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How do women describe the conventional treatment experience for anorexia nervosa? : a thematic descriptive… MacDonald-Emes, Janet Barbara 1996

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HOW DO WOMEN DESCRIBE THE CONVENTIONAL TREATMENT EXPERIENCE FOR ANOREXIA NERVOSA? A THEMATIC DESCRIPTIVE STUDY by JANET BARBARA MACDONALD-EMES B.S.N., University of Alberta, 1992 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l , 1996 © Janet Barbara MacDonald-Emes, 1996 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) ABSTRACT This study was undertaken i n order to describe and explore the conventional treatment experiences that women with Anorexia Nervosa (AN) undergo from the perspective of the women themselves. The impetus for the study grew from the l i t e r a t u r e i n d i c a t i n g that there i s a strong consumer c r i t i q u e of various aspects of conventional treatment approaches. Furthermore, conventional treatments have been almost e n t i r e l y guided by c l i n i c a l opinion rather than by research; many approaches are having li m i t e d success rates i n terms of long-term outcome. In addition, more nurses are caring for women with AN i n a l l settings and yet the nursing care i s orchestrated i n accordance with i n e f f e c t i v e approaches. F i n a l l y , the perspectives of p r a c t i t i o n e r s are often d i f f e r e n t than those of the consumers of health care services. Thus, more pr a c t i t i o n e r s are understanding the importance of'not only giving a voice to consumers, but ac t u a l l y conducting research concerning the views of consumers i n order to improve e f f i c a c y of treatments. Freed from the confines of an orthodox methodology, the thematic descriptive approach to guide t h i s study was composed. Five informants were chosen by vi r t u e of t h e i r a b i l i t y to convey t h e i r treatment experience for AN. Data c o l l e c t i o n and data analysis was carr i e d out simultaneously ii using an approach adapted from F i e l d and Morse (1985) and Giorgi (1985). The findings from t h i s study revealed that the q u a l i t y of the treatment experience was contingent upon: the q u a l i t i e s possessed by the pr a c t i t i o n e r s ; the nature of the set t i n g ; the degree to which informants experienced d i f f i c u l t y i n accessing programs and pr a c t i t i o n e r s ; and the predominance of a qua n t i f i a b l e focus on treatment that ascertains recovery i n terms of weight gain; a l l at the expense of long-term psychosocial well-being. The conclusions drawn from the findings are tenfold: 1) Conventional treatments may not meet the needs of consumers; 2) Many treatments for AN tend to r e f l e c t a medical modality; 3) Conventional treatments include some elements that may be counterproductive to recovery from AN; 4) Conventional treatments may exclude some elements that f a c i l i t a t e recovery; 5) The need to esta b l i s h recovery within a quan t i f i a b l e context may be contingent upon the severity of the AN; 6) Treatment philosophies may be inconsistent and poorly coordinated within and between settings; 7) Women with AN believe that the behaviors and ideologies p r a c t i t i o n e r s possess are c r i t i c a l to the success of treatment programs; 8) This study r e i t e r a t e s claims made by consumers and advocates of AN that conventional treatments alone are i n e f f e c t i v e ; 9) The demand for conventional treatments p e r s i s t possibly iii because of the eternal hope they symbolize; and 10) The views of r e c i p i e n t s for care of AN are invaluable i n understanding the implications of conventional treatments. These conclusion have far-reaching implications for nursing research, practice, education, and s o c i a l p o l i c y . iv TABLE OF CONTENTS ABSTRACT i i TABLE OF CONTENTS v ACKNOWLEDGMENTS v i i i CHAPTER ONE: INTRODUCTION 1 Background to the Problem and Purpose 1 The Biomedical Perspective 7 i The Psychological Perspective '. 9 The Sociocultural Perspective 11 Conventional Treatment Approaches... 14 Statement of the Problem and Purpose. 17 D e f i n i t i o n of Terms 18 Introduction to This Study's Methodology 19 Assumptions 21 Researcher's Perceptions 22 Significance 24 Summary. . . 24 CHAPTER TWO: REVIEW OF THE LITERATURE 26 Introduction .. 26 Conventional Treatment Approaches ~. 27 Medical Treatment 29 Psychotherapy 34 Behavioral Therapy 37 Unconventional Treatment Approaches 41 Private C l i n i c s 42 Experiential Therapies 47 Support Groups and Self-Help Groups 50 Nursing Approaches: Ideological Perspectives and Practice 54 Nursing Approaches: Ideological Perspectives 54 Nursing Approaches: Practice... 61 Viewpoints of Consumers 72 Summary. . 79 v CHAPTER THREE: RESEARCH METHODOLOGY 81 Introduction 81 \ Approach Discerned From the Research Question ... 81 Method Sl u r r i n g versus Methodological Orthodoxy 85 Informant Selection 89 Char a c t e r i s t i c s of Informants 90 Data C o l l e c t i o n Techniques 92 Data Analysis 95 Limitations... 97 Context Within Which Interviews Were Conducted 9 9 Rigor 100 E t h i c a l Considerations 102 Summary 104 CHAPTER FOUR: PRESENTATION OF THE FINDINGS 106 Introduction 106 Conditions That Permeate The Treatment Experience 108 A c c e s s i b i l i t y of Programs and Prac t i t i o n e r s 109 Quantification of Recovery 113 Medicalization of The Condition 118 Nature of The Setting v.... 123 Hospital-based Treatment.... 124 Emergency Wards 124 Eating-Disorder Wards 127 Medical and General Psychiatric Wards, and Pro v i n c i a l Psychiatric Institutions 134 Between Hospital and Community Treatment Programs. 140 Community-based Treatment 142 Qua l i t i e s of Practitioners 150 Expert Pr a c t i t i o n e r s ,. 151 Knowledge 152 C l i n i c a l Experience 154 Empathy 157 Orthodox Technicians 159 Af f e c t i v e Indifference 159 Authoritarian Approach 162 Summary 164 vi CHAPTER FIVE: DISCUSSION OF FINDINGS 167 Introduction 167 Obstacles To Recovery . 168 Gaps In The System 169 Discontinuity of Services 169 Limited Resources 174 People Within The System 179 Ideological Perspectives of P r a c t i t i o n e r s . . . 179 Behaviors of Practitioners 183 Medicalization of a Social/Psychological Phenomenon 189 The Medical Modality 190 Exclusionary Aspects of Treatment 198 The Concerns of Consumers.... 209 Understanding The Demand For Conventional Treatment... 214 Summary ,.. . . 217 CHAPTER SIX: SUMMARY, CONCLUSIONS AND IMPLICATIONS 219 Summary 219 Conclusions 224 Implications.. 225 Nursing Research 225 Nursing Practice 229 Nursing Education 237 Social P o l i c y 239 A F i n a l Thought 242 REFERENCES 244 APPENDIX A: DSM IV CRITERIA: 307.1 ANOREXIA NERVOSA... 267 APPENDIX B: OVER-EATERS ANONYMOUS (12 STEPS) 268 APPENDIX C: INFORMANT INFORMATION LETTER 269 APPENDIX D: INFORMANT CONSENT FORM '.. 271 APPENDIX E: INTERVIEW GUIDE 273 vii ACKNOWLEDGMENTS I would l i k e to acknowledge a l l of the women who have thus far suffered and died from an eating disorder. To those who continue to courageously ba t t l e t h e i r condition, remember to never give up as there i s always hope. Thank you to the f i v e informants i n t h i s study whose steadfastness, courage and tenacity I hold i n deepest admiration. Thank you to one informant's mother who allowed, me into her world. Thank you to my thesis committee members, Dr. V. Hayes, Professor E. Carty, and e s p e c i a l l y Dr. S. Thorne. Thank you S a l l y for being an extraordinary nurse, educator, academic, scholar, and person. Without you, t h i s would not have existed. My professional and academic journey has been made a l l the more gentle because of Jan Walker (manager of 6 West, B r i t i s h Columbia Cancer Agency) who exemplifies .the professional nurse. Thank you to the nurses on 6 West for grounding me i n r e a l i t y . Without friendships how do we t r u l y grow? Paula and Micheal Dowey, thank you for role modeling your passion and zest for l i f e . P a t r i c i a Bailey, thank you for a c t i v e l y seeking out truth, j u s t i c e and the goddesses. Deborah Pa r t i c a and Ken Armer, thank you for the profound laughs. Andrea Martinello, thank you for your unconditional acceptance. C h r i s t i n e Kordyban, thank you for being a stable rock i n view of my ever changing world. A v r i l H a l l , thank you for your prayers. Daria Brown, thank you for always taking an i n t e r e s t . Because of the camaraderie of the students at UBC, the out-of-classroom discourse made the whole process worthwhile. To Josephine Fachet, my tenacious grandmother, whose pragmatism was always l i g h t years ahead of anyone else. To Donald MacDonald, my philosophical father, who sets the wonderful example of a l i f e f i l l e d with optimism and beauty. To Helen Eva MacDonald, my devoted mother, the most u n s e l f i s h and giving person that I know. To my lover,*Craig Edward Ernes who endured many hardships so that I could f u l f i l l my dream. S t i l l , he forever encourages me to f u l f i l l more of my dreams. viii 1 CHAPTER ONE: INTRODUCTION Background to the Problem and Purpose Depending on which h i s t o r i a n you c i t e , Anorexia Nervosa (AN) was f i r s t described i n 1689 by S i r Richard Morton (Nottingham & Emerson, 1991) and l a t e r i n 1868 by Ernest Lasegue or i n 1873 by William Withey Gull (Vandereycken & Van Deth, 1989) . A l l detailed a wasting condition i n a person that they attributed to psychological s e l f - s t a r v a t i o n . Today, AN i s reputed to have the highest mortality rate of any psy c h i a t r i c i l l n e s s (Freeman & Newton, 1992). Suicide and complications of the i l l n e s s are the two most common causes of death i n AN (Crisp, Callender, Halek & Hsu, 1992; Walsh, 1995). The Diagnostic and S t a t i s t i c a l Manual of Mental Disorders, DSM IV (1994) reports that between 90-95% of those with Anorexia Nervosa are women*. Indeed, current estimates indicate that 1 i n 100 females exhibit signs and symptoms consistent with t h i s condition (Love & Seaton, 1991). The age of onset ranges from adolescence to the early t h i r t i e s . The DSM IV estimates as many as 18% of people with AN w i l l die of i t . Theander's (1983) follow-up study of th i r t y - t h r e e years •Because the majority of individuals with AN are women, the feminine pronoun w i l l be used throughout t h i s t h e s i s . 