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Beckoning the heart: a guided autobiographical approach to understanding women’s recovery following myocardial… Bowers, Michele Janice 2004

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BECKONING THE HEART: A GUIDED AUTOBIOGRAPHICAL APPROACH TO UNDERSTANDING WOMEN'S RECOVERY FOLLOWING MYOCARDIAL INFARCTION by i MICHELE JANICE BOWERS BA., York University, 1991 M.A., University of British Columbia, 1996 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES Department of Educational & Counselling Psychology and Special Education We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA July 2004 © Michele Janice Bowers, 2004 II Abstract As cardiac research specific to women slowly emerges from the field, there is increasing evidence that women's experiences following myocardial infarction are different from men's (Boogard, 1985) and that younger women may be faced with different developmental challenges compared to their older female counterparts (LaCharity, 1997, 1999). This study explored how women constructed their experience of recovery following a myocardial infarction (Ml). Action research using Guided Autobiography (GA) provided the methodology for addressing the research question: How do women under the age of 55 years, construct their experience of recovery following myocardial infarction? Guided autobiography was utilized as the research tool or method for gathering the research data. Five women, between 48 and 53 years of age, who experienced Ml within the past 3 years, voluntarily participated in a 7-week GA group with other female cardiac patients where they engaged in a weekly reflection and writing practice. Six autobiographical themes were used to guide participant's written accounts. A follow-up session was conducted approximately 8 weeks following the completion of the group to address issues of research validity. Data sources in this study primarily comprised of participant's autobiographies, audio and videotapes of the research sessions and the researcher's field notes. Research sessions were transcribed verbatim and analyzed according to Berg's (1995) method of content analysis. Six common themes emerged across research sessions including a) the experience of loss, b) living with uncertainty, c) changes in self-concept, d) personal needs and self-care, e) care and support, and f) taking care of others. Study findings contribute to the growing body of literature specifically dedicated to exploring women's experiences of Ml and recovery. Findings also demonstrate the value of utilizing Guided Autobiography as a clinical intervention to facilitate emotional recovery in women following a significant cardiac event such as Ml. Other implications for health-care providers are discussed. iii TABLE OF CONTENTS ABSTRACT ii Table of Contents "j Acknowledgements v i Poem v i i CHAPTER 1: INTRODUCTION Introduction 1 Research Question 2 The Bridge between Counselling Psychology and Medicine 2 Personal Perspective on Women's Cardiac Recovery 3 The Organization of the Dissertation 5 CHAPTER 2: LITERATURE REVIEW Introduction 7 A Brief History of the Development of Women's Health Care 7 The Foundational Work of the Women's Health Megamovement 7 Key Issues in the Health Movement 8 Summary 11 Current Status of Women's Inclusion in NIH Research 12 Women's Health in Canada 12 The Exclusion of Women from Cardiac Research 13 Myocardial Infarction 15 Women and Myocardial Infarction 15 Age of Onset and Incidence 15 Risk Factors 16 Symptom Presentation and Diagnosis 17 Help Seeking Behavior 18 Impact of Ml 19 Social Support 22 Cardiac Rehabilitation 22 Women and Recovery - Qualitative Research Review 23 Summary of Literature 35 CHAPTER 3: METHOD Research Design 36 Action Research 36 Procedures 38 Criteria for Study Inclusion 38 Participant Recruitment 39 Participants 4 0 Description of Participants 41 Guided Autobiography 43 Revised Guided Autobiographical Themes 4 4 Data Sources 4 5 Format of Conducting the Guided Autobiography Group 4 6 Data Analysis 49 Review of Initial Interviews 49 Content Analysis 49 Videotaped Analysis 50 Participant Review 51 Field Notes and Research Journal 51 Establishing Trustworthiness 52 CHAPTER 4: RESULTS Introductory Session 56 The Unfolding of the Introductory 57 Group Guidelines 59 Women's Tellings of Their Ml Experience 59 Researcher's Process 71 Researcher's Interpretations of Introductory Session 72 GA Theme 1: Your Health and Experience of Ml and Recovery 75 Researcher's Process 93 Researcher's Interpretations of Theme 1 94 GA Theme 2: Your Major Life Work and Recovery from Ml 97 Researcher's Process 110 Researcher's Interpretations of Theme 2 110 GA Theme 3: Significant Relationships and Recovery from Ml 114 Researcher's Process 129 Researcher's Interpretations of Theme 3 131 GA Theme 4: Self-Care: Dealing with Stress and Personal Needs and Recovery From Ml 133 Researcher's Process 147 Researcher's Interpretations of Theme 4 147 GA Theme 5: Your Experience and Ideas about Death and Recovery from Ml 151 Researcher's Process 167 Researcher's Interpretations of Theme 5 168 GA Theme 6: A Personal Story of My Recovery and Ml 171 Researcher's Process 188 Researcher's Interpretations of Theme 6 189 The Identification of General Themes 191 CHAPTER 5: DISCUSSION Recovery Themes 193 The Experience of Loss 193 Living with Uncertainty 196 Changes in Self-Concept 198 Personal Needs and Self-Care 200 Care and Support 202 Taking Care of Others 207 Summary 208 Findings Unique to Younger Women 210 Evaluation of the Research Group 212 Cautions in Conducting GA Groups with Heart Patients 214 Limitations of the Study 215 Implications for Health Care Providers 216 Implications for Counselling Psychology 218 Implications for Research 219 Personal Statement 220 REFERENCES 221 APPENDICES Appendix A: Participant Information Letter 230 Appendix B: Cardiologist Endorsed Participant Information Letter 231 Appendix C: Brief Telephone Interview 232 Appendix D: Initial Interview 233 Appendix E: Informed Consent 234 Appendix F: Guided Autobiographical Themes (Weeks 1-6) 236 Appendix G: Follow-up Session Handout 242 Appendix H: Table of Participant Demographics 243 vi Acknowledgments My academic journey on many levels has been about following my heart. Writing the dissertation and particularly conducting research on women whose hearts have been injured has been my passion for many years now. I would like to take this opportunity to acknowledge and thank the many people that have supported me in this long and challenging process. I have much gratitude for having such a passionate and supportive dissertation committee, Dr. Maria Arvay, Dr. David Kuhl, and Dr. Marvin Westwood. Maria, working with you over the past several years has transformed my graduate experience and at times felt healing. I have appreciated all of your incredible support, encouragement, collaboration, consistency, truthfulness, and chutzpah throughout the entire dissertation process. I'm not sure I could have done this without you. David, thank-you for your belief in the value of my work and for seeing my bilingualism. I feel privileged and inspired to work with you in your carefully carved path between medicine and counselling psychology and your brilliant vision for providing more mindful and wellness based health care. Marv, thank-you for your expertise and insight around group process that helped me further define and solidify my research. This project would never have taken place without the women who agreed to participate in my study. A heartfelt thank-you for your commitment to my vision, your willingness to journey into your personal life review, and to your tenacity of spirit to offer your voice with the hope of helping other women who will experience myocardial infarction. I hope that each of you find your way home in your experience of recovery. I would also like to thank Sally Halliday for your skillfulness as a group facilitator, your expertise in life review and for your feisty humor. I am also grateful to, Elizabeth Lacquer, Bonnie McNaughton, Dr. Andrew Ignaszewski, Lana Lee, and Linda Wiens, who were supportive in helping to recruit women for the study. Thank-you to Kathryn Gretsinger, who used her public voice to help promote the research. Many thanks also go out to my peer reviewers, Dr. Gultaj Somani and Janice Conde who are both assets to the health profession. I would also like to acknowledge my beautiful circle of family and friends for all of their support over the last several years including my mother Jean, for being my unwavering cheerleader, my sister Tracy for support around many of life's details, and to my niece Kyla, who agreed to take hip hop lessons when I needed a break from data analysis. In terms of my chosen family, I would like to thank Debra Clarke, a gifted academic and loyal friend who has listened to every detail of my research; to Linda, Mia, and Leonie who occupy an important place in my heart around family. I would also like to thank Nettie Hew and the supper club, Victoria Smith, Dan Nagel, Dr. Erin Biddlecombe, Berend MacKenzie, Kathleen Irvine and company, Sandy Bodrug, and Katy Vela, and all of the other wonderful people who have provided me with much needed support, weekends away, humour, and deep conversation at different times. I would also like to thank Dr. Nancy Buzzell and Dr. Rhona Steinberg, for all of their support and who I cherish as mentors and friends. Finally, heartfelt gratitude goes to my divine friends Daisy and Yaffa who have loved me unconditionally and who have taught me about the importance of bringing simplicity and heart into the daily practice of living. vii The time will come When, with elation, You will greet yourself arriving At your own door, in your own mirror, And each will smile at the other's welcome. And say, sit here. Eat. You will love again the stranger who was yourself. Give wine. Give bread. Give back your heart To itself, to the stranger who has loved you. All your life, whom you ignored For another, who knows you by heart. Take down the love letters from the bookshelf, The photographs, the desperate notes, Peel your own image from the mirror. Sit. Feast on your life. (D. Walcott, n.d.) 1 CHAPTER ONE Be patient toward all that is unsolved in your heart and try to love the questions themselves like locked rooms or books that are written in a foreign tongue. (R.M, Rilke, n.d.) Introduction Coronary heart disease (CHD) is currently the leading cause of illness, disability, and death among Canadian women (Statistics Canada, 2002). In 1999, almost 20,000 women died as a result of heart disease. Myocardial infarction (Ml) or heart attack, the major medical emergency of the cardiovascular system, accounted for almost half of these deaths. Only recently has this 'silent epidemic' begun to receive more public attention or media coverage despite the fact that mortality rates from Ml in women are doubled in comparison to women dying from breast cancer (Statistics Canada, 2002). Historically, cardiac illness has been viewed as an affliction specific to middle-aged men. This misconception is partially attributed to the fact that heart disease and Ml occur, present more severely, and result in death at an earlier age in men than women (Kannel, as cited in Packard, 1992). In addition, misleading information from health care professionals and the media have suggested that Ml predominantly manifests with textbook symptoms occurring only in men. Despite the prevalence rates in women, most of the research regarding various aspects of heart disease and Ml is based primarily on studies conducted on men (Benson & Arthur, 1997; Jenson & King, 1997). Women have either been excluded from or dramatically underrepresented in most cardiac research. While a paucity of cardiac research has been solely devoted to examining Women, even fewer psychosocial studies have been conducted in the area of recovery following Ml (Boogard & Briody, 1985; Fleury & Cameron-Go, 1997). Moreover, little distinction has been made between groups of younger and older women (LaCharity, 1997, 1999). Consequently, little is known about younger women's recovery experiences. Research that has examined adjustment to Ml and included samples of women has mostly relied on descriptions of narrow constructs (see Keckiesen & Nyamathi, 1990) and is not conducive for portraying women's lived experience. The development of recovery services and support programs specific and germane to women is an area that has yet to be explored. In more recent studies, social support has been implicated as a significant factor in women's recovery from Ml (Benson & Arthur, 1997; Moser, 1994). Despite these findings, there is little evidence that therapeutic resources exist for younger women following Ml outside of conventional rehabilitation programs which focus on physical recuperation. In general, women have rarely been asked the necessary questions that will more fully illuminate their specific 2 needs for psychological treatment and care. Given the magnitude of this health concern for women, the importance of conducting research that specifically highlights women's experience and knowledge of their subjective experience of recovery from Ml is critical. With a progressively aging population, it is inevitable that greater numbers of women will suffer from ailments of the heart, including Ml. Subsequently, it is important that health professionals develop a better understanding of the recovery process in women following Ml. For counsellors working with female heart patients, it is important they be aware of the potential challenges and difficulties that may arise during their recovery and their subsequent needs for support. The Research Question The research question that was asked was: How do women under the age of 55 years, construct their experience of recovery following myocardial infarction? Within the framework of action research, a guided autobiography group created the context in which women engaged in a process of reflection and writing and shared their life histories and recovery experiences with other female cardiac patients. This small group context was conducive for women's expression of voice and the development of an individual and co-constructed dialogue reflecting their meaning making processes related to Ml recovery. Moreover, the lived experience of the group process served to comprise an important component of their recovery experience. This study also explored the suitability of using guided autobiography as a method of research with female heart patients. The Bridge between Counselling Psychology and Medicine The contributions of Counselling Psychology in health care are multifold and have an important place within the biopsychosocial model of disease. Given that chronic illness (e.g. cancer, heart disease, and stroke) currently represents the greatest threat to health, the impact of biological, psychological, and social factors in the origins of the illness process is critical (McRae and Smith, 1998). Departing from a biomedical perspective, which focuses on the biological origins of disease, the Counselling Psychologist's lifespan approach explores personal meaning making and views the individual in a more holistic manner, thus emphasizing the subjective nature of experience and the world of the individual (e.g. psychological, social, emotional, and spiritual factors). Health is explored in the context of the individual's location in the life cycle as well as in their lifestyle and relationships (Woolfe, 1996). In this sense, the lifespan approach addresses problems in everyday living and is particularly useful given the enduring nature of chronic illness and the interaction between disease processes with normal developmental processes. Historically, Counselling Psychology has been largely excluded from the realm of . 3 medicine as social workers, clinical psychologists, and psychiatrists have dominated the field. The work of these mental health professionals has aligned with the medical model and tended to focus on assessment, case management, and the prescription of medication rather than psychotherapy or counselling. In contrast, the shift from a biomedical to a biopsychosocial model of disease provides a natural link between Counselling Psychology and medicine. The current study demonstrates how research and practice in these areas can be bridged within the context of studying heart disease in women. Personal Perspective on Women's Cardiac Recovery While I have not personally been diagnosed with heart disease or myocardial infarction, there are several factors that have led to my interest in conducting this research. These include my experience of working in health care within the culture of cardiac health, interests in the lived experience of illness, feminist beliefs and values, and my own life experience of health and evolving understanding of wellness from an integrative perspective. Having worked in health care for many years, my exposure to hospital culture has deepened my understanding of the individual experience of heart related illness, and of issues and concerns that emerge while hospitalized. I have also come to understand the importance of creating opportunities for ill persons to talk about their illness experiences. Kleinman (1988) emphasizes the importance of "empathic witnessing" or the commitment to help a sick person facilitate the telling of their illness story, thus enabling them to give value to their illness experience. Although health care professionals do not typically provide patients with openings to share personal histories and meanings associated with their illness experience (beyond the reiteration of symptom history) as part of standard care, sick people will often seek out opportunities to do so. As a cardiology technologist, I have witnessed countless patients trying to engage almost anyone (including housekeeping staff and food service workers) in a dialogue about how their illness came to be, the severity of their symptoms, or the fact that they had never previously been hospitalized. Over the years, I too have listened to heart patients tell their stories of feeling devastated by their diagnoses and prognoses, demoralized by hospital routines, of being silenced and misunderstood by doctors and family members, and stories of loss, grief, and uncertainty about the future. I have also heard stories of heroic medicine, gratitude, human kindness and hope. Many of these stories surfaced through informal conversations with patients, as well as through interviews I conducted with women hospitalized with heart attacks as part of my Masters research (Bowers, 1996). Emerging from these interviews were stories about women's 4 struggles of surviving a potentially life threatening health crisis while already facing life altering decisions and transitions. Each participant recognized the value in talking with other women about their experience of heart disease as well as other aspects of their lives. To date, few resources to meet this need have been available to women. Since conducting my Masters research, I have found it increasingly difficult to separate my role as a technologist from my training as a counsellor and researcher. Consequently, while performing diagnostic heart tests, I have often slipped into these latter roles as I informally collect data through observing, asking questions, offering empathy, and theorizing about the experiences of those with whom I am working. Beyond wondering about individual processes of meaning making surrounding the illness experience, I have often reflected on the degree to which sick people feel seen and understood by their health care providers. I conduct my work through a feminist lens that views the experience of being heard and understood, and of being valued and validated, as a fundamental component of the healing process. Given that my work as a counsellor involves facilitating support, emotional healing, meaning making, communication and relationship building, and the exploration of existential concerns, I understand that much of this work is foundational within the context of experiencing illness. Healing, in this sense, attends to all parts of the individual, not just their physical self. Woodman (personal communication, May 2001) distinguishes between 'curing' and 'healing' in that the individual may be cured of her or his illness via medicine's curative approach without becoming whole. In contrast, wholeness speaks to the importance of bringing together the healing of women's bodies and their emotional, psychological, and spiritual selves. My experience of working in health care has left me with a deep sense of dissatisfaction and frustration with medicine's narrow views on health, the domination of bodily or medical knowledge, and the extent to which women's health has been medicalized and often underrepresented in terms of research and gender specific care. As a feminist, I understand that women are systemically oppressed in our society, and in general, have less power and authority than comparably situated men. Medicine has played an active role in perpetuating some aspects of women's oppression as bodies become a symbolic field for the reproduction of dominant values and conceptions (Crawford, 1984, as cited in Sherwin, 1998). In conducting research in the area of women and health, it is essential to look at the values and assumptions implicit in medicine's attitudes towards women. For example, women continue to be discouraged from trusting and listening to their bodies and intuitive knowledge, encouraged instead to rely on "expert" knowledge that shapes what we are capable of knowing. Dismissing women's bodily knowledge concerning their hearts could be deadly given the 5 accumulating evidence that women differ from men in terms of the presentation of cardiac symptomology. At the same time, women have historically been instrumental in effecting political and social change and creating alternative visions of women's health including the development of female-specific services and resources outside of mainstream medicine. Smith (1987) suggests that women have the power to change the ways we interact with the medical system and the ways we learn about the lived experience of being ill: Women have developed alternatives for women, which have been radical both in providing for a woman a place to begin from her knowledge of her own body and also representing a radical departure from the professional forms of social relations in which knowledge is appropriated and controlled by 'experts' (p. 53-54). A common theme emerging from my previous research (see Bowers, 1996), current cardiac literature related to women and Ml, and from conversations with other health professionals and female heart patients, is that there is a lack of emotional support for women recovering from cardiac illness. Consequently, in continuing with my vision for creating alternative health resources for women, I have developed my earlier research and more fully explored women's Ml recovery within a supportive women-centered context. Consequently, five women, ages 48 to 53, participated in an 8-week research group using guided autobiography to reveal how they constructed the experience of recovery within 3 years of having a heart attack. Their stories and reflections are presented in Chapter Four. The Organization of the Dissertation In Chapter One, I present the topic of the current study, women's recovery from myocardial infarction, and provide some background demonstrating the significance of this issue. I also briefly discuss how the shift from a biomedical to a biopsychosocial model of disease provides a natural link between counselling psychology and medicine in terms of both research and practice. As well, I present an overview of my research question and discuss my personal perspectives on women's cardiac recovery. I conclude with this summary of the organization of the dissertation. Chapter Two examines the relevant research literature beginning with an overview of the women's health movement and illustrating how the lack of attention to women's cardiac health is embedded within the larger story of how medicine has historically contended with women. This provides a context for understanding women's history of exclusion from cardiac research. I then examine various factors related to myocardial infarction in women and review a body of qualitative research that explores cardiac recovery in women. 6 Chapter Three describes action research (Sumara & Carson, 1997) using guided autobiography (Birren & Deutchman, 1991) as the methodological framework for conducting the study. As well, I discuss the format of the research and the selection and recruitment of participants, participant profiles, data collection, data analysis, and issues of validity. Chapter Four presents the findings of my research. I wanted to present these findings in a way that paralleled the unfolding of each research session. Consequently, recovery themes were described and presented by week, followed by women's autobiographies and group dialogue using a multilayered representation. Finally, I provided an analysis and interpretation of each session including self-reflections on group process. The chapter ends with the elucidation of six themes that emerged from looking across the weekly sessions. Chapter Five offers a discussion of the research findings within the context of the six recovery themes and previous research. As well, secondary findings unique to younger female Ml patients are discussed. I explore the implications of using guided autobiography for health care providers and discuss study limitations. Finally, I present some personal thoughts on conducting this research project. 7 CHAPTER TWO Literature Review Each woman responds to the crisis that...illness... brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived. (A. Lorde, 1997, p.7) Introduction In this chapter, I will review the relevant literature in the area of women's recovery from myocardial infarction thus providing a background and rationale for the current study. Literature searches were conducted using MEDLINE, CINAHL, Dissertation Abstracts, and Psych INFO on heart disease, myocardial infarction, cardiac rehabilitation, models of recovery, and psychological responses with women in the research subject category from the 1980's through May 2004. I begin with a brief overview of the development of women's health-care, which provides a natural segue to examining the exclusion of women from cardiac research. I will then examine myocardial infarction and the impact of this event on women. Research examining recovery from Ml will also be reviewed. Particular attention will be given to recent qualitative studies examining the subjective experiences of women. A Brief History of the Development of Women's Health-Care The lack of attention to women's cardiac health is embedded in the larger story describing how medicine has historically contended with women and their health and health-care. The fact that women have been under-researched, misdiagnosed, and overlooked in their treatment, reveals the status of cardiac care currently available to women. Moreover, women's exclusion from research in this area parallels greater systemic concerns involving issues of power, ownership, and voice, and which reveal the androcentric bias evident in medical practice and biomedical research. Having a sense of this history provides the context for understanding the obstacles that have prevented women from receiving gender specific cardiac care and highlights the importance of conducting the current study. The Foundational Work of the Women's Health Megamovement. Weisman's (1998) book entitled Women's Health Care: Activist Traditions and Institutional Changes delineates the historical development of the women's health megamovement as a series of five waves of public attention to women's health and bodily issues extending across the past two centuries in the United States. These waves of attention have also coincided with cycles of social movement including changes in existing gender role ideologies, heightened women's rights activism, and important developments in the medical profession and health-care system. Specific themes emerged during each wave as 8 predominantly middle-class women organized to improve the state of all women's health by addressing diverse health issues and countering the domination of primarily male physicians, legislators, and mainstream culture. The results of women's efforts led to renegotiating the meaning of women's health in terms of changes in health-care delivery, policy, and the relationships between women and health-care providers (Weisman, 1998). Key Issues in the History of the Women's Health Movement. In the Popular Health Movement of the early 1800's, women began to distribute health information and create public forums to talk about health and bodily issues with other women. Conflict emerged between male physicians practicing midwifery, and women who were traditionally responsible for childbirth, and the health of women and their families (Weisman, 1998). By the late 1800's, conceptions of 'women's health' as denoting primarily reproductive functions, had emerged as ideas about biological determinism and differences between the sexes gained prominence. Dominant medical theories suggested that women's reproductive organs were central to their overall physical and mental health, while prevailing gender ideology defined maternity as a woman's primary social function and moral purpose, and helped to further legitimize medicine's focus on reproduction for the next century (Smith-Rosenberg, 1985). Public policy, such as campaigns to prohibit abortion and contraception, helped to strengthen the link between reproduction and women's health, and were heavily supported by male physicians as declining fertility rates posed economic threats (Weisman, 1997). Key issues in this wave of the health movement focused on the efforts of female physicians to define their distinctive expertise in women's health and their professional role in medicine as more women gained access to medical training (Weisman, 1998). During the Progressive Era, extending into the 1920's, all of women's reproductive functions were being transformed into medical services as a result of physician's entrepreneurial interests and efforts to frame these as preventive health-care (Weisman, 1998). While women's health advocates were divided between supporting either maternal and child health programs or sexual and reproductive rights, both groups continued to equate women's health with reproductive functions. During this time, conflicts had emerged between private physicians and new services (e.g. birth control clinics and prenatal care) established for women by public health nurses and female reformers (Weisman, 1998). The Women's Health Movement of the 1960's and 1970's presented the first major challenge to the medical profession's view of women's health by broadening their health concerns beyond the scope of reproduction. The dominant theme in this wave was women's shared experience of feeling a lack of control over their bodies. In response, women argued for 9 the right to make informed decisions about all aspects of their health-care (Weisman, 1998). Problematic was the fact that the medical profession was male-dominated and viewed as "treating women in a condescending manner, withholding information, overusing surgery, prescribing risky drugs, and devices, medicalizing women's reproductive functions, and reinforcing sexual stereotypes by encouraging reproduction over pregnancy prevention" (Weisman, 1998, p. 72). Most notably, activists strongly criticized medicine's gate keeping authority to control women's reproductive lives by regulating access to abortion and contraception services (Weisman, 1997), use of untested drugs such as thalidomide and diethylstilbestrol (DES) prescribed to pregnant women often without their knowledge and which led to miscarriages, birth defects, and reproductive disorders in offspring (Johnson & Fee, 1994); and inappropriately informed consent procedures including one-step biopsy/mastectomy procedures (Weisman, 1997). Women's efforts in directly challenging medical authority profoundly impacted women's health-care and led to the legalization of abortion, health education campaigns, the creation of alternative health services (e.g. women's health centers, abortion services, and birthing centers) which competed with mainstream care, and the large influx of women into medical schools during the 1970's (Weisman, 1997). Another significant legacy of this movement were the guidelines implemented by the Food and Drug Administration (FDA) in 1977 that barred women of childbearing potential from participating in clinical research (until adequately safe information could be derived from animal and early clinical studies) in response to the outcry of the DES and thalidomide disaster (FDA, as cited in Vidaver, Lafleur, Tong, Bradshaw, & Marts, 2000). In essence, these protectionist policies eliminated all premenopausal women from medical research, thereby ensuring that the approval of new drugs, devices, and interventions studied from that point forward was based almost solely on studies of men or possibly postmenopausal women or both. As Dresser (1992) noted, "in the name of potential protection for potentially pregnant women and their fetuses, all women [had] lost opportunities to improve and extend their lives" (p. 25). While the first three waves of the health megamovement centered on public awareness of women's health issues and information, competition and legitimacy issues around health professionals, and issues of reproduction, fertility, and abortion, it was not until the latter half of the 1900's that issues regarding biomedical research and access to treatment began to more obviously shape the direction of women's cardiac health services. In the most recent wave of the health movement, advocacy groups in the early 1990's argued that women's health had been neglected with respect to research and care, and demanded equity in access to the benefits of medical research and treatment (Weisman, 1998). Given the broad emphasis on women's health throughout the lifespan, specific claims 10 suggested that women's health had been studied much less than men's; women had been excluded or underrepresented in large research projects resulting in large gaps of knowledge and inadequate treatment; research on women had focused too narrowly on the reproductive concerns of younger women while neglecting the health of older women, and that not enough women were primary investigators in health research funded by the government (Weisman, 1997,1998). In contrast to previous health movements, efforts to shape the women's health agenda were made from within the system by women in positions of influence (e.g. in medicine, government, health organizations) who sought to influence government policies in terms of funding medical research specific to women's health, the inclusion of women as research participants in clinical studies, reforms in medical education and training, programs to encourage women to become primary investigators in health research, and improvements in health service delivery to women (Weisman, 1997,1998). Key accomplishments also included the creation of government offices and branches dedicated to the coordination of women's health activities (LaRosa & Pinn, 1993). The work of these offices have been groundbreaking in terms of facilitating the policy changes advocated by feminists and which eventually helped change the face of the women's health research agenda in the United States. For example, in 1990, the Society for Women's Health Research, working in conjunction with the U.S. government, requested that the General Accounting Office (GAO), a branch of the National Institutes of Health (NIH), investigate the progress of previously established guidelines for the inclusion of women in federally funded biomedical research (Vidaver et al., 2000). The GAO reported that the research model for the "typical 70kg man" was alive and well and that there was little evidence that the NIH had implemented earlier policy guidelines (Greenberger & Marts, 2000, p. 463). Consequently, the Society played a significant role in drafting subsequent legislation, which established the Office of Research on Women's Health (OWHR), a NIH office designed to co-ordinate and monitor efforts to improve women's health research, and put the requirement for the inclusion of women and minority groups in all federally funded research studies, and for analysis of clinical trial data by subpopulation, into law (Greenberger & Marts, 2000). Endeavors such as the Women's Health Initiative, a massive research project addressing the major cause of death, disability, and frailty among middle-aged and older women, demonstrated the newly emerging strategic commitment of the NIH to make women's health a priority (Healy, 1991). 