SP # 13, therefore, was situated in a vulnerable circumstance by the fact that: (1) the hospital close to his home residence did not provide the specialized cardiac care that he needed, and therefore, he had to receive care in a Health Authority distant from his home residence; and (2) the referral system from the hospital that he was discharged from did not make referrals to CR programs that were within his catchment area. Overall, SP # 13’s story indicates that cardiac patients in similar circumstances can further become vulnerable to getting lost within the system and not being able to access a CR program. Two decades ago, “the [financial] pressures of just living” led this individual to go back to work immediately after being discharged from the same hospital. In the absence of a direct referral to a CR program and in the presence of perceived financial instability, SP # 13 did not successfully transition from the inpatient cardiac services to the outpatient CR program. SP # 13’s second encounter with the HCS unfolded in a partially different manner. While he still had to navigate the challenges of finding his way through the system, being in a place where he felt he was financially stable allowed him to actively take different steps to obtain a referral and, therefore, to get into a CR program. SP # 13’s current experiences of obtaining a referral were further shaped by: the intersections of: (1) his perceived socioeconomic status; (2) his relationship with his general practitioner; (3) his perception of the ‘unwillingness’ of the general practitioner to be proactive at making a patient referral for CR program; and (4) his ability to navigate the system (e.g., have knowledge of and access to the internet to download and print a referral form). 155 The story recounted by SP # 11 highlights other challenges and levels of vulnerability people can experience as they try to enroll into a CR program: … I was hoping that at that point I would have already started the cardiac rehab program. … I didn’t hear anything until the end of April 2017 [she was referred to the CR program in October 2016]. So I contacted them [the CR program located in the city of her home residence in the North of Canada]. And they said that there was a long wait list. First they said that they had misplaced my papers. Then they said that they didn’t get what they needed, and then they said that they found it. And then they said that “we are shutting down for the summer, and that we won’t start up again until the fall”. They did call me at the end of August 2017, and then they let me go in for an intake [interview]. So I did and I met with the rehab cardiologist in [city of her home residence]. And she had some red flags about my particular heart condition and her ability to manage it. So they do not have a crash cart or telemetry at our rehab in [city of her home residence]. The rehab program there is just run through the YMCA and my heart condition that I have, and its arrhythmia, they have never had to deal with it before. So she didn’t want to [get] any of their regular testing done. She wanted to get more information. So I gave her some consent to talk to Dr. … and Dr. … [names her cardiologists whose practices are located within a major Urban Center, over 700 kilometers away from her home residence]. I have two different cardiologists … because I have a valve issue and an arrhythmia issue. So that was August. … And then there was a lapse of time from September all the way till December, … But then in December she [the rehab cardiologist in the city of her home residence] contacted me again, and she said that she had been talking to [names the doctor in the major Urban Center], who is the electro physiologist here, and they thought that it was better for me to come to [names the major Urban Center], to at least start the program and then we could transition into their program [the program in the city of her home residence]. … So if it wasn’t for coming here, I would not be doing the program at all. … I’m part of a heart group online, and that is sort of the feedback that I have gotten from people who are up North, [names different cities in the North of Canada], that they don’t have any Cardiac Rehab program near them that would have all of the equipment and specialized care, the way that [names the CR program located in the major Urban Center] does. 156 SP # 11’s narrative points to other intersecting challenges that cardiac patients requiring CR care can experience when they have to navigate different Health Authorities and geographic regions. In addition to having to be self-directed and active in ensuring that her referral paper work had reached the hands of the CR program and that she had obtained an intake appointment, SP # 11 also faced other obstacles. The acuity of her HD, which meant that she required a CR program that would provide specialized monitoring and CR personnel, and the lack of such programs within the city of her home residence, situated her in a vulnerable place. SP # 11 had to miss the opportunity of receiving CR—a potentially life saving program—for long periods of time. She had to await the process of having her patient information shared and moved back and forth between the different HCPs practicing within the different organizations. She also had to navigate the challenges of obtaining a referral for and acceptance of an appropriate CR program that could meet the specialized needs of her specific cardiac disease. 