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The illness experience of clients undergoing surgical intervention for coronary artery disease : clients’… Yamada, Patrice Keiko 1984

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THE ILLNESS EXPERIENCE OF CLIENTS UNDERGOING SURGICAL INTERVENTION FOR CORONARY ARTERY DISEASE: CLIENTS' PERCEPTIONS AND CONCERNS By PATRICE KEIKO YAMADA B.N., The U n i v e r s i t y of Manitoba, 1975 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1984 © P a t r i c e Keiko Yamada In presenting t h i s thesis i n p a r t i a l f u l f i l m e n t of the requirements fo r an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t f r e e l y a v a i l a b l e for reference and study. I further agree that permission f o r extensive copying of t h i s thesis for s c h o l a r l y purposes may be granted by the head of my department or by h i s or her representatives. I t i s understood that copying or p u b l i c a t i o n of t h i s t h e s i s f o r f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing  The University of B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date April 26, 1984 DE-6 (3/81) ABSTRACT THE ILLNESS EXPERIENCE OF CLIENTS UNDERGOING SURGICAL INTERVENTION FOR CORONARY ARTERY DISEASE: CLIENTS' PERCEPTIONS AND CONCERNS This study was designed to investigate the perceptions and concerns of c l i e n t s who underwent surgical intervention for coronary artery disease. The purpose of the study was to determine c l i e n t s ' viewpoints of their i l l n e s s experience. A phenomenological approach was used to guide data c o l l e c t i o n . Questions from a semi-structured interview guide e l i c i t e d c l i e n t s ' retrospective perceptions and concerns regarding their i l l n e s s experience. An analytic framework of "benchmarks" and "themes" was developed to examine the data which arose from the interviews. The c l i e n t s perceived and explained their i l l n e s s in ways di f f e r e n t from professionals. Clients r e l i e d on past experience and s o c i a l l y accepted ideas to make sense of their i l l n e s s and health care. Throughout their i l l n e s s , c l i e n t s were primarily concerned with concrete phenomena that they perceived might hamper their recovery from i l l n e s s . Determining progress was an important way c l i e n t s coped with i l l n e s s . The findings indicate that nurses must consider the c l i e n t ' s viewpoint i f e f f e c t i v e care i s to be given. In order i i i to reduce the discrepancy between c l i e n t s and professionals, nurses must incorporate c l i e n t s ' viewpoints into the plan of care. The findings of th i s study have implications for nursing education as well as research. i v TABLE OF CONTENTS ABSTRACT i i LIST OF TABLES v i i LIST OF FIGURES v i i i ACKNOWLEDGEMENTS ix CHAPTER 1 INTRODUCTION Background to the Study 1 Conceptual Framework 5 Problem Statement 8 Purposes of the Study 8 Theoretical and Methodological Perspectives of the Study 9 De f i n i t i o n of Terms 11 Assumptions 12 Limitations 13 Organization of the Thesis 13 Summary 14 CHAPTER 2 METHODOLOGY Selection of Participants 15 C r i t e r i a for Selection 16 Selection Procedure 16 Characteristics of the Participants 18 Data Col l e c t i o n 19 Interviewer's Role 21 Construction of Accounts 21 Data Analysis 22 Et h i c a l Considerations in the Research Process 23 Summary 24 CHAPTER 3 THE PROCESS OF ANALYZING THE DATA Benchmarks in the Ill n e s s and Recovery 25 Common Aspects or Themes of the I l l n e s s Experience 28 Relation of Benchmarks to Kleinman's Framework 29 Implications of Benchmarks and Themes for the Study 30 Summary 30 V CHAPTER 4 CLIENTS' PERCEPTIONS OF THEIR ILLNESS EXPERIENCE The Realization of I l l n e s s 33 The Appearance of Symptoms of Coronary Artery Disease ...34 Attaching meaning to bodily cues 35 Seeking Medical Care and Diagnosis 42 Deciding to seek medical care 43 C l i e n t s ' perceptions of their medical care 46 Coping with the diagnosis 52 Making sense of their diagnosed i l l n e s s 57 Managing their diagnosed i l l n e s s 61 The Worsening of the Il l n e s s 74 Making sense of changes in their i l l n e s s 74 Coping with the i l l n e s s worsening 76 The Plan to Undergo CABG 78 Undergoing Angiography 78 Making sense of the procedure 79 Changes in c l i e n t s ' perceptions of their i l l n e s s ...82 Deciding to Undergo CABG 84 Waiting for the Operation 93 Concerns 93 Coping during the waiting period 98 Having the Operation 112 The Recovery from CABG While in Hospital 113 The Experience in the Post-Anaesthesia Recovery Room and Intensive Care Unit 114 C l i e n t s ' perceptions of the c r i t i c a l care areas ...115 Concerns 12 5 Perceptions of care 128 The Experience on the Ward 140 Making sense of their recovery and i l l n e s s 140 Concerns 143 Perceptions of care 148 Coping with recovery and setbacks in progress 152 The Recovery at Home 157 The Discharge Home 158 Understanding discharge and the recovery at home ..158 Concerns 161 Coping with setbacks 171 Perceptions of the experience 184 Summary 189 CHAPTER 5 SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING Summary and Conclusions 190 Implications for Nursing Practice 198 Assessment 199 Planning and Implementation 200 Evaluation 204 Implications for Nursing Education 205 Implications for Nursing Research 206 v i BIBLIOGRAPHY 208 APPENDICES APPENDIX A Client Introductory Letter 220 APPENDIX B Client Consent Form 221 APPENDIX C Sample Interview Questions 222 APPENDIX D Physician Consent Form 223 LIST OF TABLES Table I. Phases, benchmarks and themes v i i i LIST OF FIGURES Figure 1. Kleinman's conceptualization of the health care system: internal structure (Kleinman, 1978, p. 86) 6 ix ACKNOWLEDGEMENTS I would l i k e to acknowledge my appreciation to the participants who so candidly expressed their views. Their willingness to share their experience gave much depth and humanity to the data c o l l e c t e d . The valuable input from the members of my Thesis Committee, Dr. Joan Anderson and Mrs. Carol J i l l i n g s was greatly appreciated. Their scholarly counsel challenged my conceptualization of this study. Lastly, I would l i k e to express my "thank-you's" to Peri, my parents, family and friends who supported me during this undertaking. Their good humor and encouragement was a great source of insp i r a t i o n to me. 1 CHAPTER 1 Introduction Background to the Study Two widely accepted p r i n c i p l e s of nursing practice are that health professionals can understand c l i e n t s ' i l l n e s s experiences and that interventions are patient-centered (Abdellah, Beland, Martin & Matheney, 1960; Sundeen, Stuart, Rankin & Cohen, 1981). However, although nurses attempt to in d i v i d u a l i z e patient care, their perceptions about c l i e n t s ' i l l n e s s e s arise primarily from a professional viewpoint. Because most c l i e n t s are not health professionals, their views on i l l n e s s can d i f f e r from nurses. A barrier to ef f e c t i v e care may result from the discrepancy between the c l i e n t ' s perceptions of the i l l n e s s and the nurse's perceptions of the same i l l n e s s . Thus, because perceptions of c l i e n t s and nurses do d i f f e r , i t cannot be taken for granted that nurses w i l l understand the c l i e n t ' s i l l n e s s experience. Why do gaps in understanding between c l i e n t s and professionals occur? Levanthal (1982) suggests that discrepancies occur because the lay person's interpretation of i l l n e s s i s based on an e n t i r e l y d i f f e r e n t model from that of the professional's s c i e n t i f i c one. Clients perceive sickness in terms of concrete symptoms and causes, past experience or 2 s o c i a l l y accepted ideas (Levanthal, 1982). These perceptions, in turn, influence the way people cope with i l l n e s s ( F i e l d , 1973). Thus, c l i e n t s explain and deal with i l l n e s s in their own c h a r a c t e r i s t i c fashion. Personal accounts of i l l n e s s provide insight into how c l i e n t s perceive their experience (Cousins, 1976; Halberstam & Lesher, 1976; Lear, 1980). Written from lay persons' viewpoints, these accounts reveal that professionals and c l i e n t s do interpret the same sickness in d i f f e r e n t ways. For example, Cousins' experience with i l l n e s s demonstrates the d i s p a r i t y between lay and professional models of sickness (Cousins, 1976). Whereas professionals diagnosed a s c i e n t i f i c basis for his symptoms (ankylosing s p o n d i 1 i t i s ) , Cousins searched his own past experience and b e l i e f s in order to make sense of his concrete symptoms. Instead of accepting the professional viewpoint, he embarked on what he believed to be an appropriate cure for his illness--laughter therapy. With the support of his physician, Cousins followed his own "Rx for cure" and recovered. Such personal accounts of the c l i e n t ' s i l l n e s s experience demonstrate the value of recognizing and incorporating the c l i e n t ' s b e l i e f s into the plan of care. In contrast to the lay person's interpretation of i l l n e s s , the professional's approach can be characterized as s c i e n t i f i c and r a t i o n a l . Care i s directed toward disease, abnormalities in the structure and function of body organs and systems. Here the Western medical paradigm makes the d i s t i n c t i o n between disease and the personal, interpersonal and c u l t u r a l reaction to i t - -3 i l l n e s s (Kleinman, Eisenberg & Good, 1978). Although sociocultural factors may be of some relevance in professional practice, the predominant custom i s to structure the c l i e n t ' s behavior into preconceived entities--disease states. L i t t l e consideration i s given to how c l i e n t s a c tually perceive and experience i l l n e s s . This lack of consideration of sociocultural factors may result in i n e f f e c t i v e care. In r e l a t i o n to the experience of convalescing from surgical intervention for coronary artery disease (coronary artery bypass grafting surgery), t h i s professional concern with disease i s refle c t e d in the l i t e r a t u r e and research. Commonly, the experience is described in terms of complications a r i s i n g from the surgery (bleeding, emboli, metabolic/cardiovascular i r r e g u l a r i t i e s , arrhythmias) (Brener, 1972; Brogan, 1972; Calhoun & Bozorgi, 1974; Garrett, 1977) or disruptions in normal function (diet, a c t i v i t i e s of d a i l y l i v i n g , sexual relations) (Chow, 1976; Holland, 1977). The professional's pre-occupation with disease even appears when subjective aspects of the experience are discussed; Hasser (1979b) describes post-operative pain as an "oppressive discomfort that i s less severe than pre-operative angina" and due to wound healing or a pericardiotomy syndrome (p. 91). Would c l i e n t s agree with t h i s description? From the l i t e r a t u r e , i t i s apparent that professionals' preconceived notions about i l l n e s s and recovery can interfere with the true i d e n t i f i c a t i o n of c l i e n t needs (Smith, 1981). Although both lay and professional perceptions are necessary to 4 plan care, the c l i e n t ' s viewpoint may be very import-ant--especially when dealing with subjective phenomena l i k e intractable angina and pain. "How the patient perceives his own situation i s important . . . what he thinks is far more important than what I think" (Wickware, 1978, p. 32.). Clients convalescing from coronary artery bypass grafting surgery, l i k e any person recovering from serious i l l n e s s , are confronted with major changes in their 1ives--physiologically, s o c i a l l y and emotionally (Smith, 1979). The concerns they perceive during and after h o s p i t a l i z a t i o n affect the way they cope with these changes and how they recuperate. In order to foster the c l i e n t ' s recovery process, nurses must understand the c l i e n t ' s own knowledge and values concerning heart surgery and incorporate these into nursing care (Brown, 1981; Nuttman, 1977). Thus, c l i e n t s ' perceptions are important to consider when planning and giving e f f e c t i v e patient-centered care. By studying the i l l n e s s experience from the c l i e n t ' s viewpoint, a more v a l i d basis can be formed to set p r i o r i t i e s for in-hospital care and plan e f f e c t i v e teaching programs. In this way, c l i e n t s ' actual concerns can be addressed in order to help them cope with the changes that occur following coronary artery bypass grafting surgery. Patient s a t i s f a c t i o n , trust and a p o s i t i v e response to care can result from negotiating two d i f f e r e n t perspectives of i l l n e s s - - t h a t of the c l i e n t and nurse (Dagslund, 1978). 5 Conceptual Framework The discrepancy between lay and professional interpretations of disease and i l l n e s s has been addressed by Kleinman's c u l t u r a l system model (Kleinman, 1978). In t h i s framework, health, i l l n e s s and health care-related aspects of societ i e s are conceptualized as c u l t u r a l systems: symbolic systems b u i l t out of meanings, values, behavioral norms and the l i k e (Kleinman, 1978, p. 86). The. model recognizes that an individual's experience with sickness i s structured within a s o c i a l and c u l t u r a l context (Kleinman, 1978). Because people's b e l i e f s , roles, expectations and relationships affect their perception of r e a l i t y , d i f f e r e n t groups in society may have disparate viewpoints on the same phenomenon. Consequently, patients and professionals may perceive the same sickness in d i f f e r e n t ways. In Kleinman's model, sickness is not conceived of as an iso l a t e d psychologic or biologic event, but rather a complex experience shaped by the body, mind and sociocultural milieu (Kleinman, Eisenberg & Good, 1978). Kleinman proposes that within the c u l t u r a l system of health care, three d i s t i n c t but interacting domains of interpreting and experiencing sickness are in operation. These are the professional, popular ( i n d i v i d u a l , family, s o c i a l network, community) and folk (non-professional healers) sectors (Kleinman, Eisenberg & Good, 1978). Each domain can be distinguished from another because each has a d i f f e r e n t way of explaining, experiencing and reacting to sickness based on 6 di f f e r e n t explanatory systems, s o c i a l roles, interaction settings and i n s t i t u t i o n s (Kleinman, Eisenberg & Good, 1978) (see Figure 1). How individuals subjectively construct d i s t i n c t forms of so c i a l r e a l i t y and make sense of i l l health i s based on explanations of sickness s p e c i f i c to the s o c i a l positions they occupy and the systems of meaning they employ (Kleinman, Eisenberg & Good, 1978). Thus, perceptions of i l l n e s s and disease are related to whatever domain of health care an individual occupies in society. Figure 1. Kleinman's conceptualization of the health care system: internal structure (Kleinman, 1978, p. 86). Points of interaction, -Individual-based entrance and exit -Family-based -Social nexus-based -Communi ty-based 7 In order to cope with and make sense of sickness, people use explanatory models s p e c i f i c to their reference domain. These explanatory models r e f l e c t the sector's norms and values and are an expression of how each domain constructs the i l l n e s s experience (Kleinman, 1978). Commonly, the professional domain perceives sickness as a physiological event—a disease. The popular sector, on the other hand, explains sickness in personal and s o c i a l terms, as an i l l n e s s . This is reflected in the commonsense lay approach to sickness as described by Levanthal (1982). Kleinman's model would therefore propose that the experience of convalescing from coronary artery bypass grafting surgery could be d i f f e r e n t l y explained by c l i e n t s as compared to health professionals. It i s apparent that the differences between the professional and popular explanatory models can create a gap between nurses and c l i e n t s . If nurses allow the professional model to dominate their practice, they w i l l be ignoring an essential aspect of care—how patients perceive their i l l n e s s experience. Only through understanding the popular domain of health care can the discrepancy be reduced and patient-centered care given. As the conceptual framework of this study, Kleinman's c u l t u r a l system model provides d i r e c t i o n to e l i c i t the c l i e n t ' s perceptions and viewpoint of i l l n e s s . Because i t recognizes the s o c i o c u l t u r a l nature of sickness, i t allows one to account for the discrepancies between lay and professional interpretations of i l l n e s s and disease. 8 Problem Statement Nurses caring for c l i e n t s convalescing from coronary artery bypass grafting surgery assume that they understand the i l l n e s s experience. However, the l i t e r a t u r e indicates that nurses understand, but from their own professional viewpoint. Patients' concerns, subjective experiences and how they make sense of their experience are not given p r i o r i t y . The f a i l u r e to recognize the c l i e n t ' s perspective may hamper delivery of ef f e c t i v e nursing care. Therefore, in an attempt to understand c l i e n t s ' perceptions of their i l l n e s s experience, t h i s study addresses two relevant questions. How do c l i e n t s perceive and interpret their i l l n e s s experience? What are the concerns of c l i e n t s discharged from hospital following coronary artery bypass grafting surgery? Purposes of the Study To understand the i l l n e s s experience from the c l i e n t ' s viewpoint, this study proposed to: 1. determine c l i e n t s ' perceptions of their i l l n e s s experience, and 2. ide n t i f y the concerns of c l i e n t s discharged from hospital following coronary artery bypass grafting surgery. 9 Theoretical and Methodological Perspectives of the Study Kleinman (1977) argues that c l i e n t s ' subjective experiences of i l l n e s s can be investigated by using the phenomenological approach. As a philosophy, approach and type of q u a l i t a t i v e research method, phenomenology recognizes the importance of understanding experience based on the individual's inner or subjective understanding of events, behaviors and surroundings (Oiler, 1982; Rist, 1979). In using t h i s approach, one can understand how sickness is constructed by c l i e n t s in the popular sector of the health care system. The phenomenological approach is congruent with Kleinman's model because each stresses the importance of subjective meanings and perceptions in everyday l i f e . Phenomenology i s based on the notion that people construct a unique inner subjective world from their own interpretations of phenomena as they are l i v e d (Wagner, 1970). Schutz (1967) argues that experience is l i v e d as a "stream of consciousness" and as experiential phenomena are l i f t e d out of the consciousness as discrete e n t i t i e s , the individual attaches meaning to the phenomena (p. 215). Because people can be understood not as objects in the outer world, but as u n i t i e s of sense and meaning in the inner subjective world of the conscious i n d i v i d u a l , one must consider the subjective aspect of everyday l i f e (Wagner, 1970, p. 6). Thus, understanding another can only occur by seeking out the other's point of view and determining the subjective context of 10 meaning (Schutz, 1967). This i n t e r - s u b j e c t i v i t y and understanding can be accomplished by explicating one's own subjective meaning system and contrasting i t to another person's (Schutz, 1967). In phenomenological research, the bias of the investigator is not eliminated, but rather i t i s recognized and incorporated into the process (Davis, 1978). Phenomenology recognizes that research is a s o c i a l l y ordered phenomenon (Davis, 1978). The insight gained from using q u a l i t a t i v e approaches such as phenomenology results from the type of information c o l l e c t e d . Because both the participant and researcher can c l a r i f y their points of view and s o c i a l l y construct experience, the data is "richer" than in quantitative methods. Being "close to the data" lessens the problem of v a l i d i t y and increases r e l i a b i l i t y ( F i l s t e a d , 1970, p. 6). Because interviewing produces descriptive data that represent participants' understandings of the s o c i a l world, q u a l i t a t i v e methods such as phenomenology increase v a l i d i t y (Rist, 1979). In the q u a l i t a t i v e approach, the sample i s selected because i t i s a v a l i d source of the desired information, not because i t is representative of a larger group. For t h i s reason, the sample size in q u a l i t a t i v e methods may be smaller than in quantitative research, depending on the type and richness of material obtained. The assumptions about phenomenology provide d i r e c t i o n to understand c l i e n t s ' subjective experiences and how they perceive the world. As an inductive, descriptive research method, 11 phenomenology enables one to determine the cognitive and subjective meanings of individuals from their own frame of reference (Bogdan & Taylor, 1975; Ornery, 1983). It allows one to describe experience as i t i s l i v e d and to know human beings rather than just know about them (Oiler; 1982). Lofland (1971) suggests that as a research method, phenomenology e n t a i l s immediacy and taking on the viewpoint of another. Through describing the individual's perceptions and interpretation of r e a l i t y as well as how these relate to behavior, one can better understand s o c i a l phenomena (Schwartz & Jacobs, 1979). This i s useful in understanding the nature of i l l n e s s and recovery. Kleinman's model and phenomenology dire c t the investigator to e l i c i t the c l i e n t ' s own subjective viewpoint of i l l n e s s . Because the c l i e n t ' s subjective meaning r e f l e c t s the meaning, values and norms of the popular domain of the health care system, understanding how c l i e n t s attach meaning to i l l n e s s w i l l elucidate the commonsense explanatory model of this sector. Increasing nurses' insight into c l i e n t s ' perceptions of their i l l n e s s can help provide a more v a l i d basis for care. D e f i n i t i o n of Terms In t h i s study, the following d e f i n i t i o n s apply: 1. adult--an individual 18 years of age or over. 2. concerns—those phenomena i d e n t i f i e d as arousing feelings of anxiety or worry. 3. coping—the manner in which concerns or perceived 12 problems are managed. 4. coronary artery bypass grafting surgery (CABG)--an operation performed in order to bypass blocked areas of the coronary a r t e r i e s . This is done when an individual has been diagnosed as having coronary artery disease and cannot be managed by medical treatment alone. 5. explanatory model--explanations of sickness which influence expectations, perceptions of symptoms, the way labels are attached to symptoms and behavior during care (Kleinman, Eisenberg & Good, 1978). 6. perception~-act of observing, understanding, apprehending through one of the senses (Sykes, 1976, p. 819). 7. recovery:—the process whereby c l i e n t s return to an optimal l e v e l of health following CABG. Assumptions This study is based on the following assumptions: 1. CABG has meaning for the c l i e n t and t h i s meaning has an ef f e c t on the person's l i f e . 2. Individuals can communicate subjective meaning to others. 3. The information people impart about their i l l n e s s experience v a l i d l y represents i t s essential nature. 4. Contradictions in people's perceptions of phenomena can occur. Because people interpret things d i f f e r e n t l y at d i f f e r e n t times, t h i s i s an accepted aspect of the commonsense experience 1 3 (Bogdan & Taylor, 1975). 5. Certain commonalities exist about the experience of having CABG and these can be i d e n t i f i e d as general "concerns". 6. Although the investigator has a professional perspective, she can understand the c l i e n t ' s point of view. Limitations The following l i m i t a t i o n s are recognized: 1. Due to transportation constraints, a l l participants in the study were selected from one urban area. 2. A l l participants were recruited from one setting. Because i l l n e s s i s s o c i o c u l t u r a l l y constructed, any p a r t i c u l a r i t i e s of this setting may have influenced the c l i e n t ' s perceptions of the i l l n e s s experience. 3. In q u a l i t a t i v e methods such as phenomenology, a di s p a r i t y may occur between what people say and what they mean (Schwartz & Jacobs, 1979). However, th i s l i m i t a t i o n was reduced by c l a r i f y i n g and val i d a t i n g participants' accounts during data c o l l e c t i o n . Organization of the Thesis The succeeding chapters of thi s thesis w i l l discuss pertinent aspects of the research process and address the study's questions. Chapter 2 w i l l discuss how data were 14 c o l l e c t e d as well as e t h i c a l considerations of the study. Chapter 3 w i l l more e x p l i c i t l y describe how data were analyzed under a central organizing structure. Chapter 4 w i l l contrast c l i e n t s ' accounts with the professional view as found in the l i t e r a t u r e . Chapter 5 w i l l conclude with a discussion of the implications of the study for nursing practice, education and research. Summary This chapter has i d e n t i f i e d and discussed the problem and purposes of the study in r e l a t i o n to background information. The conceptual framework which provides d i r e c t i o n to determine the c l i e n t ' s perspective has been related to the actual theore t i c a l and methodological approach u t i l i z e d . By gaining insight into c l i e n t s ' perceptions of their i l l n e s s experience, gaps between professionals and c l i e n t s can be reduced. 15 CHAPTER 2 Methodology As described in Chapter 1, phenomenology was the research methodology used to investigate c l i e n t s ' perceptions of their i l l n e s s experience and their explanatory models. Because q u a l i t a t i v e methods such as phenomenology advocate that data r e f l e c t how participants view their world (Bogdan & Taylor, 1975; F i l s t e a d , 1970), information was co l l e c t e d in the natural setting (participants' homes) and from people who could share their f i r s t hand knowledge about CABG. Phenomena were thus understood and explained on the basis of the participants' perceptions of their experience. In t h i s chapter, the application, of the methodology w i l l be discussed in terms of selection of part i c i p a n t s , data c o l l e c t i o n , data analysis and e t h i c a l considerations of the study. Selection of Participants In order to e l i c i t c l i e n t s ' perceptions of recovery from CABG, a source of information was needed. Phenomenology d i r e c t s one to c o l l e c t the data from those who have l i v e d the experience 1 6 (Omery, 1983). Thus, c l i e n t s who were hospitalized for CABG were i d e n t i f i e d as pertinent sources of information. A purposive sampling technique was used to select c l i e n t s who could p a r t i c i p a t e in the study (Schwartz & Jacobs, 1979). In this technique, the researcher gained access to subjective meaning by searching for individuals who were "competent" to answer the study's questions--those adults who had actually experienced CABG. In thi s sense, competency was determined by the presence of four c r i t e r i a . C r i t e r i a for Selection Clients were selected to par t i c i p a t e in the study based on the following c r i t e r i a : 1. 18 years of age or over. 2. having had CABG during the current h o s p i t a l i z a t i o n . 3. a b i l i t y to speak and read English. 4. alertness and orientation to time, place and person. These c r i t e r i a aimed to eliminate those c l i e n t s who could not speak about their experience either due to communication d i f f i c u l t i e s or not actually having had the surgery. Selection Procedure The setting where the participants were located was the cardiac teaching unit of a 550-bed urban h o s p i t a l . People 17 recovering from a l l types of heart disease were found there. A teaching program for CABG c l i e n t s was in operation at the time of participant selection. This consisted of a slide-tape presentation, a booklet (Barbarowicz, 1976), and one-to-one teaching by the staff nurses. The c l i e n t s were admitted and discharged from th i s unit, with temporary stays in the Post Anaesthesia Recovery Room (PAR) and Intensive Care Unit (ICU) following surgery. Prospective participants for the study were assessed in terms of their meeting the c r i t e r i a for selection by re f e r r i n g to the hospital unit's Nursing Kardex as well as questioning the s t a f f . Because the Kardex is a centralized source of information about c l i e n t s ' diagnoses and nursing care, i t was id e a l l y suited as a tool to select potential participants. The nursing staff also provided valuable information regarding c l i e n t s ' physical, emotional and mental a b i l i t y to tolerate recruitment as well as their readiness for discharge. Clients were approached three to four days prior to anticipated di scharge. An introductory l e t t e r was given to the prospective participants by one of the nursing staff (see Appendix A). This l e t t e r explained the purposes of the study and what was entailed. After c l i e n t s had read the l e t t e r , they were asked to inform their nurse i f they desired to talk to the researcher further. At th i s point, the investigator introduced herself to those c l i e n t s who expressed an interest in p a r t i c i p a t i n g . The researcher explained the study in more d e t a i l , using 18 the introductory l e t t e r as a guide. If the c l i e n t agreed to par t i c i p a t e , the investigator proceeded to read the consent form aloud. The c l i e n t also read the consent form and subsequently signed i t (see Appendix B). One week after discharge, the c l i e n t s were phoned to arrange a convenient interview time. This one week "rest period" was requested by the i n t i a l p articipants in the study and was subsequently honored in the remaining interviews to standardize the experience as much as possible. At the time of participant selection, i t became apparent that the c l i e n t group was also being recruited for a study on the psychological aspects of heart disease and CABG. Although t h i s presented a potential barrier to c l i e n t p a r t i c i p a t i o n , no real c o n f l i c t s emerged. The two c l i e n t s already engaged in the psychological study declined to p a r t i c i p a t e . Characteristics of the Participants Eight c l i e n t s gave their consent to pa r t i c i p a t e in the study. One man withdrew prior to data c o l l e c t i o n due to d i f f i c u l t i e s encountered at home. Of the remaining seven participants, six were male and one, female. Their ages ranged from 50 to 74 years, with three c l i e n t s being over 64 years of age. A l l of the participants were Caucasian with the exception of one individual who was Chinese. A l l were married and l i v i n g with their spouses during the course of the i l l n e s s . Of the 19 five individuals who were not r e t i r e d , two were seeking employment. The other three people were on sick leave from their previous places of employment. A l l the c l i e n t s were admitted to hospital in order to undergo CABG. Of the seven, one person had six bypass grafts; two people had three, with the remaining four receiving quadruple bypasses. One individual also had a permanent epi c a r d i a l pacemaker inserted at the time of CABG. The participants' stay in hospital ranged from 10 to 16 days in length. They were discharged approximately 10 days post-operatively with the range being 8 to 12. A l l were discharged within 2 to 5 days following recruitment into the study. There was considerable variation among the participants in the onset of their symptoms and the duration of their i l l n e s s . The longest course was 20 years, with the shortest being 6 months. The amount of time spent waiting for CABG to be performed also varied. One participant waited 6 months while another was able to undergo CABG within 12 days following coronary angiography. Data Co l l e c t i o n The data regarding c l i e n t s ' i l l n e s s experiences were col l e c t e d through indepth interviews. At least one semi-structured interview was conducted in participants' homes within 9 to 17 days after discharge from h o s p i t a l . The scheduling 20 varied according to the participant's perceived readiness to tolerate the interview. (This was approximately 21 days post-op.) This p a r t i c u l a r time frame was selected in order to id e n t i f y concerns of the discharge period and e l i c i t perceptions about the recent h o s p i t a l i z a t i o n . A l l interviews were audiotape recorded and lasted from 75 to 90 minutes. However, the actual time spent with the participants was considerably longer. After the formal interview regarding the c l i e n t ' s i l l n e s s experience was completed, there was a s h i f t to so c i a l conversation. A subsequent interview was done to c l a r i f y information from the f i r s t session, with one participant refusing a second interview. Participants were interviewed a maximum of two times. In t o t a l , 13 interviews with 7 individuals were completed over a 10 week period. An interview guide consisting of open-ended questions was used to di r e c t the conversation and c o l l e c t data relevant to the research question. The interviewer's questions arose from Kleinman, Eisenberg and Good's framework for e l i c i t i n g the patient's explanatory model (Kleinman, Eisenberg & Good, 1978) (see Appendix C for sample questions). The intent of the questions was to direc t the conversation toward c l i e n t s ' perceptions and concerns regarding their i l l n e s s and recovery from CABG. 21 Interviewer's Role When interviewing the participants, the investigator used communication and interpersonal s k i l l s to establish rapport and a trusting atmosphere for the opinion-giving process (Abrahamson, 1983; Cicourel, 1964). The purposes of the interview were again c l a r i f i e d and the format for discussion was compared to that of a "friend talking to another friend". The experience of the participants was accepted as expressed. If a person appeared to evade a topic, the investigator attempted to approach i t from a less threatening perspective. Construction of Accounts In phenomenology, the way to understand the c l i e n t ' s perspective is to focus on the accounts that arise from indepth interviewing. The inter-subjective nature of the interview cannot be minimized i f t h i s understanding i s to occur. By c l a r i f y i n g and v a l i d a t i n g what was expressed during the interview, the researcher was able to understand how the participants perceived their i l l n e s s and how t h i s d i f f e r e d from the investigator's viewpoint. In order to reduce idiosyncratic bias, i t was necessary for the researcher to be aware of her own professional perspective during the interview (Bogdan & Taylor, 1975; Cicourel, 1964). Thus, the investigator could more c l e a r l y understand the c l i e n t ' s viewpoint by being aware of the 22 differences in viewpoint between herself and the c l i e n t (Giorgi, 1975a). Data Analysis The tape recorded interviews were transcribed and in d i v i d u a l l y analyzed by the investigator. Each interview was read through to get a sense of the whole as well as what constituted d i f f e r e n t parts as expressed by the part i c i p a n t s . Spouses' comments were eliminated but otherwise a l l parts of the interview were retained for further analysis (Giorgi, 1975b). The s i m i l a r i t i e s and d i s s i m i l a r i t i e s of the parts were then examined and related. The experience as expressed by the participants was organized around common conceptual themes that emerged. The emphasis in phenomenology is to follow those procedures which best allow the participants to speak for themselves (Bruyn, 1970). Thus, the investigator r e f l e c t e d on the participants' accounts and integrated the insights from them in order to create a descriptive structure of c l i e n t s ' experiences (Giorgi, 1975b). Throughout the analysis, the investigator brought her own subjective experience to the process in order to attach meaning and make sense of the data. Giorgi (1975a) states that this does not " v i t i a t e the findings" but rather sets the l i m i t s of the context in which the findings are v a l i d (p. 95). In Chapter 3, the process of analyzing the data w i l l be discussed in more depth. 