2 indicates that mortality i s i n excess of twenty-two percent even with extensive treatment. Bruch (1978) contends that a t h i r d of individuals diagnosed with AN w i l l recover, a t h i r d w i l l die, and a t h i r d w i l l s u f f e r with chronic AN for the duration of t h e i r l i v e s . Most experts agree that AN i s a complex, m u l t i f a c t o r a l condition i n which the prognosis i s dismal (Freeman & Newton, 1992; Gabereau, 1994; Love & Seaton, 1991; Nottingham & Emerson, 1991). Interplay among i n d i v i d u a l , family, and s o c i o c u l t u r a l factors i s one possible theory of causation (Connolly & Corbett-Dick, 1990). Therefore, a number of d i f f e r e n t i d e o l o g i c a l perspectives have been established that provide a framework for conventional treatment approaches including the biomedical, psychological, and s o c i o c u l t u r a l perspectives. Conventional treatment approaches based on the above perspectives include medical and pharmacological treatments, behavioral therapy, and psychotherapy. However, Geary contends that "no model [perspective] has been so e f f e c t i v e that i t has achieved preeminence as the basis for t r e a t i n g eating disorders" (1988, p. 42). Further, a number of studies indicate that the relapse rate i s high for women af t e r they have received extensive treatments using these approaches (Herzog, Rathner & Vandereycken, 1992). F i n a l l y , there i s a strong consumer c r i t i q u e of not only the 3 ineffectiveness of some aspects of conventional treatment approaches, but the painful experiences that people have with these approaches (Bordo, 1993; Dunbar, 1986; Lawrence, 1984; MacLeod, 1981). Thus, the f a i l u r e to grasp the women's perspective of the treatment experience for AN has resulted in inadequate nursing care of women with AN. It has also resulted i n the design and implementation of treatments that often r e f l e c t the views of the health care professionals, rather than that of the women who experience the treatments. Nurses play an int e g r a l role i n the abyss of conventional treatment approaches because they spend more time with the ind i v i d u a l than any other d i s c i p l i n e . S t i l l , there are no discr e t e nursing frameworks to provide d i r e c t i o n for care of persons with AN. Further, nursing care i s often orchestrated using conventional treatment approaches based on i d e o l o g i c a l perspectives devised by other d i s c i p l i n e s . In addition, research to evaluate the effectiveness of nursing care i s nonexistent (Glatter Nusbaum & Drever, 1990). The intent of th i s study then i s to contribute a body of knowledge that w i l l a s s i s t nurses to understand the nature of the conventional treatment experience of women with AN, i n order to intervene more e f f e c t i v e l y with women who have AN, and therefore, enhance the qu a l i t y of nursing care that women with AN receive. 4 The DSM IV documents four c r i t e r i a for diagnosing AN (Appendix A). The esse n t i a l features of AN are: r e f u s a l to maintain minimal normal body weight for age and height; intense fear of becoming fat and gaining weight; a d i s t o r t e d body image; and amenorrhea. Garner and Fairburn (1988) emphasize that the exact c l a s s i f i c a t i o n of AN i s confusing and inconsistent. The DSM IV subcategorizes AN into the r e s t r i c t i n g type and the binge eating/purging type. "R e s t r i c t o r s " engage i n severe r e s t r i c t i o n of food consumption coupled with compulsive exercise. Conversely, "bingers" engage i n regular binge eating such as excessive consumption of food at one s i t t i n g , followed by purging behavior such as self-induced vomiting and/or laxative abuse. Some authors suggest that the prevalence of AN i n women i s increasing (Bordo, 1993; Brown, 1992; Riley, 1991) and encompasses a broader s o c i a l and c u l t u r a l base than hitherto thought (Boast, Coker & Wakeling, 1992). Giles-Banks (1992) suggests that heightened public and medical awareness leading to increased case findings and diagnosis may mean the increase i s apparent, not actual. In any case, more women are requiring treatment for AN. Whether women who are treated for AN are considered to have recovered depends larg e l y on the type and number of c r i t e r i a that are used (Herzog, Rathner & Vandereycken, 5 1992). Indeed, depending on the perspective of the health care member, any number of c r i t e r i a may be used to indicate recovery. A woman may be considered recovered i f she presents with a normal p s y c h i a t r i c status ^- i f , for example, she i s free from mood alter a t i o n s such as depression. Further, recovery may be considered i f a woman i s able to maintain normal weight control behavior — i f , for example, she i s free from obsessive compulsive behaviors such as rigorous exercise or binging and purging. Or, recovery may be considered i f a woman menstruates regularly and i s able to maintain an average weight for her, age and height. In many cases, the scholarly l i t e r a t u r e describes recovery from AN i n terms of maintenance of average weight for age and height and presence of regular menstruation (Crisp, Callender, Halek & Hsu, 1992). Vandereycken and Meermann (1992) acknowledge that considering the outcome of AN i n terms of eating symptoms and menarche i s obviously too limited because the ps y c h i a t r i c status, and behavioral problems of the ind i v i d u a l may not be r e c t i f i e d . Thus, the c r i t e r i a for establishing recovery from AN are ambiguous. Any or a l l of the aforementioned c r i t e r i a can be considered evidence of recovery. The health care p r a c t i t i o n e r s (professionals, c l i n i c i a n s , care workers) often evaluate the effectiveness of the ex i s t i n g conventional treatment approaches based on such ambiguous c r i t e r i a . To th i s end, using such c r i t e r i a to indicate recovery i s problematic because the indi v i d u a l i s often e s s e n t i a l l y untreated a f t e r spending several months i n a f a c i l i t y . For example, Solanto, Jacobson, Hellers, Goldon and Hertz (1994) evaluated the e f f i c a c y of t h e i r treatment approach based s o l e l y on the amount of weight that t h e i r patients gained while i n the ho s p i t a l . Further, Windauer, Lennerts, Talbot, Touyz & Beumont (1993) demonstrated that many women who are discharged from the hospital are weight-recovered but continue to exhibit a wide range of behavioral and psychopathological features associated with AN. Most conventional treatment approaches, both i n the hospital and community se t t i n g , are based on non-specific evaluative c r i t e r i a . Further, they are preserved because no other c r i t e r i a are available to evaluate effectiveness. Yet, most pr a c t i t i o n e r s caring for women with AN acknowledge that complete recovery i s infrequently achieved (Freeman & Newton 1992) . Windauer and colleagues concluded that p r a c t i t i o n e r s caring for women with AN must rethink the c r i t e r i a used to es t a b l i s h recovery i f complete recovery i s to be ascertained Vandereycken and Meermann (1992) state "what c l i n i c i a n s [ p r a c t i t i o n e r s ] mean by normal, cured, or recovered i s often only c l e a r to them and represents the conclusion of an • 7 impressionistic appraisal" (p. 8). Thus, the etiology, treatment, and recovery of AN are open to in t e r p r e t a t i o n . The complex nature of AN does not suggest a sing l e , simple etiology. S t i l l , various i d e o l o g i c a l perspectives of AN have been generated by a variety of d i s c i p l i n e s i n an attempt to explain the etiology of AN and provide a framework for treatment. Among the competing perspectives for AN are the biomedical, psychological, and so c i o c u l t u r a l perspectives. The Biomedical Perspective Some advocates of the biomedical perspective subscribe to the view that AN i s generated by an organic cause c a l l e d "somatogenesis" (Brumberg, 1988). Medical p r a c t i t i o n e r s generally approach AN from the biomedical perspective. They seek to locate the cause of AN i n abnormalities that have biochemical influences on weight control and eating behaviors. S p e c i f i c abnormalities include presence of endogenous opiates that may contribute to the denial of hunger i n women with AN (Kaplan, Sadock & Grebb, 1994); neurological dysfunction within the hypothalamus (Johnson, Stuckey & M i t c h e l l , 1985; M i t c h e l l , 1985); and endocrinological abnormalities such as i r r e g u l a r output of vasopressin (Freeman & Newton, 1992). \ 8 The physiological changes associated with AN can be l i f e -threatening. Physiological findings can include hematological abnormalities, reproductive problems, cachexia, renal complications, g a s t r o i n t e s t i n a l problems, metabolic and cardiopulmonary complications, dental c a r i e s , endocrine abnormalities, f l u i d and e l e c t r o l y t e imbalance, and neurological problems (Glatter Nusbaum & Drever, 1990; Kaplan, Sadock & Grebb, 1994; Thurstin, 1992). Since a woman with AN can cause l i f e threatening damage to her body, attention to the biomedical aspects of AN i s warranted. Most of the physiological abnormalities i n women with AN also occur i n starving i n d i v i d u a l s . This i s documented by Keys, Brozek, Henschel, Mickelsen and Taylor (1950) who, i n a c l a s s i c Minnesota experiment, studied the eff e c t s of starvation on a group of young, healthy college men who volunteered to undergo starvation for a period of weeks. Keys and colleagues found that the men continued to manifest t y p i c a l symptoms of AN even a f t e r the feeding regime was reintroduced. Typical symptoms associated with both AN and starvation are food preoccupation, eating