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The experience of waiting for coronary artery bypass graft surgery Dubyts, Deanna Christine 1988

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THE EXPERIENCE OF WAITING FOR CORONARY ARTERY BYPASS GRAFT SURGERY by DEANNA CHRISTINE DUBYTS B.S.N., The University of Saskatchewan, 1981 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING In THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA April 1988 © Deanna Christine Dubyts, 1988 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 DE-6f 3/81) ii AB5TRACT THE EXPERIENCE OF WAITING FOR CORONARY ARTERY BYPASS GRAFT SURGERY The purpose of this study W8S to explore and describe the experience of waiting for coronary artery bypass graft (CABG) surgery from the perspective of the individual who h8s a prolonged wait for this surgery. A phenomenological approach was used to guide the study. Data were collected through 17 semi-structured, audio-taped interviews with 7 men and 2 women awaiting CABG surgery. Analysis occurred concurrently with data collection. It was found that there were three interrelated core facets of the experience: the illness, the prospective surgery, and the wait. Each facet held distinct meaning: the illness represented a loss of normalcy and a threat to life; the surgery, both an opportunity to regain normalcy and a threat; and the wait, a "no control" situation which enhanced the losses and threats of the other facets, engendered further losses, and delayed the expected gain from surgery. Within each facet, representative emotional reactions, and coping strategies were identified. The findings indicate that these clients require regular contact and that nursing care must address all three facets of the experience. iii Table of Contents Abstract 11 Table of Contents 111 Acknowledgements vi CHAPTER ONE: INTRODUCTION 1 Background to the Problem 1 Conceptual Framework 6 Problem Statement 8 Purpose of the Study 9 Definition of Terms 9 Assumptions 10 Limitations 10 Organization of the Thesis 10 Chapter Summary 11 CHAPTER TWO: LITERATURE REVIEW 12 Surgery: A Stressful Prospect 12 Perceptions of Surgery 13 Preoperative Psychosocial Variables as I ndicators of Outcome — 15 Preoperative Preparation 19 Waiting for CABG Surgery 24 Concerns While Waiting 29 Coping Strategies While Waiting 30 Chapter Summary 33 CHAPTER THREE: METHODOLOGY 35 Overview of Methodological Approach 35 The Phenomenological Approach 36 Congruence of Phenomenology and the Lazarus Stress and Coping Framework 37 Selection of Participants 37 Criteria for Selection 38 Selection Procedure 38 Data Collection 41 Data Analysis 4 4 Ethical Considerations 4 6 Chapter Summary 4 ? iv CHAPTER FOUR: FINDINGS 48 Characteristics of the Participants 48 Accounts of Waiting for CABG Surgery 50 The Illness Facet 52 Meaning of the Illness 52 Loss of Normalcy 52 Threat of Loss 58 Gain 59 Psychological/Emotional Reactions 60 Anger/Frustration 60 Fear/Anxiety 61 Vulnerability 61 Coping with the Illness 62 Taking Action 62 Seeking Information 69 Making Sense of the Illness 71 Thinking Positively 74 The Surgery Facet 75 Meaning of the Surgery 75 Threat of Loss 76 Opportunity for Gain 78 Psychological/ Emotional Reactions 82 Fear/Anxiety 83 Ambivalence 84 Coping with the Prospect of Surgery 86 Seeking Information 86 Preparing for Surgery 92 Thinking Positively 95 The Wait Facet 102 Beginning the Wait 102 Meaning of the Walt 103 Loss 103 Threat of Loss 109 Gain 110 Psychological/Emotional Reactions 111 Helplessness I l l Feelings of Depression 113 Anger/Frustration 113 Fear/Anxiety 115 Boredom 118 Coping with the Wait 119 Considering Alternatives 119 Contacting the Power Source 120 Maintaining a Positive Attitude 121 Making Sense of the Wait 126 Ending the Wait 129 Chapter Summary 131 CHAPTER FIVE: DISCUSSION OF THE FINDINGS 134 The Illness Facet 134 Meaning of the Illness 134 Psychological/Emotional Reactions 139 Coping with the Illness HI The Surgery Facet 148 Meaning of the Surgery 148 Psychological/Emotional Reactions 151 Coping with the Prospect of Surgery 154 The Wait Facet 162 Meaning of the Wait 162 Psychological/Emotional Reactions 166 Coping with the Wait 171 The Central Theme of Uncertainty 175 Chapter Summary 178 CHAPTER SIX: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING 180 Summary 180 Conclusions 184 Implications for Nursing Practice 185 Implications for Nursing Education 190 Implications for Nursing Research 192 Concluding Remarks 195 REFERENCES 196 APPENDICES 207 Appendix A Letter of Information to Prospective Participants 207 Appendix B Participant Consent Form 208 Appendix C Initial Interview Guide 209 vi Acknowledgements I wish to express my deepest gratitude to the women and men who generously and candidly shared their "waiting" experiences with me. What I have learned from them is incalculable. I am also indebted to the cardiothoracic surgeons who supported this endeavour. My sincere appreciation is extended to Carol Jillings, Sally Thorne, and Joanne Cozac for their guidance in the research process, scholarly critique, and expressions of confidence and encouragement. I am especially grateful for the time and effort they freely gave this project during the final weeks of its writing. A special thank you is extended to Joanne for her unwavering enthusiasm for this study from the time of its conception. Finally, I am much indebted to my dear family and friends for their precious gifts of caring and support during this challenging time. Their gifts have been a source of sustenance. 1 CHAPTER ONE INTRODUCTION Waiting has been depicted as an important occupation for patients (Hein, 1980). Health care workers and patients alike recognize that this occupation inevitably will be assumed by most patients having contact with health care agencies. However, in these times of increasing demand on a health care system with limited resources, a growing group of waiting patients can also be found in the home setting of the community. These are individuals who wait in anticipation of the event of health care. For many of them the anticipated event is that of surgery. Individuals awaiting open heart surgery in the form of coronary artery bypass grafting are often placed in this situation. The opportunity and need for research provided by their situation generated the impetus for this investigation. This study thus became a quest for understanding the experience of waiting for coronary artery bypass graft surgery. Background to the Problem "Cardiovascular disease hss been described as the worst epidemic ever to strike Canadians" (Nicholls, Nair, MacWilliam, Moen, & Mao, 1986, p. 3). In response to the toll the disease has taken on the lives of Canadians and the Canadian health care system, major efforts have been undertaken to counteract i t Despite major strides, ischemic heart disease, the major form of cardiovascular disease, independently ranks as the leading cause of mortality (Statistics Canada, 1987a) and hospital morbidity in Canada (Statistics Canada, 1986). Each year, a significant number of Canadians diagnosed with ischemic heart disease undergo coronary artery bypass graft (CABG) surgery to restore circulation to the myocardium. In the year from 1982-1983, the last period for which national statistics are available, over 13,000 such operations were performed (Statistics Canada, 1987b). This figure represents more than a 2 tenfold Increase since 1972 (Statistics Canada, 1975). Similar trends are seen In the province of British Columbia where, in 1986-1987, about 1300 CABG operations were performed, 200 more than five years ago (Statistics British Columbia, 1987). Concurrent with the proliferation of this surgery have been improvements in technology, surgical technique, and management. Overall average risks for operative mortality have subsequently declined and currently are estimated to be between 1 and 3 % (Lytle & Loop, 1985; Rahimtoola, 1982). CABG surgery has thus come to be recognized as a sophisticated, common, and relatively low risk therapeutic modality. , Statistics, however, are not necessarily accurate predictors of human perception. Although CABG surgery has a high success rate, there remains associated with it a disproportionate perception of threat (Pieper, Lepczyk, & Caldwell, 1985). Undoubtedly, this arises largely from an historical tendency to endow the heart with special mystique and sentiment (Blacher, 1987; McCauley, 1985). No other body organ Is as central to the notion of life and death (Blacher, 1987). Awareness that one's heart will be stopped and later restarted during an open heart operation may evoke images of death for the surgical candidate (Blacher, 1987). Consequently, the psychological and emotional impact of heart surgery makes it decidedly unlike other forms of surgery. Typically, It Is subjectively regarded as a life-threatening situation with an uncertain outcome (Cohen, 1982). A growing body of nursing literature supports the view that cardiac surgery is an unusually stressful experience for the individual (Carr & Powers, 1986; Gilliss, 1984; Haselhorst, 1971; Kennedy, 1966; Pieper, Lepczyk, & Caldwell, 1985;Rakoczy, 1977). Research has identified the waiting period before CABG surgery as a particularly stressful phase of the total open heart surgery experience (Gilliss, 1984; Radley & Green, 1986). Complicating this situation is the reality that a prolonged, indeterminate period of waiting in the 3 home will be Inevitable for a majority of Individuals requiring this surgery. Many weeks, and often months, frequently elapse between the decision to have surgery and its actual occurrence (Cozac, 1987). In November of 1987, this situation reached critical proportions in British Columbia when it was publicized that about 450 people were awaiting heart surgery in the province (Fitterman, 1987). Although statistics were lacking, the common observation of health care professionals was that waiting periods were longer than ever before. During this critical time of waiting, individuals face the thought of surgery while also fearing they might have a heart attack, possibly a fatal one, before the time of surgery (Penckofer & Holm, 1984). The commonly used phrase "walking time bomb" (Borders, 1985) dramatically portrays this precarious situation of the waiting Individual. The fear of becoming a mortality statistic is enhanced by media reports which draw attention to the number of people who have died on the open heart surgery waiting list (e.g. Mullens, 1988). Waiting for surgery thus entails the dally management of a life-threatening illness as well as the anticipation of a life-threatening event (Cozac, 1985). Given these considerations, it is surprising that the prolonged period of waiting in the home before CABG surgery remains virtually uninvestigated. Although researchers have shown a growing interest in the psychological Implications of open heart surgery, the focus has been primarily on the postoperative period. Studies have identified and addressed the problem of posteardiotomy delirium (Budd&Brown, 1974; Chatham, 1978; Sadler, 1979, 1981) as well as documented behavioural and emotional reactions of the hospital recovery period (Jillings, 1978). Long-term difficulties with psychosocial adjustment have been reported (Gundle, Reeves, Tate, Raft, & McLaurln, 1980; Kornfeld, Heller, Frank, Wilson, & Malm, 1982; Ramshaw & Stanley, 1981). The recent research emphasis on long-term recovery following CABG surgery has created an awareness of the need to consider the perceptions of the individuals 4 themselves when measuring quality of life parameters (Cohen, 1982; Flynn & Frantz, 1987; LaMendola& Pellegrini, 1979; Penckofer& Holm, 1984). Thus, the importance of psychosocial factors and subjective perception in the experience of CABG surgery has come to be widely appreciated. Health care providers have noted the significant role of perception In forming the individual's psychological response to upcoming surgery. Indeed, it has been proposed that the emotional, psychological, and behavioural responses of the preoperative period before open heart surgery have significance for shaping not only the immediate, but also the extended, postoperative recovery course. For example, research has suggested that individuals who manifest high anxiety or depression in the immediate preoperative period before open heart surgery are less able to cope resourcefully with postoperative recovery (Heller, Frank, Kornfeld, Malm, & Bowman, 1974). The implication of such research is that there may be benefits to intervention by health professionals early in the preoperative period. Yet until the home waiting time comes to be regarded as a significant part of the preoperative period which influences the phases that follow, and sustained efforts are made to investigate that waiting time, how are professionals to know the most effective means of proceeding with early intervention? The intervention which has received the most attention in preoperative studies 1s that of preoperative teaching. Considering that information seeking has been shown to be a universal coping behaviour used by individuals scheduled for CABG surgery (King, 1985), a focus on this intervention is warranted. However, in the experience of this researcher, formal preparation for CABG surgery typically commences upon entry to hospital. Research which addresses the problem of determining what information is needed and when it is needed during the total presurgery phase is almost nonexistent. Even more puzzling is the rare acknowledgement in the literature that these waiting individuals have informational needs or that there may be benefits to 5 providing preoperative Information prior to hospital admission for surgery (Chrlstopherson & Pfeiffer, 1980; Coombs, 1987). Much remains to be discovered about the role of information within the context of a prolonged waiting period before CABG surgery. This researcher's review of the literature revealed that studies which investigate the home waiting period during the period before hospitalization for surgery are the exception rather than the norm. As will become more apparent in the succeeding chapter, the little that is known about the preoperative period of CABG surgery has customarily been drawn from investigations during the few days of hospitalization immediately preceding surgery. However, to fully understand the individual's experience of waiting for "elective" heart surgery, research needs to address the home waiting period as well as the hospitalized period. Furthermore, the most vivid and accurate portrayal of this experience may best be captured while it is experienced rather than through retrospective account. Interestingly, the dearth of research on the waiting period before CABG surgery parallels a lack of investigation on the broader phenomenon of waiting. Yet waiting has been explicitly identified by practising nurses as a phenomenon essential to nursing (Paterson, 1978). Inasmuch as waiting is universally experienced by individuals having contact with the health care system, it Is an enigma that It has been the express subject of so little nursing investigation (Edwards, 1987; Pieper, Lepczyk, & Caldwell, 1985; Rakoczy, 1977; Thorne, 1985; Weems, Taylor, & Davidson, 1983). The tendency of researchers to overlook those who wait perhaps reflects a general tendency of health care professionals to devote less attention to waiting individuals. From this researcher's years of hospital nursing experience with individuals having CABG surgery and recent case studies during the home waiting period, it has become apparent that contact with the health care system prior to hospital admission for surgery is usually limited to infrequent, short visits with busy physicians and surgeons. The time between the decision to 6 have CABG surgery and entrance to hospital is often described as a time of isolation from health care service in which doubts, worries, and questions are rampant. It has been said that" anticipating the event of health care seems worse than the reality of it" (Hein, 1980, p. 175). Considering that individuals awaiting CABG surgery are confronted not only with anticipation of surgery but also with the everyday tasks of Illness, It seems to be a foregone conclusion that the home waiting time assumes major significance for them. However, what this experience entails from the perspective of those involved remains, as yet, unknown. This research is essential if nurses and other health care professionals are to provide quality health care based on systematic Investigation of these individuals' experience. Conceptual Framework The viewpoint that perception plays a crucial role in shaping an individual's response to matters of health and illness currently receives popular support in the health literature. One theoretical perspective that has consistently emphasized this primary role of perception is the cognitive-phenomenological theory of stress and coping developed by Lazarus and his colleagues (Folkman & Lazarus, 1985; Lazarus, 1966,1981; Lazarus & Folkman, 1984a, 1984b; Lazarus & Launier, 1978). According to this theory, cognitive factors are central in determining the impact of stressful events, the selection of coping patterns, and the emotional, physiological, and behavioural reactions. Because waiting for CABG surgery is typically regarded as a stressful experience incorporating the dual threats of illness and imminent open heart surgery, the Lazarus stress theory was seen to have considerable utility for the study of individuals who await CABG surgery. A review of the major tenets of the theory will elaborate on this. Within the Lazarus framework stress is defined as "a relationship between the person and the environment that is appraised by the person as relevant to his or her well-being and in which the person's resources are taxed or exceeded" (Folkman & Lazarus, 1985, p. 152). The 7 framework is transactional and process-oriented in that the individual and the environment (the external situation) continually influence each other in a dynamic, bidirectional relationship. Therefore, when studying stress from this theoretical viewpoint, it is necessary to analyze both the person and the environment acting over time together (Lazarus & Folkman, 1984b). Lazarus (1966) postulates that two processes, cognitive appraisal and coping, mediate between the person and environment in any stressful encounter. Through the process of cognitive appraisal a person evaluates whether a situation is, or could be, damaging on the basis of his or her understanding of its ability to inflict harm and the available resources to deal with the perceived harm. There are two forms of appraisal: primary appraisal, through which the significance of an event for one's well-being is evaluated ("Is there anything at stake here?") and secondary appraisal, through which coping resources and options are evaluated ("What can I do?"). Stressful appraisals are of three types: harm/loss, referring to damage already done; threat, referring to a potential for harm or loss; and challenge, referring to an anticipated opportunity for growth, mastery, or gain. Primary and secondary appraisal processes function interdependent^ with initial appraisals being followed by reappraisals. These appraisals shape the meaning of every stressful encounter (Lazarus & Folkman, 1984b). Coping Is conceptualized In this framework as "cognitive and behavioral efforts to manage (master, reduce, or tolerate) a troubled person-environment" (Folkman & Lazarus, 1985, p. 152). Coping efforts, which can be anticipatory or reactive, function in two ways: to manage or alter the problem that is causing the distress (problem-focused coping) and to regulate the accompanying stressful emotions (emotion-focused coping). What a person actually thinks and does in relation to a specific encounter as it unfolds over time is referred to as a coping process. Throughout an encounter the coping and appraisal processes continually influence each other. 8 Emotions, which have major significance in this theoretical formulation, are defined as "products of how people construe (appraise) their ongoing transactions with the environment" (Folkman & Lazarus, 1985, p. 152). The intensity and quality of emotions thus convey information about how individuals think they are coping with what is significant to them in a given encounter. Being mediated by appraisal, emotional reactions change over time In response to changing appraisals of the significance of what is happening. Lazarus maintains that individuals should be researched in their natural environments, that is, in their own real-life situations. He also emphasizes the importance of ipsative research which focuses on intraindividual observation and comparison over time. To study coping, it is suggested that the researcher obtain self-report data in which individuals describe their thoughts, feelings, and acts (Lazarus and Folkman, 1984b). Central to these beliefs is the position that individuals appraise an event in terms of their own life experiences and react to that event In different ways depending on the meaning it has for them. When these ideas were applied to this study, direction was provided to determine what significance or meaning waiting for CABG surgery has for the individual and to elicit descriptions of thoughts, feelings, and actions that reveal information about reactions and coping processes related to this event. Problem Statement Given the large numbers of Canadians undergoing the procedure of CABG surgery, the apparent trend for many of these individuals to face increasingly prolonged preoperative periods, and the belief that the preoperative experience is critical in shaping the total surgical experience, the time of waiting before CABG surgery presents as a growing concern for health professionals. Yet existing literature reports only scant research upon which to base the delivery of health care to these individuals. Considering the little that was known about the time of waiting before CABG surgery and the recommendation of the Lazarus stress and coping theory 9 that subjective reports be used to research a stressful encounter, the most logical fxus for this study was to describe the lived experience of waiting from the subjective viewpoints of the individuals themselves, if health care providers and nurses, in particular, are to supply the needed support and care to these individuals, they need to understand and appreciate the meaning of the experience of waiting from the perspective of the Involved Individuals. Therefore, this study sought to answer the question: What is the experience of waiting for coronary artery bypass graft surgery? Purpose of the Study The purpose of this study was to explore and describe the experience of waiting for coronary artery bypass graft surgery from the perspective of the involved individuals. This information was sought for the purpose of enhancing nursing's knowledge base about the phenomenon of waiting as it pertains to the situation of anticipating CABG surgery. Furthermore, it was anticipated that It would help nurses to better understand the needs of these individuals in order that effective care can be provided to them. Definition of Terms The following terms are defined to make explicit their use in this study: Experience - the thoughts, feelings, and actions which describe how an Individual who Is scheduled to have CABO surgery Interprets, reacts to, and copes with the situation of waiting for CABO surgery Waiting - an act of temporal expectation in which an event is anticipated within the boundary of a known or unknown timeframe (adapted from Hein, 1980) Coronary artery bypass graft surgery (CABG surgery) - heart surgery which creates new pathways) for oxygen-rich blood to bypass blockages or major narrowings in the coronary arteries (American Heart Association, 1976) 10 Assumptions Underlying the researcher's approach to this study were several assumptions. It was assumed that the situation of waiting for CABG surgery has meaning for the adult individual such that it is appraised as being "stressful" as delineated by the Lazarus framework. It was also assumed that waiting for CABG surgery has a significant impact on an individual's life In that it gives rise to identifiable reactions and requires the individual to cope with the situation in some way. Furthermore, it was assumed that individuals waiting for CABG surgery would be willing and able to share descriptions of their experiences in an accurate and honest manner. Limitations In this study participants were drawn from the cardiac surgery waiting list of a single agency and were restricted to individuals residing in the metropolitan area of one city. The sample was, therefore, a specialized sub-group of individuals waiting for CABG surgery. Additionally, due to time constraints of the researcher, it was impossible to continue interviewing each participant up to the time of admission to hospital. Therefore, less data were obtained about the experience during the latter weeks of waiting when a date for hospitalization had been confirmed and the prospect of surgery, consequently, was much more imminent. These factors posed limitations to the generalizability of the study's findings. Organization of the Thesis The subsequent chapters of this thesis describe the process undertaken to research this study's question and the results thereby obtained. Literature pertinent to the identified research problem is reviewed in Chapter Two. Chapter Three then explains the methodology used to guide the study. The study's findings, presented as accounts of the participants, comprise Chapter Four. Chapter Five follows with a discussion of the findings in light of relevant literature. The sixth and concluding chapter presents a summary of the study and implications of its findings in 11 relation to nursing practice, education, and research. Chapter Summary This chapter has presented introductory material for this study which sought to answer the question, "What is the experience of waiting for coronary artery bypass graft surgery?" Background information was provided which established the timeliness of such a study, the stressful nature of the presurglcal period, and the sparse research about the waiting period prior to hospitalization for CABO surgery. The Lazarus theory of stress and coping that provided a conceptual framework to guide the study was explained. Additionally, terms central to the research question were defined and assumptions and limitations of the study were noted. The next chapter reviews literature pertinent to the identified research problem. 12 CHAPTER TWO LITERATURE REVIEW The purpose of this chapter is to present an exploration and analysis of literature relevant to the experience of waiting for coronary artery bypass graft surgery. Considerable disagreement exists about the extent to which literature should be reviewed and used to guide research which seeks to understand and describe phenomena pertaining to everdsy experience, as does this study. In conducting a literature review, this researcher has followed the recommendations of Field and Morse (1985) who advocate that literature should be selectively examined end used in a manner that enables the researcher to be informed, yet open, such that analysis of data is not bound by analyses previously reported in the literature. Because research specifically addressing the identified problem under investigation was found to be limited, literature pertaining to the broader experience of being a preoperative patient was also examined. Thus, the literature review is presented in two major sections. The first of these discusses general literature pertaining to the preoperative phase of surgery noting, in particular, the stressful nature of this time period for the patient. Special effort is made to examine literature relevant to the preoperative phase of open heart surgery. The second section more specifically addresses the phenomenon of waiting for CABG surgery, with particular emphasis on the experience of prolonged waiting. Surgery: A Stressful Prospect It has long been acknowledged in the health literature that the prospect of surgery is stressful. Heightened awareness of the significance of the presurgery experience is attributed largely to a classic study of preoperative psychological stress by Janis (1958). From his extensive study arose the proposition that surgical candidates commenced the "work of worrying" 13 as soon as they realized they faced a situation of genuine threat. Janis is known for his theory that moderate anticipatory fear serves a valuable function in preparing for and responding to the event of surgery. The nursing literature of the 1960s and early 1970s typically reflected this growing appreciation for the preoperative period. For example, Carnevali observed in 1966 that "the preoperative period is normally a stressful, anxiety-ridden time In a patient's life when the activities of the nurse may be particularly important" (Carnevali, 1966, p. 1536). Perceptions of Surrjerv Why is it that surgery is perceived to be so stressful? According to Janis (1958), major surgery represented three forms of imminent danger — the possibility of suffering acute pain, of undergoing serious body damage, and of dying. Research with general surgery patients has both confirmed and extended Janis' statement. Cassady and Altrocchi (1960) conducted interviews with 40 patients to elicit their concerns about surgery. They found that the expressed concerns, in decreasing order of their frequency, included: death, diagnosis, discomfort, helplessness, socioeconomic factors, disability, and the unknown. Carnevali (1966), in her summary of three studies, reported that pain and discomfort, followed by the unknown, were the most frequently mentioned fears. Other concerns that were identified included: destruction of body image, separation from normal environment, previous experience, death, disruption of life plans, loss of control, and finances. Similar fears were reported by 70 presurgical patients in a study by Graham and Conley (1971). Although the above studies were dated, they did provide a substantial and still valid body of research that demonstrated the threatening nature of surgery from the patient's perspective. General surgery was perceived to be a threat to one's biological and psychosocial being. If this is how general surgery is perceived, how then is surgery performed directly on the heart perceived? H Not surprisingly, a common theme found In the literature was that open heart surgery is perceived as life-threatening. Cohen (1982), for example, illustrated this when he stated that "the bypass graft recipient correctly believes himself to be in e life-threatening situation. Though the danger may be exaggerated in his own mind, he surely thinks he may die" (p. 31). This echoed 8n earlier statement by Brownsberger (1965) that heart operations carried their own special psychological stress because they were accompanied by the threat of death. Patient testimony generally supports these statements. In a panel discussion, individuals who had undergone CABO surgery testified that they feared death prior to the operation (Borders, 1985). Several commented that this fear increased markedly during the last hours before surgery. That these patients typically reported updating their wills and putting their affairs in order before surgery also indirectly substantiated their awareness of potential death (Borders, 1985). One of the best known authorities on this subject is Blacher (1971, 1972, 1978, 1983, 1987). who writes from both a research and experiential background with patients having open heart surgery. He commented that heart surgery is, for the patient, unique in several ways. "First, it is often elective and yet experienced as life endangering. Second, no other organ is so connected with the idea of life and death" (Blacher, 1987, p. 44). In Blacher's experience, a common source of anxiety was a fantasy of resurrection after surgical arrest of the heart. Many patients believed that while their hearts were stopped they actually were dead. Blacher emphasized the importance of cultural meanings of the heart in contributing to an individual's perception of heart surgery. Additionally, he provided examples that illustrated how the heart historically has been regarded 8S a special, 8we inspiring organ, "intimately associated with love, other emotions, and even intellect" (Blacher, 1987, p. 45). His major thesis was that these factors contributed to making the emotional impact of heart surgery enormously unlike that of other surgeries. 15 Cam and Powers (1986) supported the viewpoint that surgery performed on the heart was unusually stressful. They found that "having cardiac surgery" was perceived by patients to be the most severe stressor associated with the experience of CABG surgery. They attributed the finding to the fact that the surgery was performed on a vital organ. In a recent study, King (1985) Investigated the concerns of patients having CABG surgery. On the day before surgery, subjects were asked to indicate whether they had specific concerns and to rate the extent of their concern for each. Categories of concerns were preset by the researcher. It was found that most concern was voiced for future plans (765? of subjects), followed by life (4658), bodily integrity (22 5S), and then social roles (18 58). It was King's suggestion that ambiguity of outcome might account for the presence of these concerns. Considering the threatening nature of open heart surgery that is portrayed in the literature, one would logically presume that the prospect of gain must be substantial for an individual to consent to it. Often surgery is perceived to be the last resort to treating the cardiac illness (Cozac, 1985;Yamada, 1984). Individuals who underwent CABG surgery said they did so with the hope of leading a normal life again and reducing the risk of having a heart attack (Borders, 1985). Research has demonstrated that expectations for surgery generally fall into four classes: symptom relief, prevention of Illness-related complications (which often was perceived as extending life), re-engagement in specific activities, and returning to normal (Cozac, 1985; Radley & Green, 1985; Yamada, 1984). Thus, cardiac surgery is typically perceived to represent a paradoxical situation. It has been aptly described as simultaneously representing "both a blessing and a curse" (Cozac, 1985, p. 55). Preoperative Psychosocial Variables as Indicators of Outcome In psychological theory, anxiety is generally regarded to be the emotional corollary of a cognitive perception of threat (e.g. Lazarus & Folkman, 1984b; May, 1977). Health care 16 providers traditionally have been cognizant of this and consequently have devoted considerable attention to the phenomenon of preoperative anxiety. Preoccupation with this phenomenon soon led to speculation that the patient's preoperative anxiety level affected the total surgical experience. Much research activity arose from this to address the question: What is the relationship between preoperative anxiety and postoperative recovery? Janis" (1958) early research demonstrated a curvilinear relationship between preoperative anxiety and postoperative course of recovery and adjustment. He found that both high and low levels of preoperative fear were associated with behavioural and psychological disturbances after surgery. His findings, however, have never been replicated. Instead, a theory has emerged that posits an inverse linear relationship between preoperative anxiety and postoperative course of recovery. Support for this latter theory arose from research which demonstrated that low levels of presurgical anxiety were related to optimal postoperative recovery. Although different indicators have been used to measure preoperative anxiety and postoperative outcome, the supporting body of research for this theory is substantial (Cohen & Lazarus, 1973; Johnson, Dabs, & Leventhal, 1970; Reading, 1979; Sime, 1976). A few researchers, however, have failed to find a significant relationship between the patient's preoperative level of anxiety and any aspect of postoperative recovery (Bruegel, 1971; Wolfer & Davis, 1970). It is probable that these different findings can be explained by variations in measurement of anxiety and criteria used to measure postoperative adjustment and recovery (Reading, 1979; Sime, 1976). For example, some researchers focused on trait anxiety while others emphasized state anxiety. Since the beginning days of open heart surgery, the preoperative psychological status of the patient has been a matter of concern to providers of medical and nursing care. A prevalence of documented untoward preoperative reactions to surgery (e.g. Abram, 1965), a high incidence of 17 postoperative psychological reactions Including post cardlotomy delirium (e.g. Kornfeld, Zimberg, & Malm, 1965; Sadler, 1981), and long term readjustment problems (e.g. Heller, Frank, Kornfeld, Malm, & Bowman, 1974) contributed to this concern. These phenomena instigated numerous studies which examined preoperative psychological status as a predictor of surgical outcome. Interest in this area has been sustained and over time the investigation has extended to include a host of psychosocial variables in addition to anxiety as preoperative indicators of postoperative outcome. A sample of these studies will now be presented. In an early study, Kennedy and Bakst (1966) utilized case studies of 136 cardiac patients to examine the Influence of preoperative emotions on the outcome of surgery. The researchers found the highest mortality rate to be associated with a high ambivalence toward surgery. Additionally, both high anxiety and ambivalence were found to be related to a greater incidence of medical and psychological complications. Kimball (1969) also studied the preoperative psychological parameter as a potential indicator of postoperative outcome. In his study, patients were interviewed the day before open heart surgery to obtain descriptions of their expressions and handling of anxiety, previous general level of adjustment, and orientation to the future. From analysis of the self-reported data, four groups of patients were Identified ~ the adjusted, symbiotic, anxious, and depressed. Correlations were then made between the four groupings and postoperative outcome and response. A significant finding was that patients who exhibited considerable preoperative anxiety or depression had a greater chance of not surviving surgery and a greater morbidity following surgery than other patients. Similar results arose from the works of other researchers. Morgan (1971) found that prolonged depression following cardiac surgery was related to over-anxiety before surgery. Also, more deaths were found to occur among patients who beforehand expressed hopelessness 18 about the outcome of surgery. In a study of 70 patients who required valvular surgery. Heller and others (1974) found that poor psychological adjustment preoperative^ was associated with inability to cope resourcefully with postoperative recovery. Manifestations of poor preoperative psychological adjustment included: high levels of anxiety, emotional lability, low desire for surgery, depression, and high levels of psychologic activity. More recently, Bass (1984) investigated the relationship of preoperative psychosocial variables to outcome after CABO surgery. Instruments for evaluating mental state, social adjustment and functioning, and personality type were administered to 36 patients preoperatively. One-fifth of the sample weis reported to be psychiatrically disturbed before surgery. Analysis of preoperative scores in relation to outcome measurements revealed a significant association between preoperative neuroticism and adverse psychiatric outcome. Additionally, preoperative patients designated as having Type A personalities had significantly higher levels of social and psychiatric morbidity postoperatively than did non-Type A patients. Interestingly, Bass noted that patients had waited 1 to 12 months for surgery with a mean time of 5.4 months on the waiting list. However, the variable of waiting time was not considered in his analysis. Another investigation on the role of psychological factors In the outcome of CABG surgery was undertaken by Ramshaw and Stanley (1984). Information about psychological status and previous methods of coping with stress was obtained from semi-structured interviews and psychological tests conducted with 23 preoperative patients. When analyzing these factors in relation to postoperative outcome data, it was found that a history of coping well with stress and a low neuroticism scale score were the best indicators of outcome. The researchers suggested that their findings implied that patients predisposed towards poor outcome could be identified prior to surgery, particularly with reference to coping ability and personality. 19 This body of research provided strong support for the view that preoperative psychosocial variables do significantly influence postoperative outcome. However, the generalizability of the results of the early studies to the situation being addressed in this study is questionable. Those studies occurred prior to perfection of the open heart surgery technique when there were higher risks of mortality and morbidity. Surgical technique and medical management at that time were considerably different from current practices. Therefore, patients' reactions to surgery, illness, end hospitalization may have differed substantially from the reactions of current patients. Additionally, the early studies were conducted before the establishment of CABO surgery and therefore did not include patients undergoing this procedure. Moreover, In all of the aforementioned studies, data about preoperative variables were.collected exclusively during the hospitalized preoperative period. It is questionable whether the psychosocial status of the patient awaiting surgery in the hospital is representative of that during an earlier point in the waiting period. Nonetheless, the importance of understanding the preoperative psychosocial status of the patient was established by this research. An obvious implication that arises from it is s need for early therapeutic intervention during the preoperative period to enhance the benefits of CABO surgery. Preoperative Preparation The need to attend to the psychological as well as the physical well-being of the surgical patient is a long established tradition in nursing. As early as 1941, nurses were encouraged to "impress . . . [their] patients with a sense of ease and well-being and with the idea that the expected end-result... [would] be only the best one" (Lennon, 1941, p. 535). In recognizing the stressful nature of the preoperative period, Dumas (1966) recommended that preoperative nursing care should be directed toward the "prevention, mitigation or alleviation of stress" (p. 195). The provision of psychological care before surgery arose from both a desire to enable the 20 patient to attain an optimal psychological state before surgery and a belief that the provision of this care would improve the postoperative course. In later years, it was acknowledged that patients have not only a need for such preparation but also a right to it. The literature search revealed that there have been sustained research efforts in nursing to investigate the effects of psychological preparation of the patient for surgery. Although there was considerable variation between studies in the type of preparation provided, the specific surgery investigated, and the dependent measures used, an extensive body of convincing research that documented the positive effects of preoperative preparation was located. The type of preparation generally included one or more of the following: information about the situation and what was expected to happen while hospitalized, descriptions of sensations that were likely to be experienced, instructions in coping, exercises to be performed following surgery, and opportunities for expression of feelings and concerns. Dependent measures of outcome included such variables as: amount of analgesia required, length of hospital stay, frequency of postoperative vomiting, ventilatory function, and postoperative psychological well-being. The pattern of findings that has emerged from this research, although not totally confirmed, has been that informed patients who participated in preoperative preparation generally experienced reduced anxiety, fewer negative emotional responses, and faster smoother recoveries (Dumas & Leonard, 1963; Felton, Huss, Payne, & Srsic, 1976; Fortin & Kirouac, 1976; Healy, 1968; Johnson, 1978; King & Tarsitano, 1982; Lindeman, 1973;Schmitt&Wooldridge, 1973). These researchers clearly demonstrated the importance of providing preparatory care to patients during the preoperative period. A common characteristic shared by most of their studies was that the preparatory intervention was given during the hospitalized preoperative period. One notable exception to this was the study by Fortin and Kirouac (1976). They investigated the effects of a structured preoperative educational programme administered 15-20 days before 21 admission to hospital. They round that the experimental group had significantly more satisfactory recoveries from surgery than the control group, as indicated by higher physical functional capacity, fewer intramuscular medications, and greater comfort in performing activities of daily living. Even at 33 days postoperatively, the level of physical functioning in the experimental group W8S significantly better than that of the control group. The researchers demonstrated beginning evidence for the premise that formal preparation for surgery begun during the home waiting period could have potentially positive long term effects. All of the above research was conducted with general surgery patients. Only a handful of studies were found in the literature that investigated the provision of preoperative preparation to patients having cardiac surgery, the individuals of interest in this study. This was an unexpected finding considering the unusually stressful nature of heart surgery that is portrayed in the literature and the status this surgery has attained as a prevalent, sophisticated procedure. Yet, even more than 20 years ago, Kennedy (1966) observed that there was a higher priority of interest in the postoperative nursing care of these patients. She admonished nurses to be more attentive to their responsibility in preparing these patients for surgery. Most preoperative studies with cardiac surgery patients have focused on the intervention of preoperative instruction. Research has demonstrated that candidates for open heart surgery who received preoperative teaching had lower postoperative anxiety levels (Christopherson & Pfeiffer, 1980). Also, some decrease in anxiety level following a teaching session has been observed (Kinney, 1977). Other researchers have reported what preoperative information was regarded as helpful and necessary from the perspective of the the patient recovering from open heart surgery (Brambilla, 1968; Miller & Shada, 1978; Weiler, 1968). Additionally, Miller and Shada (1978) found that patients who had open heart surgery desired individualized instruction that provided details about all aspects of their conditions and treatment (Miller & 22 Shada.1978). Aiken (1972) challenged the perspective that preoperative teaching was the sole best method of preparing the patient for surgery. Instead, she evaluated the effectiveness of systematic relaxation as an intervention technique learned during the preoperative period. Patients In an experimental group received the intervention and were matched with those In a control group. Both groups received routine preoperative teaching. Although her findings were not statistically significant, she found that patients who had been taught systematic relaxation had a lower incidence of adverse postoperative psychological reactions. These studies emphasized the importance of intervening to help the patient prepare for surgery in the hospitalized period. Yet, as was explained previously, the patient who needs CABO surgery is often confronted with a prolonged waiting period. Christopherson & Pfeiffer (1980) observed that "during this critical waiting period, patients have more than enough time to minimize or exaggerate their fears about the impending operation" (p. 854). Despite this observation, only two studies were found that addressed the need for intervention prior to hospital admission. Christopherson and Pfeiffer (1980) investigated the effects of the timing of preoperative Information on preoperative anxiety and postoperative recovery In CABO surgery patients. An educational booklet that explained the experience of having surgery was the format chosen to provide information. An expermimental design was used and included three groups -- a control group who did not read the booklet, an experimental group who read the booklet 1 to 2 days prior to surgery, and another experimental group who read the booklet anywhere from 3 to 35 days preoperative^. It was found that patients who did not read the booklet had significantly lower knowledge scores and longer hospitalizations. The group who read the booklet before admission to hospital had the lowest levels of preoperative anxiety, although this was not at a level of 23 slQnlTlcance. The group who read the booklet 1 to 2 days preoperative^ showed a significant decrease in anxiety levels from the pre- to the postoperative period and also had the shortest hospital stays. This group however, was the youngest in age, had the fewest number of bypass grafts, and spent the least time on cardiopulmonary bypass. This observation and the small size of the groups led the researchers to decide that no definitive conclusions could be drawn as to the most appropriate timing of preoperative information. Christopherson and Pfeiffer (1980) based their study on a presumed need for information during the waiting period. They did not attempt to determine beforehand what information was appropriate from the patient's perspective nor did they examine the effect of reading or not reading the booklet upon the experience of waiting in the home. They did report, however, that most of the subjects who received the booklet before hospitalization stated they read it several times promptly upon arriving home. In an exploratory study, Coombs (1987) Investigated the educational needs of CABG patients as expressed by them and their significant others. Little information was provided about the precise methodolgy used to collect and analyze data. Coombs did state, however, that both quantitative and qualitative data were obtained. Although she included postsurgical patients as well as patients who were at least four days presurgery, some of her findings were applicable to the current study. Expressed needs were generally in the areas of appropriate activity, risk factors, mental preparation for surgery, lifestyle management, and ways to "counter mental reactions which occurred as they awaited... surgery" (p. 38). Subjects indicated a willingness to attend programmes prior to hospitalization and most reported that the day before surgery was too late to be given information because their high anxiety levels interfered with absorption of the content at that time. The results of this research strongly suggested a need for intervention during the preadmission time of waiting. 