6.2.2. Staying Within the Same Health Authority—Obtaining a Referral for and Enrolling into a Program Participants who stayed within the same Health Authority and region for all of their cardiac care (both inpatient cardiac care and outpatient CR program) also experienced difficulties with gaining initial access to the program. SP # 2’s story is an example of such circumstances: When I was being discharged from the hospital after my open heart surgery, the nurses told me that I would be getting a referral to a cardiac rehabilitation program. They told me that I would need the program to help me to get back on my feet again. When I went home, I waited. I waited and waited. I think that months went by, but nobody called me. So I decided to call [the program] myself. They told me that they never got papers for me. You could imagine how frustrated I was. I had to go to my cardiologist and get her to refer me. If I had not taken measures into my own hands, I would still not be in the program. The perception of needing to take measures into their own hands to find a way to get into the program was a common experience among many participants. However, in spite of such 157 challenges, and at times feelings of “frustration”, the persistence of the cardiac patients I spoke with in being self-directive in obtaining a referral and ensuring their enrollment into a program is noteworthy. During my time of recruiting study participants, I directly encountered a significant level of engagement of some patients in actively and independently attempting to find their way into a CR program. I had six different phone calls from cardiac patients who had recently been discharged from the hospital. The individuals had contacted me with the motivation of wanting to make an appointment with a CR program. What appeared to have happened is that the patients had come across the Letter of Recruitment for the Study, and they thought that I was the contact person for the intake bookings of the program. Many voiced their frustrations with having to wait for so long to hear from the program or not knowing who to call or where to go.39 As the participant accounts [SP # 13, # 11, and # 2] I have cited above indicate, having dedicated referral processes, engines, and standards of practice in cardiac care does not necessarily ensure that all cardiac patients will be referred to and/or enrolled into a CR program. In my research, the stories of the various participants have pointed to the intersecting challenges that cardiac patients can experience in circumstances in which they have been referred to a CR program, or they have been notified that they require CR care. However, I was unable to recruit participants who had never obtained a CR referral; and/or who did not have knowledge of their need for CR care; and/or who were possibly positioned in circumstances where they were unable to pursue obtaining a referral. In other words, I was unable to explore a full array of CR related experiences. Further, my interview with one study participant 39 In Chapter Four of this dissertation I discussed the approach that I took to re-direct these individuals. 158 highlighted the existence of diverse sub-populations of cardiac patients who do not routinely receive a referral for or teaching on CR care and yet could benefit from such support: Yeah, I should tell you, I have hemophilia. I have spent my life with programs where the medical community needs education to know the basics about hemophilia. [Laughs]. I actually go to information sessions designed for the medical team and provide them with information on hemophilia. And it’s not the same here [referring to the case of cardiac disease]. But it’s the same problem. That the medical community itself is not using this facility for patients. I’m not sure what is happening. But I think that many of the health care providers, family doctors, do not even know about CR. My partner and I are lucky that we know so much and we can fight for what we need. We are at an age where we now know a lot of people with heart disease. [Laughs]. And when I tell them [referring to the people who they know with HD] that I go to CR, their jaws drop. They envy me because they wish that they could be involved in the program. But they never get sent by their doctors. I feel lucky. For one thing, I know a lot about my condition. I know what I need, and I know where to go. [SP # 1] SP # 1’s interview excerpt points to other intersecting influences that shape the utilization of CR care by cardiac patients: (1) the knowledge of the individual cardiac patient; and (2) the referral practices of HCPs. Using the example of his expertise regarding his condition of hemophilia, SP # 1 demonstrated the power of knowledge of their own condition in persons living with cardiac disease. SP # 1 pointed to how the health care system positions individuals into circumstances where they have to be autonomous for their own care; to the extent that often patients have to be responsible for the tasks, such as obtaining a referral, that are normally taken up by HCPs. The second influence that SP # 1 has pointed to, the referral practices of HCPs, has also surfaced in the literature (outlined in Chapters One and Two). In summary, from the accounts of the study participants, it is evident that cardiac patients’ engagement with the milestones of ‘referral’ and ‘enrollment’ can be a challenging experience for individuals. Intersecting structures at the HCS level led some participants to 159 experience the vulnerability of being lost within the HCS. One of these structures included an inequity in the delivery of highly specialized cardiac inpatient care and outpatient CR care across various geographic locations of the province. Another influence at the HCS level included lack of harmonized institutional CR program referral strategies, where all CR programs across all geographic locations of the province are accounted for within the automatic referral engines. In the contexts of such challenges, concomitant