r i t u a l s , binges, s o c i a l withdrawal, l a b i l i t y and depression of mood, poor concentration, i r r i t a b i l i t y , s t e a l i n g food, loss of energy, sleep disturbance, and obsessional symptoms (Freeman & Newton, 1992). The sign i f i c a n c e of t h i s study i s that i t 9 suggests that the t y p i c a l symptoms exhibited by women with AN are l i k e l y to be secondary to the starvation process ( G i l e s -Banks, 1992) . The b i o l o g i c a l perspective f a i l s to address the psychological and so c i o c u l t u r a l aspects of AN. It also f a i l s to address why more women than men are affected with AN (Brumberg, 1988). Feminist c r i t i c i s m of t h i s perspective suggests that some medical p r a c t i t i o n e r s seek to pathologize and medicalize AN, rather than address the psychological and s o c i e t a l factors that may contribute to i t (Brown, 1992). Moreover, Brumberg asserts that i f the case for somatogenesis (an organic cause) was conclusive, AN would be an involuntary disease, i n h e r i t a b l e , and best treated by medical techniques. Concurrently, p r a c t i t i o n e r s would be free to disregard the psychological and s o c i o l o g i c a l e f f e c t s that may contribute to AN. The Psychological Perspective Many p r a c t i t i o n e r s caring for women with AN generally approach AN from a psychological perspective. Psychological perspectives of AN are derived from three psychological schools of thought: psychoanalytic theory, family-systems theory, and learning theory. The psychoanalytic perspective r e f l e c t s much of the psychoanalytic theory as presented by Freud. According to t h i s perspective, AN i s an expression of 10 a repressive state that young women maintain i n order to avoid maturational problems such as sexual development and autonomy (Furnham & Hume-Wright, 1992; Giles-Banks, 1992). Proponents of the psychoanalytic movement believe that the symptoms of AN w i l l resolve when women receive therapy that f a c i l i t a t e s insight into t h e i r food r e f u s a l (Orbach, 1986) and focuses on fundamental aspects of t h e i r s e l f - i d e n t i t y rather than on t h e i r weight alone (Bruch, 1988). The family-system perspective derived from family-systems theory focuses on the "anorectic family" (Crisp , 1980). This perspective maintains that c e r t a i n family environments foster passive defiance making i t d i f f i c u l t for ce r t a i n members to assert t h e i r i n d i v i d u a l i t y . The p r o f i l e of a "anorectic family" i s one i n which the mother i s strong-willed and domineering while the father may be meek, withdrawn, aloof, and/or a l c o h o l i c . Minuchin, Rosmar, and Baker (1982) i d e n t i f i e d four c h a r a c t e r i s t i c s often present i n the anorexic/bulimic family system. They are enmeshment, overprotectiveness, r i g i d i t y , and lack of c o n f l i c t r e s o l u t i o n . The family-system perspective supports the notion that family norms and behaviors are related to the development and maintenance of AN (Furnham & Hume-Wright, 1992) . 11 Proponents of perspectives adapted from learning theory believe that symptoms or behaviors of AN are learned and can be unlearned through a process of cognitive and behavioral change. S p e c i f i c a l l y , c o g n i t i v e - i n t e r a c t i o n i s t perspectives focus on helping individuals change t h e i r understanding of s i g n i f i c a n t situations and problems while behaviorist perspectives focus on changing observable detrimental behaviors of individuals i n s i g n i f i c a n t ways (Bigge & Shermis, 1992). The process of cognitive and behavioral change i s often achieved through a technique referred to as behavioral modification, more commonly known as behavioral therapy (Dinkmeyer & Muro, 1979; Geary, 1988; Riley, 1991). Generally, the psychoanalytic, family-systems and cognitive- behaviorist perspectives by themselves are i n s u f f i c i e n t . That i s , they often f a i l to account for the so c i o c u l t u r a l influences that bombard women with messages equating being t h i n to beauty, success, wealth, and happiness (Wolf, 1990). Moreover, they often f a i l to consider and situate the woman, her behavior, and/or her family within the context of her so c i o c u l t u r a l setting (Bordo, 1993). The S o c i o c u l t u r a l Perspective While s o c i o c u l t u r a l perspectives do not f u l l y explain the etiology of AN, they do implicate c u l t u r a l d i c t a aimed primarily at women as the contributing factor to AN (G i l e s -12 Banks, 1992). There i s a plethora of l i t e r a t u r e to indicate that women i n western society define t h e i r beauty and s e l f -worth by t h e i r weight (Bordo, 1993; Brown, 1992; Brumberg 1988; Orbach, 1986; Wolf, 1990). Many scholars who have a feminist perspective attempt to explain AN as a consequence of a misogynistic culture that b e l i t t l e s women by devaluing female experiences, o b j e c t i f y i n g women's bodies, and not acknowledging women's achievements (Giles-Banks). In the Beauty Myth, Naomi Wolf writes, "A culture f i x a t i o n on female thinness i s not an obsession about female beauty but an obsession about female obedience" (p. 187). Why do women often go hungry? S. Jones, Doheny, P. Jones, O'Bryan and Bradley (1986) and Brown (1992) suggest that stages of AN are extensions of normal eating patterns for women, that for many women normal means a pattern of constantly d i e t i n g i n order to f e e l good, and that good means acceptable i n society. However, AN existed long before there was mass c u l t u r a l preoccupation with d i e t i n g and a slim body image. Historians, such as Brumberg (1988), emphasize the d i s t i n c t i v e s o c i a l and c u l t u r a l contexts i n which young women have h i s t o r i c a l l y chosen to refuse food. In Fasting G i r l s , Brumberg writes the following: Iri essence, t h i s book charts the t r a n s i t i o n from sainthood to patienthood, a process that historians describe with two f a m i l i a r words, s e c u l a r i z a t i o n and 13 medicalization...Using cases drawn from the sixteenth through nineteen centuries, I show how the understanding of food-refusing behavior evolved i n response to new developments i n r e l i g i o n and medicine. By the nineteenth century a general decline i n f a i t h and the r i s e of s c i e n t i f i c authority had, for the most part, transformed r e f u s a l of food from a r e l i g i o u s act into a pathological state, (p. 5) Some anthropologists assert that feminists assume AN i s a contemporary condition, rooted i n circumstances of modern society. Giles-Banks (1992), one of these anthropologists, counters t h i s perspective by documenting the connection between food r e f u s a l and Ch r i s t i a n asceticism for women between the twelfth and the f i f t e e n centuries. There i s a growing body of l i t e r a t u r e suggesting that the so c i o c u l t u r a l d i c t a of contemporary society, such as the media's presentation of an ideal body image, are not a s i g n i f i c a n t cause of AN. In the l i t e r a t u r e are examples of women with AN who have been born b l i n d and state that they have a r e l e n t l e s s desire for thinness because they have an inward loathing for themselves — not because they have been influenced and pressured by so c i o c u l t u r a l aspects such as t e l e v i s i o n commercials and beauty magazines. In describing t h e i r AN, these women never express an outward disgust for t h e i r body s i z e , shape, or weight. Instead, they r e f e r to an inner self-hatred (McFarlane, 1989; Sharp, 1993; Vandereycken, 1986). As well, the so c i o c u l t u r a l perspective 14 does not explain why most women do not develop the condition even though they have been exposed to the same c u l t u r a l environment as those women that do develop AN. Hence, the pressures and circumstances of contemporary l i f e that women face on a d a i l y basis may be only one p i v o t a l factor i n explaining the etiology of AN. Conventional Treatment Approaches The conventional treatment approaches for AN are well known to both lay people and experts i n the f i e l d . However, the effectiveness of the treatment approaches are often disputed. A t y p i c a l conventional treatment approach described i n the lay and scholarly l i t e r a t u r e i s i l l u s t r a t e d i n the following vignette: A woman i s hospitalized with AN. She i s labeled as having a mental i l l n e s s ; therefore, she i s admitted to a psyc h i a t r i c unit. Probably, a behavioral-therapy approach w i l l describe the most common type of care she w i l l receive concurrently with medical interventions (Solanto, Jacobson, Hellers & Golden, 1994; Touyz, Beumont, Glaum, P h i l l i p s & Cowie, 1984). This approach i s based on a system of rewards and punishments (Dinkmeyer & Muro, 1979). In addition, she may receive d a i l y n u t r i t i o n a l counseling, psychotherapy, and/or occupational therapy depending on the f a c i l i t y . 