24 This first section of the literature review provided important fundamental support for the problem being addressed in this study. The stressful nature of the preoperative period, particularly for the patient awaiting open heart surgery, was documented. It was clearly established that the preoperative period is a significant phase of the total surgical experience worthy of Investigation and intervention In Its own right. A limitation of the above literature review with respect to this study was that it provided little information about the phenomenon of "waiting" as it relates to surgery. Another limitation was that, for the most part, the preoperative period has been conceptualized as including only the hospitalized waiting time. Would it not seem reasonable to suggest that the "work of worrying" (Janis, 1958) commences long before admission to hospital for surgery and that the home waiting period is therefore in need of investigation? To address both of the latter concerns, a second literature review was undertaken which focused more specifically on the phenomenon of waiting for CABO surgery and, in particular, the situation of prolonged waiting. Waiting for CABG Surgery The literature review revealed a paucity of studies pertaining to a prolonged waiting period before CABG surgery. A wider research review therefore appeared to be in order. It seemed reasonable that a logical area to explore would be literature pertaining to awaiting transplant surgery because of conceivable similarities between that situation and the one being addressed in this study. Yet, surprisingly, this researcher's search found the literature to be silent in this regard. This gap in the literature W8S also identified by Weems, Taylor, and Davidson (1983) who evaluated the effect of written communication to patients awaiting renal transplant. They commented that "the literature revealed an absence of nursing studies related to a prolonged waiting period prior to surgery" (p. 23). The literature revealed one study however, which did indicate that waiting for CABG 25 surgery was a particularly stressful ph8se of the total surgical experience. This descriptive study examined, from the perspective of patients and their spouses, sources of stress associated with CABG surgery and recovery (Gilliss, 1984). Two semi-structured interviews and a survey that measured stress were administered 3-8 days postoperatively. The most frequently identified stressor was that of waiting for surgery. Little explanation was offered, however, as to why the waiting time was regarded as most stressful. The researcher observed that some participants had felt desperate to find a surgeon to perform their surgery after initially being refused due to the severity of their illness. It was her suggestion that "perhaps as a result of having to wait for surgery, many patients and spouses denied any stress associated with the hospitalization itself" (Gilliss, 1984, p. 105). She concluded that it was, rather, a relief to have the surgery successfully performed. Because she did not provide a timeframe to explain what was meant by "waiting for surgery", it is difficult to predict the generalizability of her finding. Some additional support for the perspective that the waiting period is stressful was demonstrated by Carr and Powers (1986). In their study, both patients recovering from CABG surgery and nurses who regularly cared for patients having cardiac surgery ranked 30 stressors according to degree of severity. "Having cardiac surgery" was ranked the highest by both patients and nurses. A notable finding was that the "interval before surgery" was ranked eighth in severity by patients and seventh in severity by nurses. The generalizability of that finding to the current study is questionable, however. In that study, the "interval before surgery" referred exclusively to the time spent waiting in hospital which ranged from 1 to 20 days (mean = 6.6). The period of waiting in the home was not considered as a potential stressor. The time between cardiac catheterization and surgery ranged from 1 to 150 days (mean = 16). It was obvious, therefore, that most of the patients in their sample had not experienced prolonged waiting periods 26 and that their situation was not analogous to the one being Investigated in this study. An extensive description of the hospitalized period of waiting for cardiac surgery has been presented by Rakoczy (1976; 1977). Using the interview method for data collection, she asked open-ended questions to elicit descriptions of the thoughts and feelings of patients during the three day waiting period preceding the day of surgery. Rakoczy found that the thoughts and feelings tended to occur in groupings throughout the three day period. The patient normally progressed through the following phases: "confrontation," characterized by rationalizing the need for surgery, feeling helpless and afraid, and identifying supports; "self-reflection," characterized by identifying causes of the heart problem and grieving the associated losses; "resolution," characterized by internalizing the meaning of surgery and incorporating this into one's self-concept; and "countdown," characterized by an almost unbearable counting off of the remaining time. Although it was apparent that a qualitative methodology was used to guide the study the precise mode of data analysis was not described. Rakoczy's study (1976; 1977) provided significant information about the complexities of individuals' reactions to impending heart surgery; however, the applicability of its findings to the situation of waiting for prolonged periods in the home before surgery was difficult to determine. Unfortunately, Rakoczy did not specify how long patients had waited for surgery before entering the hospital. She only stated that there was a four day waiting period in hospital before surgery. Furthermore, the study was conducted more than a decade ago and included both patients scheduled for bypass grafting as well as valvular surgery. Whether or not there were differences in the experiences of awaiting surgery for these two groups was not an aspect addressed by the study. Nonetheless, it is certainly plausible that individuals with prolonged waiting periods are apt to undergo a similar confrontation with the reality of their surgery and reflection upon their illness while waiting in the home. However, in the absence of research it is 27 impossible to reach such a definitive conclusion. Blacher (1987) observed that when individuals must wait a month or two for cardiac surgery, they live " in a state of suspended animation, with a certain degree of anxiety that bubbles up occasionally" (p. 47). A similar situation was conveyed by Morgan (1971) who found from his interviews with 72 preoperative cardiac patients that the waiting period was recalled in a negative way. In his study, patients had often waited 2 to 4 months for surgery. His analysis was that "no one could take this time calmly. All waited with increasing anxiety for the post to come" (p. 42). Although Morgan's study did not include patients scheduled for CABG surgery, his finding clearly Illustrated that prolonged waiting Is difficult. Indeed, he suggested that if anything could be done to "reduce the waiting time between pronouncement of the operation being necessary and its actual occurrence this would be advantageous to these patients" (p. 46). Two studies were found which specifically investigated the waiting period before admission to hospital for CABG surgery. Pieper, Lepczyk, and Caldwell (1985) examined the perceived impact of waiting for CABG surgery on male surgical candidates' lives. Their main data collection tool was a questionnaire with two itemized subscales, the general life scale and the spousal relationship scale. Subscales were also used to measure the mood states of anxiety, depression, and fatigue. Major findings were that waiting was perceived to have a negative effect on ability to be employed outside the home and a positive effect on interest in life and closeness to spouse. A longer waiting period before surgery was significantly related to a lower perceived effect of waiting on life and relationship with spouse. Men with a longer waiting period rated the effect of waiting on life toward the positive end of the scale. Of the three mood states that were evaluated, scores were highest for anxiety. Mood scores significantly correlated with the total life-effect score in that higher mood scores were associated with a greater perceived effect of waiting on life. High concern for surgery ratings were related to higher perceived effects of the waiting period on 25 life and spousal relationship. The results of the Pieper and colleagues' (1985) study provided important preliminary validation that waiting for CABG surgery does have a significant impact on an individual's life. Indeed, it singly provided the most information about how waiting is believed to affect one's life before having CABG surgery. However, the generalizability of Its findings are limited because the sample was small in size (n=28) and restricted to male subjects aged 40 to 64 years who were engaged in a relationship with a partner. Also, the authors stated that the average preoperative waiting period ranged from 2 to 4 weeks and that subjects in their study had waited 7 to 76 days since being told of their need for surgery. Their perceptions of waiting, consequently, may differ from those who face longer waits of undetermined duration, such as is the situation in this study. In a study by Radley and Green (1986), a combined questionnaire/semi-structured interview approach was used to examine the ways that male patients and their wives adjust to heart disease while awaiting CABG surgery. Analysis of the Interview data revealed that over one-third of the men reported marital strain, almost half of them had a reduced work status, and more than half had reduced leisure activities. Through combined analysis of the interview and questionnaire data it was demonstrated that men who had trouble coming to terms with their Illness, as demonstrated by defeat, dependency, anger, or fright, tended to have difficulties within the marital relationship. Accommodations by men to illness were seen to be adjustments involving both husband and wife. Radley and Green suggested that it was more difficult for men to achieve accommodations to illness when their heart condition deprived them of their employment, placed financial constraints on the household, and increased burdens upon their wife. The findings of the study by Radley and Green (1986) lend further credence to the perspective that the period of waiting before CABG surgery has a significant impact on the involved individuals. They specifically demonstrate that "bearing illness" is an important 29 dimension of the waiting period before CABO surgery. The study has limitations, though, in that it focused exclusively on married male surgical candidates between the ages of 33 and 65 years, and their wives. Furthermore, it was conducted early in the waiting period, usually within the first two weeks of angiography, which, in light of this study, would represent only the initial weeks of the total waiting experience. Additionally, the study was conducted in Great Britain and differences in culture and health care delivery may reduce its applicability. Because no information was provided about the expected duration of the waiting periods, it was difficult to know if the context of their research was analogous to that of this study. Concerns While Waiting Radley and Green (1986) reported that respondents In their study spoke of the waiting period as a "difficult one bringing worries to the surface" (p. 579). However, they did not elaborate upon their statement. Derrick (1979), a patient who underwent CABO surgery, also described waiting as being accompanied by worrying. What has research revealed about the worries or concerns of individuals who await CABG surgery? Some studies, although not expressly addressing the waiting time before CABG surgery, did provide insights into these concerns. Yamada (1984) conducted a phenomenological investigation into the illness experience of clients who underwent CABG surgery. Through interviews with seven clients it was found that the waiting time was recalled postoperatively as a significant benchmark of the total illness experience. Although Yamada did not specify the time each client spent waiting for CABG surgery following angiography, she did Indicate that the minimum and maximum times werel 2 days and 6 months respectively. Her informants recalled that during the waiting time they had had several concerns. These primarily centred around fear of heart attack and stroke, anxiety of the unknown related to the surgical experience and convalescence, and a dislike for waiting itself, 30 particularly If It entailed cancellation or delay. The majority of the illustrated concerns were discussed in relation to the hospitalized rather than the home experience of waiting. The threat of having a heart attack while waiting surfaced from the literature review as a universal concern of this time period. In a roundtable discussion with eight patients who had CABG surgery, one author found that the decision to undergo surgery was motivated by fear of a heart attack (Borders, 1985). Penckofer and Holm (1984) reported from their research on quality of life post CABG surgery that the "threat of a heart attack or sudden death no longer appeared as overwhelming concerns" (p. 63) in the early recovery period. These researchers also indicated that patients recalled feelings of uncertainty about the future and fear of the unknown prior to surgery. In the context of her research into the spouses' experience of having a mate undergo CABG surgery, Cozac (1985) also found a high concern for the possibility of a heart attack. She reported that "during this time [the spouses] lived in constant fear th8t their mate would suffer a massive myocardial infarction and die before the operation" (p. 54). Coping Strategies While Waiting The Lazarus stress and coping framework reviewed in the first chapter of this thesis indicated that when a situation generates concerns (i.e. is appraised as stressful) it becomes necessary for the individual to cope In some manner. The preceding paragraphs have provided preliminary documentation about concerns of the individual awaiting CABG surgery. In light of these considerations, coping was seen to be another facet of the waiting experience requiring examination in view of the literature. King (1985) Investigated coping strategies used by individuals as they progressed through the experience of having CABG surgery. Preoperative evaluation of coping occurred on the day prior to surgery when a questionnaire with six categories of coping was administered. Subjects were asked to respond to questions by indicating whether a particular strategy had been used, 31 rating its helpfulness on a 5-polnt scale, and explaining why it had been used. It was found that all coping strategies were used by most subjects during the preoperative period. Information seeking, for the purposes of determining what one would experience and comparing oneself to others, was used by all subjects. Positive thinking, which was used by 74SB of the subjects, was reported to be the most helpful coping strategy. Avoidance and direct action strategies were used respectively by 78 % and 94 % of subjects but found to be only minimally helpful. Direct action was used as an attempt to continue doing routine activities while awaiting surgery. Subjects stated they used avoidance to ease their minds. Turning to others was employed by 72 SB of subjects and deemed to be somewhat helpful. The strategy utilized the least and regarded to be least helpful was that of imagery. King suggested that this was probably because subjects "did not have first-hand experience from which to formulate images or plans" (p. 584). The research by King (1985) offered valuable information about the coping strategies of individuals awaiting CABG surgery. However, Its focus was entirely on coping In relation to the prospect of surgery, which is actually only one aspect of the waiting experience (e. g. recall the importance of the illness facet demonstrated above by Radley and Green [ 1986]). Furthermore, a problem occurred in predicting its generalizability because it was impossible to discern whether subjects were reporting coping strategies used only in the hospitalized period or whether they were also recalling coping strategies used prior to admission. Yamada's (1984) phenomenological study about the experience of having CABG surgery also imparted information about ways individuals cope while waiting for surgery. She concluded that "clients made sense of their wait by managing their illness and preparing themselves for the operation" (p. 98). The clients' retrospective accounts revealed that information seeking, accomplished primarily by reading and conversing with ex-CABG surgery patients, was used to understand the surgery and prepare for the experience. Being hopeful, thinking positively, and 32 trusting in God emerged as ways of coping with the prospect of surgery. During the hospitalized preoperative time, individuals coped with waiting by using distraction techniques and trying to make sense out of delays. The only information provided about coping with waiting prior to entry to hospital was that one client had found it helpful to remain employed until surgery as a means of distraction. Some insight about the ways individuals cope with illness while awaiting surgery was provided by a British study (Radley and Green, 1985) that examined pre- and postoperative styles of adjustment to CABG surgery. Preoperative interviews were conducted with 40 patients In hospital three days prior to surgery. During these Interviews, structured questions were used to elicit responses that enabled the researchers to categorize the patients' styles of adjustments into four pre-established modalities: accommodation, 8ctive-denial, secondary gain, and resignation. It was found that some patients reportedly denied that symptoms affected their lives and continued with most of the same activities. Others made accommodations to their illness by knowing limitations, decreasing activities, and monitoring progress. Still others gave up several activities and took on new ones of less importance to them. Radley and Green concluded that patients awaiting CABG surgery coped with their illness and its impact on their lives in different ways. The findings Illustrated generalities about coping with Illness while waiting for CABG surgery; however, they did little to add specificity to the available knowledge about coping strategies. The studies described above provided beginning information about coping strategies of the waiting period. Information seeking and positive thinking emerged as prominent coping strategies of the waiting period. However, most of the documentation focused upon coping with the prospect of surgery and secondly upon coping with illness. What was visibly lacking was information about how individuals cope in situations of prolonged waiting with an unknown 33 timeframe. Furthermore, there was sparse information about how individuals cope with "waiting" itself as a distinct entity. This second half of the literature review revealed a paucity of research investigating the experience of waiting for CABO surgery. Although the literature offered some preliminary Insights into the experience of waiting, the applicability of the Information to this study was frequently in question. At best, it provided this researcher with only a limited, piecemeal understanding of the experience under investigation. Obviously, more research is needed to obtain a comprehensive understanding of prolonged waiting before CABO surgery. Further exploration into the meaning of the experience of waiting for the Involved individuals, including the emotional reactions, concerns, and coping efforts that occur over time while waiting, would add to the knowledge base about this time period. This research is essential if nurses and other health care professionals are to provide quality health care based on systematic investigation of these individuals' concerns and needs. Chapter Summary This chapter has presented an exploration and analysis of literature relevant to the experience of waiting for CABG surgery. In doing so, it has accomplished two objectives; firstly, insights into the experience of concern have been provided and secondly, the need for this study has been distinctly validated. From the literature review, it is evident that the preoperative period has major significance for the waiting individual and consequently, also, for the providers of preoperative care. Although the literature documented that waiting for CABG surgery is a "stressful" experience, little substantial evidence was found that indicated what is meant by the term "stressful" from the patient's perspective, or the ways that individuals react to and cope with that perceived stress. This was particularly so for the situation of prolonged waiting before surgery. On these grounds it was concluded that the prolonged period of waiting before CABG surgery represented a fertile research area just "waiting" to be investigated. The succeeding chapter explains the methodology that was used to guide the study. 35 CHAPTER THREE METHODOLOGY In this chapter, the research process undertaken to answer the study's question is explained. Because the purpose of this study was to explore and describe the experience of weiting for CABG surgery, a phenomenon about which little is known, an exploratory descriptive design using the qualitative method of phenomenology wes selected. As will be explained in this chapter, phenomenology is considered the method of choice when one seeks to understand a phenomenon from the perspective of those experiencing it. The chapter commences with an overview of the methodological approach, which is presented in some detail for the benefit of those readers who may be less familiar with qualitative methods of research. Specific explanation is provided of the phenomenological method and its congruence with the Lazarus stress and coping framework used to guide the study. Following that, the processes of participant selection, data collection, and data analysis are described. The chapter concludes with a discussion of the study's ethical considerations. Overview of Methodological Approach As has been indicated, the design of this study was qualitative and guided by the theoretical perspective of phenomenology. Qualitative research methods can be defined as "descriptive analytical investigations of the world of human experience" (Field & Morse, 1985, p. 20) which seek an understanding of everyday life events from the viewpoint of the involved individuals (Field & Morse, 1985; Leininger, 1985a). These methods differ from quantitative ones in that their aim is not to determine causal and measurable relationships among variables but rather to describe, understand, interpret, and generate theory about the nature and meanings of life experiences (Field & Morse, 1985; Leininger, 1985a; Parse, Coyne, & Smith, 1985). 36 Different criteria are thus used to appraise validity and reliability in qualitative research. Findings are valid and reliable to the extent that they aid in knowing and understanding phenomena as fully as possible and "consistently reveal meaningful and accurate truths about particular phenomena" (Leininger, 1985b, p. 69). Being grounded in humanistic ideology, qualitative methods are philosophically congruent with the nursing profession's stated beliefs in holism, uniqueness, and reality as experienced (Leininger, 1985a; Munhall & Oiler, 1986). As such, these methods offer fertile approaches to research within the domain of nursing (Davis, 1978; Leininger, 1985a; Munhall, 1982; Munhall & Oiler, 1986; Oiler, 1982; Ornery, 1983; Swanson & Chenitz, 1982). The Phenomenological Approach The qualitative research method of phenomenology is directed toward description of human experience as it is lived (Merleau-Ponty, 1962). Ouiding the phenomenologist is the directive to "take what is experienced just as it gives itself in any instance" (Husserl, 1977/1962, p. 42). Because perception is viewed as the key to accessing human experience (Merleau-Ponty, 1962), the phenomenologist attends to "the perceived world, to the question of how phenomena appear to people in experience" (Oiler, 1986, p. 81). Phenomenologists ask the simple question, "What is it like to h8ve a certain experience?" (Van Manen, 1981, p. 25). The phenomenological method was therefore considered appropriate to answer this study's question which sought to describe the lived experience of waiting for CABG surgery from the perspective of the involved individuals. Phenomenology Is an Inductive, descriptive approach to research (Munhall & Oiler, 1986; . Ornery, 1983). Fundamental to it is the requirement that the researcher's assumptions or preconceptions about the phenomenon under investigation be stated and then set aside or "bracketed" in order to avoid imposing prior conceptual presuppositions (Davis, 1978; Oiler, 37 1986; Ornery, 1983; Valle & King, 1978). In this way, the subject matter can be approached with an open mind that "accepts experience as it exists in the consciousness of the individual" (Field & Morse, 1985, p. 28). In phenomenology, the descriptive accounts of the participants, which constitute the data, are analyzed using a series of operations which transforms them into a final description of the experience in the language of the researcher (Parse et al., 1985). It is through this process that the meaning of the phenomenon as humanly experienced is elucidated and described as faithfully as possible. Congruence of Phenomenology and the Lazarus Stress and Coping Framework The phenomenological method is conceptually congruous with the Lazarus stress and coping framework upon which this study was based. Lazarus (1981) states that his approach to stress and coping is "explicitly cognitive-phenomenological" (p. 180). The reader will recall from the first chapter that central to the Lazarus framework is the notion of cognitive appraisal, a process through which individuals' reactions are shaped by subjective perceptions. The Lazarus framework thus emphasizes, as does the phenomenological method, the importance of perception and subjective experience. Furthermore, both methods direct the researcher to the natural setting to obtain descriptive data about everyday reality from the perspective of the people themselves. As will be seen, these guidelines provided direction for the research design of this study. Selection of Participants In phenomenological research the study sample is drawn from a population living the experience of the phenomenon under investigation (Oiler, 1982; Parse et al., 1985). It is believed that the personal experience of these individuals makes them the most legitimate and accurate source of information. For this study, that meant that individuals who were waiting to have CABG surgery qualified as the "experts" who could "speak to the experience" and provide the 38 needed Knowledge. Criteria for Selection Participants for this study were drawn from the cardiac surgery waiting list of a large metropolitan teaching hospital where CAB0 surgery was routinely performed. For the purposes of this study, participants were selected who met the following criteria: The participant must have-1. lived within the metropolitan area 2. been scheduled for nonemergent CABO surgery with no concomitant cardiac procedures 3. had no previous open heart surgery 4. resided in the home during the waiting period before CABG surgery (that is, been discharged home following angiography) 5. waited a minimum of one month on the cardiac surgery waiting list 6. had no current psychiatric illness or major debilitating chronic disease other than cardiovascular disease 7. been fluent in oral and written English The first criterion was established for the convenience of the researcher. The next four criteria were set to confine the study to individuals who had prolonged waiting periods before first time elective CABG surgery. It was thought that the exclusion factors identified in the second, third, and fifth criteria were required because their presence could have significantly altered the meaning of the experience. The last criterion was necessary to make data collection possible through Interviewing. Selection Procedure In order to gain access to prospective participants several steps were taken. Prior authorization for the study W8S obtained from the University of British Columbia Behavioural 39 Sciences Screening Committee and the Research committee or the involved hospital. The hospital representative who gave approval for the study simultaneously granted permission to use the hospital's cardiac surgery list to recruit participants. Upon the advice of the hospital representative, the Head of the Division of Cardiovascular Surgery at the hospital was then approached in order to obtain verbal approval for the study and permission to contact the cardiothoracic surgeons. Following that, letters of information about the study were sent to the cardiothoracic surgeons with a request for permission to contact patients listed under their services on the waiting list. Five surgeons responded and granted the researcher permission. Names of individuals who met the stated criteria and who were listed under the services of consenting surgeons were then drawn from the waiting list by a nursing representative of the involved hospital. Following that, the selection of prospective participants proceeded in one of two ways. In the first, names of individuals listed under the services of four of the surgeons were given to the researcher by the nursing representative. A letter of information about the study (see Appendix A) was then promptly mailed to each. Alternatively, one surgeon requested that his receptionist call the selected prospective participants to ask them if they were interested in receiving a letter about the study. If an interest was indicated, then the name of the individual was provided to the researcher by the nursing representative and subsequently a letter of information about the study was sent. Prospective participants were telephoned about one week following mailing of the letter to determine their decision about participation. At that time further explanation of the study was provided as necessary and arrangements for the first interview were made with consenting individuals. Prior to beginning each first interview, the researcher addressed any remaining questions and obtained a written consent (see Appendix B) to participate from the participant. The selection process occurred over a five week period. Initially, letters were mailed to 40 four prospective participants. Additional names were selected from the waiting list on a weekly basis until the sample size was sufficient to generate the needed data. Adding participants gradually to the study made it possible to space the interviews evenly so that transcription and analysis could occur between interviews, to conduct the first interviews promptly after confirmation of participation, and to include in the study both male and female individuals of differing ages who had been waiting various lengths of time for surgery. The principle of "theoretical sampling" (Glaser & Strauss, 1967) guided this process in that participants joined the study according to the need for further expansion and clarification of data. After interviewing seven individuals, considerable redundancy In descriptions was noted; thereafter, two more individuals joined the study to confirm the researcher's impression that the data were adequate. A total of 12 letters were mailed to prospective participants during the five week period. Nine of these individuals agreed to participate. Of the three individuals who chose not to participate, one declined because she didn't "appreciate" talking about her situation which she described as being "boring," "upsetting," "maddening," and "discouraging." She also said that she felt "useless" and found she was becoming increasingly impatient with others. Although she declined, she told the researcher to call her back if a problem arose in obtaining sufficient participants. The second individual declined because he had just received notice that he would have his surgery within two weeks and felt too nervous to discuss it. He described his eight month waiting period as a time of "sitting around on pins and hooks" and expressed disappointment in what he perceived to be unfair management of the waiting list. He offered to be interviewed following discharge home after surgery. The third individual did not give a specific reason for opting to not participate. A description of the individuals who agreed to participate in the study is provided at the beginning of the following chapter. For the most part, consenting individuals promptly indicated 41 an Interest and willingness to participate in the study. Some of them, however, expressed doubt about the worth of their potential contribution to the study. This tendency to initially doubt that one knows enough to be helpful to the researcher is also reported by Spradley (1979). By expressing a genuine interest in the participants and assuring them of the merit of their description of their unique experience, this hesitancy to participate was overcome. Data Collection In order to obtain the rich, in-depth data needed to answer this study's question, audio-taped interviews served as the major mode of data collection. Interviews were semi-structured in that they were loosely guided by open-ended questions. The rationale for choosing a semi-structured interview was that this format elicited both definitive and unexpected kinds of information from the participant (Leininger, 1985b). Open-ended questions were preferable because they allowed a free response from the participant's perspective rather than a response restricted to or guided by specified alternatives (Brink & Wood, 1983). Such a methodological approach is appropriate for an exploratory, descriptive study (Diers, 1979). The initial interview questions for this study (see Appendix C) were generated by the study's research question, the literature review, and the Lazarus stress and coping framework. Demographic data and background information about the participant (see Appendix C) were obtained prior to commencing the initial interview questions. It was explained to the participants that this information was needed to describe the sample and would be considered when analyzing the data for themes. The interview data were supplemented with fieldnotes which were dictated into a recorder by the researcher immediately following each interview. The researcher's observations about the interview setting and nonverbal communication during the course of the interview comprised the content of these fieldnotes (Field & Morse, 1985). All interviews took place in the participants' homes, although the option of meeting at the 42 researcher's home was offered. The participant's home was preferable, though, because it provided a familiar, relaxed setting which was more conducive to participant disclosure (Ornery, 1983). Rapport was established with ease and most participants volunteered detailed information with few questions being asked of them. No one found the presence of the tape recorder to be inhibiting. The question "What has it been like for you to wait for surgery?" typically commenced the first interview. One participant, however, initiated an in-depth account before a question was even asked. Although the interview guide offered some structure to the interviews, the precise wording and sequence of questions varied from one participant to another. Questions were asked as required, depending on the material naturally recounted by the participant. By allowing participants freedom to describe their experiences in as much depth as they wished, the questions on the interview guide were frequently addressed without the prompting of the researcher. A total of 17 interviews were conducted. Eight participants were Interviewed twice; one participant was interviewed once. It was impossible to conduct a second interview with this latter participant because of his repeated admissions to hospital. Within a week of being interviewed he was hospitalized for a myocardial infarction; thereafter, he had two more admissions for management of congestive heart failure. On the third admission he was retained in hospital until such time CABO surgery could be performed. These events precluded a repeat interview with him. Between interviews the researcher listened to the tape, transcribed it verbatim, and then planned for the next interview by developing another set of open-ended questions based on the previously collected and analyzed data (Field & Morse, 1985). All first round interviews were completed and analyzed before commencing the second round. The purposes of having the second interview were threefold: to clarify statements from the previous interview, to validate the 43 emerging themes, and to obtain information about the participant's ongoing experience (Swanson-Kauffman, 1986). Second interviews enabled the researcher to investigate new aspects of the experience that had surfaced from the analysis of the first round of interviews. For example, during the first set of interviews several participants spontaneously offered their understanding of why they were still having to wait for surgery. This then became an area explored with all the other participants in the second interview. Three to five weeks' time elapsed between first and second interviews, interviews were completed with each participant prior to his or her admission to hospital for surgery. All interviewing occurred within an eight week period. It was estimated that each interview would last from one to two hours. In actuality, however, the duration of the taped portion of the interviews ranged from 35 to 135 minutes each (mean=85 minutes), making a total of 24 hours of transcribed taping. The time spent at the participants' homes was considerably longer and ranged from 65 minutes to 4 hours per visit (mean=2 hours, 30 minutes). The visit time in excess of the taped interview time incorporated the following activities: explaining the study, obtaining participant's consent, collecting demographic data and background information, meeting other family members, enjoying a refreshment break, and engaging In social conversation. During this time the participant often discussed other aspects of health care unrelated to the study question. Not infrequently, however, comments of relevance to the study were made when the recorder was off. If possible, the recorder was turned back on to obtain as much of the description as possible. Alternatively, the researcher talked these into the recorder from memory immediately after the interview. If these remarks had occurred during the first interview, the participant was asked to speak to them again during the second interview so that they would be recorded on tape. In keeping with the phenomenological approach, data collection ceased when the researcher 44 detected redundancy of statements within and across participants* descriptions (Parse et al., 1985). For the most part, this was observed to have been accomplished after completing two interviews with eight of the nine participants. One exception requires explanation, though. At the time of the second interview, three participants had received word that they would soon be admitted to hospital for surgery. This new piece of information had a significant effect on the experience of waiting. However, due to time constraints of the researcher it was not possible to continue interviewing all participants up to the time when they would be admitted to hospital for surgery. Data Analysis It is through data analysis that the phenomenologist elucidates the essence of the phenomenon under investigation and arrives at an understanding of the meaning of the experience for the participant (Parse et al., 1985). To accomplish this, the researcher moved through a series of clearly specified analytical operations. It Is Important to realize that although data collection and analysis have been presented separately here, they actually occurred concurrently. Stated more explicitly, these two processes were intertwined such that throughout data collection, the researcher analyzed or attempted to "make sense" of the incoming data and in turn used the results of analysis to shape the direction of future interviews. This was in keeping with the qualitative approach in which there is no definitive line between data collection and analysis (Olaser & Strauss, 1967). In this study, data analysis was guided by Qiorgi's (1975a, 1975b, 1985) analytical procedure. Oiorgi (1975a) specifies five essential steps to the data analysis process: 1. The researcher reads the entire description straight through to get a sense of the whole 2 The researcher reads the same description more slowly and delineates each time that a 45 transition in meaning, is perceived with respect to the intention or discovering the meaning of... [the phenomenon under investigation]. After this procedure one obtains a series of meaning units or constituents 3. The researcher then eliminates redundancies, but otherwise keeps all units. He [or she] then clarifies or elaborates the meaning of the constituents by relating them to each other and to the sense of the whole 4. The researcher then reflects on the given constituents, still expressed essentially in the concrete language of the subject, and transforms the meaning of each unit from the everyday naive language of the subject into the language of... science 5. The researcher then synthesizes and integrates the insights achieved into a consistent description of the structure of... [the phenomenon]. (pp. 74-75) In other words, the process of analysis entailed studying the participants' descriptions (the transcripts), identifying themes (meaning units or categories) within the descriptions, and then transforming those themes into language of the researcher's discipline (i.e. nursing). The audio-tape of the interview was transcribed verbatim by the researcher as soon as possible after its collection. This was normally accomplished within the next two days. In this way, the tapes were usually transcribed before conducting the next interview. However, on occasion, transcription lagged behind by one interview. Upon completion of a transcript, the researcher read it through and then studied it in more detail noting meaning units and recording them in the margin. As Giorgi (1975b) recommends, initial analysis of the description was approached with an attitude of maximum openness. As analysis proceeded, meaning units were compared and contrasted within and across transcripts to note similarities and dissimilarities, interrelatedness, snd relationship to the whole. During this time the researcher used the techniques of "imaginative variation" and 46 "reflection" (Giorgl, 1985) to test ideas and consider possibilities about what constituted the central essence of the meaning units. From this analysis, beginning categories of themes were developed. After analysis of the seventh interview, a tentative, loosely structural framework was generated that comprised major and minor categories of conceptual themes from all the transcripts. Over time, as more data were collected and analyzed, the components of the initial framework were revised and refined in order that the phenomenon under investigation could be depicted in the most representative and accurate menner possible. As hes been previously explained, the ongoing, cyclical process of data collection and analysis enabled the researcher to return to the participants to have themes validated, refuted, or elaborated upon. Utilizing this analytical procedure then, the researcher was able to develop an understanding of the meaning of the experience of waiting for CABG surgery from the perspective of the participants. Ethical Considerations Measures were taken to assure the protection of rights of the Individuals who participated in this study. Permission to conduct the study was obtained from the U.B.C. Behavioural Sciences Screening Committee and the Research Committee of the involved hospital prior to approaching any prospective participants. The selection procedure ensured that only the researcher knew who ultimately agreed to participate in the study. Initial contact from the researcher was made by mailing each potential participant a letter which explained the purpose and nature of the study as well as the implications of participating in it (see Appendix A). In the letter it was explicitly stated that participation was strictly voluntary and that participants had the right to refuse to participate, to withdraw from the study at any time, and to refuse to answer any questions without jeopardizing future health care. Participants were informed that no risks were anticipated, nor was there financial remuneration for choosing to participate. Although there were no guaranteed benefits, it was suggested that the opportunity to share their experience with 47 a health professional might De helpful to them and that the results of the study might be helpful In the future health care of individuals in similar circumstances. Prospective participants were provided an opportunity to ask any questions regarding the study and to have these satisfactorily answered prior to giving consent. Before commencing the first interview, a consent form (see Appendix B) was signed in duplicate by each participant in the presence of the researcher, with the participant retaining a copy. Because the interviews were audio-taped, participants were free to request erasure of any tape or a portion thereof at any time during the study. Confidentiality and anonymity were maintained by restricting access to the raw data to the researcher and members of her thesis committee and by coding the participants" names and deleting identifying information from the transcripts. Participants were advised that the tapes would be erased upon completion of the study and that names or other identifying data would not be included in any published or unpublished materials arising from the study. A summary of the study's findings was offered to all participants. Chapter Summary This chapter has described the methodology that guided this study in its exploration of the experience of waiting for CABO surgery. An explanation of the qualitative research method of phenomenology and the appropriateness of this method for addressing this study's question was provided. Also specified were the criteria and procedure for selecting participants. The concurrent processes of data collection and analysis in relation to qualitative methodology and the analytical procedure of Oiorgi (1975a, 1975b, 1985) were discussed. Lastly presented were the ethical considerations adhered to throughout the research process. In the following chapter, the participants' accounts of waiting for CABO surgery are described. 48 CHAPTER FOUR FINDINGS This chapter presents the results obtained using the previously described phenomenological method. Toward that end, the chapter is organized into two sections. The first section provides a general description of the participants who comprised the study's sample. The second section, which forms the major part of the chapter, reports the findings generated by the combined processes of dat8 collection and analysis. This latter section is presented in the form of the accounts of the participants and provides a description of their experience of waiting for CABO surgery as it was interpreted by the researcher. Characteristics of the Participants Seven men and two women participated in the study. Their ages ranged from 46 to 75 years (median=55) and were distributed as follows: two were in their 40s, three in their 50s, three in their 60s, and one in his 70s. Six of the participants were married and lived with their spouse. One individual was widowed and two others were separated. These latter three individuals lived alone although one shared half of a duplex with her son and his wife. Two of the married participants had one or two adult children temporarily residing In the home. All of the participants were Caucasian and seven were Canadian born. The other two individuals had resided in Canada for 20 and 30 years, respectively, after emigrating from Europe. A variety of occupational backgrounds were represented by the participants. During the waiting time employment status varied considerably with three individuals being retired, one receiving Disability Pension, four being paid sick leave from usual full-time employment, and one being employed full-time. Some variability of educational background was also present. Although most of the participants had graduated from high school, formal schooling actually 49 ranged from Grade 8 to an undergraduate university degree. All but two participants had undergone previous general surgery. At the time of the first interviews, histories of diagnosed cardiac illness ranged from 3 months to 10 years with first awareness of the illness coinciding with a myocardial infarction (Ml) for seven of the participants. Four of these seven had sustained their first Ml within the last year. Two individuals had a history of having had two Mis. The two participants who had not had Mis had known of their illnesses for 7 to 8 months; coronary angioplasty had been unsuccessfully attempted twice for one of them. During the waiting time, two participants required hospitalization. In both cases, this occurred between the first and second interviews when one had a 9 day admission for management of angina and another was hospitalized once for a documented Ml and two times subsequently for management of congestive heart failure. On the third admission this participant was retained in hospital until such time CABG surgery could be performed. Minor secondary illnesses were reported by two participants. These included gestational diabetes (managed with an oral hypoglycemic) and mild emphysema. Another participant had undiagnosed leg pains for which surgical intervention might be required. Additionally, one individual reported that he had an abdominal aortic aneurysm which needed to be surgically repaired after CABG surgery. The presence of these other health problems gave rise to one or two additional concerns for each of the involved participants; otherwise, their experiences shared commonalities with those of the others. In all four cases, the accounts focused upon their coronary artery disease and related need for CABG surgery. At the completion of the second interviews, participants had waited varying lengths of time since angiography confirmed their need for surgery. This ranged from a minimum of 11 to 13 weeks (n=3) to a maximum of 11 1/2 months (n= 1). Three people had waited 16 to 18 weeks 50 and another two had waited 6 and 8 112 months respectively. The majority of the participants were anticipating three (n=5) or four (n=2) coronary artery bypass grafts. One individual had been told he would receive two or three grafts while another had not yet been informed about the number of grafts to be performed. All but one participant had met their surgeon. Additional contact with health care professionals during the waiting period consisted of visits to a family physician and/or cardiologist. The agency did not provide a preoperative educational programme during the waiting time; rather, formal preparation for surgery commenced with hospitalization. Accounts of Waiting for CABO Surgery The remainder of this chapter will be devoted to the accounts of the participants which provide a description of the experience of waiting for CABO surgery. All participants described their waiting as a dynamic process in which they were engaged on an ongoing daily basis. Although participants were often told at the outset they could present their "story" in whatever manner they desired, not one participant presented his or her account as a narration of chronological events leading up to and including the situation of waiting for surgery. Always, the focus was on the daily lived experience of waiting with thoughts of the past, present, and future being used to appraise the current situation. The accounts were unique in their details as each participant described the significant aspects of his or her personal experience. Nonetheless, common themes representing the shared aspects of the experience were readily discernible. Three major facets of the experience which prevailed in all the accounts emerged as core themes. Specifically, the illness, the upcoming surgery, and the wait itself represented the critical components of the experience. The overall appraisal of illness was thematically described as a loss of normalcy. The upcoming surgery, although perceived to be threatening, primarily represented an opportunity to regain normalcy. The wait, in turn, represented an intervening variable between the other two facets which was 51 appraised as enhancing the losses and threats associated with the illness and delaying the gain expected from surgery. Additionally, the wait was appraised as generating losses and threats of its own. Woven throughout the three facets of the experience were the themes of threat of loss and uncertainty. All participants conveyed an ongoing appraisal of each facet of the experience in terms of the meaning it had for them in their daily lives. They also described their psychological and emotional reactions and the ways that they tried to deal or cope with the illness, the anticipated surgery, and the wait. Meaning (of the facet), psychological/emotional reactions, and coping thus became organizing tools for discussing the three major facets of the experience. Although the experience could be conceptualized as having three distinct facets, the facets actually were interrelated in a complex manner such that appraisal of one facet continually influenced appraisals of the other two facets. In order to present this as clearly as possible, the researcher decided that it would be most logical to present the facets as they had chronologically occurred for the participants, that is, firstly the illness, then the anticipated surgery, and lastly the wait. This also seemed appropriate because it was impossible to understand the meaning that the wait had for the participants without first knowing how the illness and the surgery had been appraised. The findings are thus presented as descriptions of the three facets of the overall experience: the illness, the surgery, and the wait. Throughout the presentation, the findings are illustrated with verbatim excerpts from the participants' accounts. This not only provides a rich and vivid illustration of the researcher's interpretation of the experience but also enables the reader to audit the "fit" of the description with the original data from which it was derived (Sandelowski, 1986). The excellent quality of the elicited descriptions enabled the researcher to include excerpts from each participant's account. In keeping with the qualitative research emphasis on 52 the uniqueness of human experience and the consequent variation in an experience across individuals, the report reflects both the typical and atypical elements of the participants' experiences (Sandelowski, 1986). The Illness Facet Meaning of the Illness All participants shared thoughts about what having an illness that required CABG surgery meant to them. The accounts revealed that they appraised the meaning of their cardiac illness in two distinct ways. First of all, the illness was appraised in terms of its general meaning for their lives. The participants described how illness had influenced their current lives and how it might influence their future lives. Secondly, participants demonstrated that they made appraisals of their illness on a ongoing basis in terms of what it meant for them at specific points in time. This latter form of appraisal was directly related to the presence or absence of anginal symptoms. One participant exemplified this with the following statement: "I think that heart patients learn to live in a, a pretend world. If you're good today it's not there. And when it's bad, it's really bad and urn — I think that's what we do." In other words, appraisal of the meaning of the illness was made on the basis of how one felt at a particular moment in time. Loss of normalcy. A theme which pervaded all of the accounts was an appraisal of illness as a loss of normalcy. Participants repeatedly told the researcher about how illness had changed their lives and specifically how they could no longer do things that they valued. The key elements of normalcy which were perceived to be lost were associated with some or all of the following: bodily functioning, leisure/pleasure activities, social functioning, family functioning, and employment and associated finances. All participants perceived a loss of normal bodily functioning Every account contained 53 descriptions of symptoms which participants were presently experiencing. Symptoms between individuals varied considerably. Some participants experienced them primarily with exertion while others also had symptoms at rest. . . . the odd time I get a — chest pain now — very, very rarely lately though. I noticed like uh — if I'm, if I'm out walking I come to a, I have to do a little steep hill or anything, if I have to do a hill, I'd have to - - take a nitroglycerine and it will kind of ease off and then as I think I told you lately I - - I - - I kinda lose my breath. I have great chest pains — urn ~ pressure [points to sternal area] and down my right arm usually. Urn, sometimes, this last one I had — I had terrific pain in my jaw — and neck. They seem to be, each one seems to be more severe... in the pain involved. ~ As you can tell I get very short of breath. I start experiencing pains in my arms, in my shoulders, and a tightness in my, my neck, across my chest. So I really have to be careful because you know — moving at a . . . good clip all my life, all of a sudden . . . I've gotta get down below [the way I used to move]— and, and you forget that. I mean it's easy to say, well take it easy but if you were never a take it easy sort of person - - it just doesn't come naturally. Sometimes I have to get up in the night and — take a nitro and sit on the side of the bed — for awhile — till it wears off. 8et the effect you were sort of going to choke sort of thing and — then it goes off and then you're okay again for awhile. Sometimes participants attributed changes in bodily functioning to the medications they had been prescribed. The only thing that bugs me is I take these pills. I take uh — Isordil and Cardizem — uh - - four times a day. - - And uh - - I feel like I have a lightheadedness from them. I'm sure it's from the pills. This, this kind of bothers me a bit.. . I put the nitro cream on when I go to bed — which gives me violent headaches.... so I just reduce the dosage. The doctor said I could reduce it or even try going to bed without it And I did but uh — then uh — the old imagination started working . . . so I went back to using it. I'm down to sbout half the dosage. But I still get headaches from it . . . Eight participants were familiar with their personal manifestations of angina and could readily recognize when they were experiencing cardiac symptoms. The ninth individual, who experienced the least symptoms and had the greatest activity tolerance, expressed considerable uncertainty about when he was actually experiencing angina. 