11 Interestingly, during these same years, the FDA published its new guidelines for studying and evaluating gender differences in drug trials, thus replacing the 1977 protectionist policy that excluded most women of childbearing potential from clinical trials (FDA, as cited in Baylis, 1996). [Significant to the FDA's decision was the work of AIDS activists who challenged protectionist policies regarding access to experimental drugs thus modeling a language and political strategy useful to feminists in pursuing the women's health agenda (Johnson & Fee, 1994)]. Women's access to the benefits of biomedical research and women-centered medical treatment and care continues to remain a central concern in the women's health-care agenda of the 21st century. Summary As the institution of health-care became more formalized and male-dominated, gender-based tensions emerged questioning who had the authority to define and control health-care practices (Weisman, 1998). The dissension surrounding these concerns in one wave of the health movement often set the stage for activist efforts in the next. What becomes evident throughout this history is that women have not been passive recipients of medical control (Weisman, 1998). As powerful consumers, they provided a key market of health services and products, and instigated important changes in medical practice. As health-care providers, women have repeatedly demonstrated their commitment to generate new services and organizations to meet the health needs of women not adequately addressed by mainstream providers. Despite these successes, gender continued to play a fundamental determinant in terms of prevailing conceptions of women's health and health-care. More specifically, Weisman (1998, p. 4) suggests that health-care has never simply been the rational application of biomedical science or technology to the problems of the body. Instead, it is a negotiated social arrangement for providing personal services that are perceived to be needed and appropriate by providers, consumers, insurers, and policymakers, all of which reflect social and cultural values and beliefs, and incorporate dominant social and power interests. In this sense, the male domination of the health-care system, including medical practice and biomedical research; the concentration of money and power among men; and the problems women report with access and appropriateness of health-care has reflected an "androcentric bias," thus focusing on the bodily experiences and diseases of men, and either neglecting those experiences of women or narrowly construing them in terms of reproduction (Rodin & Ickovics, 1990). Moreover, masculinist models of health have repeatedly served an ideological purpose by masking the social constructions of health, making them appear natural (Baylis, Downie, & 12 Sherwin, 1998; McCormick, Kirkham, & Hayes, 1998). For example, the white male became the prototype of the human research subject, and male health became the norm against which definitions of women's health are made. In the case of cardiac research and care, male norms have been used to judge what is appropriate and necessary for women. Current Status of Women's Inclusion in NIH Research In a recent survey of articles, published in four major medical journals between1993 and 1998, Vidaver et al. (2000) explored whether the NIH guidelines, requiring the inclusion of women in clinical research, is currently reflected in the scientific literature. Findings suggest that although the majority (about 80%) of NIH funded studies included women as study participants, only a small percentage (25-33%) of studies that included women analyzed data by gender. In both cases, these figures had not improved significantly over the 5-year period. While this situation may be improving, the data demonstrates that the policies for inclusion of women in biomedical research have not yet been fully implemented. The importance of including women in clinical research and conducting gender-based data analysis is essential to understanding the impact of disease states and clearly has implications for treatment and patient care. Vidaver et al. (2000) suggest "until potential differences in response to treatment and interventions between women and men are adequately addressed, we cannot be satisfied that sex-specific adverse events are unlikely to occur" (p. 503). Moreover, they recommend increased awareness and monitoring of recruitment and retention of women in clinical research and for the consistent practice of conducting analysis of data by gender. Women's Health in Canada While the Canadian history of women's health-care has been significantly less documented than that of the United States (US), it appears that Canada is moving in the direction of developing clinical research policies that serve women's health interests as well as men's. Baylis (1996) argued that when US policy makers enacted policies addressing gender equity in clinical research several years ago, a strong backlash was observed in Canada and managed to diminish some of the force of these policies. More specifically, this backlash fuelled ongoing debates about the facts of exclusion and the need for inclusion of women in research, and reflected a resistance and distrust of what is often perceived as a female-biased feminist agenda (see Baylis, 1996). Despite this resistance, policies and guidelines supporting gender inclusion and the presence of underrepresented groups in Canadian research began to emerge in greater force towards the latter part of the 1990's (see Baylis, 1996; Baylis et al. 1998). Moreover, the development of federally funded programs of research including five Centers' of Excellence for 13 Women's Health, located across Canada, and the recent and timely development of the Canadian Institutes of Health Research (CIHR) hold considerable promise in terms of strengthening policy-focused research on women's health in this country. The Exclusion of Women from Cardiac Research The demands for equity in access to biomedical research and appropriate treatment and care for women have been distinctly existent in the area of heart disease as claims challenging women's exclusion and under representation from clinical trials were clearly identified during the most recent wave of the women's health movement. In a review of studies beginning in the 1950's, Thomas and Braus (1998) suggest that early cardiac studies either excluded women entirely, included women in their study populations but omitted them from data reports, or added women to their study populations after the studies had been conducted for some time. Despite the magnitude of this health concern in women, the preponderance of information regarding the etiology, incidence, management, and rehabilitation of heart disease has been conducted almost exclusively on male populations (Healy, 1991; Wenger, Speroff, & Packard, 1993). In attempts to expose this gender disparity, several well-known studies of cardiovascular disease were identified and widely publicized, during the 1990's, as key examples of federally funded projects that did not produce data that was generalizable to women (Mastroianni, Faden, & Federman, 1994). Each of these studies has had widespread influence on the treatment and prevention of heart disease for both genders, despite the fact that women were excluded as study participants (Healy, 1991). For example, the Multiple Risk Factor Intervention Trial (MRFIT) was designed to determine the efficacy of risk modification in 12,866 men, aged 35-57, who were at high risk for developing heart disease because of elevated serum lipids, hypertension, and cigarette smoking (The MRFIT Group, 1977). The Coronary Drug Project (CDP), was a randomized, controlled clinical trial developed to evaluate the efficacy of various lipid influencing drugs on prolonging the lives of men, aged 30-64, with a prior history of heart disease (Meinert, 1986 as cited in Mastroianni et al. 1994). Similarly, the Physicians' Health Study (PHS) was a randomized, controlled trial, designed to test whether aspirin in low doses reduced the risk of myocardial infarction among 22,071 healthy male physicians (Steering Committee of the Physicians' Health Study Research Group, 1989). Investigators in these studies claimed that the exclusion of women as research participants was based on their perception that heart disease was an illness primarily afflicting middle-aged men, and in the latter study, that few middle-aged female physicians with heart disease existed when the study was conducted in the early 1980's (Mann, 1995). 14 The Baltimore Longitudinal Study of Aging (BLSA), a community-based study of normative aging, issued a report entitled "Normal Human Aging" based on data comprised of over 1,000 men (Shock et al., 1984). Interestingly, the title of the monograph implicitly equated 'normal' with a 'male' perspective, demonstrating how women's experience becomes camouflaged under the generic category of human. Despite the fact that women represented the majority of the elderly population, no women were included as study participants during the first 20 years of Baltimore trial. Moreover, when risk factors for heart disease were assessed, several years into the study, investigators had difficulty drawing conclusions related to women. Arguments defending the male-only design point to a time, approximately two decades ago, where a perceived epidemic of heart disease among middle-aged men was prevalent (Healy, 1991; Mann, 1995). Other experts disputing the charge that cardiac research has neglected women have cited various arguments for justifiably excluding women from clinical trials. For example, the participation of women has been associated with unwarranted research costs, difficulties with recruitment and/or maintaining participation, complications and disruptions in research protocols (e.g. due to hormonal fluctuations), and protectionist measures (Baylis et al., 1998; Mann, 1995). Despite these claims, Healy (1991) advises that the legacy of this early cardiac research must still be recognized. Namely, that the impact of these studies has represented "decades of sex-exclusive research that has reinforced the myth that coronary heart disease is a uniquely male affliction and has generated data sets in which men are the normative standard" (p. 275). As well, health stereotypes about women including beliefs that 'women somaticize their emotional problems,' and that 'women just don't get heart disease' further contributed to physician's failure to recognize heart disease as a serious condition in women (Dresser, 1992). The consequences of excluding women from cardiac research is that the data necessary for making choices regarding prevention and treatment for women are unavailable and must be extrapolated from data collected on men, despite physiological and psychosocial gender differences that may exist (Baylis et al. 1998; Healy, 1991). This has inevitably led to biased standards of care and the failure to fully consider aspects of heart disease that are specific to women. While efforts of the last wave of the women's health movement have played a fundamental role in altering government and funding policy leading to greater initiatives in women's health, the "androcentric" history of cardiac research has resulted in a scarcity of medical knowledge about heart disease in women until recent years. In this sense, the social scaffolding that supports various societal beliefs about gender ideology and health has made it challenging for women to become visible within the domain of cardiac health. 15 Myocardial Infarction "The experience of [Ml] is typically sudden, frequently without forewarning, often dramatic, usually distressing, and almost always life-threatening" (Byrne, 1990, p. 369). In this sense, individuals often shift from feeling well to feeling sick very quickly. Ml occurs when an obstruction in one of the coronary arteries prevents sufficient oxygen to supply the heart resulting in the death of a portion of the heart muscle (American Heart Association, 1996). Denial is commonly documented among individuals first recognizing cardiac symptoms (Byrne, 1990), which are often attributed to other illnesses such as gastrointestinal conditions (e.g. heartburn), flu, or arthritis. As well, various symptoms of Ml can also mimic features of anxiety or panic (American Heart Association, 1996). While symptoms of Ml may be non-existent, mild, or severe, the most classic manifestation is a pressure, squeezing, fullness or pain in the center of chest, which may radiate to the shoulder, neck or arms. Accompanying indicators may include sweating, shortness of breath, nausea or vomiting, and a sense of impending doom or imminent death (American Heart Association, 1996). The time from the onset of Ml symptoms to diagnosis and treatment is essential in terms of minimizing heart damage. Diagnosis of acute Ml is based on the individual's clinical history, electrocardiograph findings, and the measurement of cardiac enzymes found in the blood (American Heart Association, 1996). While immediate medical interventions typically revolve around the restoration of adequate blood supply through the coronary arteries, the standard treatment for Ml may include drug therapy, medication, risk factor reduction, stress management, and cardiac rehabilitation (Beery, 1995; Wenger, 1992). Women and Myocardial Infarction Current literature increasingly suggests that the expression of Ml differs in women than in men (Chiamvimonvat & Sternberg, 1998). The Framingham heart study is widely recognized as a leading longitudinal study of sex-specific information concerning coronary and cardiovascular disease incidence as well as the impact of multiple risk factors on disease occurrence in both women and men (see Murabito, 1995). Although a full review of this material is beyond the scope of this study, an overview of some of these features will provide a background from which to explore women's Ml experiences and needs. Age of Onset. Age is a prominent feature in the onset of heart disease in women as initial cardiac symptoms tend to be delayed, on average 10 years later for women than for men (Lemer & Kannel, 1986; Wenger, 1999). Wenger (1999) suggests that one in eight or nine (American) women aged 45-65 have clinical manifestations of CHD, in contrast to one in three women older 16 than 65 years of age. Data from the Framingham study suggests that Ml, as the principal manifestation of CHD, is less common in women than in men, as women typically present initially with angina pectoris or chest pain (Kannel as cited in Packard, 1992; Wenger, 1999). While the incidence of Ml is lower in women than in men across all ages (below 85 years), this gender difference narrows significantly above age 65 as Ml becomes a serious health concern for elderly women (Statistics Canada, 2002). Data from Statistics Canada indicated that in 1999, almost 800 Canadian women died from acute Ml between the ages of ~25 and 64 compared to almost 11 times this number at ages 65 to 85+ years. Framingham data also suggests that Ml is more likely to be fatal in women than in men, and that mortality rates in the first month and year also tend to be higher in women (Kannel, as cited in Packard, 1992). As well, post-MI morbidity, rates of re infarction, and the presence of silent and unrecognized Ml, appear to be higher among women (Maynard, Martin, et al. 1992; Wenger, 1992, 1999). In an extensive review of the literature, Nohria, Vaccarino, and Krumholz (1998) concluded that the advanced age of women was the most significant factor contributing to their decreased survival following Ml compared to men. Nohria et al. also suggested that gender-related differences were less related to intrinsic characteristics of coronary disease in women than to a variety of factors associated with female sex including a greater incidence of cardiac risk factors, decreased efficacy of therapeutic modalities, and a tendency toward the under use of treatments in women relative to men. Similarly, Wenger (1999) attributes women's poorer prognosis to a greater occurrence of cardiac complications following Ml (e.g. shock, heart failure, recurrent chest pain) and to the prevalence of co-morbidities (concurrent medical conditions such as arthritis, diabetes, or cancer) often observable in older women. Risk Factors. While risk factors for heart disease include behaviors, lifestyle patterns, and genetic characteristics, it is the combination of these factors that serve as predictors for the development of Ml. Understanding "the social context of women's experiences is central to risk reduction efforts" (Fleury, Keller and Murdaugh, 2000. p. 968). Wenger (1999) suggests that a number of social factors including lower socioeconomic status (e.g. education, occupational status, marital status, parenthood and income) and the social roles that women hold may influence their understanding and appreciation of their health as well as their ability to engage in risk prevention or reduction. More specifically, women's "otherness orientation" plays a pivotal role in how they the way that they prioritize and adopt health enhancing actions (see Fleury et. al, 2000; King & Arthur, 2003; Hawthorne, 1993). 17 Although the major risk factors for Ml in women are similar to those found in men, and include age, hypertension, hypercholesterolemia, smoking, obesity, diabetes, and physical inactivity (Peberdy & Ornato, 1992; Wenger, 1999), risk factor epidemiology appears to differ between the sexes (Centers for Disease Control as cited in Wenger, 1999; Murabito, 1995). Eaker (1989) contends that when studying women and disease, it is essential to also consider factors related to environment and psychological milieu. Follow-up data from the National Health and Nutrition Examination Survey (NHANES) demonstrates that while hypertension and obesity imparts a comparable relative risk for women as for men, diabetes is a far more serious risk attribute for women (Centers for Disease Control as cited in Wenger, 1999). NHANES data also suggests that smoking represents a greater relative risk in women than men, while hypercholesterolemia is a somewhat greater risk in men than women (Centers for Disease Control as cited in Wenger, 1999). Female specific risk factors for Ml, such as the use of oral contraceptives (OC), have also raised serious concerns. Research in this area has demonstrated mixed findings but suggests that the degree of risk appears to be influenced by dosage, preexisting cardiac risk factors, and especially the presence of cigarette smoking (see Rosenberg, Palmer, Rao & Shapiro, 2001). Natural and surgical menopause (following hysterectomy), resulting in estrogen depletion, is also associated with the increased development of heart disease in women. Current research is challenging previously held beliefs that hormone-replacement therapy (HRT) is cardio protective for menopausal women, given the increasing incidence of cardiovascular events in certain groups of older women following the first few years of use (McNagny & Wenger, 2002). Up until now, data in this area has been primarily based on observational studies and clinical trials in primates (Stampher & Colditz; Adams, Laplan, Manuck et al. as cited in the Writing Group, 2002). Most recently, the Writing Group (2002) for the Women's Health Initiative published startling findings of the first randomized primary prevention trial of postmenopausal hormones. One component of the study comparing estrogen and progestin with placebo was unexpectedly terminated as results demonstrated women's increased risk of breast cancer, heart disease, stroke, and pulmonary embolism. Further study findings suggested that taking estrogen alone may be safer in women with hysterectomies. While available research demonstrates comparable benefits of risk factor reduction in both women and men, less attention has been devoted specifically to women in this area over the past three decades compared to men (Wenger, 1999). Symptom Presentation and Diagnosis. In women, the clinical presentation of Ml symptoms often differs from the classic 18 descriptions expressed by men. The range of women's symptoms can include pain in other locations other than the anterior chest, such as the lower jaw and teeth, arms, shoulders, back and abdomen (Sullivan et al. 1994). Women also report a greater incidence of general weakness, palpitations, dyspnea, presyncope, fatigue sweating, nausea or vomiting as chest pain equivalents (Eaker, Packard, Wenger, Clarkson, & Tyroler, 1988; Maynard, Litwin, Martin, & Weaver, 1992). As well, women experience more silent Mi's than do men and nearly half of women's Mi's are unrecognized (Lerner & Kannel, 1986). Medicine has often referred to these differences in women as "atypical," thus perpetuating earlier misconceptions that heart disease is a 'male' illness and the norm against which women's experiences are defined. Consequently, women's coronary symptoms have often been misdiagnosed and attributed to non cardiac origins (including psychiatric indicators thus portraying women as 'overly sensitive' or 'neurotic') during initial medical evaluations (see Murdaugh, 1990). The lack of early diagnosis of Ml symptoms in women has also been attributed to beliefs about the cardio protective nature of estrogen in premenopausal women, thus causing health professionals (and the general public) to discredit women's presentation of angina symptoms to causes other than heart disease. Given that noninvasive cardiac tests have lower accuracy in women (Hung et al. 1984), which can result in improper diagnosis and treatment, Chiamvimonvat and Sternberg (1998) argue that women should be investigated more thoroughly than their male counterparts. Increasing evidence also suggests that physicians pursue a less active or aggressive approach to the diagnosis and management of heart disease in women compared to men (Seils, Friedman, & Schulman, 2001). More specifically, several studies have demonstrated that women are less likely to be referred for coronary angiography and revascularization procedures (Ayanian & Epstein, 1991; Cochran, 1992) including coronary bypass surgery (Steingart et al. 1991) despite symptomology of similar or greater severity, thus suggesting a potential gender bias in the delivery of cardiac care. Help Seeking Behavior. Survival from an acute Ml is closely related to the individual's ability to promptly seek treatment following the onset of symptoms. Life-threatening arrhythmias are typically the cause of death in those individuals with Ml who are unable to receive rapid medical assistance (American Heart Association, 1996). Consequently, the effectiveness of cardiac injury reducing drug interventions depends on their rapid administration, which ideally occurs within 90 minutes after symptom onset (International Study of Infarct Survival (ISIS-3) as cited in Dempsey, Dracup and Moser, 1995). 19 In general, the literature reports a persistent delay in treatment seeking behavior among women compared to men following the onset of cardiac symptomology (Jensen & King, 1997; Moser & Dracup, 1993). While women's conditions may be more serious at the time of hospital admission, their eligibility for drug therapies may be seriously compromised as a result of this delay. In a study that explored the psychosocial processes by which women decide to seek care for symptoms of Ml, Dempsey, Dracup, and Moser (1995) found that although women immediately perceived their pain as abnormal, they tended not to acknowledge its serious nature until self-treatment and other coping strategies failed to improve the situation. Dempsey et al. suggested that several factors contributed to this delay including women's tendency to attribute symptoms to benign or non cardiac causes (even when participants had a history of Ml), concerns about inconveniencing or worrying family members or friends, and women's hesitation to involve others in their personal health matters. Women in this study recognized the threat to their well-being and sought treatment only after symptoms remained constant or increased in severity. Perceived low risk for CHD coupled with the nonspecificity of initial symptoms may also delay women's treatment seeking behavior (LaCharity, 1999). In summary, while cardiac literature has historically defined men's experience of Ml as 'typical,' recent studies examining cardiac illness in women increasingly demonstrate that gender differences exist across various clinical features. These differences represent the starting place from which to better understand women's needs for care and recovery following Ml. (For a more comprehensive discussion regarding gender differences and Ml, see Charney, 1999; Chiamvimonvat & Sternberg, 1998; Julian & Wenger, 1997). Impact of Ml Physical illness and medical treatment can be highly distressing, particularly in the case of a potentially life threatening event. The onset of myocardial infarction may occur unexpectedly or after ongoing illness hence leading to changes in both the individual and family members (Fleury & Moore, 1999). As patients must advance through a process of coping and adjustment to their illness, so must family members as they too are often thrust into the position of navigating multiple challenges, albeit from a different perspective. While Ml is characterized as an acute illness event, it is generally indicative of a larger disease process. Consequently, various aspects of an individual's physical, emotional, psychological, and/or spiritual functioning/self may be impacted. Bury (1982) contends that "illness, and especially chronic illness, is precisely that kind of experience where the structures of everyday life and the forms of knowledge which underpin them are disrupted" (p. 169). This disruption may call for a restructuring of self in terms of who one is, and what one is able to do. May (1977) also refers to the "dissolution of self" to describe the extent to which illness can challenge an individual's sense of meaning and human integrity. Frank (1991) suggests that "the loss that accompanies illness begins in the body then moves out until it adversely affects the relationships connecting that body with others" (p.36). Similarly, Shuman (1996) refers to a "hierarchy of loss," to describe loss associated with chronic illness by the degree of injury or harm that it causes a person or family. More specifically, Shuman suggests that individuals living with chronic illness undergo various physical, emotional, and cognitive losses that may dramatically limit their ability to express or carry out important aims, values, projects, or roles and which may result in potentially undermining a personal or family identity, narrative, or life story. If grave enough, Shuman suggests these losses may culminate in a loss of self, severe moral injury, or the elimination of any possibility of a good life. He concludes that the degree to which the experience of loss moves along this pathway will impact the degree of individual suffering. The stressors associated with Ml are diverse and will vary depending on their meaningfulness to the individual, the severity of the event, and the individual's location within the trajectory of the cardiac illness experience. In addition to the disbelief and shock often characteristic to the acute phase of Ml, patients (and family members) often experience a range of emotions before and after diagnosis including anger, worry or fear, frustration, guilt, helplessness, and emotional exhaustion (Miracle & Hovekamp, 1994; Titler, Cohen, & Craft, 1991). For example, individuals may feel anxious or fearful about the often dramatic and painful nature of cardiac symptoms, losing physical control (e.g. over bodily functions) or at the prospect of dying. Others may perceive becoming ill as an inconvenient intrusion or interruption in their busy life and may worry how work or family will manage in their absence (Bowers, 1996). The experience of hospitalization can also be highly distressing given the constant reminders of illness and mortality, the often disquieting nature of medical examinations and treatment procedures, the frequent sense of unfamiliarity, loss of autonomy and control, boredom, and often a perceived lack of adequate emotional support (Cohen & Lazarus, 1979; Fleury & Moore, 1999). As well, the lack of privacy often inherent to coronary and/or critical care units, frequently results in patients witnessing sights and sounds associated with other patient's suffering and/or treatment. Fleury and Moore (1999) also suggest that the experience of feeling uninformed while hospitalized can be distressing for both heart patients and their families. Receiving satisfactory information and effective communication from health-care professionals has been widely cited in the health literature as an important prerequisite to patient satisfaction (Bensing, 2000; Hall, 21 Irish, Roter, Ehrlich, & Miller, 1994; Weisman & Teitelbaum, 1985). Subsequently, the needs of both patients and family members during the acute phase of Ml may be similar and include the need for information, emotional support, and an understanding of the patient's prognosis (Moser & Dracup, 1993). The most common and expected psychological consequences following Ml are anxiety and depression (Byrne, 1990; Croog, 1983; Fielding, 1991) however most psychosocial research in this area has also focused predominantly on men. MacKenzie (1993) identified perceived loss of control and reduced positive affect as primary components of psychological distress following Ml in women. For hospitalized Ml patients, anxiety may fluctuate over time depending on the perceived seriousness of the particular challenge faced during their immediate illness experience. More specifically, anxiety may be higher after the onset of increasingly severe symptoms when the threat to life is the greatest, prior to diagnosis, and again before leaving the hospital when constant medical care and cardiac monitoring must be relinquished (Byrne, 1990). The shift towards depression is more likely to move towards clinical significance further into the process of recovery when the individual has had sufficient time to comprehend the seriousness of her illness and threat to life, and the potential for future incapacity (Byrne, 1990; Fielding, 1991). Psychological distress following Ml may also result from the potential threat to or changes in one's bodily integrity, functional capacity, sense of well-being, self-concept and life roles, values and beliefs, social and occupational functioning, financial security, significant relationships, spousal and familial cohesiveness; commitments and future plans (Cohen & Lazarus, 1979; Kleinman, 1988; Pollin, 1995). Pollin (1995) argues that an ill person's psychological equilibrium is threatened not just by the fear of multiple losses, but of the anticipation of unknown changes in one's life. Other factors shaping a person's affective and behavioral response to Ml and their experience of recovery may include preexisting life stress, personality factors, and the degree and quality of social support (Byrne, 1990). As well, sociocultural factors including social economic status; values and beliefs about what comprise health, illness, and disease; perceptions and understanding about bodily symptoms and functioning, and beliefs about treatments and/or healing customs will impact an individual's experience of illness, treatment and recovery (Loustaunau and Sobo, 1997). To illustrate, women suffering from Ml must also contend with the consequences of androcentric perceptions about cardiac illness in terms of accessing care, resources, and/or educational materials that are inclusive and relevant to women. The extent to which Ml impacts various aspects of a woman's physical, psychological, emotional, cognitive, and social self is 22 evident. Moreover, to better understand a woman's illness experience it is important to consider the cultural, socioeconomic, and political context in which she exists. While medicine primarily focuses on ameliorating the physical distress associated with Ml, psychological, emotional, and spiritual healing and care must also take place to help each individual move towards wellness. In this sense, there is a distinct need for informed health care professionals, including Counselling psychologists, to work as part of an interdisciplinary team that understands and supports the emotional healing of women with heart disease. Social Support Evidence suggests that social support, and in contrast, social isolation, are associated with CHD morbidity and mortality. Chesney and Darbes (1998) suggest that individuals who are socially isolated are more likely to become depressed and engage in harmful health behaviors than those with adequate social support networks. In turn, depressed mood and deleterious health behaviors are a significant predictor of mortality in women and men following Ml. Consequently, the provision of social support is a fundamental component of recovery however, it is important to examine the quality of social support provided to women. While (heterosexual) marriage might be construed as the epitome of social support, it is not clear that this arrangement provides the same health benefits for women as it does for men. In a study that examined 246 post-MI patients, Young and Kahana (1993) found that women, including those who were married, received less assistance with household tasks and meals than men, where both had a history of Ml. At one year post Ml, the relative risk of death for married women compared to men (when age was controlled for) was 3 times the risk observed in men. In the context of women recovering from Ml, social relationships including marriage may not necessarily be an ideal substitute for social support (Chesney & Darbes, 1998). Consequently, a significant recovery intervention for women following Ml may include seeking sources of positive emotional support which may be found with other female heart patients. Cardiac Rehabilitation Accumulating evidence suggests that cardiac rehabilitation (CR) is an essential component of the treatment and recovery of patients with cardiac illness. The stated goals of CR are focused on assisting participants achieve a more complete recovery and return to optimal levels of medical, physiological, vocational, and psychological functioning following a significant cardiac event and to prevent the progression of underlying cardiovascular disease (Fleury & Cameron, 1997; King & Teo, 1998). To accommodate these goals, hospital and community based programs typically provide multifaceted services including prescribed exercise, education, behavioral and lifestyle interventions to enhance risk factor reduction and 23 stress management to facilitate coping with the disease process (King & Teo, 1998). Despite the availability of CR services, only a small percentage of women who experience cardiac events, including Ml, are referred to or vigorously encouraged by physicians to participate in these programs (Ades, Waldmann, Polk & Coflesky, 1992; Halm, Penque, Doll, & Beahns, 1999). Moreover, women have historically demonstrated greater nonattendance and dropout rates compared to men in cardiac rehabilitation programs (Hamilton, 1990). More recent studies examining women's participation in cardiac rehabilitation suggests that various features of conventional programs are not necessarily meeting women's needs (see Moore, 1996; Limacher, 1999). In one study, Moore (1996) examined participation factors influencing women's program attendance. Study findings suggested that women wanted more social interaction during exercise, peer group support, and encouragement and emotional support from staff. An all female cardiac rehabilitation program was developed in Ontario during the late 1990's that blended features of conventional (male focused) rehabilitation with various features specific to the identified needs of women (e.g. including modified exercise, emphasis on safety and monitoring, small classes and group participation, and personalized goal setting). The appearance of the facility was also designed to appeal to women's taste and includes attention to color, comfortable seating and a meeting area that encourages socializing (Unsworth, personal communication, December 22, 2000). Preliminary findings examining the effectiveness of this program have demonstrated that improvement in the functional capacity and the compliance of women was significantly higher compared to similar historical data (Sternberg, Chiamvimonvat, Unsworth, & Price, 1999). Sternberg et al. concluded that some women experience greater benefits from a female-specific cardiac rehabilitation program. Women and Recovery From Ml - Qualitative Research Review Qualitative studies exploring women's subjective experiences of significant cardiac events began to emerge in the field of nursing during the mid 1980's. Departing from traditional research that had either excluded or underrepresented women, nursing investigators introduced research methods that focused on asking questions that would better portray how women experienced cardiac illness. Consequently, these studies have contributed to a small, yet growing body of knowledge specific to women. In the following section, I will review several of these studies. In a ground-breaking study, Boogard (1984, 1985) used semi-structured interviews to compare the rehabilitation (recovery trajectory) of 10 women and 10 men, aged 25-55, following Ml. Her research demonstrated that women's experience of Ml recovery at 3 and 6 months differed significantly from men's in terms of return to physical activity, psychosocial factors 24 including mood and relationships with family members. Within 1 week of hospital discharge, women reported engaging in higher levels of exertion than men, including light housework . Most of the women did not perceive these activities as work, nor did they consider this to be potentially harmful to them. In contrast, post-discharge activities for men included resting, relaxing, and walking. By week four, half of the men were participating in organized walking and rehabilitation programs, while women tended to increase their level of housework . Study findings also indicated that while both women and men reported feeling depressed following Ml, about half of the women described feelings of guilt related to their inability to carry out housework in their usual manner particularly when family members performed these chores for them. As well, these women were likely to resist receiving help from others (Boogard, 1984, 1985) As a pioneer in the field, Boogard (1984, 1985) was the first researcher to use qualitative methods to explore gender differences post Ml, and to capture women's subjective experience in the context of their roles and relationships. She concluded that health professionals need to be sensitive to the potential challenges and difficulties faced by women recovering from Ml and to incorporate knowledge of women's needs into rehabilitation programs and educational guidelines geared to facilitate optimal recovery in women. Although these recommendations were made over 15 years ago, few changes have been made in terms of developing programs of cardiac care that specifically attend to the recovery needs of women. Boogard has been cited extensively in much of the qualitative research that has emerged since her work was published. Focusing specifically on women, Dunn (1985) conducted a phenomenological study to examine their experience of Ml between 2 and 14 weeks following hospital discharge. The core theme that emerged from the data and captured the essence of women's experience of Ml was loss. In addition to reporting multiple losses, women also reported feelings of guilt in relation to giving up their household roles. Moreover, they had difficulty putting themselves first when conflict erupted between competing home and family demands, and their own health status and rehabilitation. Interestingly, women in this study did not identify physical rehabilitation as a means to gain control over their perceived sense of losses. Consequently, Dunn (1985) recommended that nursing care for women with Ml focus on interventions to address the grief and loss associated with Ml, increase social support, attend to patient and family education needs, and help women anticipate normal physical and psychological responses to Ml. As well, Dunn recommended the importance of developing cardiac rehabilitation programs that address the specific needs of women by focusing on support in adjunct to physical recovery. 