23 E t h i c a l Considerations in the Research Process E t h i c a l issues regarding participant selection have already been discussed. The researcher also ensured that the c l i e n t s were informed about the study prior to giving consent to pa r t i c i p a t e . The purpose, use of audiotape recorded interviews, time involved and frequency of contact was discussed. Any questions regarding the study or data c o l l e c t i o n methods were answered. The prospective participants were informed that they were not obliged to par t i c i p a t e in the study and could withdraw or refuse to answer any questions at any time without any effect on their care. Methods to ensure c o n f i d e n t i a l i t y were also discussed. The researcher explained to the c l i e n t s that c o n f i d e n t i a l i t y would be maintained in the following manner: 1. Cl i e n t s ' names would not appear on the t r a n s c r i p t s . Each c l i e n t would be assigned a code name. 2. The l i s t of c l i e n t names and codes as well as the consent form would be kept separate from the data and accessible only to the researcher. 3. Any information that might identi f y the participant would not be revealed. Provision was made for the interview tapes to be erased and the tr a n s c r i p t s shredded at the completion of the study. The participants were informed that they would be contacted regarding the results of the study. In the course of gaining access to the hospital setting, the consent of the attending surgeons was obtained (see Appendix 24 D). Two of the three physicians gave their written consent for the c l i e n t s under their care to participate in the study. One physician declined to consent because he did not support the study. Summary This • chapter has discussed the application of the phenomenological method in order to determine c l i e n t s ' perceptions of their i l l n e s s experience. Methods to select p a r t i c i p a n t s , c o l l e c t and analyze data have been i d e n t i f i e d . E t h i c a l considerations of the research process have also been addressed. 25 CHAPTER 3 The Process of Analyzing the Data Using phenomenology as a method to c o l l e c t information about c l i e n t s ' perceptions e n t a i l s that the investigator bring her own viewpoint to the analysis of data. When trying to understand c l i e n t s ' subjective experiences and explanatory models, the investigator must make sense of the data in a way which i s meaningful to her. By making e x p l i c i t the data analysis procedure, the r e l i a b i l i t y of the study can be increased (Oiler, 1982). Thus, i f another researcher assumed the attitude described by t h i s investigator, similar meanings would be perceived and understood (Giorgi, 1975b). In t h i s chapter, the data analysis procedure w i l l be discussed more e x p l i c i t l y so that a basis i s provided to present the results of the study. Two relevant concepts, "benchmarks" and "themes" w i l l be presented as useful in understanding c l i e n t s ' accounts and constructing their i l l n e s s experience. Benchmarks in the Il l n e s s and Recovery From their accounts, i t is evident that the participants perceived the i l l n e s s experience of CABG as being more than just 26 the operation and recovery. Rather, CABG was described as one event among many which comprised the entire i l l n e s s experience. Although the participants attached d i f f e r e n t meanings to certain aspects of the experience, a l l commonly described similar "benchmarks" which highlighted their i l l n e s s and recovery. These reference points provided the investigator with a means to analyze and understand the data. The notion that patients conceive of i l l n e s s and treatment in terms of time was proposed by Roth (1963) in his study of patients convalescing from tuberculosis. Using a q u a l i t a t i v e approach, he i d e n t i f i e d that c l i e n t s use certain aspects of diagnosis and treatment as reference points to mark time during the course of i l l n e s s . These benchmarks become almost timetable norms, especially when applied to i n s t i t u t i o n a l settings where time i s a commodity. Roth (1963) concluded that searching for clues indicative of benchmarks in the passage of time was a s i g n i f i c a n t way that c l i e n t s coped with i l l n e s s . For timetables to develop, Roth (1963) i d e n t i f i e d two necessary conditions: 1. The series of events or conditions under scrutiny must be thought of in terms of a c a r e e r — a series of related and definable stages or phases of a given sphere of a c t i v i t y that a group of people goes through in a progressive fashion . . . in a given d i r e c t i o n or on the way to a more or less d e f i n i t e and recognizable end-point or goal or series of goals (p. 94). 2. There must be an interacting (not necessarily 27 face-to-face) group of people with access to the same body of clues for constructing the norms of a timetable (p. 95). In terms of the i l l n e s s experience of CABG, these two conditions were present. F i r s t l y , the c l i e n t s themselves perceived the i l l n e s s experience of CABG as a career. As w i l l be evident in Chapter 4, the participants explained their i l l n e s s as a series of dif f e r e n t phases of coping and managing the personal and s o c i a l aspects of their disease. As the i l l n e s s ran i t s course, various events which marked the passage of time were attached significance--for example, the i n i t i a l diagnosis of coronary artery disease. By establishing benchmarks, the c l i e n t s were able to make sense of their experience and see progress toward the goal of health and the absence of angina. Secondly, although the c l i e n t s did not actually interact as a group of people, they did have similar access to the source of clues necessary to i d e n t i f y benchmarks. Because i l l n e s s i s a sociocultural phenomenon, c l i e n t s ' interaction with the health care system provided them with the necessary information to construct benchmarks. Thus, because timetabling is culture-bound, the benchmarks the participants i d e n t i f i e d were a r e f l e c t i o n of their own culture, background and associations (Roth, 1963). The notion of dividing up large masses of information into more manageable parts is not foreign to humankind. Many diffe r e n t examples exist which are perhaps aspects of the same 28 phenomena (e.g. dividing up a thesis into chapters, dividing up subject matter into courses) (Roth, 1963). In t h i s study, the idea of d i v i s i o n is applied in two ways in order to make sense of the c l i e n t ' s i l l n e s s experience. The c l i e n t s , in attaching meaning to the events and phenomena of their i l l n e s s , created their own benchmarks and phases. Through their accounts i t is apparent that they perceived their i l l n e s s as comprising d i f f e r e n t phases, each marked by certain s i g n i f i c a n t events. Thus, the c l i e n t s , themselves, set up di v i s i o n s within their own experience of i l l n e s s . The investigator also brought her own sense of timetabling to the analysis procedure. In trying to make sense of c l i e n t s ' accounts, the entire experience was divided into phases as understood by the investigator. Throughout t h i s process, the investigator was guided by what participants had i d e n t i f i e d as benchmarks in the experience. The resulting phases, therefore, were not arb i t r a r y , but rather accurately reflected the experience of the participants and preserved the essential nature of their timetabling. Common Aspects or Themes of the Illness Experience While analyzing c l i e n t s ' accounts, i t became evident that there were aspects of the experience which were common to a l l the phases of the i l l n e s s experience. These aspects were described by the participants as feeling-states or ways of 29 coping with i l l n e s s . Along the time axis, these aspects formed a series of recurring themes throughout the experience. Thus, although the i l l n e s s of the c l i e n t s progressed through d i f f e r e n t phases, these themes recurred, a l b e i t in varying intensity. Throughout the trajectory of the i l l n e s s , then, variations of the themes were a s i g n i f i c a n t aspect of the entire experience. The investigator i d e n t i f i e d six threads of the i l l n e s s exper ience: 1. hope, 2. trus t , 3. choices, 4. determining progress, 5. unique coping strategies, and 6. the shared nature of the i l l n e s s . Relation of Benchmarks to Kleinman's Framework As discussed in Chapter 1, Kleinman's c u l t u r a l system model, proposes that c l i e n t s make sense of their i l l n e s s experience in a s o c i a l l y constructed fashion (Kleinman, 1978). Because structuring time i s also a so c i o c u l t u r a l way for c l i e n t s to explain i l l n e s s , benchmarks are congruent with Kleinman's model. Within the framework, benchmarks would be one aspect of the explanatory model of the popular domain. They would not only a s s i s t c l i e n t s attach meaning to certain phenomena but also help them cope with the i l l n e s s . 30 Implications of Benchmarks and Themes for the Study Benchmarks and common aspects of the experience provided d i r e c t i o n for the investigator to analyze the accounts in s p e c i f i c ways. By analyzing the data in terms of phases and common themes, the investigator was able to understand the i l l n e s s experience from her own perspective while s t i l l preserving c l i e n t s ' viewpoints. The result of the analysis was an organized description of c l i e n t s ' perceptions of the i l l n e s s according to d i f f e r e n t phases and common aspects of the experience. In the following chapter, t h i s descriptive structure of the i l l n e s s experience w i l l be presented with reference to pertinent l i t e r a t u r e . Summary This chapter has presented background information to explain how data were analyzed in keeping with the phenomenological approach. The concepts of benchmarks and themes were discussed as useful ways to understand participants' accounts and construct their i l l n e s s experience. 31 CHAPTER 4 Cl i e n t s ' Perceptions of their I l l n e s s Experience Using the phenomenological approach to e l i c i t c l i e n t s ' viewpoints resulted in a descriptive account of the i l l n e s s experience. Participants not only expressed their views, but also explained how they made sense of their i l l n e s s . In their accounts, c l i e n t s ' explanatory models of the popular domain of health care became e x p l i c i t . As discussed in Chapter 3, participants' accounts were analyzed according to expressed and perceived benchmarks of the experience. Out of the data analysis, four phases of the i l l n e s s experience emerged: 1. the r e a l i z a t i o n of i l l n e s s , 2. the plan to undergo CABG, 3. the recovery from CABG while in h o s p i t a l , and 4. the recovery at home. In addition to benchmarks, common themes were present in the phases. These were: 1. hope, 2. trust, 3. choices, 4. determining progress, 5. unique coping strategies, and 32 6. the shared nature of i l l n e s s . Although these themes varied in intensity during each phase, their presence was a s i g n i f i c a n t aspect of how c l i e n t s explained their i l l n e s s . Table I. Phases, benchmarks and themes Phases: Benchmarks Themes The Realization of I l l n e s s : The appearance of symptoms of coronary artery disease. Seeking medical care and diagnosis. Hope I The worsening of the i l l n e s s . Trust The Plan to Undergo CABG: Choices Undergoing angiography. Determining progress I Deciding to undergo CABG. Unique coping strategies I Waiting for the operation. Shared nature of the i l l n e s s Having the operation. The Recovery from CABG While in Hospital: The experience in the Post-Anaesthesia Recovery Room and Intensive Care Unit. The experience on the ward. The Recovery at Home: The discharge home. In t h i s chapter, participants' accounts w i l l be presented according to the phases, the i d e n t i f i e d benchmarks and the 33 common themes of the i l l n e s s experience (see Table I ) . The ways c l i e n t s perceived their i l l n e s s and i d e n t i f i e d concerns w i l l become evident in these accounts. Pertinent l i t e r a t u r e w i l l also be discussed in re l a t i o n to participants' accounts. By examining l i t e r a t u r e pertaining to c l i e n t s ' descriptive accounts, a comparison can be made between the popular and professional viewpoints on the i l l n e s s experience of recovery from CABG. The Realization of I l l n e s s During the i n i t i a l phase of their i l l n e s s , c l i e n t s explained how they became aware of changes in their health. Although i t is unclear whether a l l or some of the participants actually suffered a myocardial i n f a r c t i o n , i t i s evident that a l l experienced angina as a symptom of coronary artery disease. Realizing that they were i l l was a gradual process as c l i e n t s attempted to make sense of their symptoms. Throughout th i s phase, the participants r e l i e d on past experience to interpret their symptoms. When c l i e n t s became concerned about their symptoms, they made choices about whether or not to seek medical care. After their i l l n e s s was diagnosed, hope and trust emerged as s i g n i f i c a n t ways c l i e n t s coped with implications of having a disease. The f i r s t phase of the i l l n e s s occupied the time from the appearance of symptoms of coronary i n s u f f i c i e n c y u n t i l the i l l n e s s worsened. The benchmarks which highlighted this phase 34 were symptom appearance, the seeking of medical care and diagnosis, and l a s t l y , the worsening of the i l l n e s s . The Appearance of Symptoms of Coronary Artery Disease In retrospect, the c l i e n t s were able to c l e a r l y i d e n t i f y the f i r s t signs of i l l n e s s . They had insight into their body's functioning and were aware that the changes they perceived were abnormal. I knew something was happening to me, you know. Because I knew myself how I f e l t . I just f e l t this awful, t e r r i b l e f e e l i n g . Like, I, I couldn't describe i t . But, i t , i t wasn't natural. . . . I knew i t wasn't a s t r a i n of any kind. It was just something that just happened that made me feel i l l . I was having ah, these t e l l t a l e signs that something wasn't quite r i g h t . But I just didn't always f e e l good. I usually always f e e l good, f u l l of energy. And there were times, I just didn't f e e l good. I think kinda, that's kinda where i t started. It i s evident that c l i e n t s knew when the i r bodies were not functioning normally. Attempting to understand the meaning and significance of their bodily cues was an important a c t i v i t y surrounding t h i s benchmark. 35 Attaching meaning to bodily cues. Once the participants became aware of changes in their bodily functioning, they attempted to attach meaning to these cues. One way to do this was through making comparisons to their usual a c t i v i t i e s of da i l y l i v i n g . Because their bodily cues were perceived to interfere with their normal routine, these symptoms became a concern. I went f i s h i n g . And packing a l l the stuff out, gettin' the t r a i l e r ready, puttin' in the truck, you know, a l l the fi s h i n g stuff l i k e the motor and that--these pains, and I would have to stop, and rest for a few minutes. Once in a while, I would get dizzy s p e l l s . . . . It was pain that, i t wasn't ah, you know, i t was something that would stop you from doing whatever you were doing. Cli e n t s realized that their symptoms were s i g n i f i c a n t because they d i f f e r e d from their norm. The participants also recognized that their symptoms were abnormal because they perceived them as "painful" and uncomfortable. Well, i t was, ah, just, ah, i t was, ah, wasn't a low pain; i t was a t i n g l i n g , sharp pain. . . . At f i r s t , I used to get the, ah, that pain, plus heart burn. And then, the heartburn started to go away. I just started getting the, the, ah, chest pain. . . . Once in a while I would get some numbness in my hands, 36 mostly this [ l e f t ] hand. Well, this pain, t h i s pain I used to get here in the chest, that tightness. Urn, i t come down my arms to here [indicates w r i s t s ] . The chest--oh yea. I'm t e l l i n g you, i t r e a l l y f e l t miserable. The heart pain t r i e d to strangle you, just get ahold and squeeze you. I was choking. I f e l t l i k e I was choking. Cl i e n t s ' accounts are similar to professional descriptions of angina. Health care l i t e r a t u r e has characterized the symptoms of coronary i n s u f f i c i e n c y as d u l l , aching , squeezing, pressing, heaviness in the sternum or choking in the throat--rarely as stabbing, throbbing or p u l s a t i l e (McGurn, 1981; Sanderson & Kurth, 1983). Radiation of the pain to the arms (usually the l e f t ) has been an accepted aspect of the i l l n e s s (Underhill, 1982). The l i t e r a t u r e has also recognized that anginal pain does vary s i g n i f i c a n t l y among people (Sanderson & Kurth, 1983). This professional perception would be borne out by the v a r i a b i l i t y expressed in c l i e n t s ' accounts. Although professionals believe that i t i s rare for c l i e n t s to experience no chest discomfort as a result of myocardial ischemia (Underhill, 1983), one participant did present with a t y p i c a l symptoms. I got this t e r r i b l e pain in my head, top of my head. 37 And i t hurt so bad. Thus, even with an extensive explanatory model about angina, professionals might have d i f f i c u l t y diagnosing and treating t h i s symptom. From c l i e n t s ' accounts, i t is apparent that they were i n t u i t i v e l y aware of the p o s s i b i l i t y that they might be i l l . They interpreted their symptoms as marking the beginning of their i l l n e s s . Mechanic (1962) has proposed a theory to explain how c l i e n t s attach meaning to bodily cues. Mechanic (1962) has argued that c l i e n t s perceive bodily cues to be symptoms of an i l l n e s s i f : (a) the i l l n e s s occurs frequently, (b) the population i s familiar with the i l l n e s s ' symptoms, (c) the outcome of the i l l n e s s can be predicted, and (d) the amount of threat and loss l i k e l y to result from the i l l n e s s i s high. In t h i s theory, interpretation of symptoms i s dependent upon c l i e n t s ' p r i o r knowledge and how they perceive the danger of the i l l n e s s . With coronary artery disease, professionals have considered that lay people's perception of the heart can i n t e r f e r e with an accurate estimation of the threat of the symptoms. Carnes (1971) and Levanthal (1982) have suggested that c l i e n t s associate the heart with love or courage, not the threat of an oxygen deprived myocardium. The tendency in the professional sector would be to question c l i e n t s ' a b i l i t i e s to accurately interpret bodily cues and estimate threat. However, from c l i e n t s ' accounts, i t is apparent that they were able to recognize i l l health. Although they may not necessarily have 38 associated their symptoms with heart disease, c l i e n t s s t i l l saw their symptoms as a mark of i l l health and deviation from "normal" physiologic function. In addition to r e a l i z i n g the significance of their bodily cues, the participants also t r i e d to understand what caused the symptoms. I wondered, gee, I wondered, "what's happening in there?", you know [laugh]. During their anginal episodes, c l i e n t s were cognitively trying to make sense of their perceptions. This aspect of angina has not been discussed in professional l i t e r a t u r e . In thinking about the causes of their symptoms, c l i e n t s used lay explanatory models. They did not relate their symptoms to having coronary artery disease but rather drew on past experience to help them make sense of their bodily cues. When my wife drove me to the hosp i t a l , and I'd been r e a l l y in agony for hours and hours and hours. And f i n a l l y I said to M [wife] that "I've got an ulcer and I'm a f r a i d i t ' s going to perforate." Ah, my dad had ulcer problems; that's why my mind was on t h i s . I just chalked i t up to too much coffee, you see, because I've had these pains years ago and doctors always told me, cut down on my coffee and cut i t out for a while. And I, you know, I, I went on Sanka for quite a while there and there was no more problems. And I started getting these pains again and I thought, 39 "Well, i t ' s the coffee." When they took me away in the ambulance, I was sure that i t was something l i k e my brother had had. That aneurysm [in the head]. Ah, ah, now everybody t e l l s me, well, I, I forget, you know, that some of my relations had heart troubles. But I never paid much attention, you know. They were old and I figured, well, their heart gave up; you had th i s wrong with their heart. Never paid too much attent ion. Even though c l i e n t s knew about "heart troubles", none of them attributed their symptoms to heart disease. From these accounts, i t i s apparent that c l i e n t s had unique ways of interpreting their symptoms. Although they realized that something was wrong with their bodies, they did not determine the true nature of their i l l n e s s . In their explanatory models, they related their subjective experience to their past. By comparing and matching their feelings of coronary i n s u f f i c i e n c y to other organ systems or to past experience, they were able to make sense of their feelings. Whereas the professional model would d i r e c t the care-giver to identify the physiological nature of the i l l n e s s , the lay perspective of the c l i e n t s resulted in an e n t i r e l y d i f f e r e n t approach. Only when the c l i e n t s sought out medical care and were diagnosed did they consider their symptoms could be cardiac in o r i g i n . 40 At the same time c l i e n t s were cognitively trying to make sense of bodily cues, they also were emotionally responding to their symptoms. The feelings which were predominant during the anginal episodes were that of fear and anxiety. I was damn scared. I was r e a l l y frightened, because I thought I was going to die. I f e l t l i k e I was going to die. . . . And I didn't want; I wasn't prepared to die and I thought I was going to. And that was very s t r e s s f u l . . . . and I thought i t was something that was gonna go on. There was a couple of times I was hoping I would die [to be] . . . free of the pain. One participant remarked, A l l the time I was never r e a l l y , ah, scared, you know. Afrai d or anything. But later in the interview, he remarked, Well i t [the angina] kinda worried me, a l l ri g h t . From the accounts, i t i s apparent that making sense of their bodily cues entailed dealing with two d i f f e r e n t aspects of the symptoms--the emotional as well as the cognitive. Fear and anxiety have frequently been mentioned as normal reactions to the unexpected threat of coronary disease (Cassem, Nelson & Rich, 1979; Cook, 1979; Cook, 1980; Croog, Levine & Lurie, 1968). The magnitude of the anxiety has been found to vary with previous cardiac history (Gentry & Haney, 1975). 41 Generally, professionals have tended to expect c l i e n t s to be anxious depending on their past experience and other variables. Based on c l i e n t s ' accounts, i t is apparent that t h i s professional perception is r e a l i s t i c . Although angina was the predominant presenting symptom, two c l i e n t s also experienced arrhythmias with their pain. The interplay between fear and awareness of bodily cues i s evident in their accounts. And then when I'd get these attacks, mind you, ah, which I found out l a t e r , could have been sudden death for me, I used to f e e l sometimes l i k e I wasn't going to make i t . And ah, but I always did. . . . My pulse used to be very e r r a t i c and i t would go, maybe three or four beats and then i t would stop and start again. And go faster and slower and i t was very chaotic, you might say. And I had these, ah, these f l i p - f l o p s , these, which i t turned out to be a t r i a l of [sic ] the nature. And, ah, supposedly some are self-induced by stress, i s that not correct, and others are caused by i r r i t a t i o n -i r r i t a b l e heart. Mine was a l i t t l e b i t of both. At that time, who knows, who knows where i t came out that time. . . . just an awful f e e l i n g . When you f e e l l i k e your heart may go out of control, and may stop; that's the way you feel about i t . So i t brings in that certain amount of ah, panic. Ah, whereas, you want to 42 get i t stopped. Slowed down a l i t t l e b i t . Corrected. . . . It just; i t was just when my heart was doing f l i p - f l o p s in there and, more i t did t h i s , the more, you know, upset I became. I just could not accept i t and say, th i s i s the way i t i s . Ah, I did that the f i r s t night that i t , that i t occurred up here [X City] in f u l l bloom. I went through the whole night with my heart just, not knowing whether I was gonna stop or go. Because the feelings were so unusual, the participants readily realized that their symptoms were s i g n i f i c a n t . The whole process of attaching meaning to their symptoms was a complex one for the par t i c i p a n t s . Not only did i t e n t a i l emotionally responding to the new feelings, but c l i e n t s also had to interpret their symptoms. Clients r e l i e d on their past experience to help them decide i f their symptoms warranted medical attention. Seeking Medical Care and Diagnosis After the c l i e n t s experienced their symptoms and made sense of them, they had a choice whether or not to seek medical care. Professional consultation and diagnosis was a benchmark in the i l l n e s s experience since i t revealed to the c l i e n t s that they were indeed i l l . The theme of making choices was f i r s t evident in r e l a t i o n to th i s benchmark. 43 Deciding to seek medical care. The decision to seek consultation for their symptoms was an individual one. There was var i a t i o n in when c l i e n t s chose to see physicians. Some participants sought out medical care immediately after their f i r s t symptom. And, ah, i t was, the f i r s t time was in 1975. I used to do a lot of t r a v e l l i n g . So I was on the road about an hour and a half from home, this happened to me . . . So I checked into the nearest hospital, and, ah, they ran an EKG, listened to my heart. Other participants waited u n t i l their symptoms became more frequent. Well, i t was, get bad, you see. . . . to a point where everytime I'd try to do something, I got these pains. So I gotta do something. One c l i e n t sought out medical care when advised by his boss to do so. We were going through a l o t of trouble at work, too. And, ah, ah, they decided they wanted to make some changes. Nothing r e a l l y to do with me d i r e c t l y . And, urn, they kept h i r i n g new bosses; they were going. But this woman that I knew for a long time came over to take over. And, ah, knowing each other for a long time, she was more interested in me as a person. And she i n s i s t e d , eh, M [wife]? That, that I do something. She says, "But you can't work. You," she 44 says, "your, your staff were t e r r i f i e d . You'd go in your o f f i c e and you were white as, as a ghost--in agony. And the g i r l s were a f r a i d to open the door and they think you're dead." Said, "You've got to do something, right now." And I said, said to her, "You're ri g h t . " It i s apparent that c l i e n t s elected to seek medical care after attempting to make sense of their bodily cues based on their own explanatory models. When their symptoms became a concern, they decided to seek professional help. How patients decide to seek medical care has been studied. Generally, professionals have agreed that deciding to see a physician depends on the c l i e n t ' s subjective experience and interpretation of symptoms (Croog & Levine, 1973; Gentry & Haney, 1975; Hackett & Cassem, 1969; Zola, 1978). Gentry (1979), King (1970) and Hackett and Cassem (1969) have suggested that choosing whether or not to seek professional help i s also a s o c i a l event. Factors such as presence of family, location and day of the week have been found to influence the c l i e n t ' s decision (Gentry, 1979). Zola (1978) has attempted to describe how c l i e n t s determined which bodily discomforts were s i g n i f i c a n t enough to warrant medical care. From his data, fiv e non-physiological patterns emerged which triggered the decision to seek professional treatment. Zola (1978) i d e n t i f i e d these as: (a) occurrence of an interpersonal c r i s i s which c a l l e d attention to the symptoms, (b) perceived interference with s o c i a l or personal 45 r e l a t i o n s , (c) sanctioning (someone else taking the primary r e s p o n s i b i l i t y for the decision), (d) perceived interference with work or physical a c t i v i t y , and (e) setting external time l i m i t s on the recurrence of symptoms or when to seek care. In his schema, both subjective and s o c i a l factors were important. Another way to conceptualize the decision process has been suggested by Moss, Wynar and Goldstein (1969). In t h i s theory, seeking medical aid was seen as a decision requiring three cognitive functions: (a) the perception of the presenting symptoms, (b) the appreciation of the meaning and seriousness of the symptoms, and (c) the r e a l i z a t i o n that medical help was indicated for the recognized and appropriately interpreted symptoms. Tuckett (1976) has constructed a similar framework where he proposed that c l i e n t s recognize, define and act on symptoms. In both theories, professionals have characterized c l i e n t s as r a t i o n a l problem-solvers. In a study of c l i e n t s deciding whether or not to undergo surgery for stroke prevention, Sayner (1982) has developed a framework to explain the process of decision-making. In her theory, c l i e n t s moved through five passages prior to making a decision--threat, trust, holding, contemplation and compliance. For Sayner's study group, trust in the medical team was a recurring factor in the decision-making process (Sayner, 1982). Generally, then, professionals have explained how c l i e n t s chose to seek medical care based on d i f f e r i n g variables. Perhaps the lack of a clear-cut theory to explain this aspect of c l i e n t behavior is indicative of the uniqueness of decision-46 making. In addition to deciding whether or not to seek medical care, c l i e n t s also t r i e d to make sense of the diagnostic process. Putting their medical care into perspective enabled them to better understand this important benchmark. Clie n t s ' perceptions of their medical care. After c l i e n t s sought out medical care, they expressed their feelings about the diagnostic process and treatment. One c l i e n t with at y p i c a l presenting symptoms described a situation where the physicians disagreed with his b e l i e f s about his i l l n e s s . I was, ah, I kept feeling r e a l l y good and ready to go to work. And thi s would come upon me. And, ah, one morning I just, I just had to go to the doctor. And I said, "Can you make room to see me? I got a real problem." 'Cause I f e l t l i k e I was gonna pass out, you know. . . . 'Cause I couldn't breathe, and, ah, I went down there. Once again, he had an EKG in his o f f i c e and he ran a s t r i p o f f . He read i t , and, ah, went through these things including knocking the knees. And he said, "I t e l l you what, B," he said. "I think the whole thing i s in your head." . . . It made me so damn mad, I didn't go back to him for months. For any reason, even though I f e l t bad at times. . . . Well, I didn't know. I didn't know what 47 i t was. Whether--I just knew that I was having c i r c u l a t i o n problems. . . . or I wouldn't be feeling l i k e t h i s . The discrepancy between the c l i e n t ' s view of his i l l n e s s and that of his doctor is apparent. The participant had interpreted his symptoms as being i l l ; using professional explanatory models, the doctor disagreed. The lack of a diagnosis as a benchmark created c o n f l i c t for the c l i e n t . He perceived he was i l l but there was no professional support for his b e l i e f s . The same c l i e n t also was confused over c o n f l i c t i n g medical opinions. My doctor got so fed up with me comin' in there, he f i n a l l y referred me to a s p e c i a l i s t who came down from X City--one of these hot-shot c a r d i o l o g i s t s that, ah, knows i t a l l . And he set up a c l i n i c in our l i t t l e town up there; he was, was there twice a week. This guy, doing the same thing, only, supposedly better. 'Cause, say, X City, where a l l these magnificient things are done. . . . And so, my doctor referred me to him. Now I don't know what my doctor t o l d him. I only have a suspicion that my doctor said, "This guy-i t ' s in his head, I think. But could you, would you take a look at him please?" I don't know this for a fact; I just know human nature. So, he gave me the fast once over. . . . This doctor, t h i s guy from X City—when I told him that I had, ah, was to l d by this 48 other doctor--I think, they just t r i e d to find something to s a t i s f y my l i t t l e chest pains and my problem. Told me that I had a c l i c k i n g of, ah, thi s p a r t i c u l a r valve. And I to l d him that and he said, "No way." He said, "You don't, you don't have such a thing." I said, "Well, Dr. so and so . . . ". He said, "Well, " he said, "I dunno," he said. I said, "This was a mis', misdiagnosis." He said, "Well, l e t ' s not c a l l i t that, s h a l l we?" He said, "I trained Dr. E. how to, how to read these machines and these things. But l e t ' s not c a l l i t a misdiagnosis, sh a l l we?" Jesus, they stick together. Like thieves, you know. Some of them. The problem of d i f f e r i n g medical opinions and methods of treatment has been studied (Baker & McCoy, 1979). Of the seven participants enrolled in a cardiac exercise program, c l i e n t s were found to perceive that d i f f e r e n t medical opinions were a common source of c o n f l i c t . To resolve t h i s c o n f l i c t , Baker & McCoy (1979) found that c l i e n t s s e l e c t i v e l y listened, chose the answers which they agreed with and developed a trusting r e l a t i o n s h i p with their physicians. For the participant who perceived c o n f l i c t in diagnosis, he did not appear to resolve his c o n f l i c t in the ways i d e n t i f i e d by Baker and McCoy (1979). Instead, the c l i e n t made sense of the c o n f l i c t in his experience with medical care by suggesting improvements. The doctors should not be allowed one answer that solves the whole problem, a l l their problems, l i k e , 49 " I t ' s , i t ' s nerves. It's just the condition of the world today. We're a l l nervous. It's a nervous world. You gotta case of the nerves buddy. You just think you're having what you're having. We'll see you l a t e r . Here's your b i l l for twenty-five d o l l a r s " . . . . That's why there must be a medical answer to the problem. One, when we've read our cute l i t t l e s t r i p s out of l i t t l e EKG, ECG's; after we've read that and the guy seems l i k e , he's, you know, a perfect specimen of a man, and he's s t i l l having symptoms of possible problems or heart attacks, there must be something else we can do. And i f , i f i t ' s , angiogram i s [ s i c ] costs too much money or i t ' s too much trouble, or i t ' s unavailable, l e t ' s invent something else that w i l l t e l l us that this guy has blockage of his a r t e r i e s . . . . You see, there's got to be a clue to these guys. Or a way. In t h i s account, the c l i e n t ' s f r u s t r a t i o n with the inaccuracy of the diagnostic process is apparent. He appears to be arguing that professional explanatory models need to be made more precise. When a diagnosis was f i n a l l y made, the benchmark was ant iclimact i c . The doctor on, the doctor on duty in Emergency came around and proudly announced; he was overjoyed, in fact. "You s i r , are having a cardiac arrest!" And I thought, "Geez, thanks for the good news," you know. Instead of him just getting me up there and they were 50 gonna work on me, he announces so proudly. They've found out f i n a l l y what the h e l l I was there for. In order to make sense of his experience with this benchmark, the c l i e n t allocated blame for the treatment he received. And, ah, but, ah, I, I just think that, ah, due to the fact that there i s such a shortage of medical people and I think X City, maybe i t ' s everywhere. Maybe, maybe, maybe i t ' s just that they don't have time to r e a l l y help you. Croog and Levine (1973) have found that c l i e n t s recovering from myocardial infarctions often perceived that communication problems exist between patients and physicians regarding the diagnosis and treatment plan. In their study, c l i e n t s commonly stated that physicians were too busy, too unapproachable or too unconcerned for them. This c o n f l i c t e d with M i l l e r ' s findings that the health team was consistently viewed as helpful to the c l i e n t s through action and instruction ( M i l l e r , 1981). Clients used their contact with the professional sector to find out more information about their i l l n e s s . The kind of care they received affected how they f e l t and how they perceived their i l l n e s s . One c l i e n t f e l t that the inadequate care r e f l e c t e d that his i l l n e s s was worsening. Then I got this other doctor. And, uh, my treatment just went downhill. And I was going downhill with i t , and, you know. I figured, well, i f the doctor doesn't seem to know what to do, there's nothing that can be done. 51 Croog, Levine and Lurie (1968) have suggested that physician's attitudes can affe c t the cardiac patient's recovery. They believe that c l i e n t s can interpret clues furnished by the physician to mean pessimism about their s i t u a t i o n . For this participant, his doctor's attitude toward care did affect his perception of his i l l n e s s . When the c l i e n t changed doctors, he f e l t there was an improvement in his care and his condition. I was c e r t a i n l y pleased'when I saw Dr. X. Yes. . . . as soon as I went in to see her, I just l i k e d her. And she had, ah, a nice, a nice friendly attitude and competent attitude. And, ah, then I noticed that we both came from the same area, which gave [sic made] me feel better. We both came from X City, within a few blocks of one another. And, urn, I thought that she looked after me very well, eh, M [wife]? She started me on proper medicines, and, urn, i t was amazing the change. It i s apparent that the kind of medical treatment affected how c l i e n t s saw progress and improvement in their condition. In addition to understanding their medical care, t h i s benchmark also resulted in c l i e n t s making sense of the diagnosis of their i l l n e s s . Because they had new information from professional explanatory models, their view of their i l l n e s s and i t s course underwent change. 