54 I'm gettlnrj pains now like the doctor says It's angina — and I'm sure part or it is but I don't think all of it is I'm getting a p8in in my right shoulder blade... . . . now you know you've got this problem you start thinking... or you lay there at nights when you [think] oh, what's this doing here? And you think Jesus, is that my heart or something? You start wondering. A decrease in activity tolerance and a general reduction in energy supply were universal experiences for the participants. I'm tired all the time! And I can get up In the morning and... have a good sleep, sit down here, and start watching the old tube having my coffee, you know, and . . . next thing I'm sound asleep again! And uh, I can go visit some friends and I sit down at their place next thing I'm starting to nod away that's not normal for me. . . . if I'm going to cut the grass or anything, I have to stop and sit down, take a nitro tablet and — then after awhile I can start again and do a little bit more and sit down again whereas before I got the whole lawn cut in five minutes. I'm the type that go, go you know. And I can't! I go shopping. Like yesterday I went to the bank. I went to the lawyer. I went and got just a little bit of grocery. I come home and I was so tired. You wouldn't believe as if I'd done a great big day of work And it's not like me, you know... Five participants reported a disruption of their normal sleep patterns. For 8 few participants, sleep patterns were characteristically different than before their illness. For others, patterns of sleep varied on a daily basis. But if it wouldn't be for my heart, I mean usually I have no problem. But now I'm - -many, many nights I hardly sleep - - sometimes three o'clock in the morning. Sometimes I'll wake up [with angina] and it's a problem getting to sleep again. And other times you'll sleep alright. But urn — some nights you can have quite restless nights. And when I go to bed I don't want to go to sleep. It's not a conscious thing. It just — it just happens. But all this means by late afternoon through the evening I'm wore out. And if I have a sleep in the afternoon that makes it worse for the night. — So, you know, your system gets all out of kilt[er]. A majority of the participants expressed displeasure that their illness prevented them from participating in their usual leisure/pleasure activities. We used to go out dancing. I haven't gone out for a whole year.. . . Just slow waltz, that's 55 about the only thing I can do now. That bugs me — 'cause I love going out. I used to like rowing -- lots of stuff like that, well, I can't do that either. Long distance driving... I wouldn't attempt in my present condition... it, it bothers me that I can't do things that I used to do.... I'd go out visiting a lot and I'd go out for lunch and I'd do volunteer work... and I haven't been doing a thing for a whole year! Most of the participants described their usual social functioning as being considerably cut back on account of their illness. ... doesn't help your social life that's all when you ... want to go out with your wife or someone ... and then you find you can't go all of a sudden 'cause you're not feeling good enough at that time. And it's very upsetting to the family as well. They wonder what's going on.... But if you don't feel like going there's no point in going either. — Because — you wouldn't get to be the greatest of company to anybody anyway. [ laughs] ... if urn the family were going out for an evening to the theatre or a meal, I'd probably not, not be able to take the late hours and so I wouldn't go knowing that uh something might happen in the course of the evening see it's better not to go than to become embarrassed with being out... ... you don't want to be around people when you don't feel like socializing. You know you're not a party animal, let's face it, in this type of condition. So make use of the time that where you're active, and then just know your limitations. I think only a fool would go out and, and force the issue and then have people . . . worry about your condition. . . . they [visitors] would have to come by in the evening and I'm a bump on the log, I mean, you know, I'd have to force the issue... I don't feel like socializing because I don't feel goal and I'm not at my best and who the hell wants to uh entertain when you're not at even near your best? I can't even offer 'em ... a drink or a coffee because I'm not supposed to... Well, we just bank all the visiting and all the socializing and everything till hopefully after a successful surgery. The participant who spoke the above words described his illness as a source of personal "embarrassment" for him and stated that he wanted to avoid being on "exhibit" for others. One participant initially cut back substantially on her social activities but later realized this was not an acceptable way for her to live. I started backing off from things that I'd always done, especially large groups of people. I felt almost claustrophobic in it. And urn -- but then I kind of got that straightened away again in my mind — and said "no, you can't live like that." Researcher: When was that? After I found out I needed the surgery. I thought, you know, for a little while... maybe I thought I was sicker than what I was or why was I having the surgery? 56 The participants also described how the illness had altered family functioning. All but one participant's account included details about how the illness had altered relationships with significant others. This was most marked for participants who lived with their significant other(s). One participant's illness had precipitated a separation from his spouse and a resultant loss of companionship. . . . certainly the heart attack is related to my separation I had to look at my life and 1, and I want to make some major changes in my life... when I was in hospital I had, I thought through and, what the hell it got me to the point of having a heart attack? And certainly the stress of the marriage was part of it For all the stuff that [my ex-wife] and I don't see eye to eye on . . . she's been a real good companion to me, you know . . . And maybe this is one of the times I'd rather be with a companion. The majority described how the functioning of the family unit had changed. Not infrequently these remarks described how family members were now protective of them. You see my wife is my shield. She's my bodyguard — and uh, I think she can be very ferocious when it comes to that.... I know she's shielding me a little and I kind of tried to break it down . . . I don't want the family holding back. I want them to talk about their problems the way they have in the past. Still keep me involved in what's happening. Don't shelter me from life. And I think then the natural reaction is to try to shelter you from the real world, you know, kind of put you into a little cocoon and say well, just don't bother with that now. You're not feeling well enough to deal with that. . . I find my son will discuss things with my wife in the kitchen while I'm in the living room 'cause he doesn't want to get me started on something. I don't even know if they do it consciously. I think it's just something that they do without even thinking. . . . my wife says — take it easy. — And... my daughter says, you know, Dad you shouldn't be doing that. . . . it's a change in her [my wife's] life too that I'm home all the time — where she's not used to that. Uh, she'd come and go. . . I think she feels more obligated now that she has to be home — to make sure that I'm okay or uh — make meals . . . it's somewhat restricted for her. Over time, some couples were able to reduce the extent to which the spouse played the "guardian" role. . . . now I notice that when she's trying to withdraw from these activities because of me. So I don't want her to do that. I've got her going . . . out with the ladies again . . . she was gonna discontinue that because she thought that she should be with me all the time. . . . 57 Because really there's nothing that she can do for me or. If I have a relapse I can grab that phone and dial just as fast as she can. But then you don't want to make a person feel like... they're not wanted either. So it's a very fine line in this case and it's hard to deal with.... you're walking a tightrope all the time... Because I don't feel good knowing that she's not doing something that she enjoys doing on account of me .. . And I know she's under the impression that she should be here all the time ... So it's just a big pain in the neck all around. All four participants who were off work on account of their illness discussed their loss of employment. It's just that this is the first time that I've been home constantly. You know like urn I've always worked all my life. I've never even been laid off.... But this being at home -- and especially when you can't do much... Although several losses were incurred as a result of being unemployed, a reduction of finances was the most frequently voiced concern. I'm just about holding my own although I'm losing on the long run because naturally my earning power is a lot greater than my welfare cheques, you know. The main drawback from 8 work point of view is financial I'm concerned financially. — Uh — I can get, a lot of rewards I get from my job I can get that without working... But I miss the gall darn money. I'm also missing being a part of it out there too — a part of it, you know. The participants thus described their illness in terms of its associated losses. A subtheme woven throughout all of these losses was a loss of control. Associated with this was the perception that the Illness had resulted in an abnormal dependency on external resources. But uh — I'm the type that I've never collected UIC, I've never been on welfare, I've worked all my life until this -- little episode. ... you just feel like you're laying down and letting somebody else uh handle the situation . . . And I'm not a follower. So all of a sudden it's just hard to accept that, the fact that somebody else is gonna make decisions for you. Somebody's gonna say that you're not feeling well and something is gonna have to be done for you -- when you always called the shots — on your own behalf and in most instances in a large number of people's behalfs... But there again you're filling out questionnaires. You know, you gotta bear your soul to another organization or to some other person who's gonna make a decision whether you're worthy of it or not, you know. There again, you're losing a little bit of your — uh, independence or something. 58 . . . you have to reach a point in your life where you let other people make decisions for you. And you just have to sit back and, and let it be done for you. But that was very hard for me, very hard to be so dependent on people. And when you think you're getting all these tablets you're thinking well gosh you're going to become addicted to living on tablets — which I don't like the idea of. [laughs] In other words, all participants perceived that they had lost some degree of self-sufficiency and control of their lives and their bodies because of illness. For them, the illness had imposed a loss of normalcy. Threat of Loss. Associated with having coronary artery disease was a belief that one's life was threatened. This was compounded by knowing that the illness had progressed to the point that it required surgical intervention. The participants perceived that they were at risk for losing further cardiac functioning and, in particular, for having a heart attack. The possibility of the ultimate loss, death, was verbalized by most individuals. An appraisal of threat was accentuated by the presence of angina and sometimes by night-time and being alone. Now with this [cardiac illness] it'a a little different [than my diabetes], uh — I feel that if I aggravate that [my heart] too much - - i t could bring the big one on. And it's so scary because my mom died of a heart attack. She was well. Bang! My husband died right beside me during the night. So do you think that doesn't scare me? Especially when you're alone!... But this [my jaw] usually is numb quite a bit — you know my face. They say that's part of having a heart attack. That's what they tell me. But it doesn't make you feel good, [laughs] I tell you, you wonder. You worry then. Well — will I get another big heart attack? I guess a guy's scared to a degree. Like going to bed at night. You don't want to go to bed. 'Cause deep down you have the feeling well, am I gonna wake up in the morning, you know? You don't want to consciously think about it but it's there, you know. If I don't feel anything I don't have a fear of heart attack but even when I'm walking I start getting those pains I get - - it comes on you. You got something there reminding you.. . . . . at this moment I feel well. I don't feel sick and I don't think of death. Uh — or it can go the other way. I can get a little bit of pain and the fear sets i n . . . . And when you start to 59 have that pain, this feellna of — impending doom . .. How many times do I have to die? Because every time that happens I think I'm going to die. Gain. Although loss of normalcy and threat of loss were the predominant and universal themes arising from appraisal of the illness, a weak theme of gain could also be found in the accounts of four of the participants. For a few participants, the presence of illness caused them to see that some changes in their lives could be beneficial. Others expressed gain in relation to leading a healthier lifestyle and helping younger family members to do the same. ... a lot of the stuff I'd been postponing and not just -- just not looking at it or not facing or anything like that. I probably would have continued to do that. The heart attack made me realize, hey, I've gotta start living — instead of existing. ... it's been a good break from my job too. I needed a break. This is a hell of a way to get it but, but I did need a break. So there's some, it's not all negative that's for sure. I wouldn't recommend it as the way to t8ke a break from a job though. I think it's taught a lesson to stop and smell the roses a bit. I say to my daughters, you know ... "quit your smoking and — watch your diet... it can happen to you. Believe me it can." It won't happen to [my granddaughter] because we won't let it happen to her. A positive I suppose is knowing that you have... to keep your weight down — and you have to go slower — and you have to keep on a — a low cholesterol diet... you know I figure I've done it! I figure I've got down to that level now. The illness was thus appraised in terms of loss, threat, and to a much lesser extent, gain. Loss of normalcy was the prevailing appraisal. Threats were appraised in relation to potential illness-related complications. The appraisal of gain was much less predominant. When gains from illness were appraised, these usually centred around an opportunity to make beneficial changes in one's life. Psychological/Emotional Reactions A number of reactions to illness were apparent in the accounts of the participants. Many 60 individuals reacted to their coronary artery disease and the losses it engendered with anger and frustration. Other prevalent feelings included those of fear and anxiety. A sense of vulnerability was frequently expressed. These latter reactions were directly related to the threatening nature of the illness. Anaer/frustration. Most of the participants expressed anger at having the illness and having to endure the associated losses. I'm getting cheated I really think, you know, that I still have a lot to do. I still have a boy to get married, uh -- I want to see my little granddaughter start kindergarten. Urn --I'd like to grow old with [my husband]. — Urn "cause -- unfortunately I really don't feel old yet -- you know. ... you get a little short tempered, you know. And — which isn't a good thing either. You don't mean to be but uh you do get that way. ... certainly there's been a lot of anger in my life since then [the heart attack] — and it's kinda come to the surface ... I don't think it's fair that -- although it's certainly like I, when I look back now I can understand where the hell I've mistreated myself. I'm fairly lucky to be alive. I mistreated my body fairly severely and ... I'm paying for it now. ... that [the realization that I could die] was a bit of a shock to me too and it pissed me off and annoyed me and made me angry... . . . it's like you can't even take responsibility for yourself -- you know and -- uh — [you] get 8ngry... Additionally, they felt frustrated because of their loss of bodily functioning and the related loss of control of their lives. ... it kills me too — if I stand on my feet for too long I'm so exhausted... it's just like a great big shadow comes up, just go bang! Down I go now. I have to lay down. And it bugs me 'cause you know I hate laying down in the daytime. I'm not that type. You know I hate it. ... you get frustrated. -- I think a while ago that they [my family] used to think that I didn't want to do things. And urn -- it wasn't that I didn't want to do them, it was just that I just couldn't. I wasn't up to doing it. ... basically being physically active [before] -- it's, it is frustrating... You really feel frustrated, you know, sitting there watching somebody do that [the 61 housework]. especially at my age. Urn — I just don't think it's fair... I'm sure these are things that you've heard from other people — that they get frustrated — that they get frustrated at the inability to — to do something for yourself, you know. Anger and frustration were therefore common reactions to illness. Fear/anxiety. The threat of an illness-related complication, including death, gave rise to feelings of fear and anxiety. I'm scared of something happening. I'm scared of laying there two o'clock in the morning. I have anxiety attacks now. I don't sleep, you know, when I get like that [scared]. There's no way I'm gonna go to sleep. I'm scared. But like the doctor said, "well if you don't wake up you won't know it." But uh — I don't care it [sicj s t i l l . . . scary, you know. I play pretend -- until it gets dark tonight and then I get scared. I'm okay, you know, through the day I'm fine. It's when those lights go out at night, [tears in eyes] So for the first time in my life -- I have a sleeping pill. I don't need a sleeping pill. I'm not in pain. I take that sleeping pill so that I'll get from that point to daylight -- and if I'm going to die I'll die while I'm asleep. As can be seen from the above excerpts, fear and anxiety were especially prevalent at night-time. Vulnerability. Associated with the perceived threatening nature of the illness was a sense of vulnerability. Most participants expressed that they felt vulnerable to illness-related disasters. ... every time I go across the border I wonder if I should stop and get some insurance this time or — Then I always think well, I'm not that far if anything happens... You know it's the little things like that that -- where before I used to go across there nothing's gonna happen to me! But now, you think twice about uh, going across... It's uh — reasonable to assume that if I go downtown and get overtired I might have an attack and I'll be down there with strangers — and — on and on you go. | don't go out with cash in my purse because I might have an attack out on the street. You know, what an awful way to live! It's, it's urn — it gets worse and worse, you know, because the pain is worse. . .. I don't like driving on the highway in this [rainy] weather just in case -- anything happened to me. And I wouldn't be able to do very much out on the dark highway [at night] with no lights or anything else.... didn't used to bother about going out at any time. But now — I'm more cautious about it. See if you got a flat tire or something else like that... 62 by the time you got that wheel off and another one on — you might pass out beside the damned car or something... ... say you're out — out in the sticks out in a — campground and anything should happen .. . Don't go anywhere. That's the reason I don't wanna go too far away uh -- but uh, it would be a helpless sort of a feeling to be in a campground and — away out in God's country and no doctor around... These quotes demonstrate that the participants were plagued with feelings of vulnerability. Whereas before they felt immune to "something happening," now they felt they must plan ahead to prevent a disaster. Associated with this feeling of vulnerability was a sense of uncertainty. This uncertainty seemed to be related to a loss of trust in their own body. Thus, reactions to illness typically included anger and frustration, fear and anxiety, and vulnerability. Anger and frustration were primarily felt in relation to the illness-inflicted losses. Fear, anxiety, and vulnerability were associated with the threat of an illness-related mishap. Uncertainty played a major role in the presence of these threat-related reactions. Coping with the Illness All participants described how they coped with the losses, threats, and negative emotions that they experienced as a result of illness. Although there were many coping strategies unique to each participant, the accounts indicated that there were common ways of coping with the Illness. The most frequently used coping strategies could be classified into the following major categories: taking action, seeking information, making sense of the illness, and thinking positively. Taking action. Taking action was a broad category of coping which represented a number of strategies used to deal with the illness and the problems generated by it. The taking action strategy was clearly an effort to maintain some control over the illness. One strategy that was used to take action was that of maintaining or achieving healthy 63 lifestyle nrantiras This strategy was used Dy an participants to cope with illness and Its symptoms. Although participants' personal philosophies about the necessity of specific actions varied somewhat, everyone had made some efforts to follow those practices believed to be beneficial to their well-being. The aspects of lifestyle management most frequently discussed were: exercise, diet, smoking, stress, and symptom control. Efforts to regularly exercise by walking were made by all the participants. As one participant stated: "I do the best to keep my health at a reasonable standard now with walking." A few individuals also described the "little ways" that they tried to incorporate more exercise into their lifestyle. I do a lot of little things that I didn't do before... like if I park somewhere... I don't find the stall nearest the door.... And then do a little walking in the store where before I, I wouldn't bother and -- just walk along the mall and -- and kill an hour which is good exercise-wise. Participants frequently stated that they were able to exercise in cold or wet weather by walking in malls. Sometimes medical advice created problems with exercise. For one individual, this was due to differing medical opinions. ... with one doctor wanting me not to do the activities and the other one wanting. That's ... been a bother. Uh -- I don't like to defy anybody. In the end, this participant chose to follow the advice of the doctor who agreed he should do his regular activities in moderation. Another participant discussed his disappointment that his physician would not allow him to join an exercise programme until after surgery. This participant felt that participating in such a programme would have helped him to feel less helpless about his illness. I think that's got a big part in ... recovery from ... any disease — to have to be a part of the recovery process yourself... rather than that feeling of helplessness. I think that's a big killer ... rather than just being passive and laying back and they fixing it like it 64 would have been, all I want to do i s . . . be more active in doing something - - more control . . . then you're a part of i t . . . and the whole psychological side of it is way better too... if there was just that feeling that hey, I'm doing something to, to change this, you know, to get myself in shape and this... but... I need a structure. I need a discipline... After he had been advised by his physician not to participate in an exercise programme, he made up his own regime of daily walks. This helped him to feel that he was doing something to benefit his health while he waited for surgery. All but one participant described how they followed the recommended dietary practices. I've kept on my diet. I'm on both a low calorie and a low cholesterol diet — or no cholesterol diet... I almost don't eat anything cholesterol I can think of.... I dropped salt . . . I dropped milk... I dropped sugar . . . I dropped caffeine like I dropped smoking. Bang! Just cut it right out dropped the meat... beef especially. — And I hope that helps. . . . my eating habits have changed and when I go to uh cafes - - we eat out quite a bit - - and I'll eat more salads and mashed potatoes and — you know cut out the meat. And that hasn't really bothered me that much either. I can't say that's really crimped me too much. Another dietary change made by several participants was a reduction in alcohol consumption. . . . before I had the heart attack I wasn't scared to drink or you know, have a few beer . . . or whatnot, but now I'm feeling that that might be interfering with my medication more and uh, it's not.. . letting the medication do its, its things — and I thought what the hell I'll just quit for awhile... Despite careful efforts to maintain recommended dietary practices, four participants experienced difficulties with weight management. Often a low exercise tolerance compounded this problem. . . . that's been a hard trip too is losing the weight. I think that's another thing that for heart patients there should be, there should be a, a support group where they can work together for losing weight.... I was terribly concerned about it. I thought, oh God, if I don't lose all this weight, you know, my poor heart won't be able to take it. I'm too fat. I mean I've gained 20 pounds.... And of course how can I lose it when you sit down on your fanny all day? . . . I try. I don't eat anything fried. I don't eat anything fat. But you know I'm following the heart programme. But uh I'm not losing any weight. And I don't eat as much 'cause I don't work as much . . . So I'm a little depressed on that too. You know 20 pounds is a lot. You know I had to go and get some fat clothes 'cause nothing fit me. The participant who provided the above quote had discussed her weight problem with her 65 physician. Finding his advice unsuitable to her, she decided to wait until after surgery to deal with her weight problem. Well he [my family doctor] wanted me to join a diet centre or - - you know to lose weight fast - - or Weight Watchers. And I said "no." Me, it affects me mentally - - to think I'm so stupid that I need to pay for them to tell me I lost or I gain. I can't cope with this. . . . So I've been trying to do it on my own but - - I'm not doing very well. . . . But - - how can I lose weight when you're sitting (town all the time?... I thought to hell with it. After I have my surgery I know I'll lose it and then I'll go on a diet and I'll be a bit more active. Almost all the participants had smoked cigarettes at some point in the past. All were presently not smoking or had dramatically cut back. . . . gosh like I've stopped smoking which was a pretty big move. And I was a heavy smoker - - and - - and it wasn't near as difficult... as I expected. Two participants verbalized that total abstinence from smoking was difficult and that they occasionally smoked a cigarette. I used to smoke and I quit smoking. And I gained 20 pounds. That bugged me!.. . So I told the heart surgeon — and he said "well I don't know which one is worse being depressed or smoking. So" he says "well cut it down." So I just do it once in awhile and - - once I start smoking I, I was okay, you know. Deliberate efforts were made by the participants to avoid stressful situations. . . . stress. . . that's what I try to stay away from... . I walk slower - - I try to . . . give myself more time... But uh — slowly and slowly I've learned to calm myself down I don't get upset as easy with other people, you know . . . Now I'm training myself not to be as competitive.. . And I'm trying to keep my temper down — when I play golf. Coping with anginal symptoms was another aspect of lifestyle management. All participants provided descriptions of the ways they coped with these symptoms. I just stop what I'm doing and just try to relax mentally and physically — And then it uh, it abates you know, it goes. . . . I'll sit back and just lean back, close my eyes, try to h8ve pleasant thoughts. — Or I just pick up a magazine... or something like that which really has no message - - n o kind of involvement or anything. It's just a, a neutral subject. And I read something like that and then, then it's fine. — I'd just as scon do that, you know, than start running to the nitro pills every time ~ although it's always there as a backup. 66 I have angina now on a fairly regular basis.... It limits me, you know, that I forget and I run upstairs... but it hasn't limited me from uh — doing most of what I would like to do. . . . I just slow down and uh —and nitro seems to do it. . . . I just have to cut back on my pace. I don't have to sit down along the side of the road or anything. I just slow down a little bit and take the nitro sometimes. — So it hasn't stopped me from going for a walk . . . Equally important to each participant was the way he or she attempted to prevent symptoms from occurring. I get upset quite easily. I always have... But I try and.. . just keep it cool 'cause every time I get... really upset now or that, I can feel it, you know, my chest tightens up and - -the old head feels like it's gonna pop open. - - So I just try and keep it cool and walk away from anything that seems to wanna start bothering me. I learned to control my pace and uh - - I'll take longer rests, you know. I'll, I'll stand around maybe — a little longer than I used to or — I pick the spots where I walk, where I don't have to climb... it comes with experience... I've got more control I think than I did in the past I know my limitations and uh — I guard against any possibility of a mishap. Through maintaining or achieving healthy lifestyle practices, participants attempted to maintain control over their illness and their situation. By preventing and managing symptoms, they felt less controlled by the illness. Efforts to follow healthy practices provided them with a feeling of control in that they sensed they were doing all they could to confront the illness and benefit their physical health. As one participant explained: "I'm gonna take care of my body — you know, I want it to last as long as I can." Another "taking action" strategy that most of the participants used to cope with their illness was that of taking one day at a time and related to that, having a daily routine Individuals who coped by taking one day at a time usually had frequent anginal symptoms and found it difficult to predict how they would feel from one day to the next. One day at a time because I never know how I'm gonna feel. Some days I'm so tired . . . I always just do one day at a time. And if somebody said "well — how 'bout coming over this week?" And I said "it depends on how I feel. I'm not planning on it." "Well if you feel good in the morning phone me," you know. And that's how I work it, you know.... Like today I know I'll be dragging all day — because I didn't sleep well. — So today I don't go anywheres — you know. And that's the way I've been operating. 67 I do like to make plans to do small jobs day by day. No, I don't look down the road to what I'm going to do next week or something. Having a daily routine was another way that the participants coped with their illness. Sometimes this was done to accommodate a loss of energy over the course of the day. I've been trying to get a routine going in the morning — breakfast, go for a walk . . . trying to get back into some rest... . . . but I'm pretty good like — I'm up early in the morning. What I'm trying to do, I try not to develop — uh bad habits that I'm gonna have a hard time breaking away from. Like laying in, in bed.. . . I'm getting up early. Like, my son gets up early in the morning to go to work. — I get up with him. And you know, we have a cup of tea and when he leaves I stay up.. . . By about three o'clock [in the afternoon]... I'm run down.... we hardly ever go anywhere in the evenings. Urn — most of my activities uh ~ are squeezed into a time so when . . . from early morning till maybe two in the afternoon . . . thereabouts I have to lay down and have a sleep. It's uh it's after that, I'm really forcing it make good use of the time while I'm feeling good, you know. — You can't bank your activities. You gotta, you gotta do it while you can ~ and that's, to me, that's early in the morning through to mid-day. And after that I just coast. Taking one day at a time and having a daily routine were two closely related strategies which enabled the participants to cope with their Illness. Together, they represented yet another way of taking action to confront the problems generated by the illness. A third strategy for taking action W8S that of monitoring the illness. Monitoring the illness enabled the participants to be vigilant of signs of deterioration in their illness which might require medical intervention. Another reason for this diligent attention to changes was the awareness that worsening symptoms should be reported in order to give their case a more urgent priority for surgery. One participant described the precise manner with which he monitored his illness. . . . usually what I do is go walk around the block and I can tell because I'm always on the same walk, same grade, and the same speed. So now I notice that my pains come a little faster where I have to stop So I just walk and as I say it's on the same uh — same walk all the time. So that's constant and I know it's uh - - It's not getting any better for sure. By constantly monitoring symptoms, participants were able to appraise their illness as 68 being either stable or unstable. Six participants perceived that their illness was progressively deteriorating with time. But I notice even myself that I get played out a lot quicker now. ... my daily walks... you know, I really have to watch. I shuffle around, you know. I feel like an old man. And that wasn't really happening, not to that degree — not after I was released from, from the ward.... But just not knowing when are we gonna get this job done? And — of course the outcome of it is worrisome as well because the longer you wait — you have the feeling that you're deteriorating — whether I do or not I don't know. I know that I can't do what I could a month ago.... you know that... you're slowly losing ground, deteriorating. You have to! . . . [the] tightness comes faster now — when I'm walking. Like I walk around the block and say — uh, I wouldn't say that there's pains there but certainly tightness and that's the next thing to the pains, you know. Once tightness comes if I don't slow then I get the pain. ... after meals it comes on easier... The other three individuals evaluated that their illness was relatively stable during the wait for surgery. The following quote conveys how one participant evaluated his illness as being stable. Perceiving that there had been no deterioration in his illness provided him with reassurance. In my case having no [a few minor] symptoms -- I don't feel, you know, I don't feel I've uh regressed. Through monitoring their illness, the participants were able to watch for changes which might indicate progression of the disease and a more urgent need for their surgery to be performed. A fourth strategy for taking action was that of seeking and accepting support from others. Most of the participants described how support from others enabled them to cope with their loss of physical strength and endurance. They also mentioned that friends and family were supportive in helping them deal with the psychosocial losses associated with their illness. And my neighbour helps out. I never have to worry about the snow. He, he does the shovelling. -- My neighbour is pretty good that way in anything. -- If I wanted anything heavy, anything heavy done he'll do it. Still I guess we're a lot luckier than most people because we've got two daughters and two sons-in-law — that live ~ quite close to us and a nice neighbour next door so — we're never stuck... oh yes, they're very good at understanding... They know I'm not capable of 69 doing it well they always do It — normally without asking. . .. fortunately I have ... one particular friend who's, who's very good about the whole thing. Like he takes time off — he'll find excuses -- to drag me out of the house.... I know why he's doing it. He'd never say and I'll never say, but like we know. Mixing with people and this kind of stuff really helps... Thus, seeking and accepting support from other people was a strategy which helped the participants to cope with both physical and psychosocial losses associated with their illness. Seeking information. Actively seeking information about cardiac illness and its management was a coping strategy used by half of the participants. The most common sources of information were books and the media. One individual utilized the services of the Heart Foundation. Another attended public seminars on cardiac illness. As I say, I bought this book. And it's its quite a thick book and it, it goes through all the drugs. Urn, it goes into causes of heart problems... And I've read it uh -- pretty well and I've kept a lot in the papers. Plus these pamphlets I, I have [from the Heart Foundation]... This is where I found out about all the pills I take. — Nobody told me just exactly what they were gonna — do. — I learned about the side effects — just in this book I picked up. It's a thick thing. You probably know all about it — prescriptions anyway. — But that's where I learned about any pills. Just uh reading it in the paper, picking it up in a magazine or something — or over the air, cardiologists talking or so and so. — So any of it, if it comes to anything to do with the heart, you know, of course now I've got — I read it. I read it right through to see what's what. — This book that I have, it's something about — your heart and this and that. I think I picked it up at a - - at a flea market somewhere. So it's dated back a bit. I think it's uh 1972. But it's close enough to give you a — a good insight... The individuals who coped by seeking information stated they did so to increase their feelings of control. The acquired information could be acted upon in ways perceived to be beneficial to the management of their illness. Additionally, it helped them to be prepared for potential occurrences. I think you feel part, more part of the process too, more control of it, you know. Like 70 that's why I want this information I think is that I feel more control rather than ... the unknown, it's really more scary -- most of the time snyways. I like to know what's gonna, gonna come up. Maybe I'm curious or nosey but if anything like that comes up I'll find out about it, get a book or go to the library and find out all about it. Four participants raised questions about their illness. Two of these individuals had been actively seeking information on their own while waiting for surgery; the other two individuals gave no indication that they had been seeking Information about their Illness. Rather, they seemed to have questions on their mind for which they had not tried to get answers. These latter individuals seemed to wait for such information to come to them rather than to seek it out themselves. The following excerpts illustrate some of the questions raised by them. ... they've never really explained to me — too much other than where those vessels being blocked that it stops the, the oxygen getting to the heart. — Well, they never really explained any, anything further than that. — Uh, what makes it stop or — or what makes the pains when it's that short of oxygen? Uh, I've never figured it out myself and they've never explained nothing to me. I'd like to know more — uh — in the dieting versus activities, you know, and everything e l s e — [medications] how they function... what they do and if I miss [what I should do]. The individual who made these last remarks repeatedly asked the researcher questions about illness-related topics (e.g. diet, proper administration of nitroglycerine tablets, and the significance of pulse rate) during both interviews with him. It could be that although he did not actively make an effort to seek information, when an information source was readily available to him, he used it. This participant stated that he expected the researcher to share her knowledge with him even though he realized that the purpose of the interview was to obtain a description of his experience. Simple explanations were given as required. One participant perceived that educational services were lacking and expressed disappointment that information about available services was not supplied by health care professionals. 71 ... like this seminar. I think there should he more or that kind of stuff, hey? ... If there was more of that out there — maybe there is out there — I haven't heard about i t . . . . I'm disappointed that I wouldn't have found out [about the seminar] except that I just had the radio on that day ... or if there is a support group.... If this was available ... I would certainly go and find out more about it. I'd like to know what the hell is this clinic setup [that I heard about at a seminar], you know, because that sounds like an interesting thing that if I was in like part of it — going into a regular routine or something, you knew where the hell you were standing more — than just out in the cold and — yeah, I wanna find out some information on that and I think that would be a hell of a good thing. Thus, some participants actively sought information about illness while they waited for surgery. It seemed that these individuals typically coped with situations by seeking information. For them, acquiring information was beneficial because it enhanced feelings of control. A few other participants, however, had questions but had not sought information to answer them. As was indicated, one of these individuals used the interview situation to ask questions. Making sense of the illness. The six youngest participants in the study attempted to cope with their illness by trying to make sense of it. It seemed that they tried to make sense of the illness by analyzing what might have caused it, why it had deteriorated to its current state, and what might have prevented ft. I just wondered about what the hell prevention I would have done. What could I have done? Other than — like I don't know if I would have changed my diet. Smoking would have been the big thing... ... about three weeks later [after my hunting trip] I had a heart attack right at home in my own bedroom — for absolutely no reason.... So it was something that was due to happen I imagine — sometime. But uh ... I really don't cl8ss myself as a heart attack candidate. I'm not overweight. I quit drinking ~ it must be 15 years or more, I haven't hardly touched the stuff. I don't smoke.... So well the W8y I see it is, it has to be hereditary.... never ate heavy foods around here or greasy ... I'm physically active. I'm not a couch potato So I don't think I'm a heart attack candidate. I just have this rotten heart disease. I probably would have had a good heart had we known I 72 had the disease ~ but unfortunately I had a heart attack and there W8s damage done.... I thought that the eight years that I put in [since then] was sort of a getting better process. I don't know where I ever got that idea in my head that I could get better from this disease - -if I didn't eat the eggs and if i walked — and if I tried to watch my diet — and if I gave up my beloved cigarettes . . . So things have changed — but too late, too late for me. And I think this is another thing that, you know —I wished I could have had more help with eight years ago was -.- the diet end of it. Urn — I know my family physician always says to me "oh, I wished I'd got you to quit smoking sooner." I'm sure that it aggravated the situation. But I believe that the situation was there — would have been there and maybe not as bad - -as soon - - but the cholesterol problem was there. And the smoking didn't certainly enhance it. But it uh — I don't think it was the sole cause. The participant who experienced the fewest symptoms and had the highest tolerance for physical activity spent the most time analyzing his illness and its need for surgery. Indeed, a large part of his account focused on his attempts to make sense of his illness and integrate it into his self-concept. It appeared that he was constantly trying to come to terms with the reality of the illness. The first thing I... think of all the time is - - why don't I have a symptom other than that - - that one symptom? I refereed quite a few ladies' [hockey] games — and I was behind, I W83 late all the time. . . . So that's when I just said "well I guess I can't hack it no more." But I didn't relate it to this until — you know, get the word from the doctor . . . you've got heart disease. The word just, you know — hits you like a hammer. I said to myself, Jesus, is there something wrong? - - Why can I do this [ski this well when I need CABG surgery]? I don't see how it's possible . . . if the pump is damaged, how can I do what I'm doing and still not have - - heart attacks or pains or whatever? Sometimes perticipants tried to understand what might be happening to their coronary artery disease during the waiting period. . . . now I could be having some other little, little symptoms or something that — could be making things worse or could be making things better. And as far as he [the surgeon] knows, I've got three vessels that are blocked. You see I might have four now — because there's nobody been testing me or, or nothing. A few participants analyzed the illness to try to understand what it might mean for their 73 future lives. Because when you talk about change in lifestyle the things that you might have to give up that you enjoy doing, that's what really plays on your mind. And that's what really bothers you. And now you're having second thoughts Travelling's one of the things that we enjoy immensely -- and... planned on doing more and more in the future.... And now there is doubt whether we're gonna be able to do all those things. So now you look back and say well — why... why was I head down and rear end up all those years? And this is what it comes down to. It's easy to become bitter. I'm a little scared about the length of life.... my surgeon there said that it [surgery] was gonna extend my life by five or seven years. And I walked out afterwards and I couldn't understand what the hell he meant.. . whether I'm gonna live from now for five years or — where, how the hell did he come up with a figure like that?... But I am concerned ~ uh I wouldn't mind living to 80 or something like that.... I went through a deal in my mind now 8bout investing and — retirement plans and... I'm wondering if there's any point of — I'm kind of envious of people that aren't having to think about whether [laughs] there's any point in it or not. The strategy of making sense of the Illness by analyzing it frequently resulted in a belief that a delay in diagnosis was partly responsible for the current state of the illness. Why ... didn't I have an angiogram shortly after I came out of the hospital -- instead of three months or four months later? ... sometimes I think a lot of the, the blame could be laid right on the doctors— I should have been in there and had an appointment long before that to find out 'cause they knew practically from day one that they were gonna have to operate. So instead of me walking around like a time bomb, popping pills every two to four hours -- why didn't they make an appointment right away and get on with it? Excuse there, story I got, they said "well — thought we'd try and loosen it up with medication." I've been really slow and tired for the last two years or so. And my doctor he went through some tests. I don't know why the hell he didn't catch it which kind of ticks me off a little... You know when I had the chest pains I had to insist on an angio. They didn't want to do that either. I said "well, you know, why can't-"? They went along with it. But — here I am not knowing what I'm talking about — or what the problem is but I felt well ~ God if — if I have these pains, there's a reason for pains and if there's, "if we can find out" I said well — "can't we — I get in? Okay, fine, we'll do that" but it wasn't his idea... Making sense of the illness was therefore a coping strategy used to try to understand the illness in terms of its present and future significance. It appeared that this process was undertaken in an effort to establish some control over the situation and to work through accepting the reality of the illness. 74 Thinking positively. Thinking positively was a coping strategy used to some extent by all participants. It seemed to help them feel better ebout their illness situation. There were several ways that the thinking positively strategy was used. Most often, individuals thought positively by finding reasons why they could feel fortunate. This frequently involved comparing their situation with that of a fictitious other. I myself personally have been very lucky. I've had a large family of eight children. I urn, had one surgery in my life 26 years ago. I still have my tonsils. I just have this rotten heart disease. ... it could be worse. With other diseases I'm sure, arthritis or whatever ... you're like less fortunate. Like my heart Is not damaged. Of course I'm lucky. I can feel, I can really feel for people that are in worse straits than me because I can walk — I can go up and down stairs comfortably. I've already lived two lives. I mean considering my age. I mean I've been around. — I've been all over the world. I've travelled. I, I grew up awful fast. I went through a world war. I've been through a revolution and I've done things that most people don't even read about. So — I've lived you know. So -- if I die -- really I think I'm about a hundred years old now. — I don't think I missed very much... At other times, looking beyond the event of surgery helped them to feel less negative about their current losses. By looking to the future, participants were able to view their current situation as a temporary one. Well never mind, next year at this time I hope I'll be — go, go, again! [laughs] — Hoping. I know that after the surgery I am not going to keep that weight on. 'Cause I'm gonna go swimming and [get help] from the dietitian if I can... ... once you have it [surgery] you may never have to come back again, you know, because the progress coming off in this big a field... But I think now with uh what they know and the foods they have and — and the drugs that they either have or will have that uh -- that it may not ever happen again [that my illness will require surgery] -- You know I'm trying to talk nice to myself. 