25 Also using phenomenology, Bowers (1996), interviewed 10 women, ages 40-75 years, still hospitalized with Ml to understand how they made sense of this potentially life threatening event. Study findings demonstrated the emergence of nine common themes, several of which were consistent with Dunn's (1985) work and subsumed under Dunn's framework of loss (including illness awareness, feeling emotionally overwhelmed, and the sense of fear and worry). Given that women were located in the acute phase of their illness, they identified other significant themes including difficulty asking for and receiving help from others, and the need for information, and care and support. All of these factors were influenced by the quality of care they received by health providers and family and friends. Almost all of these women demonstrated an interest in participating in a supportive group process with other female cardiac patients undergoing a similar experience. In a study similar to Dunn's (1985), Benson, Arthur, and Rideout (1997) explored the experiences and concerns of 14 women, aged 39-87, within 6 months of their first Ml using phenomenological methods. Data was collected through the use of focus groups and open-ended questions as women were encouraged to tell their story of the events during and after Ml. Women identified four major factors that hindered their process of recovery from Ml. These included their lack of contact, support and validation from other women with heart disease, perceived gender differences in the treatment received from health professionals compared to male counterparts, aspects of health care delivery (including the lack of female specific health information and inadequate follow-up following hospital discharge) and role tensions with family members (Benson et al., 1997). Study participants also outlined specific support strategies thought to facilitate their recovery including greater instrumental support at home, follow-up phone calls from health professionals following hospital discharge, and access to a cardiac resource liaison within the community or participation in support group specifically for women. A major strength of this study was the valuable descriptions women provided about their Ml experiences and the identification of specific strategies aimed at supporting their recovery (Benson et al. 1997). A potential study limitation was the use of a sample of convenience where the age of women spanned almost 50 years. Given that the developmental and cohort differences for women in their forties and eighties vary greatly (see Bowers, 1996), researching a sample of participants closer in age, may provide more specific information regarding the recovery needs of younger and older women. LaCharity (1999) explored the experiences of 11 premenopausal women, ages 31-47 years, using in depth interviews, between 4 months and 11 years after receiving a diagnosis of CHD. Most of these women were mothers and all were working full-time. While study findings 26 demonstrated that premenopausal women shared many of the same concerns as postmenopausal women (see LaCharity, 1997), several themes unique to this younger group emerged from the interviews. More specifically, women had dramatic misconceptions about their potential risk for developing CHD based on the perception of various age related factors and their failure to recognize their symptoms as cardiac in nature. As well, women emphasized the importance of returning to paid employment based on motivating factors such as financial considerations and a sense of personal identity and meaning associated with their careers (LaCharity, 1999). This challenges previous research suggesting that women return to work less often than men following a significant cardiac event (see Boogard, 1984; Chirikos and Nickel, 1984). Women in these studies tended to be considerably older than those in the present research. Unlike their older cohorts, most study participants participated in organized cardiac rehabilitation programs and often requested greater access to evening classes in order to better accommodate their work schedules and allow for spousal assistance with child care. Consequently, some of these women reported raising small children which contributed to their difficulties in focusing on their health needs. Despite working full-time, women in this study also ascribed much of their identity to their household and caretaking responsibilities and tended to associate feelings of guilt and low self-esteem with a decreased ability to perform these roles (LaCharity, 1999). LaCharity (1999) also found that women reported significant concerns about returning to sexual activity due to the fear of recurring cardiac symptoms which often led to conflict with their male spouses. Moreover, women expressed dissatisfaction with the lack of sexual information and counselling received from their care providers despite feeling satisfied with the care and education surrounding their diagnosis. These findings are consistent with earlier research that suggests women tend to receive inadequate sexual counselling following Ml and are less likely to resume sexual activity, compared to men, following a cardiac event (Baggs & Karch, 1987; Boogard, 1984; Papadopoulos, Beaumont, Shelley, & Larrimore, 1983). While return to sexual activity has been a well established indicator of recovery from Ml in men, women have typically been excluded from this area of research. Finally, key factors influencing premenopausal women's ability to cope with their diagnosis included adjusting to positive lifestyle changes, 'bypassing negative emotions,' restructuring priorities including an emphasis on values and issues of 'importance,' and focusing on their perceived strengths including social and spiritual support and acknowledging limitations imposed by their illness. Participants acknowledged that accepting the CHD diagnosis led to getting back to as normal a life as possible (LaCharity, 1999). Based on these findings, LaCharity (1999) offered several important recommendations for addressing the needs of younger women with heart disease. These included comprehensive education initiatives for health professionals surrounding the expression and presentation of cardiac symptoms in women, aggressive risk factor education and assessment in women, rehabilitation programs that are sensitive to needs of younger working women and a more proactive involvement of nurses in making referrals to CRP's and sexual education and counselling for all aged women with cardiac illness. As a group, study participants strongly advocated for the formation of support groups for younger women to share similar concerns and experiences. LaCharity recommendations are fully supported in the current research. More recently, Arthur, Wright and Smith (2001) conducted an innovative study using participatory action research (PAR) to develop and implement community-based communication and psychoeducational support to women living with heart disease. Two groups of 7 and 9 women, between 46 and 76 years of age, who had a recent Ml, angina, coronary angioplasty, or bypass surgery, met monthly for 5 months as both recipients of support and co-participants in the research design process. Through group discussion, personal reflection and evaluation, these women collaborated with the researchers/group facilitators to help create a program they believed to be most beneficial to women living with heart disease. In general, Arthur et al. (2001) observed that women's 'expression of suffering,' was facilitated through the relationships established with each other and the group facilitators. Two common issues emerged from both groups including the stress of living with heart disease and associated family pressures such as coping with emotional reactions. In this sense, women felt better understood emotionally by their support group peers than by family and friends who they perceived to be protective and less comfortable with their expressed emotional pain. Secondly, women identified a deficit in both institutional and community based health care in the treatment of women with heart disease. Consequently, they expressed the need for greater emotional support from health professionals, disease and treatment information, and better communication with physicians. While women supported traditional cardiac rehabilitation programs, they felt their recovery would be enhanced in settings that better addressed their emotional and coping needs (Arthur et al. 2001). Arthur et al. concluded that women's primary rehabilitative need following a significant cardiac event may be support from other female heart patients and that these support needs may persist beyond the in-hospital phase of recovery or the typical duration of a CRP. This study demonstrated the value of providing a support intervention for women living with heart disease. Despite the short duration of the project, participants established a therapeutic bond with other participants and the facilitators that supported their expression of 28 emotional pain and may have been supportive in terms of living with this heart disease. Moreover, using a research methodology that invited women to collaborate as co-researchers encouraged their use of voice and dialogue thus resulting in a rich articulation of women's experiences and needs in this area. In this sense, Arthur et al.'s (2001) study was also important in terms of challenging dominant medical research paradigms which typically position researchers as 'expert' and historically have not recognized the specific needs of female participants. In terms of study limitations, little information was provided about what constituted the "program" that was developed. As well, few details were provided about the participants and the potential diversity of experience evident between patient groups (e.g. experiential differences between having surgery and a percutaneous cardiac intervention). Several qualitative researchers have used grounded theory to explore women's illness and recovery experiences. For example, Johnson and Morse (1990) examined the process of adjustment in 7 women and 7 men following their first Ml. Based on their study findings, Johnson and Morse developed a theory of adjustment focusing on the progression through four major stages including the initial threatened loss of control, coming to terms with the Ml, reestablishing control after Ml, and recovery. The overriding task of regaining a sense of control and the role of individual perceptions was considered fundamental to the adjustment process. Subthemes, reflecting strategies and responses directed towards regaining control at each stage were also identified. Aside from these major findings, Johnson and Morse (1990) reported that female participants tended to minimize their illness symptoms and return to their homemaker roles sooner than was deemed medically safe, thus perpetuating the belief that housework is not real work. Most of these women described feeling protective of their homemaker and mothering roles, and felt uncomfortable receiving support from family members. Consequently, they were careful not to interrupt or offset family routines in order to make personal lifestyle changes. In contrast, the majority of the men in the study considered the modification of their lifestyles to be a joint venture between themselves and their spouses. These findings are similar to other research in this area (see Boogard, 1984, 1985; Dunn, 1985). While Johnson and Morse's (1990) work was innovative and one of the earliest qualitative models exploring the Ml adjustment process, a few limitations should be noted. The degree to which gender differences, demographics or the social context of participants influenced adjustment was not clearly explored. As well, little discussion was provided about the possibility of there being an overlap or integration of stages within the adjustment process. Also using grounded theory, Fleury, Kimbrell, and Kruszewski (1995) proposed a 3 stage theory of women's recovery following an acute cardiac event, including Ml. Within a 29 support group format, 13 women between the ages of 42 and 78, met weekly for 9 months and discussed individual experiences and concerns related to their illness. The study was conducted as a mutually collaborative endeavor as women served as partners in the research process and identified topics for group meeting discussions. Fleury et al. (1995) identified 'healing' as the basic social psychological process that explained women's struggle through the uncertainty surrounding their cardiac event and as a means for negotiating personal transition, moving towards new levels of self-organization and personal growth, and creating positive health patterns. Moreover, they suggested that the process of healing comprised of three primary stages including surviving, originating, and patterning balance. The surviving stage consisted of five categories including the questioning of personal beliefs, reevaluating self, recognizing temporality, searching for meaning, and seeking meaningful connections with others. During this stage, women experienced intense physical and emotional disruption associated with changed views of self and of their world. In exploring how they had chosen to live their lives, women also questioned previously held values and beliefs. They examined their self-worth in the context of personal loss and a greater awareness of mortality. The search for meaning provided a framework to guide change and for understanding healing. Fundamental to women's efforts at seeking connection with others was the communication of feelings and stories related to cardiac experiences. In originating, women began to integrate aspects of the uncertainty and change associated with their illness by creating new patterns of living, defining self expectations, and perceiving the world. Fleury et al. (1995) identified four categories inherent to originating including seeking self, redefining priorities, finding strength, and building bridges. More specifically, women continued to reexamine previously held values and beliefs as they contemplated alternative definitions of self, possibilities for personal growth and changes in health behavior. As well, they discovered and began to trust their physical and emotional abilities which reflected their efforts at creating an environment supportive of their changing selves. In this stage, women confirmed that the support group format and mutually understanding relationships with other women served to meet their needs by providing a forum to discuss concerns, interpret their illness experiences, support personal growth and set goals for changes in health behavior. In patterning balance, the final stage of 'healing,' women attempted to move past the challenges and uncertainty related to their cardiac event and towards a new image of themselves including a sustainable lifestyle and health behavioral changes. The four categories associated with patterning balance included creating challenge, celebrating possibilities, 30 accepting self, and empowering others. More specifically, women reviewed personal goals and contemplated alternative approaches to living that focused on creating purpose and meaning in their lives beyond their illness. As part of more fully accepting themselves, women demonstrated self care and nurturance by respecting and believing in themselves and by remaining flexible in terms of self expectations. In this stage, women also expressed the hope that sharing their struggle and experience of healing would serve to guide and support other women in their process of healing. Fleury et al. (1995) concluded that an understanding of women's recovery process is essential to the development of cardiac rehabilitation interventions for women. She further suggests that the healing process is encouraged through assisting women to identify and access needed support throughout the rehabilitative process. More specifically, the study highlighted the importance of encouraging women to communicate their experiences and their needs for closeness, and to express feelings related to personal loss, fear and uncertainty in a safe environment such as in a women's support group. A major strength of Fleury et al.'s (1995) study is that women served as collaborating partners in the research process and were encouraged to identify topics for group meetings, provide feedback and clarification about emergent themes and the research process itself. The group dialogue allowed for individual questioning and critical reflection, hence directing the exploration of and more fully portraying the richness of women's experience. Moreover, the power of the support group format was evident as these women continued to meet long after data collection and analysis were complete. In a more recent study, Murray, O'Farrell and Huston (2000) used focus groups and a grounded theory framework to explore the experiences, feelings and needs of two groups of 8-10 women, younger than 60 years and older than 60 years, within the context of their heart disease during the pre-diagnosis, in-hospital and recovery period. Several themes were identified within both groups. For example, all participants reported difficulties recognizing their symptoms as cardiac in nature and almost a third of this group recounted being initially misdiagnosed by a physician. During the recovery period, both groups of women reported memory and sleep difficulties and felt overprotected by family members. Women over 60, many of whom had other health concerns, described a sense of 'resiliency' and their need to return to previous levels of functioning. In contrast, younger women construed their illness as a serious life disruption and focused on expressing emotions and seeking support. All participants felt that talking with other women who had heart disease would be beneficial (Murray et al., 2000). Based on these findings, Murray et al. (2000) highlighted the need for public education 31 campaigns that more effectively distributed current information on women's heart health; rehabilitation programs and research that address the emotional aspects women's illness experience; and a great availability of support and counselling services for partner's and/or family members. This was one of few studies in the literature that compared older and younger women and their needs and experiences following a significant cardiac event. Understanding these differences will help to develop recovery resources that are more relevant to different aged groups of women. A few researchers have conducted qualitative research specifically on elderly women's experience of heart disease. To illustrate, LaCharity (1997) used descriptive methods to gain further insight into the experiences of postmenopausal women following a diagnosis of heart disease. In depth interviews were conducted on 12 women, ranging in age between 53-76, between 4 months and 16 years after their diagnosis. Nine of these women had experienced Ml. Women discussed their diagnosis in terms physical and emotional effects, managing lifestyle changes, support systems, and their ability to adapt or cope with the diagnosis itself. More specifically, LaCharity (1997) found that participants expressed adverse emotions such as fear, towards the various unknowns (e.g. test results, recurring symptoms and further injury, and returning home) and guilt, when unable to fulfill their care provider roles and towards the perceived impact of their illness on their families. Women tended to manage lifestyle changes by adjusting their performance of household and employment duties and avoiding heavy work, dividing tasks into smaller steps, and learning to accept help from others. While participants mostly praised the support received from family and friends, they reported receiving mixed support from spouses and physicians. Dissatisfaction with spousal support focused on the absence of emotional expression, failure to discuss difficult issues, and a lack of participation in healthy lifestyle changes. Similarly, women perceived physician's lack of information as being unsupportive, and the provision of information as a measure of physician support. In contrast, an important component of the support women received from friends involved sharing their diagnosis and illness experiences, particularly with those also diagnosed with CHD (LaCharity, 1997). In general, LaCharity (1997) concluded that women with heart disease need greater support to facilitate their emotional adjustment. Consequently, she advocated for spousal education through the development of support groups to teach men about the seriousness of heart disease in women and how to better support their wives emotionally through communication enhancement training. LaCharity also suggested that helping women to explore spirituality and existential concerns related to mortality, and teaching them how to prioritize their health might help them move towards greater acceptance of their illness. All of these 32 recommendations have clear implications in terms of the development and delivery of ongoing therapeutic groups for women. This is clearly an area where Counselling psychologists can utilize their therapeutic and group facilitation skills to implement a patient wellness and care program. Using grounded theory, Helpard and Meagher-Stewart (1998) explored the meaning that elderly women attached to their illness, early convalescence at home, and social support needs following an acute cardiac event including Ml. Eight women, ranging in age from 61 and 87 years were interviewed at home using a semi-structured format, 2 and 4 weeks after hospital discharge. Findings from this study informed the development of a theoretical model of women's illness experience. They identified 'finding a voice' as the core variable and social process utilized by participants while struggling to find a 'new self and way of life following a cardiac event. As women attempted to balance traditional values associated with their homemaker roles and regain a sense of control and stability, they were faced with the difficult task of disentangling their voice from the voice of others (often referred to as a 'battle' or 'fight') while communicating their individual perceptions and lived experiences of illness (Helpard & Meagher-Stewart, 1998). Inherent in women's struggle for a new 'self,' participants experienced a complex blending and resolution of conflicts related to the impact that living with loss, conforming to traditional roles and societal expectations, and the need for respect and self-enhancement had on their sense of identity, obligation and enjoyment of life. In order to 'blend the gaps,' these women used various cognitive, behavioral, affective strategies and goal oriented plans to recreate a sense of stability in their lives and emerge with a 'new voice' more reflective of their values, experiences, and current needs and identity (Helpard & Meagher-Stewart, 1998). This suggests that individuals are changed through the experience of a life-threatening illness. Study findings also demonstrated that women's identification with their traditional homemaker and caregiver roles positively influenced their adaptation to early home convalescence, coping strategies, and sense of well-being. While resuming their roles allowed participants to exert personal control and regain a sense of stability and identity, this also represented an obstacle to following the rules of early convalescence, focusing on their individual needs and expressing their inner voice (Helpard & Meagher-Stewart, 1998). This role conflict for women has been previously documented in several studies (see Boogard, 1984; LaCharity, 1999; Johnson & Morse, 1990). Hawthorne (1993) suggests that women's 'otherness' orientation is responsible for the uniqueness of women's recovery and may be related to women's inability to deal openly with their suffering within the family. 33 In terms of social support, participants reported valuing the emotional support received from significant others as it positively influenced their sense of self esteem and personal growth following their illness event. Interestingly, over half of these women stated that they did not receive positive emotional support in their marriages. This finding supports LaCharity's (1997) recommendation for spousal education and communication training programs in order to better support women with heart disease. Based on these findings, Helpard and Meagher-Stewart (1998) emphasized the importance of providing 'individualized' information and care to elderly women with heart disease, greater awareness of the inherent value of establishing therapeutic relationships with elderly patients through nursing practice, and assessing the quality of women's social relationships as support in recovery. They also advocated for further research to better understand the impact of women's caregiving roles on illness recovery and in the development of methods to facilitate social connections and emotional support amongst elderly women with heart disease. A strength of this study was the researcher's conception of the illness experience as being transformative, fluid, and connected to the process of individual meaning making. Consequently, these descriptions are more useful in constructing the wholeness of an individual's experience in contrast to stage theories that are characterized by more clearly delineated movement through phases of recovery (see Johnson & Morse, 1990). Moreover, I resonated with women's task of finding their voice as an element of their illness and experience and which takes healing beyond the realm of physical recuperation. Lastly, Tobin (2000) proposed a stage theory of recovery in older women following Ml. Also using grounded theory, unstructured interviews were conducted with 12 women, ranging in age from 60-80 years, approximately 8 weeks following hospital discharge. Data analysis revealed the core variable in women's recovery process was 'getting back to normal' (or normal with some modifications) as participants envisioned that recovery was the 'resumption of their customary roles and responsibilities and making adjustments necessary to move on with life' (p. 17). Tobin suggested that these women progressed though four interrelated stages including accepting what has happened, establishing boundaries, making adjustments, and reestablishing normality. Although Tobin provides a description of the various recovery stages, she suggests the time needed to move through this process varies between individuals. The initial stage, accepting what has happened, comprised of two categories including confronting mortality and looking for a cause. During this acute stage of illness, women experienced a range of emotions in their attempts to come to terms with their Ml as they begin to realize the life threatening nature of the event and question why this has happened to them. 34 Tobin (2000) observed that women often returned to this stage when faced with physical or emotional setbacks. The second stage, establishing boundaries, depicted women's first encounter with the imposed limitations of Ml and initial efforts at managing their shaken confidence. This stage consisted of three categories including encountering limitations, accepting limitations, and reducing insecurities. More specifically, women had to determine what they could and could not do before establishing boundaries for activities. Accepting limitations imposed by their illness and compliancy in following activity boundaries were integral factors in the process of 'getting back to normal.' Tobin (2000) observed that women who accepted their limitations and were compliant with boundaries were optimistic about recovery, whereas others who struggled with accepting limitations tended to be pessimistic. Women used strategies such as seeking reassurance, acquiring information and practicing caution to help cope with their fear of recurrent symptoms and the resumption of daily activities. Tobin (2000) viewed the third stage, making adjustments, as the focal point in the recovery process as women either adjusted to the limitations imposed by their illness and reestablished a sense of normality in their lives or were unable to successfully make adjustments ('master this stage') thus impeding recovery. Three strategies were associated with making adjustments and included testing the waters, monitoring self, and weighing costs and benefits. In returning to activities, women graduated from simple to more complex tasks based on their level of comfort and pain. Tasks that could not be performed comfortably often led to lifestyle adjustments. Becoming more attuned to the needs of their bodies helped inform women's activity decisions as did evaluating whether lifestyle adjustments led to positive changes in their health status. Tobin suggested that the quality of support received from others in this stage was an influential factor in facilitating or inhibiting women's progress towards recovery. Women progressed to the fourth stage, reestablishing normality, after 'successfully mastering' stages one through three. Redefining normal and resuming independence were the essential tasks in this final stage. To progress in their recovery, women were faced with accepting unchangeable limitations imposed by their Ml and knowing their capabilities. Women reported accepting these changes more readily when they could adjust their self-expectations and not view their inability to perform certain tasks as limitations. In this sense, women redefined normal when they could return to previous activities with some modifications and when they felt less impacted by physical symptoms. Moreover, women's independence was marked by their ability to complete tasks and participate in chosen activities without fear or worry. The strength of Tobin's (2000) theory is that it attempts to capture the meaning of the Ml experience for menopausal women. As well, it highlights the importance of a progressive resumption of activity despite women's inclination to quickly resume their homemaker roles following hospital discharge (see Boogard, 1985; Dunn, 1985). Tobin also emphasizes that graduated learning needs to exist in each phase of the recovery process which has clear implications for cardiac care specific to women. A few limitations in Tobin's (2000) study were also noted. Given the critical role of 'acceptance' in the process of recovery, there was little discussion about how this was achieved by these women. As well, there was little elaboration on how social support was facilitative to promoting 'mastery' in the recovery stages. Summary of Literature In this chapter, I have reviewed qualitative studies that explored women's subjective experiences of recovery or adjustment to significant cardiac events including Ml. Several recurrent themes have emerged including descriptions of women's recovery as being a transformative process, fluid, and connected to individual meaning making (in contrast to descriptions based on narrow constructs evident in male dominated research); the identification of commonalities and differences between younger and older women with heart disease and specific implications for support needs and care resources; the continued need for education programs to better inform the public and health care professionals about cardiac illness in women; the unique phenomena of women's recovery which often include ongoing tensions between balancing care roles, needs for support, and compliance with convalescent guidelines; and women's need for greater emotional support during cardiac recovery including opportunities for contact with other women with heart disease. Moreover, the literature has highlighted the value of using qualitative methods to portray women's illness experiences and demonstrates a trend towards the inclusion of participants as collaborators in the research process, thereby addressing issues of power, evident in most medical research, and drawing upon women's voices and self/bodily knowledge within the context of a safe and supportive environment. Consequently, the current research uses a collaborative methodology to explore how women below the age of 55 years construct their experience of recovery following Ml. 36 CHAPTER THREE Methodology The act of writing, itself, is an evolution; from the Latin Volvere, volvi, volutum, to roll: The unrolling of the secret scroll, the thing suspected but not realized until present. (Winterson, 1995, p. 160) This qualitative study explored how women, under the age of 55 years, constructed their experience of recovery following myocardial infarction. A 6-week group process, including an introductory and follow-up session was conducted over the course of 3 months. Grounded in the practice of Action Research (AR) (Maguire, 1987) and Guided Autobiography (GA) (Birren & Deutchman, 1991), the individual and collective experiences of six participants were examined for emerging themes and structures that described how these women understood their recovery from a significant cardiac event. Research Design The primary focus of this study was to explore how women constructed their experience of recovery following Ml. A qualitative approach was used to guide the study and was selected as the most suitable means to construct and portray detailed accounts of women's recovery experiences from their own frame of reference and view of social reality (MacMillan & Schumacher, 1993). Denzin and Lincoln (1994) suggest that qualitative research is concerned with making sense of or interpreting phenomena based on the meanings and processes that people bring to their experience. Participants had the opportunity to further understand their recovery process through individual reflection and through the sharing of personal stories and experiences within a small group with other female survivors of Ml. Action Research Action research provided the methodology for addressing the research question: How do women, under the age of 55 years, construct their experience of recovery following a myocardial infarction? Guided autobiography was utilized as the research tool or method for gathering the research data. Action research has been a distinct form of inquiry since the 1940's when Lewin was credited with introducing the term through his work in social psychology, as he transferred the experimental approach of the natural sciences to the social sciences in order to understand critical social problems and bring about social action and change (Hart & Bond, 1995). Since Lewin, the practice of action research has widely evolved and has been used to explore issues in the areas of organizational change, community development, education, and nursing (Hart & Bond, 1995). 