52 Coping with the diagnosis. The diagnosis of the i l l n e s s was perceived as a s i g n i f i c a n t event in c l i e n t s ' i l l n e s s experiences. F i e l d (1976) has proposed that the attachment of a diagnostic label i s not an unimportant event. Rather, the label serves to legitimate the status of the sick person as i l l while releasing him or her from s o c i a l obligation. Labelling also structures behavior because i t d i r e c t s the i l l and healthy toward s o c i a l l y appropriate attitudes and actions ( F i e l d , 1976). When c l i e n t s learned the causes of their symptoms, they i n i t i a l l y coped by denying that they had coronary artery disease. I always; never occurred to me that I'd have heart trouble. And ah, when I went to a s p e c i a l i s t and he, and ah, he said, he says, " i t sounds l i k e your heart." I said, "well, i t can't be", I says. "I've got thi s hernia. Everytime I eat", I said, "I've, I get these pains. And ah, even when I, ah, when only time when they go away i s when I l i e down." The c l i e n t s continued to rely on past experience rather than professional explanations to make sense of their i l l n e s s . The use of denial has been portrayed in the l i t e r a t u r e as a common way people cope with anxiety by reducing the threat (Burke, 1981; Cook, 1979; Hackett & Cassem, 1969; Kiening, 1978; Olin & Hackett, 1964; S c a l z i , 1973). Professionals believe that c l i e n t s follow a c h a r a c t e r i s t i c pattern in responding to the 53 threat of myocardial i n f a r c t i o n which includes denial, anger, anxiety, regression and depression (Cook, 1980; S c a l z i , 1973). Although Mechanic's theory of i l l n e s s recognition has suggested that f a m i l i a r i t y with the i l l n e s s reduces denial (Mechanic, 1962), Olin and Hackett (1964) would not support his view. Even when c l i e n t s were familiar with symptoms of coronary disease, i t was found that they s t i l l a ttributed i t to something other than the heart (Olin & Hackett, 1964). To explain this phenomenon, Abram (1969) and Kiening (1978) have proposed that denial i s an expected defense mechanism u t i l i z e d by a l l c l i e n t s in order to resolve c o n f l i c t and preserve a concept of oneself as healthy. Regardless of one's prior experience, then, denial has been conceptualized as a natural coping strategy. One c l i e n t explained why he did not at t r i b u t e his symptoms to angina. Well, I guess that [believing the pains were due to an ulcer] was a l i t t l e better than a heart attack, eh? Denial, thus was an e f f e c t i v e way to cope. When the c l i e n t s began to r e a l i z e they had heart disease and what effect the i l l n e s s would have on their l i v e s , they attempted to incorporate the professional explanatory models into their own. The meaning they attached to the symptoms changed as well as how they f e l t about their i l l n e s s . They now perceived their i l l n e s s in terms of heart disease. I, I, I sort of half-expected to have a heart attack at any time. 54 I guess I was pretty anxious. Because I didn't know where i t was a l l going to lead. As time passed, the c l i e n t s became aware of the progressive and p o t e n t i a l l y f a t a l nature of their i l l n e s s . They recognized that their i l l n e s s was a threat. They were also aware that the i l l n e s s would worsen and that no "cure" was avai l a b l e . Oh, I'd knew they'd [the symptoms] get worse. . . . I recognized i t was serious. Yes. I didn't think much could be done about i t , though. I r e a l i z e that I ' l l always have coronary artery disease. . . . I could have the same problem again and probably w i l l because I don't think that [CABG] stops the disease. . . . And i t ' l l [coronary artery disease] probably, i t ' l l come back again. And i t ' s probably what eventually I ' l l go from. But then of course i t ' s taken a l l these years to build up. I don't have that much time l e f t , I r e a l l y don't think. So, I don't know, you see. From these accounts i t i s apparent that c l i e n t s used information from professional explanatory models in order to anticipate the course of their i l l n e s s . They did not perceive improvement in their condition but, rather, a worsening trend. As a benchmark, the diagnosis of their i l l n e s s was valuable in helping the c l i e n t s make sense of their i l l n e s s . Once c l i e n t s incorporated professional explanatory models into their own, they seemed to accept the i l l n e s s and i t s 55 ramifications on their l i v e s . In the professional l i t e r a t u r e about emotional responses to myocardial i n f a r c t i o n , S c a l z i (1973) has described this acceptance as moving from denial, shock and d i s b e l i e f to developing awareness and resolution. In their accounts, the c l i e n t s expressed their f a t a l i s t i c attitude about their i l l n e s s . The theme of hope appeared in th i s phase as a way c l i e n t s accepted their i l l n e s s . Although the uncertainty of the disease's extent and pervasive e f f e c t s on their l i v e s may have l e f t them feeling hopeless, none remarked that they f e l t hopeless. Rather, their attitude would appear to be matter-of-fact and accepting. In one participant's statement of his prognosis, i t i s apparent that he s t i l l hoped that medical treatment would help him improve. "I thought either I was going to get better or die, you know." The theme of trust was also a means to cope. Professionals have tended to describe c l i e n t s with coronary artery disease as feeling hopeless or depressed (Cassem & Hackett, 1973; Cook, 1979; Cook, 1980). This depression has been hypothesized to result from c l i e n t s r e a l i z i n g that their heart is damaged and the implications this has on c u r t a i l i n g their l i v e s (Cassem & Hackett, 1973; Cook, 1979; Cook, 1980). Foster and Andreoli (1970) have argued that c l i e n t s who have suffered myocardial i n f a r c t s normally grieve their loss of health and adopt a hopeless attitude. Other losses related to the self concept have also been proposed to further create hopelessness (Carnes, 1971). Granger (1974) has argued that the f a t a l i s t i c attitude of giving up is r e a l l y another aspect of 56 denial. In any case, hope would seem to be portrayed as a means to manage the i l l n e s s even though i t s intensity may vary. Lange (1978) has postulated that hope exists as a continuum ranging from despair to f a i t h . If t h i s i s so, then c l i e n t s ' acceptance may be one aspect of the hope continuum. In addition to being hopeful, c l i e n t s also coped with their diagnosis by testing themselves. One c l i e n t described how she went about confirming i f her angina would recur. I was to go on Tuesday for t h i s , ah, for t h i s electrocardiogram. And on Monday, I f e l t great. I was . . . oh, Sunday, we had company for dinner on Sunday. And our stove went haywire. It was something wrong with the fuse in the oven. I was cooking a chicken. And I l e f t i t quite late because I had i t in, in the oven an hour before, ' t i l I discovered i t wasn't even--the oven wasn't working. The chicken was cold. So we went down to the Rec' Room, down the h a l l . And I put i t in the oven there. And I kept going back and forth. And I tested myself to see, am I going to have another one of those attacks? And I did, I went as fast as I could. And I was just running. And I f e l t great. For t h i s participant, the testing served a useful purpose in helping her cope with the r e a l i z a t i o n that she may have heart disease. She saw progress and improvement in her i l l n e s s by the absence of symptoms. The testing may also have helped her retain some hope that her i l l n e s s was not so serious after a l l . 57 Once the c l i e n t s had coped with their diagnosis, they continued to try to make sense of their i l l n e s s . Instead of non-specific bodily cues, they now had a diagnosed i l l n e s s to understand and incorporate into their l i v e s . Making sense of their diagnosed i l l n e s s . The ways c l i e n t s made sense of their i l l n e s s and searched for reasons behind their disease were varied. Most c l i e n t s tended to connect their symptoms to concrete factors. Pathophysiology was not mentioned as a factor in the appearance of angina. Typical of the kind of connections made were the following accounts. Two c l i e n t s f e l t general health was a factor in their i l l n e s s . And then I was in pretty bad shape there for a while — that i s , I was overweight, extremely overweight. I thought i t [angina] [was due to] the lack of exerc i se. Psychological feelings and stress were f e l t relevant by three pa r t i c i p a n t s . I think quite often i t could have been nerves, just stress and tension—excitement. . . Part of i t could have been just nerves, or just fear and fear does t e r r i b l e things to people. 58 It's funny, you know. And then, or sometimes I'd get to the far corner [walking] and, ah, i t would, ah, I'd have i t there--the pain. And then, on my way home, i t would disappear. It wouldn't bother me. . . . It'd be funny. Maybe, because I'm going home and, ah, I dunno. Psychological, psychological, I guess. Three c l i e n t s associated the angina with the l e v e l of a c t i v i t y . But, ah, i t was always when I was doing something. Not when I was driving or, ah, just relaxing. Professionals would agree that coronary i n s u f f i c i e n c y can be prec i p i t a t e d by the events i d e n t i f i e d by the c l i e n t s . Sedentariness, stress and the "Type A" personality have been described as factors which increase the risk of developing atherosclerosis (Jenkins, 1979; Sca l z i & Burke, 1982). The accounts indicate that c l i e n t s understood the causes of their i l l n e s s in their own terms. Although elements of the professional explanatory models are present, the c l i e n t s interpreted these in a popular manner. .Clients described concrete behaviors or aspects of their l i f e s t y l e which were perceived as causative factors. Biochemistry and pathophysiology were not perceived to be as s i g n i f i c a n t in their explanatory models as in professionals'. I think, one, i s heredity. And I think the other i s the heredity and I've got very small blood vessels. . . . And I guess the other thing i s I worked awfully 59 hard. I didn't take proper recreation. And I l e t my weight get out of hand. . . . that brought i t on. I got high blood pressure which led to the, to the disease. . . .I'm not too sure i t could have been prevented, you know. Dietary habits were perceived to be the major contributing factors in the i l l n e s s . I think i t does go back. Because, ah, as far as nervous, I don't think I was that nervous. Or, or, high strung. . . . Like, ah, l i k e they say, you know, you, hypertension or whatever i t is they want. I don't think I, I, I was that way. So I think, I think, ah, myself at least a good 80% of the food I ate . . . ah, I dunno how much hereditary i t could be. But i t was, ah, i f i t was anything at a l l , i t was probably poor eating habits'as a youngster. . . 'Cause you don't get the blockages that I had overnight. Other l i f e s t y l e factors were mentioned as harbingers of i l l n e s s . If I had not of, ah, smoked a l l those years. If I had taken better care of myself when I thought I was taking care of myself, in pretty good shape. I was just pushing my body to the l i m i t . No, I was st u f f i n g i t f u l l of bad f u e l . It i s apparent the participants made sense of their i l l n e s s through drawing on information from professional explanatory models. However, one c l i e n t did not understand his i l l n e s s in 60 t h i s manner. He was not able to a r t i c u l a t e what might have caused his i l l n e s s . "I couldn't even give you a clue why i t started." When participants did relate their i l l n e s s to pathophysiology, the popular flavour of their explanations was apparent. In the next account, the intermingling of the popular and professional models is again evident. After I found out that i t was my descending v e n t r i c l e , the most important, well, the, the aortic arch is actually the most important, isn't i t ? But the descending sends the clean blood through your body, and i t wasn't pumping r i g h t . Although a professional would disagree with this c l i e n t ' s description of anatomy, i t was the c l i e n t ' s understanding of what caused her i l l n e s s . Winslow and MacVaugh (1976) have argued that c l i e n t s have a dis t o r t e d idea about their cardiac anatomy. Abundant l i t e r a t u r e exists on the pathologic basis of coronary disease and atherogenesis (Braunwald, 1980). However, thi s emphasis i s not apparent in participants' accounts. The popular explanatory models, instead, more clos e l y resemble public education e f f o r t s aimed at risk factor modification in heart disease. These programs have emphasized that concrete behaviors such as age, sex, heredity, weight, smoking, exercise, diet and blood pressure can cause coronary artery disease (Wiley, 1980). These are similar to the factors i d e n t i f i e d by the c l i e n t s as relevant in the development of their i l l n e s s . C l i e n t s also made sense of their i l l n e s s by reading or 61 speaking to other i l l people. One c l i e n t sought out further information about one of his medications, an experimental ant icoagulant. I thought, you know, the dindevin would help me. But, ah, some other theory, some other people, they not agree with that. . . But I talked to . . . my brother. Yea, he i s ah surgery [ s i c ] in X Country. Ah, he is quite well known. Yea, ah, I, I, I, wrote to him. He would know about dindevin. In order to make sense of the rel a t i o n s h i p between this medication and his i l l n e s s , the c l i e n t sought out professional explanatory models. Thus, in making sense of their i l l n e s s , c l i e n t s adapted aspects of the professional explanatory models to help them understand. This enabled them to manage their i l l n e s s and see improvement in their condition. Managing their diagnosed i l l n e s s . Once c l i e n t s had attached meaning to th e i r symptoms and made sense of their i l l n e s s , they devised ways to cope with i t . The theme of the uniqueness of coping strategies f i r s t appeared in t h i s phase. Although c l i e n t s managed t h e i r symptoms and i l l n e s s in unique ways, some coping strategies arose from the professional sector. Taking n i t r o g l y c e r i n , for example, was common to a l l participants. However, the manner in which 62 n i t r o g l y c e r i n was taken varied considerably in terms of amount and timing. So, I, I never usually had to take more than four an hour. Take a couple and relieve i t enough just to where I wasn't too concerned. Then I would come back and I'd take a couple more. Before long, you'd taken ten or f i f t e e n . . . . Then i t began to, to make you worry or . . . I had to go and see her [neighbour]. And she came in here and took my nitro's out of the freezer, out of the ' f r i g , I should say, where I s t i l l keep them. And, ah, and gave me a couple. And, ah, one, about ten minutes apart. And I started to; my pulse started to s e t t l e down and I was fi n e . Sometimes I would take i t , just when i t started, then I'd, I'd take one. And especially when I got a long way to go, and I would take one soon's i t came, came up on me. But most of the time, I would wait for i t to, ah, r e a l l y , got, you know, r e a l l y started to burn, then I would take one. Well, when, sometimes, ah, when I would get pain, pains in my l e f t arm and in my arm p i t and, ah, and, ah, in my head sometimes and a l o t t a times I just couldn't breathe. There were times when I had no 63 pain, no discernable angina and I would take, ah, ni t r o ' , just so I could breathe. The c l i e n t s judged, themselves, when to take n i t r o g l y c e r i n and how often. They individualized their use of n i t r o g l y c e r i n according to their own perceptions of pain and the usefulness of the medication to relieve i t . Again, their decisions seem related to how serious they perceived the i l l n e s s to be and the par t i c u l a r anginal episode. One c l i e n t who was hospitalized managed his own ni t r o g l y c e r i n therapy. Now, at f i r s t , they took i t [nitroglycerin] away. "If you need one, ask the nurse. That way we know how often you're getting the pains." But then, after a day or two, I said, "Well, why can't I have my own? Why can't I keep them in my pocket?" And they said, "Yea, you're rig h t . " They gave 'em back to me. Although most c l i e n t s recognized the value of this medication in c o n t r o l l i n g their symptoms, two remarked that they "didn't l i k e taking n i t r o ' . " One thought i t was better to ride out the chest pain. He explained his reluctance to take n i t r o g l y c e r i n in the following way. And, I don't know why I didn't take a, a, n i t r o g l y c e r i n . And half the time I had the n i t r o ' so long, i t would be no good and I wouldn't know that. They [pharmacists] didn't know that. They'd s e l l me a dozen n i t r o ' in a l i t t l e bottle . . . . Yea. And i f I'd only known just by taking some n i t r o ' p i l l s , i t would have gone. But, usually, I'd l e t the pain go 64 too long and I'd take the n i t r o ' and i t wouldn't work. Instead of taking the n i t r o ' at the beginning, and again, I was under the impression that I shouldn't be taking the n i t r o ' p i l l s , that they were--it was good not to take them . . . . No, I didn't want [to] take my n i t r o ' 'cause i t gave me migraines. . . . which was a mistake. I should have been taking them. . . . And I started taking the n i t r o ' when I found out I could get one two hundred [1/200 grains]. And then as the nit r o ' got older, i t would be, get weaker and i t didn't take much to get r i d of i t . And so then I found I could take i t without getting a headache. . . . I s t i l l r e a l l y didn't, up u n t i l l a s t , I r e a l l y didn't use the n i t r o ' p i l l s properly. Even when he rea l i z e d the value of using n i t r o g l y c e r i n , the previous practice was almost i n s t i n c t u a l . Just got that hot flush, got a l i t t l e angina. I didn't want to take a n i t r o ' p i l l , but they gave me one anyways. Again, I s t i l l resisted that. . . . I think I ' l l do that the rest of my l i f e , eh M [wife]? That was so ingrained in me, you see. Another c l i e n t also perceived that i t was b e n e f i c i a l to postpone taking the p i l l s for as long as possible. But for some reason, I would put off taking them. Like I didn't l i k e to start taking them in the afternoon. Just cause I got a l i t t l e pain in my arm. I would wait' 1 1 I got several pains or maybe a harder 65 one. Then I'd start taking them. . . . I, that's just, ah, that's just a matter of being ignorant, r e a l l y . Because, I f e l t that, you know, once I got on the n i t r o ' s , I would have to be on the nitro's to ex i s t , a l l the time. These two c l i e n t s ' accounts demonstrate that use of n i t r o g l y c e r i n e n t a i l s more than just complying with medical orders, but rather a complex process of weighing pro's and con's (concrete situations) and making decisions. The value of the drug would also seem to be in terms of concrete symptom r e l i e f , not pharmacologic p r i n c i p l e s . Because c l i e n t s understood this medication in concrete ways, i t s use can lead to misconceptions as described by one participant. And the odd time, I would; th i s one thing that confused me. When I would take a n i t r o ' , I would seem to get a movement of gas. And that seemed to relieve me. And that's why I kept thinking i t was my stomach. And somehow I got the idea that n i t r o ' would help your stomach [laugh]. . . . Fact, I think i t ' s a defense mechanism. You don't wanta, you don't wanta believe i t ' s your heart. The c l i e n t s described the action of n i t r o ' in terms of symptom r e l i e f . Only two explained their understanding in physiologic p r i n c i p l e s . One participant stated i t s action as "release, you know, the blood vessel." Another explained i t in th i s way. Well, ah, Dr. X explained the n i t r o ' p i l l . What i t 66 does, i t makes your heart beat faster again [rhythmically beats f i s t s together]. And those other p i l l s [Inderal], those, they, that widen your, stretch your a r t e r i e s or something l i k e that. So your blood can go through. And then when you took a n i t r o ' , i t just made that o l ' heart just pound away real good. Professionals would disagree with the c l i e n t ' s explanation of the action of n i t r o g l y c e r i n and Inderal in l i e u of a pharmacologic model. In professional explanatory models, ni t r o g l y c e r i n is the vasodilating agent while Inderal tends to lower the heart rate (Burke, 1982; Felthous & Underhill, 1982). Again, the c l i e n t ' s way of making sense of medical treatment intermingled professional and popular explanatory models. Clients learned about n i t r o g l y c e r i n primarily through their physic ians. The doctor t o l d me that they were actually good for your heart. Especially when your heart wasn't getting enough oxygen. And, ah, to not be a f r a i d to use them. And that you could use up to 40 a day. But that i f you used over three or four, you should c a l l your doctor because, ah, you maybe have something that's sta r t i n g up. However, the amount of information received about n i t r o g l y c e r i n was not always perceived to be s u f f i c i e n t . And I think that, that the doctors could explain i t to the patients a lot better about n i t r o ' . I didn't understand. And I thought i t wasn't good to take i t . 67 This c l i e n t f e l t he needed more information in order to make sense of his i l l n e s s and manage i t . In addition to n i t r o g l y c e r i n , c l i e n t s were also placed on medications of various types in an e f f o r t to control their symptoms. Their understanding of these medications is evident in the following accounts. And that's when he put me on, ah, Cardizem which has only been on the market for two years. And I was a l l e r g i c to the beta blocker, i n c i d e n t a l l y . I had an attack of asthma at the hospital and found out later i t was beta blocker. And so he put me on the Cardizem. And after that I didn't have to take so many n i t r o ' s . They put me on, urn, Inderal. And that kept i t [pulse] steady. But I found that when I needed the reserve, my pulse rate wouldn't go up. . . . When I did a c t i v i t y , i t wouldn't go up. And so i t [Inderal] had disadvantages, too. I was on Inderal for years u n t i l Dr., ah, Y changed me to Corgard. And she changed me to Corgard 'cause I was getting a lot of nightmares. And that's the only reason she took me off Inderal. . . . i t might not have been the Inderal. But I responded well to the Corgard. And I responded well to the Dyazide. It keeps my blood pressure [down] and doesn't make me 68 i l l . Throughout the accounts, i t is apparent that the c l i e n t s drew heavily on the professional explanatory models to manage their medication regime. They perceived the medications to be be n e f i c i a l since their symptoms had abated. In addition to using medication to manage their angina, c l i e n t s routinely attempted to reduce their level of a c t i v i t y and rest. I just sat on the side of my bed, or some nights, I'd s i t up on that chair a l l night. Yea. Just wrap blankets around me and wait to die. I noticed that when I was getting some pain, I was taking my pulse and I noticed my pulse was always around a hundred. So I'd try and do everything I could to lower my pulse. Rest or whatever. And I'd have to walk up a h i l l to either to my car or catch a bus. And, ah, I'd miss l i g h t s and rest. Then I'd cross over the street and miss another l i g h t . And I'd rest and then, then I'd start climbing up that h i l l . And then about halfways up, I'd lean up against the building. Cl i e n t s also made e f f o r t s to c u r t a i l their usual a c t i v i t i e s . Well, at work, I, I, I, ah, mind you, I had a helper. But, I, ah, I wouldn't walk around as much. And I, 69 ah, I wouldn't l i f t as much as I normally do. And, ah, I used to walk upstairs, the second f l o o r , t h i r d f l o o r , I'd walk up. And then, after that I started taking the elevator . . . I just knew i t in myself; I should cut back. I think we led a pretty normal l i f e , eh M [w'ife]? There'd be things I would be careful about. And i t used to annoy me, l i k e when my son grew up and l e f t home, and, and l i k e M would have to do the lawn. I didn't l i k e that. And we couldn't get anybody to come and mow the lawn. And I couldn't mow the lawn or things l i k e that. C l i e n t s found a reduction in.the l e v e l of a c t i v i t y helpful in managing their anginal episodes. This was perceived as a useful way to reduce the symptoms of their i l l n e s s , and therefore helped them to feel more healthy. In addition to changes in a c t i v i t y , c l i e n t s also decided to a l t e r their d i e t s . At that time, you know, I, since, ah, 1974, I was very careful to take any foodstuffs. . . . It was, ah, you know, some, ah, cholesterol content, oh everything. C l i e n t s perceived that changing their eating habits would halt the progression of their i l l n e s s . During the early phase of their i l l n e s s when c l i e n t s were attempting to interpret and manage their symptoms, they seemed w i l l i n g to make changes with their l i f e and follow their 70 doctors' treatment plans. However, these l i f e s t y l e changes were not always permanent. One participant explained. I did [change] for a while, but I think we went back, eh, M [wife] to our old habits? I think so. Professional l i t e r a t u r e on patient compliance with drug therapy and l i f e s t y l e change i s abundant. Various factors have been examined to predict compliance--demographic, i l l n e s s and social-psychological variables (Marston, 1970). Different theories have been proposed to explain compliance, for example, locus of control (Arakelian, 1980) and the health be l i e f model (Becker, 1976). However, no clear understanding exists to explain compliant or adherent behavior. For the participants in th i s study, compliant behavior seems to have occurred when the c l i e n t s perceived the medical regime reduced the anginal episodes and improved their condition. Although c l i e n t s attempted to adhere to medical regimes prescribed for them, they also managed their i l l n e s s by drawing on their own resources. S p i r i t u a l f a i t h helped one c l i e n t cope with his i l l n e s s . But then after t h i s heart attack, 1974, I changed a l l my l i f e . . . . And then everything, you know, depend on God. And then, in [sic i f ] something happen, quite serious, you know, up [sic increase] in my pain. I just only pray to God. . . . Nothing to be worried. This c h a r a c t e r i s t i c way of coping was a valuable way to manage the i l l n e s s . Another c l i e n t u t i l i z e d his own coping strategy to manage 71 his i l l n e s s and carry on his l i f e . He t r i e d to avoid thinking about his i l l n e s s . I know my wife used to get after me and say, "now don't think about i t , l i k e that. Because that's giving you stress." And she says, you know, she'd say, "don't, don't", you know. "Think of something else. Think pleasant thoughts", you know. . . . But sometimes i t would work and sometimes i t wouldn't. And then you, and then at night, now i t ' s quiet and you wait, especially when you wake up, you know, I f a l l asleep right away. But then, in two hours I wake up. And then, then I just l i e there. And next thing, everything magnifies, you know, and, ah, then I start thinking of everything. I didn't think about i t most of the time ' t i l I had pa in . Well, I didn't think about i t because I, I knew you know, the doctors, they just said, well, "just take the n i t r o ' . " And, ah, I guess I didn't, I dunno. I figured, well, I'm going into the hosp i t a l . And, ah, so I figured, well, something , something I l i v e d with. Thus, c l i e n t s made sense of their i l l n e s s and managed i t in ways unique to them. They drew on past experience and c h a r a c t e r i s t i c strategies to help them cope. 72 That c l i e n t s were able to manage their i l l n e s s in complex ways is evident in one account. Here problem-solving enabled the c l i e n t to reduce the frequency of the anginal episodes while in h o s p i t a l . When I started getting these angina pains, I knew, ah, l i k e , ah, soon's I went over [bends down and mimics scrubbing lower le g s ] , I started gettin' these pains, you see. I got these darn pains. So, ah, I told the nurse, you know. "Everytime I come out [of the shower]," I said, " I wanna n i t r o ' . " Because I got this pain. . . . I started washin' my legs, you know, and then I saw a stool outside. And I thought, "I'm gonna use that for, in the shower. I ' l l s i t on that." When I wanna wash my feet and legs, you know. . . . I told the nurse what I was gonna do. She said, "That's a good idea." So I took, put the shower on. . . .1 put i t on, get myself a l l set. I'd reach over and get that stool, s i t down, turn the water on and then I'd st a r t . I'm a l l wet now, I star t doin' my legs. And when I was f i n i s h i n g doing a l l my legs and that, I just stand up, put the stool out, out of my way. . . . And then s t i l l , keep on soapin' myself, washin' myself and then I would turn the water on, and rinse myself o f f . Although he could not explain the physiologic basis for his actions, his commonsense approach allowed him to anticipate his needs and act appropriately. He had made sense of his i l l n e s s 73 and decided how he would manage i t . Clients were not alone in choosing what coping strategies would help them manage their i l l n e s s . For a l l the c l i e n t s , families and spouses were seen as h e l p f u l . The theme of the shared nature of i l l n e s s was evident in the many c l i e n t references to spousal or f a m i l i a l support. Well, ah, I started c u t t i n ' back a l i t t l e b i t a l l right. She [wife] was c u t t i n ' back on me. . . . She started c u t t i n ' , you know. "You're only gonna get t h i s , " and "you're only gonna get that." She would, ah, grab my hand when I would grab the s a l t shaker. And, "That's enough," you know. Cut back a l i t t l e b i t , yea. The family's role in the i l l n e s s has been studied from various perspectives. Protective behavior on the part of spouses has been a common finding (Wishnie, Hackett & Cassem, 1971). Tyzenhouse (1973) found that there was no re l a t i o n between the wife's knowledge about her husband's coronary artery disease and the c l i e n t ' s recovery or family s t a b i l i t y . However, M i l l e r (1981) found that c l i e n t s perceived family concern and support systems were h e l p f u l . Although the exact relationship between family support and c l i e n t recovery i s not f u l l y known, professionals do view the support network as having an important role in helping the c l i e n t emotionally through treatment (Monteiro, 1979). As the c l i e n t s moved through the f i r s t two benchmarks of th i s phase, they learned how to cope with their i l l n e s s . 74 However, because ischemic heart disease i s not s t a t i c , they also had to deal with i t s progressive nature. As the anginal episodes increased in severity or frequency, c l i e n t s also had to cope with the worsening of their i l l n e s s . The Worsening of the Il l n e s s Being aware of bodily cues and having attached meaning to them, the c l i e n t s were able to monitor the nature and severity of their symptoms. They knew that their i l l n e s s was worsening. During t h i s phase of the i l l n e s s experience, the theme of determining progress made i t s f i r s t appearance. However, instead of ascertaining that they were progressing toward health (getting better), c l i e n t s found their i l l n e s s worsening. Making sense of changes in their i l l n e s s . C l i e n t s perceived that their i l l n e s s was worsening because the anginal episodes persisted. And I thought, I'm gonna to be a lot deader after t h i s because i t [the angina] won't go away. Comparisons were useful in gauging that their i l l n e s s was worsening. Each chest pain became a personal benchmark in the progressively worsening i l l n e s s . C l i e n t s also understood they were becoming more i l l because their a c t i v i t i e s became increasingly l i m i t e d . In this way, » 75 c l i e n t s c l e a r l y determined that their health was not improving. And then I noticed i t [angina] was getting worse, worse. I was getting i t before I went to bed at night. I was getting i t as soon as I got out of bed in the morning. And, ah, or, I'm coming to get my breakfast, come and s i t down here and read the paper, and then . . . uh, shake just l i k e that. I could hardly read the paper. Well, ah, i t was getting a l i t t l e worse, a l l right, a l l the time. Like getting, you know, ah, as time was going by, i t would come quicker. Ah, ah, for instance, I could, l i k e in May, I, I packed a l l my stu f f , you know, out to the truck and, yea, I was gettin' them. And, but not bad, you know. I could keep on going. But, ah, month and a half l a t e r , there was no way. You know, I would have to stop. Stop i t . Cay, Vetter, P h i l i p and Dugard (1973) have found in their follow-up study of 203 male patients admitted to a Coronary Care Unit, that c l i e n t s do go about interpreting their symptoms in order to assess their status. Perception of the severity of their symptoms was found to affe c t the kinds of a c t i v i t i e s they undertook. Thus, c l i e n t s ' a c t i v i t y levels were found to relate to how severe they perceived their i l l n e s s . As c l i e n t s r ealized their i l l n e s s was chronic and progressive, they also expressed feelings about l i v i n g with the disease. Fear was one emotional response. 76 And, I had thi s awful fe e l i n g a l l the time. And I didn't want; I wasn't prepared to die and I thought I was g o i n g t o . And that was very s t r e s s f u l . Other participants chose not to worry. So I says, made up my mind and then, I wasn't going to worry about i t . Although a l l the c l i e n t s realized their i l l n e s s was worsening, they f e l t very d i f f e r e n t l y about i t . To deal with their feelings and make sense of the increased l i m i t a t i o n s on their l i f e , c l i e n t s r e l i e d on c h a r a c t e r i s t i c coping strategies. The theme of the uniqueness of these ways to manage i l l n e s s again appeared. Coping with the i l l n e s s worsening. Clients coped by minimizing their worry and maintaining their normal a c t i v i t i e s . Professionals, however, have tended to characterize that l i v i n g with heart disease e n t a i l s l i v i n g with impending death (Granger, 1974). In this study, only two c l i e n t s expressed that they feared death. Thus, pre-occupation with one's mortality would not appear to colour the entire experience as professionals have expected. Some c l i e n t s were able to make sense of their progressive i l l n e s s and cope with the p o s s i b i l i t y of their death by ac t i v e l y minimizing their worry. Once the c l i e n t s r e a l i z e d that their i l l n e s s was worsening, 77 they changed the way they sought medical care. Instead of managing on their own, they tended to rely on their physicians to interpret their symptoms and care for them. Their trust in the professional sector regarding diagnosis and care i s ref l e c t e d in the following account. I just thought that i f something should happen, I ' l l just . . . M [wife] said, "don't worry. We'll get the ambulance and y o u ' l l be i n ; we'd go over to X Hospital and they could take i t from there." Even though one participant perceived that his condition was beyond help, his trust in the judgement of the medical profession remained in t a c t . I didn't think there was anything I could do about i t [his i l l n e s s worsening]. . . . No. Just go and see the doctor occasionally. The value in seeing his doctor outweighed his belief that nothing could be done about his i l l n e s s . Through their trust, c l i e n t s were able to cope with their i l l n e s s worsening. The theme of trust therefore was valuable as a coping strategy. During the f i r s t phase of their i l l n e s s , c l i e n t s were confronted with making sense of bodily cues, medical management and their own feelings. By the time CABG was being considered, they had developed coping strategies to deal with their i l l n e s s . The plan to undergo CABG marked a change both in how c l i e n t s perceived their i l l n e s s and managed i t . 