75 Some participants used positive thinking, to reduce the threat of their having a myocardial infarction. I don't feel as if in the near future... I would have a heart attack— I figure that if I can do the things I can do — umpire ball — do football games... bike... why would I have a heart attack -- if I'm keeping on my diet and keeping on my low cholesterol? Thinking positively, therefore, was a commonly used strategy which helped the participants to feel less negative about their illness. The act of thinking positively also appeared to generate hope in that the participants could believe that things would be better in the future. To summarize, the illness facet of the experience of waiting for CABG surgery was appraised as a loss of normalcy. Loss of control was a theme woven through all of the other appraised losses. The risks of having a heart attack or dying were universally recognized. Major reactions to illness included: anger and frustration, fear and anxiety, and vulnerebility. A major factor which contributed to these reactions was uncertainty. A range of coping strategies was used to deal with the losses and threats created by the illness. Usually, coping entailed strategies for taking action. The strategy of positive thinking was also universally used. Other major strategies included seeking information and making sense of the illness. In using these coping strategies, participants attempted to gain control over their illness and the problems engendered by It. Having completed the description of the illness facet, the presentation will now proceed to discuss the surgery facet. What meaning did CABG surgery have for the participants? How did they feel about it and how did they cope with the prospect of it? The Surgery Facet Meaning of the Surgery The accounts of the participants revealed that appraisal of surgery was an ongoing process throughout the wait. There was considerable variation in the frequency and intensity of 76 surgery-related thoughts both within and between individuals. Most participants had recurring thoughts of surgery with episodic increases in perceptions of threat. A few others thought little about the upcoming surgery. One perticipant felt this was because the date of surgery seemed so ambiguous and distant that the reality of it had not yet fully registered. Other participants said they thought little about surgery because there was no point in dwelling on it. I suppose it's on your mind most of the time but it uh -- but to get really concerned about it, not often. You know, I think it depends on if you're tired or something. You get thinking or — at night when you go to bed and get thinking about it — and you get a little upset... Maybe can't sleep or something. Not often ~ you know, once a month or every two weeks. Like it's still something so, too far away — for, for the reality really... I think my whole attitude's gonna change when it gets closer. Like right now ... I don't spend a great deal of time thinking about it. — Uh -- so I don't think it's scary — right now. No doubt that I'm gonna be.... I don't know what kind of a reaction I'll get -- or I'll have. I haven't got a clue what I've coming. Not much point in thinking about it, is there? [laughs] It's one of those things that's uh more or less like an accomplished fact. Regardless of how frequently individuals thought about their upcoming CABG surgery, all had made two distinctly different appraisals of it. On the one hand, CABG surgery was associated with a host of potential threats. Conversely, it represented an opportunity for substantial gain. Threat of loss. Surgery was appraised as threatening in two ways. Firstly, there were anticipated threats associated with the actual experience of surgery. Having to endure pain and discomfort during hospitalization and the home recovery period was the most frequently voiced threat in this category. ... I think how much pain is it gonna be, you know? ... the pain where I'm going to have it, is It life-threatening — or Is It Just pain? It will take a long time to get over it — you know. It will be three months and it will hurt for a year but... I'm accepting it. It doesn't bother me that much... 77 One individual perceived that the chest scar would be threatening to his body image. Cosmetically too, you know, I'm not too crazy over what I've seen, [laughs] .. . [Someone] showed me his scar — on the football field, [laughs] I wasn't too happy to see that but I mean I know it's only — it's only six months old so — I'm sure after a year it'll disappear — or maybe two years. Secondly, and even more signficant, were the threats associated with the uncertain outcome of the surgery. These threats were enhanced by the fact that the surgery was being performed on the heart. As one participant stated: "then there's the natural fear with somebody mucking about with my heart." All participants acknowledged that complications, including death, could occur during the operation or recovery from it. But there's always that 1 --25?... like they say that 58 or more could have heart attacks during surgery — urn complications and others which they don't really feel is great complications and I suppose a few deaths. I suppose I must have been in a way indirectly be afraid of it [surgery] or I wouldn't be too concerned about this religious side of it — making peace and this kind of stuff. Well [in my dream] they give you the needle that puts you out and that's it! Have I, you know, have I not said my good-byes, you know? Am I gonna do that beforehand? I've thought of that a couple of times and said "no way." I'm going in and out. The participants perceived that complications could result in losses of physical and/or mental functioning. This, in turn, was sometimes appraised as a threat to future employment. This friend of mine he just had this bypass done... a week ago he was up here... he looked good. He moved very slowly. — So you start wondering — you mean I'm gonna be pussyfooting around like that the rest of my life after that or... what? ... if I'm gonna have to be walkin' around on crutches — or wheelchair ... if I'm in that position [when it's time to be discharged from hospital] then I will make up my mind what I'm gonna do.... I'll wait and see — because uh — who knows? Why start making a bunch of plans now? I may never ever get out of there! I don't know how much effect it's gonna have on my future whether I'll be working or jobless... If something did happen in that room — you know, and I couldn't work — and I had to depend on this [Long Term Disability] -- man I'm screwed, really. I have to think ... that I might never be able to go back and do it [work at same job] again. Now the likelihood of that is hopefully very minute but... the possibility's there. So that's 78 another thing you have to deal with. You know, you're not trying to be morbid about it. But you gotta weigh all the possibilities 8nd it is one of the possibilities. And then there's the other part of it. I'm a fairly Intelligent woman and I just, you know ~ hope that I'm gonna come out of there with as much brains as I go in there with. Several participants were especially concerned about the possibility of losing leg functioning. I've had people that I know ... they've said that after they've had their bypass their vessels and that are all good but. . . where they took the vessels out of their leg they're having problems. Well I've got bad knees anyway — so, and a lot of times I wonder will I... walk after this? ... so sometimes makes me wonder should I go ahead with It, take a chance in walking again, or just stay the way I am, or ... what? ... the worst fear I have is losing the use of my leg. You know I use my legs for everything. ... Of course heart too naturally [laughs] but I don't figure there's any problem there. The three individuals who lived alone perceived a threat not mentioned by the other participants. All three expressed concern about how they would manage at home when discharged from the hospital following surgery. I don't know how the hell I'm gonna operate once I have the surgery. That's... a concern to me — right now And I don't know what the hell kind of shape I'm in at that time... Surgery was thus appraised as a threatening prospect. It represented both expected and potential threats of loss and harm. Associated with this appraisal of threat was a theme of uncertainty. Uncertainty was a significant variable in the appraisal of surgery. There was uncertainty about what actually would be experienced during the event of having the surgery. Additionally, there was uncertainty surrounding the short and long term outcomes of the surgery. Ooportunitv for gain. An opposite appraisal of surgery as an opportunity for gain was equally prevalent in the accounts of the participants. Indeed, the participants generally spoke more about perceived gains than perceived threats. It is probable that it was more comfortable for them to discuss the gains. Additionally, focusing on the gains may actually have been a way that they were coping with the prospect of surgery. The six participants whose cardiac illness had been diagnosed 79 within the previous year always made appraisals of gain in relation to re-establishing normalcy. It's [surgery] something that has to be done and ~ let's get it done and get it over with and try to re-establish a normal — reasonably normal existence. That's all I'm hoping for. The three individuals who had longstanding coronary artery disease expressed their anticipated gains in terms of an improvement over their current functioning rather than a return to the life they had known before the illness W8S diagnosed. For all participants, though, surgery was appraised as an opportunity to regain some or all of the elements of normal life that were perceived to have been lost through illness. Improved bodily functioning, particularly in relation to energy supply and symptom relief, was a universally expected gain. Associated with this was the anticipation of a decreased dependency on medications. ... what I'm looking to is to get back to my activity level and just to feel normal again --you know, to be able to walk fast and ride my bike and --you know, just generally everyday activities which you're accustomed to. Oh, I'm not looking to any kind of -- a fountain of youth or anything like that. No, no. I have no silly illusions about it. I hope that it uh — I'm gonna have a whole bunch more energy. I'm just draggin" and I have for a couple of years. And I hope that that's the biggest change.... Like I'd like to live a normal life — and this kind of thing and — at least what I'd think was normal anyway. It's just to know that I can go out — and do a full job, whatever it is, umpiring, my job at work or whatever, that I can come home and I don't feel pooped or beat I've talked to two people that have had the operation and have had the same symptoms that I have... [and they say] all the pains in your legs go. I expect that to happen too Energy level... recovery time -- so I can do those things I want, you know, and everything. Uh — the only thing I cen say after the surgery is that — feel better, get away from these pills. That's about my one big thing. And uh -- not having to worry about -- chest pains. The nonretired participants who were on sick leave from work looked to surgery ss an opportunity to regain employment. I'm just hoping that uh — it turns out same as I've heard everybody else's turned out they're all uh, okay. — So I'm just hoping mine's gonna be the same thing. And that I can carry on with a normal, uh, life and go back to work or whatever. 80 The participants also expected that following, surgery they would be able to re-engage in their usual social and leisure activities. I just hope that I'm gonna ... feel really good and I can get goin' again, [laughs] -- You know I love dancing and I love going out and uh, I want to do a lot of volunteer work... And I want to get involved in more. But I haven't been involved for a whole year.... So this is what I'm anxious to get going. I think it will be a relief to think that you can travel around without any immediate urn thought of — problems cropping up at any time. — So it'll take sort of certain amount of stress off your mind. Because whether you're worried or not about it you're still — it's still in the background of your mind, the thought. This last excerpt illustrates some of the expected psychological benefits of surgery. A successful surgery meant that they would no longer have to live with constant uncertainty and a sense of vulnerability to potential cardiac problems. Other participants also mentioned psychological gains anticipated from surgery. One person described hope for an improved mood while another expressed a belief that surgery would restore a feeling of control of his life. Associated with this was an expected elevation of self-esteem. And this grouchiness — Christ I hope that goes. ... once the operation is behind you, you have some control of your life again.... You can speed up your recovery by doing the right things. You can almost be equal with the rest of the world again — especially if everything was successful... I know I'll have the feel that ... I can kind of walk with my head held high again... One participant, who had an eight year history of cardiac illness and a strong family history of early death, expressed her expectations for gain with considerably more reservation than the other participants. My expectations are to get the surgery over with — recover and hopefully go a few years without the disease returning - - i n the force that it has. I know . . . that there's no promise of eliminating the pills. Hopefully I'll be able to cut down at least if nothing else. ... now I've got like 15 years ahead of me that could possibly be painfree or darn near. I know that there's no guarantees that I'll have a hundred percent painfree body. But it's 81 gotta be better than what I'm going through and uh ~ what I've been through... But I kind of have a feeling that after I have my surgery, and God willing, that I think that I will have some productive years again. The participants held different appraisals of surgery in terms of what it meant for life expectancy. I don't expect it to uh — Increase my life expectancy. Uh, I don't believe that now If I get this done I'm gonna live 10 years longer than I would have if I didn't have the heart attack. I don't look at that. I may because of this procedure have a better chance, but I know it's not meant to give us extra years as it is — more quality... And uh -- the length of my life. I figure if I get this done and I stay on my diet... I haven't even reached middle age then. The individual who spoke the words immediately above, viewed his coronary artery disease as analogous to a plumbing problem which could be corrected by surgery. I'm under the impression that my heart as a muscle -- is excellent -- that all I have is a couple of lines — that have got some rust in them — and they have to be replaced. That to me is putting it in a nutshell... It's like having the right side [of my heart] retread and you're back to a 20 year old lines again... The theme of gain was thus associated with each participant's appraisal of surgery. Uncertainty was just as significant to the appraisal of gain as it was to the appraisal of threat. Although the participants held high expectations for gain, their expectations were almost always linked with "hope" or the conditional conjunction of "if." In short, there was no guarantee that surgery would be unconditionally successful. CABG surgery was therefore appraised as simultaneously representing a prospect of gain and a threat of loss. One participant's remarks illustrate aspects of this dual appraisal. I'm not gonna say that I'm gonna go into the hospital dancing and full of joy -- goody, goody I'm going to have an operation ... and enjoy it. But urn, if I've got to endure a certain amount of urn -- time for an operation to the improvement of my health a short time later --well so be it. 82 Psvcholonlral /Fmnttnnm Rfiartlnns Participants reacted in different ways to the initial news that CABG surgery would be required. For some participants, this news came fairly unexpectedly. They typically described their response as one of shock. One participant remarked: "Well I felt very upset." Another stated: I guess [I reacted with] a little bit of shock to an extent because urn I had more or less been led to believe that If It was In the early stages that the urn — balloon thing would urn work -- and then they told me that in my case that uh it wouldn"t work as it was a complete blockage. So it was going to be surgery.... Well when you had it in the background that that was possibly what it was going to be a matter of... two or three days at the most in the hospital and then it comes around to open heart surgery, there's a considerable difference isn't there? Other participants described the news as depressing. i think I kind of went into a little bit of a depressed state uh thinking about i t . . . ... it was like taking a downer when after the stress test I found out that, yes, I will have to go through surgery and — I had to deal with it in my own mind and, uh, I really wasn't prepared to get involved in a lot of discussion about it. I knew it had to be done so why — why dwell on it? Another individual described the news as generating both relief and fear. I felt almost — relieved that I knew ~ exactly where I was going at that point. It was kind of a nice feeling to know that they had mate a decision finally after eight years of pain.... Relieved, but frightened -- of the unknown. -- Urn - you know, we know our heart sustains us. -- And uh — we don't want just anybody uh foiling around with it. A few others described their initial emotional reactions as being minor because there had been a series of gradual steps leading up to the decision for surgery. It confirmed what I thought right along.... [my doctor] said this [CABO surgery] would be the ultimate — or the way down the road somewhere. Like there was a lot of alternatives or something between now and that time, kind of thing. And, and soon as he was talking like that well I, maybe I'm a pessimist or something I just — I knew that... I'm gonna be getting this God damn bypass surgery. .. Somehow I knew that I was gonna end up on that table when the doctor finally told me that it was to be bypass surgery, like it was not as big of a deal... it wasn't a big emotional trip The initial shock of having a heart attack was a... little more traumatic than uh — the need for the surgery. 83 ... they did a lot of tests... they put that monitor on me and I took the stress [test] and all the rest of it. So everything came — you know, not just bang. And then I went for the angioplasty and then into this. — So no, I can't say there was any surprises . . . And of course, I suppose ... you say, "Why me?" you know. "How come it's me?" But it is and — there's nothing you can do to change that. ~ So you go from there. These excerpts of initial reactions to the news of needing CABO surgery convey that there was no one representative or universal response. Reactions varied among the participants and included feelings of: shock, depression, and relief combined with fear. Other participants described their reactions as minor because they had already anticipated that surgery would be necessary. As the waiting time continued, two major reactions to the prospect of surgery prevailed. The participants' accounts illustrated that they felt a certain amount of fear and anxiety in relation to the upcoming surgery. Equally as strong were their feelings of ambivalence. Fear/anxietv. Fear and anxiety were common reactions to the prospect of CABO surgery. There was considerable variation in the intensity with which participants described their fear and anxiety. Most participants perceived that their fear was increasing and would continue to increase as the date for surgery became more imminent. Others perceived that fear increased as a result of having too much time to think about the threats of surgery while waiting. You know that something comes on TV now and I'm like this — I can't even look at it. If somebody told me that a year ago -- I wouldn't have believed it. I can't even stand to see these pretend operations or anything. And it's all make-believe. But it scares the devil out of me. I don't think that I'm under the tension of — like I don't think I really faced the fact that I'm going in for this thing yet, you know. — I don't think it's denial or anything. I just think it's a question of time, you know. Like the fear isn't there yet, although I'm starting to get a little concerned about it obviously it's, you know, more on my mind than it was. . . . it's starting to change now. — I don't think that — my anxiety level's not very high yet. But like I just suspect that it's gonna be fairly high. ... the more you think about it the scarier it gets. Lots of times if you have to do something drastic and you do it — when the occasion arises -- that's one thing. But when you sit back and you're given so much time and you think about it, then you're analyzing it too much. 84 And you start seeing all kinds of horrible things there that you never thought of In the past. Thus, fear and anxiety were common emotional reactions to the prospect of surgery and the threats it represented. Ambivalence. The second major reaction to the prospect of surgery during the waiting period was that of ambivalence. The simultaneous holding of the two conflicting appraisals of threat and gain placed participants in a state of ambivalence toward surgery. The accounts exemplified a theme of ambivalence in two ways. In one way, there was ambivalence about the need for CABG surgery. Doubt was always connected with this form of ambivalence. One participant's statements were particularly illustrative. ... because you have so much time to think about it, you know, a lot of doubts will creep in ~ whether you really want it done anymore. Because -- okay, now I've existed for three months, okay, with uh minimal medication, with a cutback of activities. -- Uh, so the thoughts will creep in now, but do I want do go through that and take the chance of a possible mishap, getting scarred for life, uh possibly the surgery not being successful, having to have it redone, uh, you know -- accidents, whatever. There's several types of doubts that come in, you know — and slowly you start sort of questioning the necessity of it all. Is it, you might think well ~ if I have managed it this far without it -- maybe I feel better a year from now. — You know bloody well you're not gonna feel any better... Ambivalence about the necessity of surgery was also manifested by the participants' contemplation of alternatives to it. But sometimes you wonder if there is a way to solve it other than bypass.... to me, it's... the same as you get a blocked sewer line. — You don't... always take that section of the sewer line out and put new ones in — because it's blocked. You get a roto-rooter in there or something and clean it out -- and sometimes I wonder if that couldn't be the case with ... these vessels. For some participants, ambivalence about the need for surgery heightened as the waiting period continual. ... it kind of makes you wonder, you know, you're sitting this length of time — and if there was something really wrong with me ~ why aren't they in there doing it instead of having me sit? 85 A few other participants reported that they became less ambivalent about their need for surgery as time passed. And uh -- I guess I thought [at first] that, you know, well I'm breathing and I'm walking and I'm talking. -- That might be better than not knowing what's going to happen [with surgery]. But I don't feel that way now. I feel that -- I have to get this surgery. I have to get it over with and I have to get on with my life... Ambivalence was often related to the ongoing process of appraising the illness. The presence or absence of symptoms played a significant role In this respect. When one felt well, there tended to be more doubt about the need for surgery. And then you start thinking oh gees, maybe I'm getting better. And then you kind of push your luck. And then you go up the stairs a little faster than you normally do. And then you get up there and you think, oh Christ! It puts you back into reality. ... But when I was down here feeling fine you feel that well gees, maybe I am getting better. And then all of a sudden you find out in a short time that you're not feeling better. You're feeling worse — and then this up and down, it goes on all the time. The second way that ambivalence existed for the participants was in relation to their desire to proceed with the operation. ... you want to get it over with ... you also dread that day coming. You know what I mean? You want to get in. You just hope that they'd phone you now and say "get in" and that's it. Then there's no backing off, you know. But this waiting you don't know and — although you're wanting to get in you also feel -- Jesus I -- it's not a nice thing to look forward to. And now here I find myself that phone a ringing, I'm hoping it is and I'm hoping it isn't.... it's like being pregnant in a way. I kind of think I should pack a bag — but I haven't really felt like packing one yet so it isn't time yet. You know it's uh — all these sort of things, urn. . . . It really can, like I say, be so stressful. Not all participants discussed this form of ambivalence. Those who did, however, clearly stated that the desire to "get on" with surgery was stronger than that to delay it. Therefore, ambivalence occurred in relation to the perceived necessity of surgery and the desire to undergo the experience. Although the intensity and nature of ambivalence varied among the participants and fluctuated over time throughout the weiting period, ambivalence presented as a major reaction to the prospect of surgery. 86 Reactions to the need for suroery. therefore, changed over time. Initially there was a variety of reactions such as shock, feelings of depression, relief, and fear. Later on in the waiting period, reactions of fear, anxiety, and ambivalence were dominant. Time usually had the effect of intensifying the fear and either decreasing or increasing the ambivalence. Coping with the Prospect of Suroerv Each participant had a repertoire of strategies for coping with the prospect of surgery. Some motes of coping were fundamental to all participants. All of the coping strategies were aimed at strengthening the appraisal of gain or reducing the appraisal of threat. In this way, efforts were made to reduce the ambivalence felt toward surgery. Seeking information. Seeking information was a coping strategy employed by all the participants. However, the type of information sought and the sources from which it was sought varied considerably. Most often, seeking information was used to investigate alternatives to surgery, the operative procedure, the experience of undergoing surgery, the risks involved, and the reputation of the surgeon. Six of the participants sought information about alternatives to surgery. It seemed that they were trying to confirm that there was no viable alternative to surgery. One participant described this phenomenon as an effort to find the "least line of resistance." . . . always try to find the least line of resistance, [laughs] So nine times out of ten it isn't there that least line of resistance. You have to go the direct route, [laughs] I don't think anybody really wants surgery if they can possibly avoid it. The sources of information about alternatives to surgery included: acquaintances, media reports, literature, and medical practitioners. The prevalence of this type of information in the media made it readily accessible. Sometimes options to surgery were discussed with the physician. In other cases, participants independently made their own evaluations of the 87 suitability of alternative therapies. The treatment most frequently investigated was that of chelation. Now l*ve had different people telling me... about... a lot of people going to [the States] for a, a treatment for the same thing and they just use . . . intravenous - - and they clear all those . . . vessels out with this intravenous. — So I took a copy of this to [my cardiologist] and he said "oh, it might work . . . but it's not a proven fact. It's not medically proven." I said "well there's a man right there that, uh, as far as he's concerned it's proven, you know, that it's good." He said, "well... I being your doctor . . . I wouldn't recommend it." I've read a little bit of It [chelation] . . . I watched one programme on TY on I t . . . I mentioned it to my doctor. I asked him about it and he ~ wasn't gonna do any - - fairly unbiased except that he said just don't ask him for the prescription, but that if I wanted to spend two thousand dollars or something, go ahead. I never considered it. I also checked into . . . chelation therapy. And there's controversy about that.... I got a booklet on it and what they're doing but... of course you have to go to your general doctor and meet certain criteria before you can qualify. — And going over there and I thought well urn since I have one plugged artery I can't see that's going to help me. So uh — they hear of them on the TV saying yeah, one guy said he had pains and now he can walk ten miles — with this treatment. - - But I got thinking that if something like that is true - - or so good, why isn't it just that. . . everyone's on it? And I think some of these people if they took sugar pills they'd say, yes, they feel better, you know. Because I can't see the government spending, you know 25,000 dollars, whatever it is for open heart surgery - - when they can give you a few intravenouses and no hospitalization at all, you know... Most of the participants had been informed at the outset that angioplasty was not appropriate for treating their coronary artery disease. As has been previously mentioned, one participant had had angioplasty unsuccessfully attempted. Three participants, one of whom already had been advised that angioplasty was unsuitable, wondered about the possibility of angioplasty. Apparently there is a technique called the angioblast [sjcj. A friend of mine . . . said they just stuck a tube in him [in his leg]... and they actually felt the blood rushing to his leg. . . . So why can't something like that be done up here? . . . the other thing you can have is angioplast [sic]. But he said he didn't figure it would last - - that I'd have to be back in a few years to have it done again or, or a bypass. I didn't know anything about it I've been trying to read up on it and everything, you know. Just what is right? Some participants had also considered the option of laser treatment. The newness of the 88 therapy and lack of information about it made it seem an unfeasible alternative. And now I start seeing things on TV about the laser ... Now -- is it possible I can get that done? You know, so that's bothering me too. Why go through 8n operation if that... can be done and uh -- it can fix you up? ... It's just that right now, you know -- I'd like to find out how they can hurry up and get that laser system out here!... If the doctor said to me . . . "let's wait till that laser comes out here. I think it would work with you." I think I would in a minute. ... I would rather go without a dangerous operation -- even though I don't consider it dangerous anymore for myself anyways. If the laser would work — if it's a better treatment and a safer treatment, why not go for it? But I understand down in Toronto... they burned out the — the uh plaque [with a laser]. But I haven't heard anything since and that, you know. It was a great deal. The guy says he feels fine. Maybe he's dead! Maybe that's why we haven't heard anything... . That's one promise on the horizon. But uh... I wouldn't want to be the first guy to have it done but uh ... I wouldn't mind going in on that one — if, if you had an opportunity. Using the words of one of the participants, laser therapy seemed to be the "real McCoy;" however, the participants realized that although it represented a promise for the future it was not a viable option for their current illness. In addition to these three alternative treatments, naturopathy was investigated by one participant. Two other participants regularly used vitamin E with the hope that it would be beneficial. The seeking information strategy was also used to investigate the reputation of their surgeon. The opinion of both lay individuals and health care professionals was sought. Nearly all participants asked the researcher what she knew about their surgeon. All I know is I'm on the waiting list under [a certain surgeon]. You heard of him?. . . What's he like? He probably has a pretty good reputation as a surgeon though, eh? One of the best? The most universal way that participants used the seeking information strategy was to determine the success of the operation from the example and testimony of "veteran" CABO surgery patients. ... they [the people I talk to] don't go into a lot of detail except that when they got off work, how long they were in [hospital] and how they're manoeuvring [after discharge], what problems they're having -- none -- and how they're feeling now and stuff like that which 89 is encouraging I think it helps to talk to people I told you about my friend that went in for four [bypass grafts] ... I phoned him a couple of times since and . . . he's been hacking wood and everything it seems to be an improvement for his life anyway... ... [the surgeon] said there's one chance in a hundred of dying during the surgery -- and, and the only people that I've talked to -- no one has mentioned the, the death -- except for this buddy of mine so — so that's probably pretty close to a... true reflection on i t . . . . I probably talked to 99 people — that were successes. And... his [my buddy's] wife is the one that wasn't. So it's probably fairly close to reality. So -- if it was a few more or something maybe I'd be a little more concerned or something... The above quotes illustrate how acquired Information provided the participants with encouragement to proceed with their own operation. Participants often sought information about the surgical experience. Lay and professional people, literature, and the media were frequent sources of this information. ... different things I've just read on my own... it's an older book I read. I read all about it there. The -- some parts where -- it's a mammary gland they use uh -- then uh veins from the legs.-- But as far as uh -- what the surgery's all about I've pretty, I pretty well know — just — what the score, what the — what it's gonna entail.... on TV I think I saw it where they open you up and a man had his hand on the heart and so forth and — Researcher: And how does that affect you? Doesn't affect me a bit. . . doesn't turn me sick or anything. It doesn't bother me. . . . Gees, I would want to know ahead of time. I would like to see it all. I have read a little. And uh — sort of prepared myself. Researcher: Where did you get your literature? I got it from the library. Researcher: That was on the surgery itself? Mm hmm. And on heart disease. And — not too much. I haven't gone goofy. — Urn — just what I wanted to know. [I found out] I actually go onto a system — while they work on my heart — or the heart lung. — So I'm kind of, sorta got that into my head. That was something that at first kind of confused me was how they could actually do all this — and the heart not stop like, you know. — I found after reading how they did this and uh — so that made me feel 8 little better. I did get some information from the Health Society [Heart Foundation] ... I got a few pamphlets there.... and then I found this book ... I bought it at a bookstore.... they go through the whole thing from cholesterol and diets and — exercise, smoking and — and angiograms and angioplasties and bypasses . . . what to expect when you have open heart surgery ~ things like that. Researcher: How helpful did you find the book? Well it takes the doubt that you didn't know — urn — I find that some of the doctors you go to don't tell you too much. ... I find there's a lack of communication with doctors and 90 patients. And I'm sure a lot or other people do too.. .. generally. yeah, there's a lack or communication, well not communication, it's departing knowledge. — They seem to be secretive about a lot of stuff that -- I figure... they should be told. I'm generalizing here. ... a friend of mine... he's a surgeon... was supposed to come up yesterday... And I was gonna talk to him about i t . . . I can't remember what... kind of surgeon he is or this, not anything to do with the heart anyway. — But he must have some idea about what's going on anyway. It's way after I talked to the surgeon that I found out they take the veins out of your leg! You see I found that out on my own like -- this friend of mine... he was the one that told he has has more trouble with his leg now than — with his heart. I said "what do you mean with your leg?" He said, "oh yeah,... they take the veins out of your leg." — And I was under the impression that there's... some type of — of this plastic tube or something that is — in there replacing this little section or whatever... Most of the participants indicated that basic information about the surgical experience obtained early in the waiting period was or would be helpful. Often this information had been provided by the cardiologist and/or surgeon. I'd like to have a little bit of information now I think, early. I don't think I want to have all the, — but I ... would like some on more specific stuff on just — what part of ... my heart they're gonna work on... I'd like the doctor to go over it again — a little more detail on that maybe. I'd kinda like to take a look at a picture and know that, what the hell they're gonna be doing.... kind of the routine — you know ... I'd like to know a little more about what's going on. ... my doctor was good at describing what the hell W8S going on drawing diagrams that I couldn't understand and this kind of stuff but — they were explaining it. [My surgeon] was good. Uh — he had a plastic heart out there and was explaining this kind of stuff. In fact [my surgeon] was excellent, he spent an hour — listening and explaining what the risks were and this kind of stuff ... and why he was recommending it. And uh I thought all that was informative and good. Uh — my own personal doctor he give [sic] me some books to read... I think a basic knowledge is fine... but I don't believe in overdoing it. ... To get it [all the information about surgery] when I was in there [when I had my heart attack] and not go through the actual process of the corrective surgery — and coming home with all that information I think it would have just played on my mind that much more. Maybe I'm just protecting myself. The above excerpt suggests why some participants did not wish to receive a lot of information at the outset of their wait. Although a basic information seemed helpful, a lot of detailed information 91 was feared because it might act as a source of worry for them while they waited. Many participants also stated that the information they most wanted was that pertaining to the recovery process. There's the fact of how long after the surgery I'm likely to be in hospital. And urn - - how long will the convalescent period then supposed to be after I get out and what my limitations are going to be - - during that period of convalescence. They're the points of more interest to me than uh - - anything else. And of course, I prefer to eat the right things that uh - - is going to help the recovery — than just to ad lib it 8nd eat any damn thing that's something that may be to the detriment of — a speedy recovery. It could be scary [to know what one will experience with surgery]. It might not be. I don't know but it could be nice to know. To me it's how long will I be sick, you know? And how fast will I recover from this? Beyond these two generalizations regarding the benefits of basic information early in the wait and information about the recovery process, needs for information were unique for each participant. As indicated in earlier excerpts, some participants actively sought information about what the operative procedure entailed. Others, however, adamantly stated that they did not want or need to know much about the procedure. I feel there's no need for me to know what... they're gonna do — or how they're gonna do it — because he's doing the cutting and sawing. — I'm gonna be out there colder than a cucumber and if he wants to cut here I can't tell him "hey, you can't cut there.". . . It's interesting really and uh, like how they're gonna do it or that I got no control over it. I don't want to know how they'll break my chest and I know they're gonna do that I don't really want to know all the fine Details. I want to know what they expect of me when I come out of it uh, breathing or coughing or — doing whatever uh — and I know that will come . . . I have a fair knowledge now so I don't want to go into the very minor detail. I know what — basically what they're gonna do.... But I'm not really concerned about every little fine thing that they're gonna do. Because I have no control over [that] anyway and I'm going to be out like a light... I really don't care how the guy's gonna attach that artery and how he's gonna do the bypass and how he's going to do this, how many stitches he's gonna put in. That, that I find rather gory and in bad taste... It was interesting that two participants who stated they did not want to know about the operative procedure simultaneously indicated that they had several questions about it. 92 . . . they're oonna cut a piece outta here, piece outta there. How the hell do they keep those two together... do they just mend together, grow together, sew them together or . . . what? Now I don't know if they... cut the old part right out and take it right out or If they leave it and just bypass it. When I think of bypass I think you're bypassing something it stays in. Does it stay in? . . . Is it nonfunctional? Why do they leave it in? . . . I always wondered about ribs. . . . How do they get in there? Do they cut the ribs, break the ribs or . . . And what is the longest part of the healing? Is it the — the ribs or the skin or the heart or — or does it all heal pretty well the same? What the participants seemed to convey was a need to have some control over incoming information. The participants differed according to what information they perceived to be helpful, when they wished to obtain it, and the way they felt it should be delivered. With regard to this last point, two of the participants reported that written material was more effective than audiovisual. One man reported that visual information was very disturbing for him. Although he owned a videotape about the operative procedure, he stated he could not bear to watch it until after his surgery. Thus, the strategy of seeking information was widely used to cope with the prospect of surgery. It enabled participants to anticipate what they would experience. It also validated the success of the operation which had the effect of instilling hope. Although informational needs varied somewhat, the participants generally valued basic information about the experience and, in particular, information about the recovery process. This latter Information seemed valued because it provided specific direction for action. Preparing for Surgery. A second major category of strategies used to cope with the upcoming surgery was that of preparing for surgery. Subsumed under this broad category of coping were the strategies of visualizing, putting affairs in order, preparing physically, and seeking/accepting support. About half of the participants used the strategy of visualizing to imagine what the surgical experience would be like for them. 93 . .. well I've been in what you call intensive care.... I pretty well know the procedures there but, but being a different thing altogether I'm not too sure just what you go through ... I imagine this would be — intensive care over here will be something along the same line. . . This friend of mine when I went up to see him one time — there he was — by himself there and one nurse... almost alongside him there. — So I think I've pretty well — got it down pat. I mean — [I] keep trying to visualize it saying, well, they say, you know, that urn, you go three days in intensive care and — I'll have a very sore chest... I had a rotten [surgery] 26 years ago and everybody was getting up and going home and I was still there a month later. — So obviously operations and I don't get along very good, [laughs] So I'm thinking to myself, oh boy!... surgery — is a scary thing for me.... I sure hope I react better this time than I did that time.... I have this awful thing about intravenouses. Urn — in fact I get cold when I think about them... . Uh — you just can't imagine the horror I go through when you're trying to put needles in me. .. . But I'm hoping that all that happens when I'm, when I'm out — so they'll have all that junk done before I have to know it's being done. I sit here a lot of times here myself, uh, thinking, wondering, how much of a — you know incision they're gonna make on my leg, and... how big a — you know — where do they cut you in your chest? ... so if they cut you in the chest they've got to cut through your ribs and the whole... thing. So you sit back and wonder gees, how long will I be in the hospital? How long will I, you know, be tied up after this? The above excerpts illustrate how the variables of knowledge and past experience affected the ability to use the coping strategy of visualizing. When knowledge about the operative procedure and hospitalization was deficient, it was difficult to visualize what the experience would entail. Past experience could be facilitating or harmful in terms of the mental images it provoked. Previous experience with injections, intravenouses, and anesthesia were the most frequently cited aspects of prior hospitalization which generated unpleasant mental images. In many cases, then, the ability to use the visualizing strategy was limited by a lack of information to use it productively or past experiences which gave rise to negative images. About half of the participants had coped or made plans to cope with the prospect of surgery by putting affairs in order. You know since I found out about this -- I have remade my will. I have done a lot of things. And believe me it's been very depressing. I shouldn't have to be thinking about those things. I should be thinking positive thoughts. I'm going to have surgery. I'm gonna get well. I'm 94 going to come home. I shouldn't De worrying aDout - - who's gonna get the crystal. — But you see I have time to think about that. And people say, "Well, it's always good to get your affairs in order." It isn't always good to get your affairs in order. That's scary you know. I've organized everything... my banking's all done and my bills are all paid . . . Of course my will has been done for a long time. I've got everything ready in case I don't make it but I'm sure I will — but you never know, you know. — So everything's done and ready. Now I'm looking at more, well, if I should go [to see my lawyer] and I tried to uh get things yeah more lined up uh — so it would be easier on the wife if, you know, something happens. I'm more conscious of it anyway. For the most part, when special arrangements had not been made to organize affairs during the waiting period, this was not because such matters had not been considered. Rather, it was because these individuals deemed that their affairs already were in order. Another strategy used to make preparations for surgery was that of preparing physically. Most of the participants believed that their healthy lifestyle practices were preparing them to be as fit as possible for surgery. In addition, one participant performed specific exercises which she believed would facilitate the recovery process. I'm trying to keep in as good physical shape as I possibly can. . . . I'm keeping my weight down, trying not to put weight on. Uh — I do calisthetics as much as I can — and do as much exercise. Every morning I exercise around here — not very strenuous... try to do my walks. And uh — basically that's all I can do. [I] have quit smoking and I walk more. I walk around the block and I don't overdo it. . . just to get myself in better shape for surgery.... like they tell you to do a lot of walking and this kind of stuff to cure you I know I'm not going to be cured until I get the surgery so I do try... I've lost a little bit of weight. I've changed my eating habits altogether. I've been doing a lot of exercise with my arms. Nobody told me to. I just figured if I strengthened this part of me it's gotta be better. ~ Urn — I re8d that they want you do a lot of coughing — and I'm a terrible person to cough. So I've been practising coughing — holding myself down here— What else have I been doing? Well walking whenever we can - - and urn - - like I said doing lots of upper torso exercises. Uh, nothing strenuous, nothing that I can't handle — usually when I'm laying in bed — and the breathing exercises and that type of thing if it helps, if in the ultimate end it's an advantage, fine. Symptoms often limited the extent to which this coping strategy could be used. Nonetheless, most participants expressed an eagerness to do whatever possible to physically prepare 95 themselves for surgery. The three participants who lived alone engaged in the strategy of seeking and/or accepting support to deal with the threat of being alone after discharge from hospital. One participant had made arrangements to stay with someone following surgery while the other two had worked out options for staying with family or friends. I've got two or three places I could go. I've even had offers of people coming staying with me. — So uh — whether I come home here and have somebody come up here or what, uh — I'll leave that — go [until after the operation]... Having arrangements in place for the time of discharge helped these participants to feel prepared for surgery. It decreased the threat of how they would manage in the early discharge period following surgery. Thinking positively. The third and final category of coping was that of thinking positively. A number of strategies were utilized to think positively about the upcoming surgery including: emphasizing the positive, hoping, making positive comparisons, rationalizing, and trusting. One way that the thinking positively strategy was used by all of the participants was through emphasizing the positive information that they had gathered about the success of CABG surgery. ... one lad... had it. He wouldn't go two blocks to get a package of cigarettes without using his car. He now runs marathons... their wives say "We can't keep up with them because after they have it done they have so much energy"... .. . you know I've read a lot about it. I've bought a health book and uh everything looks in your favour if you're a gambler uh, you know, they talk about uh complications very little, near 5SB. The book is written by doctors snd it's put out by the Health Society so I have to assume that it's pretty accurate. And they give you st8ts which, uh, is in your favour. And then you look at the success of so many people that's had it, it could be worse I was talking to the doctor. He said probably the only change you'll see might, you won't be lifting fridges and stuff like that anymore. Well I don't want to anyways. So it doesn't bother me too much. 96 Positive information was also beneficial because it enabled the participants to engage m the strategy of hoping. Through hearing and seeing of the success of others' CABG surgery, the participants were able to hope that their surgery would also have a successful outcome. This was a prevalent way of coping. Indeed, each participant's account contained the word "hope" many times. Although hope was related to several aspects of the surgical experience, it most frequently was used in conjunction with the outcome. A friend of mine was just in ... for a bypass and uh, [when] I saw him a week ago he said, "oh I had a little problem. They took me in, did a bypass right away and uh, I feel great now." So hopefully uh, hopefully mine will be the same way. ... from what I've heard -- urn, it appears to be quite successful So I'm crossing my fingers and hoping that it's successful with me. One participant related that her faith in God and the power of prayer helped her to hope. Hopefully we'll [I'll] make it — but I, I pray for my family more than anything right at this point that I do make it. 'Cause everybody's hopes are so high — uh, maybe higher than mine are. Making positive comparisons was another way that the participants used the thinking positively strategy to cope with the prospect of surgery. The prevailing attitude was that if others could survive the ordeal of surgery so could they. Making comparisons also aided many of them to perceive that they had personal advantages over others and that these advantages would promote a successful surgery. I'm going in and out. That's It. — I'm going In with this perspective that If normally a guy gets up in three days I'll probably be up in two.... if a man had it done... the last week of June and he was 66 years of age and he played golf in August... good Lord I'm twice the shape that man is . . . When you hear things like that — what's there to it? Let's get on with it. Let's get going with it. .. . you see a friend of mine had just had heart surgery — just about a year or so, maybe two years ago and — and uh — the way he come [sic] out of it was just uh — top notch! So that was kind of uh -- as far as I was concerned there was really nothing to -- to fret about. — And he's been plugging away like nobody's business and — so seeing the way he has acted ... made me feel better about i t . . . . I've spoken to others that have known others -- like they've said so and so, how they were before and how they are now and — 97 completely different people. — Well hearing all this — i haven't heard anything — down at all. -- Everything's always up so — it made me feel better as far as I was concerned. And none of my parents ever had the advantage I've had [of having surgery] or my brothers or my sister. Now I have one brother left out of six children and no parent. We have all died of heart disease I guess deep in my heart I know that if I - - get another few years 1 will be very, very lucky... I'm very lucky in a sense I guess. I have low blood pressure. ... which is sort of a plus I would think.... in the sense that they don't worry about stroke ... I think I have the advantage of age — and that makes an awful big difference. And uh -- I don't think that, you know, anybody can take that away from me. That, that's sort of been planted in my mind that there's safety in this idea that I'm younger. — It might be a false one but it's mine, [laughs] So I hold onto that and my belief that if you do everything you possibly [can] do, that's all you can do. In order to discount information about unsuccessful cases of surgery, most of the participants made comparisons between such cases and their own. In doing so, they were able to formulate reasons why those cases were different from theirs. This enabled them to anticipate a successful surgery despite having knowledge of unsuccessful outcomes. A friend of mine whose wife died — having heart surgery... didn't upset me particularly. Researcher: Why do you think that was? ... she was asthmatic too or something like this so there was some, some effect on it. He had one open heart and he's in now for a second. And I suppose he didn't look after himself — maybe, I don't know. I think he still smoked No doubt because he didn't look after himself or maybe he was not informed properly of what to do... ... we had a friend that had gone through it. Unfortunately he's dead.... he got 12 years. And he got 12 good years but he had lots of different problems than I do. One participant was unable to make positive comparisons in this manner because he had firsthand knowledge of friends who had suffered major complications in the recovery process following surgery. . . . unfortunately -- that's another reason why I really don't like talking to people too much about it -- 'cause I lost two co-workers -- and it's not through heart surgery -- but strokes after the surgery -- blood clots ... Both of them came out of it with a very bad speech impediment. One was so bad that he didn't recognize anybody. He didn't know himself. He didn't know his wife and that. And that's another scary thought One of them ... had another stroke and he died. — They found him dead in his apartment... So uh — when you have an example like that staring you in the face, well, you just kind of wonder. ... You only have to think about it once... and it's there forever. It's etched in your mind 98 ... well u happened to [my friends] — well — there's no reason why u couldn't happen to me. Neither one of these two men were slouches. Although this participant also knew of successful cases of surgery he still found it difficult to think positively about the outcome of his surgery. ... one of our guys with our own company had surgery and he's vacationing in Hawaii right now... But it's not the good things you think about because you don't have to think about the good things. They'll take care of themselves. Some participants generated positive thoughts by comparing the upcoming hospitalization with positive experiences from past hospitalizations. I don't think there's gonna be anything too much different from what I'm anticipating. .. . Everybody's [health care providers] been good [in the past]. Nice to talk to. They talk to you nice. Treat you nice. So there's nothing, nothing bad to say about it. [I] have found the nurses in the hospital, in ICU or — you know, in the cardiology end of it — to be really sympathetic. And uh — for never having gone through it themselves --personally — they handle it so wonderfully well -- that you feel almost as if they know exactly what you're going through. So I'm assuming that this is the way it's going to be — that I will have this kind of nurses. The preceding quote was made by one of the participants during her first interview. Between that interview and the following one, she had a nine day stay in hospital during which time she felt she received poor care. After that experience she found it difficult to think positively about the care she would receive during her upcoming hospitalization for surgery. I'm hoping that that's a different level that I'm on [when I have surgery] and that I will never experience that 8gain.... And when I have the surgery I would hope — but I've been told so many times how good they are. Uh, I gotta believe that they'll take excellent care of me. And like I say this was just one of those freaky things that happens, you know.... I'm sure I'm gonna see some of those nurses. I mean it's all one area, you know... but I feel so really, really badly — because they treated me so good for so long — that why did they, why now, you know? This is a bad enough time for me. This woman's statements illustrate how her ability to cope by thinking positively was changed by her recent experience. Previously, she assumed that she would receive the good care she had been provided in the past; now she had to hope that she would. 