37 Action research is located under the umbrella of participative inquiry methodologies and has often been used interchangeably with terms such as 'participatory research,' 'participatory action research,' and 'co-operative inquiry.' Despite the various definitions and approaches to conducting action research that have emerged across disciplines, common principles tend to exist. For example, Heron (as cited in Reason, 1993) suggests that the participative worldview generally "see[s] human being[s] as co-creating their reality through participation: through their experience, their imagination and intuition, their thinking and their action" (p. 324). In this sense, action research is construed more as a philosophy and a process facilitating the creation of knowledge, rather than a specific methodology or design (McGuire, 1987). In my reading of the action research literature, I was most inspired by the collection of essays presented in Sumara and Carson's book Action Research as a Living Practice (1997) and drew upon their definition to guide the current study: Educational action research practices are particular ways of living and understanding that require more of the researcher than the 'application' of research methods. A lived practice that requires that the researcher not only investigate the subject at hand but, as well, provide some account of the way in which the investigation both shapes and is shaped by the investigator (Sumara & Carson, 1997, p. xiii). Sumara and Carson's definition acknowledges the importance of the living experience of the researcher and the production of self knowledge within her relationship to the research process. In this sense, the action researcher must: ...find ways in which to represent not only the conclusions of inquiry, but as well, the path of thinking and inquiry that had led to these conclusions. This does not mean merely reporting a set of methodologies that were followed. It means showing the connections between the researcher and the subject of the inquiry (Sumara & Carson, 1997, p. xvi). Typically, most action research approaches are comprised of three integrated research activities including action, investigation, and education (Maguire, 1987). Extensive collaboration and a mutual process of education is required between the researcher and the individuals within a community who, through shared discussion and interaction, develop skills in collecting, analyzing, and utilizing information related to the identified problem. Stuart (1998) suggests that action research projects often use a wide variety of types of data and methodologies for data analysis. In this research, women in various stages of recovery from Ml were identified as the community group under investigation. Although these women may not have been oppressed in 38 social, economic, or educational terms, female heart patients continue to be in general, subordinated by the medical profession. This is evident in the lack of research that specifically addresses various aspects of women's experience, information and availability of cardiac services and resources that are germane to women, and the gender bias evident in medical treatment (see Ayanian & Epstein, 1991; Beery, 1995). As action research enables marginalized groups to gain power and voice, women diagnosed with Ml had the opportunity to construct their own dialogue and their understanding of recovery, while contributing to the development of a program of research and care that may serve to support other women with heart disease. Participants played an active role in the research process, rather than acting as passive informants, as they engaged in decision making related to data collection methods, theme selection, group guidelines, curriculum modification, and session scheduling. Moreover, women's participation in the Guided Autobiography group also served to achieve the goals of Action Research (action, investigation, and education) by the very nature of the group process itself. More specifically, engaging in private and deep reflection on personally important historical and emotional events evoked greater awareness for the individual and for other group members as experiences and stories were constructed and shared within the group. Emerging from the experience of sharing personal stories also came the expression of voice, development of trust and provision of support to others, creation of group membership, information exchange and problem-solving, building of friendships, the development of coping strategies, goal setting and behavioral change. Procedures The research was conducted at the YWCA, a women's community service agency, located in downtown Vancouver, BC, where I currently rent office space for my private counselling practice. My decision to utilize this setting was based on convenient accessibility of the location and proximity to public transportation, as well as the YWCA's longstanding mission to foster social change through public education to improve the status of women. Approval for this study was obtained through the University of British Columbia ethics committee following acceptance of the research proposal. Criteria for Study Inclusion. McMillan and Schumacher (1993) describe purposeful sampling as seeking information rich key informants for in-depth study. Similarly, to be eligible for participation in this study, volunteer women were required to meet all of the following inclusion criteria: (a) diagnosed with Ml within the past 36 months, (b) between the ages of 30 and 55 years, (c) medically well enough to attend the group, (d) possessed unimpaired cognitive functioning with an ability to 0 39 understand the nature of the study, (e) fluent speakers and writers of English, (f) demonstrated a willingness and ability to commit to the activities required for participation in the Guided Autobiographical group format (e.g. interested in group process, attend all group meetings, complete written assignments and share writing within the group) and (g) provided informed consent for participation in the study. Birren and Deutchman (1991) emphasize that Guided Autobiography groups are not considered to be 'therapy.' Consequently, this research group was not appropriate for women who were looking for supportive therapy. Although none of the women I interviewed for the study indicated they were looking for supportive therapy, I was prepared to direct those who were to more suitable resources if necessary, Participant Recruitment. The process of recruiting volunteer research participants took approximately 8 weeks as they were located through three primary sources including the cardiac rehabilitation programs at two local hospitals and a radio interview with a local journalist who highlighted the nature of the study thus encouraging women to volunteer. Five women were recruited through cardiac rehabilitation programs and one woman volunteered as a result of the radio interview. Information letters (see Appendix A) advertising the study were distributed to several community locations including Jewish Family Services, The YWCA, The Heart and Stroke Foundation, and The University of British Columbia Nursing Faculty, but did not attract potential research participants. The following steps more clearly outline the process of recruitment: Hospital 1 • Contacted 4 cardiologists, a cardiac social worker, cardiac psychologist, and cardiac research coordinator to discuss study and provide participant information letters to forward to potential participants. • Contacted Medical Director of the cardiac rehabilitation program to discuss study and request endorsement of study. • Adapted study participant information letter to fit with Medical Director's letter of endorsement (see Appendix B). Revised letter printed on hospital letter head. • Consulted with two primary nurses in CRP who have direct contact with all enrolled participants. Both nurses indicated their interest in the study and willingly agreed to forward the information letter to women that fit the study inclusion criteria. Potential participants provided permission to have the researcher contact them directly. • Nurses also reviewed previous CRP patient files and mailed information letters to potential participants. Women either contacted the researcher or received follow-up 40 telephone contact from clinic clerk and provided permission to have researcher contact them directly to further discuss the study. • Contacted women for brief telephone interview (see Appendix C). Four women were recruited through this program. Hospital 2 • Discussed study with director of CRP who readily expressed his interest in the research. Received name of program coordinator/nurse to contact regarding recruitment. • Consulted with rehabilitation program coordinator/nurse who agreed to forward the study information letter to current and former program participants who fit the inclusion criteria. • Program coordinator forwarded names of potential participants including contact information to the researcher. Contacted women for brief telephone interview (see Appendix C). One woman was recruited through this program. Radio Interview • Contacted local radio journalist to discuss the project and to request an interview to facilitate participant recruitment amongst the general public. • Journalist conducted a brief interview with the researcher focusing on the research purpose, study requirements and researcher contact information. The interview was aired the following week. One woman was recruited for the study as a result of the interview (K. Gretsinger, CBC Radio, September, 12, 2003). Participants. In total, 13 women demonstrated an interest in obtaining more information about participating in the study. Of these individuals, 6 women met the criteria for study inclusion and agreed to participate in the research. Reasons for not participating in the study included women either living out of town or not being able to commit to the time requirements, often due to demanding work schedules. At the onset of the study, the participants comprised 6 volunteer women. One participant decided to withdraw from the research following the second week. In follow-up telephone contact, she described having difficulty managing current levels of anxiety and felt overwhelmed participating in the group. She also reported struggling with the writing assignments. Consequently, five women remained in the study as participants. This number fits closely with Birren and Deutchman's (1991) recommendation of limiting enrollment in Guided Autobiographical groups to six members. 41 Description of Participants. While the age of participants in this study was relatively homogeneous, their individual health circumstances and life situations were considerably varied. More specifically, six European North American and one Middle Eastern participant was between 48 and 53 years of age and reported having a single Ml which for most had occurred within 8 months of participating in the study. While some participants reported additional health concerns, all of the women reported varying degrees of cardiac symptomology. Most of the women had undergone diagnostic cardiac procedures and all but one had been enrolled in cardiac rehabilitation (see Appendix H). The following descriptions outline a brief profile of each participant: Bev. Bev was most recently diagnosed with Ml approximately two and a half months before the onset of the research group. At 53 years of age, she described herself as happily married with two adult children, both of whom have recently returned home to live. Family and friends play a central role in Bev's life. While she acquired a college education, Bev chose stay home with her children until they were much older before returning to work. In the last several years, she has been involved in various entrepreneurial ventures. Bev reported other health concerns including high blood pressure and weight control. Following her Ml, her angiography procedure was positive requiring angioplasty and the insertion of stents. Since her Ml, she has experienced infrequent cardiac symptoms. She self-referred to a cardiac rehabilitation program and reported having difficulty relating to the other participants who were much older. She is currently on cardiac medications. While Bev identified having a very strong familial and social support network, she was motivated to join the study because she felt it would be "valuable talking with other younger women with Ml." Helen. Helen reported having her Ml 3 years ago at the age of 48. She identified having no cardiac risk factors outside of family history and described herself as always being healthy and physically active. Helen's angiogram revealed normal coronary arteries and she has little understanding of why she had a Ml. She experiences infrequent and vague cardiac symptoms and continues to take cardiac medication. Helen did not attend cardiac rehabilitation stating that she was already leading a healthy lifestyle when she had her Ml. Helen was divorced at age 32 and has one daughter from her marriage who is 22 years-old and who lives at home. She is currently not partnered. Helen has a graduate education and currently divides her time as a classroom teacher and a fine arts coordinator in her school district. She described having a very full life comprised of a successful and busy career, various 42 artistic and musical hobbies, and her social network. Helen joined the research group hoping to experience a "greater understanding of her experience" and a "sense of group collaboration in meeting with other women close to her age who have had Ml." Arlene. Arlene, at age 52 years, had her Ml 7 months prior to the onset of the research group. She believes that it occurred as a result of complications from her diabetes (Type I), stating that she has never experienced chest pain. Arlene experienced heart failure following her Ml and has struggled with other health concerns including fibromyalgia, and previously Guillain-Barre syndrome. She underwent cardiac catherization with angioplasty and stents. Arlene has found that participating in a diabetes support group, and more recently cardiac rehabilitation, to be highly beneficial. Arlene was previously married and divorced in her twenties. She has two adult daughters and grandchildren. While currently not partnered, she reports having solid familial and social support. Arlene has been highly successful as an entrepreneur; she is currently employed as an administrative assistant. Her motivation for joining the study was to "gain knowledge and talk with other women who have had Ml." Sarah. Sarah is a 48 year old woman of Persian decent. She emigrated from her country of origin 5 years ago and is currently upgrading her education at a local college. Sarah experienced her Ml 5 months prior to the beginning of the study, while commuting on public transportation. She described her experience of "not being helped" by other commuters and the paramedics as being more traumatic than her actual heart attack. Sarah underwent cardiac catherization requiring angioplasty and stents. She frequently experiences angina requiring Nitroglycerin, and reports other health concerns including depression, high cholesterol, and lupus. Sarah was recently enrolled in cardiac rehabilitation and currently sees a cardiac psychologist. She reports having little social support outside of living with a very supportive family friend. Moreover, she has no family living locally. Sarah agreed to participate in the study based on her "desire and commitment to help others with heart disease" and "her need to talk about her [Ml] experience." Sally. At 48 years of age, Sally had her Ml 4 months prior to participating in the research group. She reported previous health problems including pericarditis, peripheral vascular disease, and arthritis. While hospitalized with Ml, Sally underwent cardiac catherization requiring angioplasty and stents. She currently experiences cardiac symptoms including chest heaviness and is managing ongoing depression. Sally is enrolled in a cardiac rehabilitation program which she has found beneficial. While currently not working, Sally is a hairdresser and 43 has been employed in retail business. She describes having some familial and social support. Her interest in participating in the study stemmed from her need for "support and not being alone" and to contribute to "information for the medical community." Margaret. Margaret reported having her Ml a year and a half earlier at age 48. She was adamant about not having any cardiac risk factors outside of being a long standing and heavy smoker. She had been hospitalized for 9 days and had undergone a cardiac catherization which did not demonstrate the presence of heart disease. During the procedure, she had a coronary spasm which was thought to be the cause of her Ml as well as a dangerous arrhythmia. Margaret participated in cardiac rehabilitation but did not complete the program. She is currently working at several part-time jobs and lives alone with her three cats. She felt participating in the study would provide her with much needed support and information about her Ml experience. Guided Autobiography Guided Autobiography is defined as a "semi-structured, topical, group approach to life review" that facilitates an understanding of how past life experiences and events have evolved over the course of one's lifetime (deVries, Birren, Deutchman, 1995, p. 166). Expanding from life review, Birren developed Guided Autobiography in his work with older adults to promote successful adaptation to aging (Birren & Hedlund, 1987). More recently, Birren and Deutchman (1991) recommend using Guided Autobiography with other groups facing significant life transitions, disability, health concerns, and for those seeking greater self understanding and acceptance. The process of Guided Autobiography has two stages. Groups typically include five or six participants and a group facilitator, with meetings typically scheduled for a minimum of two hours over varied durations (Birren & Deutchman, 1991). Each participant is required to write a two-page autobiographical story in 'solitude' on a pre-selected life theme and then read their story within the context of the small confidential group setting. After each reading, group members are encouraged to share personal reactions, impressions, thoughts or feelings evoked by listening to other member's stories. Birren and Deutchman suggest that the 'developmental exchange' or mutual sharing of personally important and meaningful information and experiences is a powerful feature of the Guided Autobiography process. The nine life themes explored in Guided Autobiography represent issues central to the life course and may elicit powerful recollections of experience and related feelings. These include: a) the history of a major branching point in one's life, b) family history, c) career or major life work, d) the role of money in one's life, e) health and body image, f) loves and hates in one's life, g) sexual identity, sex roles, and sexual experiences, h) experiences of death, and 4 4 ideas about dying and other losses, and i) beliefs and values that provide meaning in life (Birren, 1987). Birren and Deutchman (1991) suggest that alternative themes may be added depending on the purpose of the group. In conjunction with each life theme, specific 'sensitizing questions' are distributed to participants to promote recall and reflection, and to further clarify the importance of significant life experiences. In this sense, the Guided Autobiography process encourages 'creative and divergent thinking' about one's life (deVries, Birren & Deutchman, 1995). While Birren and Deutchman (1991) emphasize that Guided Autobiography is not designed to be used as formal therapy, positive outcomes have been observed among participants in both research and practice. These have included a sense of increased personal power and importance, recognition of past adaptive strategies and application to current needs and problems, reconciliation with the past and resolution of past resentments and negative feelings, resurgence of interest in past activities or hobbies, development of friendships with other group members, greater sense of meaning in life, and the ability to face the end of life with a feeling that one has contributed to the world (Birren & Birren, 1996, p. 288). Although the purpose of using Guided Autobiography in the current study was to explore how younger women construct their recovery following Ml, it was the researcher's hope that participants would also benefit from participating in the group process with other female cardiac patients particularly given the physical, mental, and emotional upheaval often associated with experiencing a significant cardiac event. For the purposes of this study, Birren and Deutchman's (1991) GA theme format was adapted to more suitably explore aspects of women's experience of recovery following Ml. Accordingly, guiding themes and sensitizing questions relevant to this group were developed. Due to the emergent nature of participatory action research, the final grouping of themes and questions did not emerge without a collaborative discussion with study participants during the second group meeting. At this time, participants were asked to review the proposed themes and determine whether these were suitable and relevant to the group. While a few women suggested that the issue of "money" be added as a theme, this topic was subsumed under an already existing theme - 'Major Life Work." Revised Guided Autobiographical Themes. Based on my understanding of the cardiac literature and experience working as a cardiac health professional and clinical counsellor, the primary facilitator's experience conducting Guided Autobiography and Life Review groups, and the research participant's discussion and input, the final selection of revised GA themes included the following (see Appendix F for descriptions of themes and sensitizing questions): 45 Theme 1: Your Health and Experience of Ml and Recovery from Ml Theme 2: Your Major Life Work and Recovery from Ml Theme 3: Significant Relationships and Recovery from Ml Theme 4: Self Care: Dealing with Stress and Personal Needs during Recovery from Ml Theme 5: Your Experiences and Ideas about Death and Recovery from Ml Theme 6: A Personal Story of My Recovery from Ml Data Sources The sources of data in this study included telephone and initial interviews with participants, women's written accounts of the six weekly GA themes, video taped accounts of women's participation in the GA group, and the researcher's field notes and journal entries. A more detailed account of the data sources will be further discussed below. The first source of data consisted of a brief telephone interview (see Appendix C) and initial interview (see Appendix D) that were conducted with each potential participant prior to beginning the group. The purpose of these interviews was to describe the research project and clarify requirements for participation, screen women for study eligibility, answer questions about the research, outline confidentiality and obtain informed consent, and begin developing rapport with each participant. Relevant demographic and health information was also obtained. The interviews were comprised of both open and close-ended questions. The second source of data was participant's written autobiographical stories based on the adapted GA themes. Using Birren and Deutchman's (1991) GA guidelines, the group was instructed to prepare two pages on each theme to be read during the next meeting. Participant's writings were collected after each group meeting and then photocopied and returned the following week. The third data source included video taped accounts of women's participation in the Guided Autobiography group. Adler and Adler (1994) suggests that videotaping data offers several advantages including the ability to 'freeze' interactions for reexamination, review multiple observers, and capture behavioral nuances. In contrast, Mishler (1986, p.48) emphasizes that "the initial record-audio or videotape or running observation—is itself only a partial representation of what 'actually' occurred." While my preference was to use the videotape format to document participant's linguistic and nonlinguistic communication, and to further enhance my understanding of group process, it was important to discuss recording options with participants. 46 Consequently, women were asked, during the initial interview and again during the first group meeting, whether they had any concerns about being video taped during the research sessions. The group collectively agreed to be video taped as well as audio taped (as back-up). Lastly, my own field notes and journal entries, recorded before, during, and after the completion of the fieldwork, served as the fourth method of data collection. Richardson (1994) recommends that four categories be considered when writing field notes in order to 'nurture the researcher's voice' (p. 526). These categories include: 1) observational notes to document concrete and detailed accounts of process and content; 2) methodological notes to record the details of how to collect 'data,' methodological concerns, issues, questions, and information; 3) theoretical notes including hunches, hypotheses, and critiques of thinking, actions, observations, and alternative explanations, and finally, 4) personal notes to explore uncensored feelings towards content and process issues, relationships with participants, doubts, and satisfactions which can lead to better understanding how these affect claims to knowledge. My personal notes took place in the form of a research journal. Richardson (1994) suggests that the research journal becomes "a historical record for writing a narrative of the self." This journal was created while developing the research proposal and has been used to record descriptive and reflective notes related to key excerpts from my readings; biases, values and expectations that I have brought to the project; ideas, questions and concerns about methodological and theoretical issues; notes emerging from conversations and meetings with various individuals who have influenced my thinking about this research, and personal reflections on the process of writing a doctoral dissertation and the meaning that I have attached to this life work. Format of Conducting the Guided Autobiography Group The following format outlines the steps that were followed in conducting the GA research group with women recovering from Ml and has been adapted from Birren and Deutchman's (1991) comprehensive guide to leading GA groups with older adults. Phase I Initial contact with potential participants was made when women interested in the study called me directly or when I contacted them after receiving permission from one of the CRP nurses. During this Brief Telephone Interview, I discussed my background and research interests and provided information about the purpose of the study and participant requirements; asked screening questions to determine study eligibility; gathered demographic and health information; and scheduled (or not) a time to meet each woman for an initial interview if they were interested in participating in the study and met preliminary study requirements. It was also an opportunity to begin to develop 47 rapport with the women that later became research participants. Most of the women that I spoke to recounted, often in great detail, their illness story of Ml as one of the first things we discussed. The urgency and detail with which women told these stories was striking. Phase II During the initial interviews, I met with each potential participant in a location that was convenient for them including coffee shops close to their home, school, and rehabilitation program, a place of employment and in one woman's home. During the initial interview, I provided women with a more comprehensive description of the study, continued to ask specific questions pertaining to study eligibility and group participation, and discussed and/or obtained informed consent (see Appendix E). I also inquired as to women's reasons for participating in the study and asked them to define the term "recovery." These latter questions were helpful in better understanding these women beyond their demographics and health information. The initial interview also provided an opportunity to further build rapport with participants, as women continued to recount their illness stories of Ml, and to determine their time schedules and availability for participation. Phase III After recruiting six women for the research group, I scheduled our research meeting night (Mondays from 7 - 9:30 pm) based on the group member's availability; arranged weekly meeting space at the YWCA; arranged to borrow audiovisual equipment from the university to facilitate data collection; and began to meet with the primary group facilitator. The facilitator was highly recommended by one of my dissertation committee members and after several discussions about the project she agreed to facilitate the research group for a nominal fee. Her background in both counselling and journalism, and her extensive experience conducting Guided Autobiography and Life Review groups made her an ideal candidate to facilitate the group. While she did not have expertise in the area of cardiac illness, she met all of Birren and Cochran's (2001) recommended qualifications for GA leaders and co-leaders including experience teaching or leading small groups, well developed empathy skills, organized and flexible, familiar with the GA format (a former GA group participant), a good sense of humor, humble and kind, and committed and interested in the nature of the group. During the preliminary meetings with the facilitator, we pooled our collective knowledge and began to develop an adapted version of the GA format relevant to the 48 research question and to the research participants. Consequently, we corresponded several times in person and by telephone before beginning the group. As well, we met weekly after the research group started to debrief sessions and to plan for the next meeting. During these meetings, the GA format was frequently revised to adjust to the group's development and to stay aligned with the research question. Phase IV During the Introductory Session (Week 1), research participants, the facilitator and I met as a group for the first time. This first session focused on reiterating the purpose of the study, discussing administrative details including meeting times and group space, developing group guidelines and ground rules, describing the purpose and process of participating in a Guided Autobiography group, and participant and facilitator introductions. As well, guidelines for writing Autobiographical accounts and the first theme and sensitizing questions were distributed to the group for the following week. Phase V The next six weekly meetings (Sessions 2-7) comprised the Guided Autobiography group. The general format of these sessions included: a group check-in and announcements, participant's readings of their GA theme (approximately 10-15 minutes), group feedback after each reading (approximately 5-10 minutes), and a brief discussion with accompanying hand-outs of the next week's theme and sensitizing questions. A break was scheduled into each meeting and refreshments were provided. Most sessions ended with a brief check-out. While the group was organized to run from mid November to late December, participants opted for taking 2 week break prior to Christmas to better manage the demands of the holiday season. Participants also felt that this break would give them time to better absorb the GA experience to date and to reflect on the remaining themes. Women agreed to resume the research group in early January for another two GA sessions. Phase VI A follow-up session (Session 8) was conducted almost 8 weeks following the completion of the GA group. All but one of the participants attended this session. One woman was absent due to concurrent academic responsibilities. During this session, I shared preliminary observations and understandings of women's stories and emergent patterns, meanings and themes, and encouraged participants to clarify or add to these as necessary. As well, I asked the group to respond to specific questions that focused on assessing the trustworthiness of the data 49 (see Appendix G) and to provide recommendations for the current study and for conducting future GA groups for women recovering from Ml. Participants were encouraged to speak openly about their reactions to the findings and to give their honest feedback in response to the validation questions. While I suggested that women could submit anonymous written feedback, in addition to participating in the group discussion, none of the participants chose to do this. I have included participant feedback in the forthcoming discussion on establishing trustworthiness. Data Analysis Data analysis occurred concurrently with data collection and involved several stages including: a review of the data obtained through participant screening interviews; content analysis of participant's written autobiographies; thematic analysis of the video taped group sessions; a participant review of the researcher identified themes, and an in-dwelling of my field notes and research journal entries. These will be described in greater detail in the following discussion. Review of Initial Interviews. Data obtained from the brief telephone and initial interviews were reviewed several times following each participant contact and then partially compiled in a table format sorted by demographic and health information. This data provided the basis for developing brief participant profiles, thereby providing the reader with a contextual background to better understand women's recovery experiences (see Appendix H). Content Analysis. At the end of the six-week GA group, research participants collectively submitted approximately 30 autobiographies related to their Ml recovery experiences. Birren and Hedlund (1987) suggest that content analysis is a useful means of analyzing autobiographical research data both in terms of individual analysis and comparisons across participants. Consequently, a separate content analysis following the procedures outlined by Berg (1995) was conducted on participant's recovery stories for each autobiographical theme. More specifically, following each group meeting, I began the process of content immersion by reviewing each participant's autobiography several times. By reading these stories repeatedly, I was able to immerse myself in the data and become more familiar with women's described experiences. I then identified and highlighted sections of the original text that appeared relevant to the research question. Highlighted sections of text were then reviewed and units of analysis were also identified as affect, patterns of behavior, experience and meaning, and significant 50 participant statements reflecting women's constructions of their recovery. These were then extracted from the text and organized into categories that appeared similar in meaning. For example, emerging from the significant relationships theme, women spoke to their painful experiences of terminated relationships, unresolved family conflict, and unfilled dreams. These meaning units led to emergent category of loss. Approximately five to seven categories of analysis emerged in each GA theme and provided the basis for my interpretations following each research session. Following the completion of the GA group, the aggregate categories of analysis were subjected to thematic review across research sessions and organized into the formulation of six main themes which were mostly common to participants. To ensure that the categories of experience and meanings and the identified recovery themes were representative of the participant's experiences they were continually evaluated in light of the original autobiographical accounts and other data sources, as in a constant comparative format. I presented my preliminary analysis of the GA stories and main themes to participants for feedback in the follow-up session. (Given that a completed analysis of the research data had not been completed at the time of the follow-up group, I mailed each participant copies of the completed analysis for review and clarification approximately 2 months later). Videotape Analysis. In this stage, videotapes from each of the GA sessions were reviewed following each research meeting. The benefit of utilizing a videotape format allowed for the reexamination of verbal and non-verbal communication amongst participants and to gain further understanding of how women construct their recovery experiences. Following the initial review of each videotape, each session was transcribed verbatim in order to have a hard copy of the research session to read and reference during subsequent viewings and from which to extract sections of individual and group dialogue for analysis. Using the frequent 'viewing and listening' method, I reviewed each videotape twice while paying particular attention to women's individual stories, group feedback and dialogue, group stories, as well as group process. While viewing and listening to the videotapes, I recorded observations, hunches, questions and personal reflections in the form of research notes. As well, I documented issues and/or patterns or themes of experience and meaning and significant statements that emerged from each session. Following each video tape viewing and listening, I in-dwelled on the content of the video taped sessions and my observations before returning to my research notes to document or clarify additional impressions. After completing the above process, relevant patterns, themes, meanings and participant statements were also organized into categories (often previously identified from the analysis of women's autobiographies) that represented women's individual and collective constructions of recovery. These findings were integrated into the existing content analysis of women's GA stories. Participant Review. The participant review process took place during the follow-session approximately 8-weeks following the completion of the GA group. The purpose of the session was to ensure that the study findings accurately reflected and were relevant to the participant's experiences and understanding of their recovery experience. During this session, participants were asked to provide the researcher with feedback, clarification, and additional information if necessary in response to the preliminary findings (e.g. issues, meanings, and identified themes that emerged from the primary data sources). Participants were also asked to evaluate their experience of participating in the GA group by answering various specific questions (see Appendix G). In addition, a summary of the researcher's analysis of the weekly themes were compiled and mailed to each participant for feedback following the analysis of the research data. Women were asked to mail their feedback back to the researcher using the self-addressed stamped envelope. Three of the five participants provided feedback and acknowledged that the weekly themes and interpretations resonated with their recovery experiences. Field Notes and Research Journal. Finally, an ongoing and iterative in-dwelling of my own journal entries and field notes were helpful in terms of further making sense of and contributing to the analysis of the research data. To facilitate this in-dwelling, I engaged in an ongoing process of reflexive inquiry. Schwant (1997) suggests that reflexivity is a process of critical self-reflection to explicate and articulate biases and assumptions and to understand how they impact on the research process. While I wrote extensive journal and field notes throughout all stages of the study, I found it particularly helpful writing field notes following each research session and after my weekly debriefing sessions with the group facilitator and research advisor. In these notes I explored several critical questions in greater depth including: how do my roles and interests as a researcher, counsellor, and health-care professional (and feminist and white woman) weave into the research? What are my unfolding assumptions? What have I taken for granted? What do I expect to find? What resonates with me? What makes me feel uncomfortable? How does this phenomenon work? How might this phenomenon be different for another group of individuals? What are the explicit/implicit rules? How would I experience this phenomenon differently if I was another age, gender, and ethnicity? What language was used by participants to describe their experience and what does it mean? Who has the power in this research experience and in participants' personal experiences? 