78 The Plan to Undergo CABG During the second phase of their i l l n e s s experience, c l i e n t s became more aware of the exact nature of their i l l n e s s and that CABG was an option in their care. They were primarily involved in making choices about undergoing CABG and then preparing for the operation. The trust in the professional sector was more strongly voiced here than in the previous phase. Hope also emerged as an important coping strategy for the c 1ients. The benchmarks which marked t h i s phase were undergoing coronary angiography, deciding to have CABG, waiting for the operation and having the surgery. Although professionals often consider admission to the hospital an important benchmark, c l i e n t s did not remark on this as a s i g n i f i c a n t aspect of their experience. Thus, t h i s phase contains perceptions of both the hospital and home experience. When the i l l n e s s had worsened to the point where medical management was not c o n t r o l l i n g the symptoms, surgical intervention became a p o s s i b i l i t y . Before c l i e n t s could proceed to undergo CABG, however, further d e f i n i t i v e testing was required. This took the form of coronary angiography. Undergoing Coronary Angiography In the professional sector, angiography has been considered 79 a prerequisite for undergoing CABG even though other sophisticated tests are available to gauge the extent of coronary disease and assess the need for surgery (Wade, 1978). This predominant belief is re f l e c t e d in c l i e n t s ' accounts as a l l underwent e l e c t i v e coronary angiography. Cli e n t s understood the angiogram in concrete ways. They did not rely on professional explanations about the procedure but made sense of i t in terms of what the experience was l i k e for them. Making sense of the procedure. Although professionals have considered the angiogram to be an invasive procedure and not without ri s k , only one c l i e n t expressed concern about i t . [When] she [Dr. X] suggested the angiogram I was a l i t t l e b i t worried. I was more worried about the angiogram than I was about the heart operation. . . . The idea of this catheter going up the vein just didn't appeal to me, eh [laugh]. . . . I didn't think anything would happen. I just didn't l i k e the idea of i t . It upset me. Yea. No, no, I wasn't scared of i t . I just didn't l i k e i t . . . Then after i t was over I sort of wondered why I was scared. Other c l i e n t s were not concerned but explained how they made sense of their feelings and perceptions during the procedure i t s e l f . I didn't mind i t . I didn't have any problem with i t . 'Cause I was so sleepy. They'd given me a Seconal. And then he gave me ah, ah, some, whatever drug--dye they use and I was a l l e r g i c to that. And he gave me a shot of Gravol and I had no problems. And, ah, I couldn't feel anything--no pain, nothing when he was doing t h i s t e s t . . . . I was sleepy but, you know, but yet I could hear everything the doctor said to me. It's funny, isn't i t ? I was sleepy, but yet I heard him, l i k e , ah, as clear as a b e l l . Everything he told me to do, I did i t . And yet I didn't: I just wanted to sleep . . . I didn't: I saw the screen but I didn't even wanna look at i t . Normally, I would have wanted to look at i t . It [the catheter] was up there before I had even any idea. And then she [Dr. X] was pumping. I could f e e l this pumping motion. What she was doing was pumping the dye, and I thought she was pumping the tubes. But I was awfully glad to find out i t was the dye [laugh]. She told me to look over. And I could see my heart and I could see the two l i t t l e pins going. I decided I didn't want to see anymore. I saw the thing [catheter], you know. . . . I didn't know what I was lookin' at, but I saw the stuff 81 s q u i r t i n ' out, you know. And, and, ah, just looked l i k e a big long snake, you know--goes in and out . . . Then they'd be shuttin' the machine off and doin' something, you know. And there was about six, seven nurses around. From the patient's viewpoint of l i v i n g through the experience, the angiogram was not perceived as being p a r t i c u l a r l y threatening nor remarkable. Cl i e n t s understood the procedure through what they f e l t and saw, re l a t i n g their perceptions to previous images ("pins", "snakes"). The c l i e n t s varied in the amount they discussed the angiogram. However, a l l commented on the significance of the results of the angiogram as marking the point at which surgery was considered. They interpreted i t as being important in determining the future course of their i l l n e s s and progress. In comparison to the f i r s t phase of the i l l n e s s , however, th i s theme of progress was perceived p o s i t i v e l y . Clients understood that their condition could improve. The angiogram also was meaningful to the c l i e n t s because the re s u l t s of the procedure enabled them to more c l e a r l y understand the perceived pathology in their heart. As they explained to me, that of the, ah the three a r t e r i e s into the heart, two were completely blocked and one was 90%, the other was 90% blocked. And one obviously from the f i r s t heart attack had developed, ah, good, was i t c a p i l l a r y action? [ c o l l a t e r a l c i r c u l a t i o n ] . And, urn, was seen functioning not too 82 bad. And they told me they would be doing fiv e bypasses. One c l i e n t f e l t that the results of the angiogram were e a s i l y understood and helped to explain why she was i l l . And he [Dr. X] explained i t , l i k e I said, in terms--very, very simple terms that, ah, I found very easy to understand what was wrong. The same c l i e n t found that the angiogram was s i g n i f i c a n t because knowing what was wrong helped her cope. And I've been, I was a d i f f e r e n t person after I had the angiogram and found out what was wrong. . . . I wasn't worried anymore--wasn't anxious. I was just absolutely fine. I was d i f f e r e n t . Yea. I relaxed. I was happy. I knew I had a chance. The benchmark, thus, was important in helping the c l i e n t s understand their i l l n e s s . Because the angiogram i d e n t i f i e d the exact cause of their i l l n e s s , c l i e n t s perceived that something could be done to remove that cause. Instead of perceiving themselves as getting worse, they realized that they could get better. Undergoing the angiogram changed the way c l i e n t s perceived their i l l n e s s . Changes in c l i e n t s ' perceptions of their i l l n e s s . Once c l i e n t s knew the exact cause of their i l l n e s s , their previous perceptions of their symptoms and i l l n e s s changed. One 83 c l i e n t changed the way he perceived his i l l n e s s after discovering that he required urgent CABG. I figured, well, geez, i t [the angina] must be [serious] you know. Because I've known, a friend of mine just had his operation in May. And he had waited nine months. . . . [Needing the surgery right away] told me that I must be, ah, you know, in bad shape. But I'm feeling f i n e . Simply undergoing the angiography raised the hopes of one participant that CABG was being planned. I f e l t that they were gonna operate on me. Well, a lady came i n , took blood. And I said, "What's thi s for?" She says, "For your surgery." You know, I didn't even have the results of the angiogram. And that spooked me out. You know, I thought, "What the h e l l was going on here?" And I said to her, "What surgery?" And then she got quiet and l e f t quickly, [laugh]. So then Dr. X came and I said, "Well, you know, I guess we'll have to have the surgery. But I want a couple of months to get ready" [laugh]. Which, I guess, well, i t made her laugh because I thought they were gonna whoop me in the next day, you know . . . Then I thought i t meant the, that the situation was real bad. I had no idea what she'd found. Clients understood the results of the angiogram in terms of the progression of their i l l n e s s and the a v a i l a b i l i t y of a "cure". In her personal account of open heart surgery, Y u i l l e 84 (1977) also found the angiogram raised her hopes that the results would be favourable. Cl i e n t s appeared to focus on the implications the test would have for their i l l n e s s rather than on the risk of the procedure. The p o s s i b i l i t y of undergoing CABG overshadowed other aspects of the experience. Deciding to Undergo CABG After the angiogram results were available, the c l i e n t s and their c a r d i o l o g i s t s discussed the p o s s i b i l i t y of surgery. In a l l cases this occurred while the c l i e n t s were s t i l l h o s pitalized for the angiography. Further discussions with the surgeon were done in hospital or during an o f f i c e v i s i t . Contrary to professional b e l i e f , the choice to undergo CABG was not a d i f f i c u l t one for participants. The theme of choices was very strongly voiced during this phase of the i l l n e s s . C l i e n t s described their decision to undergo CABG in commonsense ways. One c l i e n t r e l i e d on s p i r i t u a l guidance in his decision-making . Even this time, you know, some, the, the doctor advised me i f I go to the operation. At f i r s t , you know, I thought, you know, I just offer my praying. I don't know. If God promised to go, [sic ] to go to the hosp i t a l , I w i l l find out. At that time, I not make up my mind to accept and to go to the ho s p i t a l . No . . . And then I think t h i s , you know, I thought maybe th i s i s God w i l l . So that I accept. 85 The theme of trust also emerged as c l i e n t s r e l i e d on f a i t h in their physicians to decide whether or not to undergo CABG. A l l the c l i e n t s expressed their belief that undergoing CABG would be b e n e f i c i a l to them. They trusted the medical judgement of their physicians. I got, ah, I, ah, trust them, you see. I t r u s t . I trust my own family doctor. And i f he send[s] me to a s p e c i a l i s t , he's gonna be a good one, I know that. I was thankful for that--that the patient had the choice to make, ah, i t , i t ' s up to them, isn't i t ? If they want to make a mistake, okay, that's, that's the way i t should be. But then, I'm not, I wasn't knowledgeable enough to, you know. I f e e l , i t ' s up, i t ' s up to a patient to make a choice, but then I feel the doctor knows much more because he's trained. And I'd be a fool i f I didn't, ah, do what he suggested. And because I trusted him, ah, and he seemed to be a very sincere man, with a great sense of humor, which I c e r t a i n l y appreciate. And, also because he gave me the choice of whether I should or shouldn't even though I didn't know what was best. I knew, in a sense, that was what I was going to do, anyway. Trust has been an accepted part of the patient-professional relationship. Thomas (1978) has suggested that trust stems from an expectation that situations w i l l be good. When c l i e n t s trust, they become w i l l i n g to accept new 86 experiences and are comfortable with an awareness of themselves, goals and motivations. From c l i e n t s ' accounts, i t i s evident that f a i t h in the professional sector (primarily, their physicians) was very strong. As such, trust seemed to be an important factor in c l i e n t s consenting to undergo CABG. In describing how they chose to undergo CABG, the c l i e n t s i d e n t i f i e d other factors which influenced their decision. A s i g n i f i c a n t factor were the "odds" that the physicians quoted to represent surgical r i s k . He [the doctor] interviewed me and examined me there. And told me of the r i s k . And he said 1% r i s k . And, ah, i t sounded real fine then . . . He said, "You may die of t h i s , though. I want you to know that." He said, "Some people do. Things happen." He says, "But normally for a man your age and your, with your other, your v i t a l s and so forth, 1% risk i s , we're looking at." They t o l d me, ah, that, ah, i t was only one out of a thousand that had problems. Well, that's, you know, pretty good odds. [The odds about my risk of death] meant that I better have surgery as soon as possible. That was my message. And that was the r e a l i t y of the sit u a t i o n . . . A 3% risk after a l l . You take a f a i r risk when you go outside these days. And, ah, 3% was very small compared to 75 and 90. So there was no risk at a l l , was there? 87 It i s apparent that the qua n t i f i c a t i o n of risk was meaningful to the c l i e n t s . The c l i e n t s made sense of their decision by interpreting the professional explanatory models regarding r i s k . The odds helped them weigh the pro's and con's of having the surgery. When surgical risk was compared to chance of death from myocardial i n f a r c t i o n , the choice became clearer to the c l i e n t s . Although risk was an important factor in choosing to undergo CABG, the c l i e n t ' s b e l i e f that the surgery was the only alternative was also s i g n i f i c a n t . I said, " I ' l l have the surgery." Well, ah, I tol d , ah, Dr. X, "well," I said, "there's no alternative but the surgery, is there?" And she said, "not r e a l l y . " And I said, "Well, I w i l l have the surgery." . . . I just knew I had no alternative but to have the surgery. Given any alte r n a t i v e , I'd [ s i c ] probably would have taken i t . I didn't want to have the surgery. You know, and, I, I kinda have, you know, I knew there was a good p o s s i b i l i t y that I might not wake up. And I f e l t that my chances weren't as good. Because I'd been quite sick . . . I was resigned to i t , eh. Well, I've been having a lot of pain. Before. I'd f e l t I had the choice not to take the operation, yes. But I think that the alternative of not having the operation would have been dying. 88 I made up my mind. That when I, when ah, I figured i f I'm gonna need the surgery, I was gonna go right in there and have i t done. . . . I never doubted i t . I, ah, I made up my mind. I said, "Well, t h i s i s i t . If that's what i t is and that's what I need, then that's what I'm gonna do." . . . I didn't, ah, hesitate. The c l i e n t s perceived that undergoing CABG was the only way to become healthy. For one c l i e n t , the decision to undergo CABG was made solely by his physicians. Nobody asked me whether I wanted an operation or, ah, ah, Dr. X at Y Hospital, he just said, "You're goin' there and you're goin' be operated on Monday morning." . . . Like t h i s i s on the Thursday morning. He says, "You're goin' to the X Hospital by ambulance and you ' l l stay there ' t i l we get a a bed i n , ah, in Y Hospital." He says, "We figure on Saturday morning." And he said, "On Monday morning, you're gonna be operated on." Just l i k e that! Nobody said, "Well, do you wanna? or, ah, "Look at," you know. . . . I, ah, thought, well, i f I gotta have an operation, I gotta have an operation. There's no point in me, ah, going along the way I was. From t h i s account, i t is apparent that the c l i e n t accepted the decision and appeared to trust the medical plan. He made sense of the necessity of CABG by perceiving that i t would improve his 89 condition. He, too, perceived that CABG was the only a l t e r n a t i v e . Deciding to undergo CABG also related to the expectations the c l i e n t s had about the benefits of surgery. Clients f e l t the operation would help them in various ways--some related benefits to a c t i v i t i e s of da i l y l i v i n g ; some to l i f e - s a v i n g aspects of the surgery and others to symptom r e l i e f . Other friends, ah, good friends, have had thi s bypasses [sic ]. And, ah, so I knew, you know that . . . they were fi n e . They told me they were fine. They could do anything, just watch what they were eating and, and, ah, gettin' rest and exercise and they were fine. . . . I knew that i f I had this operation, that everything would be fine. A l l I knew was that the operation was gonna help. I mean i t was gonna save me from having a heart attack and be, ah, just s i t t i n g in an easy chair, you know. And that [CABG] was going to improve my chances of, ah, probably extending my l i f e . I f e l t , I, i t would help. I, at f i r s t , thought i t would take i t [angina] away a hundred percent. I asssume now that t h i s i s gonna mean that my, ah, heart's gonna function regularly. It's gonna have a 90 good supply of blood and i t ' s not going to stop me having another heart attack, though. That t h i s could s t i l l happen. You know, I could have another c l o t , or I could have the same problem again. . . . It should be good for at least f i v e years. And I expect to have a pretty pain-free time. The benefits of undergoing CABG were again seen in terms of concrete effects and behaviors. Clients understood that the operation would return them to a well state. Thus, CABG was perceived as a po t e n t i a l l y v i t a l benchmark in c l i e n t s ' getting better. Once the c l i e n t s had decided to go ahead with the surgery, they were pleased. I was very happy to know that, that something could be done. . . . I was very pleased that I was going to have the opportunity [ to have CABG]. They interpreted CABG as a very positive step in helping them manage their i l l n e s s . In addition to deciding whether or not to undergo CABG, some c l i e n t s were also asked to select a surgeon. And, ah, I, I, elected to go with Dr. X. . . . Dr. A told me about him. And, ah, he said, "The main," he said, "They are both excellent." He said, "I'd trust my l i f e to either one of them." He said, "The main difference is that Dr. Y is so busy with, ah, he's been there longer--he's got more patients, more things to do and he's a f f i l i a t e d with the university and 91 things l i k e t h i s . Dr. X w i l l probably find more time for you. Be able to talk to you after i t ' s a l l over with. I said, "That's the guy I want, right there." I s t i l l had the f a i t h in him [the surgeon] because I heard that he was a great physician, surgeon. And, ah, a good one. S a t i s f a c t i o n with their surgeon was a common feeling expressed by a l l the participants. They r e l i e d on information from their personal physicians and friends in order to confirm their trust in the surgeon's a b i l i t i e s . The lay person's grapevine was found to be an important source of information for the c l i e n t s . The perceived personal q u a l i t i e s of the surgeon helped to engender f a i t h . C l i e n t s ' trust in their surgeons was apparent throughout this phase. This theme of trust was very strong. Even though c l i e n t s spent l i t t l e time with their physicians, they s t i l l accepted and respected these doctors and their advice. He [the surgeon] didn't come in to see me that day, but he come in on Tuesday. Just pulled my underwear down and took a look at my legs. Here, he was looking for those veins. Took a look at that and then, ah, pulled my s h i r t open and looked at my chest. He said, "You'll have an i n c i s i o n here, have two here, one down, one here." He walked out of the room and that was i t . . . . Very small conversation. . . . 1 think the less I knew about i t [CABG], the better. 92 You don't know that anybody's going to care about you in the operating room, eh. It's not l i k e you're family doctor's there or even Dr. X [the c a r d i o l o g i s t ] would be there. And I met the doctor [surgeon] once, that was after the, the angiogram. And then I met him again, ah, the day before the operation in the hospi t a l . . . . But then a f t e r , I didn't feel that way, when i t came time for the operation, I f e l t , I f e l t l i k e I trusted them. . . . I had complete f a i t h . I knew they were going to look after me. . . . But I wasn't worried for a long time. And, remember, I'm going out of my community to the hospit a l , too. And most people are there from long way from home, too. [You have a feeling] i t ' s just a process [to the hospital staff ]. Trust in the professional sector helped the c l i e n t s decide that CABG would ameliorate their i l l n e s s . Making sense of CABG and choosing to have surgery, thus, was a complex process. Clients primarily r e l i e d on their doctors to advise them but they explained their decision in ways ch a r a c t e r i s t i c of the popular sector. Their decision was, therefore, based on both lay and professional understandings of what the operation entailed and represented. 93 Waiting for the Operation Once the decision and arrangements had been made to undergo CABG, the c l i e n t s went into a waiting period. The time spent waiting varied for each pa r t i c i p a n t . Concerns. During t h i s time, many c l i e n t s expressed concerns that surfaced about the i l l n e s s and surgery. These concerns were part of the process of waiting which encompassed time spent at home and in the hosp i t a l . Course, you're always thinking about heart attacks, you know. I mean, I don't mind getting a heart attack, but i t ' s only--I don't want to get a stroke. . . . That's another thing that I was worrying, hoping that I wouldn't get a stroke. . . . Before I had the surgery. Yea. I , 'cause we had a neighbour that had a stroke. And he was t e r r i b l e . And I figured, gosh, I mean, I'd rather, 'cause I was, well--I've seen so many people that have had heart attacks and they just survive i t . They just go in there for the operation and then they're okay. And, ah, but I was lucky. I guess I just was lucky to get in and get done before I had my heart attack. Some c l i e n t s were concerned about experiencing the 94 operation and convalescence. I didn't l i k e the idea of having to go through i t a l l because, ah, you know, you, you don't l i k e the thoughts, you know. It's the thoughts more, you know. But I wasn't a f r a i d , or, ah, worried. They told me, ah, that, ah, i t was only one out of a thousand that had problems. Well, that's, you know, pretty good odds. . . . And, ah, that didn't r e a l l y bother me too much. Fact, only thing I was thinking about, well, actually what I did think about was, a f t e r e f f e c t s . You know, l i k e after the operation. You know, a l l these aches and pains, because I have friend[s] who've had i t and they'd say, "Well, oh gee, we've got a l i t t l e b i t of discomfort, you know." During the wait in hospital, c l i e n t s ' concerns were focused more on the actual surgery and convalescence than long term goals such as returning to work. Anxiety regarding the unknown was apparent. They [the nurses] gave me a sleeping p i l l , but i t wore off in two hours. And I woke up, well, after midnight and I was wide awake. . . . And, I said, "ah, gosh, I'm wide awake." And, ah, things l i k e going to the bathroom [following surgery], "How w i l l I go to the bathroom, you know?" . . . and, ah, "What happens i f I'm on the operating room table and, you know 95 [laugh]." And, ah, I'm wide awake. So I got up and I went up to the nurses' station. I says, "I'm wide awake." I said, "I'm getting a a l i t t l e anxious." Clients also perceived that concrete aspects of the convalescence aroused concern. I was dreading that s i t t i n g on a damn [bed] pan [laugh]. Oh, I dreaded that. One c l i e n t believed that contact with a post-op patient could have caused worry. There was one fellow in X Hospital that, ah, was, ah, oh I think he was going back over the years. He was a man about my age; he'd had his operation. . . . He was not a violent, or anything, just a l i t t l e funny. Well that kinda, you know. I figured that that guy shoulda been--the doctor shoulda had him in a, maybe in a private room somewhere where he wasn't mingling with the rest of the [patients]. But he didn't r e a l l y bother me. It didn't r e a l l y scare me into thinking that ah, but, ah, l i k e one of the other patients there . . . Well, ah, he used to look at t h i s fellow, you know and t e l l me about i t . I kinda thought, well, maybe, you know, he could be a l i t t l e b i t worried. In t h i s account, the c l i e n t anticipated what the convalescence would be l i k e by observing his fellow patients. When the outcome did not appear to mark progress and health, the c l i e n t perceived this could be a concern. Professionals have considered anxiety and fear to be 96 natural responses of the c l i e n t and family toward the approaching surgery (Brener, 1972; Brogan, 1972). Winslow and MacVaugh (1976) have written that c l i e n t s fear the procedure i t s e l f , the dependency, loss of control, pain and death as well as being concerned about their families. From the c l i e n t s ' accounts, i t would appear that they also feared concrete aspects of the experience. In addition to ra i s i n g concerns about the impending surgery and sorting out their thoughts and feelings, c l i e n t s were also engaged in trying to understand why they had to wait. The length of the waiting period proved to be a concern to a l l the c l i e n t s , regardless of the actual time spent waiting. I waited too long, r e a l l y . I think that was a bad thing, eh M [wife]? Urn, I went in for my angiogram in March, which was a three month wait for that. And I expected a three month wait for the surgery and i t ended up a six month wait. And i t kept getting--we were waiting for a phone c a l l a l l the time and i t was, ah, nerve-wracking. . . . I'm a l l ready to go and then find that we're not going i n . I phoned--"Oh, no. You won't be going for another two to three months." That's a real let-down. . . . A l l I wanted was to have a month or so to sort of psych myself up for i t , but I would have preferred not to have had six months, you know. . . . I think that's bad, but what can be done about i t ? Even when the wait was comparatively short, c l i e n t s 97 d i s l i k e d the idea of waiting. They seemed to want to "get i t over with." They told me Monday and then, well, the surgery was cancelled. Of course, I was wanderin' around t h i s h o s p i t a l . "Why can't I be laying at home?" You know, I coulda done the same, you know, just stayed right at home here and sat in t h i s easy chair. . . . Actually, i t wasn't a long wait. Other people in there for days and months, you know--weeks. If the wait involved numerous cancellations and delays, the concern was voiced even stronger. F i r s t time, I say nothing. Second time, say nothing. Third time, also, okay. And at l a s t , fourth time, they also asked me to change. I t o l d them that, "What can I do? If today I'm not a minister, I would have very bad temper with you." . . . So I don't mind the change of time. But cannot change i t again, again, and again. . . . This i s very unfair. I think t h i s , the hospital administration is very poor. I heard. The operation room moved to a new room--very chaotic, nothing coordinated. The cancellation was the only thing. They, they coulda, they could have, they could have said to me, "We have an emergency. And we'll give you another day." But nothing was said u n t i l , ah, the night nurse came on and she says, ah, she said, quite innocently, 98 you know. She said, ah, "Did you, ah, when are you gonna go for your operation?" I said, "Monday." She says, "No." . . . So, I , I f e l t kinda upset. . . Well, the assistant surgeon saw me on Saturday morning and he, he says, ah, " I hear you've been feeling kind of upset." I says, well, I says, "You know," I says, "here I planned on Monday and a l l of a sudden". . . He says, "Well, there was an emergency." I said, "Okay, that's f i n e . If i t ' s an emergency," I said, "Well, nobody said anything to me. But i f i t ' s an emergency, that's f i n e . " I says, I says, " I , I, I ' l l go for that because," I says, "I'm sure i f I was an emergency, I'd appreciate i f someone l e t me have their spot." And he says, "Well, that's very nice." He says, "That's very good." And, ah, he says, "I t e l l you what--why don't you take a day pass?" Waiting for surgery raised many concerns for the c l i e n t s . Coping during the waiting period. Overall, the c l i e n t s appeared to determine progress and improvement by the passage of time. Although their condition may not have improved, they perceived the waiting period as an important aspect in regaining their health. Clients made sense of their wait by managing their i l l n e s s and preparing themselves for the operation. This preparation was a posit i v e way of 99 managing the waiting period as well as antic i p a t i n g their needs in h o s p i t a l . During the waiting period, the preparation for CABG was the primary coping strategy used to handle t h i s passage of time. Again, the theme of the uniqueness of these coping strategies was apparent. Cli e n t s used the waiting time to furthur interpret their i l l n e s s and attach meaning to i t s eff e c t s on their l i v e s . C l i e n t s continued to r e f l e c t on what might have caused the coronary disease. There was times when I was wondering, ah, ah, "why now," you know, l i k e that. "Why wasn't i t ten years ago, or, or longer, or why, why now, you know?" . . . Ah, "what the heck have I been doi.n'? What are, the heck we've been eatin'?" Ah, because I, l i k e I say, I ate as many--I was drinkin' as much coffee and, ah, drinkin' as much milk, cheese and, ah, ah, eatin' as many pork chops as I was, ah, ten years ago than I am now, you know. They sought further understanding by reading. This helped them make sense of their i l l n e s s as well as prepare themselves for the surgery. I had been studying, of course. I got books from the l i b r a r y . . . . Some of them didn't help too much. I suppose I shouldn't have maybe involved myself so t e r r i b l y much, because at the time, you see, some of them were pretty morbid. And, ah, maybe I overdid i t a l i t t l e . I think i t used to worry [my husband] a 100 b i t , too, what I used to read. But I never, I never was scared, in a way to read because I wanted to know. You know, you gotta, you gotta read up. I mean, you can't--I couldn't find myself just walk in the hospital, b l i n d to everything, you know. I had to know why, what was wrong, and what they were gonna do. And, ah, so I had an idea what they were gonna do. Information helped the c l i e n t s understand CABG and prepare for the experience. The following accounts r e f l e c t how they perceived the operation would be performed. At f i r s t I thought that when they, they cut a piece out, the blockage out, and put thi s piece i n . But now I understand they, they go, they put another piece in; they don't cut anything out. They just graft below and above. They'd take a vein from the inside of my l e f t , my l e f t leg. And i t would be quite, because I was gonna need, they t o l d me i t was going to be four, ah, what i s i t , v e s s e l — a four vessel operation. One more than a t r i p l e , he said, so I figure, I c a l l i t a quadruple. And, ah, and i t didn't, i t kept, i t was quite a natural thing that I was going to have; i t was gonna be me and not something foreign that I wouldn't reject my own s e l f . 'Cause so far in 69 years I haven't r e a l l y , rejected myself. 101 And I understand that what they have done was that they have bypassed those plugged areas to allow the blood to flow more f r e e l y . And they didn't do i t the way I thought they would do i t . When he explained to me what they were gonna do, I lik e d that much better. Because i t seemed to make more sense to me going from l i k e a main artery d i r e c t l y in, instead of just bypassing i t l i k e t h i s . I thought they just made a loop. 'Cause they said, "bypass". The influence of professional explanatory models is apparent in participants' accounts. However, two participants did not voice any thoughts regarding the actual grafting procedure and i t s purpose. In addition to finding out more about the actual surgery, one c l i e n t used the waiting period in hospital to determine what the experience would be l i k e . I knew when my wife went, they were gonna come around and s t a r t , ah, because I'd seen i t . A few days before, they were preparing another fellow. . . . They were gonna shave me and, ah, the nurse was gonna come in and take more blood. And another nurse would come in and put these thing in my hand here ready .for the intervenous [intravenous]. And, ah, that I would have to go for a shower and come back and, ah, when I woke up in the morning, ah, I had to go for another shower. And they would be sta r t i n g preparing me, because I was 1 02 awake when the other fellow. I knew what they were doin' with him. In her study of open heart surgery patients, M i l l e r (1978) found that in order to receive what they perceived helpful and accurate information about the experience, c l i e n t s consistently sought out other c l i e n t s who had the surgery. Throughout the i l l n e s s , many of the c l i e n t s did seek out information from friends regarding what the experience would be l i k e . We sorta talked. And, and, ah, we'd phone each other up and, I'd ask him questions. And he'd say, well, "I fe e l fine and t h i s had happened; that happened." Three c l i e n t s prepared themselves for the operation through reaffirming their f a i t h and trust in God. The theme of trust was important as a coping strategy. And the thought of going to a Catholic hospital meant more to me than, ah, probably the heart condition. When I f i r s t went into the hospital there was a chap in there and he was a, a minister. And he said, he says, "As long as you have f a i t h , " he says, "you'll be okay." . . . So I took i t , took i t to heart. Another way that one c l i e n t used the time was to get in shape for the operation. I was going to cut down smoking, do a l o t of walking--which I did. Try and lose some more weight. But, then, when i t went on too long, I lost a l l my psyching up. 103 While the c l i e n t s waited at home, their thoughts focused on being healthy enough to survive u n t i l their admission into hospi t a l . I was just going to wait i t out. And hopefully hope that I would get i n . Rakoczy (1976, 1977) has studied the waiting period for open heart surgery c l i e n t s and found that c l i e n t s worked through their thoughts and feelings about surgery in order to cope. She suggested that c l i e n t s ' a f f e c t i v e needs were more apparent than their cognitive ones. In making sense of their i l l n e s s in r e l a t i o n to the benchmark of CABG, the participants in t h i s study also cognitively and a f f e c t i v e l y responded to their wait as a means of coping. In addition to preparing themselves for surgery, c l i e n t s also were involved in coping with their i l l n e s s on a day-to-day basis. During the waiting period, two d i f f e r e n t kinds of a c t i v i t i e s surfaced--those centered on maintaining the status quo (no deterioration in condition) and others toward preparation for surgery. During the wait, one c l i e n t t r i e d to carry on her usual a c t i v i t i e s . I kept doing l i t t l e things around the house that, I hadn't I think that I hadn't done before. I just f e l t better. A normal l i f e was maintained with the spouses, families and friends supporting the c l i e n t s . The theme of the shared nature of the i l l n e s s was made apparent through many references to c l i e n t s ' spouses. E s p e c i a l l y in the waiting period, spouses 1 04 emotionally supported the c l i e n t s in coping with the wait and preparation for surgery. Because the length of the waiting' period was a concern for a l l the c l i e n t s , they had to cope with t h i s . Clients found d i s t r a c t i o n to be be n e f i c i a l in the waiting period. I worked right to the day before I went in the hos p i t a l . . . . I figured I'd be better off working. . . . Ah, because i f I'd a [sic] been home, I coulda been, ah, thinking about i t a l l the time. And, ah, I'd be thinking about i t and thinking about i t a l l and i t would magnify i t s e l f . This way, I, I was at work and i t was a d i s t r a c t i o n . In the X Hospital, I got bored there. I started playing around with those things there, you know [monitoring cables]. Ah, you know, these things a l l over my chest, here. And I would look up at the screen and I could make that l i n e go way up and down and of course they would take a look at that from the desk there, you know and come running in there. And 1 knew what was going on a l l the time and they would say, "That darn thing there, well; i t ' s a l l right now", you know. Char (1978) has postulated that boredom occurs when a situ a t i o n i s monotonous, tedious, low or devoid of interest. The c l i e n t subjectively perceives him/herself captive and may attempt to control, suppress or express the anger a r i s i n g from 1 05 the s i t u a t i o n . What factors actually triggered the participant's boredom is not known. Clients also coped with the length of the waiting period by making sense of i t . One c l i e n t who had his surgery cancelled c l e a r l y allocated the blame for his delay. When Monday come along and I wasn't gonna be goin' i n, on account of shortage of s t a f f . So that got me. And then when he [the surgeon] come and told me about the [shortage of blood for the surgery], well, I couldn't blame anybody for that. That's as much my fault as i t is anybody's f a u l t . . . . The, the, ah, shortage of s t a f f , I, I, right there I kinda got my dander up on the "galdarn" government. This c l i e n t made sense of his experience by seeking out more information and a l l o c a t i n g r e s p o n s i b i l i t y for the delay. As Rakoczy (1977) i d e n t i f i e d , the one day period immediately prior to the CABG was perceived by the c l i e n t s as passing slowly. One participant expressed displeasure at "going second", but dealt with i t in his own way. I wasn't too happy about being operated in the afternoon, too. . . . I waited, yea. And I figured, well. There were gonna operate on the lady f i r s t , eh, and I figured that she probably needed i t . Well, I f e l t that she was, ah . . . she seemed to be very worried. And I thought i t was better that she went f i r s t . Although the participant wanted to be past the benchmark of 1 06 CABG, he realized that the wait was an integral part of the exper ience. Thus, i t is apparent that c l i e n t s used the waiting period to prepare themselves for the surgery. Professionals have tended to perceive that they have an important role in helping c l i e n t s prepare for surgery. The waiting period has emerged as an important time to help c l i e n t s understand their h o s p i t a l i z a t i o n , reduce their fear and have a posit i v e attitude toward the operation (Winslow & MacVaugh, 1976). To accomplish t h i s , professionals have concentrated their e f f o r t s on developing teaching programs to supply c l i e n t s with the necessary knowledge and a b i l i t y to recover. The content of these programs has been similar--pathophysiology of the heart, purpose of CABG, feelings post-op (American Heart Association, 1981). Although the language i s less technical than in professional journals, the content and organization of the programs r e f l e c t the professional rather than lay perspective. Professionals have assumed that patient education i s valuable even though there is no d e f i n i t i v e research to support th i s b e l i e f . Different factors have been postulated to affe c t c l i e n t s ' learning and retention, for example, timing of teaching and anxiety (Christopherson & P f e i f f e r , 1980; White, Lemon & Albanese, 1980). Brundage and MacKeracher (1980) have also suggested that adults possess unique c h a r a c t e r i s t i c s which af f e c t how they should be taught. They believe teaching can only be e f f e c t i v e when i t c a p i t a l i z e s on adults' past experience and focuses on the immediate present. 