99 Another way that the thinking positively strategy was implemented was through rationalizing. Most of the participants used the strategy of rationalizing to cope with the perceived threats associated with CABG surgery. Like you read about — percentages uh — death or so forth, so forth. But also what, you stand that when you go out for a walk — to cross the street or something. Mind you, you can walk out tomorrow and get run over by a truck too... And then you have to think to yourself, well, they've taken a large group of people maybe from 40 to 85 [years of age] and those with 85 might have had 2 or 3 previous heart attacks so -- you have to assume again that they're probably the ones that don't make it --so you know at least in that grey range. So I look at my age... And then I have to say, yeah, my chances are actually pretty good. . . . that there's no risk involved. The only risk would be — something happening in the operating room but I just can't see that happening. I just can't. I haven't heard about it happening, not in this area anyways and not by this doctor or his associates. Through rationalizing, then, the potential risks of surgery were made to seem small or insignificant. The final strategy that was employed to generate positive thoughts was that of trusting. Although many participants expressed doubt about their need for surgery at some point during their wait, they also tried to have confidence in the medical advice and care they received. All participants conveyed a trust in the expertise of their surgeon. I gotta get it done and ... I'm sure uh [my surgeon] isn't gonna screw up in me . . . He's gonna do the best he can do and uh that's all I can hope for.... I come to the conclusion that uh he knows wh8t he's, he's doing and he's sure as hell not gonna cut anymore than he has to. — So uh, I just sort of drift off to sleep and — uh I don't worry about it anymore. I trust both the doctors [my family doctor and cardiologist].. .. And I definitely trust [my surgeon]. I mean, the man just talking with him ... I just have that feeling the man knows what he's doing — and everything. ... I believe in [my surgeon]. -- He puts it across very, very well and he's made me feel as if the . . . 1058, you know, chance of something going wrong is down to probably 158 -- with my physical condition. And, you know, having faith in him helps too. These people and they're supposed to be heart specialists — and I've always took a man's uh credentials without question, okay?... I'm giving him all the benefit of the doubt. So if the 100 man said I needed it done I take it at face value and I assume, and I hope rightly so -- this individual knows what he's talking about.... I like to think that these people are competent to know. ... I place myself in somebody's capable hands. That's why he's there. I can't do anything. And let's just hope he knows what he's doing you've gotta trust somebody... and this is one time when I'm gonna have to trust somebody- Totally helpless in the situation... Maybe I'm naive or something, in a lot of ways that, like I've kind of — the buggers must know what the hell they're doing. I've got complete confidence in [my cardiologist].... I've asked him once or twice and I've seen these things urn — In the paper about different things and uh he's always given me a good sensible answer to them that if it was there and if it was possible it would be done. Having trust in the doctors, then, was a universally employed strategy which helped to generate positive thoughts about the medical care they were being given and that which would be given when they had their surgery. The thinking positively strategy was thus implemented in numerous ways. In all cases, however, it was geared toward weakening the appraised threats associated with surgery and/or strengthening the perception of gain. The accounts of the participants thus conveyed that they spent considerable time and energy in coping with the upcoming surgery. Coping was geared toward making physical and psychological preparations for surgery. The predominant strategies included: seeking information, preparing for surgery, and thinking positively. Seemingly contradictory strategies were often used by the same individual. For example, an individual would express great trust in the advice that surgery was required while simultaneously would seek information about alternatives. The most prevalently used strategies were those which helped the participants to focus on the gain expected from surgery. Regardless of how often participants appraised and reappraised the meaning of their prospective surgery and how aggressively they pursued the possibility of alternative therapies, the prevailing theme of their accounts was that there was no option, that surgery was the last 101 resort. ... the doctors have tried everything. They've tried all the medication... He [cardiologist] says "we do everything in our power before we even do this" [CABG surgery] So they've tried me on everything. Now it's not getting any better. So then this is why .. . they said I needed the operation.... Me it's almost every day [that I have symptoms]. ... And I've been like that. . . [for many months] ... So it's no picnic. So I knew eventually I'd have to have it done. I knew that I'd have to have it done, that I could not come out of it. Then he told me to rest and don't do anything heavy 8nd don't vacuum, don't wash windows. I've listened and I'm not any better. I mean all the diets and everything else it's not gonna solve the problem. It's there -- and I know it's serious because the man told me it was serious. He, he wouldn't use the balloon because the, the degree of risk was so high that he just wouldn't do i t . . . . So uh, I know I'm facing a reasonably serious situation, a damned serious, because it's my life that I'm .. . dealing with... when the man says there's only one way of doing it, when he shows me on a videotape where the artery's completely blocked, two of them are blocked and one is two-thirds blocked -- urn there's not too much room for argument. We [my family] have all died of heart disease. So I know where I'm going. I know if I don't have the surgery I will die -- and it will be sooner than later with[out] the surgery I went and saw him [the surgeon] and we asked him very forthright. I said "now — if I have the operation and I get five years more life, and if I don't have the operation and I still have the pain but I get — five years of life ~ which way do I go?" And he said if I didn't have the operation my life wouldn't be worth zip. ... I take I understand the maximum heart medication. Uh I think that's about too where it's at too is there's no place else for me to go. In the end, then, there was no alternative but to accept the need for surgery. As one participant stated: "I've resigned myself that I'm going to have it done." This, then, concludes the description of the surgery facet of the experience of waiting for CABG surgery. To review, surgery was characterized by the dual appraisals of threat and gain. The appraisal of threat was mainly linked to the potential risks of the procedure and the expected discomforts inherent in undergoing it. Gain was primarily associated with regaining lost elements of normalcy engendered by the illness. Uncertainty significantly influenced the appraisal process in that there were unknowns surrounding both the experience of surgery and its outcome. Common reactions to the prospect of surgery were fear, anxiety, and ambivalence. A variety of coping strategies were employed to reduce the prospect of threat and increase that of 102 gain. These entailed seeking information, preparing for surgery, and thinking positively. The Wait Facet Having completed descriptions of the illness and surgery facets of the experience of waiting for CABO surgery, the presentation will now proceed with a description of the third facet, that is, the wait. Beginning the Wait As was indicated at the outset of this chapter, participants had been waiting 11 weeks to 11 1/2 months for surgery. This represented the amount of time that had elapsed since the decision was made to proceed with surgery. Although the date of the decision to have surgery officially marked the beginning of the wait, some participants perceived that their wait had begun prior to that time. This was true of the participants whose cardiac illness had been diagnosed within the past year. These individuals typically marked the start of the wait as coinciding with their heart attack or with the first investigation of their illness. For them, the wait was perceived to be equivalent to the length of time that had elapsed since loss of their normalcy through illness. No participant had been given a definite timeframe for the duration of his or her wait. Five participants had been told an estimated number of months that they would probably wait. This information had been provided at the time of the interview with the surgeon. Four individuals had been given no estimate whatsoever. I think he [the surgeon] said three to four months. He said somewhere in that timeframe. — So ... I was gearing up to three or four months. Whether it's gonna happen or not, I don't know. But like I say, if it goes beyond the four months I'm gonna be on the phone and -- doing a lot of hollering because .. . this month has been one year -- that I had mine [Ml] A couple of times I brought up the uh subject on the waiting, you know, any idea? He [the surgeon] just flatly refused to give any indication whether it's gonna be two weeks or a month or three months down the road. He would not commit himself to any degree. Now — I kinda hsd a feeling that him being in the position that he is in — should have been able to, you know, give me some idea.... he had an answer for it. He didn't want to build up my hopes and this and then I'm kinda looking to a deadline and if it doesn't happen . . . Then it would be a, a great letdown. And I mean I can agree with him on that. So I have no idea 103 when... Regardless of whether or not they had been given an estimated date, all participants felt uncertain about the length of their wait. Usually when an estimate had been given, it was also indicated that it was not a guaranteed date, that the actual date of surgery could be later or earlier than the estimated one. This meant that the participants waited, as one individual remarked, in a state of "limbo." Meaning of the Wait Inasmuch as surgery was appraised as an opportunity to regain elements of normalcy lost through illness, the wait typically was perceived as an unnecessary period of time delaying the acquisition of this potential gain. Additionally, because loss was appraised to be the major consequence of illness, the wait was thus viewed as a time when further loss and harm must be endured. Loss. The wait was commonly appraised in terms of loss. As one participant stated: "Well this is what I feel, it's a big loss." Most of the losses associated with illness were appraised to continue, if not intensify, by having to wait for surgery. The purpose here is not to reiterate all of those losses. Loss of finances, however, warrants mention because it was repeatedly discussed by the participants who were absent from work. [I may have to] get rid of all this stuff [if I have to be on Long Term Disability for very long] — and go get a room somewhere for 200 [dollars] a month instead of paying 400. But — Christ I've got space to walk around here. What the hell would I be like if I was in just a one room place? Well the waiting period for sure — like there, there's been — financial effects, eh? 1,1 went over the budget yesterday and I mean I just I don't know how the hell I'm gonna live — I haven't got a clue -- without the work. Uh -- so that's certainly created some stress... The participant who was employed while waiting also raised financial concerns. And when the waiting... would start to harm me monetarily, eh? I mean my umpiring ball is extra money. It's not needed but when you have it all the time you do something with it. Then it's needed, you know. 104 One participant appraised financial losses more generally, in terms of losses for society. One thing that kind of bothers you when you think of it's a matter of dollars and cents. So they put you off work for six months and, and what they're gonna pay you in lost time ~ exceeds the cost of the operation, you know. Where if they could get you in and out — in normal six weeks or whatever, uh they're probably better off — because you know — you'd be back into work and productive again — whereas this way... they pay as much as what it cost to get the operation done — by not doing anything. Thus, the wait created financial concerns for all of the the nonretired participants. In addition to accentuating losses associated with illness, the wait engendered losses of its own. A loss perceived to some degree by all the participants W8s the loss of freedom. Participants described how they felt "tied down" and obliged to st8y near the city. They felt they were not free to plan their lives as they desired. So you can't, you know, base the present now on the same ways that you . . . did in the past. And I've always been used to my freedom. But — I don't dare take a chance on going — going anywhere now — because I might be called in. Just uh ~ just the, kind of a tied down feeling, that's all This, I don't feel as though I'm free at a l l . . . You can't go anywhere . . . I think I'd no sooner get there and bang the phone [would ring]. I'm beck on the plane and.. . if they said to me — six months you're in. Bang! That's it. No sooner, no later but you're done in six months. Then you could now gear to say that's the date I'm going in and I can gear for it. And I could arrange to do this or that... then you can work around it. But this way, no, you just don't know. You don't know. Be in tomorrow, not likely, but a month from now or two weeks from now... you know what I mean, you're not really free to do what you want to do or should be doing. Associated with this perception of loss of freedom was a loss of leisure activities. Specifically, seven participants mentioned how they h8d lost out on vacations because of the wait. Although hesitancy to travel was usually partly associated with illness, it was always related to the uncertainty about when one would be called in for surgery. Well it's not a possibility this year... . We'd have our trip all planned by now. And this year it's not gonna happen. And that's another thing you feel like — uh, you lost out. You know, I mean you did. I mean ~ it's something that we look forward to and uh all of a sudden we can't do it. You can't make it up. You can't say well . . . if everything goes well, next year we'll take a more lengthy trip. That's not the same. Even if you could travel or go on a holiday, I can't do that. We had planned on going to Arizona ~ and uh — we had to cancel that because I may get called here. 105 For some participants, appraisal of a loss of freedom was related to feeling tied down to their home during the day. These individuals feared that if they left the house they might miss the telephone call advising them to be admitted for surgery. They believed that they might then miss their "turn" and someone else would be called in their stead. One participant felt tied down because of information given by the surgeon's receptionist. This participant had been informed that telephone calls regarding admission dates for surgery were always made on Fridays and Mondays. And you stay home and, and hope they're gonna call you. Like she told me they phoned Fridays and Mondays. So if I go out Friday I make darned sure I don't even go out at all on Monday. Plus you don't really like to go away from the phone between certain hours of the day. You're sort of strung up on a phone. And I once said that I'd never be dependable on a, I'd never depend on a phone as long as I lived again. One participant, who initially felt restricted in this way, was given a telephone answering service by his wife. Afterwards, they were able to leave the house without worrying. Another participant gave up constantly staying home after a few months of waiting had elapsed. Two individuals, however, stayed home even more as the waiting period continued because their surgeon's receptionists had indicated they soon would be called in. Those participants who did not feel obliged to stay home during the day to wait for "the call" expressed trust that they would be repeatedly called until they were reached. I mean when the phone call is going to come is, that's irrelevant. I'm not going to sit here and pine and wait for the phone to ring. When it does it will. If I'm not here they'll phone again. One participant had been told by his surgeon that, if necessary, repeated telephone calls would be made to reach him and that if he could not be reached by telephone, a letter would be sent. This information enabled the participant to feel free to leave his home during the day. To most participants, therefore, the wait represented a loss of freedom. Almost all participants stated that the wait imposed travel restrictions. They perceived that they were not free to leave the urban area because they might be called in for surgery. Some participants also 106 described loss of freedom in relation to feeling tied down on a daily basis. For these individuals, activities were curtailed on a daily basis because they feared missing the call to come in for surgery. Loss of freedom thus W8S associated with a feeling of being tied down. For most of the participants, the wait was perceived to be a loss of valuable time These individuals conveyed that life was, to some extent, on hold. An urgent need to have the surgery in order to proceed with life was expressed. Now I'm just sitting! So — I'd like to see it over with and, uh, get on with my life, get back to work or — whatever.... I can't uh, go on much longer like this uh, knowing that I've gotta have an operation or forget about the operation and just sit here like a vegetable. I've gotta be doing something. And the only way I can get to be doing something is get this operation over ~ and then I can proceed. — Now if the surgery fails — it's not because we didn't try. But when he told me six [months]— and, and no assurance on that! Well six months is a long time to sit and wait for something. You know the winter has come and gone and uh --summer's gonna be here and you'll be very restricted then. So it's not just the six months but it's the two months after that that you're recuperating and probably another four months on there that you have to be darn careful. So you're looking at a whole year of your life that before you're really back to normal again You feel like it's part of a wasted life — this waiting.... you can't work -- you can't work in the home ... you can't even holiday. You can't utilize that time efficiently for anything I feel my, this period of my life is ... pretty wasted.... it's just that your time is going and you're standing on the spot, you know. We want time in our lives but we want good time. And we don't want this kind of time. This to me is like urn — a little like it must be being in prison — waiting for the time of release. Thus, many participants perceived that the wait represented time which could not be used productively or enjoyably. They had lost quality time and in its place been given less meaningful, if not agonizing, time. Moreover, it seemed that there was too much of this kind of time. This situation created somewhat of a paradox. On the one hand, the wait represented lost time; on the other, it represented too much time. This concept of having too much time will be returned to later in the presentation. Another loss associated with the wait was a loss of dignity. The majority of the participants perceived that their sense of self-worth was lowered by having to wait for surgery. Statements were frequently made that expressed the viewpoint that they should not have been 107 required to wait. Because they had been responsible citizens, they perceived that they deserved something better from the health care system. But now I'm sorta considered a second rate citizen — because — I'm waiting to get into the hospital. Well, that's the, that's the way it makes me feel that the government thinks about us. We're nobodies. We're, we're second class — because we're down.... I started on my own when I was 13 years of age. — And I've never been on Unemployment Insurance. I've never been on welfare. I'm under the impression that I deserve something better ... I have uh never abused the system.... I've always — uh gave more than what I, I took.... Well I've always done a day's work plus ten percent of a day's pay, and it's not because somebody made me do it. It's just the way it i s . . . . I don't think I owe the system anything. I never sponged off it. I've not been a parasite in any shape or form So I kinda, you know, you get the feeling that you deserve something better. — But — who you gonna tell it to? Or who's gonna listen? Or what can they do about it? I've also belonged to a federal plan for 35 years or plus — and with the uh understanding at that time that... all your medical problems would be looked after and you'd be getting A1 medical treatment.... I suppose that stays in my mind a little bit too that I paid into this bloody thing for all these years and was promised first class medical treatment when — and no doubt I'll get first class, but when, you know? So it's not like I just came into the province uh — three months ago and then all of a sudden I'll want this and want that.... Put a hell of a lot more into it than most. And yet I suppose you can't ask for priorities because of that basis alone... I was born at [the X Hospital]. I have lived here all my life. So it's not like we haven't paid taxes or paid our dues I think that, you know, this waiting list business is -- well it's sadistic! It really is we're not animals. If I was a dog ~ I could get x-rayed and have surgery within one day... And uh -- I'm a human being and I can't have a heart operation ... And I don't remember ever in my life — and I was born in the Depression, ever being refused a medical service in this province. -- And that was when we were poor -- and you still went to hospital and you were still cared for. In a second, and even more universal way, the participants perceived a loss of dignity in relation to the inattention afforded them while they were waiting. They believed that concern and respect for them and their predicament were lacking. Perceptions of abandonment by members of the health care system and a sense that no one cared about their situation were common. It seems as if your doctors don't give a damn whether you kick the bucket. The hospital I'm sure doesn't care. -- You know, so who in the hell does care? She [the receptionist] said, "Well there's other people worse off than you are.. . . you're not that bad."— I thought how the heck do you know? So, I says "Well, I don't care how bad you think I am — it's [waiting] not helping me, you know." Like I feel he [the surgeon] had to me -- more or less a promise... 'cause he says... "I 108 will do you by the end of [the month]." Okay they didn't do it, why didn't they phone? It was fine to say, okay, "I'll do you the end of [the month]." Okay, something happened. They didn't do me. Why wasn't I phoned and say, "gee, I'm sorry that" — they had too many emergencies. I don't care what they tell you but, "we cannot do you but we'll try very hard to do you in a couple of weeks" or something... At least phone and tell you. They don't care — you know. They don't care. You're just another body — you know. The longer it drags out the more uncomfortable it gets, to say the very least. That's what I think is the cruelest thing about the whole situation [laughs]... it wouldn't be so bad if you weren't a forgotten number, just put you on the back burner . . . It would be nice if somebody had the time to keep in touch with people — in my situation, just, you know, let you know that yes. . . you're still on the plans... as soon as we can get you, we'll have you in. We'll do what has to be done actually I've had thoughts about even finding contacts and find out if, hell, am I still on that stupid list? Did you guys forget about me or did you p8ss me up or did somebody make a mistake, you know? The participant who had waited almost a year for surgery described his sense of feeling forgotten. He originally had been told he would have only a six week wait for surgery. At the beginning and end of the month following the elapsed six weeks, he had contacted the surgeon's office to inquire about the scheduling of his surgery. When he made his second call he W8S instructed that there W8S no need to call back again because he would be contacted at the appropriate time. He had subsequently received no news about a date for surgery and had not called back himself. I should have received some word after all this time that I was still - - still on the waiting list, you know. Like I mean, not forgotten. 'Cause that's the way I was beginning to feel that way. When you mentioned you got my name at the hospital well — I felt brightened up. Well, my name's still there. — And anybody I told says... "We're glad to hear . . . because we were beginning to think your name was off the list." Only the participant who was employed full-time explicitly stated that he did not feel forgotten as he waited. He explained that this was due to his trust in the professionalism of the medical practitioners. They're professional people I really can't see me being forgotten There's no way I would forget something that serious. This individual had, however, contacted his surgeon's office several times during his waiting period. Perhaps this contact, although initiated by himself, contributed to his sense of not feeling forgotten. For most participants, therefore, loss of dignity was appraised in relation to the wait in 109 two ways. First, they perceived that they had been placed in an undignified position by being required to wait for surgery. Second, they believed that while they waited they were treated in less than a dignified manner. This loss of dignity contributed to a lowered sense of their self-worth and frequently eroded their self-esteem. The wait, then, W8S predominantly appraised in terms of loss. The losses most commonly described by the participants included losses of: finances, freedom, time, and dignity. Threat of loss. Associated with the wait was an intensified appraisal of the illness-related threats. The threat of having a heart attack or dying was markedly enhanced by having to wait for surgery. I'm more afraid of not having the surgery than I am of having the surgery . . . in the meantime I really don't want to die while they're making up their minds [to call me in for surgery]. And I know that that's what's going to happen. I feel it very sincerely that if I can't have this surgery while I'm up and at it — then I'm, I just don't have a hope. What's the end of March to me? What is that supposed to be? The promised land? If I can live till the end of March I might live. So until.. . then [the time of surgery] I've got to either sit here and hope I don't die or — you know, before that or whatever... We've got people like myself... wondering - - which is gonna come first, the big one or the hospital? So that's scary, you know. You don't know if you're gonna make it or not and — like my heart is not damaged. Of course I'm lucky. And I'm always so scared if I get another heart attack I could damage it and then — what chance have you got? . . . Much better to go while your heart is okay. You don't know — maybe something could happen. You might have a heart attack I suppose in that waiting time. In last night's, night before's paper it said what 20, yeah, it was yesterday's paper, 24, 26 died in B. C. last year waiting. . . . you read something in the paper, so and so died of a heart attack... and holy Christ! I'm, I'm next. A fear of death during the night was a common occurrence for some participants. One participant resorted to taking a sedative. I find nights the hardest. Long. Well I take a sedative now. I just couldn't do it. I would wake up 20, 30 times a night. Sometimes I think I used to wake up to make sure I was still here... Although there was variation in the frequency and intensity with which these threat appraisals were made, thoughts of falling victim to either of these threats were common for most of the 110 participants. Consequently, the perception of vulnerability in relation to these threats was also increased by waiting. Pain. Although all participants described losses and threats associated with the wait, two participants also provided information about actual or potential gains appraised to be related to the wait. One individual appraised the wait as representing time which could be used constructively. This, however, gave rise to some guilt feelings when he thought about the experience of other individuals who were waiting. But I try to make it and I think that it can be a positive thing -- having this time off. I'm trying to make it a positive thing. I don't see it necessarily as a negative thing... like everything I read in the newspaper ... is about... how terrible it is having this kind of a wait and this stuff. And here I am kind of enjoying it -- you know. — And uh so I suppose there's a certain amount of guilt in there about that. It is possible that this participant's ability to transform the wait into a gain was related to his university preparation in the social sciences. Another participant initially appraised his wait as an opportunity to have a holiday from work. It [waiting] has its pros and cons. I'm making almost as much on my health and welfare as I was when I was working -- and I'm sitting around So in a sense it's like a holiday --but not knowing when, where,.. the big one's coming, you know, you can't do anything! As time passed, however, he found that the reduced income, the presence of symptoms, and the uncertainty with which he had to live greatly reduced his perception of gain. Most of the participants adamantly stated that waiting provided no gain whatsoever. It has not benefited at all waiting People that needs [sic] it should be done. You know I can't understand this long, long, long waiting period. People have died from it. No I can't say there's anything really positive about waiting. It's — I would just as soon have had it to the point where I seen the doctor and went in the next day, this is it! — Oet it over with. Even the two participants who had appraised some gain to be associated with the wait did not prefer to have a prolonged wait. For me right now I've been using this time constructively but I don't, I think that I would just 83 soon -- gone in and got the damned thing over with ... I don't think I would have Ill chose that way. I don't see any — any need for it. Participants' perceptions of the duration of an ideal wait ranged from "the time i t . . . [would take] them to wheel me across [to the operating room] after the test was conclusive enough to say you needed it done," to one or two weeks following angiography. About half of the participants regarded a one to two month wait as tolerable given the current circumstances. To summarize, then, the wait was primarily appraised in terms of loss. It not only accentuated the losses engendered by illness but also generated additional losses. These additional losses were described as losses of freedom, time, and dignity. The wait was perceived to exacerbate the threats associated with illness. Although two participants described some gains associated with the wait, all of the others perceived there had been no gains from waiting. All participants believed that, ideally, they should have had their surgery shortly after diagnosis of its need. Psvcholoaical/Emotional Reactions A number of reactions to the situation of waiting were described by the participants. Helplessness was a universal psychological reaction to waiting and dominated the entire wait. Other reactions were also identified and included the following: feelings of depression, anger /frustration, fear/anxiety, and boredom. Helplessness. The prevailing psychological reaction to the wait was that of helplessness. The wait represented a situation of "no control" to the participants. They perceived that there was nothing they could do to change their situation. And here I'm right back in the same damned boat - - I was when I was a kid in the Army --waiting for, for the hospital and it, it ticks me off but yet — there's nothing I can do. In a way what they've done is sentenced me to kind of a life sentence. ... I guess that sounds violently dramatic but it's true. Urn — I once kind of associated it with being on Death Row. I'm waiting — and I might die and might not. You know? I might get a reprieve — and I might not get a reprieve. — And I think that's really what it is. I think you're really in your own prison. You didn't make it but you're there. ... And you've gotta wait for somebody to make that decision to let you out — or let you live. 112 But I do know there's gotta be a better way than suffering and being scared — frightened — and that terrible indignity you feel, that you can't help yourself... I'll tell you exactly what it's [waiting] like. It's like being a candle left in a room with the door closed and it's slowly burning down. That's exactly what it feels like -- you know --because it's such a helpless feeling that there's nothing I can do. One participant's perception of helplessness seemed to carry over to night-time when he frequently had nightmares in which he felt victimized. ... a lot of nightmares — and suffocating and of being, always being confined uh -- it's either something holding you down or uh struggling which I've never done before.... But now I have some terrible nightmares. You wake up with a terrific startle, I mean, and it takes a lot to settle down -- and you don't know what the hell you should do — cry wolf or just, just let it go away by itself. But it's happening more frequently. Some participants felt so bound by their situation of waiting that they became extremely self-preoccupied. Their feelings of helplessness were so intense that it was difficult for them to see beyond themselves and their own predicament. This preoccupation with the self was associated with a diminshed ability to be supportive or empathetic to others. Instead, their own needs had to be given top priority. When participants recognized that they were self-preoccupied it made them feel selfish. It does seem kind of selfish but -- whole existence centers around one person. I'm sure that there's others in a lot worse straits but right now I have a hard time getting past me. [tears in eyes, reaches out to touch researcher's hands] ... and getting a lousy cold. And thinking, oh gosh, have I blown my chance? And being selfish and thinking if they phoned and I couldn't go somebody else would get that chance, [tears in eyes] — And I haven't lived like that. I wasn't brought up that way. Helplessness, therefore, was a universal reaction to the wait. Although it was present to some degree in all of the participants, there was marked variation in its intensity across participants. However, all participants expressed that they were in a situation which they had no power to change. Thus, helplessness was associated with being a victim of the wait. The other major reactions to the wait were described as fluctuating over time in their presence and intensity. Three major categories of reactions could be identified: feelings of depression, anger/frustration, and fear/anxiety. As one participant stated: "you get urn, angry 113 at times — and you get depressed at times — and you get over-anxious at times — uh -- maybe even to the point you're being a little frightened." Most of the participants described manifestations of all three reactions. Usually these reactions were short-lived and recurred throughout the wait. Feelings of depression. Five of the participants described intermittent feelings of depression as being prevalent throughout the wait. All of these individuals recognized when they felt depressed. Feeling "down" was usually the term used by the participants to describe their feelings of depression. Lately ... I don't even want to go out of the apartment! I feel too tired. I don't feel like going out anywhere or ... nothing!... you sort of lose interest in a lot of things ... and next thing you know — uh, you're downright down in the dumps!... and it can probably be all — blamed on this sitting and waiting. Sometimes when I start heeding towards a — you know — a deep end... I have to stop myself and get onto something just to get my mind off some of it, you know unpleasant thoughts... . just because you're down ... you still gotta stay somehow, maintain some d i g n i t y — I have periods that are days where I get depressed -- really b8d and I know uh, that's when my wife won't leave... the house and I appreciate it it would be very, very easy to just — just turn into a — just a vegetable and just say hell with it, what's the sense? 'Cause what am I getting shaved for? What am I getting ready for? What am I combing my hair for? What am I brushing my teeth for? I'm not gonna do anything. I'm useless 8nd, you know, well you get these ideas and don't, don't misunderstand me. But you have to fight it. Gees I've had some downs -- that I've never experienced before... Like yesterday was bad. I was really depressed. I had a bit of depression last night. It's better today. — I don't know what's wrong... And you get depressed — a little bit depressed at times. Not always, but I do get depressed and uh — you know, get it over with and... well I don't think it's long lasting. It's not that it uh, you know, you get depressed for a time and you get out of it — come out of it in a shorter time It doesn't stay with you, the depression is not... chronic. It appeared that feelings of depression arose from the many losses created by the situation, and, in particular, from having no control over it. Anger/frustration. The majority of the participants openly expressed their frustration with being in a situation over which they had no control. Although most of the participants stated that there was I H little point in getting "angry," "upset," or "bitter" about their predicament, more than half of them openly expressed anger to the researcher. Several individuals stated that they usually kept such feelings to themselves. Anger was customarily demonstrated by blaming. Most of the blame W8S placed on the "government" or the "system." It doesn't l8st but [ I get] more angry at times... Researcher: Is the anger associated with anything in particular? I suppose the system. I — I say "why, you know, why?"... if it is a money thing - - you see so much abuses [sic] of people . . . beating every system we have . . . millions [of] overpayments of people that's bleeding our system, hasn't paid nothing into i t . . . Whether I live or die - - depends on a lousy dollar bill and really makes me angry.... I don't know where — where the powers that be — think they're coming from that they can choose whether I'm gonna live or die. Only God can do that. Not governments . . . our politicians wouldn't ride around in a car that they didn't think would make it to the corner. So I don't know why they think I should have to walk around in a body that I'm not sure is gonna make it till tomorrow. They would take it in and their mechanic would fix it. Well I'd like to take mine in and have my mechanic fix mine Now it makes me angry if for a few dollars — I'm going to lose my life - - and my grandchildren are gonna lose me — my children - - My husband is going to be 60 years old [this year]. We've waited a long time for this time in our life. And it's not fair to him either. Where does he go at 60? How does he start his life over? The same individual who provided the quote immediately above also felt that society had to assume some responsibility for the long waiting periods. So when we're blaming - -o r trying to shift responsibility - -we really have to take some of the blame ourselves because we're a very greedy society - -you know. We think we're getting something for nothing and we're not. That's what we're getting. We're getting nothing for nothing. And I'm afraid that's where it all comes down to - - if we don't pay for it we won't get the service... Occasionally, anger was displaced on family and/or friends. I want this damn thing over with. I W8nt it done and I'm angry because I can't h8ve it done. So I take it out on my husband and I take it out on the people around me. Urn — I don't mean to but invariably I do. And I think that's where it's hard on them - - you know, urn - - They don't know what they can do for me. If they leave me alone they're ignoring me. If they do too much for me they're fussing. They can't win. And uh - - and so it's all related to time. Too much time! Not infrequently, the frustration and anger generated by the situation of waiting were manifested through minor personality changes. Several participants mentioned how they had lost their usual sense of humour and were easily irritated. 115 I get cranky. It doesn't take much that I snap. And I've got a... friend if he says something wrong ... I really get mad ... I get annoyed.... He phones me and [asks] "What are you doing?" [I reply] "Busy." I'm not doing a damn thing, you know, [laughs] And I know he doesn'tmean it. And I, I feel that's not me. Like when I feel better you could say the same thing. I'm probably gonn8 laugh and say — "oh well, oh, you don't have to say it that way" and make a joke out of it. I don't make jokes anymore and that bothers me. I didn't really think it was affecting me -- but I find myself snapping at my family - -urn --thinking that they don't quite understand what I'm going through myself and I feel that they're sometimes selfish. It must be related to this thing [waiting for surgery] somehow.... I've been having rages now ... that I never had before at all, you know. And I sure as hell don't want that to go on. ... I've been chippy, really, really bitchy. But I haven't exploded or anything I get in traffic now, oh, you know, you son of a bitch, lean on the horn -- and this kind of stuff. Like that's just not me. I've never done that kind of stuff before. These reported personality changes were distressing for the participants. Although illness was partially responsible for some of these changes, the participants perceived that the wait was mostly responsible. Anger and frustration were therefore prominent reactions for some of the participants. Sometimes anger was outwardly expressed. Frequently it was manifested by finding someone to blame for their situation. Sometimes it was displaced onto other people. In other cases, the frustration and anger showed in more subtle ways such as a proneness to irritability. Fear/anxi6ty. References to feelings of fear and anxiety were made by the participants. However, some participants described these feelings more frequently and with much more intensity than did other participants. It seemed that there was a certain degree of underlying anxiety present throughout the waiting period. The act of waiting appeared to be anxiety-inducing in itself. As one participant stated: "Stress is related to, you know, waiting for things to happen." A major factor which contributed to this anxiety was uncertainty. Uncertainty permeated the wait in several ways. The participants were uncertain of how long the wait would last, whether they would live long enough to have the surgery, and whether they might sustain other illness-related complications while waiting. 116 When descriptions of fear were made, they usually were related to the threat of a heart attack, death, or the upcoming surgery. The wait appeared to enhance the fear and anxiety already aroused by the threatening nature of illness and surgery. I'm more afraid of not having the surgery [i.e. dying while waiting] than I am of having the surgery. I'm always so scared if I get another heart attack I could damage it and then — what chance have you got? I'm still very nervous about it [surgery] — but that's, that's the damned waiting. If I didn't have time to think about i t . . . I think I'd be a better patient — and my recovery would be better than this — trying to think of all the horrors that can happen. When the participants described their psychological and emotional reactions to the situation of waiting, they frequently made reference to the variable of time. Specifically, many participants perceived that they were victims of time. The longer the waiting period was sustained, the longer they had to live with the unpleasant emotional reactions engendered by their situation. Moreover, the prolonged wait provided them with "too much time" to think about their predicament. This h8d the effect of intensifying their psychological and emotional reactions which made the situation even more distressing for them. Participants described how the wait provided them with too much time to feel sorry for themselves. Repeated thoughts of this nature enhanced their feelings of depression. As one participant stated: "A guy could just sit around and feel sorry for himself 24 hours a day.... you have to fight it." Having too much time W8S also related to feelings of anger. For example, recall that the participant who displaced anger on her family attributed her reaction to "too much time!" Many participants perceived that having too much time enhanced their feelings of fear and anxiety. Often, this was because their thoughts predominantly focused upon the threats associated with illness and surgery. It all seems to rotate in the same old... thoughts. Uh, before you have your operation you suppose you might have the big one... or after you have the operation, is it gonna help? ... there's a lot of things that enter the mind like that... And all this I've got time to think about and I shouldn't. I shouldn't h8ve any time to think 117 about all these horror things - - and it is a horror thing . . . I've been allowed to think negatively and I shouldn't. I should have only had time to think about how great it was that [my surgeon] h8d chose to be my surgeon, that he was going to operate on me, that I felt comfortable with him. Here it is. It's over and done with. And no, no chance for negative thoughts — only chance for . . . the positive end of it. Now I find the negative sorta — keeps outweighing the positive with me. And that to me is not the way it should be in this type of thing. But you think about it often just in well, when are you going in, uh — how long you'll sit around waiting and — this kind of stuff more often. . . . And you have too much time to think — where if they, you know, they had you in, bang, you might worry to beat hell for a week but that's it. And either you make it or you don't. But if you don't you're not gonna know about it anyway. But this bloody waiting all the t ime. . . At other times, a general mental anguish was expressed in relation to waiting itself. It's hard on your nerves, you know, because you think — oh gee, maybe I'll be done — maybe not this week - - maybe next week... . This waiting too it — it kind of affects you mentally a bit because that's all you think about, you know, and I don't think that's good either.. . Clearly, the wait provided the participants with too much time to continually appraise the losses and threats associated with all three facets of the experience of waiting for CABG surgery. One participant W8S extremely articulate in his illustration of this point. There are a lot of hidden factors that you start analyzing and you think about it Because the actual, the physical aspect of just the operation is just the tip of the iceberg. — It's what's down below. There's a huge turmoil — there. And that's what's hard to deal with. . . . you put all these things altogether. It's more to it than not being able to do things, not being able to go to work, uh not making the kind of money that you're used to uh . . . And let's be honest uh your sex life is down to practically zilch. . . . so all these things add up and . . . that's a huge load on your mind. And you're shouldered with this and . . . there's really, I mean what can you do?. . . I don't want to be talking to a social worker or, or psychiatrist. It hasn't reached, reached that stage, . . . I'm dealing with it. But uh — I really don't know how much longer I can deal with it rationally, as rationally as I'm doing now But you know the longer it takes to get the job done, the more morbid the thoughts tend to become.... And like I say, you can't help it. Your thoughts will get more negative and more morbid with each day that, that you hang around and wait. I don't think it [having the surgery done right away] would have been as drastic as, as this period of waiting and uncertainty. — 'Cause this, mentally it's hard not even just for me but like I said earlier — everybody around me — everybody that's concerned with me uh — part of my life, I think it's harder on them than it is on me. The above excerpt dramatically illustrates the psychological distress created by having too much time to think. Three participants described night as being an especially difficult time. Their minds were 118 especially active then. Oh there's an awful lot of time to think -- especially at nights. You go to bed and you can't sleep. -- And your mind is just going at high speed. You're in overdrive. See physically you're in your low gear and your mind is in overdrive. The wait was thus perceived to be harmful because it provided too much time to grieve losses and to anticipate threats. One participant perceived that the effects of her wait had been so psychologically harmful to her that she would have preferred to have never been told she needed the surgery until such time it could be performed. But when somebody holds out their hand and says to you — "you can live with a better quality of life and maybe you'll get some extra time" -- and then turns around in the next breath and says, "but I don't know when I can do this for you!" -- I would rather never known that I could have the surgery. I would have liked to have lived in that little dream world that the worst that would ever happen to me was angina. Boredom. Another result of having too much time was that it sometimes created a state of boredom. Boredom was especially problematic for participants whose illness imposed major restrictions on activity and for participants who were away from full-time employment. For these individuals, the time provided by the wait seemed unending. I was bored silly sitting home by myself. 1 thought, well, I've gotta do something -- so I started knitting and it helps. What's been most difficult about waiting? Well — I would say boredom — more than anything.... this being at home... the first time having all this time off [work] and being restricted you can't do too much. You know, it all adds up. Feelings of boredom were therefore common for those participants who had too much time on their hands and insufficient ways to fi l l that time enjoyably. The wait was thus associated with a number of psychological and emotional reactions. Feelings of helplessness were universally expressed. The participants felt they had no control over their wait. Feelings of depression, anger and frustration, and fear and anxiety were common. Having too much time to think was often perceived to not only cause these reactions but also to intensify them. Another reaction that resulted from having too much time during the 119 waiting period was that of boredom. Coping with the Wait The participants revealed that they used a host of different strategies to cope with the wait and the losses and threats inherent in it. Although there were individual differences in the specific types of strategies used, there were similarities across participants with regard to the purpose of the utilized coping strategies. Most of the coping efforts were directed toward establishing some control over the situation, reducing the threat of a complication while waiting, and managing distressing emotions and thoughts. Considering alternatives. This strategy was usually employed in the early part of the waiting period. It was clearly an attempt to shorten or eliminate the wait and the losses and threats engendered by it. Five participants considered the possibility of going elsewhere for surgery; however, only one individual actively pursued this option. I thought of phoning the medical association to see i f . . . they would pay for an operation in [city X]. -- Then there's always the, the setbacks [sic] of ... I can get to [city X] on my own, but after the operation, how do I get back? They were thinking about putting me to [city Y]... I'm not too fussy about doing that. Uh, for one thing, it's uh -- I suppose if you knew ... one of the doctors or had prior experience with him you'd feel a little safer but you don't, you know ... you don't know what their reputation i s . . . But I'd still go. If they said, go, yeah, I'm gone -- s u r e — But that's out it was a thought and uh, it hasn't come about. I could go back East to have it done — by probably the best doctors they can find in nation Canada... but.. . what would my wife do? ... she would have to come back with me. She could never stay back here. And there ... would be loss of her wages too. So it would put the whole family — in a bind so — I've more or less made up my mind that I'm gonna have it done here — one way or another. And I was gonna go [elsewhere] because the BC Medical had finally approved it. And I was gonna go and my -- my MD phoned the heart specialist and told him about it. And that's why he called me right away. He called me right away... and.. told me he'll do me around the [middle of the month] and... definitely... by the end of the month. The idea of going elsewhere was often abandoned because the participants thought of reasons why it was not feasible. Although a few participants had accepted the idea, it never became a reality 120 for them. Contacting the power source. Most of the participants perceived that their surgeon had the ultimate control over when their surgery would be performed. To them, the surgeon represented the person who had the power to control the length of time they had to wait for surgery. Therefore, efforts to discover what was happening with the waiting list and what that meant for the date of their surgery were usually directed towards the surgeon. Often, however, because of inaccessibility of the surgeon, the participants had to resort to the next best sources of information, namely the surgeon's receptionist and/or the cardiologist. It W8S apparent that most participants made contact with these individuals not only to obtain information but also to draw attention to themselves and their individual case for surgery. Some individuals regularly made telephone contacts to the surgeon's office throughout their wait. One individual used the strategy initially but later abandoned it. Often the strategy was contemplated but never acted upon. I was thinking of phoning . . . that surgeon again . . . or going seeing him, see what's happening. — But I feel that he'll just tell me that there's nothing he can do. [When I visit the cardiologist] I'm just gonna try and find out if — how many people are ahead of me... Or the'yre not gonna do it [surgery] or they're gonna do it or — what the hell they're gonna do.... So I'm gonna ask to see if he can enlighten me on when . . . it's gonna take place. Nine chance [sic] out of ten he won't know it - - anymore than I will. But at least I'll be able to ask him. So I'm phoning them today. I'm waiting till about four o'clock. If they haven't phoned I'm phoning. . . . But I'm gonna phone and I'll demand a date. I will. Because this is so — probably not gonna do any good [laughs] but I'll give it a try. I'm gonna call him again. I'm gonna keep buggin' him.... I was going to talk to . . . [my surgeon] sometime this week and see. Give his nurse another dingle. Every time I phone though he's not there. — Doing, probably doing an operation.... [The last time I called] She said "well maybe you should talk to your cardiologist and see .. . what. . . you think about going to [city X] or something like that?" I don't like the idea. She said "there are other... alternatives."... If I phone up again at the end of this month which I plan to do .. . I'll just phone up and say, you know, "how is it going? Is it, you know?" These excerpts illustrate that the participants expected few results from their efforts to solicit information about the waiting list and a date for their surgery. However, even if they did not 121 receive information, they perhaps were somewhat comforted by the fact that they had reminded those who were in positions of power of their existence and need for surgery. Additionally, it probably gave them some sense of control over their situation in that they at least had tried to do something. Two of the participants who used this strategy expressed ambivalence about calling the surgeon's office. ... if you're gonna be very persistent... bugging them to death. They say "Well, gees well, let's get him in and out with." You know, I think that works. But is it worth the turmoil? You know 'cause some people can do that and it's part of their natural life. The other person it's gonna take a lot out of them to do it. I've thought of keep phoning my doctor, would that help or would it hinder? Will it make him mad -- and you know say, hey, this guy is buggin' me again and all that?... You don't know whether that's gonna put you farther down the list or — you know, or what to do... or just sit back and just wait. One of these participants attempted to cope with his ambivalence about contacting the surgeon's office by seeking advice from the researcher. Maintaining a positive attitude. All of the participants described strategies that they employed to maintain a positive attitude about having to wait. One strategy used by most of the participants to cope with the harmful effects of having too much time while waiting was that of distracting onself. This strategy helped to not only decrease the boredom associated with waiting, but also to distract the mind from thinking negative thoughts. Often this entailed making deliberate efforts to keep themselves busy. ... actually it's [waiting] the shits, uh, you know, you don't know what the hell to do. So I just walk around, I take the van, I'll go drive somewhere, maybe to the park or something and then just walk around. Or I'll go downtown and walk around or I'll even walk downtown. And just to be killing time and every time I start thinking like that [having negative thoughts or worries] well I usually get up and take off somewhere -- get it off my mind... .. . it keeps my mind occupied. That's the only reason I'm knitting. I hadn't knit for 20 years, you know. But I'm knitting and ... I don't know what I'm gonna do with it but --keeps me going anyway and keeps me occupied. — Imagine not knitting for 20 years and starting again!... I was bored silly sitting home by myself. I thought well I've gotta do 122 something. So I started knitting and it helps. I do a lot of reading now I find myself reading books more -- watching television more which is not really -- not great but -- haven't got into the soaps yet so... I make a point of going to see the grandkids and things like that. It's time, it's something to -- take your mind off and, and do something, you know, that you probably wouldn't do ordinarily. You see now I need to be doing something — to keep me occupied. Consequently it becomes a chore. But when your time is spread thin ... you try to squeeze in as much as you want. It leaves you wanting. Now you've just got too much time on your hands — and you feel... you're doing it because well, there's nothing else to do. You have to do it. You know it's a chore I gotta dream up things to do. Well fortunately, I, I have a few hobbies which I enjoy doing even now But you don't want to overdo it because then you run out of those favourite things to do — enjoyable things to do and there 8gain you're at a standstill so the things that I still really enjoy... I gotta do sparingly. Three of the four participants who were off work made regular visits to their places of employment. It is likely that this activity not only distracted them from thoughts of waiting but also helped them cope with the losses associated with being away from work. I... just play the waiting game, I guess. Researcher: How do you play the waiting game? What do you do? Well — ho! I go to work once in awhile now ... find out what's going on and, you know — talk to the guys and urn see what's doing or new or what gossip is going on. A number of participants stated that they tried to avoid harmful thoughts by deliberately choosing not to think about their situation of having to wait. By not dwelling on their predicament, they were able to feel less negative about it. But it got to the point now if I — well if I start thinking about it too heavy I'll drive myself crazy, you know what I mean? So I just let it ride along... I try to forget about it, you know. I just try to forget about it. ... you know you get fed up waiting and uh -- so you try and push it out of your mind and carry on the best you can. About all you can do. These excerpts convey the many ways that the participants coped with waiting by employing strategies to distract themselves. Keeping thoughts to oneself was another way that some participants coped with waiting. By not conveying to others how stressful the situation was for them, participants were able to preserve some sense of self-esteem. This 8Ct of "putting up a good front" helped them to maintain 123 a positive attitude about waiting because it enabled them to think that they were coping relatively well and not burdening others. ... we both know what the problem is. Discussing it day after day, over and over, riding the same old horse into the ground is not gonna prove anything, not the way I see it But there's no sense in me [sic] constantly bringing up the subject and have her [my wife] hyped up and worried about it — because she's going through a, a period of helplessness now. So no matter how much I complain to her there's not a darn thing she can do about it. And that would make her feel even more useless. So I think the less gloom I radiate, the better it is all around. Plus, you know, in my own mind I think -- uh — having consideration for other people — around me makes me feel just that much better. 'Cause I feel that well -- maybe I'm not that big a burden on anybody. Most of the participants used the strategy of hoping to decrease the threat of dying or having 8 heart attack while waiting. Hope was also sometimes used to anticipate that the wait would soon be ended. ... there's just this awful thing that I won't make it to the end of March. Now hopefully I will, you know and — and I've always been a very realistic person but — somehow or other I can't get past that. I just can't get past the fact that that's so far away. So until... then [time of surgery], I've got to either sit here and hope I don't die or — you know, before that or whatever... I saw in the paper, I think it was last night that more patients are getting through faster and so forth so it — kind of makes me feel as though it's gonna be any day — I'm hoping. Six of the participants coped with the wait by making positive comparisons of themselves with other "waiters." Finding a reason why they were better off than someone else enabled them to have some positive thoughts about their own situation. It seemed that the strategy of making positive comparisons also enabled them to perceive that they had more control over the situation than did others. You know, myself I'm not that depressed over it or anything else but -- I know -- lot of people that are more emotional than I am -- and to them something like this would probably be dynamite! It could kill them. A lot of people worse off than I am — but that doesn't make me feel 8ny better [laughs], you know, really I'm a strong person — I really am But if I was... a weak person I'm sure it would affect me mentally — because you think about that 811 the time. I think for some people uh — if they have pain and stuff -do it. I admire them and then I feel sorry for them too. - I just don't know how they 124 I imagine I'm a lot better off than a lot of people — in this situation because uh -- my financial — uh status is probably more favourable than a large degree of the people in this situation. — Uh, I can imagine how a guy would feel if he had two mortgages and he had young children, payments and stuff like that. I don't have that. And so that's a plus So that, that's a load off my mind. ... And I can see how a person with — lesser, maybe a lesser personality or less mental strength would be looking to help by now. I ran really see how it could happen —'cause it would be so easy to just draw back in your little shell and just lock the world out. .. And I can see like if a person lived in an apartment, now that would be a real killer. If all your activities would be centred around a daily walk ... and then that would be it, you'd be confined to the apartment, I think that could kill a person in no time at all. Because at least owning a home, you can always find something to do But if you didn't have that — I don't know how a guy could handle the situation. I'm sure a lot of them don't. A few participants also compared themselves with other waiters to rationalize why some individuals had sustained complications while waiting. A guy dies after waiting 8 months but of course he must have been older and he must have been — you know, his blockages must have been worse... And then I saw a woman on TV ... and now she's so sick she can't have the operation ... I'm not sure but I think she was in her 50s. She looked 80! But I think her lifestyle was different from mine... I don't think she plays any sports. I don't think she (toes much activities — and I don't think she stays on her diet. I don't know for a fact but it looked like she didn't... and I think she had more wrong with her than just a heart condition. I think she said she had .. . rheumatism or something else. By finding differences between other waiters' situations and his own, this participant was able to assure himself that he was not at risk for suffering complications while waiting. Through making positive comparisons, then, the participants were able to maintain a positive attitude about their situation. It helped them to feel that they were less victimized by the situation of waiting than were other waiters. Most participants described how they coped with being in the no control situation of waiting by trusting the "system." Trusting that those who were in positions of power were giving their best effort and doing so in a just manner helped the participants to feel a little better about their own situation. Not infrequently, however, the expressions of trust were accompanied by doubt. ... you still want to believe that some people -- who are in the know, supposedly in the know, know what they're doing and there's a reason why you're in the situation. I mean I'm running out of excuses for these people ... you try, you know, to have some trust in the system, okay?... I like to believe that what's taking place is well the best they can do right 125 now. See, I don't want to be bitter. And I know if I start analyzing it too much and thinking too much and — and then you get bitter. And you get caught up in it. And I think it would be more harmful than — well certainly it wouldn't provide any comfort. ... without phoning them then you don't feel you're bothering them -- that they're doing the best for you they can. You have to assume that. If I had millions of dollars right now I can't buy a bed — at least I hope I couldn't. I would hope that, that it's a fair system. ... I think if Mr. Brown goes to hospital and, and uh he didn't go on the list a week behind me I might be inclined to say [the system is unfair]. But I know deep in my heart that's not the reason he's in there. The reason he's in there is because he has less time than I do. I don't think any doctor — I don't want to believe that and I would never believe that they would judge it on the 8lmighty dollar o r — urn, sure they wanna be rich. We all wanna be rich but not at the cost of life. They see too much death. But I don't believe that's the way the system works. Well the surgeon he's got his list there. And - -he will know which are the most advanced cases of the heart problem. And I think that uh being very sincere men those surgeons that they're going to give priority to the person that is in the most need. Another way that most of the participants demonstrated faith in the system was that they trusted that, if a serious complication should arise, they would be given priority for surgery. I think if there was anything that was really desperate -- I think they would find a way to urn -- bring about the surgery and advance it if it was, say, an emergency... Sometimes information about such a policy had been provided by the surgeon or cardiologist. Having the knowledge that the surgery could be done in an emergency situation seemed to place the participants more at ease. Having faith in the system also entailed trusting other individuals on the waiting list to wait their fair turn to have surgery. Several participants expressed doubt about the honesty of the others on the waiting list. They perceived that some individuals abused the system to receive a higher priority for surgery. One individual stated he knew people who had done this. I've had [known of] people that have had the operation before and the way they got it was nice — in my estimate. Researcher: Like how do you mean? Well they faked pains which cannot be proven. -- And they just... went into emergency saying they couldn't breathe and they had pains and everything. And there's three of them I know had their operation that way -- but they had it done! -- I don't know I could do that. ... when he [surgeon] interviewed me I was a hundred percent honest with him — and told him exactly how I felt and he asked me a series of questions which I didn't have to tell the truth to, to get a better priority And then you get wondering well okay since I answered 126 all these questions, truthfully how many people are interviewed that are, are either damn well lying or — you know exaggerating and saying yeah, I get twice as many pains as I do and they come on often and I can't do this and I can't do that? They get i n — it doesn't seem fair in that way. But I don't know. I would think the doctors must know from studying the x-rays uh — pretty well, you know, who W8S telling -- I don't know. Trusting in the system was a strategy commonly used to cope with the wait. It helped the participants to maintain a positive attitude about their situation of waiting by believing that the system was operating as efficiently and justly 83 possible. Maintaining a positive attitude was thus accomplished through the use of numerous strategies: distracting oneself, keeping thoughts to oneself, hoping, making positive comparisons, and trusting the system. Making sense of the wait. A11 of the participants spent some time trying to make sense of the wait. Everyone stated that they had been given little or no information about how the waiting list "worked" and how decisions were made regarding when to call individuals in for surgery. It seemed that they tried to make sense of the wait in order to explain to themselves why it was necessary and why they, personally, were still waiting. Certainly if there was somebody coming in there with a bad uh — heart attack and whatnot, they're not gonna take me in and leave him lay in the hallway. They're gonna operate on him. So that's gonna put me back - - which is understandable. ... they put your name on a list and uh somebody comes that's older and has more — angina and more problems, they are put in ahead of you. — That's the way I look at it. It's, it's the only way I can figure it. I donno maybe it's true they have many, many people worse off than I am but — I donno — I don't understand this waiting. . .. possibly the way I weighed it at first is — is that serious cases always jump ahead anyway. This is about all I knew about it. I don't know of any other way it works. ... it was understandable. But some guy is really laying down — they're not gonna take me. They're gonna [take] him I was thinking well there must be other people that are worse than I am so I'm a way down the list so I'm probably gonna stay down there. The participant who had been waiting the longest for surgery had searched for edditional reasons for his long wait. 127 I wonder if my being stalled is — on account of my age. You know, being the age I am maybe they say oh well, there's — others there and — and I don't know whether they figure the older you are the less chance of — of pulling through it or what. I don't know. ... And that's another thing that's kind of made me think about why I'm waiting so long uh — getting in for the operation is maybe they — they figure — a touch of uh emphysema ... I read not too long ago something about uh patients with emphysema they'll kinda — well they'll kinda hold back on them. They're a little worried about them. -- Now I don't know if there's any truth to that or not. Some participants also attempted to make sense of the wait by trying to predict what was happening to the waiting list. Information obtained from media reports or by word of mouth was often used to conduct the analysis. I kind of painted a mental picture in my own mind that well, if they do so many... a week - - i t would go down to say 250 --at the time I had the interview with him. Within so many weeks it should come down to me providing I was... on the bottom of the totem pole. But that's kind of a, well you're kind of fooling yourself because that's not how it works. 'Cause there are emergency cases, you know. So you can constantly be put back down. Several of the participants attempted to solicit information about the waiting list from the researcher. Often, they wanted to know the number of surgeries being performed each week at the hospital. Such information was valued because it helped them to imagine how their placement on the waiting list might be changing. When they perceived that considerable progress was being made, they were able to generate hope that their date for surgery would soon arrive. Sometimes the exercise of making sense of the wait seemed to induce more anxiety. When some participants reached the conclusion that they had not yet had their surgery because there were others "worse off," they began to wonder how they would ever get to have their surgery. After all, wouldn't there always be someone worse off? One participant wondered what had to occur to be given a higher priority. I took from the intitial interview with the surgeon that because I can manipulate fairly well and that I only have one plugged now — with one on the way — that I just got little priority, period.... but then what do you have to do? Have a heart attack to get better priority? Through the process of making sense of their waiting situation, the participants often generated thoughts about what would have made the wait less stressful for them. Many participants shared such thoughts with the researcher. They identified ways that health care 128 professionals could h8ve helped them to cope with the wait. Almost all of the participants expressed a need for regular contact from a health care representative. Contact W8S desired for two reasons. Firstly, it would have let the participants know that someone cared about them while they were waiting and secondly, it would have kept them updated about progress with the waiting list. Now I feel there should be some type of programme... where somebody from the hospital or somewhere — once a week or every couple of weeks — phone me or make an appointment to come and see me... just to talk to the patient -- and see if there's been any changes or -- what's happening. But there's nothing!... And there's so many people in the same boat. If they'd 'a had a little -- well it's like a car, you have a little preventative maintenance — they could still be running when [my cardiologist] told me to make an appointment with [my surgeon] . . . Well, right at that time I should have also had an appointment with somebody else to keep an eye. — Now, that way, you know, It could probably have a good effect on a person -- where --they have the feeling that at least you're being looked after. You're waiting but you're being looked after. ... well I say, once in awhile it could have been nice for them to phone — you know. ... after say like my time, a year, I think somewhere along the line there should have been ... a card sent or so forth, so forth where, you know, we haven't forgotten you or anything. ... if there was some kind of an office, 8 body, 8 department, — where there was a person who did nothing but kept in touch with people on the waiting l i s t . . . There could be one individual who could polarize all this information, funnel it through... from these doctors from their offices... [and] make phone calls in each doctor's office's behalf And if you could just keep coming back to them maybe once a week or something say — you know, we're progressing. That's where we are now and then, just how [do] you feel, how are you? And I think it would be a tremendous humanitarian service. It would be well worth somebody's 20,000 dollars 8 year, whatever they would pay a person to do that.... And I think — you'd make a lot of... people feel a lot better about their situation. I wish to hell — that's one of the kind of disappointing things that just — I don't like that setup of them phoning and saying -- like I guess there's gonna be some kind of a warning but uh — you know I think it would be nicer to know a little how it goes there... I think if there was a change in it or something if they could give you something ... I would like to know if it's gonna be in March or something -- just every once in a awhile. . . . every couple of weeks would be nice. ... if you phone them you're gonna end up talking to a steno — or receptionist that — has a set of rules how she'll answer all questions, laid down already. Urn, but if they phoned you then you [they] could say, "yes our list is down. We're — you're on 600 list, now we're down to 250 — uh, you're looking at two more months but from that point we'll get" — yeah something like that. ... if they kept it a little bit appraised of — what you're maybe looking at. . . . they're [the doctors] very tight-lipped about saying anything — keeping it from you like it was none of your business sort of thing. ... that's what I'm used to... they keep everything so secretive... 129 The participants thus felt that some of the stress of the unknown and the loss of dignity that they had endured in association with the wait could have been prevented through regular contact by a health care representative. The comments mate by the participants about the effects of the researcher's visits indicated their appreciation of receiving contact. Almost all of the participants stated that the researcher's visits had been helpful to them and that they had appreciated the concern they were shown. Most of them reported that the opportunity to vent their concerns and feelings was beneficial. All of the participants sought reassurance that their contribution had been helpful to the researcher. It seemed that it had made them feel less helpless by being able to help someone else. In summary, the wait facet was predominantly appraised as representing losses and threats. Losses associated with illness were perceived to be accentuated by the wait. Additionally, the wait was appraised as imposing other losses such as loss of freedom, valuable time of one's life, and dignity. The threat of death or a myocardial infarction was enhanced by the wait. Prevailing reactions to the wait were identified as helplessness, feelings of depression, anger/frustration, fear /anxiety., and boratom. The prevalence and intensity of these reactions were enhanced by the variables of uncertainty and too much time. Coping efforts included: considering alternatives, contacting the power source, maintaining a positive attitude, and making sense of the wait. Coping was predominantly directed toward trying to establish some control over the situation and reducing distressing emotions and thoughts. Ending the Wait The experience of waiting was described as being without benchmarks, or reference points, to mark the passage of time. Rather, it was a day to day existence from the time they received the news that they required CABG surgery until the time they went to hospital to have it. As one participant stated: "I just sort of take every day... as it comes. And that's all you can do." The 130 event of receiving the telephone call to come In for surgery, however, was predicted to he a significant benchmark commencing the end of the experience of waiting. The experience of the three participants who had received this news by the time of their second interview bore out this prediction. Reactions to the news were mixed with feelings of relief and apprehension prevailing. Oh it really made me feel good. Now I'm starting to get nervous about it's getting close you know. ... was really, really surprised you know to hear. But uh ... it was good to hear. — You know this, waiting all this time Now that I'm — get it over with I've got [indicates by gesture that he is apprehensive]... Researcher: So you indicated you were maybe starting to feel a little more apprehensive now? Yeah I am. Yeah I am. I am now, you know.... dust anxious to get In and get it over with now that I know that it's, it's close. A new threat was appraised, this being that there might be a cancellation. But I just kinda had it the back of my mind and hope this — I don't get a phone call, "oh, we have to postpone it for another -- week or so" --you know after all the buildup -- that would be a letdown. Attention became almost exclusively focused on the imminent surgery. Two of the individuals had a heightened desire to know more about the experience of surgery. One participant indicated she had numerous questions. The only thing I'd like to know more about when they take the vein out of here . . . How does that work? ... And how long is the operation? ... And how long will it be before I can really move around on my own? Like make my own meal and my own bed? This participant was concerned about how she would manage when discharged from the hospital. After she was informed about the exercise regime routinely practised in hospital before discharge, she expressed a great sense of relief and stated how glad she was that the researcher had visited her that day. Another individual used a visit to the hospital as an opportunity to converse with patients recovering from heart surgery. She repeatedly stated that the information she received from them gave her hope. 131 I hope I'm gonna look like some of these people I saw yesterday. Their colour was good. One chap had a valve and a double bypass done... And he had been up going to the bathroom and walking around. And his wife looked very happy. So I presume that, you know, once done, we become human again And I talked to them and I wished them well and told them that, you know, how pleased I was that they made me feel so more sure of myself and spent a lot of time talking to the people there They gave me hope. She specifically made an effort to see someone's sternal incision. It was very neat.... It didn't look bad at all. In fact I've seen my kids' knees look worse than that when I've taken them and had them sewed up. The third individual had extensively read about the surgery earlier in his wait and did not express a need for more information. He indicated that he was coping by thinking positively about the outcome of the surgery. Nothing is on [my mind], oh yeah I'm gonna lay there and die and all this sort of thing. I'm not thinking that way. Just thinking well about how good It's going to be — when it's all over — which I think is going to be the esse. Another participant expressed relief that the suffering and indignity imposed by the wait would soon be behind her. But I think in the end it's all going to be fine. Well it's gonna be positive. I'll positively be alive or I'll positively be dead but I'll positively be something. I'm not ever gonna be this half anymore.... I want very much to live. But I want to live a whole life. I want to be a person to be confident of my own thoughts and feelings and decisions... Therefore, the experience of waiting changed considerably upon receiving word of imminent hospital admission for surgery. At this time there was a sense of relief that the wait would soon be ended; however, this was accompanied by Increased feelings of apprehension about the upcoming surgery. Thoughts became less focused on the issue of waiting and more concentrated on the approaching event of surgery. Coping strategies became increasingly directed toward making psychological preparations for surgery. Chapter Summary This chapter has described the individuals who participated in this study and presented 132 their accounts of the experience of waiting for CABG surgery. Three major facets which represented the critical components of the experience were identified: the illness, the upcoming surgery, and the wait. Each of these facets held distinct meaning for the participants with the meaning of one facet always being influenced by appraisals of the other two facets. Ongoing appraisals of each facet occurred throughout the wait. The experience was thus complex and dynamic. The findings were presented as descriptions of each facet. Discussion was organized around the topics of the meaning of each facet, psychological/emotional reactions, and coping. Prevailing themes within each facet were identified. The illness facet was characterized by an appraisal of loss of normalcy. The participants' accounts were filled with descriptions of how illness had changed their lives. The key elements of normalcy lost through illness included: bodily functioning, leisure/pleasure activities, social functioning, family functioning, and employment and associated finances. Loss of control was a theme which penetrated all of the other losses. The threat of a heart attack or death was a significant aspect of the illness appraisal. The prevailing reactions to the illness were anger/frustration, fear/anxiety, and vulnerability. The individuals believed that they were ever vulnerable to potential complications. Having lost trust in their body, they constantly lived with uncertainty. Efforts to cope with the losses, threats, and emotions associated with the illness included the following: taking action, seeking information, making sense of the illness, and thinking positively. The surgery facet was represented by appraisals of both potential loss and gain. The threat of loss was perceived in relation to the actual experience of surgery and hospitalization, as well as to the outcome of surgery. The prospect of undergoing surgery was threatening because it would mean having to endure discomfort and could mean losses in physical and/or mental 133 functioning, if not loss of life. Uncertainty played a major role in this appraisal of threat in that there was uncertainty surrounding both the actual experience of surgery and its outcome. Contrarily to the appraisal of threat, surgery also represented an opportunity to regain lost elements of normal life. The prevailing reactions to the prospect of surgery were those of fear/anxiety and ambivalence. Ambivalence was felt in relation to the necessity of surgery and the desire to proceed with it. Seeking information, preparing for surgery, and thinking positively were the major strategies used to cope with the prospect of surgery. The wait facet was typically appraised as a negative part of the overall experience because it prevented the acquisition of the potential gain anticipated from surgery and it accentuated the losses associated with illness. Additionally, it engendered losses of freedom, time, and dignity. The threat of illness-related complications was substantially enhanced by having to wait for surgery. There was much uncertainty in relation to the duration of the wait and the possibility of dying or having a myocardial infarction before the time of surgery. The wait was seen to represent a no control situation. This gave rise to feelings of helplessenss. Other reactions to the wait were feelings of depression, anger/frustration, fear/anxiety, and boredom. Coping strategies primarily focused upon considering alternatives, contacting the power source, maintaining a positive attitude, and making sense of the wait. This chapter has presented the findings of this study. In doing so, the experience of waiting for CABO surgery as 11 vol by the participants has been described. In the next chepter, these findings are discussed and considered in relation to pertinent literature. 134 CHAPTER FIVE DISCUSSION OF FINDINGS This chapter presents a discussion of the findings of this study. To enrich the discussion, the findings are considered In relation to pertinent literature. Literature Is used both to elaborate upon the key themes that were found and also to compare the findings of this study with the findings and observations of other researchers and authors. Much of the literature reviewed in the second chapter is reintroduced for this discussion. Additional literature is used as necessary to facilitate interpretation of the findings. The discussion Is organized to follow the same format with which the findings were presented in the foregoing chapter. Therefore, it proceeds in the order of the illness facet, then the surgery facet, and lastly the wait facet The Illness Facet Meaning Of the Illness All participants in this study described their coronary artery disease in terms of the losses it had inflicted upon their lives. Statements were repeatedly made which conveyed how life had changed in undesirable ways. Such statements were usually accompanied with the phrase "That's not normal for me." It was from such statements that the theme "loss of normalcy" emerged. Six of the participants described loss of normalcy by comparing their current self with the "normal self" that they had been before their awareness of their illness. The other participants spoke more in terms of losses which interfered with their living a "normal" life. The difference between these two kinds of appraisals seemed to be related to the length of time the participants had known of their coronary artery disease. Those who had their illness diagnosed within the previous year made the former type of loss appraisal while those with longstanding cardiac illness made the latter type. The duration of the illness, therefore, seemed to influence the 135 specific meaning of loss of normalcy. It was not surprising to find that the Illness was typically appraised in terms of loss. Indeed, loss is depicted in the literature 8S a universal aspect of an illness experience (e.g. Carlson, 1978; Shontz, 1975). A number of authors have specifically described the significance of loss for the person with cardiac Illness (e.g. Mullen, 1978; Pranulls, 1972). The theme of loss of normalcy which was found to be representative of the participants' appraisal of their illness, has been noted to have particular relevance for the individual with a chronic illness (Miller, 1983; Strauss et al., 1984). Therefore, the findings regarding loss in this study are consistent with the theoretical descriptions of It In the literature. Shontz (1978) has postulated that illness-related loses are of three types: biological, psychological, and sociocultural. The specific losses of bodily functioning, leisure/pleasure activities, social functioning, family functioning, employment, finances, and control described by the participants in this study, clearly exemplify all three types of loss delineated by Shontz. Theorists of chronic illness describe similar specific losses (e.g. Craig & Edwards, 1983; Miller, 1983) for the person with a chronic illness. In this study, loss of control presented as a common thread which wove through all of the other losses. For the participants, the illness was perceived to have taken control over many aspects of their lives and it had resulted in an abnormal dependency on external resources. Again, literature pertaining to chronic illness supports this finding regarding loss of control. Miller (1983a) suggests that maintaining a feeling of being in control is a major coping task of chronically 11) adults. Not only are these findings regarding loss congruent with descriptions of loss in the literature, they are also generally supported by the findings of other researchers who have reported on the preoperative period before CABO surgery. In particular, losses of social 136 functioning, leisure activities, employment, and family functioning have been found by others (Radley & Green, 1986; Penckofer & Holm, 1984). With regard to this latter point, Penckofer and Holm reported that postoperative CABG patients (3-8 months postoperative) recalled that prior to surgery they "were so concerned about themselves that they could not effectively deal with family matters... [and that] because of anginal pain they could not undertake their usual household tasks" (p. 63). The authors further reported that following surgery there was a statistically significant increase in family life satisfaction. Altered family functioning was also found by Radley and Green (1986) who reported that 3658 of the men they interviewed who were waiting for CABG surgery described family strain during this time period. The finding that family members and, in particular, spouses tended to be overprotective of the participants is supported in the literature. Cozac (1985) found from her interviews with spouses of patients having CABG surgery that they typically described themselves as being protective of their mates during the waiting period. Spouses in her study related that their need to be helpful sometimes interfered with the mate's need to be self-reliant. In the current study, participants stated they disliked this protective tendency not only because it interfered with their sense of self-reliance but also because it made them feel that they were interfering with their spouse's freedom in that they were being a burden to them. This tendency toward overprotectiveness on the part of the spouse has also been shown to occur during recovery from both CABG surgery and myocardial infarction (Frank, Heller, & Kornfeld, 1972; Stanton, Jenkins, Savageau, Harken, & Aucoin, 1984; Wishnie, Hackett, & Cassem, 1971). Therefore, it appears that this Is a common problem for families with a member who has coronary artery disease. For the participants in this study, coronary artery disease meant not only loss, but also, threat of loss. The most significant threats were fear of a myocardial infarction or death. 137 Undoubtedly, these threats were intensified by knowing that their illness needed surgical intervention and that they could not have the surgery until some unknown future date. The results of an investigation by Penckofer and Holm (1984) support the finding of a fear of death while waiting. In their study, patients convalescing from surgery recalled that preoperative^ they had been fearful of death and questioned whether they would survive until surgery. Yamada (1984) also reported that clients retrospectively recounted that they had feared a heart attack while waiting. A third appraisal that was made by some of the participants was that of gain. The theme of gain was substantially weaker than that of loss or threat. Not all of the participants mentioned gain in relation to illness and those who did spoke much less frequently about gain than they did about loss. Often gain was recognized through the process of "taking stock" of life. The specified gains usually centred around making positive changes in life such as adopting a healthier lifestyle, promoting a healthier lifestyle for other family members, and re-setting priorities and goals. Gain is conceptualized in the literature as a "positive life enhancing dimension of loss" (Downey, 1983, p. 7). Loss is by definition negative (Cassem, 1975); yet, by transcending loss, it is possible to discover and develop new interests, goals, priorities, and a more satisfying and fulfilling lifestyle than before the loss (Bertman, 1983; Downey, 1983; Smith, 1979). These types of discoveries and developments are inclusive of those made by the participants in this study. A slightly different conceptualization of gain has been formulated by Lazarus and Folkman (1984b). For these theorists, gain is viewed in terms of challenge. This conceptualization also has relevance for the findings of this study in that the individuals who were challenged to lead a healthier lifestyle seemed to appraise gain in this way. Thus, either theoretical approach to gain has utility for explaining this study's findings. 138 Several possible explanations could account for the low prevalence of illness-related gain appraisals made by the participants in this study. It is possible that the distressing nature of the "unnecessary1' situation of having to wait for the needed CABO surgery limited the extent to which the participants engaged in searching for gains in relation to their illness. In other words, the intensity of the losses may have made it difficult to look beyond the harmful aspects of the experience. Also, because the illness was largely regarded to be a temporary condition which could be corrected by surgery, individuals may not have looked for gains in relation to their current situation; rather, gain was perceived to be something that would come in the future after they had a successful CABO surgery. This point will be returned to In the discussion of the surgery facet. Before leaving the discussion of the the meaning of the illness, it is important to make one last observation. All of the participants conveyed that they planned to maintain their healthy lifestyle practices following surgery. Such statements seemed to imply an acknowledgement that their illness was a chronic one. Despite this acknowledgement, the prevailing appraisal of the illness seemed to be more analogous to that of an acute one (Craig & Edwards, 1983; Mechanic, 1962). The participants tended to believe that their current illness state was a temporary one which would probably be rectlfed by surgery. Therefore, In the waiting time before surgery it seemed to be acceptable to relinquish normal roles and adopt the sick role with the belief that this role would only be temporarily required. This view seemed particularly representative of the participants whose coronary artery disease had been recently diagnosed. Comments to the effect that many pleasure activities had been temporarily given up, that visiting had been "banked" until after surgery, and that serious efforts to lose weight were being delayed until after surgery convey such a view of the illness. It was also apparent, however, that the participants with longstanding coronary artery disease seemed to make new appraisals of their illness following the 139 news that surgery was necessary. At that time, the meaning of the illness changed from being one characterized by progressive deterioration (chronicity) to one which, hopefully, would be improved by surgery. In other words, they perceived that they could get well again. This finding has also been reported by Yamada (1984). Thus, participants' knowledge that their illness required CABO surgery significantly Influenced what the Illness meant to them. Psychological/Emotional Reactions Anger and frustration were two common reactions to having to live with the effects of coronary artery disease. Anger was expressed at having the illness and at having to endure the symptoms and losses engendered by it. In a similar way, frustration was felt because of the limitations imposed by the illness and especially because of the related loss of control. The excerpts from the clients' accounts revealed how they felt anger and frustration in relation to their individually appraised losses and threats some of which included: threat of early death (therefore, they felt they were being "cheated"), inability to assume responsibility for self, and inability to perform activities because of illness-related symptoms. Anger is said to be a response to an appraisal of loss (harm) or threat (Lazarus & Folkman, 1984b). In grief theory, anger is noted to be one type of reaction to loss (e.g. Engel, 1964; KObler -Ross, 1968; Parkes, 1972). Considering the vast array of losses and threats Imposed by the illness for the participants, it is not surprising that anger was a prevalent emotional reaction. It is also probable that the situation of waiting for surgery intensified the anger felt towards the illness. The finding that frustration was a common reaction to Illness while awaiting CABG surgery has some support in the literature. Pieper, Lepczyk, and Caldwell (1985) reported that during this time frustration was felt in relation to the inability to perform activities because of fetigue. Radley and Green (1986) reported frustration was expressed at the way the illness interfered HO with life (Radley & Oreen, 1986). Frustration with inactivity has also been reported during the first months of recovery following myocardial infarction (Wishnie, Hackett, & Cassem, 1971). The second prevailing reaction to illness found in this study was represented by feelings of fear and anxiety. The participants usually expressed these feelings in relation to the possibility of an Illness-related disaster. Such feelings probably were enhanced by the uncertainty surrounding the trajectory of their illness and the knowledge that it had progressed to the point where it required CABO surgery. Depicting fear and anxiety as reactions to illness-related threats is consistent with theoretical formulations of these emotions. Both are conceptualized 8S emotional responses to a stressor that is perceived to be threatening. Lazarus and Folkman (1984b) postulate that fear and anxiety are always responses to an appraisal of threat. May (1977) argues that anxiety is aroused when something valued essential to one's existence and security is threatened. Some theorists have attempted to distinguish fear from anxiety. Typically, fear is said to be a reaction to a specific, readily identified, usually external danger; anxiety, on the other hand, is said to be a reaction to an anticipated danger which is unspecific, vague, or objectless (e.g. Freud, 1936; Jones & Jakob, 1981; May, 1977). Numerous authors use the two terms synonymously (e.g. Graham & Conley, 1971; Hewitt, 1984; Travelbee, 1971) and some theorists argue that there is no significant difference between them (Epstein, 1976; Lesse, 1970; Levitt, 1980). Clearly, in this study the two reactions co-existed. Participants conveyed a sense of anxiety about the unknown course of their illness while also expressing specific fears in relation to possible death or a heart attack. Therefore, both terms were utilized to describe their reaction to the threatening nature of their illness. The third major reaction of the participants to their illness was that of vulnerability. Again, this reaction was felt in relation to the threats associated with coronary artery disease. 