challenges within the personal journey of cardiac patients’ lives (e.g., experiences of financial hardship) can further lead individuals to become vulnerable. At times, cardiac patients may not find their way into their prescribed CR program utilization journey (e.g., SP # 13’s first encounter with the HCS and CR system). Referral practices of HCPs also surfaced in the narratives of the participants as being another contributing factor to the challenges they had to overcome to find a way to get into a CR program. Patients’ perception of HCPs’ ‘unwillingness’ to make referrals to CR program or HCPs’ lack of knowledge regarding CR programs, were some of the influences that were discussed by the participants. Regardless of what intersecting structures led participants to be lost within the HCS, individuals in this study demonstrated a need to be self-directive in finding their way back through the system. Such processes included attempting different strategies (e.g., making phone calls and/or physically obtaining a referral form and getting a prescriber signature). Analyses of previous empirical data pointing to influences at various levels (patient, HCP, HCS) that can impact utilization of CR programs by cardiac patients confirms the complexity of the experiences of the participants in this study. To the best of my knowledge, the pool of research related to CR program underutilization such as the research I explored in Chapters One and Two, has not discussed the challenges that can emerge when an individual has 160 to move across different Health Authorities when transitioning between their inpatient and outpatient cardiac care. However, the inability to obtain a formal referral has been found by many studies to be associated with CR program underutilization (Field et al., 2018; Gallagher et al., 2015; Grace et al., 2011). Furthermore, HCP factors such as lack of physician recommendations for and lack of referral by community non-specialist physicians to a CR program have also emerged in the available empirical data as being correlated with CR program underutilization (Ghisi et al., 2013). 6.3. Making this Work Once cardiac patients have obtained a referral for a CR program and have attended their first orientation session, the next milestone within their prescribed CR program utilization journey involves their weekly attendance at exercise and information sessions. During my fieldwork, I came to appreciate the standardization of the delivery of the program; that is, the sessions are delivered on certain days and hours of the week, and the activities that take place during the sessions are preset and routinized. CR participants are told to select one of the time slots and to register for twice weekly classes with the program receptionist. Each session is one hour and fifteen minutes, and they take place either on a Monday and a Wednesday (from 7:00 am to 4:14 pm) or on a Tuesday and a Thursday (from 8:00 am to 6:30 pm). Through an education pamphlet, the participants are told that in order for the program to be effective, they (referring to the cardiac patients) ought to be committed to the program. The pamphlet states: “Commit to yourself. Commit to a time”. The pamphlet describes the program’s hours of operation, its equipment and changing rooms, and its cost of $100.00 per month, after which it states: “Congratulations on making the commitment to your health and well being!” 161 No single pattern can characterize the experiences of cardiac patients as they committed to their health by commencing the highly structured CR program and attending their weekly CR exercise and information sessions. The act of attending weekly sessions appeared to be challenging for most participants, with some finding the barriers that they had to overcome more difficult than others. Participants often had to navigate different barriers along various parameters, and it was within these parameters that they appeared to experience challenges with utilizing a CR program and ‘making it work’. 6.3.1. Working to Manage the Symptoms of Cardiac Disease Among the many possible impacts of cardiac disease, there are several that cause a burden to the individual cardiac patient living with the illness. HD has significant impacts on individuals living with the illness, including needing assistance with their activities of daily living and the development of depression and anxiety (Canadian Cardiovascular Society, 2003; PHA, 2009; Rutledge et al., 2013; Yohannes et al., 2010). Many participants in this study referred to the degree to which the symptoms of their cardiac disease impacted their ability to utilize a CR program. The presence of an exacerbation of cardiac disease symptom(s) created challenges for the participants in being able to participate in their weekly CR sessions: … For the most part, I like going to the program. It’s a good program, and I think that everyone should do it. But [laughs] there are days that I need to be dragged to go. Some days I feel extremely tired and I have aches and pain everywhere, like someone has beaten me. It is on those days that I just don’t want to go. Those days do come around quite often. [Laughs] And I have missed some sessions. But if my daughter finds out, she will make me go. She will physically come to my house and drag me out of bed, and take me. [SP # 9] Living with a chronic illness like cardiac disease can bring with it some good days and some bad days (Charmaz, 1991). For some participants, during bad days, where they ex
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UBC Theses and Dissertations
Shining light on the complexity of cardiac rehabilitation utilization by patients with heart disease Adhami, Nassim 2020
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