1 07 M i l l e r (1978) has examined the effectiveness of teaching programs by assessing how c l i e n t s perceived the value of pre-operative information. She found that patient education programs did not c a p i t a l i z e on what the patients already knew, but instead consisted of content that the nurses f e l t the c l i e n t s needed. Because of t h i s , she concluded that the patients' actual learning needs are largely unknown and unmet. Thus, appropriate and e f f e c t i v e pre-operative patient education would appear to be an issue for professionals. Although a patient education program existed at the hospital where the c l i e n t s were admitted, only three c l i e n t s commented on i t . Instead of mentioning the "knowledge" they acquired, they explained the usefulness of the program in terms of helping them cope with the recovery. This d i f f e r s from the professional's tendency to focus on the c l i e n t ' s cognitive learning. Pre-surgery were great. The, the physiotherapists were there, ah, to show you how to cough and t e l l you what to expect. Tubes down your throat. I went to that f i l m , you know, a general f i l m . You know what to expect when you wake up. So you don't wake up. So you don't panic now when you have th i s water hose stuck down your throat. Fe l t as big as a water hose, anyway. They [the nurses] t e l l you a l l about that [the operation]. Oh, I think i t ' s pretty good. 108 Thus, patient education was perceived valuable in helping the c l i e n t s make sense of what the experience would be l i k e . Their viewpoint d i f f e r e d from the professional's, however, in i t s focus on concrete events rather than facts about pathophysiology. Clients were more interested in understanding what the experience would feel l i k e for them. In addition to coping by ascertaining what the experience would be l i k e , patients also retained their hope. As a theme, hope was more strongly voiced during this phase than the e a r l i e r part of the i l l n e s s . The plan to undergo CABG triggered many hopeful statements about a return to health. I wanna feel good. Because that's the way I am. I just, I wanna get a job done. I don't wanna be sick. I hate being sick. Ah, I'm the world's, l i k e most men, I guess, the world's worst, ah, patient. And, ah, I rather suspect that when a l l these heals and I get my body in better condition, that I won't need any [medication]. That's what I'm hoping for. Just keep 'em around, just in case. The participants were hopeful that the operation would mark improvement in their health. However, one c l i e n t did not believe that the surgery would help a l l his cardiovascular problems. Instead, he tended to be more guarded in his hope. I was pretty sure my blood pressure would stay high because i t was high before I had the heart attack. And I couldn't see anything in the operation that was 109 going to lower my blood pressure. Maybe a l i t t l e , but I'm sure that problem w i l l s t i l l be with me. Hope is an aspect of the c l i e n t ' s experience which has resisted r i g i d s c i e n t i f i c analysis and the development of well-defined explanatory models. In further explaining how hope can be viewed as a continuum, Lange (1978) has attempted to define the concept as a complex mixture of feelings and thoughts which center on the fundamental b e l i e f that human problems can be solved. She conceptualized i t as a coping strategy which draws on past experience to deal with an uncertain present. For Lange (1978), hope has a f f e c t i v e and cognitive aspects--faith and trust as well as the selecting out of information to support hope. From c l i e n t s ' accounts, these parts of the d e f i n i t i o n s may be evident. In addition to being hopeful, the c l i e n t s also had a positive attitude toward the surgery and recovery. That's what a friend of mine told me from X City, too--had the operation. He said the matter of attitude was--your attitude was, was very important. I think that's gotta be true in anything. I figured I had a feeling that I was going to be okay. Yea. I f e l t p o s i t i v e . And I thought, "Nothing's going to happen to me u n t i l I'm gonna go through the surgery." And I'm gonna be f i n e . . . . I don't know; I just became determined and p o s i t i v e . And I f e l t my attitude was good. And I l i k e d myself. It wasn't because some of the things that I thought or went through were good--it was, but I l i k e d myself personally. I didn't always l i k e myself the way I f e l t , but I l i k e d myself. And I thought in order to l i k e other people, you have to l i k e yourself. I've just got to make up my mind I've got to get better and keep that in mind and just keep going along. Positive thinking enabled the c l i e n t s to perceive the benefit of the surgery as a return to health. Another c l i e n t expressed an attitude toward l i f e that helped her cope with the surgery. I think that everything you learn i s a stepping stone, higher and higher; and each, each l i t t l e experience you have, or big one is a stepping stone for the next one ' t i l f i n a l l y you make i t to that great beyond. . . It is part; i t ' s part of l i f e . We grow as long as we're a l i v e , we grow. And i f we, i f we don't, you know, i f I, i f a person does not accept this kind of thing, they die. Their s p i r i t dies anyway. . . . And [I] don't worry about tomorrow. 'Cause you only have today, don't we? Actually we only have--how do we know? For t h i s c l i e n t the entire i l l n e s s experience was perceived as another kind of benchmark in her l i f e . She understood her i l l n e s s and surgery by a t t r i b u t i n g positive c h a r a c t e r i s t i c s to 111 the experience. As well as being optimistic about the CABG, c l i e n t s prepared for their operation by deciding what would be an appropriate "patient role" during their h o s p i t a l i z a t i o n . I think, I also, too, that I wanted that, do well to please the people looking after me. . . . I made up my mind that I was gonna be a good patient. . . . I wasn't going to be a damn nuisance. Also, too, you know, you, you l i k e to look after yourself. Well the thing i s , when I went in the hospital I, I said to myself. I'm not going to l i e around. I'm going to get up and walk. I made up my mind that I was, I was gonna get healthy. . . . I r e a l l y worked at i t . And 1,1,1 knew that I was gonna get up and, ah, l i k e , a l o t of times you see people they, they, they groan and they and they're forever groaning and complaining. And I wasn't going to do that. I never did complain about anything. Thus, while waiting for the operation, c l i e n t s used the time to continue to manage their i l l n e s s and make sense of i t . However, because the surgery was imminent, their main a c t i v i t y centered around preparing themselves ph y s i c a l l y , emotionally and mentally for the operation. They were hopeful that the time spent waiting would help them actually undergo the surgery. 1 1 2 Having the Operation Undergoing the CABG was the last benchmark in the second phase of the c l i e n t ' s i l l n e s s experience. However, because c l i e n t s were sedated during the surgery, the only perceptions of th i s benchmark centered around the t r i p to the operating room and surgical theatre, i t s e l f . Nevertheless, having the CABG marked an important benchmark in the c l i e n t ' s i l l n e s s . Although most of the c l i e n t s had vague memories from this period, three people remarked on their experience. And then when I got into the operating room, i t seemed, boy, I wasn't even in the operating room. It was the anteroom, eh, seemed to.be a b i t of confusion. And everybody was happy and cheerful. And they were pushing me here and there. And I f e l t , ah, quite, ah confident. I was aware, though, that I could die. I, I quite, ah, I'd quite prepared myself for that eventuality. And then the g i r l said, "Oh, you're ready for Mr. P now." And they said, "Here you go i n . " And I remember going in, just to the room and I remember seeing the, urn, l i g h t s , and, ah, I remember seeing some green hangings. And then I was gone. In fact I never seen that operating room door yet. . . . I don't know. I think they operated on me in the h a l l getting there because [laugh]. . . . I don't know nothing. . . . It's the f i r s t time I don't remember 1 1 3 going into an operating room. . . . The [nurse] talked to me going down the h a l l about the--how cold i t was in that new part. The new wing was so cold. Oh, but she says, "It look so much nicer, though don't i t ? " And I said, "Yes, i t does look very nice." And that's about the la s t darn time I think I spoke or knew anything ' t i l somebody was slapping my face. I says, "Can I, do I get anything that, where I don't notice the run to the operating room?" And they said, "Oh, we'll give you something." And, ah, and, ah, I remember the fellow l i f t i n g me up on that stretcher. And, ah, I kind of dozed off and, ah, and, ah, I don't remember anything. I don't remember. Although the c l i e n t s did not remember anything from the operation, they did perceive this a s i g n i f i c a n t benchmark. Because i t changed the way they managed their i l l n e s s and perceived t h e i r health, CABG marked a change in the i l l n e s s experience. After the CABG, c l i e n t s focused on recovering and getting better rather than on being sick. The Recovery From CABG While in Hospital The in-hospital convalescent period covered the time following CABG u n t i l c l i e n t s were discharged home. During t h i s phase of the i l l n e s s , the c l i e n t s were involved in s t a b i l i z i n g their physiological condition and coping with threats from the 1 14 CABG. They continued to be hopeful and trusting of their care-givers. Because the environment was structured and other patients were v i s i b l e , the c l i e n t s were able to more readily i d e n t i f y benchmarks in t h i s phase. The c l i e n t s noted progression in their recovery by the removal of equipment (endotracheal tubes, chest tubes, monitoring cables, pacemaker wires) as well as by changes in their environment (from PAR to ICU and then to the ward). Thus, the benchmarks of t h i s phase were of both a personal and environmental nature. For purposes of c l a r i t y , the benchmarks of this phase w i l l be discussed in terms of environmental changes--PAR/ICU and the ward setting. Personal benchmarks w i l l become evident in c l i e n t s ' accounts. The Experience in the Post Anaesthesia Recovery Room and  Intensive Care Unit Professionals have considered the time immediately following CABG to be a c r i t i c a l period in c l i e n t s ' convalescence due to the i n s t a b i l i t y of the body systems. Many complications can ensue which are 1ife-threatening (Calhoun & Bozorgi, 1974; Rees, 1976-1977; Young, 1981). However, the participants in th i s study did not concern themselves s o l e l y with complications or regaining s t a b i l i t y . Rather, c l i e n t s focused on f e e l i n g -states and how to cope with t h i s aspect of their recovery. 1 1 5 C l i e n t s ' perceptions of the c r i t i c a l care areas. In retrospect, c l i e n t s ' memories of PAR and ICU were blurred. How much the c l i e n t s actually perceived and remembered about events in the c r i t i c a l care areas varied. Some were able to d i f f e r e n t i a t e the two areas while others could not. Nevertheless, a l l the participants attached meaning to their perceptions and made sense of their experience in terms of getting better. When I woke up, I was in the Recovery Room. And, of course, a l l I see i s masks, you know, lookin' down at me [laugh], you know. I remember, I remember thi s woman c a l l i n g my name . . . And, ah, I heard her, you know, c l e a r l y . And she says, "Are you awake?" And I, ah, and I looked and I couldn't ta l k . And I, I opened my eyes and, I was in this room. And I could see somebody else walking back in the background. A nurse, I guess; she's a l l in green. And, ah, I looked and I, and I dunno what to think you know. A l l of a sudden, I kind of got excited and I, I'm trying to talk and she says, "Are you a l l right?", you know. Well, how can I t e l l her I'm a l l right when I got a tube down my throat. And so I, ah, I, I kind of wrote with my finger. I remember saying to her, "Did I--operation?" She says, "Yes, you had the operation." And I said, "What day is t h i s ? " And she says, "Thursday." And I was up there Wednesday morning. . . . so then I, then I knew I had my operation. I knew I was i l l . But I knew I wasn't going to die then. Once I woke up and f e l t the tube in there I knew I wasn't going to die. I knew I was a l i v e . And that was the f i r s t thing I said to myself, "Well, I'm a l i v e . " I don't remember [my husband] coming to see me in Recovery. He said I t r i e d to talk and I was c l i n g i n g to his hand and I don't remember a thing about i t . And the nurse said to [my husband], "You know, she's heavily sedated." And I don't even r e a l l y remember. I remember vaguely going to Intensive Care. I can remember them [nurses] just askin' me a l l the time about, "Are you, are your feet cold? Are your toes cold?", you know. 'Cause they were s t i c k i n ' out a l l the time, you know. Cold. And they'd s l i d e t h i s big thing, look l i k e , you know. I dunno which way they were s l i d i n g , but they'd s l i d e i t and they'd take pictures of my chest. X-rays. I remember that very well. And then I remember when they come and t o l d me, "Well, you're gonna go now and we're gonna take t h i s stuff outta your mouth." And, "It's gonna be a l i t t l e 1 1 7 discomfort at f i r s t . " It w a s - - l i t t l e l i k e gagging, l i t t l e b i t , you know. . . . I was, you know, had that, a l l that stuff around me. That, you know, that makes you a l i t t l e b i t , ah, uncomfortable, you know. And the fact that you can't move on your side, you know. You're la y i n ' on your back . . . and they're c a l l i n ' you "darling" and "sweetheart". . . . Here I got my teeth out and I haven't shaved. How in the h e l l could anybody c a l l me that, you know? Throughout their stay in PAR, i t is apparent that c l i e n t s ' perceptions of their experience varied. Although their memories were blurred, they attached meaning to people and events. Waking up and the f i r s t sensations after the surgery were interpreted with r e l i e f because c l i e n t s understood they had survived the operation. During this phase of their i l l n e s s experience, the theme of determining progress was prominent. Clients interpreted their progress and getting better by concrete events such as being extubated and not feeling pain. This markedly d i f f e r s from how professionals describe progress in the c r i t i c a l post-operative period in terms of assessment data (cardiac output, stable heart rhythms and a r t e r i a l oxygenation) (Calhoun & Bozorgi, 1974). People figured prominently in c l i e n t s ' perceptions of their experience in PAR. The perceptual world of the c l i e n t s consisted largely of health care personnel and procedures. Even though family v i s i t e d during the c l i e n t ' s stay in the c r i t i c a l care areas, this was not remarkable. C l i e n t s made sense of 1 18 their experience by r e l a t i n g to their nurses. Once the c l i e n t s were extubated and moved to ICU, their memories tended to be clearer. I don't remember anything about Recovery. I just remember in Intensive Care. . . . Well, I remember seeing, ah, ah, th i s lady I was t e l l i n g you about through a sort of a mist. . . . I thought i t was somebody s i t t i n g there in a h a l l . That I didn't think i t was a room. . . . And then after I started to become, ah, aware of my surroundings. . . . I r e c a l l , ah, that I was being--I knew I was being moved somewhere. And I figured i t must be Intensive Care. . . . And, urn, and I remember them; they just stopped the bed. They just stopped moving the thing and l e f t me there. And I thought I was in a h a l l . Oh h e l l , I thought, I just worshipped her [the nurse caring for the c l i e n t ] . But I couldn't t e l l you what she even looks l i k e . But I'd wake up and he'd [friend] be s i t t i n g there and i t sort of gave me a f e e l i n g . . . . And I could talk to them for a few minutes. And then they would go. Then I'd come to and there'd be another friend there. And then there would be [my wife]. From the accounts i t i s evident that not a l l c l i e n t s remembered being transferred from PAR to ICU. Although 1 19 professionals perceive the transfer as a positive one (the c l i e n t requiring less c r i t i c a l care), the c l i e n t s did not understand i t in the same way. Instead, they focused more on bodily concerns and signs^of progress rather than environmental changes. From the viewpoints of the c l i e n t s , there was l i t t l e difference between the two areas. Nurses s t i l l figured prominently in their memories of ICU. Although PAR and ICU are considered procedure laden areas, the c l i e n t s did not perceive t h i s to be disturbing. None of them commented on the frequency of the disturbances or procedures done. One c l i e n t , however, did perceive that the therapeutic plan reduced the amount of control he had. I was getting l i k e a l i t t l e kid [laugh] you know. . . . You're at their mercy [the nurses]. You gotta be careful [laugh]. This c l i e n t understood nursing care in terms of how i t affected his independence. Of the many procedures that were c a r r i e d out for the c l i e n t s , the ones that were mentioned were those dealing with removal of equipment. Three participants commented on how they f e l t with the removal of the endotracheal tube, chest tubes and pacemaker wires. I thought i t [extubation] was gonna be a l o t worse. I figured I could feel t h i s thing comin' from my stomach, you know, and I would be really--but I hardly f e l t i t at a l l . Just that once, you know, I started gaggin'. 1 20 Well he took--it wasn't painful at a l l . It was, he just did i t so fast that you could hear the e l a s t i c snap, you know when he pulled i t out l i k e that [chest tube] . . . No, i t didn't bother me one b i t . That was strange when he pulled those [pacing] wires out . . . oh, r e a l l y strange. I, he, I'm glad he didn't t e l l me what he was doing. He just pulled them out. I said, "My God. That . . . ". "Well," he said, "They were in your heart, you know." I said, "Thank God, they're out." . . . It was a strange feeling inside there--like a t i c k l e . A l l the c l i e n t s expressed pleasure when the tubes and equipment were removed. For them, the removal of equipment was perceived b e n e f i c i a l as i t marked progress. One c l i e n t remarked, One thing I w i l l say, though, that, that I think that they did which was r e a l l y good, a l l over is that they gave you goals, eh. They say, "Now when we can take this o f f " , or when they took the tube out of my chest. . . . The s i r l said, "I have good news for you. We're going to take the tube out of your chest." And she took i t out and she said, "Oh, what a mess." And I said, and I, I believe t h i s , too, because I said, "Well, that's good because that a l l has to come out of there." . . . But they kept giving me these goals and, 121 eh, they were very encouraging which I think was very, very important. . . . There's something you can hold on to, eh? Thus, the removal of equipment was a personal benchmark, a concrete event, that c l i e n t s perceived as marking progress. The staff in PAR and ICU frequently care for c l i e n t s who are moribund and do not appear to be aware of their surroundings. Taylor (1971) found that staff in ICU presumed that c l i e n t s were unconscious and incapable of communicating--nurses became "machine oriented". From these participants' accounts, i t i s evident that some c l i e n t s do retain their understanding and awareness. As one participant stated, I think one thing they [care-givers] should be careful of i s that, I think, that you aware of a l o t more that goes on than they think you are. . . . And I think even i f they think the person i s not conscious, they should be careful what they say. 'Cause I think we maybe are understanding more, you know. Derrick's and Y u i l l e ' s personal accounts of CABG has corroborated the participants b e l i e f that hearing and understanding are present even though the c l i e n t may appear unconscious (Derrick, 1979; Y u i l l e , 1977). Even though c l i e n t s may have appeared not to understand, i t is apparent that they made sense of the environment by drawing on past experience. They related their perceptions to previous contact with c r i t i c a l care areas. For example, the monitoring equipment was not threatening. 122 I remember, I just, I think my feeling--so many pipes, tubing, you know. Nose, everywhere and, and, ah, li n e s , you know. You're not even aware that they're [the equipment] there. I was wondering how I got around with a l l those things on me. . . . I f e l t sort of l i k e a computer. I seemed to be hooked up to a l l kinds of things. And there seemed to be both arms were hooked up. If I remember right now, and remember, I'm, I'm not sure. But these things seemed to have a l l kinds of things coming out and they were giving these things shots, needles. . . . And the g i r l said, "Well, I'm going to give you something. I have a needle." And I was amazed that when she didn't give me the needle, she gave the needle to, ah a piece of apparatus. . . . and I would know I was only semi-conscious and I thought t h i s was t e r r i f i c . I came to and I was watching the machine [monitoring equipment]. . . . I could see, urn, cardiogram and I was pleased to see that i t was nice and regular. And I could see, you know, l i k e they measure the chambers of the heart. And I remember seeing that from having the, ah, angiogram. And I was watching that and that looked good. And I saw my pulse rate. But then, I was watching my blood pressure go up and down. It was 123 changing. And I had two thoughts about that: one, maybe that's not good, but secondly, maybe the machine was crazy because i f i t changed that, that quickly, that much, what good information was i t ? But then someone was saying, "Look, he's reading t h i s . He shouldn't be reading i t , but he's reading i t . " The other one said, "Don't be s i l l y , he can't read i t . " But I could read i t and I could understand i t . I was aware of everything. . . . No, i t didn't concern me at a l l . . . . I, ah, just adapted myself, I guess. The acceptance of their surroundings would seem to indicate that the c l i e n t s were not frightened of the equipment. Although professionals have anticipated that c l i e n t s fear the technology or the environment (Gowan, 1979), Jarvis (1970) found in her study of 47 c l i e n t s recovering from open heart surgery that 65% remembered the equipment but only 6.3% voiced their anxiety about i t . The re l a t i o n of this low l e v e l of anxiety to pre-operative preparation and prior experience was not studied. However, i t appears that the c l i e n t s in thi s study were accepting of the technology in the c r i t i c a l care areas. They made sense of i t in terms of their past experience and prior conceptions of what i t would be l i k e . I guess I figured that [monitoring equipment] was part of the scene, you know. So i t didn't surprise me to see them because I know. I had an intravenous, too. And, ah, and, of course [my roommate] did, and, ah, I 1 24 guess most other people around me had, so I don't think. i t r e a l l y registered very loudly. . . . I figured, in Intensive Care that you're apt to see a lot of things that you won't see on other wards. Or else i t wouldn't be Intensive Care, would i t ? In addition to making sense of the equipment and environment, the c l i e n t s also were involved in determining how they f e l t . I was just surprised and I was sort of f l o a t i n g in a i r . And I, I, I didn't know what to think, you know. A l l I could think to myself was, "Gee, I've been cut open." And I said, "Gosh, I've been cut open already." . . . I didn't f e e l any discomfort. I didn't feel anything. I just f e l t l i k e I was fl o a t i n g in a i r and, ah, and I didn't know what to think. I knew there was stuff in my mouth but, ah, when you're groggy l i k e that you, I dunno, I just, I t r i e d to t a l k , you know and I couldn't t a l k . And, ah, I didn't know whether i t was the hoses that were in there or what, you know. . . . Whether i t was myself; whether i t ' s something gone wrong. To understand their feelings, c l i e n t s t r i e d to determine the reasons for their present state. They did not perceive themselves in pain or uncomfortable. Professionals have assumed that c l i e n t s are uncomfortable and in pain immediately following CABG (Thorpe, 1979). In 1 25 Swan's account of her own experience with CABG, her feelings in ICU were p a i n f u l . "I f e l t torn to pieces and loosely mended, l i k e a battered marionette and only more pain distracted me from t o t a l pain" (Swan, 1975, p. 2145). However, the primary feelings expressed by the c l i e n t s were that of being r e l a t i v e l y pain-free and amnesic. How much thi s absence of pain and vague memories i s attributable to the analgesia used (morphine and diazepam) has not been studied. From the viewpoint of c l i e n t s , CABG would appear less traumatic than professionals tend to believe. Generally, i t is apparent that participants' perceptions of PAR and ICU centered around concrete events and feelings. They made sense of their feelings and perceptions by relying on pre-conceived notions of what the experience would be l i k e . Although their memories were blurred, they were able to have concerns about certain aspects of their exprience. Concerns. One participant expressed concern over not being able to d e f i n i t e l y state what was real during t h i s period. He had d i f f i c u l t y making sense of the unusual thoughts and senses he exper ienced. Well, I don't r e a l l y now know what's real and what is n ' t . I could have, woulda said more d e f i n i t e l y i t was real e a r l i e r i f you'd asked me in the hospi t a l , 126 but now i t ' s , i t ' s fading away [laugh]. . . . I saw a nun; i t was standing at the end of my bed. She was mad at me. . . .1 dunno. And I thought that maybe i t was because I hadn't been nice to the nurses or something, you see. . . . That is another strange thing, too, that, ah, thi s thing was dangling down my leg. It h i t my leg. And I saw something with sign "Scott I" or "Scott." And I blamed that name for a l l the pain I was having down here [from the urinary catheter]. . . . I picked up on that, would stick in my mind, you know. And I'm, I'm going to hate that name as long as I l i v e . Unusual sensory and perceptual events have been known to occur after open heart surgery. When cardiac surgery was f i r s t attempted, considerable research was done into this phenomenon ( E l l i s , 1972; Elsberry, 1972; Heller, Frank, Malm, Bowman, Harris, Charlton & Kornfeld, 1970; Kimball, 1972; Layne & Yudofsky, 1971; Trace, 1974). Although the c l i e n t s studied did not undergo CABG, their experience was similar to the participants in thi s study (being on cardiopulmonary bypass, recovering in c r i t i c a l care areas, e t c . ) . Thus, the fact that these c l i e n t s perceived themselves as having changes in perception similar to those documented in professional l i t e r a t u r e would indicate that open heart surgery may potentiate unusual perceptual events. The s p e c i f i c concerns that the participants experienced in the c r i t i c a l care areas were related to somatic as well as other 1 27 feeling states. Events and objects became concerns because the c l i e n t s attached significance to them. Although the concerns varied for each c l i e n t , a l l appeared to worry the c l i e n t s because the concerns interfered with normal a c t i v i t i e s or were bothersome. For example, the endotracheal tube concerned two c l i e n t s . Actually, the, the hardest thing I found about my operation was t h i s thing in my mouth and I couldn't talk [laugh]. That's the thing that bothered me more than anything. That I just couldn't say anything. And, ah, course, I couldn't ta l k . It didn't bother me at f i r s t , you know. But, a l i t t l e l a t e r on, i t started to bother me. I couldn't ta l k . And I was wonderin' then i f something went wrong. Another c l i e n t perceived that the urinary catheter was a concern. But I remember being very upset about the catheter, too, you know. And i t was r e a l l y hurting me. . . . Yea, and i t f e l t l i k e I wanted to go the bathroom a l l the time--that I couldn't go because th i s was i n . Another participant was worried about his episodes of nausea. The other thing that bothered me was I was getting nauseated--a l o t . . . . And I was scared of being sick, eh. I could just imagine the pain. For one participant, the environment was bothersome and a 1 28 major concern. And the l i g h t s they drove me crazy. Lights a l l , everywhere--lights, l i g h t s , l i g h t s . I guess that has to be in an Intensive Care Unit. I don't know why. Would you know why? But I found that hard on my eyes, but I got used to i t . . . . I was wishing I had my sunglasses sometimes . . . I used to ask them, ah, i f they wouldn't mind p u l l i n g the drapes around so that the l i g h t s weren't so v i v i d . But they didn't l i k e to do that, in a sense, because then i t ' s harder to, to, ah, keep track, I suppose of what's somebody doing. Thus, c l i e n t s became concerned over s p e c i f i c events when they hampered progress toward a well state. As in the previous phases, the theme of determining progress was a s i g n i f i c a n t aspect of the i l l n e s s experience. Cli e n t s also expressed concern over some aspects of the care they received. Although a l l were grateful for the care they received in the c r i t i c a l care areas, their perceptions were colored by these concerns. Perceptions of care. Because so much of c l i e n t s ' experiences were shaped by care-givers and procedures, c l i e n t s made sense of their experience through understanding people and events. They understood their surgery and recovery by attaching meaning to 1 29 nurses' behavior and the care they received. When they perceived the care was not helping their recovery, they became concerned. One man was concerned about an incident that occurred in ICU. Well, my heart starts acting up. It's the lack of verapamil. . . . It was a t r i a l . And I told this . . . nurse. She says, "What do you know about a t r i a l arrhythmias?" . . . I said, "I gotta had a verapalin [verapamil] to stop t h i s . " I said, "It's going wild for me." I said, "It's r e a l l y bothering me." And I said, "unless you can prove to me that i t ' s detrimental to the healing in my heart or detrimental or l i f e - t h r e a t e n i n g , I don't see why you should hold back." [The nurse said], " Ah, well, we know i t won't k i l l you and your doctors t o l d you that i t ' s a t r i a l , not l i f e - t h r e a t e n i n g . It's not gonna k i l l you." And the doctor came in and he was very nice. . . . He came in and talked to me, very q u i e t l y . Shook his head and I said, "Will you please check i t out?" I said, " C a l l my c a r d i o l o g i s t , c a l l t h i s guy, c a l l that guy. They'll a l l t e l l you that I need this stuff and i t ' s obviously running out." And my heart was just goin' crazy. And I said, "It's r e a l l y botherin' me a l o t . I dunno i f i t ' l l k i l l me," but I says, "It's botherin' me a l o t . " Well, this nurse she got so upset. Doctor l e f t . She went—the doctor was considering giving t h i s to 1 30 me. . . . She went right out there and said, "You have an M.D. behind your name." They're right outside the curtain. "You have an M.D. behind your name. Now i f you give that, give in to that guy--that i s going to be pretty darn, ah, i t ' s , i t ' s gonna show your lack of authority and this sorta thing." And she just went--carried on and on and on. And then she came back in and she huffed around the room. And she came over to me and I'm a sick man, you know. I just, i t ' s within two hours of [transfer from] Recovery. And she came over to me and said, "There is no way we're gonna make any spec i a l , ah, compensation for you over medicine that you think you need when doctors and medical people who have worked around here for 15 years say you don't need i t . You're not gonna get i t . You keep carrying on about i t and you're upsetting everybody else and you're upsetting me and you're just gonna l i e there and be quiet." Well, we were nose to nose. And, I mean,if I had not been so sick, I'd a r e a l l y t o l d that lady something. I was so sick that I couldn't think of anything. I was . . . f u l l of d i s b e l i e f that she could attack me l i k e that, in the condition that I was i n . . . . Pretty soon, here comes a verapamil. . . . I said, "That's a verapamil!" . . . [The nurse said,] "Here, down, here down." Down the hatch i t went. [I] said, "Gee, that's great." I said, "Did they just order one?" And she said, "Well, that's better than nothing. You're lucky you got that." And I said, "Well, I need at least three, ah, over the course of . . . the day, to keep this thing down. She said, "Well, you got i t ordered and you got i t . Stop your complaining" [whistles]. The doctor didn't think obviously that I was out of my head. He, he looked into my records; said, "This guy's been using verapamil--one tablet's not goin' k i l l him. Let's take care of his needs." But the nurse, her stand on that i s what scares me. That there--I f e l t l i k e , ah, the Macon County Georgia, i f you saw that