52 Other methods for promoting self-reflexivity in this study included a) dialoguing with members of my dissertation committee, other qualitative researchers, and colleagues within the area of counselling and health-care, and other female cardiac patients; and b) the reading of critical texts that explore qualitative methodology in terms of issues related to power and voice, representation of the research text, and of methodological concerns (see Hertz, 1997; Steier, 1991). By engaging in the iterative process of reading, reflecting, and writing, I was better able to report how I have interacted with the research and how my position impacted the research process and findings. In doing so, I created greater accountability as a researcher and remain true to how I represented women's recovery experiences. Establishing Trustworthiness In qualitative research, issues of validity are typically addressed through establishing trustworthiness as a means of assessing the merit and quality of the research results. In this sense, qualitative researchers must persuade their audiences that their findings are worthy of attention (Lincoln and Guba, 1985). I will briefly outline the four criteria that were used for assessing trustworthiness in this study. (The reader may want to review the validity questions as outlined in Appendix G). Catalytic validity measures whether the research experience acted as a catalyst for personal growth and/or change in participants. Lather (1991) suggests that research possessing catalytic validity impacts those it studies in terms of gaining greater self knowledge and a greater understanding of the world in order to be able to transform it. The strategy for addressing this criterion was through conducting a member-check (Lincoln & Guba, 1985) during the follow-up session. Lincoln and Guba suggest that member-checks provide participants with the opportunity to clarify their intentions, correct errors and challenge interpretations, volunteer additional information, and assess the overall accuracy of the data and researcher's interpretations. Participants were asked whether or not the research experience was beneficial in terms of facilitating greater self awareness and/or change within their lives. Other questions were aimed at providing women with the opportunity to critique and evaluate their experience as research participants (e.g. What was helpful about this experience?; What would have made this experience more beneficial?). During the follow-up session, all members (participants) reported that their participation in the research project helped to facilitate the development of personal awareness and/or growth and change in their lives. As one woman noted: 53 I found it very beneficial. I also found it therapeutic because I think talking about it helps me heal. I think it was really important taking the time to actually go over what happened and see how we dealt with it and how our families dealt with it. Another participant concurred, I think it was therapeutic too. I liked the opportunity to think about my life in relationship to those questions and themes and doing an in depth check into what you want, where you're going, what seems to be really important and what doesn't really matter. I don't get as agitated in my job... I feel much more easy going about things that aren't happening as fast as I'd like them to. A third participant commented on the benefit of "sharing and listening to other people's experiences and just reflecting on what really happened to me." Moreover, she suggested that participating in the group has helped her "learn how to pace myself better, and take time for me." Pragmatic value measures the extent to which the research will be useful to others (including other female heart patients as well as health care providers). Although this cannot be predetermined, attention can be given to explicating researcher values and beliefs, delineating procedural steps and the interpretative process, and allowing others to assess the trustworthiness of the research. A member-check was conducted to assess this criterion. All members agreed that the preliminary study findings and the process of conducting the GA group could be useful to other female heart patients and to health professionals depending on "how the information is going to be put out into the public." One woman suggested, "if it's read or taught or talked about, and I think it needs to be talked about more, then I definitely think it will be helpful. Send it to Oprah." Another participant described her efforts in trying to find cardiac self-recovery reading material that she could relate to as a female heart patient, "I read some stories but they didn't really resonate, they were mostly stories about men's heart attacks." She suggested that a book could be written for women based on the findings of the current research. A third participant alluded to the benefits of illness prevention by conducting similar groups with women, "emotional health, or lack of it, is probably one of the issues that women tend to deal with, which might be a preventative thing." Krefting (1991) suggests that peer examination involves discussing the research process and findings with colleagues familiar with qualitative methods. At different times throughout the study, I discussed various aspects of the research process and study findings with other colleagues and qualitative researchers, several of whom were also familiar with conducting guided autobiography. I also consulted with three health professionals (including two cardiac care nurses and one physician) who served as peer reviewers in this validity check. All 54 three peer reviewers acknowledged the value of providing female cardiac patients with emotional support following recovery. One nurse stated "It was wonderful that these women had a private forum to talk about their feelings." As well, reviewers acknowledged that most medical resources deal with the "physical" and expressed their frustrations with the lack of time that they typically have to interact with patients despite knowing that they are often dealing with issues seemingly unrelated to their illness. Peer reviewers also felt that the data generated by the study was beneficial to other cardiac patients (both women and men). Resonance evaluates whether "the text generated by the researcher is fitting and truthful to participant's experiences?" Ellis (1997) stated that "a story's validity can be judged by whether it evokes in readers a feeling that the experience described is authentic and lifelike, believable and possible" (p. 133). To assess this criterion, I conducted a member-check to determine whether participants were able to recognize the described experiences and findings as their own. Secondly, peer reviewers were consulted to comment on the categories and themes developed out of the data and how these fit into their understanding of women's recovery processes. In general, member's preliminary reports suggested that they recognized in the data analysis the described experiences and findings as their own. One woman stated, "I was struck with how you were able to capture what we were trying to say." Members' suggestions reiterated information that was already evident in existing thematic categories. As well, members resonated with the underlying themes and reflected their stories of recovery. Similarly, peer reviewers also resonated with the research session interpretations as well as the six emergent recovery themes. One cardiac nurse stated that "the analyses made sense and felt appropriate to what she knew of women's recovery stories." She suggested that while she was "working with the physical (the easy part) the emotions and stories of their lives, which I was privy to, would often keep me pondering on many levels throughout the day, weeks and they still do." Another reviewer suggested that "The sum of women's life parts seemed to influence, if not determine, their perception of their Ml experience." Moreover, she suggested that in cardiac rehabilitation, "We do not have the luxury (time or place) to explore the personal meaning of these experiences." All reviewers spoke to the lack of time available in dealing with patient concerns that are not primarily about physical health. Finally, participatory validity may be defined as the successful provision of necessary factors (e.g. safety, respect, and group cohesion) for encouraging participation and a sense of inclusion amongst group members. The principles of action research and Guided Autobiography are both complimentary in terms of encouraging individual and group participation. Simply 55 stated, participants were asked, "Did the research experience facilitate individual and group participation?" Member-checking was used to assess this criterion. Through the member-check procedures, all participants reported that they had felt encouraged to participate both individually and as a member of the research group. One woman confirmed, "We definitely felt safe, we wouldn't be here if we didn't feel safe." Similarly, another participant stated, "You both encouraged our conversation and we encouraged the conversation from each other, and the questions were very good, directed questions for getting us to talk about what mattered." Lastly, a third woman stated: There was active listening and there was time for reflection and I felt a great deal of empathy. While someone else's story wasn't our story, there was still that caring which was evident to me every time. So I thought that was very good. As research, this group fulfilled the four criteria used for assessing trustworthiness as determined by member checks and peer reviewers. Women's feedback also demonstrated that that participating in the group was a highly supportive and therapeutic recovery experience. 56 CHAPTER FOUR Results Writing about one's life and sharing it with others is a high point of human experience...(Birren & Deutchman, 1991, p. ix) The purpose of this study was to explore how younger women construct their experience of recovery following a myocardial infarction. Six women, between 48 and 53 years of age, voluntarily participated in an 8-week Guided Autobiography group, where they engaged in a weekly reflection and writing practice, and attended a follow-up session to review and validate categories and patterns of experience and meaning related to Ml recovery. This chapter contains women's constructions of recovery that emerged primarily through their written autobiographies and from the dialogue and process of each research session. The organization of this chapter parallels the unfolding of the research process as I begin by reviewing the introductory session including a depiction of women's tellings of their Ml experience. Next, each weekly session was explored and the respective Guided Autobiographical theme was described and followed by transcriptions of participant's autobiographies, and group feedback and dialogue. Kearney (1999) suggests that "verbatim accounts from women have great power to convey the experience of illness and suggest avenues of support" (p. 11). I conclude each GA session by offering personal reflections as well as theme and group interpretations. More specifically, I outlined and described the themes that emerged from each GA session and then conducted an across theme analysis which demonstrated the emergence of six general themes. These will be described and discussed in Chapter Five. I have created a multilayered text within this chapter to more fully represent the dialogue that emerged within the research group. The text format to indicate individual or group responses is a different font (e.g. dialogue). My hope is that the reader will experience a greater richness of understanding of women's stories of recovery. For clarification purposes, the term autobiography will be used interchangeably with the terms 'story' and 'narrative' in order to lessen the repetitiveness of the text. With her permission, I have included in the text the voice of the participant (Margaret) who voluntarily withdrew from the study after the second session. Introductory Session Proposed Session Agenda During the Introductory session, research participants met with the facilitator and myself as a group for the first time. The proposed agenda for this session included the following: 1) 57 introduce participants and facilitator, 2) review the purpose of the study, 3) describe and explore the format of Guided Autobiography and the connection to women's recovery from Ml, 4) review administrative details (including meeting time, group space, data recording, and time constraints), 5) establish group guidelines and ground rules, 6) introduce the "life line" exercise and debrief, 7) distribute guidelines for writing Autobiographical accounts and distribute the first GA themes and sensitizing questions, and 8) facilitate a closing activity. While the purpose of this first session was to review various aspects of the research method and format of participation, it was also an opportunity for participants to get to know each other and the facilitator, and begin to develop into a working research group. Rapport building and creating group safety was fundamental in this session's proceedings. As well, the proposed life line exercise could function as a warm-up for the 6-week GA format by familiarizing participants to the process of reflecting on previous life experiences and connecting these with internal processes and broader questions surrounding their recovery from Ml. The Unfolding of the Introductory Session There was a natural unfolding of this initial session as the facilitators addressed most of the items on the proposed session agenda as well as accommodated the needs of the research participants who expressed an urgency to tell their stories of Ml. In this sense, women quickly took an active role as participants, thereby contributing to the research curriculum and format of the session agenda. Due to time constraints, the life line exercise and closing group activity were postponed until the following week. A significant component of the facilitator's introduction was a discussion that linked the purpose of participating in a Guided Autobiography with women's recovery from Ml. More specifically, the facilitator explored the Ml experience and recovery as an example of a life transition and emphasized the value of honoring and/or grieving the potential losses often associated with this experience. In addition to thinking about the more external aspects of their Ml experience (e.g. symptoms, treatment, and hospitalization), women were encouraged to reflect on the internal impact of Ml by contemplating questions such as a) How has Ml impacted my life?, b) Looking back across time, who have I been up until now and am I still that person after Ml?, and c) Is there something that I need to let go of and/or grieve in the process of recovery from Ml? During this discussion, the mood of the group became more somber almost as though participants had been given permission to give voice to the more vulnerable aspects of their illness experience which are not typically addressed by medical professionals within the realm of cardiac care. In this sense, the facilitator normalized the emotionality often surrounding Ml, and validated the breadth of women's experiences. 58 Group Dialogue During the session, women remained engaged and attentive to facilitators and each other. They initiated asking each other questions, expressed emotion, shared information and imparted personal theories about their experiences, potential causes of their illness, and their recovery needs. While most of these contributions served to enhance and expand the group discussion, some were obviously disruptive to the flow of the group dialogue. I have included examples of women's commentary to demonstrate the richness their dialogue. Asking Questions. Many of the questions women asked appeared to help them create a reference point from which to locate themselves and others within the trajectory of their illness and recovery experience. For example, a) When did you have your Ml?, b) How did you know you were having the attack?, c) What did you think of the nurses that took care of you?, d) How long were you off work for?, e) Is everyone is the Healthy Heart program?, f) What medications are you on now?, and g) How often do you use Nitro? Expressing Emotion. A few participants talked about the feelings associated with having their Ml. While Helen identified feelings of sadness, Sally talked about grief, "it's like a death." In contrast, Arlene adamantly expressed her anger: I'm angry at my body for letting me down again and again. I'm really angry with it. You know... like shit or get off the pot. I'm angry I had this heart attack. It's the only thing that has really ever put me on my haunches. Everything else I've been able to deal with and go on. This one has made me weak and I don't like being weak. I can't do what I used to do. I get weak and I get tired much faster. I don't have the clean house that I used to have. I don't work the hours I used to work. Someone said this to me and it makes so much sense. I'm a very busy person. Why am I a busy person? If I'm so busy then I don't have time to think about all the pain that I've been through. So I just deal with it and move on. Arlene's candor gave the group permission to speak honestly in their expression of feelings and helped to define the parameters for participant involvement. Sharing Information. As all of the participants except one had participated in cardiac rehabilitation, they were eager to exchange details about their experiences. While Sally and Arlene described being very satisfied with their cardiac rehabilitation group, Sarah reported having switched out of an all-male group, where she felt extremely uncomfortable, into a co-ed group where she felt more at ease. 59 Bev, the youngest member in her rehabilitation group, felt "excluded" as the conversations of other participants, primarily in their eighties, often included topics that she could not relate to (e.g. transitioning into a senior facilities). Margaret also acknowledged feeling out of place in cardiac rehabilitation and withdrew from the program before completing it. Hypothesizing. A few participants offered personal theories explaining aspects of their illness experience. In talking about recovery, Arlene was adamant that "to get better, I know that I need more knowledge, exercise and I need to slow down. And slowing down will be the hardest part for me." Helen expressed her belief that emotional factors may have played an important role in why she had her Ml. Group Guidelines Participants and the facilitators collaboratively identified several group guidelines considered important to facilitating a comfortable, respectful and safe group experience. These included: a) confidentiality, b) respect for individual levels of sharing, c) the right to pass on GA readings, d) respectful feedback including refraining from judgment and advice giving, e) punctuality around beginning and ending sessions, g) mindfulness around over talking, and h) dealing with strong emotions and staying connected to the group (e.g. no rescuing). As well, the roles of the facilitator and researcher were clarified. Interestingly, participants mostly expressed differing needs around the issue of confidentiality. For example, Arlene stated that "I'm not embarrassed about my Ml. If someone can learn from my experience this is important." In this sense, she felt open to having her Ml experience discussed outside of the group. In contrast, Sarah suggested that "confidentiality is very important to me." Her biggest concern was that she "did not want her family to know what had happened to her." Women's Tellings of their Ml Experience Participant introductions were a key component of the introductory session both in terms of building rapport and safety between group members and as a means of locating each woman's context. Consequently, participants were asked what they wanted to know about each other and collectively agreed on the following information: a) current age, b) age at onset of Ml, c) Ml symptoms, and d) significant details surrounding the Ml experience. In essence, women wanted to tell and listen to each others Ml stories. During the telling of these Ml stories, all of the participants were highly engaged as they offered comments or asked clarifying questions as needed. The following descriptions are a retelling of women's stories and include verbatim excerpts. 60 Margaret. Margaret volunteered to tell her Ml story first and was a candid historian. I had my heart attack in July, and I was forty-eight, and I knew I was having a heart attack. I woke up in the middle of the night and classic symptoms; what you see on TV I had. Crushing chest pain, nausea, dizziness, pain down my left arm...and somewhere in the back of my head I had heard that if you take an aspirin when you are having a heart attack its good. And I remember making it to the bathroom. I have no idea to this day whether I took that aspirin and then I collapsed on the floor and crawled to the phone. I live alone and my biggest fear in life has always been 'What happens if something happens to me in the middle of the night and there is nobody there'? I lived through it. Sally: I hope that the laundry is done if I drop down (women laughed). Yeah...well that was the thing too, because the house wasn't exactly the tidiest. And I vaguely remember having...many many men in my house and I've never had that many in there at one time before and they kept saying to me 'What do you want to take with you?' and I kept saying 'How am I going to get home?' I had no idea I was going to be in the hospital let alone for nine days. [Several women nodded their heads in understanding her shock]. Margaret: So I knew right away. Helen: You called 911. Margaret: Oh yeah. Researcher: You know what's interesting Margaret is that today I was listening to one of the nurses at the hospital and they say that 30% of men, and men have these classic symptoms more so than women, only 30% of men have what you just described. So the numbers of women that have those classic symptoms are significantly less. Margaret: I've heard from many of the women that I've talked to that have had any kind of chest pains, whether its angina or an actual heart attack, that their symptoms differ a lot from mine. And I have noticed that everyone seems to feel something different. But yet I knew right away that that was what it was. Of course when I am going in I'm thinking 'triple bypass heart surgery.' But I have no risk factors other than being a smoker. I'm not overweight, no high blood pressure. No clogged arteries. I didn't have any arteries clogged. No family history. No genetics. And out of the blue, a 48 year old woman who is obviously not overweight is having a heart attack. Facilitator: And I hear shock. 61 Margaret: Yeah...yeah...It was very odd...very odd. And to this day no one really believes me. And it took my own physician 2 months to accept the fact that I had actually had a heart attack. He would not believe it. He kept saying 'it's just angina.' And I kept saying Then why was I in the hospital for nine days?' Helen: So what did they do for you then while you were there? Margaret: Nothing. Well I had the angiogram done. I had an EP study done because I went into VTach. They have no explanation why. Arlene: What's VTach? Margaret: My heart went into a rhythm the wrong way and it was dangerous because those cardiologists ran. Researcher: I t 's a very dangerous arrhythmia. And an EP study is where they actually zap a node that causes the arrhythmia. Margaret: Well I don't know if they did that but they went in through the same area so I had all this massive bruising and heparin shots and it was real pretty. Arlene: Did they put in a stent? Margaret: No, there was nothing clogged. So I had really nothing done other than medication and observation for nine days in the hospital. And I have been told by a number of people that those women like me who have nothing done... like surgery wise... have a harder time dealing with it because there is no resolution. So my biggest thing still is if they don't know what caused it in the first place. So when is the next one going to happen? Helen: But you're on medication now? Margaret: Yeah, but not nearly what I was on then because it's now a year and a half post. So, basically I'm on one thing now and that's it. Helen: What are you taking? Margaret: Atenolol. It's an ace inhibitor. Is that Atenolol? Arlene: That's Atenolol. Margaret: That's what I'm on and nothing else. I mean I have Nitro. Researcher: So you're really wondering if this is going to happen again? Margaret: Yes...yes. Helen: Do you need the Nitro very often? Margaret: No, but I carry it with me. Helen: Do you use it sometimes then? Margaret: Oh I think the last time I used it was 4 or 5 or 6 months ago. Helen. 62 In a brief manner, Helen recounted her experience of having the Ml, ending with a question related to making sensing of the event. Helen had her Ml 3 years ago at the age 48. Compared to other women in the group, she had experienced significantly more recovery time (by almost two and a half years in some cases) than the other research participants. At the time of her Ml, Helen awoke in the middle of the night with extreme back pain that radiated down both hands and into her fingertips. Having "no idea it was a heart attack," she made several efforts to alleviate the pain. "I thought if I stretch it will go away; if I lie on the floor it will go away; if I take a hot bath it will go away." Margaret: How long was the time frame? Helen: For about half an hour and it just kept getting worse so my daughter called 911 and I was taken by ambulance to the hospital. The following afternoon, Helen was diagnosed with Ml; "I couldn't believe it...I was very shocked because I'm not overweight. I've never smoked. I run, I'm very fit and I'm vegetarian, so I have no risk factors except it runs in the family". Facilitator: Did you know that? Helen: Yes, but my mother who smoked and was overweight had all of the symptoms. Helen underwent a heart catherization 3 months after her Ml as "it didn't appear that there was any urgency." While her angiogram did not reveal any blockages in her coronary arteries, she had some complications: During the procedure, my artery spasmed which is what they determined the problem was initially although they don't know for sure. There was no particular information given about why an artery will spasm but when it spasms it may as well be clogged because nothing goes through. That's the thing, it has spasmed once...when will it spasm again? Helen was off work for 4 months after her Ml. [Wow! Several women expressed big surprise]. Helen: I have a good benefit plan in my work so I thought well... I took advantage of everything...whatever there was available to me I was doing. Unlike other participants, Helen did not attend cardiac rehabilitation given her already healthy lifestyle. Since her Ml, she described vague and infrequent cardiac symptoms. About every 6 months for some reason or another and it doesn't seem like there is any I'm not more stressed although sometimes I'm more tired...although you never know if that's because of the heart or because my life's so busy...which comes first...I'm trying to observe the conditions when I do need some Nitro. 63 While she has taken Nitro a few times since her Ml, Helen has not required further hospitalization. Finally, in trying to make sense of her illness experience she described herself in the following way: I am a major A type character and I push really hard and I started to do less after the Ml for a while and that was pretty good but it is not my character so I am back to doing a lot of things that I love to do. I guess that's the hard part...trying to juggle doing less when you're really the kind of person that doesn't do less. I don't know if that's really what it's about anyways...I'm not really sure. Sara/7. Sarah appeared nervous as she told her Ml story, "you know it makes me very sad when I'm talking about this." She immigrated to Vancouver from Iran almost 5 years ago and is attending a local community college where she is upgrading her accounting skills. At 48 years-old her Ml occurred last May while commuting to school on the local sea bus. I felt chest pain...I was sweating and I had pain in my arm and shoulder. I knew it was a heart attack because my father had six heart attacks and I was always there to help him with my family. Because of the pain, I was lying down but nobody asked me anything if I needed help. I was sick and everybody ignored me. [The group gasps and shakes their heads in disbelief]. For more than a year, Sarah had commuted on the sea bus recognizing several people who acknowledged her daily. "They didn't even ask me, 'Why are you lying down, why are you you need any help?' Nobody, not even the woman sitting close to me [helped me]." Arlene: And they ignored you? Sarah: Everybody ignored me. As soon as the sea bus stopped they just left. Helen: They left you there? [The group responds in disbelief]. Sarah motioned for the attendant, "I was just pointing because I couldn't talk. He came and I said I'm having a heart attack. He called the other crew and they called 911." When the paramedics arrived they told me: You cannot fool us you are not having a heart attack. [The group gasps]. It took 25 minutes before they decided to take me in the ambulance and they asked me to walk towards the bed because they didn't believe that I was having a heart attack. [The group gasps again and Sally says "Set the names of those guys."] In the ambulance they were discussing me... 'I don't believe that she had a heart attack. She doesn't want to talk English...she can't talk English...that is why she is not talking.' Sarah forced herself to talk to the attendants. "Why should I fool you? What is the benefit? I'm having a heart attack. I know the signs because I have family history...just take me to the hospital." She was finally taken to a local hospital where she was assessed and sent for a heart catherization. They found blockages in four arteries and the interventionist performed an angioplasty with stents. After her Ml, Sarah took two and a half months to rest before returning to school part-time. She struggled with returning to the sea bus as a commuter and facing the passengers who had ignored her appeals for help during her Ml: They were surprised to see me. I could see they wanted to say 'Where have you been?' But I couldn't...I was shaking...I was hoping that something [would] happen to them...that they would pay for what they did to me. Every day I go to school in the morning and I watch them and I just want to scream 'Why did you do that to me...why?' Facilitator: When I think about recovery, I think that is a huge piece for you...that traumatic response because people did not respond. For the past several months, Sarah has been seeing a psychologist through the cardiac rehabilitation program she attended at the hospital. "I couldn't talk about that experience until last week when I started to talk about it. My psychologist told me it is better to talk to women that are the same as me...that had the same experience." Since her Ml, Sarah has been plagued with nightmares, difficulties sleeping and symptoms of depression. "I had nightmares almost every night. I'm alone and in a dark place and I am looking for help and nobody helps me." While Sarah has no family or close friends in Vancouver, she currently lives with the son of an old family friend. She described the following: I have a roommate. He helped me but you know in my culture, living with a man is not easy. Living with a man who is not your father, your brother, or your husband or your son is not easy because it is not common in my country. But I am scared of having another roommate. I have nobody else. My family is not here and they don't know. I didn't tell them about my heart attack. Margaret: So you are keeping this to yourself? Sarah acknowledged that the most devastating part of her Ml experience was that people ignored her appeals for help while on the sea bus. "I cannot get over that. At that time I thought 'They don't accept me. They are Canadian and I am Middle-Eastern and they don't want me here.' Again, they are smiling at me and here in Canada!" Facilitator: When something like this happens it is almost as if that becomes more traumatic than the heart attack. The way others responded and the way they didn't respond. 65 [The group showed great empathy and appreciation for Sarah sharing her story]. Sally: I'll take the sea bus with you. [The rest of the group agreed and stated "We should all ride the sea bus with you and we'll stare them down"]. Sally. Sally described her Ml and her current experiences with a detached straightforwardness. Her Ml occurred at the end of June 2003. Like several other women in the group she was also 48 years-old. Margaret: You were 48 too? A very common thread here. Four of us at age 48 had heart attacks! Sally: I think mine was quite mild. It happened at lunchtime while I was at home. I just had a new puppy. Sally previously had pericarditis, an inflammation of the tissue that covers that outer surface of the heart, and wondered if her pain was a recurring episode. I've been in hospital for that before and I thought maybe it's that. But this felt different just a wee bit. I waited for it to go away hoping it was the same. I moved around to see if it would hurt like the other thing but it was different. Then I started to feel it here (points to center of her chest). After experiencing this chest pain, Sally called her neighbor who she wanted to take care of her dog. When her neighbor arrived, she called 911 and Sally's parents who live close by. Sally described the paramedics as being "fabulous" as they promptly transported her to the emergency trauma room of the local hospital where she was quickly taken for a heart catherization requiring angioplasty and stents. She offered few details of being hospitalized other than "I stayed a couple of days and went home." Sally described often feeling tired since her Ml: By the time you get washed and dressed in the morning it's time for a nap while at other times, you think 'today I feel great' so you then do what you did before and you are laid out for a couple of days. But you hate being like that and you don't want people to know that you're feeling that way. Sally reported that she is currently not working. I do get quite tired and I'm not working. I had stopped doing the hairdressing a while ago because of the arthritis. So I do some people at home. That was a major change, so I had to go into ladies retail. And you become a shopaholic so that wasn't a good thing. Sally also discussed her father's response to her since having the Ml and acknowledged feeling not believed in terms of the extent to which she had been impacted by the event. 66 Faci l itator: It's interesting that your fa ther did not really believe or understand you. Sally: He had a bypass. He never had a heart attack. He had a wee bit of angina. And then he had angioplasties and feels normal. My dad doesn't understand why I am not right as rain. You know, after a couple of days 'oh, you should feel fine shouldn't be tired.' 'No, I'm quite tired...give me time.' He thinks it was just a little angioplasty thing and you are back to normal. He doesn't know the impact of the heart attack even if it wasn't a huge knocking me out type. Sally questioned whether her father had compared her Ml to her experience of having angioplasties performed on both legs due to peripheral vascular disease. "I've tried to explain it to him. So mum just tells him to shut-up." Margaret: What do you mean you had your legs done? Sally provided the group with more details about the procedure and stated that, As soon as you're back to normal you feel terrific and you can walk again. So he's thinking it's like that. 'You should be alright now...hey come on. Well why are you tired? You shouldn't be tired.' He worries about me. Faci l itator: You don't fee l the alright that he thinks you should be feel ing. Bev. Bev articulately described the events surrounding her Ml in vivid detail. Compared to other group members, she had most recently infarcted on the Labour Day weekend. She was 53 years of age and referred to her symptoms as being "classic" and remembered "feeling very tired that day." Mid afternoon, while climbing the stairs in her home, Bev recounted: This incredible crushing pain in my back and my arms and the back of my neck and in my chest and I thought 'I've done something...I've pulled a muscle' but there was a little voice saying 'maybe it was a heart attack' (laughs) but I didn't really listen to it. Bev walked outside and called for her husband to come inside the house. "Tell me what's wrong' and I said 'I don't know...I just feel terrible' and I sat down in the living room." Bev's husband had an inkling that she was probably having a heart attack and called 911. The paramedics arrived promptly and transported her to the local hospital. They were fabulous with me. Unlike your experience (referring to Sarah) where they were so doubting and made you feel so terrible...the people who responded to me were terrific. I felt that I was really cared for and that what I was saying was really important and I was taken seriously. I really appreciated that. In contrast however, Bev felt that the quality of care shifted dramatically once she arrived at the hospital. In emergency, she was given various medications that reduced her pain to a bearable level. Blood work eventually confirmed that Bev had had a Ml. She was 67 transferred to the coronary care unit later that night and scheduled for a heart catherization the following afternoon. The procedure included angioplasty and the insertion of two stents. Bev recounted the typical procedures following angioplasty which included having her leg clamped for 4 hours to help stop the bleeding. I bleed a lot and the bleeding did not subside so I lay on my back. They had poked around in my kidneys too because they suspected with the kind of problems I had with my artery that it may well be my kidneys as well and so for 16 hours I lay in one spot unable to move and not able to do anything. [The group collectively moaned in astonishment at the imagined discomfort]. I hadn't eaten since the day before and I felt really terrible and I had a nurse that chastised me constantly all night because I wouldn't take pain medication and it was her mission in life to make sure I had some pain medication so I would go to sleep. I reassured her that I was not trying to make her life difficult and in fact, I had never slept on my back and if I were to be given anything at all to relax or to be put to sleep then I would immediately turn onto my left side and I would probably bleed to death throughout the night. And she was just miserable...totally miserable...and I have never dealt with anyone like that in my life and I hope I never do again. When you are the sickest and most vulnerable you need someone to be...[several women say the words "comforting" and "understanding"]. Well even if they don't understand at least something (laughing) ... ["compassionate"]... yes compassionate. That same morning the cardiologist that did the angiogram and placed the stents came in and said 'well, we fixed you. You can go home now.' And all the leads were pulled off my chest and I was sent home (incredulous). And there I was and I said 'but I'm still having chest pain' and they said 'we fixed you...go home'. So I did. That was the Thursday. While Bev stated "I found that to be quite an experience," it was evident that she had understated her experience of being hospitalized which appeared from her descriptions to be highly distressing for both herself and her husband. The day after she was discharged from hospital, Bev had moderate chest pain which continued into the next day. She tried to contact her family physician but found that she was away for the long weekend. Instead she managed to talk with her doctor's locum who was on a plane and who attempted to contact the on-call cardiologist for several hours. "This woman called back from the aircraft and said 'go to the emergency...they have spent tons of money on go there.'" 