15 Her care might e n t a i l being i n v o l u n t a r i l y c e r t i f i e d to ensure that she rapidl y regains weight. The woman may be aggressively persuaded to consume high c a l o r i c f l u i d supplements and/or to receive forced naso-gastric tube feedings to expedite the weight gain process. The woman may be heavily sedated to ensure that she does not burn c a l o r i e s and that she i s able to tolerate the tube feedings. In addition, she may be prescribed and administered antidepressants, a n x i o l y t i c s and antipsychotics for r e l a t e d mood disorders. She w i l l be weighed at least d a i l y , and she may have d a i l y skin f o l d measurements to measure the percentage of body fat gained during treatment. In addition, her v i s i t o r s may be r e s t r i c t e d . The woman may be observed during every meal that she eats. Further, she may be segregated, i s o l a t e d , or secluded at mealtime, or forced to eat alone i n her room. Concurrently, she may not be permitted, to speak during the meal, or she may be r e s t r i c t e d i n the type of conversations that she has during a meal. F i n a l l y , at ce r t a i n times she may be denied privacy while going to the bathroom to ensure that she does not purge her meal. If she begins to gain weight, she w i l l regain p r i v i l e g e s she l o s t before gaining weight. Approximately three weeks to three months l a t e r , she w i l l be discharged upon meeting the target weight gain. She may then be referred to a new p s y c h i a t r i s t 16 or psychologist for weekly follow-up v i s i t s and/or she may be enrolled i n community-based treatment programs. Unfortunately, she w i l l i n a l l l i k e l i h o o d be readmitted to the hospital again for severe weight loss. Relapse i s common for women with AN. Hence, the vicious cycle of weight loss and weight gain perpetuates i t s e l f . This vignette represents r e a l i t y for many women receiving conventional treatments for AN i n eating disorder c l i n i c s worldwide (Dunbar, 1986; Gibson, 1983; Glatter Nusbaum & Drever, 1990; Kaplan, Sadock & Grebb, 1994; Lawrence, 1984; MacLeod, 1981; Solanto, Jacobson, Hellers, Golden, & Hertz, 1994). A plethora of l i t e r a t u r e exists about AN, some of which i s written by lay people. However, there i s a paucity of scholarly l i t e r a t u r e related to anthropological, h i s t o r i c a l , b i o l o g i c a l , psychological and s o c i o l o g i c a l perspectives exploring the etiology, incidence, prevalence, morbidity, treatment, and reoccurrence of AN (see Chapter Two). Scant nursing l i t e r a t u r e exists to guide nursing practice or to evaluate the outcomes of nursing care concerning women with AN (Glatter Nusbaum & Drever, 1990). Most of the nursing l i t e r a t u r e that i s written about women with AN i s anecdotal or based on descriptions of conventional treatment modalities that are derived from and implemented by other d i s c i p l i n e s , such as medicine and psychology. The irony i s that while 17 nurses look outside the d i s c i p l i n e of nursing to supplement inconclusive treatments for AN, i t i s they who spend more time with women who have AN than any other professional i n any other d i s c i p l i n e (Glatter Nusbaum & Drever). Statement of the Problem and Purpose As the incidence of AN increases annually, nurses are caring more and more often for women with AN i n the hosp i t a l and community set t i n g using conventional treatment approaches to provide d i r e c t i o n for patient care. Yet, many experts concede that conventional treatment approaches do not have favorable outcomes. Further, there i s a strong consumer c r i t i q u e of various aspects of conventional treatment approaches. Cle a r l y , nurses must begin to give consideration to the feelings, thoughts, ideas, and l i f e experiences thus far of sufferers i n order to make decisions about how ex i s t i n g conventional treatment approaches should or should not d i r e c t t h e i r care. Thus, the general problem which t h i s study addressed was the limited knowledge of women's perspectives on the treatment experience for AN. The purpose of t h i s study was to answer the general question: How do women describe the conventional treatment experience for AN? This was accomplished u t i l i z i n g a,thematic d e s c r i p t i v e approach. I believe that such an approach revealed insights about women's perspectives. The following 18 s p e c i f i c questions were used to help me accomplish the task of gaining insight and understanding into the aforementioned research question: 1. What i s the nature of the conventional treatment experience according to women with Anorexia Nervosa? 2. What aspects of conventional treatment have an e f f e c t on the experience of women with Anorexia Nervosa? 3. How does a woman with Anorexia Nervosa describe her response to the conventional treatment experience? 4. What i s l i f e l i k e for a woman with Anorexia Nervosa , before, during, and a f t e r conventional treatment? D e f i n i t i o n of Terms Anorexia Nervosa: for the purposes of t h i s study, I defined AN according to the diagnostic c r i t e r i a l i s t e d i n the DSM IV (Appendix A) . Woman With Anorexia Nervosa: a woman who has been diagnosed with Anorexia Nervosa and presently has Anorexia Nervosa. For the proposed study, the woman had to be over the age of eighteen and have received conventional treatment i n the hospital or community setting within the l a s t three years. Conventional Treatment: a p r o v i n c i a l l y approved program for the diagnosis of Anorexia Nervosa that primarily focuses on a combination of any two or a l l of the following 19 conventional treatments i n the hospital or community se t t i n g : medical therapy, psychotherapy, and behavioral therapy. Treatment Experience: feelings, thoughts, and reactions to receiving conventional treatment for Anorexia Nervosa and the ramifications of t h i s event i n the woman's l i f e . Introduction to This Study's Methodology Qua l i t a t i v e and quantitative approaches to research generate dichotomous views of s o c i a l r e a l i t y and ultimately produce d i f f e r e n t types of knowledge. While "quantitative methods tes t and re f i n e a growing body of knowledge" (Morse, 1994, p. 2) "a c r i t i c a l concern for o b j e c t i v i t y " i s retained by e x p e r i e n t i a l data c o l l e c t i o n and analysis (Tinkle & Beaton, 1983,p. 34). Conversely, q u a l i t a t i v e methods connote "strategies for c o l l e c t i n g images of r e a l i t y " (Morse, 1989, p. 1) based on the subjective experiences and/or behaviors of people. An approach within the q u a l i t a t i v e paradigm does not l i m i t the n a t u r a l i s t i c and authentic aspects of the phenomenon under study as would a quantitative study concentrating on objective data obtained from an a r t i f i c i a l s e t t i n g . Rather, i t f a c i l i t a t e s a thorough des c r i p t i o n of the phenomenon. Giles-Banks (1992) emphasizes the importance of learning about the subjective experiences of women with AN i n moving toward an understanding of t h e i r condition. A study of 20 women's treatment experience for AN from the perspective of the women who receive such treatment i s ess e n t i a l to understanding and evaluating the present type of care that women receive. My research question was based on the need to explore conventional treatment approaches for the purpose of examining the usefulness of current approaches i n the provision of empathetic and e f f e c t i v e nursing care. I believed that the most authentic approach to exploring conventional treatment approaches was to haye the women who had received such treatments for AN describe t h e i r experiences. This study was conducted then, using a thematic de s c r i p t i v e approach within the q u a l i t a t i v e paradigm, to describe the treatment experience that women with AN undergo. A thematic descriptive approach was characterized by subjective and inductive assumptions (see Chapter Three) and involved discerning themes from the data and t r a n s l a t i n g these themes into p r a c t i c a l implications for nursing pr a c t i c e on the basis of what the women who were interviewed for t h i s study recounted about t h e i r treatment experience. It i s my hope that the insight that i s gained from t h i s study w i l l enhance the general knowledge from which nurses can plan and provide q u a l i t y care for in d i v i d u a l women and expand the 21 profession's understanding of the general nature of the phenomenon. Assumptions In addition to those assumptions inherent i n the q u a l i t a t i v e research method, I presupposed the following assumptions i n t h i s study: 1) informants are women with AN who are able to enlighten people about the nature of the treatment experience for AN; 2) informants with AN are able to a r t i c u l a t e t h e i r conventional treatment experience; 3) informants who have received conventional treatments for AN have shared experiences; 4) informants are able to accurately express t h e i r perceptions of r e a l i t y about the conventional treatment experience; 5) a comprehensive understanding of the conventional treatment experience for AN can be ascertained through a thematic descriptive approach to inquiry; 6) a dearth of current knowledge about the phenomenon precludes the use of a th e o r e t i c a l basis such as a conceptual framework for the study (Brink & Wood, 1989); and 22 7) even though I acknowledge i n th i s study that the DSM IV d e f i n i t i o n i s problematic, the c r i t e r i a i n the DSM IV was the basis for establishing that a prospective informant has AN. The reason for t h i s decision was that most f a c i l i t i e s that provide conventional treatments use the DSM IV as a basis for diagnosis, admittance, and evaluation of the outcomes of t h e i r programs. Therefore, prospective informants would only receive conventional treatments i f they met the c r i t e r i a found i n the DSM IV. Researcher's Perceptions I believe that an a p r i o r i e x p lication of my perceptions of conventional treatments used to treat women with AN was necessary to reveal my biases. A number of factors i n my l i f e have influenced my perceptions of the conventional treatment approaches that women with AN experience. Therefore, the posing of the research question arose from my l i f e experiences as a female, a feminist, and a nurse. I was a f a t , female c h i l d . As a r e s u l t , I have always been conscious of my weight and what I consume. Although I never required treatment for AN, I now believe that my behaviors as an adolescent were i n d i c a t i v e of a preoccupation with weight gain. During my youth., my perception of my body image was inadvertently affected by t e l e v i s i o n commercials and magazines that equated success to thinness. I believe 23 that I was a product of a patr i a r c h a l society i n which I had to look t h i n i n order to succeed as a woman. As a feminist, I believe that the care and treatment of women with AN has been defined lar g e l y by the t r a d i t i o n a l