movie. The guy that goes and gets in j a i l and he hasn't got a friend in the world. He can't c a l l anybody; he's just got these people putting him in j a i l . And brother, what they say i s the law. You have no ri g h t s . You have no appeals. That's the way I f e l t . And I f e l t trapped. . . . There was no way that they knew me. They thought I was just bein' a trouble maker. And so, in p a r t i c u l a r , in concert with t h i s nurse carrying on. And she was doin'--just aggravating the s i t u a t i o n . You got a sick man and as far as I'm concerned a sick nurse on your hands. . . . She came to work the next morning and, and I was, I dreaded i t . When she walked into the room, 1 3 2 "God, I just dread t h i s . " And she said, I said, "Good morning, " trying to [take the] edge off things. I thought I might as well make i t as l i g h t as possible. I knew I was gonna get blasted. But I didn't r e a l i z e how bad. "Good morning, s i r , " just in that tone [cold, clipped, o f f i c i o u s ] . And then she went about her business of tidying up. "Your breakfast w i l l be here. Ah, i t ' s soft and i t ' s th i s and that." It was--you could see i t was . . . hurting her to have to speak to me. And then she came over and says, "By the way, do you know where you are this morning? Do you know your name? Do you know who you are?" I said, "Yea, I know where I am." I said, "This i s X Hospital. My wife graduated from th i s hospital as a nurse. I know where I am!" And I was getting real upset. I said, "I can't believe t h i s i s happening." And I gave her the answers that she asked for. And I told the . . . nurse. I said, "I know you're gonna get r i d of me. I caused you a l o t of problems." And the doctor came up, ah, thi s nice doctor and shook my hand and said, "Glad to know you." I said, I"m sorry i f I caused you any problems." He said, "You didn't--don't worry about i t . " In this lengthy account, the c l i e n t expressed his feelings about (as he c a l l e d i t ) , the "Great Verapamil Incident." In addition to the actual exchange between the nurse and himself, he also seemed to take offense at her assessing his l e v e l of 1 33 orientation (a standard part of the care plan in ICU). He seemed to perceive that the intent of her questioning was to d i s c r e d i t his r a t i o n a l i t y rather than assess his cerebral function. The c l i e n t ' s concerns r e f l e c t the perceived discrepancy between the nurse and himself. Benoliel and Van de Velde (1975) have argued that c r i t i c a l care areas evidence a growing tendency toward depersonalization. They believe the lack of common courtesy in care has resulted in a dehumanization of both c l i e n t and s t a f f . In a broad l i t e r a t u r e review, Howard (1975) attempted to more c l e a r l y define dehumanization. She has argued that people can be dehumanized when they are perceived to be things, machines, guinea pigs, problems, lesser people, isolates or recipients of substandard care. In addition, the health care environment can further dehumanize people when c l i e n t s feel they are interacting with detached professionals and have no power over their l i v e s or care (Howard, 1975). Based on Howard's operational d e f i n i t i o n , i t is evident that the factors which promote dehumanization were present in the c r i t i c a l care setting. From the c l i e n t ' s account, i t appears that patients can and do perceive some aspects of what professionals term "dehumanization." One man expressed his concerns over an incident that occurred while he was in ICU. And then I remember towards t h e — j u s t before I got out of Intensive Care. They said that I could go out; now I'm not too sure whether t h i s happened. But I think 1 34 i t did. And I'm a l i t t l e bothered by i t . The, the nurse t r i e d to put a, what do you c a l l those things in your arms, to hook up something with? [intravenous l i n e ] . . . . Well, she was trying to put i t in and she couldn't get i t in. . . . And she was upset about that. And then I got the idea or the old man across from me told me that he'd been waiting two hours for his p a i n k i l l e r s . And I told her maybe she should leave me alone and get p a i n k i l l e r s for him and get a g i r l who knew how to put this i n . And she got upset. And she said, "Well, I am a nurse." And I said, "Well, I, I know that dear, you know." And she looked to me to be, you know, a c h i l d , eh. But I said, "I'm an administrator and I'm [sic ] been an administrator for many, many years." And I said, "Things can go wrong every once in a while." And I said, "You've been under tremendous pressure." And I said, "Why don't you just l e t me be?" I said, "I'm not hurting. You know, I'm fine. You look after the old man and give him his medicine." He was smiling. In t h i s account, the c l i e n t not only was concerned about his own feelings but also those of the nurse and another patient. He went on to express how he f e l t about the incident. And then after I f e l t very bad. I thought I must have been mean to that g i r l . . . But I wasn't quite aware of what I was doing . . . If I think, i f I was 135 completely rational--no, I wouldn't never had said anything to her. Certainly not, because I f e l t I must have disturbed her and maybe gave, made her fee l less secure in herself, you know. I f e e l r e a l l y badly about i t . . . I, I r e a l l y s t i l l am concerned about i t . . . . I think I, I was upset about, ah, the I V or what the g i r l was trying to put into me because she had to get that in before I could leave the Intensive Care. And, of course, t h i s was delaying me getting out of that damn bed. 'Cause I thought when I get out of there, the [ward] bed would be fantastic [for my sore hips]. As in the previous participant's account, the c l i e n t became concerned when the nurse was perceived to be hindering his progress and recovery. However, i t is apparent that he was also worried about the nurse's feelings of security. One c l i e n t became concerned over an incident because i t prevented her from assessing her progress. My pulse had been, ah, I noticed i t was monitored, of course. That I noticed, that the pulse was--that there was, that there were monitors over, quite high up over the bed. And I noticed that mine was going a hundred f i f t e e n beats a minute, which to me seemed to be awfully fast . . . . And I asked the nurse about why was my pulse going so fa s t . And, ah, she said, "Oh, we don't worry about the pulse unless i t ' s a hundred 1 36 and f i f t y [laugh]. And, ah . . . I thought that was rather odd because I had never had heard that before. That, ah, i t seems to me that's awfully f a s t . That's what you c a l l tachycardia, is i t , isn't i t ? . . . That worried me a bit in spite of the fact she, she didn't reassure me by saying that to me because I kept--I remember I kept, I kept looking at this monitor. And then I would take my pulse and I could hardly keep track of the beats. The discrepancy in explanatory models between the nurse and c l i e n t created d i f f i c u l t i e s for the c l i e n t to assess her progress. When c l i e n t s expressed displeasure over th e i r care, i t was usually related to the manner in which care was given. It started out, ah, rather strangely, I guess. I dunno. But I think i t was probably having had this tube in my throat and then they took that out. And I had the [urinary] catheter i n, too, which was i r r i t a t i n g me, because I'm very sensitive in that area. And, ah, I think I was a l i t t l e b i t , ah, sore and maybe when she, when I had my bath, you know she was maybe just a l i t t l e b i t , ah, was a l i t t l e b i t - - I wouldn't say rougher, but she wasn't that gentle, r e a l l y , you know. A l l these things I suppose didn't help to make me feel any better. And there was one nurse down there, that i t , she'd 1 37 either been getting up on the wrong side of the bed or she was always l i k e that. She looked to me l i k e she coulda k i l l e d me. . . . She woulda l i k e d me much better i f I, had I not made i t , I think. . . . And she come, "Well, what is i t ? " And she'd get somebody and they'd get--take care of i t . For I hadda bother her three or four times and I knew she was busy. But I had a c r i t i c a l need [to be suctioned]. And she responded so s a r c a s t i c a l l y . One c l i e n t was concerned over the constant attention he received. They [the nurses] were asking me so many times that, you know, that's l i k e an old mother hen lookin' after their chicks, you know. . . . And, ah, I can remember, you know, they were t a l k i n ' to me and, ah, always wantin' to know i f I'm comfortable. . . . Like I appreciated everything they did for me in X Hospital. Absolutely. But, i t was just a l i t t l e b i t too much. Clients made sense of the care they received by comparing i t to what they f e l t would be helpful to them. Because they were intent on recovering from their i l l n e s s , care was interpreted in terms of this goal. Thus, when the care did not benefit them, they became concerned. One c l i e n t explained why the care he received was not more b e n e f i c i a l . I know X Hospital i s a huge place with a l o t of people to take care of. And, ah, and just as an outside guess, I think they're way understaffed . . . And so 1 38 the doctors don't have time for that. They're short-handed. Ah, the nurses are short-handed, in my estimation in their Intensive Care Unit. However, not a l l perceptions of care were negative ones. The c l i e n t s , for the most part, were grateful to their nurses and praised their q u a l i t i e s . Ah, l i k e even when, even when I couldn't pick a face out, I knew I was being looked after . . . But i t , I always f e l t ; thought that I was being well cared for. I not complain about nurses. . . . I know, I know they are a l l busy. But I r e a l l y grateful some nurses in ah, i n, in, in, ah, in ah, Intensive Care and Recovery. They were wonderful. I remember one of the ladies . . . she [sic ] well experienced. No, not, no need me to, to talk with her something d e t a i l , that she understand. Wonderful. In Intensive Care, you know, when you can't speak because you got thi s [tube] down your throat, I had a super gal. Stuck right by me. And I remember, one nurse that I li k e d very, very much. But I can't remember her; I don't know her name or anything. . . . I think she j u s t — t h a t she was very sympathetic. Nursing care was perceived p o s i t i v e l y when i t helped the c l i e n t s 1 39 get better. The theme of trust was i m p l i c i t in their gratitude. The support and empathy f e l t by these c l i e n t s was of significance to them. They valued i t because i t helped them recover. In their desire to be healthy, c l i e n t s also determined their role in the recovery process. One c l i e n t understood that being a "good" patient would f a c i l i t a t e care and his recovery. And I was concerned about that I wanted to be a good patient. And I didn't want to create any problems and I couldn't ring the buzzer. And I remember getting--the nurses giving me h e l l about that because I was doing things and they said I should ring, and "Didn't I know where the b e l l was?" And I knew where the b e l l was but I didn't want to bother them. 'Cause I was determined I wasn't going to be a nuisance. This c l i e n t ' s b e l i e f s are probably not unique. Blacher (1970) has written that c l i e n t s recovering from CABG hide their anxiety in order to present a facade they f e e l acceptable to the s t a f f . For the professionals, the "good patient role" has been i d e n t i f i e d as a coping strategy for c l i e n t s . During their stay in the c r i t i c a l care areas, the c l i e n t s made sense of their environment and bodily sensations. They coped with the immediate recovery from the surgery and marked progress by the removal of supportive care. By the time they were ready for transfer to the ward, they had become more independent and f u l l y cognizant of their surroundings. 1 40 The Experience on the Ward The transfer to the ward was a benchmark because i t signa l l e d a change in how much c l i e n t s depended on health care personnel for routine a c t i v i t i e s . Clients marked progress by the physical move but also in terms of a return to their usual act i v i t i e s . Making sense of their recovery and i l l n e s s . Once c l i e n t s had recovered from the acute post-operative part of their surgery, they were confronted with making sense of d i f f e r e n t bodily sensations. Because CABG marked a change in their i l l n e s s , they had to re-interpret their i l l n e s s in l i g h t of the new information and benchmark. Cli e n t s went about doing t h i s in d i f f e r e n t ways. One way c l i e n t s made sense of their feelings was by comparing their expectations of how they would feel and their actual feelings. Overall, they perceived that the recovery was better than they expected. Ah, I remember being uncomfortable and sore but not the pain I expected. I remember being that I was in as l i t t l e pain as I was. I expected to be in a lot more pain. . . .I'm s t i l l sore but not, i t gets better now. 141 I wasn't feeling any discomfort at a l l . I, I [expected] to be f l a t on my back for about a week. Oh yea, actually I thought i t would be worse. I, I, thought; I r e a l l y thought i t would be worse. And, ah, but actually i t hasn't been too bad. The r e a l i t y i s that the fact that I had this operation. That I'm a l i v e . And I, ah, tolerated the discomfort very well, I think. 'Cause I think I, well, I think I'm f a i r l y adaptable . . . Because I didn't feel that I was r e a l l y having a very bad time. . . . but I was expecting--but how could you go through something l i k e that and not expect to feel pain, or, or what I c a l l , ah--just to be different? How could you have your breastbone broken and, ah, not feel something? How could you not feel that, a l i t t l e d i f f e r e n t ? I wasn't expecting; I would have been s i l l y ; I wouldn't have been, ah, normal, I think i f I hadn't expected to just f e e l l i k e , l i k e I had, well, I thought f e l t better in a way than I had before. Because I f e l t , because I was accepting the pain, I was getting better. These impressions were going through my mind. Thus, c l i e n t s perceived that they were in less pain than they anticipated. This was progress toward recovery and health. Pre-operative teaching information for c l i e n t s states that 1 42 "most patients complain of being sore but do not have severe pain" (American Heart Association, 1981, p. 14). However, the unanimous surprise with feeling so well would appear to be an aspect of the experience with CABG not well understood. Cli e n t s were also pleased about their recovery when they were able to be more mobile and independent. Two were espec i a l l y pleased to be up. They associated progress with the amount they could do for themselves. And I kept trying to s i t up. . . . Yea, and they caught me up a couple of times. Said I wasn't supposed to be up. But I said, "Well, I thought I was supposed to get up as soon as I could." And I said, in fact they told me I was supposed to be walking, right away. And that's what, you know, they implied before the operation. Two nurses came and took ahold of me and said, "Come on, you're, going for a walk with us." And I said, "Already?" And they said, "Yea, come on." And they s l i d me down on the floor and took a walk to the door. And back to the bed. They said, "That's a l l you're going to get today." And I said, "No, I want one more." Thus, c l i e n t s understood they were getting better by the return of their mobility. Once on the ward, c l i e n t s were involved in making sense of their bodily cues. Because the surgery had altered their 143 accustomed ways of dealing with their i l l n e s s , they were ac t i v e l y attempting to understand what was happening to them. Changes in expected behavior were perceived to be concerns. Again, i t was concrete behavior which was perceived worrisome. Concerns. Different kinds of incidents were perceived to be concerns for the c l i e n t s . For example, the loss of appetite proved to be a concern to a l l but one par t i c i p a n t . No, I didn't feel l i k e eating. I was glad to know I was getting something in the IV. . . . No, I, i t took a while for . . . my taste to come back. Musculo-skeletal d i f f i c u l t i e s were a concern for two part ic ipants. But I remember being upset about the bed 'cause my hips were t e r r i b l e sore and I could only l i e the one way and they were gettin' very sore. . . . And I was awfully mad at the hospital beds. I thought they were t e r r i b l e . . . . I was complaining about them a l l the time. I thought the hospital should r e a l l y be ashamed of themselves for having beds l i k e that. . . . The other thing is that they didn't give me a was a, a cl o t h to p u l l myself up [in bed]. And, now everybody else had one and I f e l t r e a l l y done out of that. But I didn't seem be able to get together enough to ask 1 44 for one, you know. I couldn't sleep. . . . And, ah, I knew I shoulda been laying, they say you're supposed to lay on your sides. Take turns. Well, I couldn't. My shoulder, t h i s , e s pecially in this side, eh--geez, you know, just ache. Always did ache when I l a i d on i t too long. And, ah, I dunno why. I could lay on thi s side a l i t t l e b i t longer. But most of the time I sleep, sleep on my stomach. Other incidents were perceived to be concerns when they were out of the ordinary. About an hour after I was s i t t i n ' in my chair and I went to get up and when I got up on my feet, I f e l t a l i t t l e b i t dizzy. And then I f e l t a hot s p e l l right in the back of my head. . . . And i t went to both my ears, right away--just burning. And I've never f e l t that again, since. . . . I t ' s , i t ' s the same feeling in the ears and that part of the neck was the same feeling as when I got my angiogram and they gave me that shot of a, of a dye in my heart. It was the same kind of a hot feeling l i k e that. I'd have five days and fi v e nights of i t [hiccoughing] and one damn p i l l took i t away. . . . after they gave me the one p i l l - - I just was laying in bed a l i t t l e while and away i t went. After hippicking for five 1 45 days and five nights. Oh, that was a nuisance! And I f e l t quite nauseated that day. And then I developed diarrhea which was bad and lasted. And doctor, the doctor told me he didn't know. None of the doctors knew what was causing i t . It may have been this medication for, ah, anticoagulant. I just got a l i t t l e b i t concerned a few days later when I noticed that my pulse rate was so high. Although the concerns varied for each participant, c l i e n t s perceived their behavior as worrisome because they deviated from what the c l i e n t s expected of their experience. The concerns interfered with their recovery and were perceived as indicating that progress was at a s t a n d s t i l l . The fact that they had hiccoughs and diarrhea seemed to be a concern because i t was a setback in their recovery. Non-somatic concerns also surfaced while the c l i e n t s were convalescing on the ward. I had a lot of X-rays which kind of scared me a b i t sometimes. You know, because of the radiation and because, ah, I have to be careful of the radiation [due to a previous history of cancer]. Otherwise, I figured i t was something; I, i t was necessary. I had to go through i t . It was part of the deal. And, so, I guess I accepted i t . 1 46 Dr. X stopped i t [medication] to put me on opium which I guess he thought I needed something to, to, I dunno why [to treat diarrhea]. I said, "I hope I won't become addicted to t h i s . " Because I sure l i k e d i t . The only thing that bothered me was when I went in there I had a room with a bath. And when I come back, I had a room without a bath. I l i k e to have a bath. These events became concerns because the c l i e n t s perceived they might interfere with their recovery and long-term health. Clients anticipated their progress and became concerned when anything interfered with their expectations. This was how they made sense of many events in th e i r convalescence. One c l i e n t became concerned when he learned about an incident that occurred in the operating room. And I do know that something happened to me on the operating table, too. . . . Well, ah, Dr. X told me that there was a problem. And I, ah, said to him, well, ah, the, the lady who gave me the anaesthetic came back to see rne And he said, "Well, she should." She made, you know, he implied that she made a mistake. And I think that what i t was, i t was, they couldn't get my heart started or something. And, ah, I was a l i t t l e annoyed when he told me that, at f i r s t because, I ah, thought, that everything had gone so wonderful, you see. But now, I mean, i t doesn't bother me now. I t , whatever i t was didn't do that 1 47 much damage. In this account, the c l i e n t attached concern to the incident because i t s i g n i f i e d a potential setback in his progress and health. Although he attached significance to the incident, he also appeared to minimize his concerns. Because he perceived that the incident didn't seem to affect his progress, i t lost i t s s i g n i f i c a n c e . Brown and' Rawlinson (1975) have found that c l i e n t s naturally minimize their former i l l n e s s once they have experienced open heart surgery. They have postulated t h i s to be evidence of c l i e n t s relinquishing the sick r o l e . Whether or not th i s is the way the c l i e n t coped with his concerns can only be surmised. However, i t is apparent that c l i e n t s do minimize their concerns over time. The kinds of things which concerned c l i e n t s did not necessarily coincide with what professionals would be worried about. Cl i e n t s made sense of events and bodily cues in terms of their r e l a t i o n to what was expected of the experience. When events interfered with progress in concrete ways, they became concerns. For t h i s reason, c l i e n t s often did not have the same concerns as professionals did. For example, one c l i e n t was not at a l l concerned about what professionals would term a "complication" of the recovery process. And that's what caused t h i s infection here, i f you knew about that or not [sternal i n c i s i o n ] . But i t ' s okay now. I had a l i t t l e i nfection and they gave me a n t i b i o t i c s and i t ' s a l l cleared up. And that's f i n e . 1 48 But the doctor said i t was because i t was so close to the f i r s t surgery [I had]. Again, the matter-of-fact attitude i s apparent in thi s account. Even though professionals would be concerned about the c l i e n t ' s complications, the c l i e n t did not seem to echo t h i s concern. Instead, she minimized the importance of complications. She did not attach the same meaning to the infectio n as the professionals did. This may be a natural response when r e f l e c t i n g on past experience. Perceptions of care. In addition to making sense of their bodily cues, c l i e n t s were again involved in understanding the care-giving process. Although their contact with health care personnel was less than when they were in PAR and ICU, they s t i l l constructed opinions about their care. For the most part, c l i e n t s expressed their gratitude for receiving care and f e l t that i t was adequate. I would say I got good treatment. . . . I got absolutely nothing to kick about the hospital and nurses and everything. However, certain aspects of care were perceived less than i d e a l . I w i l l say the physiotherapist gal was t e r r i f i c . . . She was one of my favourites. She's very busy. It's 1 49 easy to see that you're a l l extremely busy. So i t ' s not your f a u l t , necessarily. You s l i g h t a patient. And I think most of them do, inadvertently. And sometimes you feel g u i l t y . Most of the time you feel g u i l t y . I did at least, h i t t i n g the buzzer 'cause I knew i t was a bad time. One participant perceived that the ward routine was problematic. Ah, around ah, ah, changing of the guard [laugh]. I, I mean you better, you could die, you could actually die before somebody got to you. Why? Because "We're having report." 1 Other concerns centered on the communication process and care given. I was having a problem there with my heart one day, with t h i s be, thi s would be before surgery. With f l i p - f l o p s , back to that again. And maybe i t was just a matter of timing on the verapamil again. So, but the nurses could hear with their scopes enough to where they ordered immediately EKG so they get a s t r i p on i t . And, ah, thi s doctor was there and he read that s t r i p . And I had to go fin d out what they thought of i t . He did not come to see me, nor did he pass the word on his findings of that s t r i p . Was there anything unusual, what had happened. Shit, they just walk out on problems. . . . But, that's just that they, doctors and nurses, maybe they're too busy. And 1 50 that's got to do with budgeting and things, maybe that, I can, I can't do anything about i t or you can't do anything about i t . Except, they're gonna have hafta be more c a r e f u l , I think. Don't try to do i t a l l . Go slower but do i t right! The concerns about the care-giving process related to i t s e f f e c t s on the c l i e n t s , themselves. When care interfered with their recovery i t became a concern. During c l i e n t s ' recovery in hospital, professionals have considered patient education and r e h a b i l i t a t i o n an important component of care for c l i e n t s . Usually booklets, group sessions or one-to-one teaching have been used to teach patients (Foxworth, 1978). Content of the post-operative teaching has tended to include such areas as a c t i v i t y , d i e t , weight, stress management, complications and medical care (Barbarowicz, 1976; Burrows & Gassert, 1979). Hart and Frantz (1977) considered the content of patient education to be often based on professionals' speculations of what w i l l be problematic for c l i e n t s . The professional sector's explanatory models would appear to predominate the teaching programs used. The effectiveness of teaching programs in changing c l i e n t behavior has not been conclusively established. D i f f e r i n g methods of administering the program seem to have no effect on patient outcomes (Barbarowicz, Nelson, DeBusk & Haskell, 1980). Two participants expressed their opinion on the effectiveness of teaching programs in general. One man found that public education was not b e n e f i c i a l . 151 Well, you can't help but think about i t [heart disease] because they were talking about i t a l l the time and they were talking about, ah, smoking and, you know. . . . But, naturally, I think even before you had the heart attack, you thought about i t . I think everybody does. And I noticed after I had my heart attack, a l o t of people would ask me about i t . Especially young men and I suddenly re a l i z e d that they were asking because they wanted to know what i t would be l i k e when they had one. . . . You could see that, in them. . . . They were scared and so much p u b l i c i t y about i t . . . . And sometimes I think that p u b l i c i t y ' s counter-productive. . . . You get people conditioned that they're going [to] get something, t h e y ' l l probably get i t . Another c l i e n t found that patient education was p o t e n t i a l l y harmful. Well, my kids, one of them . . . has asked me twice, "Is t h i s hereditary?" And I to l d him, "No." I may have l i e d , but I don't him, I don't want him worried about i t at age 21. How, man . . . ? Maybe I'm wrong but could I get them to change their way of, ah, eating, l e t ' s say? In a study of patients recovering from myocardial i n f a r c t i o n s , M i l l e r (1981) found that c l i e n t s perceived information from the media about heart problems, exercise, d i e t , blood pressure and smoking were h e l p f u l . These findings d i f f e r 1 52 from how the c l i e n t s in t h i s study perceived public education. Based on the response from the c l i e n t s , their patient education program was not mentioned as d i r e c t l y a f f e c t i n g their recovery and progress in h o s p i t a l . However, as w i l l be evident in the la s t phase of the i l l n e s s , some c l i e n t s did perceive certain aspects of their teaching to be useful. Clients did not solely rely on nurses and other health care personnel to speed their recovery, however. They also drew on their own coping strategies to help themselves get better. The theme of the uniqueness of these strategies recurred in t h i s phase. Coping with recovery and setbacks in progress. During h o s p i t a l i z a t i o n , the c l i e n t s used many di f f e r e n t strategies to cope with their recovery and setbacks. The previous ways of managing their i l l n e s s were retained but evidenced in d i f f e r e n t ways. One c l i e n t expressed that s p i r i t u a l i t y helped her cope with the i l l n e s s . And he [doctor] has a, a slogan, oh I wouldn't c a l l i t a slogan. He has, urn, on his w a l l - - i t was something I was trying to remember in the hospital, in the l a s t time I was i n . And i t came to me during the night. You know I stayed awake for about two hours trying to remember the second half of t h i s , ah, quotation, 1 53 that's what I would c a l l i t . And i t said, "We are not, we are not granted freedom from the storm, but we are granted peace amidst the storm." And, oh, that consoled me. Really, r e a l l y consoled me. And I stayed awake, just deliberately trying to remember and f i n a l l y i t came to me. And i t ' s very, very true. The same participant used humor in order to deal with her concerns. I was kind of disgusted with everything about that time [episodes of diarrhea]. But I was laughing. I thought i t was kind of funny. For two c l i e n t s , goal-setting was perceived as helpful in managing their recovery. I says, "I'm gonna be a hundred percent better today than I was yesterday. And tomorrow I ' l l be another hundred percent better." Being optimistic helped these c l i e n t s see progress toward their goal of health. The theme of hope was again evident as valuable in helping c l i e n t s cope. Clients also used commonsense therapies to help them cope with their concrete problems. When I got up and pulled the bed, I got the darndest pain in the back of my head. . . . It was a sickening f e e l i n g . It didn't matter how I moved my head, l i k e t h i s , l i k e that, up and down. It stayed there. . . . So I said to the doctor. He was s t i l l s i t t i n g on the corner of my bed, writing away on my papers there. I 1 54 said, "Gee, I've got an awful pain in the back of my head." . . . And he said, "Ah, what time's your w i f e — is your wife coming to see you?" And I said, "Yea, s h e ' l l be here about four o'clock." He said, "Get her to massage i t . " . . . One hour I rubbed and I rubbed a l l around here and then I got rubbing right down in here. And I could feel i t r e a l l y sore there. That's where I r e a l l y dug into. Then i t went away and l e f t me. When I went out into the ward again I asked for some cough medicine and I got i t a couple of days l a t e r ; they f i n a l l y come across with cough medicine. And, ah, about three shots of that cough medicine and I wasn't coughing anymore. These accounts again point out the interplay between professional and popular aspects of explanatory models. When concerns occurred which hampered their recovery, c l i e n t s coped by dealing with their symptoms in concrete ways. They understood that r e l i e f from their concerns could be obtained in commonsense ways, for example, by taking cough medicine for a cough irregardless of the need to expectorate. The support of family and friends helped.c1ients cope with the recovery as well as setbacks. The theme of the shared nature of the i l l n e s s was strong during t h i s phase of the i l l n e s s experience. I enjoyed her v i s i t s [wife]. And, ah, and, ah, but 155 she'd always come up there [to the ward]. And my wife know which food I l i k e , which one to select. Help me with t h i s , you know--to select something for me. During the period on the ward, the c l i e n t s continued to evaluate their progress. They found this helped to maintain their hope. In this way, the themes of hope and determining progress were linked together as valuable coping strategies. Health care providers were perceived to be important sources of information regarding progress. Yea, but I knew that he and Dr. X were pleased with my, ah, progress. I knew that without even being conscious of i t . You know that M [wife]? Yea. . . . And I, I had the feeling, you know, when I was trying to do these things a l l myself, a l l the time. I don't know why. . . . I think i t ' s important that the staff have a posit i v e attitude toward you, too. I think you understand a lot more what's going on, even when they don't think you do. I r e a l l y do. I thought I was doing pretty well. Because the nurses a l l told me. That, well, they said, "You're doing, you are doing very well." And the next day a f t e r , ah, I came down [to the ward], th i s young, I forget her name. I, I think, the physiotherapist; she came to see me and she said I could walk around the room the 156 second day . . . I just f e l t I was progressing very well. Information from other patients or friends helped to inform c l i e n t s of how they were doing. Comparisons were made. I walked up to the nurses' station and I says, "Hey look," I says. "It's okay i f I walk?" "Sure." So, and ah, and I and there was another fellow inside the room with me and he says, "You're just out of, ah, ICU?" And I says, "Yea." And, "You're walking already?" I says, "Yea." I says, "Yea." And after that he says, "Gosh," he says, "You're doing good." . . . I said, " I , I feel good." I says, "I f e e l , I don't f e e l anything." . . . And then, then I had, then next week I had v i s i t o r s and they a l l said, "Look," you know, "Where?", you know, "How come you're not lying down?" I, I'm walking around and s i t t i n up. . . . That was a surprise And, ah, they said, "Gosh, they couldn't get over i t . " . . . And that helped me, too, you know. One c l i e n t compared her progress to a fellow patient. For th i s c l i e n t , comparing herself to another helped her to see progress in her recovery and to mark time. We were just the two of us in the room. And she had valve surgery. And I, I and she was a very sick woman. She was sicker than me. Ah, she was the type of person that seemed to get down e a s i l y . And she found, she used to grimace t e r r i b l e . . . . Maybe, ah, 157 possible valve is d i f f e r e n t than, than, i t maybe a harder operation? . . . I f e l t maybe i t ' s just possible that the poor woman is having a tougher time than me. Lange (1978) has suggested that c l i e n t s make sense out of their r e a l i t y by scanning the environment for clues. In order to sustain their hope that they are improving, c l i e n t s rely on environmental cues and comparisons made with others. They also turn to other people for agreement with their perception of the sit u a t i o n . For the participants in thi s study, i t i s apparent that they made sense of their recovery in terms of progress toward getting well. They interpreted care and their bodily cues in l i g h t of this goal of health. Once c l i e n t s had recovered from the major effects of the operation, they were discharged from h o s p i t a l . This benchmark signalled a new phase in the i l l n e s s experience. The Recovery at Home The l a s t phase of the i l l n e s s experience began with discharge from hospital and included the interview with the investigator. During their convalescence at home, the c l i e n t s continued to be trusting of their physicians. Recovery from their surgery entailed using d i f f e r e n t coping strategies since angina was no longer the predominant symptom to manage. Again, families and friends were perceived to be supportive in helping the c l i e n t recover from CABG. As in previous phases, the 1 58 c l i e n t s also appeared to retain their hope through making choices and assessing how they were progressing. Although the c l i e n t s were, on the whole, very optimistic, concerns were voiced about the recovery process. The primary benchmark of t h i s phase was c l i e n t s ' discharge from h o s p i t a l . Because progress was assessed in individual terms, other signs of a return to health were very i n d i v i d u a l i s t i c as well. To f a c i l i t a t e presentation of c l i e n t s ' accounts, their perceptions of t h i s phase w i l l be discussed in terms of how they understood this phase. The Discharge Home Release from hospital was a benchmark in c l i e n t s ' i l l n e s s experiences. Clients made sense of their i l l n e s s in l i g h t of this po s i t i v e event. The c l i e n t s not only perceived i t as a sign that they were considered "out of danger" but also as another change in their i l l n e s s . Understanding discharge and the recovery at home. While s t i l l in hospital, c l i e n t s were preparing themselves for discharge and constructing expectations of what i t would be l i k e for them once home. These expectations included ideas about a c t i v i t y l e v e l s and managing the recovery. I, ah, I never thought of any, ah, of having any 159 problems, you know. I figured I'd do things and do slowly and, ah, and, ah, and then build myself up. I, ah, realized that I would be--they t o l d me, l i k e I would have to be doing a lot of resting. And be going out for walks and that would be about i t . In their e f f o r t s to understand the benchmark and perceive progress in their health, c l i e n t s attempted to anticipate what the experience would be l i k e for them. This helped them attach meaning to the event and determine i t s s i g n i f i c a n c e . Clients perceived that the discharge was a positive benchmark. They a l l expressed pleasure in going home. I was looking forward to coming home. . . . I was I wanted to get home because I f e l t sorry for my wife. She's working and then, the time she'd come home and take the dog out for a walk. And, ah, then she'd come in the hospital and not had any supper. And that kind of worried me. Generally, they f e l t well and were not nervous about being home. I was glad to go home. . . . Yea, I was fee l i n g pretty good. And, ah, I wasn't nervous after I got home. . . . They also warned us that we'd probably be nervous. And I wasn't. And I, I l i k e that. I l i k e the way they, you know, you r e a l l y don't want to know a l l , too 1 60 many gorey d e t a i l s but you want to know what the h e l l ' s going to happen, eh. You know what I mean? And I think X Hospital do a very good job on that. Oh well, the security, I suppose of, of being in a hospital setting where you, there's somebody constantly there that knows what to do i f something should happen. Ah, i t occurred to me once or twice but not seriously. It didn't bother me. Hasser (1979a) has indicated that c l i e n t s experience a letdown or loss of security upon leaving hospital even though patients are eager to return home to a familiar routine and environment. These actual accounts of the c l i e n t s , however, indicate that not only were they optimistic about being home, but they f e l t prepared to continue their recovery. For one participant, the teaching he experienced in hospital was helpful in preparing him for what to expect once home. Although a l l the c l i e n t s were pleased to be home, the recovery process was not without i t s problems. Five of the seven participants encountered some form of d i f f i c u l t y once home (e.g. constipation). This affected how they were feeling and their a b i l i t y to par t i c i p a t e in the recovery process. The problems that arose interfered with their progress and were perceived as setbacks. However, not a l l concerns professionals had for the c l i e n t s materialized. 