141 The participants described how they felt susceptible to illness-related mishaps. Aspects of life which they before took for granted now created major concerns for them. They also conveyed some of the precautions they took to avoid disasters, such as not driving at night-time, not camping in remote areas, and not carrying cash in public places. Such precautions seemed to reduce their sense of vulnerability. Expressions of vulnerability were always linked to uncertainty and a sense that they could not depend on their heart's ability to function. They seemed to be describing a loss of trust in their own body. Mullen's (1978) statement that "sudden death may be the consequence of overstepping [an] unclear boundary line of safety" (p. 298) supports this researcher's finding regarding the precarious and uncertain situation in which the participants perceived themselves to be. The concept of vulnerability has been used to describe the patient who is rehabilitating from a myocardial infarction (e.g. Dimond & Jones, 1983). However, scholarly efforts to operationally or investigate this concept in the context of cardiac illness are lacking. One exception, however, is Pranulis (1986), who has recognized vulnerability as a central concept of relevance to the care of individuals with coronary artery disease. According to her, vulnerability is a "condition of the human organism that is characterized by a threatened loss [of] the person's biological, psychological, and/or social Integrity" (p. 147). Her observation of the importance of this concept for the care of the cardiac patient and her definition of it support this researcher's finding that vulnerability is a common reaction to coronary artery disease and also that this reaction is linked to threat. Cooino with the Illness In this study, all participants described coping with illness as a significant part of their experience. The concept of coping has already been introduced in the first chapter of this thesis when the Lazarus theory of stress and coping was reviewed (Lazarus, 1966; Lazarus & Folkman, 142 1954b). The reader win recall that Lazarus conceptualizes coping as cognitive and behavioural efforts to manage a stressful situation. He further maintains that coping efforts can be anticipatory or reactive in nature and that they function in two ways: to manage or alter the problem that is causing the distress (problem-focused coping) and to regulate the accompanying stressful emotions (emotion-fxused coping). His conceptualization of coping has significance for this study's findings regarding coping. Mention of this will be made throughout the discussion of coping not only in this, the illness facet, but also in the surgery and wait facets. In this study, it was found that participants used a variety of strategies to cope with their illness. The major categories of coping included: taking action, seeking information, making sense of the illness, and thinking positively. These will now be discussed. Taking action was conceptualized to represent the various ways that the participants attempted to problem solve in relation to their illness. These strategies to take action were representative of the problem-focused type of coping described by Lazarus. Additionally, Lazarus and Launier (1978) maintain that direct action can be employed for several reasons: to overcome a past loss, to prepare for the future, to alter oneself, or to change the environment. The specific strategies for taking action were described as maintaining/achieving healthy lifestyle practices, taking one day at a time/ having a daily routine, monitoring the illness, and seeking and accepting support. All of these strategies were undertaken to maintain a sense of control over the illness and to carry out daily activities as best as possible. The strategy of maintaining/achieving healthy lifestyle practices was a universal way that the participants coped with their illness. The reason that the researcher conceptualized these two strategies together was that not all participants were engaged in making lifestyle changes during the time of their wait. The three individuals who had longstanding illness had already made changes in their lifestyle prior to the waiting time. Another individual who had recently had a 143 myocardial infarction said that the topic of lifestyle change was a bit of a "sore issue" with him. This individual believed that he already was following healthy practices before his heart attack. He reported how during his hospitalization for his heart attack the nurses kept asking him to watch "the videos" (about lifestyle change). Such actions were a source of annoyance for him. His comments clearly indicate the importance of not assuming that everyone will have major lifestyle changes to make following an acute cardiac incident, of performing individualized assessments of learning needs prior to commencing teaching, and of reinforcing healthy practices already in place rather than always putting the teaching emphasis on the changes that will have to be made. The specific aspects of lifestyle management that the participants discussed were: exercise, diet, smoking, stress, and symptom control. These are fundamental aspects of lifestyle management for the person with cardiac illness and little discussion will be m8de here. However, It Is useful to note the areas which were problematic for the participants. Specifically, exercise, weight control, and to a much lesser extent, smoking, presented as problem areas. That problems exist in relation to appropriate activity level while awaiting surgery has also been reported by Coombs (1987). The problem with weight control was enhanced for some participants by a low exercise tolerance secondary to their coronary artery disease. The harmful psychological effects of being overweight were obvious from their accounts. Not only did they feel depressed about being overweight, they also worried that this might have a negative impact on their recovery from surgery. Clearly, they indicated that they needed assistance to find acceptable ways to lose weight. Total abstinence from smoking presented as a problem for two of the participants. For one participant, this was interrelated with her weight problem. It also appeared that a few participants missed smoking because of the relaxant effects it had for them. The finding that all participants were actively engaged in managing symptoms 144 demonstrated their need to maintain control over their illness, it was interesting to rind that participants developed their own unique ways of dealing with symptoms and that nitroglycerine was rarely used as the first or sole line of defense against angina. It seemed that some participants had an aversion to being any more dependent on medications than was absoutely necessary. Perhaps their ability to manage angina without using nitroglycerine gave them a stronger sense of control over their illness. In this study, the strategies of talcing one day at a time and having a daily routine emerged as ways the participants carried out daily activities despite the ill-effects provoked by their illness. These strategies seemed to help them maintain some sense of control and also helped them conserve their energy. By recognizing times during the day when they had the most energy or by arranging to do activities on short notice when they felt well, they were able to make the best use of their time in satisfying ways. Uncertainty was a major factor in the need to take one day at a time. This W8S because it was often impossible to predict from one day to the next how they would feel. Therefore, the uncertainty surrounding the occurrence of illness-related symptoms often made long range planning impossible. Teking one day at a time while awaiting CABO surgery was also reported by Yamada (1984). She stated that the clients she interviewed were involved in coping with their illness on a day-to-day b8sis. The strategies of taking one day at a time and having a daily routine resemble that of "pacing" described in the literature pertaining to chronicity. Wiener (1984) describes pacing as a means of "maintaining an uneasy equilibrium between the abnormalization and normalization" (p. 94) in one's life. Wiener further notes, as did this researcher, that uncertainty is a major contributing factor in the need to use the strategy of pacing. Miller (1983a) states that "pacing results from the individual's understanding limitations and abilities and appropriately engaging in activities over a time span that satisfy ego needs without causing 145 undue exhaustion" (p. 20). These definitions provide support to this researcher"s findings regarding the strategies of taking one day at a time and having a daily routine. In this study, the strategy of monitoring was employed by all participants to keep watch for possible changes in the progression of their illness. In order to do this, they developed ways for testing their endurance and constantly observed for changes in their activity tolerance over time. It seemed that this strategy enabled the participants to sense that they had some control over their illness through estimating its current stage and, more importantly, whether it was stable or deteriorating. Participants were particularly alert to signs of deterioration because they believed deterioration should be reported to the doctor to give their case a more urgent priority for surgery. Mullen (1978) has found that persons with cardiac illness need to sense confidence in their ability to read cues about their illness. She further reports that this ability is needed to evaluate the degree of impairment, to gauge progress, and to anticipate and recognize potential disasters. The efforts made by the participants in this study to monitor their illness are reflective of her observations. Seeking and accepting support was found to be another strategy used to take action to cope with illness. Seeking support is commonly identified as a way of coping with the effects of illness (e.g. Moos & Schaefer, 1984). In this study, however, a number of the participants indicated that they did not actively seek support but that they did accept it when it was offered. Choosing to accept such offers was therefore conceptualized as a way that the participants took action to deal with the ramifications of their illness. This strategy was used not only to cope with the losses of physical strength and endurance but also the psychological ramifications of the illness-related losses. The strategies of seeking and accepting support thus had the dual goals of altering the problems imposed by illness and dealing with the consequent emotions. 146 The finding that seeking information W8S a strategy used to cope with Illness Is supported in the literature. Lazarus and Launier (1978) suggest that information seeking is used to provide a basis for action to change a situation or to make a person feel better by making the situation seem more under control. They also state that information can be used to interpret the past and to read the future. Some of the participants in this study explicitly stated that they sought Information to increase their feelings of control. By acquiring information which they could act upon, participants perceived that they were doig something to benefit their health. Also, information enabled them to be prepared for potential occurrences. The reasons the participants provided for seeking information are consistent with those suggested by Lazarus and Launier. In this study, only half of the participants were actively engaged in this strategy while waiting. Any number of reasons could have accounted for this. Those who did seek information may have regularly coped in that way. Some individuals did seem persistent in their efforts to keep up with progress in the cardiovascular field. Other participants seemed to Indicate that they had obtained all of the information they needed about their illness and its management in the past. Alternatively, the awareness that their illness needed CABO surgery may have prompted some individuals to seek additional information about it during the waiting time. That some participants had questions but had not attempted to have them answered may have been because they either did not know where to direct their questions or they were content to leave them unanswered. It was noteworthy that participants infrequently used the health care system as a resource for information. One participant had obtained some information from the Heart Foundation and another had attended a session of public seminars offered by one of the local hospitals. However, books obtained from a library and/or a bookstore were the most frequently used sources of information. A few participants felt that educational services were lacking and that members of 147 the health care team should have Informed them about available community resources. It appeared from the accounts that most of the participants had informational needs about illness and that those who obtained answers to their questions did so in an independent manner with little or no investigation of their needs on the part of health care professionals. This study found that most participants were actively engaged In a process of making sense of their illness while they waited for surgery. They examined what might have caused it, why it had deteriorated to its current state, how it might have been prevented, and what its implications might be for their future. It was interesting that the individual who had the least symptoms and who was the most physically active used this strategy the most. It is probable that an absence of major symptoms made it more difficult for him to accept the reality of the illness. Therefore, he was constantly searching for clues which could convince him that he did have the illness end that there were valid reasons for its existence. The finding that individuals used their waiting period to make sense of their illness has also been reported by Yamada (1984). She found that prior to CABO surgery, clients engaged in self-reflection upon their illness in order to interpret its meaning for their lives. Similarly to the participants in this study, the clients in her study searched for causes of their coronary artery disease while waiting. The strategy of making sense of the illness also resembles Rakoczy's (1977) finding that hospitalized individuals awaiting cardiac surgery pass through a phase of "self-reflection" when they try to explain the cause of their problem and mourn their loss of control and health. Several authors have reported that the individual who has had an acute cardiac episode typically engages in reflection upon the Illness to explain its significance for his or her life (e.g. Mullen, 1978; Scalzi, 1973). This strategy of making sense of the illness is analogous to the coping skill of "logical analysis" described by Moos and Schaefer (1984). They state that when "life's happenings seem 148 capricious and uncontrollable... it often is easier to manage if one can rind a general purpose or pattern of meaning in the course of events" (p. 14). Extrapolating from their proposition to the current stud/, it would appear that the participants engaged in making sense of their illness in order to make the situation seem more tolerable to them. The finding that participants used the strategy of thinking positively to deal with their illness is also supported in the literature. In this study, participants searched for reasons why they could feel fortunate or "lucky" about their situation of having coronary artery disease. This is similar to the coping skill of "cognitive redefinition" defined by Moos and Schaefer (1984). They postulate that cognitive redefinition enables an individual to accept the reality of a situation by restructuring it to find something favourable. They suggest that the strategies of reminding oneself that things could be worse and thinking of oneself as well off in comparison to other people are ways that individuals redefine their situation. According to Lazarus and Launier (1978), the cognitive strategy of thinking positively is a direct effort to regulate unpleasant emotions by making a person feel better. The viewpoints of these theorists support the findings regarding the thinking positively strategy found in this study. This, then, concludes the discussion of the illness facet of the experience of waiting for CABO surgery. Discussion focused upon the meaning of the illness, the reactions to it, and the coping strategies used to deal with it. Support for the study's findings was provided by both research- based and theoretically oriented literature from both the general health and cardiovascular fields. The Suroerv Facet Meaning of the Surgery It was found in this study that the prospect of CABO surgery generated appraisals of threat by all of the participants. This is congruent with the findings of other researchers that CABO 149 surgery represents a threatening and stressful event (Carr & Powers, 1986; Gilliss, 1984; Pieper et al., 1985). That there was considerable variability in the frequency and intensity of surgery-related thoughts among and within the participants was due, perhaps, to the differing ongoing appraisals of surgery and strategies for coping with it. For example, some of the individuals who said they thought little about surgery appeared to have already made an appraisal of threat and were coping with that threat by avoiding thoughts of surgery. The concept of imminence (Lazarus & Folkman. 1984b) could account for one participant's explanation of why he did not spend a great deal of time thinking about surgery. According to Lazarus and Folkman, the more imminent an event is, the more intense its appraisal becomes. It Is possible that this participant, who stated the event seemed "too far away," regarded his estimated date for surgery to be more accurate than did the other participants. It was found that the act of appraising the threats associated with surgery was an ongoing process throughout the waiting period. Participants in this study appraised and reappraised specific, concrete threats of significance to them. Associated with surgery were threats to life, physical and/or mental functioning, body comfort, body image (as related to the chest scar), and future employment. These threats are similar to the preoperative concerns of CABG patients Identified by King (1985). King found that most concern centred around future plans, life, bodily integrity, and social roles. All of the threats appraised by participants in this study could be incorporated under King's categories of concerns. Other researchers have reported similar threats to be associated with CABG surgery. Rakoczy (1977) found that fear of impairment, the seriousness of the surgery, and death were commonly verbalized threats of patients in the hospitalized period before cardiac surgery. Similarly, Radley and Green (1985) reported that fears surrounding the surgical procedure and its consequences, including potential death, were prevalent during the presurgery phase. 150 An opposite appraisal or surgery as a prospect or gain was also made by participants. Host of them viewed surgery 8S a necessary procedure which not only could sustain life by preventing a myocardial infarction or death, but also could provide a better quality of life than they currently had. Oilliss, Sparacino, Oortner, and Kenneth (1985) have also found that improved quality of life, fear of disability, and the desire to continue living are major motivators in choosing to have surgery. In this study, gain W8S primarily appraised in relation to re-establishing some or all elements of normal life, particularly, normal bodily functioning, employment, social functioning, and leisure functioning. Expectations for normal bodily functioning Included restoration of energy supply and symptom relief without dependency upon medications. Other researchers have documented similar expectations of surgery including the following: symptom relief, prevention of illness-related complications, re-engagement in specific activities, and return to normal (Cozac, 1985; Radley & Oreen, 1985; Yamada, 1984). A finding unigue to this study, however, was that psychological benefits were also anticipated from surgery. In particular, participants expected that the psychological stress associated with feeling vulnerable to an illness-related mishap would be reduced following surgery. Also, there were hopes for improved mood and restoration of a sense of control of life. It Is probable that the prevalence of gain appraisals in the psychological realm arose primarily from the devastating psychological effects of waiting for surgery. Although participants appraised expectations of surgery in terms of regaining elements of normalcy, there were, as previously Indicated, two distinct meanings attached to normalcy. Individuals who had been diagnosed as having coronary artery disease within the previous year appraised gain primarily in terms of returning to the "normal" self they had been before onset of the illness. The individuals with longstanding cardiac illness made gain appraisals in relation to 151 elements deemed essential to normal daily functioning, such as absence of angina, Increased endurance for activities, and reduced dependency on medications. It is probable that the duration of the illness could account for this difference. Because the latter group had lived with coronary insufficiency for eight to ten years, it is more likely that they understood their illness in terms of chronicity. Additionally, because of the natural aging process that had occurred In the elapsed time, it would have been unrealistic for them to expect the surgery to restore them to their pre-illness state. In the current study, then, CABG surgery was appraised as representing both a threatening and a gainful prospect. Morgan (1971) also reported findings which suggest that individuals awaiting cardiac surgery form dual appraisals of it. Morgan observed from interviews conducted with patients awaiting valvular surgery that their approach to the operation was often "a blend of anxiety about the surgery itself .. . [and ] pleasure that something could be offered . .. with definite prospects of Improved health afterwards" (p. 42). Although the participants in this study did not use the word "pleasure" in relation to their expected gains, one individual did use the word "relief" to describe her reaction to the news that surgical intervention finally was being recommended to treat her angina. The finding that participants appraised surgery as a last resort is supported by other researchers (Cozac, 1985; Rakoczy, 1977; Yamada, 1984). Even though many of the participants sought information about alternative therapies, the appraisal that there was no option to CABG surgery remained dominant throughout the wait. When the risks of surgery were compared to the probable deterioration of the illness and the possibility of death from a myocardial infarction, the decision to proceed with surgery seemed to be the obvious one. Psychological/Emotional Reactions In this study, participants often recalled that their initial reaction to the news that CABG 152 surgery was necessary had been one of shock, upset, or depression. These reactions, especially shock, are typical of those documented in the literature. For example, Rakoczy (1977) found that patients described their initial response as being one of disbelief, anxiety, or shock. In the current study, however, other reactions were also found. One participant described her reaction as being a mixed one of both relief and fear. Several other participants described their emotional reactions as being minor because the news of needing surgery came as no surprise to them following a gradual series of diagnostic steps. These latter reactions are not congruent with the prevailing professional viewpoint that the news of needing CABO surgery typically creates a crisis situation and the accompanying shock reaction (eg. Oilliss et al., 1985). In this study, fear and anxiety were found to be the prevailing reactions to the prospect of surgery. Fear and anxiety, in relation to the threats inherent in open heart surgery, are repeatedly reported as universal reactions to the prospect of open heart surgery (e.g. Blacher, 1987; Cohen, 1982; Kennedy & Bakst, 1966). That the surgery was being performed on the heart contributed to the participants' fear. Recall that one participant stated: "Then there's the natural feer with somebody mucking about with my heart." This finding is consistent with Blacher's (1987) thesis that surgery performed on the heart is markedly different from that performed on other body parts. The second major reaction to the prospect of surgery was that of ambivalence. It appeared that ambivalence resulted from making the two different appraisals of surgery, that is, potential gain and, simultaneously, potential loss. Although the participants stated that they immediately agreed with medical advice to proceed with surgery, most participants, at some point or points throughout their wait, questioned the necessity of their surgery. It is probable that the wait provided them with time to reflect upon their initial decision and to consider that there might be an option to surgery. Some participants especially questioned the need for surgery during the 153 times when they were asymptomatic. The presence of symptoms undoubtedly served as a stimulus that reminded them of their need for surgery. In another way, participants demonstrated their ambivalence by seeking information about alternatives to surgery. Doubt was always associated with this ambivalence toward the need for surgery. Some support for this finding exists In the literature. As early as 1966, Kennedy and Bakst reported thet ambivalence to open heart surgery was a common reaction. They found ambivalence to be correlated with a high incidence of operative mortality and postoperative complications. Blacher (1987) observed that "the decision as to whether an operation should be done or not is itself one fraught with a great deal of ambivalence" (p. 46). Cozac (1985) found that ambivalence was a common reaction of spouses to the knowledge that their mates required CABO surgery. It is significant to note that the reaction of ambivalence has been observed for over two decades despite improvements in surgical technique and substantially reduced risks. It is probable, however, that current reactions of ambivalence are due in part to recent developments in the area of alternative therapies to CABO surgery. In this study, ambivalence also was found to be associated with the desire to proceed with surgery. This was expressed as "wanting to get it over with" while simultaneously "dreading that day coming." Although there was ambivalence in this regard, the desire to "get in" dominated. This was probably because the threats associated with surgery were appraised as less potentially harmful that the threats of waiting with a life-threatening illness. Edwards (1987) found that parents of a child awaiting corrective heart surgery expressed similar ambivalence about proceeding with their child's surgery. Parents in Edwards' study were reported to fluctuate "between wanting the surgery 'over with' as soon as possible and wanting to delay it as long as possible" (p. 145). Similarly to this researcher's finding that the desire to be admitted for surgery was predominant, Edwards also found that "wanting to get the surgery 'over with' was a 154 stronger feeling than wanting to delay i f (p. 146). Coping with the Prospect of Suroerv In this study, it was found that all participants actively engaged in coping efforts to confront the prospect of surgery. Coping that is directed at a future event is often referred to as "anticipatory coping" (e.g. Folkman & Lazarus, 1984b). Such coping efforts enable an Individual to plan for the future event and work through some of the difficulties in advance (Folkman & Lazarus, 1984b). The categories of anticipatory coping strategies utilized by participants in this study were: seeking information, preparing for surgery, and thinking positively. These coping strategies were aimed at decreasing the threat of surgery and increasing the prospect of gain. In using these strategies, the participants were also attempting to decrease their anxiety and ambivalence toward surgery. Seeking information in relation to the prospect of surgery was a strategy used by all participants in this study. Although this strategy was sometimes used to determine if there was a way to avoid the threat of surgery, it was most often used as an attempt to read the future. This helped the participants to prepare for what W8S to come. Obtaining information about the experience of CABO surgery had the effect of making the situation seem more under control. This helped the participants to feel better about the prospect of their surgery. Through seeking information, individuals were able to find out about the operative procedure, the associated risks, the actual experience of surgery, the reputation of the surgeon, and alternative treatments to surgery. Sources of information included: lay and professional individuals, literature, and media reports. Several other researchers have reported the presence and usefulness of this coping strategy for the CABG surgery candidate (King, 1985; Yamada, 1984). King (1985) also found that information seeking was a universal coping strategy of the preoperative period of CABG 155 surgery. Although it is unclear from King's report whether or not subjects reported coping strategies used before entry to hospital in addition to those used in hospital, the combined results of that study and the current one seem to indicate that seeking information is a valuable coping strategy used throughout the entire preoperative period. In the same way that participants in this study sought information to find out about the experience of surgery, subjects in King's investigation did so to "find out what one had to go through and how it felt" (p. 581). In the current study, "veteran" patients were the most sought out and valued sources of information about the experience of CABO surgery. It appeared that individuals who had survived the experience were regarded as the most accurate and legitimate sources of the needed information. The findings of other researchers support this observation (Miller and Shada, 1978; Coombs, 1987). All of the participants had conversed with several individuals who had had heart surgery and/or acquaintances who knew people who had had this surgery. The prevalence of this form of Information seeking prior to open heart surgery has been reported by other researchers (King, 1985; Miller & Shada, 1978; Rakoczy, 1977; Yamada, 1984). Most participants had made their own firsthand observations of individuals recovering from CABO surgery. This helped them to validate the success of the operation and to positively compare their own situation with that of others. Wright and Shontz (1968) refer to this validation process as "consensual validation." From their theoretical perspective consensual validation is important because it provides grounds for hope. The participants in this study seemed to generate hope from their observations of the success of others' CABO surgery. Through comparing themselves with others they were encouraged that they could also endure the experience end have a successful surgery. King (1985) reported a similar finding that preoperative patients sought information to make comparisons with others. She additionally stated that this information helped ease their minds about the prospect of surgery. 156 Seeking information about alternatives to CABG surgery was a strategy used by most participants to deal with the threat of surgery. Through this strategy, participants investigated whether there was a viable alternative to surgery. Usually, the end result of this strategy served to reduce some of their ambivalence toward surgery by confirming that there was no alternative. This finding regarding the tendency to seek information about alternatives is markedly different from that of Gilliss and associates (1985). In their study, none of the 71 patients interviewed after CABG surgery reported that they had considered alternatives to surgery. The researchers commented that angioplasty was not widely available at the time of their investigation. In contrast, at the time of the current study, alternative therapies for coronary artery disease were not only being rigorously tested and used, but also widely reported in the media. It is probable, therefore, that differences in availability and awareness of alternative treatments could account for the different findings. The participants in this study used the seeking information strategy to find out about the success of CABG surgery and to acquire a basic understanding of what the surgical experience would entail. However, there was considerable variation in the depth and content of the desired information and the sources from which it was obtained. Some participants seemed to be active information seekers. They wanted some information about all aspects of the experience, including the operative procedure, and independently sought this information, usually from books and other literature. It appeared that information helped these individuals to feel prepared for the upcoming surgery. Additionally, understanding what would be experienced and how the surgery would be performed seemed to give them a sense of control over their situation. Other participants clearly stated that they did not wish to know about the operation as they had no control over what would be happening then anyway. These individuals almost always remarked that they would rather know what they could do to facilitate their recovery. They perceived that 157 kind of Information to tie something upon which they could act to help their situation. The message that the participants seemed to give the researcher was that they wanted to have some control over the information they received and when and how it was received. It appeared that each participant had unigue informational needs. Rakoczy (1977) found, as did this researcher, that all patients do not require nor desire a great deal of information in the preoperative period. Miller & Shada (1978), however, reported that patients having heart surgery desire full and detailed information on all aspects of their conditions and treatments. It is possible that these different findings may be related to the timing of data collection. In both the present study and that of Rakoczy, the data were collected during the preoperative period. Miller and Shada, conversely, collected their data during the postoperative period. It may be that prior to a threatening event, knowledge is feared because it might act as a further source of anxiety. Lazarus (1981) provides information which lends some support to this hypothesis. According to Lazarus, "the regulation of emotional distress often requires accepting ambiguity (the obverse of information)... At times such ambiguity or uncertainty is even a balm rather than a source of anxiety" (p. 200). Therefore, fe8r of the unknown may have seemed less anxiety-provoking than fear of the known. This may account for the finding that some participants preferred to remain uninformed about the surgical procedure. There frequently was, however, a tone of ambivalence to the participants' comments regarding informational needs. This was evidenced by fluctuating between wanting to know and preferring not to know. Statements to the effect that information about surgery "could be scary" but also "nice to know" and that "there's no need for me to know" but "it's interesting" convey this ambivalence toward information. The finding that two participants explicitly stated that they did not need to know about the operative procedure and later in the same interview asked the researcher questions about the procedure also demonstrated such ambivalence. The conflict 158 created by wanting to know while simultaneously wanting to protect oneself from stressful information was apparent. How best to intervene in such a situation is a challenge for health care professionals. The second category for coping with the prospect of surgery was conceptualized by the general heading of preparing for surgery. Subsumed under this heading were the strategies of visualizing, putting affairs in order, preparing physically, and seeking/accepting support. These strategies represented deliberate efforts to prepare both physically and mentally for upcoming surgery. Visualizing was one way that some of the participants attempted to prepare for surgery. The individuals who used visualizing in this study seemed to do so in an effort to make sense of what the surgical procedure would entail and to imagine what they would experience. It was found that knowledge and past experience affected the use of this strategy. Past experience with hospitalization was used to visualize and could evoke pleasant or frightening images of the upcoming experience. When knowledge was deficient, it was difficult to formulate mental images that could facilitate preparation for the event. The role of information in facilitating preparation for an event has been reported by Janis (1958). He found that providing information to preoperative patients facilitated a process of mental rehearsal through which they could develop reality-based expectations and make plans for coping with the threat. The visualizing strategy identified in this study resembles that labelled "imagery-rehearsal-vigilance" in an investigation by King (1985). King found that this strategy was minimally used during the preoperative period and suggested that this was due to unfamiliarity with the event. King's suggested reason for the low use of this strategy is similar to this researcher's conclusion that the ability to use the visualizing strategy is limited when there is an absence of meaningful information. 159 The finding that participants put their affairs In order before surgery has been reported elsewhere (Borders, 1985). This strategy indicated that the participants had acknowledged the possibility of their death and made preparations for its potential occurrence. Other ways that participants made preparations for surgery included preparing physically and seeking/accepting support. It was remarkable that the participants indicated a willingness to do whatever possible to increase their chances of a successful recovery. However, they usually indicated that they knew of nothing more that could be done besides following their healthy lifestyle practices. Also, symptoms usually limited the extent to which they could perform physical exercises. With regard to the seeking/accepting support strategy, it was interesting to find that the participants who lived alone had made options for discharge accommodation early in their waiting periods. Perhaps this was because the date of surgery seemed so ambiguous that they felt they must be ready to be called in anytime and therefore needed to have these arrangements in place. The thinking positively strategy W8s used by all of the participants. It appeared to be an effort to decrease the appraisal of threat and strengthen that of gain. It also seemed to help the participants accept their need for surgery. Lazarus and Folkman (1984b) support this observation that positive thinking reduces threat. They maintain that perceptions of threat can be reduced through cognitive coping efforts which help one to see a situation in a more positive light. The specific strategies that were delineated in the category of thinking positively were: emphasizing the positive, hoping, making positive comparisons, rationalizing, and trusting. These strategies seemed to be closely related in that they all had the effect of generating positive thoughts and hope. Most of the discussion here will focus on the strategies of hoping and trusting. All participants in this study made hopeful statements about regaining normal health following surgery. A number of theorists have emphasized the importance of hope during times of stress (Dufault & Martocchio, 1985; Horner, 1970; Lange, 1978; McOee, 1984). As Lange 160 (1978) states: "hope makes life under stress tolerable; it is the 'light at the end of the tunnel'" (p. 171). Korner (1970) conceptualizes hope as a method of coping and maintains that its purpose is to ward off despeir. Through warding off despair, hope enables an individual to deal with the uncertainties and discomforts of the present by anticipating a more gratifying future (Korner, 1970; Lange, 1978). When these ideas are applied to the findings of the current study, it can be seen that hoping helped the participants to deal with the threats inherent in CABO surgery by enabling them to anticipate a successful outcome. Research has demonstrated that individuals sustain hope by conducting a mental exercise known as "reality surveillance" (Wright and Shontz, 1968). It is through reality surveillance that an individual searches the environment to find a realistic base in which to ground hope. A number of methods for reality surveillance have been identified by Wright and Shontz (1968) and expanded upon by Lange (1978) and Miller (1983b). Several of these methods are evident in coping strategies used by participants in this study. For example, this researcher's conceptualization of the strategies of rationalizing to reduce the risks associated with surgery and making comparisons to discount information about unsuccessful cases are similar to Lange's category of "denial of negative possibilities." The strategy of making positive comparisons is analogous to Miller's categories of "comparing self with other individuals or groups" and "reviewing assets." For example, the participants in this study identified personal assets that they had over others such as young age and low blood pressure. They also compared themselves with others in order to believe that they too could expect to have a successful surgery. Utilizing the concept of reality surveillance, then, several of the identified coping strategies in this study could be viewed as representing efforts to survey reality and thereby foster hope. Trusting was also a universal strategy used by the participants in this study. Although many participants expressed doubt about their need for surgery 8t some point during their wait, 161 they also trial to have confidence In the medical advice and care they received. Trust was most strongly expressed in relation to the expertise of their surgeon. Many of the participants related that the interview with the surgeon had increased their sense of confidence and trust in him. It seemed that some degree of bonding with the surgeon had occurred at that time. Trust in the surgeon and cardiologist was also conveyed through the participants* desire to have their surgery performed "at home" (rather than in another city) where the doctors "knew their case." It appeared that trust in the surgeon was important for facilitating a positive affect toward surgery. It helped to generate confidence and hope that the surgery would be successful. Additionally, trust seemed to relieve some of the fear associated with the surgery. The importance of having trust in the surgeon during the preoperative period of open heart surgery has been reported by other researchers (Rakoczy, 1977; Yamada, 1984). Yamada also found, as did this researcher, that individuals awaiting CABO surgery frequently relied on information from others to confirm their trust in their surgeon's abilities. Before ending this discussion of the surgery facet it may be useful to more closely compare this researcher's findings with those of Rakoczy (1977). Although Rakoczy's study was conducted during the 72 hours immediately preceding the day of surgery and included patients scheduled for CABO surgery or valvular surgery, many commonalities are found in the two studies. Several of these similarities have been noted already. For example, both researchers found that individuals awaiting surgery typically express confidence or trust in their medical care; make references to successful "veteran" patients; analyze, or reflect upon, their illness; and verbalize expressions of hope for recovery. Additionally, in both studies, fear was found to be a prominent emotional reaction of individuals waiting for surgery. A major difference between the studies, however, relates to the timing of these thoughts, feelings, and actions. In Rakoczy's study, patients typically passed through a series of phases: 162 "confrontation," "self-reflection," "resolution," and "countdown." Each of these phases was manifested by particular thoughts and feelings. In the current study, many of the behaviours, thoughts, and feelings representative of Rakoczy's first three phases were described by participants during both of their interviews. In other words, they did not convey that they were passing through such phases, but rather, Indicated how they lived with many of these thoughts and feelings on a daily basis. It is difficult to account for this difference. It would appear that the patients in Rakoczy's study did not have prolonged waits for surgery although specific information to this effect was not provided. A possible explanation, however, might be that the prolonged wait of the participants in this study provided them with time to constantly review and reflect upon their situation. The Wait Facet Given the almost total absence of investigation into the experience of prolonged waiting before CABG surgery, discussion of this researcher's findings in relation to other researchers' findings is limited. Consequently, much of the discussion of this facet will be accomplished by drawing comparisons with general literature. In particular, the writings of the few nursing authors who have addressed the phenomenon of waiting will be considered. Hearting of the Watt All participants in this study were uncertain of the date of their surgery. Some had been given a rough estimate; others had been given no timeframe whatsoever. However, the individuals who waited without any timeframe seemed to express the most uncertainty about the potential duration of their wait. It seemed that having no reference point with which to mark their wait made them feel extremely helpless to plan their lives. They waited daily with the hope that their call to report for surgery would come. It appeared, therefore, that having no estimated date for surgery was more stressful than having some estimate, even if it was a vague one. 163 The wait was appraised as a distressing aspect of the total experience of waiting for CABO surgery. Not only was the wait regarded as a barrier to achieving the anticipated gains of surgery, it also was perceived as accentuating the losses and threats associated with illness and the prospective surgery. In addition it was found that the wait engendered losses of its own. These will now be discussed. The losses associated with illness were sustained, if not exaggerated, by the wait. Potential or actual financial losses were appraised by all of the participants who were nonretired. It is probable that this concern was not raised by the retired participants because the wait did not affect their personal financial status. Pieper, Lepczyk, and Caldwell (1985) also found that waiting was associated with financial concerns. In this quantitative study, individuals scheduled for CABO surgery rated waiting as having a negative impact on employment outside the home and family budget. The study's sample was comprised of men aged 40 to 64 years. Subjects therefore shared the similarities of age and gender with the participants in this study who had financial and employment concerns. In the present study, participants described a number of specific losses incurred by the wait. Loss of freedom snd related to that, loss of vacation, were commonly appraised. The finding that loss of freedom contributed to feeling tied down was probably related to the uncertainty of when the operation would be performed and the threat of missing one's "turn" for surgery. That some participants felt compelled to stay home on a daily basis while others did not, can perhaps be explained in terms of trust and/or available information. The participants who had been informed that they would be called more than once if necessary and those who had faith that this would be done felt free to leave their homes during the day. It appeared that the two individuals who abandoned the act of staying home during the day did so to re-establish some control in their life and increase their sense of freedom. 164 Loss of valuable time of life was also appraised. Most participants described their life as being, to some extent, on hold. For these individuals, the waiting time was equivalent to wasted time. It appeared that those participants who spoke less about the wait being a loss of time had had fewer changes in their life during their waiting period. In other words, the more losses engendered by waiting, the more likely it was that the wait was appraised as a loss of time. For most participants, the wait was associated with a loss of dignity. This was related to being placed in the demeaning situation of having to wait for surgery and to being shown so little respect and concern while waiting. Because contact from the health care system was virtually nonexistent, the participants felt "forgotten" and sensed that no one cared about them. Sometimes when they contacted their surgeon's office, they felt they were treated in an undignified manner or pacified with assurances that they would soon have their surgery done. It seemed that these actions served to reinforce their sense of indignity and erode their trust in the surgeon and his receptionist. No studies were found in the literature with which to corroborate the above findings pertaining to loss. There were, however, literary works which provided some support, particularly in relation to the loss of dignity associated with waiting. Thorne (1985), in conducting an informal survey about the experience of awaiting care in a clinic or emergency department, found that patients typically felt ignored or unfairly treated while waiting. Furthermore, patients perceived that others' efforts to pacify them served only to compound the stress of waiting. Hein (1980) also asserts that indignity and loss of self-esteem are typically associated with waiting. According to Hein, waiting frequently produces feelings of abandonment and can ultimately destroy trust and rapport in a relationship. Leavitt (1982) maintains that waiting without a timeframe or explanation of the need for the wait is devaluing to the self-esteem. Additionally, Leavitt contends that the "longer the wait, the more threatened the 165 self-esteem, the more devalued a person feels, and the more anxious and angry or helpless and defeated he [or she] becomes" (p. 78). All of these statements concur with the findings of this study. It would appear, then, that indignity is a common theme of the experience of waiting for health care. Therefore, the participants in this study clearly appraised the wait as primarily representing a loss. This contrasts with the finding of Pieper, Lepczyk, and Caldwell (1985) that men with longer waiting periods rated waiting for CABG surgery as having a positive effect on life. They suggested that those who had longer waiting periods perhaps had time to seek the information needed to cope with impending surgery. In this study, all participants, regardless of the duration of their wait, perceived to varying degrees that the wait had primarily negative effects. This study also found that many participants felt they had lost interest in aspects of life and that they did not get pleasure from their usual activities. For most of them, the wait was regarded as representing wasted time that could not be used productively or pleasurably. Again, this contrasts with the finding of Pieper and associates (1985) that subjects in their study rated waiting as having a strong positive effect on interest in life. A probable explanation for these different findings was the marked difference in the waiting periods of the two groups. Subjects in the study by Pieper and others had waited only 7 to 76 days (mean=32.44) in comparison with waits of 11 weeks to 11 1/2 months in this study. Also, Pieper and others stated that waiting periods typically ranged from 1 day to 6 weeks. Consequently, having to endure or anticipate a prolonged wait of uncertain duration did not appear to be an issue for the subjects in their study as it was for participants in the current one. The appraisal of threat of loss was also associated with waiting. The threat of a heart attack or death was accentuated by having to wait for surgery. The knowledge that their illness h8d progressed to the point where it needed CABG surgery and the uncertainty of when that surgery 166 would be performed seemed to substantially Increase these perceptions of threat. A weak theme of gain was found in the accounts of two of the participants. It is probable that the intensity of the losses associated with the wait and the life-threatening nature of the illness contributed to the low incidence of gain appraisals. It was interesting to find that one participant had appraised the waiting period as representing time which could be used constructively. This individual, like most of the other participants, had sustained many losses from illness. Indeed, his total life had been disrupted by the event of his myocardial infarction. Yet, somehow he was able to transcend his situation of loss and discover an opportunity for gain. His educational preparation in the social sciences and his work experience with counselling may have contributed to his ability to make the waiting situation a "positive thing." Psychological/Emotional Reactions In this study, helplessness was found to be a universal reaction to waiting. Associated with this was an appraisal of the wait as a "no control" situation. The participants felt helpless to do anything to change their situation of having to wait for surgery. The theme of helplessness was probably intensified by having a life-threatening illness which eroded their sense of control and also by confronting a surgery over which they had little control. However, most often when the participants spoke of helplessness it was directly in relation to the lack of control they had over their situation of waiting. There is theoretical support for this finding that helplessness is linked to a perception of having no control. Lange (1978) views helplessness as a "sense of being overwhelmed by the loss of control over the outside world" (p. 176). Miller (1983c) considers helplessness as synonymous with powerlessness. She defines powerlessness as "a perception that one's own actions will not affect an outcome" (p. 3). It was obvious from the accounts of the participants that they felt powerless that there was nothing they could do to alter their situation. This point 167 will be made more evident when the strategies for coping with the wait are discussed. The themes of helplessness and "no control" are also found in the nursing literature on waiting. Thome (1985) found that a feeling of "no control" was common to the situation of waiting in a clinic setting. Additionally, Hein (1980) points out that when patients must submit to a period of waiting decided by another, they are left feeling helpless without a sense of control over the situation. Hein further asserts that feelings of helplessness increase when patients perceive that nothing they could say or do would change the situation of waiting. In this study, several other reactions besides helplessness were found to result from the situation of waiting. The predominant ones included: feelings of depression, fear/anxiety, and anger/frustration. These feelings fluctuated in their presence and intensity throughout the wait and were usually short-lived. The factor of having "too much time" seemed to influence these reactions. An abundance of time and few activities with which to fill it provided the participants with too much time to think about their predicament and the upcoming surgery. This appeared to have the effect of increasing both the frequency and intensity of the emotional reactions. Feelings of depression were common for some of the participants. It seemed that depression was related to their appraisal of helplessness and lack of control over their situation. This observation is supported by a large body of psychological theory which correlates depression with helplessness (e.g. Beck, 1967; Seligman, 1975). Those participants who described intense feelings of helplessness and who indicated that they regularly thought about their predicament appeared to make the most statements about depression. The participants' expressions of feeling "useless," "down in the dumps," "sorry for," themselves, and disinterested in usual pleasure activities as well as their somatic complaints of sleep disturbances and low energy levels, were typical manifestations of depression. It is probable that depression may have been partly a reaction to the diagnosis of coronary 168 artery disease and/or the necessity of CABG surgery. Numerous researchers have demonstrated the prevalence of persistent depression post myocardial infarction (e.g. Wishnie, Hackett, & Cassem, 1971; Kavanagh, Shephard, & Tuck, 1975). Also, those participants who initially reacted with feelings of depression to the news of their needing surgery may have had persistent feelings of depression in relation to this throughout their wait. In light of these considerations, it is conceivable that the depression engendered by the wsit could have been compounded by depression related to the presence of illness and/or the need for surgery. This study's finding regarding