68 Consequently, Bev and her husband returned to the hospital where she again felt her care was compromised. They placed an oxygen mask on me and I said 'I don't feel any my husband said 'The tank is empty what's going on here?' And they said 'This is a long weekend we are very busy'...and then they said 'Why don't you use your Nitro with the chest pain?' And I said 'I don't have one has given me any.' And they were really surprised at that. For the first week following hospital discharge, Bev described "hating" that she had stents in her heart. I would see my arteries...this particular artery and I would see a steel gate. And a little voice in my head said I couldn't turn over onto my chest because this gate would close up and that would be curtains (laughs). [Several group participants laughed with Bev despite the seriousness of her concern]. Researcher: What was that like for you? Bev: At the time, it was pretty scary actually but I don't see that anymore. Helen: Was there something else happening when you went back on Saturday? Bev: Well they said 'It had only been 2 days since the stents were implanted and nothing will happen to them in that amount of time.' It was almost like...'There, there dear you go home now.' I was given the Nitro and I've use it twice since. I don't really worry if I'm going to have another heart attack. I probably will but I don't worry about it. I don't think about it. Margaret: But do you carry your Nitro everywhere you go? Bev: I do sometimes. Margaret: I did for the longest time. I wasn't thinking about having another heart attack but I wasn't leaving the room without having the Nitro in my hand. Bev: I don't really think about it anymore. I do what I can by myself. I've joined the Healthy Heart and I must get rid of this weight. I have some wonderful friends and a really supportive family and I have always looked at life with humour and I've been really lucky in my life. I don't really think about it too much. Facilitator: Sounds like you have a coping strategy. Like a sense of really knowing even through the shock of it. A deep down knowing. Like you with the aspirin (points to Margaret). Bev: I actually kind of knew before I had my heart attack. I had known for a year that I probably had a problem and I had mentioned it to my doctor because I used to notice my ankles swelling and just felt I was dragging an anvil around half of the time. And I have asthma and I am also incredibly anemic. So I fight with that all the time to make sure my hemoglobin is where it needs 6 9 to be and I kept rationalizing that away...'ok it's my asthma.' I would walk even though I'm heavy, I would do a lot of walking and that little voice would say...'It's probably that but I'm sure it isn't.' Even my own doctor was really shocked. She was just stunned. Researcher: That little voice, I had heard that. And there is this phenomenon of women's body wisdom. We know when something is wrong and often t ry to convince others that this is something that is legitimate. I t may not be a concrete thing but an intuitive sense. Arlene. Arlene's Ml occurred while away on a business trip in the States. She began her story by describing inexplicable symptoms, including ankle swelling, several months prior to her Ml. In October, Arlene had contacted her physician and was sent for tests which came back negative. Recurring symptoms the following January disappeared and she cancelled her follow-up doctor's appointment. By March, Arlene was busy finalizing the completion of an employment position before taking a promotion to become an Administrative Assistant in her office. At that time, she was working 15 to 17 hours a day, 7 days a week and loved what she did. When her promotion came through later that month, she was sent to a training seminar in the States. While at the seminar, Arlene developed symptoms that gradually became debilitating. At the end of the first day, "I had sharp pains in my feet. I thought what is wrong...what's wrong. I was anxious." Being a diabetic, Arlene knew she needed to eat but had little appetite. Not feeling well, she returned to her hotel to get a good night's sleep. By morning, Arlene felt rested and returned to the seminar. A few hours later however, she felt that her blood sugars were rising. I went to the back of the room and put my feet up and I felt really tired. 'What's wrong with me?' By 11 o'clock, I knew this was a wash and I needed to take insulin... I needed to do something. Arlene returned to her hotel where she took her blood. "It was about twenty and I thought ...twenty...why am I feeling so rotten?" [Several women asked for clarification around a sugar reading of twenty]. Arlene explained to the group the values associated with normal sugar levels. Despite taking several more doses of insulin and resting, Arlene's sugar levels continued to increase over the next several hours. She contacted her endocrinologist who also increased her insulin. By 8:30 pm, her sugar levels had finally come down. While she needed to eat, she had little appetite. A few hours later, Arlene woke up at 1:30 am because of acid reflux. 70 I thought what is going on here (getting angry). I get up and I spit it out and I thought there now I can get some sleep. I take my sugars and I'm really high. I thought not this again and gave myself a whole bunch of insulin through the pump. And I am writing down what I am doing. And I'm going to the bathroom and every hour I'm taking insulin and going to the bathroom. So I know now that I have ketoacidosis (a state of insulin deficiency). By 6 am, Arlene continued to feel increasingly ill. She called her endocrinologist again and he agreed that she should return home. Given she did not feel well enough to drive home, her boss offered to take her. "I'm starting to pack but I have no energy. I'm really tired so I lay down. When I get some energy I'm up again trying to pack my suitcase." When Arlene began to vomit, she called the paramedics. "Thinking ketoacidosis...I've always been taught since I became a diabetic in 1988 that if this happens you go to the hospital." During the paramedic's assessment they repeatedly asked if she was having chest pain which she denied. "Well, maybe it's a little tight but that's it...nothing." Arlene was transported to a local hospital's emergency department where she continued to vomit and have severe stomach pain. She was kept overnight and sent for additional tests which revealed she had had a heart attack. "I said 'You're talking about me...when was this supposed to have taken place (laughing)?" She was told that she needed a stent. "I couldn't believe how fast everything was going. Hold it here, I have some questions." The attending physician explained what was involved. Well if you don't have it you'll die and if you do have it there may be complications. But you really have no choice...this is just the way it is. I've done this operation thousands of times before and you have nothing to worry about. Arlene underwent the procedure which she described as "awful." Having experienced some complications, she was required to lie on her back for the whole day instead of a few hours. While hospitalized, Arlene was comforted by her sister who came to stay with her and did not leave her side for her entire hospitalization. The next night, Arlene began to have difficulty breathing. Her condition worsened significantly and she developed congestive heart failure. The following day, she informed the nurses that she was leaving the hospital. Let me out of this bed. The only way I'm going to get better is to get up. Friday they allowed me to get out of ICU for a half a day. The next day I said Tm leaving' and I left and went home to Vancouver. Arlene first contacted her colleagues to ensure that they had completed their assignments so she would not have to worry about work. 71 [The group collectively expressed shock and was initially silent. A few participants said together, 'Given how sick you were I can't believe that you just got up and left!'] Once she returned to Vancouver, Arlene arranged to see a cardiologist and joined the cardiac rehabilitation program at the same hospital she attends her diabetes clinic. "I started in September and I think it's fantastic." Margaret: I had to wait 3 months to be accepted in the program. After a week of being home, Arlene returned to work to set up her boss's office as she had bought new furniture prior to getting sick and was concerned that he couldn't do anything without his office set up. Margaret: I just can't fathom moving around that much a week after your MI . There was absolutely no way I could have if I wanted to. Arlene: The reason I went back to work so soon was because it was very stressful for me not working. The doctor figured I would do myself more damage at home fretting and being upset than just going to work. I was in an office and I didn't do anything stressful. If I was tired I didn't have to work a full day. While Arlene took her time, she admitted having to walk a lot to set up the office. Helen: Given that you were in between jobs, were you covered by a medical plan? Arlene had transferred to her own medical plan from a previous partner's plan less than 2 months before the Ml. Consequently, her $46,000 US hospital bill was fully covered by medical. Facilitator: I t 's different for everyone. For you it's going back to work as being busy is less stressful than not working at all. So we learn from each other. Arlene: When I had the heart attack they said that the right artery was where the attack was and they couldn't do anything with that. It was the left artery that was 75% blocked and that's where they put the stent. Because I'm a diabetic, the small arteries are plugged - they are gone and there is nothing they can do. My heart attack is a complication of diabetes. That's what it was. Researcher's Process In this session, I felt deeply moved by participant's stories and engrossed in the group process, yet somewhat overwhelmed. I attributed this to several factors including my own concerns about wanting the first research session to run smoothly, accomplishing the proposed tasks, containing a group of six female heart patients who were excited to dialogue with each other, negotiating the needs of participants while maintaining the research agenda, and taking in the richness of the individual and group dialogue and process. In this sense, perhaps a parallel process existed between both facilitators and the group participants as all of us were 72 concerned with wanting to take in the richness of the group experience albeit from different perspectives. Debriefing the session with the facilitator immediately after the group and more formally the next day was extremely helpful in terms of better understanding the events that transpired during the session, developing strategies for addressing group process, and planning for the next session. Interestingly, my impressions of the session following the videotape review were very different than my experience and impressions of being a participant in the group. More specifically, what I perceived as the group's vitality and at times disjointed group process was not captured on videotape. Instead, the session appeared to unfold in a fairly orderly manner. This is a significant point with regards to the research process. Having to maintain multiple consciousnesses while conducting live research differed considerably from stepping out of the group interaction and into the singular role of interpreter while reviewing the session in video format. Being reminded that the purpose of the video recordings was to document the research process, enabled me to more fully relax into the role of researcher during subsequent sessions. Researcher's Interpretations of the Introductory Session The introductory session was a valuable first research meeting. While most of the items on the research agenda were accomplished, the session was characterized by a tension between maintaining the structure of the research agenda and women's needs for dialoguing with each other. Consequently, the urgency that was demonstrated by participants to tell their illness stories guided the session. The quality of women's urgency to tell their story was palpable; analogous to a lid bursting off an engorged container as women indulged themselves in asking questions, sharing stories, proposing hypotheses, and offering information. The facilitator and I were successful at facilitating rapport building and the development of group safety as participants were engaged, interested and willing to contribute in the session. They were also supportive, respectful and appropriately empathic towards each other throughout the evening. A striking example of support was demonstrated when the group promptly responded to Sarah as she recounted her traumatic experience of being abandoned by others during her Ml on the sea bus. A highlight of the evening was clearly women's tellings of their Ml experience. Embedded within each participant's story were distinctive experiences, personal meaning, and dominant themes. In pondering these stories, I wondered if the advent of a life threatening health event tends to amplify preexisting life issues and dis-ease. My impressions of each participant are as follows. 73 Margaret's greatest concern appeared to be anticipating her next Ml. Despite this anxiety, she has continued to smoke believing she is powerless to influence this inevitable outcome. As well, her story suggested that she felt unsupported by health professionals while hospitalized and by friends following hospital discharge, and possibly in her life in general. Ironically, she eventually withdrew from the study because of feeling overwhelmed by her current state of anxiety and struggling with the demands of the research. In contrast, Helen described having greater confidence in her body (and heart) at three years post Ml. At this point in her recovery, her journey appeared to involve a deeper search for personal meaning and truth, which may serve as a passageway to better understanding why she had her Ml. Sarah's shocking story of Ml is one of victimization and the sense of not being cared for or valued as a human being. Despite being a strong woman, she came from a culture that silences both women and men. While she felt silenced by her Ml experience, participating in the group provided her with the opportunity to find her voice and challenge her stories of not being cared for and of being isolated in this country. Sally spoke to the lack of understanding initially received from her father about the impact of her heart attack. As well, she expressed confusion as to the purpose of reflecting on the past and engaging in the GA process. This confusion may prevent her from fully accessing the potential benefits of participating in the research group including receiving support from other women who understand the Ml experience. Bev described a divergence between the exceptional care she received from the paramedics and an on-call physician, and the brusque treatment by various health providers while hospitalized. While her strength of character and spousal support helped her cope with the events that transpired during her hospital stay and the lack of information and resources following her hasty discharge, she was nonetheless distressed and disillusioned by her experiences. At times, Bev described difficult experiences with levity despite reporting to feel frightened or upset at the time. Participating in the group would allow her to explore her recovery in supportive and caring environment. Arlene quickly stepped into the role as a brazen leader in the group. She clearly expressed anger towards her body for letting her down by having the Ml and for now feeling weak and tired. From her descriptions, she has moved through her life as a strong and determined woman who has pushed past many difficult losses and health setbacks. Discharging herself from the hospital following her Ml and returning to work in 6 days attests to her survivor nature. While Arlene insisted that she rarely reflects on adverse events, she was willing to 74 consider that her typical coping style (to just move on) may not best support her recovery from Ml. While each participant's Ml experience was uniquely different, several significant elements emerged from women's autobiographies and the group dialogue. In general, participants described feeling overwhelmed at times by various aspects of their illness experience including physical symptoms, hospitalization and treatment regimes, frustrations in dealing with health professionals (e.g. communication difficulties and the lack of specific information), concerns about the future, and limitations (imagined or real) resulting from the Ml. As well, all of the participant's descriptions were suggestive of having tacit body knowledge that their symptoms were indicative of there being something wrong physically that required medical assistance. While four of the six women suspected that they were having some kind of cardiac event, all of the women sought medical assistance shortly after the onset of their symptoms. At the same time, all of the participants expressed shock or surprise at being diagnosed with Ml and did not consider themselves or each other to fit the stereotype of a "heart attack patient." In this sense, participants existed outside the cultural story that women, particularly younger women, do not experience heart attacks. Some participants suggested that this stereotype had been mirrored back to them in the reactions of others including friends, family members, and health professionals who were at times "dismissive" or "skeptical" about the seriousness of their illness event. Also evident from participant's autobiographies and dialogue was their hunger for cardiac information specific to their individual circumstances. One participant noted that although she had read "everything out there" related to Ml, "there was really nothing that spoke to me as a younger woman." Interestingly, I was struck by the level of sophistication in the medical knowledge and language spoken by participants. Several women reported feeling dissatisfied by the information they had received from medical professionals regarding the cause of their Ml, guidelines around resuming their daily routines including physical activity and sexual relations, the benefits of cardiac rehabilitation, and general measures to prevent another cardiac event. In this sense, it was clear to participants that medical professionals "do not know everything" about women's cardiac health. In the absence of physical findings and satisfactory medical information from her cardiologist, one participant constructed her own theory to explain the cause of her Ml. Subsequently, women questioned where they could access credible and relevant health information. The group context represented a resource for these women as they obviously were interested in learning from each other as female Ml patients. 75 Finally, participant's stories suggested that the experience of Ml often called for women to become a different kind of person. In general, women talked about focusing more on self-care. More specifically, several women described needing to learn how to be more assertive in asking for information and/or help, in setting boundaries with others, negotiating and prioritizing responsibilities and obligations, pacing oneself physically, developing a greater body awareness and ability to interpret bodily symptoms, and decision making around lifestyle changes and redefining their health. Guided Autobiography Theme One Your Health and Experience of Ml and Recovery The format for this second session included a group check-in, discussion of participant's hopes for the group, completion of the life-line exercise, reading of the first Guided Autobiography theme narratives and group feedback, an introduction to the next GA theme, and a brief group check-out. All participants attended this session. Group Check-In Almost all of the participants reported feeling particularly tired this night as a result of overextending themselves over the past several days. Arlene acknowledged not feeling well as "her sugars were high like when she had her Ml." Several women demonstrated concern and checked in with her over the course of the evening. In contrast, Helen described feeling "not tired" despite running a ten kilometer race, participating in a music performance, and marking papers over the weekend. Both the researcher and facilitator shared their impressions of the previous session including various themes that emerged from women's stories of Ml and the group dialogue (refer to the previous summary). Participant's Hopes for the Group Each participant identified her hopes for the group and the research study. Several women acknowledged wanting health professionals to have more female specific cardiac information. Arlene spoke to the importance of educating women about the health risks of Ml. I want to get the word out to other women so they can be more aware of what could happen to them and to be more accepting when it is happening. Not to go to bed like I did as it was the worst thing I could have done. So if women have the signs they will know what to do. Two women expressed their belief that talking about their Ml experience in a group format would help them (and others) better accept their illness. Sarah said, 76 I was ignoring my heart attack and I didn't want to face it or talk about it. My psychologist told me it would be better if I went to a group and talked about it and faced it. You have to face it. Similarly, Bev reported feeling: Glad to be able to share my story and I'm really glad to be able to listen to everyone else's story. I think through sharing our stories and listening to others we are able to feel better about ourselves and understand what's going on. Facilitator: So Bev, you think that this group could be helpful by giving voice to your experience without being questioned and that in itself can be very healing? Bev further elaborated on her experience of not being believed by friends that she did have an Ml. "So because there isn't a cast or prosthesis or there isn't a something, they can't see the stents in your heart or the grafts and the bypasses and all that stuff." [Women nodded their heads in agreement]. Facilitator: So again, you've had this experience but it doesn't get mirrored out there or validated, like that couldn't have happened to you. In describing her hopes for the group, Helen postulated an eloquent theory explaining the potential cause of (her) Ml which she continued to explore in greater depth in subsequent GA themes: What I'm hoping for is a validation that emotional, psychological stories or experiences contribute or had something to do with the heart attack as well as or probably more so than physical attributes. I don't think in the health care system and I certainly know in the education system, that we pay attention to the emotional wellbeing of our people. I think it is bigger and more important than what we are paying attention to. It's just that we are imbalanced with rational, cognitive thinking and driving real hard on that road and we have a heart as well that needs nurturing, attention and guidance right from day one and its not happening the way I think it should. So I would like to see the validation of the emotional intelligence in health be brought forward. And women are more emotional than men, well maybe not but more willing to talk about emotions anyways and so maybe that is part of what happened here... I don't know. Facilitator: I just had an image of you bringing heart into the room...the other kind of heart...the metaphoric heart. Helen: Yes, exactly. I don't think it's a coincidence that the heart is associated with love and emotions and all of that and it drives our body and we all had heart attacks and it doesn't seem to have very much to do with physical factors...well maybe a little bit. But there is also another part of the story that the medical system doesn't pay much attention to. 77 Sally: Well they think that stress is a big factor. You mean we have to deal better with stress before it happens? Helen: I don't know about that. Maybe. But stress is also good. Yeah I think stress is part of what I'm talking about but I'm not just talking about stress. I'm talking about your happiness level and how you process the big emotional events in your life like the birth of your children or the death of your parents or death of friends or divorce or any of those big deals. And how we process them and carry them with us because they can become part of our stories. In my reflecting on the heart attack experience, I kind of went through it but because it was all dealt with on a physical plane: the angiogram, the drugs, the actual experience, and cholesterol, whatever. It was all the physical rational side of the equation. I went to one counsellor about the emotional aspect of it. That was not a counsellor trained in health issues. That was a counsellor trained in social issues. So I kind of got nowhere. I still don't really feel that I have much of an understanding about what happened. [All.of the participants are highly engaged and some are nodding in agreement]. Researcher: I t 's like you recognize a gap between the physical and emotional aspects of the person that needs to be integrated in the care they receive. Helen: In my experiences with doctors and the cardiologist it wasn't big on the priority list to look at the emotional wellbeing of my health and my recovery. I am a fairly high functioning adult, why would you Want to look at my emotional makeup. I cope fairly well it appears. But looking at the physical side of things, yes, I had a heart attack and then you check out all the physical things and everything seems to be in place. So where are we... I still don't really know. Facilitator: So if the experience of a heart attack is a physical one and an emotional one it would seem that the recovery process would involve both those things too. Helen: The physical aspect looks at your family history, your health history, your exercise history, your diet history. The emotional side doesn't really look at your emotional history it just doesn't go there. It's all a big area that is just not addressed, not put anywhere, not resolved. It's just kind of there. Intuitively, I think it's a big part of the whole thing. I don't know that for sure but what else could be going on here because I have always been healthy. I function at a pretty high level of good health. I've never abused my body, never smoked, drank hardly at all, didn't party hard, slept well, and ate well. But I haven't always functioned well emotionally. When emotional things have happened to me I don't recover fast. They're big big deals and I take them and pull them in into my whole being and hang on to them very tight for a long long long time but that doesn't appear on the outside. 78 [Participants continued to ponder Helen's theory and some nodded in acknowledgement. I was flooded with the memory of a recent personal loss and my awareness of the term "suffering a broken heart." I too had wondered if the impact of my grief was harming my heart. Is the pain associated with our emotional and physical heart similar?] Margaret felt that there was an absence of emotional care available while hospitalized: The emotional side is ignored and not dealt with in terms of having a heart attack. I know that was lacking for me while I was in the hospital for those nine days. Nobody came to talk to me about how I was doing. Not physically, but how I was dealing with (points to head). Not one person. Which I think was very wrong. They should have had somewhere along the line somebody come in and see me and anybody else that was there. Not surprisingly, as participants clarified their hopes for the group, they also shared significant aspects of their Ml and recovery experience that for some, continued to emerge in subsequent GA autobiographies. Life Line Exercise The life line exercise was introduced to the group with the intention of orienting participants to the life review process and to better understand which significant events in their past and present have shaped who they have become as individuals. In this sense, the exercise brought an immediacy of experience and awareness to each woman. This process of discovery could also help women tap into their coping skills and inner resources which may influence how they navigate their current recovery process and the choices and decisions that they make. Women were provided with the following instructions: The life line can be one way of mapping significant life events and deciding if you think they are positive or negative. This is from the perspective of today. The first task is to put yourself on the life line at zero (when you were born) and then choose a point that will represent your death. Now choose up to five significant events (including the Ml) and then spend a couple of minutes with a partner discussing one of the events that you have moved through and feel comfortable sharing. Say something about the actual event and consider the following two questions: a) How did you feel about the event at the time and from today's point of view, and b) What did you learn about yourself (e.g. How did you cope? Did you have certain skills or strengths?) In general, participants responded to the exercise with strongly mixed feelings. While some participants expressed an interest in listening to and learning about other women's experiences, others did not enjoy the exercise. Arlene adamantly stated that "I didn't like the exercise. I didn't like it at all. I didn't like doing it. I liked listening but I didn't like participating. It's too much negative." 79 Sarah: I had the same feeling. Building on her earlier theory, Helen suggested: Using our reactions as an example, I would like to add that I think the emotional component of this is bigger than we think because I think the way we process the events emotionally in our lives causes us to feel positive or negative and the fact that people have difficulty doing this sort of reflection shows me that emotionally there's a lack of peacefulness or not healed stuff. So after fifty years, no wonder you have a heart attack. So if you didn't have a stomach attack or a lung attack or a bowel attack, there's a heart attack. And I think it has to do with the emotions. Facilitator: And I think this kind of process allows us to look at those significant events and say "this is how I have coped with that situation." We all have our favorite coping strategies. I have heard that loud and clear about you Arlene. You said the last time " I just get to work and stay busy." [Arlene nods]. And then you can ask yourself "Is that helpful?" and "When is that helpful?" or "Is that something that you still do?" and "Is that something that you want to change or not?" So this becomes a process of self-awareness. [The group became somber as women appeared to be processing the discussion and potentially reflecting on how they have dealt with past events including MI ] . Your Health and Experience of Ml and Recovery In the first GA theme, women were asked to reflect on their experience and recovery from Ml within the bigger context of their health and illness history. Sensitizing questions included considering health throughout the lifespan (including the health of family and friends), familial attitudes towards illness, coping strategies, the physical and emotional impact of Ml, and changes in self and body image following Ml. (For a complete description of the GA themes and sensitizing questions, refer to Appendix F). Five of the participant's narrative accounts will be presented in this section. While Sally and Margaret did not bring their GA writing to the group, Sally submitted her narrative the following week. This has been included without group feedback following Sarah's account. Arlene. At the age of 18 I lay in a hospital bed. I was 6 months pregnant and weighed 89 pounds. I was feeling sorry for myself as I had contracted a syndrome called Gilliam-Barre. It [was a paralyzed] nervous system and I was unable to walk and my movement was restricted in other ways as well. The doctors predicted that I could spend the rest of my life in a wheelchair. There, lying in my hospital bed, I vowed that I would dance again. With the help of a blind physiotherapist, I was able to keep my muscle mass and 80 eventually the day came that I stood up, on my own two feet for the first time in 5 months, and they moved. I felt SO tall! I was ecstatic as I knew I would walk again. I was released from the hospital to spend Christmas at home with my family, then early January my son was born. I was given lots of help and love from family, friends and the church, and my recovery started. Then came mother's day, and my poor little son never woke up (Arlene gets teary saying 'that hit me.' She continued to read choking back her tears). I was devastated and just wanted to go to sleep myself. My other daughter was neglected, I would not eat and the only thing that gave me back my will to live was the knowledge that a nervous breakdown would weaken my system so much that I would always be weak which was something I did not want to live with (choking back her tears 'funny this is doing this to me'). So, again I picked myself up and started, one day at a time, to live. It took two years before I was strong enough to hold down a full-time job. I did a lot of volunteer work and walking. The strain was too much on my young marriage and I left my husband. Determined to better myself I began a correspondence course to get my Real Estate license. It was the only way I could think to give my daughter a good life and support her with no father. Then out of the blue, my car was rear ended and I suffered a compressive fracture at the 6 t h cervical. I was unable to work for 6 months. Suffering with migraine headache and tiring very easily, I pursued my career, eventually going to UBC to obtain my real estate agents degree. Six years later, I met a very talented man who caught my eye and we eventually moved to Alberta and after several years together we got married. The relationship was very difficult as there were never any disagreements or arguments, just huge catastrophes. I started to get sick again. My left shoulder started to burn with pain. I was scared my illness was coming back. Then I developed a hyperactive thyroid. The next year was a bladder repair; the next my appendix was removed. Then I developed insulin dependant diabetes. I joined a support group to try to understand more about this terrible chronic illness. I resented that I had to change my life, which meant I fought it every inch of the way. My marriage became more strained and I could not work the hours without stopping to eat. I could not do errands without turning around because I was having an insulin reaction. My endocrinologist suggested that I must change my life style or I would not live another 5 years. The stress was becoming too much. So, I decided to leave my husband, my home, my business, my life and start again. 