161 Concerns. The problems that the c l i e n t s perceived were not the same as those depicted in patient education manuals. Perhaps th i s can be explained by saying the c l i e n t s learned the discharge information and consequently had no worries about those aspects of care. Or, the answer may be that the nature of c l i e n t concerns were very d i f f e r e n t from professional concerns. Dodge (1972) found that patients and professionals do d i f f e r in how important they perceive patient information. The two groups d i f f e r e d on information such as a c t i v i t y r e s t r i c t i o n s once home. In discharge teaching, professionals have considered pain management to be a concern in the discharge period. Although the c l i e n t s remarked on their sternal discomfort, they described i t as sore rather than painful and did not ident i f y i t as an overriding concern. Oh, I, I s t i l l f e e l sore. I, I, I s t i l l f e el a b i t sore. E s p e c i a l l y i f , i f I, when I'm walking. Like I'm s t a r t i n g to walk now. And, ah, I, I feel l i k e i t , up in, up in my upper part of my chest i s r e a l l y sore, and then the next day, i t , i t ' s somewhere else . . . I think i t ' s , i t ' s in the process of healing and, ah, maybe i t a l l depends on how, how I s i t or, ah, or how I move. This bone you know here, i t was s p l i t here right up and down. . . . It sort of goes past one another in 162 places once in a while. . . . But they t e l l me that in the paper [teaching information] they gave me. . . . It's not sore at a l l when i t does that but i t c l i c k s . Gives a l i t t l e nick. The expectation that the pain would continue once home d i f f e r s from Boisvert's study of convalescence following CABG (Boisvert, 1976). Of the six patients who attended group sessions following CABG, a l l were surprised to be uncomfortable at home, even i f they were told that muscular pain would continue for a few weeks. As w i l l be apparent in the ensuing accounts, pain was an accepted aspect of the recovery process and did not seem to surprise the participants in thi s study. Their teaching seemed to prepare them for the p o s s i b i l i t y that the pain would continue once home. Thus, i t did not become a major concern. I was told to expect pains just about anywhere for up to three months . . . That's what I was t o l d . I could expect . . . to be sore, yea. Well, they have to break, s p l i t your breast bone or something; sounds h o r r i b l e . But, anyway, i t ' s not bad at a l l . I'm not suffe r i n g . In a B r i t i s h study of CABG c l i e n t s interviewed over a 24 month period following surgery, Wilson-Barnett (1981) has found that the sternotomy wound was a major problem for her study's c l i e n t s . Of the 60 patients interviewed, 19 s t i l l had severe pain after one year. This i s in contrast to this c l i e n t sample. Wilson-Barnett (1981) has also i d e n t i f i e d that the leg 1 63 wound was another major problem for c l i e n t s . One t h i r d of the c l i e n t s had delayed leg wound healing requiring dressings while 14 of the 60 suffered pain which interrupted their sleep. The c l i e n t s interviewed in t h i s study did not perceive the leg wound to be problematic. The only time I was feeling them was when I walk and the pants s l i p . . . . Rubbing. And I, one, my leg, there's a s t i t c h must have come out and i t ' s open and i t weeps a l i t t l e b i t . A l i t t l e b i t of soreness down in here, and, ah, that's a l l . It's been sore the odd spot, you know. But just nothing to bother me, r e a l l y . I can just feel i t . But today i t ' s f i n e . But there's a l i t t l e numbness from here, from where they started cutting; they started cutting from here up. See, but from here down, i t ' s a l i t t l e numb in here [ankle]. My leg i s sore. that i s , r e a l l y , e specially in the cold weather . . . kind of a burning. It ' s , ah, b i t itchy and, ah, l i k e now I can f e e l i t now, i f I touch i t . One c l i e n t described a hematoma over the thigh as "sort of a puddin' coming below the cut." Although health professionals would consider t h i s a concern, the c l i e n t only mentioned i t in 1 64 passing. He did not consider i t to be problematic or a "complication". Another complication which one c l i e n t described appeared to be related to nerve damage involving flexion of the l e f t thumb. She seemed to be accepting of the d i s a b i l i t y . Because this thumb doesn't work yet. I think i t had, Dr. X said he thought i t had something to do with, ah, probably the way my hand was, ah, held, or holding or whatever they do during surgery. . . . I can't bend the thumb. So I have a great deal of d i f f i c u l t y writing, but I'm not worrying about i t because I don't worry about anything, anymore. Again, the c l i e n t drew on professional explanatory models to help her attach meaning to the phenomenon. However, i t was not a concern because she did not appear to relate i t to the healing process. Some c l i e n t s stated they were s t i f f and had trouble sleeping. I've gotta be careful turning [the neck]. . . . When I'm driving the car, I have to be very c a r e f u l . I have to swing myself around, eh. And I have trouble; I can't sleep on this side. . . .I'm sleeping on my back now which [ i s ] something I never could do before. And i t ' s quite sore in here and the doctor f e l t , sort of l i k e a dry socket [in the right shoulder]. Mind you, I, when you get into bed, you don't know 1 65 [laugh] which way to lay down. So you l i e on your back and then you end up on your side and you get a l i t t l e b i t s t i f f . When I l a i d on my side, I'd had a pain in here, in that side. When I l a i d around on t h i s side, I'd had a pain in that side and i t made i t kind of nasty . . . But one night I started to cough at 10 o'clock at night and I coughed right through ' t i l 7 o'clock in the morning. And I kept my pillow in and I held myself and kept coughing away. . . . And i t kind of played me out a l i t t l e b i t . Cl i e n t s were aware that this s t i f f n e s s interfered with their normal a c t i v i t i e s , but did not become concerned about i t . They accepted i t as "natural" and a part of the healing process. The available l i t e r a t u r e on recovery from CABG has remarked that fatigue, weakness and sleeping problems were common. In Wilson-Barnett's study, more than half of the participants expressed that their sleep was disturbed (Wilson-Barnett, 1981). Boisvert (1976), too, found that the patients were fatigued. Although three of these participants remarked on their altered sleep, only one.expressed that he f e l t noticeably weak. Fatigue would, therefore, not seem to be generalizable. In addition to changes in their sleep, c l i e n t s also experienced changes in their neurological status. I'm a l i t t l e hazy in the eyes. L i t t l e hazy. You know the t e l e v i s i o n ' s not bright; i t ' s , ah, i t ' s bright, 166 but i t ' s foggy, l i k e . I have volts of e l e c t r i c i t y which I think i s normal after this type of surgery. Go through, when I put my arms up l i k e t h i s , I can f e e l , l i k e what I would think would be volt s , when I go a certain way, espec i a l l y , do you see that? Clients interpreted their symptoms as part of the experience of CABG. They did not perceive these as affecting their progress. Again, the theme of determining progress was a recurring feature of c l i e n t s ' i l l n e s s experience. Rather than being concerned over the t r a d i t i o n a l concerns professionals have for discharged c l i e n t s , the c l i e n t s expressed worry over s i g n i f i c a n t interferences with normal routines and a c t i v i t i e s . The concerns were very i n d i v i d u a l i s t i c but they were a l l perceived as disrupting c l i e n t s ' everyday l i v e s . Clients perceived concerns based on the notion that these events were either threatening or an inconvenience. Boisvert (1976) found that c l i e n t s convalescing from CABG continued to express uncertainty about a c t i v i t i e s once home. Thus, progress was not a pre-determined smooth course, but a passage of coping and carrying out usual routines. One concern which surfaced has not previously been i d e n t i f i e d in the l i t e r a t u r e . Two of the c l i e n t s were worried about voice changes that they perceived to be present following surgery. But my voice, even now, sounds d i f f e r e n t . . . . It 167 s t i l l sounds d i f f e r e n t . . . . It's not as loud. Ah, my voice, before was, was a strong voice and, ah, now, ah, i t ' s kind of l i k e , ah, weak—an old man's voice. . . To me, i t doesn't, i t doesn't sound l i k e me. I worry about that [voice] you know, not ea s i l y recovering. Because, you know, as a minister, without voice, how can I do any more job? I worry about that. . . . I don't know. Maybe I, I'm a f r a i d of that l a s t i n g a long time you know, not able to speak out right. The voice changes provoked worry because the c l i e n t s perceived i t departed from their picture of health. Gastrointestinal d i f f i c u l t i e s were the most commonly expressed concern. After I got home I was a b i t , urn, I think I was, ah, quite hyper' in a way about being home and very pleased and ah, maybe a b i t excited. And i t [diarrhea] kept on for a l i t t l e while after that. But, ah, in, at home, now you see they had me on medication and then when I got home, he prescribed a medication--two p i l l s in one [ a n t i - p l a t e l e t agent]. . . . And they disagreed with me. . . .My stomach would be upset. I'd take three a day and, ah, and ah, then for three hours a f t e r , i t would, i t ' d be upset. 168 Constipation . . . was one that came up. That was pure h e l l . And trying to deal with that and feeling bad. Hurting a l l over. Leg and chest. Trying to deal with that was r e a l l y serious at one point. . . . Oh, I was worried more of straining, hurt that I wasn't worried. I was worrying more about possibly dislodging some surgery. My new vessels. The c l i e n t ' s concern that straining would damage the surgery has been previously described by Blacher (1970). Throughout c l i e n t s ' accounts, i t is evident that they interpreted their g a s t r o - i n t e s t i n a l disorders as hampering recovery. They were troublesome because they were perceived as varying from a normal recovery. Other c l i e n t concerns were individual ones. One participant expressed worry over his perceived lack of concentration and the implications t h i s had on his l i f e . Because, ah, after the operation, i t seemed to be that I had, the l e v e l of the concentration. . . . Sometimes friends came to see me, v i s i t me and talk with me few minutes. At f i r s t few minutes I got i t . After a few minutes, I don't know that I seem to be that absent-minded [ s i c ] . I don't know about [what] they're talking about. And I have to pay my very, you know, th i s concentration, attention to l i s t e n to them. Otherwise, me, I forget. I dunno whether t h i s , i s ah, influenced by the medicines or my age or what, I dunno. I never happen, such happening formerly. . . . 169 Even no concentrations, that means that — useless man. Nothing to do in the world. I worry about, you know, to be useless now. He perceived his symptoms as being a setback in his progress and health. Professionals have i d e n t i f i e d that c l i e n t s can experience changes in their mental acuity following open heart surgery. In a study of patients who had non-CABG types of heart surgery, Frank, Heller, Kornfeld and Malm (1972) attempted to quantify the change in i n t e l l e c t u a l performance among c l i e n t s . They concluded that the magnitude in the changes would probably not noticeably a f f e c t day-to-day i n t e l l e c t u a l adjustment. Boisvert (1976), however, found that c l i e n t s recovering from CABG were able to perceive the change in their i n t e l l e c t u a l functioning. Clie n t s were i r r i t a t e d by not being able to concentrate on minor tasks l i k e reading. From the c l i e n t ' s viewpoint, then, subtle changes in mental a b i l i t i e s were perceived. Although Boisvert (1976) found c l i e n t s were pre-occupied with their health status and concrete behaviors, the participants in t h i s study also voiced concerns about non-somatic problems. For example, two c l i e n t s were concerned about their follow-up medical care. I was nauseated and not fe e l i n g very good and, ah, I was a l i t t l e concerned that I couldn't get to see a doctor. . . . Ah, the other thing that's gone a l i t t l e b i t wrong i s that we were misled a l i t t l e b i t . Urn, I thought I had to be here for six weeks after the operation for further medical care. That's why we took the apartment [in town]. And instead, I should have been under the care of my own family doctor who's in X Town. So, t h i s , ah, created some problems. . . . And, ah, then the other complication i s been that Dr. X [cardiologist] has gone away. She's away on a lecture tour and a vacation. I had to c a l l him [doctor] about the prescription or a question about, ah, a c t i v i t y or something 'cause he was my last c a r d i o l o g i s t . I couldn't ask [the surgeon] or my regular doctor. And he, ah, he never returned the c a l l . That upsets me more than anything. That, at least have the secretary c a l l and say, "don't c a l l my o f f i c e ever again, you clown." But I kinda worried a l i t t l e b i t . Because I wasn't taking any p i l l s and I, you know, others [other patients] are taking p i l l s [ a n t i - p l a t e l e t agents]. I was concerned about them stopping my medication [Inderal] and I was right. And I also was concerned that my pulse rate went way up after I got home and wouldn't come down. Professionals were seen as a necessary adjunct to c l i e n t s ' recovery. When access to them was denied or their care was 171 questionable, c l i e n t s became concerned. Because c l i e n t s had clear ideas about what constituted a problem free recovery, any deviation from their plan aroused concern. In addition to having concerns about their recuperation, c l i e n t s also began to think ahead. For one c l i e n t , the uncertainty about sick leave, layoff and unemployment was a real concern. But there's problems. We don't know what's happening to us. So that, that's a problem, worry, isn't i t , M [wife]? What's going to happen to us? Professionals have i d e n t i f i e d that feelings about returning to work can range from fear to eagerness (Boisvert, 1976). It is apparent that once c l i e n t s were assured of their progress, they began to anticipate the future. The recovery at home, thus, was not necessarily free of concerns. When c l i e n t s determined that certain events were a concern and p o t e n t i a l l y harmful to their progress, they went about managing these setbacks. Coping with setbacks. As in previous phases, c l i e n t s used commonsense therapies to deal with some of the problems they encountered while home. The theme of the uniqueness of the coping strategies used was evident. I was so dry-mouthed in the hospital there and after I 172 came home. It didn't matter what I took to drink, i t ' d s t i l l be there. . . . Just take an apple. And cut i t up into bite sizes. Just take three, four of them bite sizes and chew.them. By golly, i t takes that dryness away. . . . Oh, i t stays with you for a long time. I understand without eating, not easy to get speedy recovery. So that I try my best and treat a l l the food as medicine. I have to swallow i t . I even try my best but I s t i l l have no, no appetite. By searching their past experience for ways to help themselves, c l i e n t s went about dealing with any problems that arose. One c l i e n t f e l t that taking Dyazide would reduce the swelling in the leg where the vein was removed . For her, i t made sense that a "water p i l l " would help her problem. The concerns which remained were those where these commonsense types of therapies did not work. Clients also incorporated professional kinds of therapies into their coping strategies. They used their physicians' advice in helping them deal with setbacks and reduce their worry about them. It's maybe just fat that's b u i l t up there, below [hematoma]. . . . He [doctor] said put a hot pad on i t and he said that would reduce i t , so that's what I'm doing. 1 73 My family doctor suggested I get a b a l l [for the problem with my thumb]. And try and work i t . . . . Ah, i t helps, i t helps. It's strengthening my thumb. When problems did arise at home, c l i e n t s decided how to deal with them. Two c l i e n t s chose to resume prior medications without seeking medical approval. And I was scared to take i t [Indocid] and I couldn't--my family doctor was away at some convention or something and [the receptionist] in the o f f i c e , she, she wouldn't say. And I said, "Oh no, I didn't expect her to say i f I could use i t . " But I went ahead and used i t anyway. I also took one chance. I went and put myself back on, ah Tagamet 'cause I was getting nauseous. And I figured i t a l l out and I figured the Tagamet wouldn't hurt. . . . Well, I've been sick for a long time, so, you know, you get to know, eh? . . . You get to know a lot about them [medications] and their e f f e c t s and you know what you can pretty safely do. Although I don't l i k e to experiment but I. couldn't get ahold of the doctor. In these instances, c l i e n t s r e l i e d on their past experience to help them decide what to do. They explained their choice based on the benefits they perceived would r e s u l t . The theme of choices was apparent in how they managed their concerns. In a similar vein, another c l i e n t decided to embark on his 174 own a c t i v i t y program before consulting his physician. And then, ah, about the middle of the week, I decided well, I can't go by their prescription, what they said, you know. So, I, ah, I decided to go outside. And I went out for a block. And I f e l t good, you know. The c l i e n t did not accept the professional explanatory models regarding his treatment regime and decided to follow his own pr e s c r i p t i o n . One c l i e n t elected to determine the nature of his pain by himself. I had some pain. I was a l i t t l e b i t suspicious of i t and I took a n i t r o ' . And i t didn't touch the pain at a l l . . . . I concluded that i t wasn't angina so I , I dropped i t . By t h i s point in their i l l n e s s , c l i e n t s f e l t they had b u i l t up a repertoire of ways to deal with symptoms. They r e l i e d on their previous experience to guide them rather than professionals. It i s apparent that these c l i e n t s weighed the pro's and con's of their actions in terms of perceived concrete benefits, not necessarly medical ones. Instead of seeking medical attention as in previous phases, they tended to be more independent in their decision-making. Perhaps t h i s was because they perceived their i l l n e s s as being "cured" and less threatening. In r e l a t i o n to c l i e n t s ' preparation for discharge, only two of the c l i e n t s s p e c i f i c a l l y mentioned teaching programs as 175 benefitting them. In a study of what patients f e l t h e l p f u l for discharge after open heart surgery, Meyer and Latz (1979) have found that the c l i e n t s did not perceive the content of their teaching booklets p a r t i c u l a r l y h e l p f u l . (Content included heart function, i n c i s i o n a l care, a c t i v i t i e s and complications). Rather, areas such as the type and severity/duration of chest pain and more s p e c i f i c s about a c t i v i t y were perceived to be more he l p f u l . Based on what this study's c l i e n t s remarked upon, they had clear-cut ideas on a c t i v i t i e s and referred to their printed sheet. However, other sources of information were not generally evident or perceived as useful in recovery. In addition to using commonsense approaches to deal with problems that arose, c l i e n t s also used approaches to aid in their o v e r a l l recovery. They f e l t these things would help them continue t h e i r progress and a new "lease on l i f e " . A l l decided to change the i r d i e t . I don't eat animal fats anymore. I don't drink cream. I don't use cream. I don't use ice cream. I don't use butter. Urn, and I haven't used s a l t for a long time and very l i t t l e sugar. And a l l t h i s kind of thing. And we use a l o t of grains and make our own bread and things l i k e that. Ah, yea, there's a lot of things I wanna eat that I, than I'm not gonna damn well eat, you know. Like, ah, she [wife] had this ham, you know. Great big, beautiful ham. and I didn't have any of i t , you know. 1 76 . . . This, these things I hafta, you know, I just gotta r e a l i z e I gotta cut out. They perceived the usefulness of diet change in d i f f e r e n t ways. Some participants drew on their prior knowledge about die t , but even with t h i s information two f e l t the need to f i n d out more about their d i e t s . What, the thing that surprises me is that I didn't get any directions at a l l . I asked one of the nurses, ah, a few days before I was to be discharged about a d i e t i c i a n . I was quite surprised that Dr. X had stroked o f f , ah, that I wasn't to see a d i e t i c i a n . Because the nurses told me i f the doctor wants you to see a d i e t i c i a n , h e ' l l send one up. And apparently there was no guidelines whatever about what to eat or what type of foods, or, ah, sugar. The only thing i s I couldn't have sa l t on my tray. But the food i t s e l f was salty that they used to get in the h o s p i t a l . And there was nothing mentioned whatever. And there s t i l l hasn't been anything mentioned about food. . . .I'm wondering why i t i s that this is a cholesterol build-up in my a r t e r i e s , why they should not suggest, ah, certain things not to eat. Which [sic would] you not think this would be l o g i c a l ? . . . I am going to ask Dr., the doctor about that on Thursday. Meyer and Latz (1979) have also found that diet was a concern to the c l i e n t s they studied who were discharged following CABG. For the c l i e n t s in this study, understanding the reasons for 177 their actions was a coping strategy. In addition to seeking out information about their diets, c l i e n t s also expressed c u r i o s i t y about their care and i t s rela t i o n to a cure. I was curious. After I hung up [the phone], when he [the doctor] said, "Well, i f i t [the bypass grafts] would have clotted, i t would have happened by now." and then after I hung up and I said, "Why didn't I ask him? Well, what were the symptoms?" This c l i e n t was trying to understand the significance of clotted grafts to him. During their recovery, c l i e n t s were s t i l l occupied with understanding the nature of their disease. But then of course a build-up l i k e that through the years, ah, I suppose i t , i t s t i l l keeps on whether I buil d up thi s cholesterol in my system, I don't know. Because the doctor told me at one time, I asked about that. And he said, i t was, urn, not, ah, i t wasn't above normal. It was high normal, but i t wasn't over the limit--my, the serum cholesterol wasn't over the l i m i t . And, ah, so I took that for granted. And I didn't think too much about i t . But then after I found out, then I wondered i f , i f I'm the type of person that just automatically has an over-supply in my system and i f that, i f that pa r t i c u l a r problem w i l l keep on escalating in spite of the operation. Or i s this ah, artery that's been or thi s vein that's been 178 used w i l l also, ah, gather cholesterol or not. . . . How do they t e l l i f your, i f your, ah, thi s operation has been successful? Do they have to do another ang iogram? In her e f f o r t to see progress and benchmarks, the participant needed more information to make sense of her concerns. One c l i e n t remarked that he would now l i k e to know more about the CABG. Now, what I would l i k e to know i s what did the doctor do to, ah, where did he put the bypasses? I'd l i k e to get that. Meyer and Latz (1979) have also found that some c l i e n t s remain unclear about what had been done during surgery once they were home. This p a r t i c u l a r c l i e n t had e a r l i e r remarked that he never thought about the actual procedure prior to the operation. Two c l i e n t s coped with the surgery by changing their attitude toward their l i v e s . These participants f e l t that changing their approach to l i f e would be b e n e f i c i a l . But I'm t r y i n ' ta, I'm t r y i n ' to avoid a l l stress. But my wife says I have a negative approach to everything. And I'm t r y i n ' to get out of i t , you know. . . . Everytime I, she says, makes a suggestion, I, I, I'm against i t , you know, or, or I ' l l say, "Oh, I dunno that's gonna, you know, gonna happen or whether that's any good or not, you know." But she says, which i s bad, you know when I'm, I'm t r y i n ' to get a happy outlook, I guess. Well, I been in pain 1 79 for so long that everything to me was negative. So now I l i v e from day to day . . . and when I wake up in the morning I say, "Thank-you Lord for another day." Clients a.lso decided what changes were necessary in, their l i v e s to effect a recovery from their i l l n e s s . For one participant, the i l l n e s s motivated him to stop smoking. They told me and I didn't wanna smoke before the operation. Because they told me, "The more you smoke, the harder i t was gonna be." The doctor and those nurses told me that. . . . So that morning I was out there waiting for him [prior to the angiogram], I had that, my la s t c i g a r e t t e . . . . It's something I wanna beat. I wanna beat that. I s t i l l I have a strong urge . . . And I just wanna beat that more than anything. Participants also perceived that a plan for a c t i v i t y was benef ic i a i . Ah, well I had this l i t t l e paper that . . . Dr. X gave. Yea, and i t said from each day I was to do a l i t t l e more. The c l i e n t s had a clear idea about how they were to increase their a c t i v i t y in a gradual fashion. They saw progress in being able to do more each week. In her study of c l i e n t s recovering from open heart surgery, 180 J i l l i n g s (1978) found that c l i e n t s believed their recovery would proceed more quickly at home and that they had concrete plans for d a i l y a c t i v i t y . The idea of planning and goal-setting i s apparent in the following accounts. So, ah, now, course l i k e I said, now I'm walking a l i t t l e further than the, the eight blocks. And tomorrow, I ' l l add another block to i t . And eventually maybe by the end of this week, I should be able to do a mile. Well, I was just intending to do more every day unless I f e l t too t i r e d . Granger (1974) has postulated that c l i e n t s naturally formulate goals in response to the c r i s i s of CABG. Based on how the c l i e n t s managed their a c t i v i t y programs, goals would appear to be an important way to manage the recovery and see progress. When concerns arose once home, c l i e n t s seemed better able to use d i s t r a c t i o n as a coping strategy. What I'm going to do though, i s I'm gonna s t a r t , start in on my dark room again. I just sat down, I took, read, would read and get my mind off i t [nausea]. They dealt with their setbacks in ways c h a r a c t e r i s t i c of them. The support of the family in making changes was seen as h e l p f u l . The theme of the shared nature of the i l l n e s was strong in this last phase. 181 My wife, ah, keeps, ah, after me, she's, "You're too anxious." She, ah, everytime she talks to somebody, "Well, he, he can't get over the idea that he's s t i l l sick, you know. He figures that he should be a hundred percent, you know. Like you wanna be, well you wanna be two weeks, you wanna be four weeks from now, you know, in two weeks." . . . I think they're [the suggestions' are] good ones. I think she's on the right track. The s o c i a l support of families has also been echoed in the l i t e r a t u r e (Boisvert, 1976; Wilson-Barnett, 1981). That spousal support is essential for the c l i e n t to recover has been implied. Although the c l i e n t s regularly received analgesics in hospi t a l , only three continued their usage. They were reluctant to do so and did not use analgesics on a regular basis. If need, i f pain, take a drug. I don't want [to] take too much. . . . You know the drug w i l l help my pain. On the other hand. . . . I don't want to take too much of the, of the drug. Boisvert (1976) has s i m i l a r l y found that her study group hesitated to take analgesics once home. Clients also constructed timetables for the pain to subside. I, ah, was hoping that the soreness would go sooner, but I'm now made up my mind that i t ' l l be a long time before a l l the soreness goes. I expect i t ' s gonna to go very slow and be two, three months, at lea s t . 182 Clients were interested in monitoring their progress and improvement at home. The idea of feeling better seemed to strengthen their resolve and increase their hope. The la s t two days my strength has been coming back quite w e l l — q u i t e a b i t stronger. And I f e l t very weak. I was a l i t t l e disappointed in that, but I mean, I've come to terms with that. I re a l i z e that i t ' s going to take a long time before I get a l l my strength back. But my mind seems to be clearer. And, ah, I fe e l better. Progress was measured in terms of the disappearance of previous symptoms, whether d i r e c t l y related to coronary artery disease or not. Before, oh for six years, my ankles and up my legs, close to my knees. You'd just think i t was a bunch of worms and they're a l l moving in underneath your hide . . . Some nights I, I just couldn't go to sleep right away for feeling t h i s , ah, movement l i k e that. . . . Since the operation, bingo! . . . Nothing. My God, I haven't got that. It's gone now. And I walked with a bus driver that I know. . . . I hadta pretty well keep up with him. And I didn't, goin' up that h i l l , I didn't get, I was a l i t t l e short of breath, you know, pu f f i n ' but no angina. So, they [doctors] got 'er! 183 Progress was also measured in terms of a return to familiar a c t i v i t i e s . Once I found out that I could turn over on my side and f l i p over on my other side, I knew I was a l r i g h t , 'cause that's the way I sleep. I don't have to . . . gasp to much to get breath. . . . It's easier to breathe because my lungs are getting more blood now than they used to. They function better. One c l i e n t assessed progress in terms of the cues received from her doctor. He [doctor] was very pleased. And he told me that he was pleased with my progress and I guess that meant the operation was successful. The theme of marking progress has not previously been described in the l i t e r a t u r e as a recognized coping mechanism for c l i e n t s . However, i t would appear that improved status was a benchmark for c l i e n t s in their recovery. Comparing themselves with others or expectations was a way for them to mark time as well as maintain hope. Once home, the c l i e n t s continued to see progress and to manage their recovery. Because the operation marked a change in the course of their i l l n e s s , they also were trying to make sense of their health. 1 84 Perceptions of the experience. Generally, the c l i e n t s perceived the operation to be b e n e f i c i a l . In retrospect, they unanimously had posi t i v e feelings about the experience. I think i t was worthwile. . . . Best thing that ever happened. . . . 1 , I think so, because, ah, I walk up to the corner and, and, I don't get any pains, any burning pains l i k e I had before. And, ah, I, and I even walk, l i k e up l i t t l e h i l l s and I don't feel nervous anymore. So, to me, i t was worth i t . He [the doctor] did a good job as far as I'm concerned. . . . Yea, i t was more than worth i t . I would say, i f anybody had any pains now, ah, l i k e a guy my age. . . . I could get i t done now rather than wait ten years. I would. In my opinion now, I wouldn't want to wait ' t i l I'm 65 or 70. . . . Lot of guys, the older they get, the more problems, you know, and I think the more dangerous. So i f you're 55 and you got these pains and the doctors says, "Well, we can give you these p i l l s and you know, y o u ' l l probably be a l l rig h t . " I would say, "No. Let me have the operation. Now, you know." That's the way, what I , that's the way I figure. If you've got that doctor down there; he knows what he's doin' and, ah, get those bypasses in and you're no more p i l l s and you're 185 as good as new. Just keep on your d i e t . 'Cause you gotta stay on a diet anyway, don't you? If you don't get the operation, more s t r i c t e r . Because you gotta watch that cholesterol l i k e a hawk, don't you? Clie n t s f e l t positive because they perceived the operation removed the symptoms of their i l l n e s s . They were also pleased with their progress and grateful for a return to health. I went through with i t and I'm very pleased. . . .I'm very happy that I did. I feel l i k e the whole thing, l i k e I said, I t o l d M [wife], was almost l i k e a religous experience. I t , i t was, r e a l l y . And I'm not p a r t i c u l a r l y a religous man, I don't want you to think that. I wouldn't want to say i t was, but I dunno, I feel now that I owe something. I'm assuming that the operation's a l l a hundred percent success [laugh]. . . . Well, I feel that, ah, also, too, look at the cost to the, the people of t h i s operation. In the States, i t would cost twenty thousand d o l l a r s . That's a very costly thing and I, I think that I owe society something for that. You know, you have to make i t worthwhile. In addition to feeling p o s i t i v e about their progress, c l i e n t s also were hopeful about their recovery. The theme of hope was a strong aspect of their recovery at home. In a sense that I had to do what was necessary for my 186 recovery, which wasn't always easy. It was simple, but i t wasn't easy, i f you know what I mean. Because simple is simple and easy is easy and the two don't necessarily mesh always. . . . But since that time, I've been, i t ' s i t ' s been a piece of cake. And I'm very pleased with me. I would say the recovery has been real good. They were relieved about the absence of angina. The c l i e n t s perceived their actions as helping themselves get better. This was po s i t i v e . And, ah, so, l i k e I say, so far, so good, you know. I haven't had any angina. However, one man tempered his optimism about the disappearance of his symptoms. But i t ' s s t i l l hard to t e l l . I'm not, I, yet r e a l l y convinced I won't get angina when I start pushing myself. Well, i t ' s ; I gotta prove i t , eh. The c l i e n t s were also very clear in d i f f e r e n t i a t i n g angina from i n c i s i o n a l pain. Of course, I'm sore, here, right now, but i t ' s not that angina. Clie n t s determined progress toward health by comparing their feelings to those prior to the operation. The c l i e n t s expressed their hope for the future. Of those who were able to work, they had d i f f e r i n g views on returning to work as opposed to r e t i r i n g . 