androcentric perspective. To date, most research continues to embody only measurable, objective, anecdotal or de s c r i p t i v e data from the researcher's rather than the subject's perspective. I believe that the importance of researching and understanding women's experiences as resources of s o c i a l discourse must be recognized (Harding, 1987). Nursing research i s limi t e d i n the f i e l d of AN. The lay l i t e r a t u r e indicates that people want and need care that frees them from simply being diagnosed, weighed, fed, and taught various types of discourse. My ultimate goal i s to impart insight and understanding to nurses regarding the present treatment experience that women with AN undergo from the women's own perspective with the intent of improving patient care. As a nurse, I have witnessed that AN i s not just a woman's problem; i t i s a s o c i e t a l problem. A l l women I have come i n contact with express some degree of d i s s a t i s f a c t i o n with t h e i r weight or disturbance with t h e i r body image. Even patients who have cancer and are receiving chemotherapy drugs often indicate to me that they hope to "shed a few pounds during t h e i r chemotherapy treatment". In addition, I have 24 observed that nurses perpetuate conventional treatment approaches contributing to the d i s s a t i s f a c t i o n that women with AN express of t h e i r treatment experience. While my l i f e experiences as a female, a feminist, and a nurse have led me to study t h i s phenomenon, I attempted to bracket these influences throughout the research to the best of my a b i l i t y . Significance Nurses are involved with care for women with AN more than ever before. The approaches used by nurses are pr i m a r i l y borrowed or perpetuated by id e o l o g i c a l perspectives devised by other d i s c i p l i n e s . The significance of t h i s study, then, was i t s p o t e n t i a l to strengthen nurses' understanding of women's treatment experience with AN from the women's perspective, toward the purpose of enabling nurses to intervene i n a caring, h o l i s t i c , empathetic, h e l p f u l , and possibly l i f e - s a v i n g way. Summary The consumer and scholarly l i t e r a t u r e suggests that current treatments for AN are i n e f f e c t i v e . Given that nurses spend more time than any other d i s c i p l i n e caring for women with AN, i t i s not known whether t h e i r care i s contributing to a better or less than e f f e c t i v e treatment experience for women with AN. To f u l l y understand t h i s issue, I asked the research question: How do women describe the conventional 25 treatment experience for AN? In t h i s chapter, I have presented the problem and purpose of the study, and I have introduced the methodology. > In Chapter Two, I place the need for t h i s study within the context of the e x i s t i n g l i t e r a t u r e that I review. Chapter Three describes the thematic descriptive approach that provided d i r e c t i o n for t h i s study. A presentation of the findings i s found i n Chapter Four. In Chapters Five and Six, I discuss the findings and t h e i r implications for nursing practice, research, education and s o c i a l p o l i c y . 26 CHAPTER TWO: REVIEW OF THE LITERATURE Introduction Hospital and community f a c i l i t i e s using milieu-treatment approaches are the primary settings for treatment of women with AN. Treatment approaches encompass the entire spectrum of services. S p e c i f i c a l l y , individuals are treated using medical therapy, psychoanalysis, cognitive and behavioral therapy, group psychotherapy, family therapy and ex p e r i e n t i a l therapies. Psychopharmacologic treatment can also be included i n many of the above. Countless s e l f - h e l p organizations e x i s t , each with i t s own ideology and program of recovery. This plethora of treatment approaches suggests a lack of uniformity among treatments. While many approaches are i n use, longitudinal studies indicate that none have been e f f e c t i v e i n more than a moderate percentage of ind i v i d u a l s (Herzog, Rathner & Vandereycken, 1992). Experts concur that no e f f e c t i v e "cure" has been developed for AN (Volger, 1993) . In t h i s chapter, I review the l i t e r a t u r e pertinent to the stated purpose of t h i s study, that i s , to gain insight into the conventional treatment experience of women with AN with the intention of improving the nursing care that such women receive. I review the l i t e r a t u r e that describes both conventional treatment and unconventional treatment approaches used to treat AN. In addition, I present current nursing approaches and i l l u s t r a t e various nursing treatments 27 offered i n practice. F i n a l l y , I review the anecdotal l i t e r a t u r e that depicts the views that consumers hold of } t h e i r experiences with various treatment approaches. Conventional Treatment Approaches Surrounding the topic of AN are numerous theories of causation, case h i s t o r i e s , descriptions of symptomologies, and descriptions of conventional treatment approaches (Nottingham & Emerson, 1991). The type of treatment approach used and the sett i n g i n which the treatment i s conducted are determined l a r g e l y by the favored approach of i n d i v i d u a l health care professionals (Gowers, Norton, Halek & Crisp, 1994). In an age of f i s c a l r e s t r a i n t , the merits of t r e a t i n g women i n the hospital must be seriously considered. Moreover, the benefits of h o s p i t a l i z a t i o n to treat women with AN are being increasingly challenged (Freeman & Newton, 1992). However, research evidence does not yet support the choice of either a hospital or community setting (Gowers, Norton, Halek & C r i s p ) . Most experts have l i t t l e doubt that, i n the short-term, in-patient conventional treatment approaches have an immediate and l i f e - s a v i n g value for some people who are s u i c i d a l or have marked weight loss because the focus i s on immediate weight gain (Freeman & Newton, 1992). However, many authors conclude that in-patient conventional treatment programs do l i t t l e to a l t e r the.long-term course of AN 28 (Browning & M i l l e r , 1968). In addition, the relapse rate on discharge from the in-patient environment i s high (Morgan, Purgold & Welbourne, 1983). Freeman, Shapiro, Morgan and Engliman (1990) [cited i n Freeman & Newton, 1992] used weight gain as a measure of recovery from AN to compare i d e n t i c a l treatment approaches for an in-patient and an out-patient program. They found that inpatients gained weight more ra p i d l y i n the hospi t a l , but that the difference between weight gained by in-patients and out-patients over time was ne g l i g i b l e . Women i n the out-patient program indicated that they f e l t more i n control of t h e i r eating behavior, suggesting that they may be at a lower r i s k of relapse than patients i n an in-patient s e t t i n g . Except i n those for whom rapid weight gain has a l i f e - s a v i n g value, the advantage that short-term admissions into the hospital s e t t i n g have on women i s questionable. Indeed, a high suicide rate and/or relapse rate may be associated with conventional in-patient treatment programs that focus on rapid weight gain, rather than on recovery from AN. However, research to support a c o r r e l a t i o n between the two has not been conducted. The conventional treatment approaches i n the hospital and community s e t t i n g include any or a l l of the following: medical treatment, psychotherapy, and behavioral therapy. 29 Medical Treatment Medical interventions primarily conducted on an i n -patient basis include e l e c t r o l y t e monitoring and weight res t o r a t i o n through naso-gastric tube feedings, high c a l o r i e d i e t s , periodic hyperalimentation (such as Total Parental ' Nu t r i t i o n ) , drugs, and i n s u l i n therapy (used to i n i t i a t e hypoglycemia which stimulates appetite). S p e c i f i c interventions unique to ps y c h i a t r i s t s both on an in-patient and out-patient basis include various forms of pharmacological therapy, electro-convulsive therapy, and psychosurgery (up u n t i l 1980) which i s s i m i l a r to a p a r t i a l lobotomy. In addition, psychotherapy, family therapy, and behavioral therapy are used by p s y c h i a t r i s t s (Banji, 1980; Kaplan, Sadock & Grebb, 1994; Sanger & Cassino, 1984). Many p s y c h i a t r i s t s attempt to treat AN from a pharmacological perspective for two reasons. F i r s t , they subscribe to the b e l i e f that AN may be somatogenic, that i s , organic i n nature (Brumberg, 1988). Second, they view many of the behaviors that women with AN exhibit as r e f l e c t i v e of ps y c h i a t r i c disorders that can be controlled with psychotherapeutic drugs (Bock, 1992a). The disorders they l i n k to the AN behaviors include obsessive-compulsive disorders, mood disorders, depression, and anxiety. Consequently, psychotherapeutic drugs such as a n t i -obsessionals, antidepressants, and a n x i o l y t i c agents are 30 often prescribed to women with AN (Bock). Antidepressants such as Prozac have been widely administered to women with AN because of the recognition that they manifest symptoms of depression (Kaplan, Sadock & Grebb, 1994). This recognition i s now controversial (based on a study conducted by Keys, Brozek, Henschel, Mickelsen & Taylor, 1950) as some experts observe that depressive symptoms may be secondary to the • i starvation process and that Prozac treats the symptoms, not the condition (Freeman & Newton, 1992). Crisp, Lacey and Cr u t c h f i e l d (1987), i n a placebo-controlled study, showed that the use of cer t a i n antidepressants does not produce any benefits i n the treatment of people with AN. Antipsychotics (Phendthiazines, p a r t i c u l a r l y Chlorpromazine) are advocated as an important part of the treatment plan for AN because of t h e i r antiemetic and appetite-stimulating properties (Bock, 1992a). However, controversies have arisen because people with AN do not have an i n t r i n s i c loss of appetite, so stimulating