the prevalence of feelings of depression while waiting for CABG surgery contrasts with that of other studies. Pieper and colleagues (1985) obtained low depression/dejection scores when they investigated moods of men awaiting CABG surgery. A possible explanation for the dissimilarity of their finding with the current one may be the different timeframes within which the waits occurred. Radley and Green (1986) also found a low incidence of depression in men awaiting this surgery. They reported that only 1258 of the men in their sample experienced bouts of depression. The different findings may be due in part to differences in sample and timing of data collection. Radley and Green's sample included only men aged 33 to 65 years, over half of whom were still employed. In the current study, both male and female participants were included. Their ages ranged from 46 to 75 years; only one of them was employed while waiting. Additionally, Radley and Green conducted their interviews within two weeks of angiography. This researcher's interviews occurred 7 weeks to 11 1/2 months following angiography. Furthermore, it could be that prolonged waiting periods before surgery were not an issue for the men in Radley and Green's study; however, they supplied no information to this effect. In this study, participants expressed fear and anxiety in association with threats related to illness or surgery. In particular, there was much fear about the possibility of a myocardial 169 Infarction or death while waiting. It seemed that media reports about mortality rates associated with waiting compounded the frequency and intensity of this fear /anxiety reaction. Fear and anxiety were also expressed in relation to the uncertainties surrounding the surgical experience and its outcome. Yamada (1984) also found that clients recalled feeling anxious about the unknowns surrounding the experience of CABG surgery while they awaited surgery. That anxiety is a representative emotion of the waiting period before cardiac surgery is supported in the literature. Pieper, Lepcyzk, and Caldwell (1985) measured anxiety, depression, and fatigue in men awaiting CABG surgery and found that anxiety was scored the highest. Morgan (1971) reported that anxiety was a prevalent emotion in the patients he interviewed who were waiting for valvular surgery. Additionally, Morgan found that during waits of 2 to 4 months, patients became increasingly anxious as they waited for the date of surgery to come. Blacher (1987) observed that when patients have to wait a month or two for surgery they do so in a "state of suspended animation" (p. 47), with intermittent elevations in their anxiety level. Thus, anxiety is commonly reported as a normal reaction to waiting for cardiac surgery. In this study, anger and frustration were also common emotional reactions to the situation of waiting. It appeared that anger was expressed in relation to the losses imposed by the wait and, in particular, to the loss of dignity, loss of freedom, and loss of control felt by the participants. Brehm's (1966) concept of "reactance" has applicability to this finding. Brehm postulates that when freedom of action is restricted, an individual will respond with anger and make efforts to overcome the resistance. There was considerable variability in the presence and intensity of anger reactions between participants. However, almost every perticipant explained that it was futile to get angry or bitter about the situation. It is probable that some participants used the interviews as an 170 opportunity to vent their anger. In fact, several commented that they usually kept such feelings to themselves. One participant specifically stated that talking about the situation had helped to "get things off the chest." In a few cases, anger was discharged by displacing it onto significant others. More frequently, it was discharged through the act of seeking someone to blame. Usually the blame was placed on the government. Yamada (1984) also found that clients recalled having feelings of anger while waiting for CABG surgery. Some clients in her study similarly blamed the government for their situation of having to wait for surgery. Other literature in nursing supports the findings that anxiety and anger are common reactions to waiting. Feelings of anxiety and anger have been found to be typical reactions of persons awaiting care in a clinic or emergency department setting (Thorne,1985). Hein (1980) maintains that frustration, anger, and even open hostility can result from situations of prolonged waiting. According to Leavitt (1982), "waiting and uncertainty can result in extreme emotional reactions: rage, outbursts, or acting out, because the self-concept is terribly threatened by the devaluation and powerlessness of being kept waiting and not knowing" (p. 79). Leavitt's statement is particularly supportive of this researcher's findings because it includes the elements of uncertainty, devaluation of the self-concept, and powerlessness all of which were found to be fundamental aspects of waiting in this study. This researcher found that boredom was also a common reaction to waiting. It seemed that this reaction was directly related to having too much time and too few activities to fill it. This was particularly true for those individuals whose illness imposed a low activity tolerance. Strauss and colleagues (1984) support this finding that boredom is a consequence of having too much time. Char (1978) points out that the experience of boredom is always unpleasant and undesirable and that the bored person feels oppressed and captivated. This feeling was certainly conveyed by many of the participants in this study who felt victimized by time. 171 Coping with the Walt In this study, a number of strategies were used to cope with the situation of waiting. These were classified as: considering alternatives, contacting the power source, maintaining a positive attitude, and making sense of the wait. Efforts to cope by maintaining a positive attitude and making sense of the wait were used most frequently. This was probably because the wait represented a no control situation. Therefore, emotion-focused coping prevailed. Although emotion-focused strategies were also used to cope with the illness and the prospective surgery, in those situations there were also a significant number of problem-focused strategies in force. To confront illness, some strategies of direct action were taken to regain and maintain some control. To confront the prospect of surgery, information was sought and efforts were made which enabled the participants to prepare for the upcoming event. With the wait, however, it seemed that there was little the participants could do but accept it and maintain some control over the distressing emotions it arousal. This finding is congruent with that of other investigators that under conditions of no control, emotion-focused forms of coping will predominate (Folkins, 1970; Folkman & Lazarus, 1980; Monat, Averill, & Lazarus, 1972). Lazarus and Launier (1978) lend further support to this finding through their suggestion that in a situation where a person feels helpless, there is not much that the person can do but accept, tolerate, or reinterpret the situation. Although there clearly was an emphasis on emotion-focused coping to deal with the situation of waiting, most of the participants did indicate that they had engaged in some problem solving to see if there might be an alternative to waiting. This usually was accomplished by considering the possibility of having the surgery performed elsewhere. Participants who entertained this idea usually did so early in their wait. Almost all of them, however, found reasons which made the option of going elsewhere impossible. It seemed that transportation 172 problems, the expense of travelling, the separation from family, and the thought of being cared for and operated on by unknown doctors were evaluated as being more threatening than the wait itself. It is also probable that the uncertainty surrounding the date of their surgery contributed to their decision to have the surgery performed locally. Because the date of surgery was not fixed, the participants always felt that there was a possibility that their surgery could take place in the near future. Additionally, some participants did mention that by the time they made all the necessary arrangements to go elsewhere for surgery, they might be no further ahead than if they had waited their turn at home. That most participants made either direct or indirect efforts to contact their surgeon reflected their perception that he was the individual with the power over their situation. This reflects Hein's (1980) assertion that "in any waiting situation, one person does the waiting; the person waited for exerts control by deciding . . . when to end the waiting period " (p. 174). It was found that there was more than one reason why the participants attempted to contact this power source. First, they wanted information which could give them a more specific timeframe for the length of their wait; second, some of them seemed to want to attract attention to their individual need for surgery and to remind those in power of their existence. It was interesting that participants often predicted that their calling the surgeon's office or seeking information from the cardiologist would be a futile exercise. It is possible that they carried out such actions despite anticipated disappointment because at least the actions gave them some sense of control in that they could feel they had at least tried to do something to help themselves. It was found that all participants tried to maintain a positive attitude while waiting. The specific strategies used to maintain a positive attitude were clearly deliberate efforts to try to make their situation seem better. The finding that participants used self-distraction techniques was not surprising in view of their reports of feeling bored and having too much time to think. 173 Other authors have reported that self-distraction strategies are commonly used to cope with waiting (Cozac, 1985; Thorne, 1985; Yamada, 1984). The frequency and intensity with which participants coped by making comparisons with others was remarkable. Repeatedly the participants told the researcher that their situation was better than that of other individuals (usually fictitious) who were waiting for surgery. Literature on victimization provides support for this finding. It has been theorized that when individuals are placed in a victimizing situation they can "minimize the extent of their victimization not only by comparing themselves against others who are less well off, but also by highlighting the attributes on which they emerge as better rather than worse off (Taylor, Wood, & Lichtman, 1983, p. 30). This seemed precisely what the participants did to lessen their sense of being victimized by their wait and having no control over it. Trusting was found to be a significant strategy for coping with the wait in a similar manner in which it had been used to cope with the prospect of surgery. However, unlike with surgery, the trust statements made in conjunction with waiting held considerably more doubt. It was surprising to find that many participants questional whether everyone on the waiting list "played the waiting game" fairly. It seemed to be a common feeling that they were more patient and honest than "the other guy." It was also noteworthy that trusting that their surgery could be advanced in the event of an emergency gave them a sense of security. The finding that participants copal with the wait by trying to make sense of it was clearly an indication that they lacked sufficient information to understand their situation. Participants engaged in this strategy to estimate when their surgery might occur. It appeared that this represented an effort to reduce some of the uncertainty surrounding the length of their wait. It also seemed that participants tried to make sense of their wait to justify to themselves that there were legitimate reasons for it. Usually, the participants came to the conclusion that there was 174 someone "worse off" who needed the surgery more urgently. This, therefore, provided them with a valid reason why they were still waiting. This finding has also been reported by Thorne (1985) who found that people found waiting situations more tolerable if their wait allowed another individual with greater need to receive care. Participants in this study indicated that they needed contact from the health care system while they waited for surgery. Not only could this provide them with needed information about the waiting list but also it could reduce their sense of feeling forgotten. This finding has some support in the literature. Weems and colleagues (1983) observed that individuals awaiting kidney transplant "may experience a feeling of having become depersonalized and recognized only as a tissue type or number on some vague list" (p. 22). They believed that these patients could be helped during the waiting time if they were provided regular information and expressions of concern from health professionals. To investigate their hypothesis, they sent monthly letters to individuals awaiting kidney transplant. Subjects reported that the letters provided them with important information, let them know that the nurses and the transplant team cared, and helped them to feel better. Thorne (1985) also reported on the therapeutic value of information and contact for individuals awaiting health care. In her informal survey of people awaiting care in a clinic or emergency setting, it was found that information was wanted about the estimated duration of the wait and the reasons for its necessity. Patients also indicated that acknowledgement of their presence through brief verbal communications was helpful. It would appear, therefore, from the results of the current study and the support of these two reports in the literature, that waiting Individuals could benefit from communication which both provides relevant information and expresses concern. It is important to emphasize the finding that waiting had significant effects not only for the participants awaiting CABG surgery, but also for their significant others. Waiting was very 175 much a family occupation. Although this finding was not specifically highlighted in the previous chapter, the excerpts from the participants' accounts distinctly reveal its presence. Statements to the effect that the spouse felt "helpless" too, that family members found the situation even "harder" to cope with, that the spouse had also lost out on a vacation, that the family didn't understand what they were going through, and that anger was sometimes vented on family members are just some of the examples which illustrate the effects of waiting for family members. It seemed that knowing that the family were also enduring considerable stress on account of the wait compounded the stress felt by the participants. The finding that the message to come to hospital generated feelings of relief is not surprising in light of the fact that much stress had been associated with the period of waiting. Also, the finding that, at that time, fear increased and thoughts became much more focused on the upcoming surgery is probably related to the concept of imminence (Lazarus & Folkman, 1984b). According to Lazarus and Folkman, the more imminent an event, the more intense its appraisal becomes. It was interesting to find that at this time the strategies of information seeking and thinking positively were increasingly mobilized. It would appear that these were direct efforts to more fully prepare for the imminent event of surgery. The Central Theme of Uncertainty Before concluding this discussion of the findings, it is important to highlight the central role that uncertainty had in the experience of waiting for CABG surgery- Uncertainty pervaded all three facets of the total experience. Within the illness facet, there was uncertainty about the course of the illness and the possibility of an illness-related complication, including death. Within the surgery facet, there was uncertainty surrounding the actual experience of surgery and hospitalization, and the short and long term outcomes of surgery. Finally, within the wait facet there was uncertainty about the duration of the wait and whether one would survive the wait 176 without sustaining a myocardial infarction or dying. A discussion of uncertainty with reference to works in the literature will add understanding to the significance of this concept in the current study. A situation is said to be uncertain when it cannot be adequately structured or categorized because sufficient cues are lacking (Budner, 1962). Mishel (1984) has found that there is a strong relationship between uncertainty and stress and suggests that it is vagueness, lack of clarity, and lack of information about a situation that generates a stressful evaluation of it. These observations lend support to the uncertainty perceived by participants in this study. The possibility of sustaining an illness- or surgery-related complication was indeed vague but nonetheless real to the participants. A lack of information about the experience of the upcoming surgery and the date for surgery also created uncertainty for these individuals. Using Mishel's theory, then, uncertainty would be significantly related to the stress of the experience of waiting for CABG surgery. Lazarus and Folkman (1984b) define two types of uncertainty: event uncertainty and temporal uncertainty. Event uncertainty refers to the likelihood of an event's occurrence. In the current study, all of the potential complications associated with cardiac illness and the upcoming CABG surgery can be understood in terms of event uncertainty. Whether or not these events (potential complications) would occur was unknown to the participants. The knowledge that low risks were associated with surgery was helpful in reducing the uncertainty about the outcome of surgery but in no way provided a guarantee for a successful outcome. According to Lazarus and Folkman, temporal uncertainty refers to not knowing when an event is going to happen. Because the participants did not have a definite date for surgery, their wait was plagued with temporal uncertainty. This was especially so for the four participants who had been given no estimated date for surgery. The concepts of event and temporal uncertainty thus have utility for explaining 177 the pervasiveness of uncertainty In the experience of waiting for CABO surgery. It has been found by Mishel (1983) that cardiovascular patients generally perceive uncertainty in the form of ambiguity about the severity of their illness. This relates to the life-threatening nature of the illness and the threats of continued damage and death. Additionally, cardiovascular patients were found to perceive uncertainty in relation to the effectiveness of their treatment. This latter point is congruent with the finding of this study that participants were uncertain about the outcome of surgery. From a broader frame of reference, Moos and Schaefer (1984) postulate that preparing for an uncertain future is a major adaptive task of physical illness. They maintain that illness necessitates that an individual learn to deal with uncertainty. From their perspective then, merely having cardiac illness would dictate that one must live with uncertainty. Uncertainty has also been discussed in relation to waiting. Leavitt (1982) describes waiting as an "uncertain adventure." She adds that "coping with uncertainty unbounded by any timeframe is an extremely painful psychological state, characterized by helplessness, anxiety, doubt, and confusion" (Leavitt, 1982, p. 78). This statement is particularly supportive of this study's findings regarding the emotional reactions and feelings of helplessness generated by a wait of unknown duration. Leavitt's comment that waiting, in combination with uncertainty, is "toxic to the human ego" (p. 78) is descriptively congruent with this study's findings regarding the loss of dignity and helplessness associated with waiting. No researchers have reported in depth on the presence or role of uncertainty in relation to the experience of waiting for CABO surgery. However, Penckofer and Holm (1984) did mention that the subjects in their study recalled feeling uncertain about their future before they had their CABO surgery. From a different context, Edwards (1987) found that uncertainty was a major and persistent feeling state for family members with a child awaiting corrective cardiac 178 surgery. As did this researcher, Edwards found that two of the most disturbing types of uncertainty were related to not knowing the timing of the surgery or the outcome of it. Her findings lend support to the significance of uncertainty in this study. Chapter Summary This chapter has discussed the major findings of the current study. To accomplish that, the findings from each facet of the experience of waiting for CABG surgery were considered in detail. Support was generally provided for the findings regarding the illness and surgery aspects of the experience. Some of the findings from the wait facet, however, differed from those reported in the literature. Literature pertaining to illness and, specifically, to cardiovascular illness was used to support this study's findings regarding the theme of loss of normalcy, the threatening nature of coronary artery disease, the reactions to having this illness, and the specific strategies used to cope with it. The findings of the surgery facet were corroborated with a substantial body of literature which supported the findings that dual appraisals of CABG surgery were universally made and that fear, anxiety, and ambivalence were common reactions to the prospect of surgery. Support for the findings pertaining to the various coping strategies used to prepare for surgery was provided largely by the research efforts of King (1985), Rakoczy, (1977), and Yamada (1984). A finding of this study not reported by other researchers was that alternatives to surgery were frequently considered during the waiting period. Most of the support for the findings of the wait facet was provided by general nursing literature pertaining to waiting. Indeed, the few researchers who have addressed the topic of waiting for CABG surgery often reported contrasting findings. For example, the findings that the wait represented wasted, low quality time and that it was frequently associated with feelings of depression were different from those reported by Pieper and colleagues (1985). It was suggested that the major reason for these 179 differing findings was the context within which the waits occurred. The central role of uncertainty in the experience of waiting concluded the discussion. In the succeeding chapter, a summary of the study is presented, major conclusions are drawn, and implications for nursing practice, education, and research are suggested. 180 CHAPTER SIX SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING This final chapter presents a summary of the study reported in this thesis. Major conclusions which arise from the study's findings are drawn. In addition, implications of the study's findings for nursing practice, education, and research are provided. Summary This study was implemented to explore and describe the experience of waiting for coronary artery bypass graft (CABG) surgery from the perspective of the Individual who has a prolonged wait for this surgery. The Impetus for it arose from the researcher's clinical observations of the stressful nature of this time period, the current problem of prolonged waiting periods prior to open heart surgery, and a distinct lack of investigation into the situation of waiting for CABG surgery- It was recognized that a study was needed to generate knowledge which could provide direction for the provision of effective health care to these individuals. The stress and coping theory of Lazarus and associates (e.g. Lazarus, 1966; Lazarus & Folkman, 1984b) provided the conceptual framework for the study. Because waiting for CABG surgery is typically regarded as a stressful experience Incorporating the dual threats of life-threatening illness and prospective open heart surgery, it was believed that this theory would have considerable utility for understanding the experience in question. Central to the Lazarus theory is the postulate that cognitive appraisal plays a key role in determining the impact of stressful events, the selection of coping patterns, and the emotional, physiological, and behavioural reactions. According to Lazarus, individuals appraise an event in terms of their own life experiences and react to that event in different ways depending on the meaning it has for them. Therefore, when researching a stressful encounter it is necessary to obtain self-report 181 data which describe the experience from the perspective of the Involved Individual. These theoretical perspectives provided direction for the study's research design. The phenomenological method of qualitative research was selected to guide the study. This methodology was seen to be the most appropriate because little knowledge was available about the experience of waiting for CABO surgery. Also, phenomenology was congruent with the researcher's aim of obtaining a description of the experience from the perspective of individuals who were awaiting CABO surgery. In order to obtain the rich, in-depth data needed to answer the study's question, audio-taped Interviews were conducted with 7 men and 2 women awaiting CABO surgery. During these interviews, semi-structured questions were asked to elicit descriptions of the participants' experience. A total of 17 in-depth interviews took place over an eight week period. All audio-tapes were transcribed verbatim immediately following their collection. Data collection and analysis occurred concurrently. During data analysis, the transcripts were examined for similar and dissimilar themes. Over time, major and minor categories of conceptual themes were developed which depicted the essence of the experience. The ongoing process of combined data collection and analysis enabled the researcher to return to the participants to have themes validated, refuted, or elaborated upon. The final analysis was performed after completion of data collection ami continued during the writing of the final report Each participant's experience was unique; however, there were commonalities in the experience for all participants. It was found that there were three critical components to the participants' experience of waiting for CABO surgery. These components were Identified as core facets of the overall experience and included: the illness, the upcoming surgery, and the wait. Each of these facets held distinct meaning for the participants and the meaning of one facet was always influenced by the meaning of the other two facets. Ongoing appraisals of each facet 182 occurred throughout the wait. The experience was thus complex and dynamic: The participants provided descriptions of the meaning of their illness, upcoming surgery, and wait; their reactions to each of these aspects of the experience; and their ways of coping with each. Thus, within each of the three facets, the researcher organized data according to the "meaning" of the facet, "psychological/emotional reactions," and "coping." Prevailing themes within each facet were identified. Loss and/or threat of loss and uncertainty were themes which pervaded all three facets of the experience. The illness facet was characterized by an appraisal of loss of normalcy. The key elements of normalcy lost through illness included: bodily functioning, leisure/pleasure activities, social functioning, family functioning, and employment and associated finances. Loss of control was a theme which penetrated all of the other losses. Uncertainty about the course of their illness generated an appraisal of threat. The participants sensed that they were at risk for having a heart attack or dying. The prevailing reactions to the illness were anger/frustration, fear /anxiety, and vulnerability. Efforts to cope with the losses, threats, and emotions associated with the illness included the following: taking action, seeking information, making sense of the illness, and thinking positively. The surgery facet was represented by appraisals of both potential loss and gain. The threat of loss was perceived in relation to the actual experience of surgery and hospitalization, as well as to the outcome of surgery. The prospect of surgery was threatening because it would mean having to endure discomfort and could mean losses in physical and/or mental functioning, if not loss of life. Uncertainty played a major role in this appraisal of threat In that there were unknowns surrounding both the actual experience of surgery and its outcome. Surgery also represented an opportunity to regain lost elements of normal life. The prevailing reactions to the prospect of surgery were those of fear/anxiety and ambivalence. Ambivalence was felt in 183 relation to the necessity of suraery and the desire to proceed with It. Seeking information, preparing for surgery, and thinking positively were the major strategies used to cope with the prospect of surgery. The wait facet was typically appraised as a negative part of the overall experience because it prevented the acquisition of the potential gain anticipated from surgery and it accentuated the losses associated with illness. Additionally, it engendered losses of freedom, time, and dignity. The threat of illness-related complications was substantially enhanced by having to wait for surgery. There was much uncertainty in relation to the duration of the wait and the possibility of dying or having a myocardial infarction before the time of surgery. The wait represented a no control situation. This gave rise to feelings of helplesseness. Other reactions to the wait were feelings of depression, anger/frustration, fear/anxiety, and boredom. The variable of "too much time" generated and intensified these reactions. Coping strategies primarily focused upon considering alternatives, contacting the power source, maintaining a positive attitude, and making sense of the wait. When these findings were compared with works in the literature it was observed that there was considerable support for the findings pertaining to the illness and surgery facets of the experience. However, there was a paucity of literature with which to compare the findings of the wait facet. The few studies which had been conducted during the waiting period before CABO surgery appeared to have taken place in a different context, that is, without the variable of a prolonged wait. This could have accounted for some differences in findings between the studies. Furthermore, many of the themes which depicted waiting in the current study were not addressed by other researchers. Some support was provided, however, by general nursing literature on the phenomenon of waiting. 184 Conclusions On the basis of the study's findings a number of conclusions have been drawn: 1. The home waiting period before CABO surgery is a significant phase of the overall experience of having CABO surgery. 2. To understand the experience of waiting for CABO surgery, consideration must be given to the context In which it occurs for an individual. 3. Waiting for CABO surgery is a complex experience incorporating the triple facets of coronary artery disease, prospective CABG surgery, and waiting itself. All three of these facets are themselves threatening aspects of the overall stressful experience of waiting for CABG surgery. Moreover, it is impossible to understand one facet without understanding the other two facets of the experience. 4. Uncertainty is a major variable which contributes to the stressful nature of the experience of waiting for CABG surgery. 5. Individuals' expectations of gains from CABG surgery are made in relation to the losses and threats incurredtiy their illness. 6. Individuals are motivated to follow healthy lifestyle practices and to make physical and psychological preparations for CABG surgery during their waiting period. Preparations are made in unique ways and past experience is a significant variable which influences how preparations are made. 7. All individuals who are waiting for CABG surgery have informational needs. However, the appropriate timing, content, and delivery method of Information is unique to each person. 8. Ambivalence is a typical reaction to the prospect of CABG surgery. Although it is manifest at different times and in different ways, mixed feelings toward surgery are common during the waiting period. 185 9. Having to endure a prolonged wait for CABO surgery within an unknown timeframe is an especially stressful experience. 10. Individuals who have a prolonged wait for CABO surgery have a strong need to maintain some sense of control over their situation. 11. Individuals who have a prolonged wait for CABO surgery have a strong need to think positively, to hope, and to be able to trust. 12. A prolonged wait for CABO surgery without explanation of the reasons for it and acknowledgement of one's existence as a "waiter" is particularly degrading to one's sense of dignity. 13. A prolonged wait for CABO surgery is not preferred nor seen to be of any benefit to the individual requiring CABO surgery. 14. A prolonged wait for CABO surgery is particularly stressful because it provides an abundance of time to reflect upon one's predicament, to grieve losses, and to anticipate threats. 15. The situation of waiting for CABO surgery not only affects the individual who is awaiting CABO surgery, it also has a significant impact on the entire family unit. Implications for Nursing Practice The findings of this study generate many implications for the provision of nursing care to persons awaiting CABO surgery. As was noted earlier in this report, the participants in this study had no nursing contact while they waited. However, the accounts of their experience clearly indicate that there is an obvious role for nursing. A major implication that arises from the findings is the need to conduct a thorough assessment of the individual awaiting CABO surgery. Ideally, assessment should commence at the time of the decision to have surgery and be ongoing throughout the waiting period. Because of the multifaceted nature of the experience of waiting for CABO surgery, assessment must include 186 examination of all three facets of the experience: the Illness, the prospective surgery, and the wait. The nurse should explore with the client the meaning of each facet of the experience. Additionally, information needs to be collected about reactions and coping strategies for each facet of the experience. When analyzing the data, interrelationships of the three facets must be considered. This detailed assessment is necessary for the nurse to understand the full impact of the experience of waiting for CABG surgery from the client's perspective. People awaiting CABG surgery have unique needs for information about their upcoming surgery. The nurse will be effective in meeting these needs only if she/he first determines what they are from the. client's viewpoint. An assessment of informational needs should begin at the outset of the wait. At that time, individuals should be permitted to ask questions of relevance to them. Many individuals desire basic information about their upcoming surgery at the beginning of their wait; others wish to receive much more detailed explanations. Obviously, such differences in needs can only be met through individualized attention. As the wait proceeds, informational needs must continue to be monitored. During the waiting time, there should be access to resources which can provide the required information. There is a need to be assured of a nurse's availability to discuss their concerns and questions. The telephone number of such a person should be provided. A variety of means for acquiring information needs to be available. Group sessions, printed materials, audiovisual teaching aids, and individualized instruction are some of the methods which may be useful. If a preadmission teaching clinic is available, individuals should be allowed to choose when is the most appropriate time for them to attend it. Clearly, surgical candidates need to have input Into what Information they receive, how they receive it, and when they receive it. Providing knowledge often does decrease uncertainty and enhance feelings of control over the situation. However, some individuals may not want much information about their upcoming surgery and, in particular, about the operative procedure. 187 Some prefer to tolerate uncertainty rather than to deal with fear of the known. Nurses need to recognize and accept this without feeling compelled to deliver such information. However, it is also useful to assess whether misconceptions about the CABO surgery experience may be contributing to their fear of knowledge. Sometimes the truth can be less frightening than what the mind can imagine. Often Individuals may feel ambivalent toward information about the surgical experience and will fluctuate between "wanting to know" and "not wanting to know." Information should be provided only when they indicate a readiness for it and according to their identified areas of need. The effects of providing this information must be closely evaluated. When providing information the Individual's past experience must be taken into consideration. It is important to recognize that persons awaiting CABO surgery often have questions and concerns pertaining to their illness as well as their prospective surgery. This is especially true for those who have had their illness recently diagnosed. Assistance may be needed in such areas as lifestyle management, symptom management, and medication administration. Problems In relation to weight control and appropriate activity are common occurrences during this time period. A multidisciplinary approach is needed to address these problems. The nurse can identify problem areas and make referrals as required to other members of the health care team. It is imperative that the nurse be aware of available community resources and that individuals waiting for surgery be informed of these. It is especially important to find ways to address illness-related problems during this time period because these individuals have a strong need to maintain a sense of control over their illness. Additionally, the motivation to do whatever one can to increase the probability of a successful surgery should be capitalized upon. The preoperative period represents time which could be well used to develop and reinforce strategies for lasting healthy lifestyle practices. The waiting period is typically fraught with distressing emotional reactions. Therefore, 188 the provision of nursing care must include attention to the affective component of the experience. It is necessary to provide these individuals with an opportunity to ventilate their feelings of loss and to share their fears about potential threats. A warm, accepting atmosphere is needed for this expression of emotion. Acknowledgement that feelings are valid is required. For many people, expression of feelings may be best accomplished through an individual counselling session with a nurse Some may also benefit from attending a support group where they can share their feelings with others confronting a similar situation. Also, it appears that many could benefit from learning stress management techniques to regulate the distressing reactions arising from their situation. Individuals awaiting CABO surgery need an opportunity to discuss their feelings of ambivalence toward surgery. It is important to reassure them that it is normal to feel ambivalent toward surgery. Also, acknowledgement needs to be given that they have a right to know about alternative therapies. Nurses should encourage these individuals to discuss alternative therapies with their attending physician(s) and, if necessary, make referrals to facilitate this process. A person's ability to cope during the waiting period has a significant effect on his or her well-being during this time. Therefore, both actual and potential coping strategies need to be assessed. Effective strategies should be reinforced. When coping strategies are deficient, the nurse needs to explore possible strategies with the individual to determine those which are most appropriate and acceptable. In particular, they may require assistance to develop strategies to deal with the problem of having too much time while they wait. A combination of strategies to keep busy and take the mind off of waiting are most useful in coping with this problem. The strategies of positive thinking, hoping, and trusting are especially useful at this time and should be emphasized. The nurse should convey confidence in the team who are providing and 189 will provide care to the Individual. This Is Important for increasing feelings of trust. Also, expression of gains anticipated from surgery should be encouraged. It is imperative to both accept and support these individuals' needs for downplaying risks and elevating hopes. However, in no way should fears be disregarded nor the life-threatening nature of the situation be negated. Efforts should be taken to ensure that these individuals have had opportunities to witness "living examples" of the success of the operation. It could be advantageous for some to have contact from a representative of the Open Heart Society during their waiting period. Such contact is important because it helps them to formulate expectations of success for their own surgery. Candidates for CABG surgery should receive regular contact during their waiting periods. Ideally, contact should be provided at least monthly. It should be used to both convey meaningful information about the waiting list and to show concern for the person who is waiting. The difficulty of having to wait must be acknowledged. Information about the expected length of the wait and the reasons for it must be provided. These individuals need to be given a timeframe for their wait. This would allow them some freedom to control the use of their time and could be helpful in reducing the daily agony of wondering when their telephone call will come. When communicating, honesty is essential; promises should not be made which cannot be kept. Efforts to pacify by providing false hope serve only to enhance their sense of indignity and feelings of anger or frustration. Equally as important, such actions can erode trust in the system and the providers of health care. This latter point is especially significant because having trust is extremely important to coping with the wait. The nurse does not automatically have access to information about the waiting list. The decision of who should provide such information to these individuals would need to be made collaboratively. Even if a representative from nursing is not the conveyor of such information, nursing does have a responsibility to inform those who have this information about the contact 190 needs of Individuals awaiting surgery. It could, however, be a sound use of resources to use regular nursing contact with these individuals to also convey information about progress with the waiting list. In this way, updated information about the waiting list and ongoing assessment and intervention of concerns relating to illness, upcoming surgery, and the situation of waiting could occur simultaneously with each contact. Additionally, the nurse is highly skilled in providing the empathy which is needed during this stressful time. Although these implications for practice have been discussed in relation to the individual who is awaiting CABO surgery, it is important to recognize that when these people live with significant others there is also a need to provide care to the whole family. An assessment of the family's experience of waiting is therefore in order. All of the comments mentioned in relation to informational needs and emotional care needs also have applicability for the other family members. Additionally, the family needs an opportunity to discuss disruptive changes in family functioning which may have occurred during the waiting period. An acceptable balance between the family's need to be protective and the individual's need to be self-reliant should be sought with the input of all involved persons. Perhaps the most appropriate way to address this problem is through family counselling. Thus, there are many ways that nurses could intervene to provide care to individuals who are awaiting CABO surgery and their families. Perhaps if these practices were followed and regular nursing care was provided throughout the waiting period, many of the stressful aspects of the experience could be reduced, if not, prevented. As one participant in this study commented: "[if] you [had] a little preventative maintenance [you] could still be running." Implications for Nursing Education Nurses need to be cognizant of the significance of the phenomenon of waiting in relation to health care. Toward that end, nursing programmes should provide students with an opportunity 191 to examine the phenomenon of waiting and to Identify it in a variety of clinical settings. It might be useful to conduct simulation exercises which sensitize students to the experience of waiting. Also, an opportunity to analyze a past personal experience of prolonged waiting would be beneficial. Other concepts of key importance in this study which should be included in nursing curricula include: uncertainty, loss, threat, and gain. Furthermore, it Is important that nurses providing care to the CABO candidate in the community understand that this individual is not only awaiting surgery but also living with a life-threatening illness. In order to provide comprehensive care, nurses must be taught that all aspects of the experience of waiting must be addressed: the illness, the prospective surgery, and the wait. Because of the multifaceted nature of the experience of waiting for CABO surgery, this situation presents an excellent opportunity for clinical placement of students in the community. In addition to enhancing the student's ability to provide care related to the illness and the upcoming surgery, it could also facilitate an understanding of the phenomenon of prolonged waiting. The need for nurses to develop high level assessment skills is obvious from this study. Therefore, nursing education must facilitate students' learning and practice of comprehensive assessment skills. Psychosocial assessment skills are particularly essential to understanding the situation of prolonged waiting before CABO surgery. It is especially important to instill in students 8 value for eliciting the meaning of the situation from the perspective of the client. Unless the situation can be understood from the client's perspective it will be impossible to provide effective care which is sensitive to the individual client's needs. Additionally, students must be equipped with family assessment skills in order to provide care to families who have a member awaiting CABO surgery. Finally, nursing programmes need to prepare students to appreciate that, although 192 Individuals may be confronted with the same future health care event, their needs for information are highly individual. Therefore, students need to be instructed in the importance of conducting an informational needs assessment with each individual prior to commencing any teaching. Students must be prepared to accept that there are times when an individual's desire to not receive threatening Information must be respected. Also, students should be taught the importance of allowing patients to choose what information is most appropriate for them and when and how it should be provided. Moreover, an understanding of the principle of readiness and its utility for judging when to provide information to the preoperative patient should be developed. Implications for Nursing Research This exploratory study has contributed only beginning knowledge to our understanding of the experience of prolonged waiting for CABO surgery. Clearly, more research is needed to guide the delivery of care to individuals who have prolonged waits in this context. Several suggestions for further research can be generated from this study's findings. The data for this study were collected at various points during the participants' waiting periods. Some individuals were interviewed during the early part of their wait; others were Interviewed after waiting many months. A few individuals were interviewed during the last week of their wait when their date of surgery had been confirmed. Due to the time constraints of the researcher it was impossible to continue interviewing each individual until the time of his or her surgery- Therefore, a comprehensive description of the entire period of waiting W8S not obtained. To acquire a fuller understanding of the entire wait, It would be beneficial to conduct a longitudinal study of the experience from the time of the decision to have CABO surgery until the time of entry to hospital for CABO surgery. Such a study could enhance our understanding of the changes that might occur over time throughout the wait. 193 This study explored the experience of waiting for CABG surgery from the perspective of the individual awaiting this surgery. The accounts of the participants clearly indicated that waiting had major implications for the family unit. Therefore, an essential research question needing to be asked is: "What is the family experience of waiting for CABG surgery?" It would be beneficial to study the experience of waiting from the perspective of the spouse and also to conduct family interviews to elicit perspectives from all members of the family. Studies of this nature could provide valuable information about family dynamics during the waiting period before CABG surgery. In order to discover more about the phenomenon of prolonged waiting, it would be fruitful to replicate this study with different populations who have prolonged waits for health care. In particular, a study with individuals who await transplant would be useful. In this study, participants were drawn from a large urban population. It would be beneficial to investigate the experience of waiting for CABG surgery from the perspective of those individuals who live in remote areas. Participants in this study were somewhat eased by the knowledge that they had easy access to health care services in the event of an emergency and that their surgery could be made a priority if necessary. A study of individuals waiting in remote areas might enhance our understanding of the Importance of prioxlmity of services to the experience of waiting for CABG surgery. Only one of the nine participants in this study was employed during his wait for CABG surgery. Although generalizations cannot be made on the basis of this one individual's account, it was apparent that he experienced considerably less disruption of his normal life than did the individuals who were unemployed while they waited. It would therefore be useful to implement a study which specifically examined the effect of employment upon the experience of waiting. The accounts of the participants revealed the extremely stressful nature of a prolonged 194 waiting period before CABG surgery. An important question which needs to be addressed is: "What is the relationship between a prolonged wait for CABG surgery and recovery from CABG surgery?'' Also, research needs to be undertaken to identify those interventions which have the most utility in assisting an individual to cope with stress during the waiting period. The participants in this study Indicated that they needed contact from health care representatives during their waiting period. It would be invaluable to investigate the effects of contact for these individuals. Evaluative research is needed to determine the effects of a variety of types of interventions such as contact by telephone, letter, or home visit. Research which identifies those types of Interventions which have the most effectiveness for the greatest number of individuals is needed. Also, the frequency with which contact is needed is an area which requires exploration. This study found that the experience of prolonged waiting within an unknown timeframe for CABG surgery was especially stressful. It would be beneficial to Investigate a group of individuals who had prolonged waits for CABG surgery within a known timeframe, that is, who had a definite date for their surgery. A comparison of their experience with that of the individuals in this study would shed more light on the finding that waiting within an unknown timeframe is especially stressful. Lastly, participants in this study conveyed that they had unique needs for information. However, no effort was made to explore In detail their specific needs for information. As well, more knowledge is needed about the appropriate timing of preoperative information and methods for delivering It to the Individual with a prolonged wait. Studies which investigate all of these aspects of informational needs of individuals awaiting CABG surgery are essential. It would also be useful to study intraindividual changes in informational needs throughout the waiting period. 195 Concluding Remarks It seems appropriate to conclude this report by focusing upon the anguished words of one of the participants in this study: I'll tell you exactly what [waiting is] like. It's like being a candle left in a room with the door closed and it's slowly burning down. That's exactly what it feels like, you know, because it's such a helpless feeling that there's nothing I can do. 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Currently on Sick Leave: Yes Unemployed Date of Cardiac Catheterization Number of Grafts Anticipated Previous surgery No Yes Procedure and Date. Previous myocardial infarction No Yes Date Educational Level. Number of years lived in Canada. Casual. No Temporary. Retired. Date of Decision to have CABG Surgery. Anticipated Date of CABG Surgery B. Sample questions for first interview: 1. What has it been like for you to wait for heart surgery? 2. What feelings did you have when you were first told you needed heart surgery? What are your feelings now In relation to waiting for surgery? 3. How has waiting for surgery affected your everyday life? 4. What has been difficult for you about waiting for surgery? 5. What benefits or personal gains have you acquired as a result of waiting for surgery? 6. How have you been dealing with your concerns and feelings while waiting for surgery? 7. What has helped (or not helped) you to deal with your everyday concerns while waiting? 8. What has helped (or not helped) you to prepare for surgery? 


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