1 87 Oh yes, I plan to go to work ' t i l I'm 65 years old. So I don't know when, r e a l l y , as I can work normally. Of course, you know, I am now nearly three weeks. But the church, so many things. You know, but I hope, when I ready to get to work, I ' l l work. . . . I believe that God w i l l give me a very fast recovery and then do, ah, my work, the work as usual. And, I l i k e to r e t i r e now before I get too old, you know while I'm s t i l l young enough. . . . I ' d l i k e to stay off for the rest of the year, anyway. . . . It's [X month] already and, ah, and I s t i l l have, I s t i l l have, you know, pains in my chest, so, I mean, why, why rush i t ? Maybe I might have to work for two, three months of the year to do the extra things we want. But then I could maybe do what I want. . . .I'm looking forward to i t . But as I get stronger, I'm going to see how that works now. And what I intend to do now i s to get more and more active, l i k e we had a good walk this morning. . . . I l i k e walking. And I l i k e to do, well I l i k e to be in the country, too. I, I l i k e to be with people, but I l i k e being in the country, too. And I l i k e to do my work in archaeology. . . . There's l o t s of work I'd l i k e to do. 188 One c l i e n t expressed a f a t a l i s t i c attitude toward the ongoing nature of the disease. He f e l t accepting of a repeat operation i f he needed i t . Yea, you can't do nothing about i t . If i t happens again, I guess you, well just have to go i t again. . . . 1 , 1 mean, what can you do about i t ? Through his experience in the hospital, this participant became aware that a repeat CABG sometimes was necessary. Although this came as a shock to him, he was able to reduce his concern by making sense of the repeat operations. My understanding was that i t , they, they; I don't care, they did three on me. But some people have had four or five done. So that means there's a lot more ar t e r i e s that could be, ah, plugged up. Maybe I might have some more that are plug up and then maybe not as bad. The c l i e n t made sense of the notion of repeat operations by rel a t i n g i t to the disease process. Although the c l i e n t s r e a l i z e d the chronic nature of their disease, they s t i l l maintained hope in medical science. The only thing i s , ah, I was reading t h i s a r t i c l e about laser beams. I just hope, they, next one, time I go there, I hope they have that. As a theme, hope was s t i l l a prominent and e f f e c t i v e coping strategy. 189 Summary In th i s chapter, the i l l n e s s experience of the c l i e n t s has been presented in a chronological sequence according to benchmarks. The explanatory models contained in c l i e n t s ' accounts have been compared to pertinent l i t e r a t u r e . Where present, common aspects of the entire i l l n e s s (themes) have also been discussed. 190 CHAPTER 5 Summary, Conclusions and Implications for Nursing Summary and Conclusions The focus of thi s study has been on the i l l n e s s experience of c l i e n t s with coronary artery disease and their recovery from coronary artery bypass grafting surgery (CABG). The purposes of the study were to determine how c l i e n t s perceived their i l l n e s s and to ide n t i f y what concerns c l i e n t s had about their recovery once home. By e l i c i t i n g c l i e n t s ' viewpoints on their sickness, insight was gained into how they made sense of their i l l n e s s and managed i t . Because i l l n e s s i s a personal event shaped by sociocultural forces, people can interpret sickness in di f f e r e n t ways. Discrepancies between what c l i e n t s and professionals believe about i l l n e s s can occur. In order to plan and give e f f e c t i v e patient-centered care, professionals need to understand how c l i e n t s view i l l n e s s . Nursing care that addresses c l i e n t s ' concerns about their i l l n e s s not only can help them manage their sickness, but also speed their recovery. In thi s way, ef f e c t i v e care can reduce c l i e n t s ' dependency on an expensive health care system. The discrepancy between lay and professional 191 interpretations of i l l n e s s has been addressed by Kleinman (1978) in his c u l t u r a l system model. In his theory, individuals interpret i l l n e s s based on the s o c i a l positions they occupy and the systems of meaning they employ. Thus, lay people in the popular domain of the health care system would explain their i l l n e s s in ways that are d i f f e r e n t from professionals. The explanatory models about i l l n e s s would therefore vary between c l i e n t s and professionals. To determine c l i e n t s ' viewpoints and their explanatory models, a phenomenological method was used. In t h i s q u a l i t a t i v e approach to data c o l l e c t i o n , the researcher e l i c i t e d c l i e n t s ' viewpoints through semi-structured interviews directed at exploring how c l i e n t s retrospectively perceived their i l l n e s s . The inter-subjective nature of the interview allowed the researcher to understand how c l i e n t s made sense of their i l l n e s s . In their accounts, the c l i e n t s described their perceptions and how they attached meaning to the events that comprised their i l l n e s s experience. Their viewpoint and concerns became evident as they explained how they understood and coped with i l l n e s s . The accounts were analyzed so as to preserve the flavour of c l i e n t s ' explanatory models. During the data analysis, i t became apparent that c l i e n t s understood their i l l n e s s and recovery from CABG by attaching meaning to certain aspects of the entire experience. Although the c l i e n t s interpreted these aspects d i f f e r e n t l y , they commonly described similar reference points or "benchmarks" which highlighted their i l l n e s s 1 92 experience. These benchmarks provided the investigator with a means to analyze the data and understand c l i e n t s ' viewpoints. In attaching meaning to events and phenomena of their experience, c l i e n t s understood their i l l n e s s as comprising d i s t i n c t phases. Their use of benchmarks to structure time was a way to make sense of their experience and see progress toward health. Thus, because benchmarks were soci o c u l t u r a l phenomena, they were congruent with Kleinman's conceptualization of explanatory models (Kleinman, 1978). To understand c l i e n t s ' experiences, the investigator also brought her sense of structuring time to the data analysis. Thus, the benchmarks as i d e n t i f i e d by the c l i e n t s guided how the phases were understood and divided. In this sense, the structure of c l i e n t s ' experiences resulted from both the expressed and perceived benchmarks of the i l l n e s s . The phases of the i l l n e s s experience were: 1. the r e a l i z a t i o n of i l l n e s s , 2. the plan to undergo CABG, 3. the recovery from CABG while in hospital, and 4. the recovery at home. The benchmarks were: 1. the appearance of symptoms of coronary artery di sease 2. seeking medical care and diagnosis, 3. the worsening of the i l l n e s s , 4. undergoing angiography, 5. deciding to undergo CABG, 1 93 6. waiting for the operation, 7. having the operation, 8. the experience in the Post Anaesthesia Recovery Room and Intensive Care Unit, 9. the experience on the ward, and 1 0 . the discharge home. Although benchmarks were one aspect of how the c l i e n t s explained their i l l n e s s , they were not the only explanatory models present. Throughout the phases, common themes emerged as s i g n i f i c a n t in c l i e n t s ' meaning systems. These themes were feeling-states or ways of coping with i l l health . Although the themes varied in intensity throughout the i l l n e s s , their presence gave continuity to the entire experience. The commonalities between phases were s i g n i f i c a n t in understanding how c l i e n t s perceived their i l l n e s s experience. The themes were: 1. hope, 2. trust, 3. choices, 4. determining progress, 5. unique coping strategies, and 6. the shared nature of i l l n e s s . The i l l n e s s experience as understood by the researcher, then, was a chronological series of experiences with themes present throughout. It was evident that the c l i e n t s made sense of their i l l n e s s and managed their i l l health in commonsense ways. Cli e n t s ' 194 explanatory models were very d i f f e r e n t from professional ones. Whereas professionals would focus on the disease model, pathophysiology and causation, the c l i e n t s referred to past experience, b e l i e f s or s o c i a l l y accepted ideas to explain their i l l n e s s . In certain instances, the influence of the professional explanatory models was evident (e.g. understanding of drugs). Nevertheless, the overriding perspective was that of the popular domain. Ill n e s s was described in terms of concrete symptoms and causes. The appearance of angina was linked to diet, lack of exercise and other observable phenomena. As c l i e n t s recovered from CABG, their concerns were primarily focused on concrete behaviors which interfered with their usual pattern of l i v i n g (e.g. g a s t r o - i n t e s t i n a l d i f f i c u l t i e s ) . Throughout their i l l n e s s , c l i e n t s assessed their health in t h i s commonsense way of making comparisons between what they perceived to be normal physiological function and their present s i t u a t i o n . C l i e n t s had insight into their health and were aware of subtle bodily cues. They made sense of their feelings (angina, post-operative pain) by relying on knowledge acquired through previous experience. I l l n e s s recognition had both cognitive and a f f e c t i v e elements to i t . Although fear and anxiety were present, c l i e n t s also expressed a need to understand why they were fee l i n g as they did. Understanding (from a lay , not a professional perspective) was a useful coping strategy. Being i l l caused c l i e n t s to change their behavior in order to cope with the sickness. The majority of coping strategies 1 95 employed by the participants were unique ones (humor, s p i r i t u a l guidance, d i s t r a c t i o n ) . Others, however, were more universal such as denial. A l l c l i e n t s found that marking progress was a b e n e f i c i a l coping strategy. Regardless of the problems perceived by the c l i e n t s , i l l n e s s was managed in a fashion c h a r a c t e r i s t i c of each person. Hope and a positive attitude toward health care was s i g n i f i c a n t to the participants. Hope enabled them to l i v e with their chronic i l l n e s s and manage from day-to-day. Even when the quality of care was less than i d e a l , c l i e n t s continued to trust and have f a i t h in their care-givers. They believed that medical science offered them some hope for a reprieve from i l l n e s s . Clients put their trust in physicians and other health professionals based on global c r i t e r i a . Surgeons were "good" i f the grapevine stated so. The symbolic view of the physician as "curer-healer" was very much in evidence. Regardless of their expertise or interpersonal s k i l l s , doctors were automatically trusted and valued. Nurses, on the other hand, were perceived to be deserving of trust primarily based on their sympathetic, caring interventions. However, not a l l nursing care was perceived to be p a r t i c u l a r l y sympathetic nor helpful by the c l i e n t s . They expressed concern over feeling depersonalized by nurses. Although a l l the c l i e n t s were extremely grateful for the overal l care they received, this gratitude was tempered by their concerns about nursing care. The "busy-ness" and lack of concern on the part of nurses 196 was c i t e d as a common barrier to e f f e c t i v e care. Not only did some c l i e n t s perceive themselves to be misunderstood, but also poorly cared for. Contrary to professional b e l i e f s about patient-centered care, i t i s evident that such care is only an i d e a l ; i t is not always r e a l i z e d . The di s p a r i t y between lay and professional views on i l l n e s s created d i f f i c u l t i e s for c l i e n t s in understanding and managing their own i l l n e s s . They were aware of the exclusiveness of professional explanatory models. However, in order to become healthy, they tolerated these explanations and managed their i l l n e s s in popular ways. Regardless of their perceptions on the qua l i t y of care, the strong hope and trust in professionals helped the c l i e n t s make choices about their care. Esp e c i a l l y in r e l a t i o n to deciding whether or not to undergo CABG, c l i e n t s ' f a i t h in their physicians was an important factor in the process. Because they trusted doctors and were hopeful that CABG would be b e n e f i c i a l they were accepting of medical advice. Although the tru s t , at times, appeared "blind", a l l the c l i e n t s expressed how i n f l u e n t i a l i t was in their decision-making at various points in the i l l n e s s . Clients used commonsense ways in deciding how to manage their i l l n e s s . When a symptom appeared, the c l i e n t s r e l i e d on past experience or f a i t h to help them deal with their concerns. They weighed the pro's and con's of various options (taking medications or not), but always reduced i t to the l e v e l of concrete behavior. Risk was perceived in terms of continued 1 97 symptom appearance, not distant e f f e c t s on other organ systems. The desire to be "normal" and without signs of i l l n e s s was a potent motivator for some c l i e n t s to decide on a course of action. Choices, however, were often i n t u i t i v e ones based on feeling-states, not medical knowledge. Throughout their i l l n e s s experience, c l i e n t s referred to their families and spouses as being suportive. In a l l the accounts, i t was evident that c l i e n t s did not cope with their i l l n e s s alone, but shared the r e s p o n s i b i l i t y for managing i t with their families. This sharing was a* valuable coping strategy for the c l i e n t s . The concerns which arose during the i l l n e s s were indiv i d u a l i z e d ones. They changed as the i l l n e s s progressed. Angina was an early concern, but after CABG, this concern diminished in magnitude. Once home, c l i e n t s ' concerns were di f f e r e n t than those presented in professional l i t e r a t u r e . The concerns professionals had about discharged c l i e n t s f a i l e d to materialize. The kinds of problems that did arise were of a concrete nature (e.g. voice changes). These concerns were often not anticipated in ho s p i t a l . Again, the discrepancy between professional and popular explanatory models created barriers to ef f e c t i v e care. Clients were so pleased to go home that they tended to avoid a n t i c i p a t i n g any d i f f i c u l t i e s . Nevertheless, e f f e c t i v e preparation for discharge and dealing with c l i e n t s ' concerns was not f u l l y r e a l i z e d . Gaining insight into how c l i e n t s made sense of their i l l n e s s revealed how d i f f e r e n t l y c l i e n t s perceived i l l n e s s as 198 compared to professionals. While in the health care system, the popular viewpoint is frequently ignored in l i e u of professional explanatory models. Not only does such practice impede c l i e n t s ' return to health but also creates feelings of anger and helplessness on the part of c l i e n t s . The gap between professionals and c l i e n t s is not becoming smaller. Unfortunately, the discrepancy pe r s i s t s and i s perceived to be a major concern by c l i e n t s . Because the focus of the c l i e n t s was on concrete behaviors and commonsense approaches, the study's findings have implications for nursing practice, education and research. Implications for Nursing Practice Understanding c l i e n t s ' viewpoints about their i l l n e s s experience provides d i r e c t i o n for e f f e c t i v e nursing practice. Care can be made more relevant to how c l i e n t s understand i l l n e s s . In th i s way, the management of i l l n e s s can more e f f e c t i v e l y c a p i t a l i z e on c l i e n t s ' i n t r i n s i c coping resources. With e f f e c t i v e care, c l i e n t s can be better prepared to understand and manage their i l l n e s s in ways that make sense to them. They can better adhere to medical regimes i f they understand them on their own terms. Because focusing on lay explanatory models c a p i t a l i z e s on the unique meaning system of c l i e n t s , care can become more e f f e c t i v e . Nursing time and energy cannot be wasted solely on professional explanatory models since c l i e n t s do not necessarily 199 rely on these when making decisions about health care. If care is made more ef f e c t i v e by incorporating popular explanatory models into nursing care plans, interventions can also become more co s t - e f f e c t i v e . Clients' accounts c l e a r l y demonstrate the v a r i a b i l i t y in how they perceive i l l n e s s and concerns. Because this v a r i a b i l i t y is so predominant, nurses cannot assume that the i l l n e s s experience of recovery from CABG is a generalizable one. Nursing care must be individualized to deal with the uniqueness of the experience for each c l i e n t . The findings of this study provide di r e c t i o n in using the nursing process to recognize this indiv i d u a l i ty. Assessment How c l i e n t s perceive their symptoms and i l l n e s s must be the star t i n g point for nursing care. Only through reaching an understanding of how c l i e n t s interpret their i l l n e s s can nurses e f f e c t i v e l y communicate. Ascertaining why c l i e n t s attach significance to certain perceptions would help maintain communication between nurses and c l i e n t s . Their concerns must not be dismissed, but understood. Nurses must not assume that c l i e n t s perceive their symptoms and i l l n e s s as professionals do. Because professional and popular explanatory models are so d i f f e r e n t , nurses need to consciously reduce the discrepancy between c l i e n t s and professionals. Negotiation must occur between popular and professional explanatory models. 200 Determining how c l i e n t s perceive th e i r i l l n e s s , then, must be an important facet of care. Planning and Implementation Recognizing and accepting c l i e n t s ' viewpoints e n t a i l s dealing with both popular and professional explanatory models. In order to provide in d i v i d u a l i z e d , s k i l l e d care, nurses must negotiate the two d i s t i n c t health care sectors. If c l i e n t s perceive that nurses are trying to understand their viewpoint, trust can be engendered. Acknowledging their views can also help c l i e n t s maintain control and dignity. Treating c l i e n t s as people, not as objects or passive recepients of care should be a p r i o r i t y in nursing practice. Nurses must demonstrate their accountability to their c l i e n t s by following through on their interventions. Clients were very aware of "busy-ness" or other factors that interfered with their care. Nurses must be aware that c l i e n t s are not "good patients" but people who have needs and require responsible care. Informing c l i e n t s of how they are progressing should be a routine function. Since c l i e n t s coped with their i l l n e s s by id e n t i f y i n g benchmarks and seeing progress, feedback from nurses can be valuable. This can encourage c l i e n t s by helping them attach p o s i t i v e meaning to events l i k e the removal of monitoring equipment. Comparing their expectations regarding their i l l n e s s with their actual progress can help them cope. Hopefulness 201 regarding their progress should also be fostered as t h i s was perceived to be a valuable coping strategy. The a f f e c t i v e component of t h i s i l l n e s s must be considered a p r i o r i t y in nursing care. The fear, denial and hopelessness that professionals tend to accept as "normal" can be very real and threatening to the c l i e n t . E s p e c i a l l y during anginal episodes, the c l i e n t ' s emotional status must be assessed and managed. Nurses must accept that c l i e n t s cope with i l l n e s s by becoming f e a r f u l or using denial. Clients must not be l a b e l l e d or stigmatized for coping or reacting in these ways. In patient education programs, professionals must develop content around what c l i e n t s perceive are concerns. The focus should be on concrete behaviors or problems, not the detailed cause-effect r a t i o n a l i t y of the medical model. Because c l i e n t s draw extensively on past experience to make sense of their i l l n e s s , this prior knowledge should be used in any teaching-learning interaction. Nurses must c a p i t a l i z e on how c l i e n t s make sense of their i l l n e s s and manage i t . If t h i s is done, c l i e n t s may be able to adhere to medical regimes because they "make sense" and have become more integrated into popular explanatory models. Teaching must be done in terms of c l i e n t behavior. Although c l i e n t s may need to understand basic pathophysiology, other aspects of the i l l n e s s should be presented in concrete ways. For example, information about n i t r o g l y c e r i n should be learned in terms of when to take the medication, how to take i t , what i t feels l i k e to take i t , the safety of the drug and i t s 202 necessity. Knowledge about the actual action of the drug may be superfluous i f the c l i e n t focuses on concrete aspects of the medication. Negotiation between popular and professional ways of understanding treatment must occur i f e f f e c t i v e care i s to re s u l t . Information alone, however, is not s u f f i c i e n t in patient education programs. Because i l l n e s s recognition and management involves cognitive as well as a f f e c t i v e functions, nurses must deal with c l i e n t s ' feelings. F a c i l i t a t i n g discussion of emotional responses must be an integral component of any program dealing with i l l n e s s management. Care of c l i e n t s undergoing coronary angiography should warrant special attention as th i s marks a s i g n i f i c a n t benchmark in the i l l n e s s experience. Nurses must be aware that the angiogram can represent a new lease on l i f e or a death warrant to the c l i e n t . Hopelessness should be dealt with in the event that CABG is not recommended. Overall, the c l i e n t is vulnerable during this period and requires support in decision-making and dealing with the implications of coronary disease. Pre-operative preparation of the c l i e n t undergoing CABG should i d e a l l y begin immediately after the c l i e n t decides to have surgery. During the waiting period prior to the CABG, c l i e n t s should have the opportunity to have their questions answered. Group sessions would be one method to discuss their concerns and reduce th e i r worry about the operation. Since the waiting period was a concern for a l l c l i e n t s , nurses must consider ways to a s s i s t c l i e n t s cope with t h i s phase of their 203 i l l n e s s . C lients should be honestly informed about events a f f e c t i n g their care. Especially in r e l a t i o n to cancelling surgery, c l i e n t s need information in order to cope. Otherwise, misconceptions can arise and the c l i e n t may become needlessly concerned. Trust can be maintained i f honesty e x i s t s . Since trust was so important a coping strategy, nurses must s t r i v e to maintain t h i s . In c r i t i c a l care areas, nurses should be aware that c l i e n t s hear and understand more than they appear to. The humanity of the c l i e n t should not be ignored, but recognized. Their inherent dignity and worth must be respected regardless of their outward state. Blaming patients or using sarcasm is not acceptable nursing practice. Because c l i e n t s are so helpless when they are i l l , nurses must focus on maintaining c l i e n t s ' control and power. Fl e x i b l e , supportive care, not "the routine" must be rea l i z e d . In their perceptions following CABG, c l i e n t s were acutely aware of the attitudes expressed by their nurses. As the central figures in their memories of th i s phase of their i l l n e s s , nurses should st r i v e to communicate a caring attitude to the c l i e n t s . In our quest for technical proficiency, nurses must not forget that c l i e n t s are vulnerable and sensitive to care-givers' attitudes. A posit i v e approach and acceptance of c l i e n t s are necessary to help them cope with i l l n e s s . Care cannot be e f f e c t i v e i f c l i e n t s are f e a r f u l or worried that the care they receive w i l l not be b e n e f i c i a l . 204 Preparation of the c l i e n t s for discharge should focus on r e a l i s t i c a l l y a n t i c i p a t i n g what problems may occur. The prolonged lack of appetite must be discussed with spouses or family. Gastro-intestinal problems must also be discussed with a plan developed to deal with these occurrences. For any concern, teaching programs must be developed in order to help c l i e n t s manage their recovery at home. Isolated knowledge i s of no value; c l i e n t s must be helped to make choices and manage their own health. Because the concerns of the discharge period were so variable, i t i s d i f f i c u l t to plan teaching to meet a l l the needs that may a r i s e . As adult learners, c l i e n t s automatically r e l i e d on past experience and focused on present problems. This may explain why discharge teaching often i s i n e f f e c t i v e . However, because c l i e n t s do experience concerns once home, i t would be helpful i f they could confer with professionals about dealing with their concerns. Ensuring that medical follow-up was available would be he l p f u l . Also b e n e f i c i a l would be home v i s i t s by nurses to identif y ongoing concerns of c l i e n t s . Evaluation Because c l i e n t s do vary in terms of their needs and a b i l i t i e s to manage their own i l l n e s s , care must be evaluated i n d i v i d u a l l y . The effectiveness of interventions must be measured in re l a t i o n to f a c i l i t a t i n g the c l i e n t to manage his or her own i l l n e s s . Only when the popular domain of the health 205 care system i s the focus can interventions become e f f e c t i v e . Thus, c l i e n t s ' a b i l i t i e s must not be evaluated solely on professional models. Recognition also must be given to the effectiveness of commonsense ways that c l i e n t s use to manage i l l n e s s . Implications for Nursing Education Curricula should be developed to help students appreciate that i l l n e s s i s a s o c i a l l y constructed phenomenon. Students should learn that gaps in understanding between c l i e n t s and professionals are inherent in the health care system. It should be stressed that understanding the c l i e n t ' s point of view i s central to nursing care. Without understanding and acceptance, c l i e n t s can be isolated and deprived of care to meet their needs. Because professionals have so many explanatory models about coronary artery disease, students must be encouraged to explore the meaning of the i l l n e s s from the c l i e n t ' s perspective. In t h i s way, pre-conceived notions which may be a barrier to patient-centered care can be reduced. Students should be made aware of the importance of interpersonal relations in nursing c l i e n t s with coronary artery disease. Even when c l i e n t s appear to be unconscious, students should r e a l i z e that nurses' attitudes are readily perceived by c l i e n t s . Communication and empathy must be prerequisites for an e f f e c t i v e patient-nurse re l a t i o n s h i p . 206 Implications for Nursing Research Although much research has been done on CABG and coronary disease, l i t t l e i s from the c l i e n t ' s perspective. Many f r u i t f u l areas of inquiry arise from exploring how c l i e n t s perceived their i l l n e s s . How do c l i e n t s make decisions about seeking medical care or managing their symptoms? What kinds of knowledge do c l i e n t s use when making sense of their symptoms? What is the rel a t i o n between the kind of analgesia used post-operatively and altered perceptions? What i s the nature of the pain experience post-operatively? How is compliance/adherance to medical regimes affected by popular explanatory models? Because this study c o l l e c t e d retrospective data about the i l l n e s s experience, further research is also needed regarding how c l i e n t s actually cope during the early parts of their i l l n e s s . A longitudinal study would shed l i g h t on the question, "Do c l i e n t s tend to minimize their i l l n e s s over time?" In conclusion, further study into the area of c l i e n t perceptions of i l l n e s s i s required in order to plan more ef f e c t i v e nursing care. That gaps in understanding between c l i e n t s and professionals exist cannot be questioned. Not only do c l i e n t s explain their i l l n e s s in very d i f f e r e n t terms than professionals do, but they also tend to rely on prior experience and commonsense ways to manage their i l l health. The importance of narrowing the discrepancy cannot be minimized. 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Pathways to the doctor—from person to patient. In D. Tuckett & J. M. Kaufert (Eds.), Basic  readings in medical sociology (pp. 122-134). London: Tavistock. r APPENDICES 220 APPENDIX A Client Introductory Letter Dear Mr./Mrs./Miss , My name i s Patrice Yamada. I am a student in the graduate program in nursing at the University of B r i t i s h Columbia. I am interested in learning about your concerns and experiences after your heart operation. I would greatly appreciate your co-operation in helping me learn about your i l l n e s s . If you agree to pa r t i c i p a t e , t h i s study w i l l involve the following: 1. My v i s i t i n g you in your home one or two times in order to interview you about your convalescence. 2. Tape recording our conversation which may last about one and one half hours per interview. Your name and any ide n t i f y i n g information w i l l not be used in the study or revealed. In order to ensure c o n f i d e n t i a l i t y , my notes w i l l be i d e n t i f i e d by a code only, and I, alone, w i l l know your i d e n t i t y . YOU ARE UNDER NO OBLIGATION TO PARTICIPATE IN THE STUDY. You may refuse to parti c i p a t e without any effect on your future care. If you agree to pa r t i c i p a t e , you may withdraw from the study or refuse to answer any questions AT ANY TIME without any effect on your care. The information discovered in the study may be used to publish findings. Your identity w i l l not be revealed in any published works. If you would l i k e more information regarding t h i s study, please inform your nurse. I w i l l then meet with you before you are ready to go home. At this time I w i l l explain the study in more d e t a i l and obtain your written consent to parti c i p a t e in the study. Thank-you for your co-operation. Yours t r u l y , Patrice Yamada 221 APPENDIX B Client Consent Form I understand that the purpose of this study i s to determine my concerns about recovering from heart surgery and how I perceive my i l l n e s s . I understand that t h i s study w i l l involve the following: 1. The investigator w i l l v i s i t me in my home one or two times in order to interview me about my convalescence. 2. Each interview w i l l l a s t about one and one half hours. 3. Our conversation w i l l be taped on an audio recorder. I understand that my name and any iden t i f y i n g information w i l l not be used in.the study or revealed. The investigator w i l l ensure c o n f i d e n t i a l i t y by identifying her notes by a code name. She, alone, w i l l know my true ide n t i t y . If the information discovered in the study i s published, my identit y w i l l , again, not be revealed. I understand that I AM UNDER NO OBLIGATION TO PARTICIPATE IN THE STUDY. I may refuse to part i c i p a t e without any effect on my future care. If I do agree to p a r t i c i p a t e , I may withdraw from the study or refuse to answer any questions AT ANY TIME without any effect on my care. I understand that i f I have any further questions regarding the study, I can contact the investigator. At the completion of the study, I understand that the investigator w i l l be re-contacting me regarding the results. I understand the nature of this study and I give my consent to p a r t i c i p a t e . I acknowledge receipt of a copy of this consent form. Date Signature Witnesss 222 APPENDIX C Sample Interview Questions 1 1. T e l l me about your i l l n e s s . 2. What do you think led up to your i l l n e s s ? 3. Why do you think i t started when i t did? 4. Can you explain to me what your i l l n e s s does to you? How does i t work? 5. How serious would you say your i l l n e s s is? 6. Do you think i t w i l l l a s t a long or short time? 7. How would you say you fee l about your i l l n e s s ? 8. What kind of treatment do you think you should receive? 9. 'Do you think the operation changed the way your body works? 10. What do you hope are the results of the operation? 11. T e l l me how you f e l t when you f i r s t came home from the hos p i t a l . 12. Would you say anything concerned you about your recovery? 13. What have you been doing to help yourself get better? 14. Has your i l l n e s s caused you any d i f f i c u l t i e s ? 1 Adapted from Kleinman, Eisenberg, and Good (1978, p. 256). 223 APPENDIX D Physician Consent Form Dear Dr. , My name i s Patrice Yamada. I am a student in the graduate program in nursing at the University of B r i t i s h Columbia. I would l i k e your co-operation in a study I am conducting of patients convalescing from coronary artery bypass grafting surgery. The purpose of the study is to examine the concerns of patients discharged from hospital following t h i s type of surgery. The study is not concerned with evaluating the quality of hospital care, but rather to determine the patients' perceptions of their i l l n e s s experience. Understanding how patients describe and explain their i l l n e s s can be b e n e f i c i a l for the following reasons: 1. Patients can increase their s a t i s f a c t i o n with hospital care because their concerns are known and can be d i r e c t l y addressed. 2. More e f f e c t i v e teaching programs can be planned which are geared to the patients' real concerns. 3. Patients can improve their compliance with treatment regimes because their concerns are incorporated into the plan of care. In order to determine the patients' perceptions of their i l l n e s s experience, data w i l l be gathered through an indepth interviewing technique. From 7 to 10 patients w i l l be selected to be interviewed based on their meeting the following c r i t e r i a : 1) having had coronary artery bypass grafting surgery during the current h o s p i t a l i z a t i o n , 2) able to speak and read English, 3) a l e r t and oriented to time, place , person and, 4) being 18 years of age or older. The investigator w i l l use a semi-structured interview format to e l i c i t the patients' viewpoint. This interviewing w i l l be done in the patients' homes within one week following discharge. The interview w i l l l a s t approximately one and one half hours with a maximum of two interviews to be done. A l l interviews w i l l be audiotape recorded. A l l patients who q u a l i f y for the study w i l l be informed that they are not obligated to p a r t i c i p a t e and that refusal to do so w i l l in no way aff e c t their future care. Also, i f they do agree to p a r t i c i p a t e , they w i l l be informed that they may 224 withdraw from the study or refuse to answer any questions at any time without any effect on their care (see enclosed patient Consent Form). Only the investigator w i l l know the identity of the participant. The results of the study w i l l be reported in a thesis. Upon completion of the project, a copy of the thesis w i l l be available from the Cardiac Teaching Unit, X. Hospital. If you have any questions regarding t h i s study, please contact me. This study has been approved by the Et h i c a l Review Committee of the University of B r i t i s h Columbia and the Research Co-ordinating Committee of X. Hospital. Thank-you for your co-operation. Yours t r u l y , Patrice Yamada I agree to have the patients under my care p a r t i c i p a t e in t h i s study i f they are w i l l i n g . Date Signature 

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