81 I moved back to BC and settled with my brother. One day while riding my bike around the park my right foot started to ache terribly. I had a giant cell tumor in my right ankle. It had to be operated on and I ended up in a cast and on crutches; just another hurdle to overcome. Then I decided to change my job. At 50 years-old, would someone really hire me? I ended up securing a great job. I really enjoyed what I was doing and worked long hours. After 2 years of proving my worth, I was promoted. The new job would consist of travel and office hours; a first for me in years, but I was all set for the challenge. While away at a recent seminar for a new job, Arlene suffered a Ml. I had a heart attack (sobbing). Me. How was that possible? I could have died. What lessons am I not learning that I have to continually have these devastating health problems? What new weakness will I have to live with? What new restrictions? God, will it ever stop? (still crying) That's it. I guess I needed to do that. Facilitator: What are you aware of right now? What was that like to read out? Arlene: Well it started with the life line. I think I could of have handled it if it wasn't for that. I had so many major illnesses and I'm just so angry (sobbing). I don't want to be sick anymore. Facilitator: Thanks for reading that I could tell it was tough for you. Helen: I think you must be incredibly strong. I think I would have given up. Facilitator: From everything that I know about you so far, you are someone that just gets back to business. " I just want to get back to business and this is going to be hard for me but I am going to sit here and do this." And that's what you did and I could tell it was painful and it took courage. [The group is quiet and smiling at Arlene in support]. Arlene: I don't usually show tears so I guess it was a healthy exercise. Facilitator: And the f i rst thing was being 18 years-old in the hospital and you saying T will dance again.' I thought this is one determined woman. And your son died. And then you carried on with the real estate to provide for your daughter. Helen: And she is so young, she's 19. That's like a child (shaking her head in empathy). Researcher: One of the things that stood out for me was you talking about 'standing tall.' And I think about the number of times you have had the chutzpah to recreate your self and let go of things or to take steps forward and recreate yourself. I'm amazed at your resilience and strength (Arlene laughs) and determination and also how success has followed your losses. You also experienced a lot of success. Arlene: Yes, too many. It's harder the older you get to bounce back. I'm finding it harder this time to bounce back. 82 Helen: I t hasn't been very long. Arlene: No, I'm impatient (laughs). [The group laughs]. Bev. Bev prefaced her GA narrative with another story of a recent accident where she had fallen head first down slippery porch stairs. I remember going head first down the stairs thinking all the way down that this is it for me. That my life would end on this day and I remember thinking, my husband who was recovering from some strokes, he's going to find me either dead or paralyzed and I won't get to see my daughter get married [the group moans]. And my son was graduating from university in a couple of months and I thought I won't get to see that either. So in thinking about my heart attack and all the things that have happened in the last 5 years, and there have been some pretty devastating things, I'm thinking about my heart in a different way. So I just want to read this last part. In the first few days after I had my heart attack, I found myself crying at times. At first, it was out of relief. I was relieved that I had survived. I was relieved that now there was a name that I could attach to those vague and troublesome signs and symptoms that I had been experiencing for months. My secret fears of a heart problem were now confirmed and had been treated. I cried because I am extremely close to my husband and children. I enjoy being around my children and I worried that I might not be around long enough (voice wavering) to see them realize their dreams, to attend their weddings, to hold my grandchildren (starts crying), to watch them enjoy their own families as much as I have enjoyed mine (sobbing). My husband has had many health problems with two bouts of cancer and three strokes as a result of the radiation treatments that he received for his brain tumor. I had always been the healthy parent throughout my children's lives and now this has happened to me. My husband's father had suffered a massive Ml when my husband was twenty-one and had died and now my youngest son is twenty-four. I wondered would he be loosing his parents at a young age. I cried because I had never taken medication before (voice still wavering) and now I had this chronic condition for which I would forever take pills. For the first while if managed to sleep, I would envision my stents. They seemed like steel culverts or steel gates and I hated that they were in my heart. Then despite that nasty hematoma I began to walk again. I went back to my daily routines. I decided that I would not let myself be defined by this experience. I talk freely with my husband 83 and somewhat less so with my grown children because I do not want to unduly burden them. I have not let the fact that I will probably need a knee replacement in the next 10 years define me nor the fact that I will probably lose the sight in my right eye. I now look at life with fresh eyes or fresh eye and a half. I am doing all that I can within my power. I reckon that none of us know how long that we have to live and I have a deep and abiding faith that the length of time has been predetermined by God. I have helped myself by helping others as much as I can or as much as they want me to. I now look at my heart as a pump only. One that was defective for a time but one that has been patched. What is most important to me is that I love and I am loved and that's what I feel is the true function of my heart. When I think of my heart now, I don't think of the medical model now replete with stents but I think of the Valentine's model and that its function is to love. Without that love even with a healthy, undamaged heart I think that I would only be existing. Facilitator: Bev what are you aware of? What was it like to read that? Bev: I think of the impact that my death would have on my family (still crying). I wasn't crying for me, I was crying for them. [The group sighs]. Researcher: It sounded like your experience of the fall actually had a stronger impact than your MI. That you might not have survived. Bev: Yes it did. After I fell, for months I relived that every night. I saw the accident. I found myself going down and I heard the terrible crunching in my neck and thank goodness for that soggy saved my life. I think that fall was more devastating because I really did not think I would survive it. I was already prepared before I hit the bottom of the stairs that I would be dead. The fact that I survived it and didn't tear my favorite pants was really good (laughs). After I had my heart attack for a few days I was envisioning the stents in my heart and just hating them being there but I don't see that anymore. It was maybe a week or two and that was it but the other thing lingered for along time. Margaret: Listening to you talk about love and being loved started to make me cry because I'm missing out on that. I don't have children. I don't have a significant other. That really bothered me when I was in the hospital (Margaret begins to cry). My roommate had kids and a husband and I had all the friends but no significant other taking care of me and worrying about me. So hearing you talk about knowing the purpose of being here was to love and to be loved. I agree with that but unfortunately for me it's not there. Sarah: I would prefer to die. 84 Margaret: Well I don't know if I prefer to die but... Helen: I think it's very wonderful that you enjoy your family so much and that they enjoy you. I think it's a real gift. And that you are so close to your husband and your children. I t 's very very beautiful. Bev: It is. I really cherish that. Researcher: The f i rst time I met you, you talked a lot about your family and I thought this women's family is central in her life. Sally: I noticed the same thing about family because I'm so close to mine. I lost a sister 19 years ago and they're scared they're going to lose my other sister to the drugs. I just don't want a heart attack that is going to kill me. I can't go before them because we are so close. Sarah: I also had the same feelings around family. We are very close to each other. I am here but I don't want to tell them what happened because I don't want to make them worry. They cannot do anything. I love them very much. Two years ago, my brother passed away and they didn't tell me. They knew he got cancer and he had 6 months more and they didn't tell me. I t was really bad. Helen. Helen introduced her narrative by showing the group her artistic and colorful writing journal that contained her narrative. "So I do mine a little differently, I made a book, 'Beckoning the Heart.' I'm thinking about the journey of recovery and discovery and I really wanting to draw forth on the emotional component of this story." [Women express their amazement at Helen's colorful and creative journal]. My Health and My History and the Heart Attack. The image of myself has always been of being physically healthy. I grew up in the country with lots of recreation and physical activity...hiking, biking, skiing, swimming, jogging, sports, etc. and I have maintained physical activity of some kind, that is being in good shape all throughout out my life. In fact, it is something I value in others and I'm proud of it. I'm iooking forward to enjoying that part of myself as I grow older. Consequently, I'm very conscientious about diet, bone care, joint care, weights and yoga. My frustration is truly a lack of hours in the day and prioritizing. Trouble is there is so much I love to do and want to learn. I want to do it all so to speak. My body has never let me down. It's a strong body and I haven't abused it very much over the years. Never smoked, didn't party hard, ate well, slept well, etc. I seem to recall a few childhood illnesses, whooping cough being the worst. I think my health problem is one of more an emotional issue or psychological. I have always, for as long as I can remember, been someone who over extends. I'm 85 always and always have been busy doing things I love to do. Maybe this is healthy too in that it is usually my choice. I don't do much that is not my choice except when my husband left. That was definitely not my choice and that broke my heart and was without a doubt the sickest and weakest I have ever been. It took me years to recover and I can still feel the pain and sadness and sometimes anger and bitterness way down deep every once in a while. But I didn't tell that story now. I was extremely outrageously busy when I had the heart attack and I had worked very hard for years prior to that. It goes something like this and I'm working backwards: On Thursday Oct 6 at two o'clock in the morning I had my heart attack. That Thursday evening I had been at parent teacher interviews for my class; the previous Tuesday evening I was teaching a class at UBC as well as being a full-time classroom teacher at the time with a struggling student teacher who wasn't coping well; prior to that on that Friday to the Sunday, I made a quick trip to the interior to put my mom in a care home and close down her apartment and brought all of her furniture to the coast; driving a one ton truck with everything in it which in itself, through all the mountain passes in October, was a little nerve racking. But I just kept doing it. Professionally, I had been climbing the ladder of success with a new and different job opportunity almost every year for 6 years as well as I completed a Masters degree...achieving a 92 or 93% grade on a thesis while teaching full-time and being a single parent. So for a long time I was pushing pretty hard. And I still can feel tears close to my heart when I think of how hard I pushed myself. Why did I push so hard? Why did I do that to myself? I wouldn't ask my best friend to work that hard. But on the other hand the one thing I have to say is that my career has been somewhat charmed in that I have always had opportunities come my way over and over again. It's like my career unfolds and yields abundance for me in spite of myself. I do nothing and opportunities appear to happen. So I never said No! They are all neat and exciting opportunities. The actual heart event happened during the night. I work up with an acute pain in my back. I woke my daughter up. I knew this was not normal. I couldn't get relaxed. She called 911 and the ambulance came. My whole hospital experience was wonderful. My friends and family all gave me love and care. My initial recovery was quite a quiet, gentle, and beautiful time. I did absolutely nothing and for me that was unbelievable. Until I finally felt motivated and then the only creative thing I could get going was to knit socks and I totally enjoyed knitting. My partner at the time took great care with me and of me as did my daughter. My mom had a stroke that Christmas...but survived. 8 6 I had to wait 4 months for an angiogram which of course was normal but during it my artery began to spasm and so the doctors assumed that this was my problem. I have had calcium channel blockers ever since. There really hasn't been any explanation why this happens or what to do to prevent it. Of course I don't really know either but I have some intuitive hunches about it all. My mom has heart issues and they run on that side of the family. So I am probably hard wired for it but I think there is more. I'm sure my emotional psychological spiritual self is also part of the equation but none of it is neat and tidy. Nor does it fit into a box. Rather it's bits and pieces of my story and it's all pieced together. Helen showed the final page of her creative journal. Today I ran the 10K in an hour and fifteen minutes. Not bad and it wasn't too hard. It was very enjoyable and I thought about trying to get my life into better balance. And I thought about how disciplined I am or am not. And I thought about all the people...that have defined my life. It really is about the relationships we create in our lives. The relationships, at least for me, are what I keep coming back to over and over. I want a new loving relationship but not yet. [A few women stated they liked how Helen had done her journal]. Facilitator: How was that for you? Helen: Pretty good. I love it when I get to work with color and get to express myself visually and writing wise (pauses) but I don't think I've addressed the emotional parts of my history. I keep touching on them but I never get to go through it and maybe transform it. And consequently it keeps coming back. Recently I'm beginning the menopause journey and from the reading I've done they suggest that if you have unresolved emotional issues, and you thought PMS was bad, they are going to really wallop you. It's true, some of this stuff, like my divorce is probably 15 or 20 years ago. A long time ago and yet sometimes it can feel like it was yesterday. And I go what about all the stuff I have done in the 15 years since. It's like none of it matters compared to that. So emotionally I think that's interesting just to not be afraid to go to the emotional places and try to heal those or patch them up a bit. It has been 3 years for me since the heart attack so I probably am not as maybe wounded - it might not be the right word. I do remember the first year after just building my confidence and taking things really slow. All I did was teach. I only did one job. I enjoyed that actually I remember thinking I had not enjoyed my teaching in that way for a long time since I was a new teacher. And I really kept my life in good balance. I was going for massage. I was walking. I just didn't ask that much of myself. But I also got a little bored. This is very nice but I'm bored. So now, 3 years later I'm not back to where but I am pretty close to where I was in terms of busyness. Its not things that I don't choose to do. I choose to do it all. And it's all wonderful and exciting and interesting and my job is great and I've got all kinds of great things happening but I'm noticing that I will schedule...most people will schedule one thing to do in a day. I will have five and will go from one to the other to the other to the other and the fact that I was able to do this, this and this. It is kind of a weird way to be. But that is how I know myself and I don't dislike that part of me but I think that it's not a great way to be. It's not a bad way to be, I just think I need to achieve a bit more balance and I don't know quite how to do that. I don't know what to let go of. Facilitator: I t 's hard for you. That really came through just how much you want to do everything and how well you do it. Margaret: What stood out for me was that I am the complete opposite. I was doing a lot of jobs prior to the heart attack but once I had it, I didn't want to do anything. The hardest aspect of everything was the financial issues so I had to get back even though I didn't feel up to it. I had nobody to help me do anything. So you were talking about having lots of friends and family helping you with everything and being there for you. I didn't have that. And talking about your heart going into vasospasm and why did that happen and is it going to happen again. I go through those same issues because that was the same as me. They don't know why I had a heart attack. My heart went into vasospasm and then into VTach. And they can't say it won't happen again and that is what I struggle with. Helen: I think it's about managing the variables that you can. I have a hard time managing this variable of being passionate about my career, my art and my music and somehow marrying them. Researcher: But it's not as straight forward as minding your cholesterol or doing exercise three times a week. Helen: I do all that. That's the stuff that fits into a box. I can do the physical stuff real well. The emotional stuff is really difficult for me. Facilitator". I t really came out clear that the loss of your husband is still a question for you. Helen: Yeah well it comes and goes. Facilitator: I also hear, 'How can I embrace my life fully after MI'? 'Can I still do it'? I want to. Helen: My life is really full but it's not in balance. I'm trying really hard to get it in balance. I mean what do I let go of because I don't have anymore time? I know I should spend time relaxing. Sally: Do you make time for family and friends? Helen: Yes I do. My daughter lives with me and so I make time for her. I make time for my mother who is ninety-four and my friends... not tons of time but I am available for them. 88 Margaret: Doesn't sound like you are. Sounds like you have no time left. Helen: Well, I guess it depends what you do with friends. I don't go out and party. Sally: Lunch...window shopping. No little social thing. Helen: No I don't do that. My social thing will be I run with people, I jog with people, I play music with people and I do art with people. But I don't sort of just come and visit I guess. I probably should. I should probably be much more available for my friends to just call up and say 'Hey what are you doing?' They probably know not to do that because I am usually not available and some have even said 'you're never available to be spontaneous because you are busy'. And I say 'Ok I'll be spontaneous what would you like to do?' Margaret: I'll be spontaneous next week at 2 o'clock. [The group laughs]. Helen: (Laughs.) What would you like to do...and the option? I don't go to bars very much. I don't know. It's like the options presented aren't as appealing and the things that I really enjoy doing. So I end up not doing them. Sally: Yeah but just going out. Stop and smell the roses. Like let's pick an area. You live in Kits or something. Let's go down to the West End and we'll browse in all the shops and stop and have a coffee. It's amazing because I feel like I'm on holiday when I go to another neighborhood. It's interesting to see all the shops. Facilitator: So Sally is that something that you've done before the heart attack? Helen: Yeah that's a good idea. Arlene: I'm terribly spontaneous. I love doing things on the spur of the moment. Like going to a dinner theatre. I like the arts too. Just kidnap someone and let's go. Facilitator: So Helen what I hear in your story is that I want to do it all and I like to be busy. And I want more relationship or I want something closer. Helen: Yeah but I've been in a relationship for about 8 years. A very challenging relationship and I'm not totally out of that relationship but it's not the relationship I want to be least not in that capacity. That's a whole other story. Sarah. Sarah prefaced her illness narrative by telling the group why she had come to Canada. She speculated that her heart attack occurred as a result of the "bad things that happened" to her and then described a series of tragic events that occurred while still living in Iran. I have summarized this dialogue and included her illness story. When Sarah was 28 years-old, her fiance was shot and killed by the government. For several years, she remained housebound and could not go out. Sarah spent 6 months escaping 89 [from the government]. Eventually she began to work and attended university to become a child psychologist but the onset of the revolution forced her to leave school. During this time, she became involved with a divorced man who had two young children. She agreed to work for him and managed his office for 7 years. She also worked with his daughters, who she described as being "very bad before" but became "very good children." After 7 years with her boyfriend, Sarah was blackmailed by a co-worker regarding a recent abortion. She explained that sex without marriage and abortion was illegal in her country and if discovered could result in being "stoned." Over the next 6 months, Sarah paid her co-worker, whose husband was with the secret police, large sums of money. She explained the following: Some people work with the government and they can do anything they want. In my country, somebody who has a connection can say you did a job...which you did. That's fine. That is enough to kill you. It's that dangerous. So I couldn't do anything. My boyfriend said you have to go away. She started asking me for more money. I had a lot of money invested in the office and she knew that because she was the assistant accountant. So I escaped. Sarah traveled to several different countries before arriving in Canada 2 years later with a forged French passport. Shortly thereafter, she discovered that a brother back home had died of cancer. Her family had not told her he was sick for fear she would return and be apprehended by officials. Sarah acknowledged not knowing whether she could safely return to her country now or at the time of her brother's illness. [The group was attentive and expressed shock at the intensity of Sarah's experiences. Several participants asked why she did not marry her boyfriend. Sarah continued to discuss her relationship with the group]. I didn't have any major illness until the age of twenty-two when I developed rheumatism. At thirty-eight, I had an inner ear infection which affected the labyrinth in my left ear and was not quickly diagnosed. It almost left me paralyzed. I was in my country and my family took good care of me. I witnessed my father's heart attacks six times with my mother and my brother. We have a family of heart problems and high cholesterol, but I was told that it will pass only to the men of the family. My heart attack happened on the sea bus. I was going to school. Prior to my heart attack I was stressed out. For almost one year, I was highly stressed and worried. I could not sleep or be relaxed. I was frustrated and very tired of not sleeping. I had an unforgivable experience when I had my heart attack on the sea bus with paramedics. 90 During my hospitalization, everything was good. The nurses were very friendly and kind and they took a good care of me. At school, nobody helped me deal with my financial problems although they knew I should not be nervous. After 3 months, I joined the Health Heart program at the hospital. After I was discharged from hospital, I had a hard time coping with my worry about the future. I was always thinking that I will not be able to work like I did before and employers will not hire me. Two years before I had my heart attack, I lost my older brother. I was here alone and did not have support of family or close friends. I experienced severe depression and my doctor recommended that I take Prozac. A year before my heart attack, I experienced pain in my shoulder and left arm, but my doctor said it was because of my depression. I had psoriasis when I came to Canada, but after 2 months my skin was cured. I did not have any skin problems until I started studying at the college. The course was full-time and I needed to work very hard. I felt stressed by some of my teachers and one of my class mates. The result was my early heart attack. Now, my psoriasis has come back. Whenever I get worried, my skin starts itching and getting irritated. It is getting worse every day. I always had a good nutrition plan. Before I came to Canada, everything I ate was organic. No additives or preservatives are used in my country. Also we do not have such different kinds of cheese. Here I have eaten lots cheese daily without exercising. Before I was very active, but here I am not. Now, I have been trying to walk every day, exercise at least three times a week, and only use low fat foods and more vegetables and fruit. Sometimes I have a little chest pain, especially if something bad happens or even when I am watching a movie which is like my life. I use Nitro spray and it works. My heart attack has had a very strong impact on my life. Although I have tried not to be worried, I do worry. Whenever I go on the sea bus, I remember that no body helped me when I was dying. It does not [allow] me to trust people. I have the feeling that I am alone and that nobody cares about me. I have nightmares. I see myself alone and naked in darkness. I am scared to go in the dark or I see myself lying down on an operating table and I can see my chest is open. People are operating on my heart. Then they forget to close my heart and I can see my heart moving. Sometimes, I see my brother with me. He had open heart surgery and wants to take me to see a good doctor. I can see his heart and my own heart. In my culture, they say that if someone is dead and you see them in your dream and they ask 91 you to go with him then you are there. My roommate comes and knocks on the door to wake me up from the nightmares. I am scared to move when I am sleeping. I am worried about my stents and I think they will break. I get tired very fast and it makes me mad. Every morning, I feel badly because I must take my medication. I think that the heart attack has ruined my whole life and I hate it. Why me? I feel I have to live alone because no man wants a woman who is sick. Facilitator: You said you thought there was a link between your heart attack and your story. Sarah: Yes, because I think I was abused for taking care of his children, taking care of the business...everything. How come a man takes everything but doesn't give anything except money. He paid all the expenses. I had a lot of money in my country and I wanted to come here. But he couldn't marry me (raises voice). Helen: So he paid you to come here and go to Malaysia. Does he help you to live here? Sarah: Yes, but I wouldn't accept his money to live here. Helen: He won't give emotionally to you. He won't marry you and he won't come to see you. Sarah: No he has another girlfriend now, after I left my country. He has the right to have another one. I left him. Facilitator: When I heard your story I was struck by the level of stress in terms of dangers. What was it like to tell your story? [Several group members nod their heads in agreement]. Sarah: At first I didn't want to tell this but after I heard the stories I thought we are here to share everything and I should trust my group. Facilitator: That seems amazing given what your story was about with the level of secrecy and danger that you experienced. Sarah: That is why I asked for confidentiality. Margaret: I just admire the strength of the women so far telling their stories. Everything that each one of you has gone through it amazes me that you are here today. Especially you (looks at Sarah). Sally. As a child I had a very happy childhood. The only illness I had was tonsillitis. I had them removed when I was 8 years-old. When I was sick, my mum pulled the settee out and I lay there with a cup of tea and a magazine of my mums which was special. When I went into hospital, it was a four bedroom, not a ward, and I got to pick the bed beside the 92 aquarium. It was beautiful in the dark all lit up. As a teen, in winter I had a few ear infections. We had a great family doctor. My mum never seemed nervous when she needed an operation, neither did my dad. I think that's why I have been okay before operations or being sick. Mind you, this time is different only because I haven't bounced back as quickly as before. I'm really enjoying the Healthy Heart exercise program. I'm learning a lot, but I still tend to push myself. I have to learn to say no and take time for me. That includes eating on time and right. Although Sally did not read her narrative in the group, I have included my comments in response to her story. In general, I was struck by her guardedness of expression. She said little about her lived experience of illness (including Ml) or how she was impacted by surviving a life threatening event. In this sense, her story felt vacant of her adult self. Margaret also stated she had forgotten to bring her narrative to the session. She described having difficulty remembering details of illness events and struggled with the process of writing, perhaps questioning whether she was 'doing it right.' Despite being active in the group discussion, Margaret often compared herself to those she was giving feedback to with an underlying tone of self-judgment. For example, she believed she had less of an interesting life than others, less support, less care while hospitalized, and perhaps less of an ability to write. I sensed that Margaret felt uncomfortably exposed in the group and perhaps believed she was not worthy to be a participant at this time. Group Check-Out Following the reading of women's GA accounts and group feedback, the facilitator conducted a brief group check-out as participants were encouraged to comment on their experience of the session. While two women acknowledged that "it was amazing to hear [other women's] stories," Sally expressed her concern that the group felt like therapy and that she didn't understand the facilitator's practice of exploring participant's feelings following the reading of their narratives. Sally. Yeah the stories were nice. I didn't know it was going to be a therapy group where you said 'how did that feel to read it?' [The group became silent and looked at Sally]. Margaret: It does feel like a therapy group more than anything to me. Not that there's anything wrong with that but that's the feeling I get. Sally: I don't get it because most of the people have been emotional so that's what it felt like -quite emotional. So why did you ask? It's like going to the psychologist or whoever with a problem 93 and then they say 'well how do you feel about it?' Well I came because I need help. So I guess I feel frustrated. Facilitator: That feels like an intrusive question? Sally. Yeah maybe or just to me doesn't f i t after you heard someone just open up. Facilitator: That's good feedback. I will tell you the purpose of the question. When people write it is like a private experience. When you read it out loud it becomes a public story. We did notice that some people got emotionaL.something else happened. I t changed just in the experience of reading it. And so that question, 'what are you aware of,' is just to give you a chance to process that or not. While there were only a few minutes remaining in the session to address Sally's frustrations, the brief exchange provided the researcher and facilitator with an opportunity to further clarify the purpose of debriefing the GA narratives, thereby highlighting the differences inherent to private reflection and group witnessing. The facilitator also outlined the differences between 'doing therapy and being therapeutic' Sally's feedback also demonstrated to the group that it was acceptable to openly address individual concerns or issues with the facilitators. Alternatively, Sally's feedback could also have been construed as a challenge to the facilitator and more of a reflection of her resistance to engaging in the GA process, especially given she did not bring her writing to the session. Researcher's Process During this session, I felt more relaxed than the previous week. Mostly, I attributed this to more fully easing into my role as researcher and feeling confident that the facilitator was primarily responsible for facilitating the group. In this sense, I was able to focus most of my attention on understanding women's constructions of recovery. As well, it was heartening that all the participants returned for the second week. Given my lack of experience conducting GA groups, I was intrigued with how easily the process unfolded as women read their stories and provided feedback to each other. I was struck with the magnitude of emotional loss and intensity of living that was evident in women's stories as well as their resilience. Moreover, I felt that I witnessed the potential power of the GA process as participants shared their experiences and accompanying emotions (some for the first time) within the safety of the group context. I felt particularly moved by Bev's story about understanding the 'true function' of her heart and Helen's theory on the emotional and psychological origins of her (and possibly other women's) illness. Their messages resonated closely with my own evolving beliefs around emotional health and healing. Despite the significance of the session, I left the group having a few concerns. Given Sally's feedback that the group 'felt like therapy' coupled with the emotionality of the evening, I 94 wondered if other participants found the group and what they were being asked to do too emotionally intense. More specifically, I wondered if we were encouraging women to take the lid off their emotional selves without providing adequate support to process their experiences. In my reflections, I likened the experience to working as an individual counsellor to women that participated in a sexual abuse support group. In this capacity, women had the opportunity for further support to process what emerged in the group setting. I also revisited the question, 'when does research become therapy'? Ultimately, my biggest concern was whether women would be harmed emotionally as a result of the GA process. My counsellor self felt triggered in terms of my sense of responsibility given that I did not know how capable these women were in terms of their ability to contain big emotions given how quickly the first theme accessed painful memories. I also wondered if unveiling emotional pain in these cardiac patients would manifest itself as physical pain. Ironically, I ran into Sarah at the hospital the next day on her way to see her psychologist. She acknowledged needing Nitroglycerin following the group and believed that expressing her emotions while telling her autobiography had triggered her angina. After debriefing with both the facilitator and my research advisor, I was better able to explore my concerns about the GA process and research responsibilities. We discussed the importance of reiterating to participants to intentionally choose how much they want to share about themselves in terms of respecting their own sense of safety. This related to an important discussion about the parallel experience of women learning to pace themselves and focus on self-care as an important factor in their recovery. Researcher's Interpretations of Theme One This was another powerful session as women demonstrated a high degree of emotional intensity in the reading of their autobiographies, feedback and comments offered over the course of the evening. While the previous week focused on the exchange of detailed Ml information, this week's session continued to feel analogous to a lid bursting off a container as women expressed strong emotions associated with their experiences including the Ml event. In general, all of the items on the research session agenda were attended to as women participated in the Life Line exercise and the reading of their autobiographies. It was also evident that women exhibited interest and care for each other. For example, when Arlene arrived at the group not feeling well and with 'high sugars' other participants inquired in detail about her symptoms over the course of the evening. It was evident from the group discussion that women had different experiences of constructing and sharing their GA accounts. While Bev, Helen, Arlene and Sarah more readily constructed their first theme, Sally and Margaret acknowledged having difficulty reflecting on 95 and articulating their experiences. Women who did present their narratives also reported varying experiences as some had a significantly harder time reading their stories than they had anticipated. Whether this was attributable to the depth and meaningfulness of the material discussed, variable proximity to the Ml event or predisposing psychological factors remains unclear. Half of the women became teary in response to reading their GA accounts and providing feedback to other women. While Arlene's expression of uninhibited emotion may have been sobering for the group as she volunteered to read her narrative first, it provided permission for other participants to express a depth of emotion. This was evident as Sarah acknowledged that it was after hearing Arlene's story that she could talk about her own. While women may have felt vulnerable as a result of sharing themselves emotionally, the experience appeared to create a sense of intimacy within the group. As well, the group continued to define for themselves the parameters representing acceptable behavior and practice as research participants. Also emerging from this session was a developing sense of participant's personality style particularly related to emotional and cognitive processing. Simply stated, some participants appeared to be more comfortable and capable of providing insight and reflection into their illness and recovery experiences than others. Reflecting on women's rich and detailed narratives and dialogue, several significant issues emerged. For most participants, the Ml event appeared to be a sobering event that forced them to stop and reassess their lives. In this sense, most women had the sense of feeling changed the experience as they reported more physical fatigue, weakness, and a reduced stamina following their Ml. Several women described feeling more vulnerable while a few others acknowledged struggling with depression. These symptoms were more evident in the women who had their Ml within the year. Other women acknowledged having anxiety about the potential recurrence of cardiac symptoms or another Ml, uncertainty about the future, or feeling more connected to their mortality as they realized that they could have died. All but one woman reported being highly stressed prior to their Ml event. Women attributed their stress to various factors including situations that they had little control over such as recent significant health crises or the death of a family member; ongoing financial challenges and/or dealing with the pressure of school; or being overloaded in terms of working twelve hour days and/or juggling multiple work responsibilities. Each woman had experienced either a definable period of ongoing stress characterized by multiple stressors or endured a hectic schedule at the time of their Ml. I was also struck with the degree of emotional loss that was evident across women's descriptions. To illustrate, four women acknowledged being impacted by deaths of family 96 members, while other's described painful separations from significant others (partners), difficult life transitions, loneliness, personal health crises, as well as anticipated future losses. In this sense, much of what women spoke to was about changed, lost, or absent relationships with others. In response to dealing with adversity, a few women reported adopting the attitude, often passed down by family, of 'don't look back...just move on'. Consequently, these women often immersed themselves in their work as a means to cope. While this non reflective coping style had theoretically worked, current illness restrictions or the seriousness of the Ml event forced these women to reevaluate this strategy. I was particularly struck by one participant's story whose determination and strength or character allowed her to survive multiple losses and setbacks. Despite her historical unwillingness to reflect on the emotional pain associated with her losses, Arlene intuitively knew that stopping to reflect was a central piece of her Ml recovery and that the GA process was an important vehicle of support. The issue of support emerged in all of the participant's narratives and dialogue. More specifically, four participants acknowledged having strong support from family and friends during their Ml event and recovery. The remaining two women identified lack of support as a central feature in their recovery narratives which also reflected a significant sense of loss. One of these women commented that "no one would want to be with a sick woman," as though her worthiness as a potential partner was compromised since her Ml. Evident in her history was the death or loss of several significant male figures. Again, I wondered if women's preexisting emotional issues or concerns are heightened by the vulnerability associated with experiencing a potentially life threatening event. Interestingly, only two women were partnered at the time of their Ml; one woman in a heterosexual marriage and the other in a same-sex partnership. Again, the issue of significant relationships emerged in most of the participant's dialogue. Women also spoke to initiating self-care measures directed at improving their physical health as part of the early stages of their recovery. For several women, this meant self-referring to a cardiac rehabilitation program and exercising, while for others this included eating healthier and losing weight. Several women also spoke to the importance of trying to manage their emotional stress and suggested various strategies they felt would be supportive of their recovery including living a more balanced and present life, becoming more assertive, taking more time for self, slowing down from previously hectic schedules, and potentially further developing relationships with others. A few participants accessed their spiritual beliefs to help make sense of their illness experience and to guide them in recovery. 