t h e i r appetite has been shown to increase t h e i r fear regarding loss of control over eating (Freeman & Newton, 1992). It i s i n t e r e s t i n g to note that, according to Anderson (1990), "treatment of most males with AN does not require psychopharmacological agents unless there i s clea r evidence to indicate that i t i s warranted" (p. 153) because i t i s believed by some pr a c t i t i o n e r s that males have an or i e n t a t i o n 31 to AN that d i f f e r s from that of females. S p e c i f i c a l l y , the depressive symptoms that are manifested i n women are believed to be su b s t a n t i a l l y decreased i n men. However, whether Anderson's view tends to r e f l e c t the androcentric perspective often c r i t i c i z e d i n the feminist l i t e r a t u r e or an actual iatrogenic fact i s debatable. Conversely, O l i v a r d i a , Pope, Mangweth, and Hudson (1995) found that "eating disorders, although less common i n men than women, appear to display s t r i k i n g l y s i m i l a r features i n affected individuals of the two genders" and are therefore treated using s i m i l a r methods (p. 1279). C l e a r l y , pharmacological therapy i s controversial because symptoms that warrant medications may be secondary to the AN. Indeed, some symptoms of AN could be secondary to the conventional treatments that women receive. Skin-fold measurements of the percentage of body fat and weight recordings can be t e r r i f y i n g events for women with AN since they define t h e i r worth through t h e i r weight (Lawrence, 1984). These measurements are used by a l l d i s c i p l i n e s on a regular basis to monitor the 'progress' of women undergoing treatment and to evaluate treatment programs. Peggy Claude-Pierre (Gabereau, 1994) of the Montreux Counseling Center i n V i c t o r i a , BC states that weight recording i s one of the most traumatic experiences for people with AN. She advocates weighing a l l of her c l i e n t s backwards so that they are not able to know t h e i r weight, which she believes circumvents 32 some of the te r r o r such women experience during weighing. This view i s advocated by Day (1974) who suggests that patients be weighed less frequently than d a i l y to avoid increased preoccupation with weight. Garfinkel and Garner (1982) contend that the frequency of weighing should be negotiated with i n d i v i d u a l patients. Touyz, Lennerts, Freeman and Beumont (1990) hypothesized that the rate of weight gain i n patients with AN during refeeding i s not compromised by less frequent weighing. To test t h i s hypothesis, they weighed 15 patients d a i l y at 7:00 AM and 15 d i f f e r e n t patients at the same time on Mondays, Wednesdays and Fridays. Both groups were t o l d t h e i r weight immediately a f t e r they were weighed. Touyz and colleagues found no s i g n i f i c a n t demographic or c l i n i c a l differences between the two groups. However, t y p i c a l of many research studies regarding AN, Touyz and colleagues did not evaluate the long-term outcome of recovery for the women i n t h e i r study comparing how long the two groups a c t u a l l y kept the weight on. Moreover, they did not analyze the AN behavior of the two groups. Whether heightened preoccupation with weight may be secondary to current weighing practices has yet to be researched. Further, i t i s unclear why individuals are weighed at a l l . To my knowledge, there has not been research conducted that validates the need for weighing practices. Yet, health care p r a c t i t i o n e r s appear to f e e l compelled to weigh people with AN. 33 AN has a substantial degree of c h r o n i c i t y (Freeman & Newton, 1992). Longitudinal studies such as those conducted by Walford and McCune (1991) and Hsu, Crisp and Callender (1992) suggest that recovery from chronic AN i s dubious. Further, they outline many psychiatric complications that women with chronic AN manifest, such as anxiety, depression, and phobias. In a comprehensive review of the longitudinal research related to favorable outcome, Herzog, Rathner and Vandereycken (1992) found that "even the best conducted outcome studies merely project p r o b a b i l i t y of the outcome of the ent i r e group of Anorexia Nervosa patients. The i n d i v i d u a l course may, however, be e n t i r e l y unpredictable i n i n d i v i d u a l cases" (p. 25). Most medical treatments focus on short-term interventions directed almost exclusively at weight restoration. Further, most research to evaluate outcomes of conventional treatments focuses on weight restoration practices alone. However, most experts emphasize that a cer t a i n n u t r i t i o n a l s t a b i l i t y i s necessary before psychotherapeutic exploration becomes possible and meaningful (Bruch, 1978). Yet, the desired weight to begin any form of psychotherapy seems to be dependent upon the personal whims of the p r a c t i t i o n e r ( s ) i n charge and not on any s c i e n t i f i c basis. Therefore, while medical treatment i s warranted, much of the l i t e r a t u r e 34 indicates that medical care i s only the i n i t i a l stage to recovery (Bruch, 1 9 7 3 ) . Psychotherapy The ori g i n s of modern psychotherapy stem from the work of Sigmund Freud, CG. Jung, Carl Rogers, and Erik Erikson. Therapists who have studied methods written by these men often disagree on the etiology of A N , and the process by which to conduct the therapy, but t h e i r psychotherapeutic methods attempt to achieve the same outcomes for the i n d i v i d u a l with A N , that i s restoration of optimal health (Lambley, 1 9 8 3 ) . Various types of psychotherapy for A N are structured as i n d i v i d u a l , group, and family psychotherapy. Generally, i n d i v i d u a l therapy consists of the therapist (often a psychologist or a p s y c h i a t r i s t ) maintaining a neutral or passive presence while helping individuals to gain insight and/or coping strategies to o v e r c o m e the AN (Lambley, 1 9 8 3 ) . Group therapy involves a therapist acting as a f a c i l i t a t o r to encourage a group of people with AN to explore, i d e n t i f y , and free associate t h e i r thoughts and feelings i n order to gain insight and/or coping strategies regarding t h e i r A N (Bruch, 1 9 8 8 ) . Family or systems treatment for AN was pioneered by the p s y c h i a t r i s t , Hilde Bruch, who believed that the cause of A N i s within the i n d i v i d u a l and the family unit as a whole. She was a proponent of i n d i v i d u a l and family therapy 35 supporting the notion that while the family ought not to be blamed for causing AN, i t should be included i n the treatment for AN (Bruch, 1978). During family therapy, the i n d i v i d u a l and her family members are counseled j o i n t l y and separately throughout the treatment process. Much of the l i t e r a t u r e focuses on family interventions as they r e l a t e to c h i l d r e n and adolescents who have AN. L i t t l e i s documented r e l a t i n g family therapy to those who are adults with AN. Garfinkel and Garner (1982) chastise therapists for t h e i r i n a b i l i t y to provide adequate descriptions of e f f e c t i v e psychotherapeutic interventions they have used i n t h e i r p r a c t i c e , thus leading to d i f f i c u l t i e s r e p l i c a t i n g these interventions. Various researchers have attempted to estimate the value of psychotherapy for AN. Gowers, Norton, Halek and Crisp (1994) randomized ninety subjects with AN i n order to study the outcome of in-patient and out-patient psychotherapy. T h i r t y people were randomized to an in-patient treatment group that received intense i n d i v i d u a l , cognitive, behavioral, group, and family therapy. Twenty people were randomized to an out-patient treatment group that received only group therapy, and twenty people were randomized to an out-patient treatment group that received i n d i v i d u a l and family psychotherapy. F i n a l l y , twenty people who refused treatment were assigned to a no treatment control group. Gowers and colleagues concluded that a l l three treatment 36 groups were highly e f f e c t i v e i n terms of s o c i a l and psychosexual adjustments (the control group was unchanged). However, i n a one year follow-up, there was a r e l a t i v e f a i l u r e of the in-patient treatment group to produce sustained weight gain, unlike the out-patient treatment groups. Thus, i t would seem that the type of therapy may not be as important i n treating AN as the sett i n g i n which i t i s conducted. Russell, Szmukler, Dare, and E i s l e r (1987) conducted a contr o l l e d t r i a l study researching the benefits of either-family therapy or psychotherapy i n fif t y - s e v e n i n d i v i d u a l s with AN with follow-up at one year. They reported that family therapy was marginally more e f f e c t i v e than psychotherapy but only i n those individuals whose condition began before the age of nineteen and whose duration of the condition was less than three years. This study indicates that understanding the context of AN i n each person may be an important part of therapy. C r i t i c s of psychotherapy argue that therapists often t r y to f i t every woman with AN into the framework that they have been trained i n rather than to mold the framework into the context of each woman with AN (Lambley, 1983). Moreover, Lambley contends that standard insight psychotherapy has lim i t e d use i n the treatment of AN because i t has no th e o r e t i c a l base or method s p e c i f i c to AN. Further, i n his 37 own psychology practice, Lambley observes that the only aspect that d i f f e r e n t i a t e s untreated people with AN from treated people with AN i s the a b i l i t y to tal k more f l u e n t l y about t h e i r condition. In therapy, he contends, in d i v i d u a l s learn a l l the psycho-jargon but not how to get well. Hence, they remain anorexic because t h e i r therapy has almost e n t i r e l y focused on discussion alone. Geary (1988) notes that psychotherapeutic treatments place l i t t l e emphasis on so c i o c u l t u r a l influences contributing to AN. Instead, she believes they employ the premise that AN i s symptomatic of unconscious c o n f l i c t which w i l l resolve with insight into the nature and meaning of the c o n f l i c t . While there i s a debate, psychotherapy may be warranted because i t re s u l t s i n women with AN.identifying p a r t i c u l a r situations that may cause them stress or trauma. Identifying such situations helps women with AN to cope with subsequent s i t u a t i o n s . Yet, i t appears that the setting and the context i n which psychotherapy i s conducted i s pi v o t a l i n influencing the outcome of care. In evaluating the aspects of treatment that were p o s i t i v e for recovery from the perspective of the patient, Noordenbos (1992) found that psychotherapy ranked most p o s i t i v e amongst respondents recovering from AN. Behavioral Therapy Behavioral therapy programs were f i r s t introduced for the treatment of AN approximately twenty years ago (Solanto, 38 Jacobson, Hellers, Golden & Hertz, 1994). Since then, behavioral therapy has become the standard approach used for conventional treatments of AN i n a l l settings (Kaplan, Sadock & Grebb, 1994). One reason offered i s that the behavioral programs "are e a s i l y mastered by paramedical s t a f f and have been shown to f a c i l i t a t e weight gain" (Touyz, Lennerts, Freeman & Beumont, 1990, p. 752). The general emphasis of behavioral therapy i s on changing the behavioral patterns of women with AN i n response to s t i m u l i , whether they are p h y s i o l o g i c a l l y , psychologically or s o c i o c u l t u r a l l y derived (Geary, 1988). Changing behavioral patterns i s usually accomplished through e s t a b l i s h i n g a contract with the i n d i v i d u a l i n which reinforcements are provided contingent upon attainment of weight goals or on appropriate eating behavior (Solanto, Jacobson, H e l l e r s , Golden & Hertz, 1994). Behavioral approaches are generally accepted as the treatment modality for f a c i l i t a t i n g weight gain and t r e a t i n g maladaptive eating patterns during h o s p i t a l i z a t i o n (Glatter Nusbaum & Drever, 1990). Touyz, Beumont, Glaum, P h i l l i p s and Cowie (1984) compared a s t r i c t and a lenient behavioral program i n refeeding patients with AN. They concluded that there was no s i g n i f i c a n t difference i n the weight gain of the two groups, although the lenient program was much more acceptable to patients. Also, Eckert, Goldberg, Halmi, Casper and Davis (1979) did not f i n d any 39 benefit i n using s t r i c t behavioral regimes aimed' at weight gain. Solanto, Jacobson, Hellers, Golden and Hertz (1994) compared the weight gain of in-patients with AN under two behavioral contracts over a one month period. Under Contract One, subjects had to gain 0.8 pounds (0.36 kilograms) every four days to earn reinforcement p r i v i l e g e s . Under Contract Two, subjects had to gain 1.2 pounds (0.55 kilograms) every four days to obtain reinforcement. Reinforcements contingent upon weight gain included receiving v i s i t o r s , watching t e l e v i s i o n , and time away from the unit. Solanto and colleagues found that increasing weight gain i n behavioral contracting was associated with an increase i n the rate of weight gain without any accompanying complications of refeeding such as bloating. Although the authors.acknowledge i n the study that they did not delineate the e f f e c t s of the long-term outcome of varying the weight gain, they do not address the short-term or long-term e f f e c t s on eating behavior of the two groups. This omission i s t y p i c a l of current documented studies. C r i t i c s of behavioral therapy contend that the focus of treatment for women with AN has been primarily on weight restoration alone; l i t t l e attention to short-term or long-term e f f e c t s of behavioral therapy on eating behaviors i s given (Bruch, 1973). Generally, behavioral therapy does not 40 treat the condition, rather i t forces the i n d i v i d u a l to comply with someone else's rules or suffer the consequences (Bruch; Dunbar, 1986; Lawrence, 1984; MacLeod, 1981). Lawrence states that i n an environment where behavioral therapy i s practiced, women are often coerced into reaching a target or ide a l weight usually within a period of weeks. This narrow focus attributes phenomenal importance to weight i t s e l f . Further, Lawrence asserts, behavioral therapy " i s making a fundamentally 'anorexic' mistake; i t treats weight as a magical q u a l i t y , allowing numbers on the d i a l to take over from r e a l i t y " (1984, p. 76). Moreover, she states that many studies indicate that behavioral therapy i s temporary i n i t s e f f i c a c y as most women with AN learn to conform with s t a f f expectations of the weight gain regime simply to get out of the hospital or the day program. Further, studies that evaluate the outcome of behavioral approaches are often empirical and do not r e f l e c t the humanistic components of treatment, or the opinions of the patients who experience the treatment. Thus, the revolving door syndrome of eating while i n a treatment program and starving while discharged i s commonplace for women with AN. It i s debatable whether behavioral therapy i s warranted. According to Meades (1993), the esse n t i a l changes i n behavioral treatment approaches have made i t more acceptable over time. S p e c i f i c a l l y , the person su f f e r i n g from AN has 41 been consulted and advised during the compilation of a treatment program. Further, Meades asserts that autocratic programs d i c t a t i n g treatment and excluding the suf f e r e r from consultation have been larg e l y eschewed. Contrary to many anecdotal writings (Dunbar, 1986; MacLeod, 1981), Noordenbos (1992) found that behavioral therapy was generally evaluated p o s i t i v e l y by people who had experienced the therapy for AN. Many experts, nurses included, find some merit i n behavioral therapy, and they are able to j u s t i f y that i t i s a legitimate form of therapy because i t i s currently a means to succes s f u l l y curb l i f e - t h r e a t e n i n g aspects of AN i n the short-term. The proceeding section presented the conventional treatment approaches available to women with AN. They are medical interventions, psychotherapy and behavioral therapy. A l l of these approaches are available i n the hospital or community se t t i n g . A l l are considered mainstays of current treatments offered for AN. Unconventional Treatment Approaches After being successfully treated i n an unconventional treatment program, one woman said of the conventional treatment approach "hospitals w i l l get your weight up, but they won't do anything for your mind. It's h e l l , I wouldn't wish i t [hospital] on my worst enemy." Another said, "Hospitals are holding tanks; they kept me a l i v e " (Goldberg, I 42 1994). These are quotes from consumers of conventional treatment programs, people who were d i s s a t i s f i e d with t h e i r care, only to claim to be treated successfully i n unconventional treatment programs. The following section w i l l describe some of the unconventional treatment programs availa b l e to consumers. They include private c l i n i c s , e x p e r i e n t i a l therapies, support groups, and s e l f - h e l p groups. For the purposes of t h i s study, unconventional treatment approaches are defined as those that are not based on the aforementioned medical, psychological, behavioral, and pharmacological treatment approaches. Private C l i n i c s -N In the United States, numerous private c l i n i c s have arisen to combat AN (Volger, 1993). Among the c l i n i c s i s the Renfrew Center located i n F l o r i d a . Described by Brookes (1993), the Renfrew Center uses an empowerment model to promote s e l f - i n i t i a t i v e and s e l f - r e s p o n s i b i l i t y . According to Brookes, many conventional treatment approaches use n u t r i t i o n a l r e h a b i l i t a t i o n and symptom management which are pr i m a r i l y based on external control, coercion, and v i o l a t i o n of privacy. By contrast, the Renfrew Center uses a non-coercive approach to symptom management of AN based on an i n t e r n a l locus of control. Four primary aspects of the approach include self-management techniques as opposed to s t r i c t environmental controls; treatment respectful of the 43 i n d i v i d u a l and designed to promote s e l f - i n i t i a t i v e and r e s p o n s i b i l i t y ; treatment viewed as partnership between the su f f e r e r and the treatment team; and an appropriate d i v i s i o n of r e s p o n s i b i l i t y i n the feeding r e l a t i o n s h i p . The extent to which the center i s e f f e c t i v e i n terms of complete recovery from AN and the cost of attending the program i s unclear. In Canada, most treatments for AN are covered under the Canada Health Care Act; therefore, they are offered free of charge to the consumer. S t i l l , most are based on conventional treatment approaches. The options for consumers who are interested i n al t e r n a t i v e approaches are l i m i t e d . Private c l i n i c i a n s who are c e r t i f i e d counselors and/or therapists w i l l o f f e r t h e i r services, but they are c o s t l y . The exception i s a unique and controversial c l i n i c i n V i c t o r i a , B r i t i s h Columbia c a l l e d the Montreux Counseling Center*. The center i s owned and operated by Peggy Claude-Pierre, who i n 1992 bought a large house known as the "mansion" with the mandate of providing treatment to people with eating disorders. *The following section i s based on a segment of the V i c k i Gabereau Show, aired February 16, 1994 on the Canadian Broadcasting Corporation Radio Program, i n which V i c k i Gabereau interviewed Peggy Claude-Pierre about the Montreux Counseling Center that she founded and operates. In addition, t h i s section i s adapted from the t e l e v i s i o n show 20/20, ai r e d on December 2, 1994 on the National Broadcasting Company where a one hour documentary was presented e n t i t l e d The Hunger Inside about the Montreux Counseling Center (Goldberg, 1994) 44 