97 Guided Autobiography Theme Two Your Major Life Work and Recovery from Ml The format for the second session (and the remaining GA sessions) included a group check-in, reading of the theme autobiographies and group feedback, an introduction to the next theme, and a brief group check-out. While Margaret notified the researcher that she would not be attending the session due to illness, Sally did not indicate she would be absent but also missed the group. Group Check-In Participants were invited to comment on current functioning and any discoveries from the previous week. Considerable group discussion focused on sharing information and posing questions related to cardiac treatment and individual symptomology. For example, Helen asked participants many detailed questions including "Does it feel different lying on your left side than your right side in bed?" and "Can you feel where the stent is?" Arlene wondered "Does anybody know the statistics on whether bypass surgery always follows having a stent put in?" These kinds of questions were reminiscent of those presented during the introductory session. A few women described feeling very tired. Sarah reported ongoing sleep difficulties, potentially related to her medications, which have made attending school and completing homework very difficult. She stated that before the heart attack, "I enjoyed being with people, but now I do not. I love to be alone in peace, quiet and the dark." As well, she acknowledged becoming easily angered this week by others and aware of not trusting people, "I think people are just pretending to be nice and kind but they are not and sometimes I feel that everybody is wearing a mask." In part, she attributed her outlook to her traumatic sea bus experience. Helen also acknowledged feel very tired, irritable and short-tempered, and believed she was fighting off a cold. Having gone to work, despite feeling unwell, Helen acknowledged feeling a sense of 'responsibility' to her students given that their other teacher was also away. In contrast, Arlene described feeling happy this week and was excited about having just decorated her Christmas tree. She exuded a radiance that was evident throughout the evening. Arlene talked about starting an alternative remedy that is believed to reduce the aches and pain associated with diabetes and fibromyalgia. While Bev acknowledged feeling sad that a dear friend had died from cancer, she also discussed her recently improved health. I have felt so well I am just amazed (laughs) and I am really happy about it. I have energy that I haven't had in a long time. It's like I've been dragging an anvil for a long time and I've gotten rid of that and I'm really happy about that. 98 Having just seen her cardiologist, Bev spoke to the importance of receiving honest and forthright information about her heart health. She had also managed to ask her doctor specific questions that she was unable to think of while hospitalized. Both the researcher and facilitator shared their impressions of the previous session with group members. Your Major Life Work and Recovery from Ml In this theme, participants were asked to reflect on their experience of recovery from Ml within the context of their life work which could include career or other significant life roles. Sensitizing questions included considering factors influencing their chosen life work, the impact of Ml and recovery on fulfilling life work responsibilities, support needs related to life work since Ml, coping with obstacles that have impacted life work, and future plans. Five participant autobiographies will be presented in this section. While Sarah did not submit a written narrative, she opted to dialogue within the group. Consequently, I have transcribed her exchange and included the group feedback. I have also included Sally's brief narrative (without group feedback) which she submitted the following week. Margaret did not submit a written narrative. Bev. My career and life work have been altered many times and influenced by many factors. When I was really young, I always believed that I would someday be a nurse. I always believed that I had a nurturing nature but somewhere along the line I decided that I did not want to go into nursing. Instead I studied business administration and began working for a major company in Alberta in their public relations department. I was in a junior management position and part of my job required me to oversee the bus and truck card ads, to get stickers and posters out to various companies in the province, and to manage a school liaison program. I met my husband of 32 years. His work was in British Columbia so I left my home, family, friends, and work to move here. I did work for several other well-known large corporations in a similar capacity; however, I never enjoyed my work in the same way as my first major job. My husband and I decided that once we had a family, that I would be a stay at home mom. That's what we both wanted. In 1976, our daughter was born. Three years later, we had a son. Many of our friends and acquaintances at the time chose to do the same thing. Many of the women were nurses and teachers who put their careers on hold to raise their children. 99 As a stay-at-home mom, I still managed to be involved in the community in many ways. I volunteered for many organizations, co-taught prepared childbirth classes and continue to take evening classes. When our youngest child was about ten I went to work for the school board. This was the best of both worlds. I could work outside the home but I could also be with my children during the summer and statutory holidays and professional development days. I worked there until several years ago. In 1998, my father was dying of cancer so I traveled to Alberta in May to spend the last 3 months of his life With him. In August of that same year, after my dad died, my mom was critically injured in a ranch accident. I had returned to my own family only three days earlier so I returned to Alberta to attend to my mom. I wouldn't be able to return home until November. My job at the school was held for me in my absence and I felt both flattered and guilty. My mom had been injured so soon after my dad's death that I hadn't been able to even mourn his loss. Upon my return home, I found it difficult to return to work, although I have always believed that once I stepped through the door at my place of work, no matter what was going on at home that I gave my job my complete professional attention. In April 2001, my husband suffered two strokes, one at work and one in the hospital. September 1 1 t h took place and my daughter's fiance fell apart' and refused to seek treatment. After much soul searching, my daughter called off her engagement and marriage so we were trying to comfort her too. I took early retirement from the school board because I felt disconnected from what I was doing. I needed some time and space. I needed to take care of myself and my husband. Two months later, I had a devastating fall, head first fall from the landing of our back stairs and had some of my own physical and mental images to confront. I had been working with a teacher friend of mine who had started a small catering business some eleven or so years earlier. My physical recovery put a halt to my work for several months. I have always been very strong mentally and have always worked hard to confront my fears and concerns. I have a wonderful support network of family and friends and I have never been afraid to ask for what I need. It's been 3 months since my Ml. I help my friend for a couple of hours twice per week with the baking and catering. Baking and creating delicious and nutritious food is something that I'm good at and that I enjoy doing. What the future holds in unclear at present. Perhaps I will become a full partner in my friend's business and we'll expand, perhaps not. My husband plans to retire in about 100 a year and a half or so. We may travel and do some of the things which we were unable to do before. My mother-in-law and my mom have some health problems, particularly my mother-in-law who turns 90 years-old in January. I have not made nor am I going to make any firm plans as many twists and turns in my so-called career path have changed my circumstances and greatly influenced what I have done. I would never have altered my decision to stay home and parent my children, together with my husband. Nor do I regret spending time with dying or ailing parents. I can never point directly to something that I've published, nor to a building that I've erected, a statue that I have carved, but overall, I have been satisfied with my life. I have raised two wonderful, compassionate, capable, responsible young people who have gone on in search of their life's work. No monument or building could ever compare. I will continue my quest to be the best that I can be, help out where I'm needed, be a loving wife, mother, daughter, friend and neighbor. The need in the community is great, my strength is returning so I plan to do as much volunteering as I am able. I don't know what the future holds but certainly my husband's health will dictate some of that and his father passed away of a massive heart attack when he was fifty-six. His father had a very successful business and he was a very busy man. He and my husband's mother had always planned to retire and do all these wonderful things. Well they never got to do it and my husband is very mindful of that and given his health situation we both want something different in our life. So where that takes us I don't know but that's where I am right now. Facilitator: What stood out for you in your own story when you were writing about this theme? Bev: I don't know really. As I say, I'm quite satisfied with how things have gone. I guess I have a very nurturing nature and so at one time I thought I would be a nurse or a social worker and then somehow I went a different way. But at every turn, even though I haven't actually done those jobs, I'm involved in helping in that capacity. Facilitator: Yeah it is a really strong life role. Bev: Yes. That is where it's at for me. Facilitator: You talked about twists and turns and the job that you loved and made a choice to leave. This sounds so much like a woman's story. For example, loving your job and making another major decision that had to do with nurturing and caregiving and those of kinds of choices based on that value. And the dilemma in that of trying to do both of those things or when you do make the choice sometimes asking 'what didn't I choose' or 'what was the path not taken.' And I think when you get 101 to a certain age, there is always that question 'what is the path that I didn't take' and is there something still to do about that?' Bev: My life experiences are so rich. I am very grateful for all of that because I have done so many things. Overall, I am very satisfied with my life and if it ended tomorrow I don't think I would have any regrets. I don't think, 'oh gosh if I had only done...'. I mean there are a few things that I wished I looked at more when I was there but overall I still feel that I have a lot of life left but I don't look at it with regret. Arlene: That's a pretty powerful statement. Not very many people could say that. I t 's not just the commitment to that but not feeling that you have been cheated because a lot of people think T could have done this and I could have done that' but because of whatever...I didn't. I t 's nice that you feel filled. Bev: Yeah. Well it was a choice that was really made. I think sometimes people feel they should do something and so they do that but there is always that part that resents having been forced to make that. My commitment to change what I had originally thought I would do was done freely. Arlene: Your husband turned out to be a great guy. Bev: Yeah he is a great guy. He's not the stoical nice guy that people talk about. No, he really is a nice man. Helen: I would have liked to have your life. Bev: I feel really blessed actually. I think part of this is that I grew up in a family where I had my grandparents and my great grandparents all either under one roof at one point or in close proximity. When you have that many arms telling you how special you are from morning to night (laughs) it's pretty special. Helen: A nice thing to experience. Bev: I wish it for all people but unfortunately it doesn't always happen. As I say, I feel really blessed. My husband also grew up in a really loving and nurturing family and so he's gone on to be a good husband. And that was my goal is that my kids grow up to be good partners and that they be responsible people and whole people and not always feeling that there is some part missing. Facilitator: That's a life work role that is obviously very strong for you; the nurturing role and the parent role. Helen. I am a teacher. I am a learner. This is my life's work and my passions. I did not always want to be a teacher, in fact, I didn't really know what I wanted to be other than loved 102 and love in return. My daughter led me to the world of children and I transformed into an elementary teacher at the age of thirty-nine. However, there's more to it. Actually, my mother taught me the value and importance of creating everyday. She showed me how to make the everyday ordinary into extraordinary and I became an arts teacher. Not just visual art but more an approach to the whole philosophy of learning through engaging one's hands and creating; a process that motivates learning in all the subject areas. As my career developed, my passion for the arts in education grew and for a few years, politically the system seemed rich. And then came the cutbacks and of course with that went art and music programs as if none of it mattered. Luckily for me, my career is charmed and I'm always able to find a niche myself and I flourish. I'm continually growing and developing as an arts educator and arts in education advocate. Still it takes its toll, the continual justification for the arts in a system of incredible bean counting for accountability about that more valued and important subjects in our curriculum. Meanwhile, children are killing each other, are overweight and don't listen or don't know how. So I'm a very hard worker and very passionate about what I do as a teacher. I teach kids, adults and teachers about thinking creatively and in the process maybe do some healing. When we create we're happy. I don't think any of this had anything to do with my heart attack...well maybe the passion had something to do with it. I've pretty well achieved my career goals to date and I'm in the process of creating new ones for my retirement years. At present, I'm becoming a musician. I'm very goal oriented and I keep on learning and achieving. Luckily for me, I had never been sick in my career so I was able to take 4 months off. I slowed down for about a year and a half after the Ml but now I'm pretty focused again on achievement. So, I think my challenge is to learn to live more fully in the present moment...more balanced and yet, at the same time, continue to grow and develop and maintain my passion. I often wonder if I keep myself so busy because I'm alone. Probably...but it's not so bad. I really enjoy all the things I endeavor to do. My career does present some challenges. Teaching itself is exhausting work. It takes a lot of energy. And I feel sometimes locked into it. I'd like to live in a smaller town but I'd have to start over with seniority so I'm planning to leave teaching by the age of sixty. I started late and so I'm a bit behind pension wise and financially, but I guess it's all relative. 103 There have been lots of changes in my career. I've had many different teaching experiences and I've never found any of them to be too much. They've just been another opportunity to grow and usually interesting. In fact, I've liked all the changes that I had very much but I must also learn to discover who else I am or what else defines me besides teaching. Arlene: I think you make an excellent teacher. Helen: Not today. Go away and leave me alone. [Several women laugh]. Bev: They need to see that too...that you are a real person and that you have days where you are not as energetic or you're not feeling well or whatever. Because sometimes I think kids think you come with the room. [Several women laugh]. Helen: But it is hard to function as a creative person in a system that isn't a very creative system. It purports to celebrate or support creative thinking but it doesn't do very much in it as a system to spit out really creative people. I mean it just perpetuates itself. Researcher: Are you saying that being a creative person in the system is hard work? Helen: It is draining. The advocacy role that you have to continuously play is draining. Will we never understand this? This boy was just killed on the weekend. How can this possibly be happening in our world or in our schools at this time? I find it amazing. At the same time, politically we are ordered to count more beans. Some of it is very valid but lots of it is totally ridiculous in order to fulfill these goals that are also imposed. Facilitator: I heard that your story was about passion. Helen: Oh yeah, I'm passionate about it (laughs). Researcher: And now the frustration because you care that much. But also there was something you said recently; the frustration of feeling that you are alone in this and the frustration because the system isn't balanced. I had this picture of the system as the body. So how do you manage that stress? Helen: I'm very fortunate because in my career although this is happening, I still am singled out to do wonderful things. I get to do all kinds of creative things personally. Facilitator: I think it is also important when you are doing heroic work or pushing the system that you need to find other kindred spirits. When you do it alone you are part of the weight of that trying to change things. Arlene. 104 In my early twenties as a single mother, I knew that the only way I could give my children a home was to do a job that a man could do. So after researching the work field, I decided to go into real estate. For 25 years, I pursued the next sale. I was always hustling the next deal. I worked long hours and tried to put some of my earnings back into myself through education. I bought a home for my children and myself, owned my car and was able to have my own schedule which was good with the kids. I also ended up spinning my wheels a lot. Twenty-five years ago when you sold real estate you didn't have the cell phone or pagers and when the phone rang you had to run. All I lived on was commission. Because of this sometimes I didn't spend as much time with my children as I wanted to. I was always on the go. When I went to Alberta with my future (second) husband, we opened up a music store which became the biggest of its kind in central Alberta. Mind you at this time, I still had a real estate company in Vancouver which I came to six times a year to handle things. I loved dealing with figures and loved the idea that I didn't have to hustle all the time. Customers came to us because we gave them excellent service. Our prices were reasonable and soon we had customers traveling for miles to shop at our store. I loved the job but it wasn't my dream, so when the marriage broke down I left. I went back into real estate when I returned to British Columbia but my heart was not into it. I slowly moved more into property management but soon created my own company doing mini vacations while working with merchants at a local resort. I really enjoyed what I was doing. My diabetes went out of control, mainly over the stress of the relationship I was in at the time. So because of my health I was unable to work and then moved down to Vancouver to be closer to my family. I lived on my savings for about a year but I could not work. I was so close to being hospitalized so many times. It was really hard. But once I started feeling better, I was wondering if anyone would hire me. Here I am 50 years-old and I decided I don't want to go back into real estate. I wanted to do something different. So I did up my resume and went out and hit the road and within three days I had a job [the group cheers] Hurray, someone had faith in me. After 6 months, I had another job offer that I decided to take and did that job for two years. I loved it and felt like I was getting paid to be on a vacation. I decided to create a discount/loyalty program that became very successful and spent hours designing a booklet and had it printed to be put in every unit of the resort. The program 105 was expanded to several other resorts. All my hard work paid off and I was given a promotion. I was asked what I wanted out my career with my employers and I said I wanted to manage one of our resorts. He then asked me to become his administrative assistant going in to that route by the back door. Another goal would be met for me. Then all hell broke loose when I had my Ml. Because the job was just given to me, I felt I could not take any time off. Everything was at a stand still waiting for my return to work. I returned to work and found I tired very easily. I knew that I had to keep going and with patience I would get better. I also knew that once I was stronger I had to start exercising as it is very important to help to heal my heart and make it strong again. My heart attack has left my fellow associates with the feeling that I am not physically strong and that I probably should stay in the position I am in now. That really pisses me off (voice lowers). It's true at this point in time but it really bothers me. But I also feel that I probably would not be as good as a resort manager at this time because it is a very hard job. I'm impatient with my health and angry that it has made me step back to reevaluate goals. I also feel that I won't be able to retire as I need the good health insurance to cover my prescriptions. Not only did I have a heart attack but I'm a diabetic and I'm on the pump and all of this cost thousands of dollars. So I'm very expensive. I'm not an easy keeper any more (laughs). I am going through a bit of a transition to become more logical on what I would like to see in my future. Of all the illnesses that I have had to deal with, this heart attack has really hit me the hardest. One of the reasons is probably my age as it is not as easy to bounce back as you do when you are younger. The other is that it came so unexpectedly. No warning. It is truly scary to think that you could die that easily, and there is nothing you can do about it. Nothing you can do to make it not happen again. Because of my diabetes, my heart was damaged. The very small arteries were plugged and could not be fixed. They are still plugged. It has made me feel weak and vulnerable. To sum up, I feel very fortunate that I was given this job prior to the attack, because I probably would not have been offered it after. It is a better job than my previous job, only because it does not put pressure on me and allows me not to over do it. But can you imagine what I could have done with good health? Helen: Yeah (nodding). Wow! Facilitator: How was that to read for you? Arlene: It was hard to get around this because it really bothers me. I have been on my own as you have for a lot of years (looks at Helen) and we don't have somebody we can get help from 106 physically, emotionally or financially. So if I'm unable to work I'm sure I can go on disability but I have bills to pay and I am very committed to pay my bills. Helen: But it's also interesting your projection for your future in terms of the medications you will need for the rest of your life and if you have a good plan that will cover that because that's huge. Arlene: It's really really important. Facilitator: So a shift in priorities in a way and the way you are thinking. You were very loud and clear "I'm pissed off this is happening and I don't want to slow down" but I also heard you actually planning how to do that. Researcher: I kind of hear one foot in one foot out. Sort of you saying " I have gratitude for having this job because I need to be different." Arlene: I need a pay cheque. I'm really glad I have it. Researcher: But I mean in terms of your health. You said before if you were doing that other job there is no way you could have kept up. Arlene: I wouldn't have been able to give it the attention and I wouldn't have been as good at it as I am now. You know the person that replaced me is doing not even a fifth of what I was doing. Researcher: Right, so I suspect that you would do any of your jobs in a passionate and creative manner because that is who you are. Again, that passion in whatever you choose to take on. Helen: So is there a chance you will get to run one of these resorts maybe next year or as your confidence grows? I t hasn't been that long since you had the heart attack but maybe in a year it may look like you are pretty stable and reliable and your health is reliable and that you might be able to do what you wanted with the one of the resorts. Arlene: Well I've got to do something because I don't get paid enough (laughs) and I need more money because I've only got so many more years to live and work before I have to retire. And I won't be able to successfully retire. Why am I even worried about retirement I don't have enough money saved anyways? So I'll end up going on welfare and I don't want to do that. So why am I worried about it? (laughs). Why am I worried, I can't do everything? You work all your life for retirement and then you need to get a divorce and you lose everything and you have to start all over again. And then you get sick which makes it hard to start over again. Researcher: All these obstacles. Arlene: Yeah and then not only that. Now it's the medications. It costs me so much money for medications in order for me to survive. It would take my whole pay check once I retire with what they give you because I was self employed for so many years I don't have a big pension plan because all the money I had invested is gone because the stock market took most of it. 107 Helen: So do you have a plan now where you are reimbursed for your medications? Arlene: They pay for it. Bev: You certainly are really powerful. You've had so much to contend with but you've always managed to find a way to achieve whatever goal you set out for yourself. I have no doubt that you will do okay in the future too. I really think you have a lot of strength and I think even though your body has let you down you will still do whatever you need to do to get along. Sarah: I think you shouldn't be worried. You have a home and you have a good job. I think we lose the moment because we focus on the future. You cannot do anything about the future. Arlene: You can have goals for your future. Sarah: Yes but having goals is different than worry (group nods). Sometimes I'm really worried because I can't see my future. When I was young I didn't have any worry about my future. Now I have heart disease. And I have nothing here. My money is blocked. In my country they say if she wants her money she has to come back here. I'm worried about my sister. They are really suffering there. You have your freedom. You can talk. You can make decisions for yourself. Arlene: You know something, with all the illnesses I've had in my life I learned a long time ago, when I wake up in the morning it's the best day of my life. I live it to the fullest and I live my life to the fullest everyday...everyday. Sarah. Sarah stated that she had difficulty writing about her life work given that she currently does not have a job. She briefly spoke about her experience of living and working in her former country and the differences of being in Canada. I wanted to take a course that would allow me to help children. I didn't want to stay here; I wanted to go to a country where they need people to help. I already had experience [working with children]. In any event, they told me that I should take accounting because I have lots of experience. And sometimes I would like to have my job which I had before. And sometimes I just want a small house in a small village beside the forest and the beach and do nothing but cooking, baking and cleaning home (laughs). I told you the first time I had to clean my home I was crying and complaining to God 'what happened to me that I have to clean' (group laughs). I really used to have a life of luxury. Now I understand it is not a big deal. Facilitator: I t is all part of the process related to how you cope with big change in your life. How do you do this? Sarah: I am always telling myself 'you are not scared here.' When I first came here I saw the police and I was scared. But now I feel safe. I like them. In my country, people are worried to 108 have a connection or talk to or get close to them. They [would] escape there but not in this country. Helen: Is your country Iran? Sarah: Yes. It wasn't like that before the revolution, my country was better than here. It was really good. I loved that country. But after the revolution it changed. Helen: When was the revolution? Sarah: Twenty-three years ago. But if you go to my country you'd think it happened last week. The government doesn't let people get over the revolution. They keep it alive. Researcher: So in terms of you being here, it sounds like you are reorienting yourself to life as it is Canada and realizing that for instance the police are safe rather than dangerous. Sarah: Yes. Many things I wasn't familiar with here but I felt unsafe with when I was in my country. For example, I was fighting with government. We always had to do something to fight back. Facilitator: So I'm also hearing it's like realizing different goals that are possible. Like for you it could be about feeling safe and what that's worth to you because that is what I'm hearing in everybody's story. Sarah: Yes absolutely. And though I'm not making money my country when I was there, I was one of the successful women. It's not easy getting such a job but I had the best job. I worked for four bosses. And now all of them are my best friends. They send me a birthday gift every year. They have stayed in touch with me. They have said whenever you come back here your job is safe with the highest salary. Helen: Why don't you go back there? Sarah: Because I can't. I don't know. If they catch me... if they know... Arlene: There has to be another change in her country before she is safe to go back. Sarah: I can go back if I marry here and then they cannot prove anything. But if they caught me or my doctor they would kill me...because abortion especially for women who are not married is adultery. Helen: They would kill you if you went back? Sarah: And my boyfriend and nobody could socialize with my family. They would be isolated by society. It wouldn't only be myself. And I know if they caught me I cannot stay quiet. For sure I would talk because it's not easy. They beat you. They torture you. They don't believe you because it's not like here. Helen: They would kill you because you had the abortions? Sarah: Because I've had sex without marriage and I've had abortions. 109 Helen: Oh because of that. Sally. My life's work was altered before my Ml due to arthritis. Now it's something I do on the side. My life was more impacted by the arthritis which became so severe everything was difficult. My family helped and so did my roommate. By the way, I was a hairdresser for 30 years. That is what I wanted to do since I was about 5 years-old. I loved going to work. I still enjoy doing hair. The arthritis seems to be under control. I don't have as many flare ups as before. The first time my heart hurt it was the arthritis or pericarditis. The doctors say that's why after the Ml I still feel sore. But one day at a time. Sometimes, I'm fit as a fiddle and sometimes I cannot move, but I try to stay positive. I have great support from my family. Given that Sally did not read her narrative in the group, I have included the following observations. In reading Sally's narrative, I was aware of the continued brevity of her writing and the absence of emotional expression. I was left wondering about the potential impact of having lost her livelihood as a result of deteriorating health and whether she had any thoughts or feelings about future plans related to her life work. I initially viewed Sally's narratives as being resistant in terms of completing the task of reflection and writing introspectively about her life experiences. I now wonder whether these fragmented stories reflect her coping style as she compartmentalizes and concretizes aspects of her world as a method of containment. Group Check-out Following the reading of participant's narratives, women were encouraged to comment on their experience of the session. Two women spoke of the value derived from participating in the sessions, while others acknowledged the strength of character evident in all of the participants. Arlene: I find it very healthy to go through these themes and really think about what we are writing down or what we are doing or what we are talking about. I know it is (healthy) for me because I don't sit back and reflect on anything. I go forward and I don't look back. It's something that is lacking in my life. Facilitator: Thank-you for keep coming because you have said that all along and you keep coming. Good for you (Arlene laughs). Facilitator: Anything you are going away with tonight Sarah. Sarah: A good time and good conversation and I'm talking...especially with my English. 110 Earlier, Sarah acknowledged that it was "getting easier" for her to talk since the first research session. "After [Sally] heard me talk about the sea bus, she told me 'we should go together on the sea bus.' I felt that I had somebody. That was nice and I will never forget that." Unfortunately, in her absence, Sally did not hear the impact that her support had on Sarah which she perceived as being restorative. Helen: There are strong people here. Bev: That's what I've noticed. Very powerful women and we've all shared the experience of a heart attack and although there are variances in that we all have that common experience. I t 's interesting to see how we're dealing with that. Helen: I t seems that each one of us has our own passion about our lives. Yours is your family (looks at Bev); yours has been your work and your health (looks at Arlene); mine has been my work; and yours has been your whole life (looks at Sarah) [The group laughs]. Facilitator: What I'm really hearing tonight is T want to live my life to the fullest and in that how do I work with this.' Like having to reorient or rethink in the face of that. Helen: None of us are weak characters; like there isn't one of us that is wishy washy or a weak character. Each one is very strong and forthright in what their beliefs and values are. Before closing, the facilitators also suggested rescheduling the research meetings to accommodate for the holidays. While the participants appeared to favor this plan we encouraged the group to revisit this decision the following week when all of the group members were present. Researcher's Process In general, I felt encouraged that the group was becoming more cohesive and comfortable with the research process. As well, it was clear from women's feedback that they were valuing the experience of participating in the group and finding it helpful in terms of better understanding or clarifying different aspects of their experiences including their illness and recovery from Ml. At the same time, I felt concerned about the two participants who had not attended this session. While Margaret had notified me that she would not be attending the session due to illness, I had the sense that she was not being fully candid regarding her continued participation in the group. I also felt uneasy that Sally had missed the session without contacting the facilitator or myself. When a cardiac patient fails to show up for an appointment there is always some concern that that person is not well. In Sally's case, I also recalled her expressed discontent with the group process the previous week. My counsellor intuition wondered if her 111 absence and lack of contact was an act of noncompliance; synonymous to an angry client that arrives late or misses her session. As a researcher, I felt concerned that the absence of two participants would impact the quality of my data collection. In this case, my concerns surrounding the commitment and compatibility of participants with the research method speaks to the importance of potentially creating a more sophisticated participant screening procedure for future GA groups. Debriefing sessions with both the facilitator and research advisor were enormously helpful in terms of addressing these current issues. Given that I had screened women for the group and conducted the initial interviews, participants tended to defer to me around issues of organization and authority. In order to balance this power differential (and encourage participants to be accountable to the facilitator as well as myself), the facilitator and I decided that she would contact the absent participants to discuss their participation status in the project. I agreed to deliver the next GA theme to Sally and retrieve her missed narrative. During this visit, she reiterated her concerns about discussing personal material and her tendency for shyness but still agreed to continue attending the research sessions. I reiterated the GA writing and group guidelines around setting boundaries around disclosure based on personal limits. As well, I explored the power dynamics that appeared to have transpired with Sally and Margaret over the past couple of weeks. I was able to tease apart my concerns around not wanting to offend or ultimately lose participants if I were to directly name their reluctant behavior and how this was interfering with addressing these concerns in a straightforward manner. This dynamic is analogous to a common counselling scen