The approaches at the Montreux Center mimic those which proved successful for Claude-Pierre's own daughters who recovered from AN with the help of t h e i r mother alone. Claude-Pierre's approach i s intensely personal, and some consumers state that her center has become a sanctuary for in d i v i d u a l s who have been poorly served by conventional treatments. She claims that she has provided a l t e r n a t i v e treatment for more than 400 people with AN over the l a s t decade. Claude-Pierre, a psychologist by profession, contends that AN becomes a symptom that develops from accumulated negativity and stress. Based on t h i s philosophy, she has trained 40 "care workers", many of whom have had AN themselves. Their objective i s to bring constant comfort, p o s i t i v e reinforcement, and unconditional love to the su f f e r e r . For continuity of care, f i v e workers are assigned to one sufferer throughout her/his stay and w i l l receive one-on-one, 24 hour care. In the f i r s t couple of weeks, the goal of treatment i s to e s t a b l i s h a bond of t r u s t . The c l i e n t i s inundated with endearments, and showered with physical a f f e c t i o n i n terms of hugs and kisses which i s thought to rein f o r c e p o s i t i v e emotions amongst the i n d i v i d u a l s . Claude-Pierre places limited emphasis on eating issues. However, part of treatment includes the i n d i v i d u a l eating small portions of food every two hours as she gets better. How t h i s i s accomplished i s unclear. Claude-Pierre believes 4 5 that weight scales are one of the most t e r r i f y i n g objects to people with AN and that any type of measurement i s dangerous and threatens the recovery of AN. Therefore, Claude-Pierre weighs a l l of her patients backward, promising them that they can t r u s t her and reassuring them that they do not have to worry anymore about numbers. Why Claude-Pierre weighs ind i v i d u a l s at a l l i s unclear. The average length of stay for an i n d i v i d u a l at the center i s nine months to one year according to Claude-Pierre. Further, she explains that the center i s medically supervised. Claude-Pierre believes that recidivism should not occur i f the treatment i s properly ca r r i e d out. She i s quick to not place blame on any i n s t i t u t i o n or system for the perceived ineffectiveness of conventional methods of treatment. However, she does openly acknowledge that i n s t i t u t i o n s are counter-productive i n that "they unwittingly t e l l sufferers that i f they eat food, i t w i l l fatten them up, and then they can be discharged". Claude-Pierre's approach i s not without c r i t i c i s m . The Montreux Counseling Center i s not funded by the Canadian health care system; therefore, a one month stay i s approximately $15,000. Although Claude-Pierre claims that no one i s refused treatment, one t h i r d of the patients cannot aff o r d the treatment and must be subsidized. Claude-Pierre claims that ninety percent of patients who have been through 46 the center have recovered. Recently, testimonials from recovered sufferers have been offered through the media to valida t e t h i s claim. However, she has not empirically evaluated the outcomes of the treatment provided at the center. C r i t i c s have accused her of being a p u b l i c i t y seeker. For example, Vincent (1994) i n s i s t s that Claude-Pierre uses high p r o f i l e cases of women who have been unsuccessfully treated i n conventional treatment programs to campaign for p u b l i c i t y and attention for her own program. Further, Vincent states "the p u b l i c i t y also f a i l s to acknowledge a l l the good treatment which i s going on: and the personal success s t o r i e s of the many people who have recovered from eating disorders" [in conventional treatment f a c i l i t i e s ] (p. 7). In March, 1995 Sheena's Place, named a f t e r Sheena Carpenter who died of AN i n 199 3 at the age of 22 opened i n Toronto, Ontario. Sheena's Place was a non-profit t r a n s i t i o n home set up "be a buffer for those women who aren't quite ready to face the world" (p.52). The f a c i l i t y was a home, not a medical centre and to accommodate ten to twelve women at a time for a stay of approximately three months. Admittance to Sheena's Place was based on a doctor's r e f e r r a l . Treatment was i n the form of private counseling, group therapy, and seminars on topics such as job searches, n u t r i t i o n , s e x uality and society and self-improvement (Tranquada, 1995). Since December, 1995, the centre has been unable to stay open due 47 to lack of funding. A fund-raising campaign i s currently i n existence to reopen Sheena's Place (Verbal Communication, Mrs Carpenter, December, 1995). Ex p e r i e n t i a l Therapies Exp e r i e n t i a l therapies are new (within the l a s t 30 years) psychotherapeutic approaches that o f f e r a l t e r n a t i v e and/or adjunctive treatment for sufferers of AN. Most e x p e r i e n t i a l therapies can be applied to both a hospital and community se t t i n g . S t i l l , many require investigative research and experimentation before they w i l l be integrated into the mainstream. Among the 'verbal' experiential therapies are the Nurturant-Authoritative Therapy developed and practiced by Levenkron (1982), and Poetry Therapy described by Woodall and Anderson (1989). Levenkron asserts that conventional psychotherapy presumes a neutral attitude on the part of the therapist, whereas Nurturant-Authoritative Therapy demands more i n i t i a t i v e and more active and deliberate behavior on the part of the therapist. Levenkron claims that t h i s therapy works because i t helps the c l i e n t learn to accept and receive emotional support. Woodall and Anderson describe the use of Poetry Therapy i n the treatment of many sufferers who are re t i c e n t , and who w i l l only communicate monosyllabically. The authors claim that reading and writing poetry i s thought to help the c l i e n t access and express her feelings. Neither 48 Levenkron nor Woodall and Anderson describe the outcomes of the therapies. Other e x p e r i e n t i a l therapies target interventions d i r e c t l y at the somatic, 'nonverbal' l e v e l of dysfunction. Hudgins (19 89) discusses Gestalt Therapy and Psychodrama. Hudgins notes that many c l i e n t s depend e n t i r e l y on what others say and do to function i n society ( i n d i c a t i v e of an external locus of control) to the extent that they can become emotionally paralyzed. Therefore, the author contends that these therapies focus on "active experiencing" (p.237), a technique used to create an awareness and develop the c l i e n t ' s i n t e r n a l locus of control. Role-playing i s an example of active experiencing. Deen Miller* (1991) and Rice, Hardenbergh, and Hornyak (1989) endorse Body-Image or Dance/Movement Therapy as an approach to treatment. According to the authors, Dance/Movement Therapy focuses on the i n t e r r e l a t i o n s h i p of the body and the mind. Although t y p i c a l l y addressed i n verbal forms of psychotherapy, the authors contend that issues such as sensory awareness and experiencing pleasure are brought to a t a c t i l e or somatic l e v e l using Dance Therapy. The r e s u l t i s that the c l i e n t i s able to experience the sensation i n addition to understanding i t c o g n i t i v e l y . For example, dancing with a partner arm-in-arm i s thought to evoke emotion i n the woman with AN that A would not surface without the sensations of touch and 49 movement. Art Therapy, suggested by Fleming (1989), has been used to treat AN because i t targets areas such as c r e a t i v i t y and self-confidence which are considered lacking or nonexistent i n people with AN. S p e c i f i c a l l y , Fleming asserts that Art Therapy emphasizes the creative process as an outl e t for expression, for mastery over impulses and fears, and for increasing s e l f - c o n t r o l . This i s accomplished through drawing or painting. As well, Music Therapy i s practiced by B a l l Parente (1989) for the treatment of AN. She states that the music therapist seeks to b u i l d and reinforce the sufferer's slow discovery of her own opinions and perceptions and also gently challenges her feelings of self-worth, which are often dependent on others' expectations and evaluations. This i s accomplished through engaging the sufferer i n breathing exercises to the rhythm of a certa i n type of music, playing an instrument, and p a r t i c i p a t i n g i n muscle relaxation exercises that are accompanied by selected pieces of music. Many exp e r i e n t i a l therapies are based on t h e o r e t i c a l concepts or models (B a l l Parente, 1989) and have received accolades from professionals who practice within the confines of conventional treatment approaches. A number of studies have endorsed the benefits of experiential therapies"with a broad range of populations, including children and the e l d e r l y as well as people with pathological and emotional problems that vary i n the degree of severity (Hudgins, 1989; 50 Rice, Hardenbergh & Hornyak, 1989). However, the outcomes of treatment have not been empirically tested or adequately documented. Support Groups and Self-Help Groups Peer and family support groups and s e l f - h e l p groups for AN have arisen a l l over the world. Generally, the groups have not been evaluated for t h e i r effectiveness because meetings are closed to researchers. However, the l i t e r a t u r e indicates that these groups are i n high demand from consumers. Noordenbos (1992) found that respondents recovering from AN ranked s e l f - h e l p groups as the second most p o s i t i v e treatment approach next to psychotherapy. Among the peer or support groups are the National Association of Anorexia Nervosa and Associated Disorders (ANAD) (Ardell & A r d e l l , 1985) i n Canada, the Anorexia Nervosa Aid Society (Volger, 1993), and the American Anorexia/Bulimia Association i n the United States (Kinoy, M i l l e r & Atchley, 1984). Most peer groups were formed by those a f f l i c t e d with AN or by the families and friends of those indiv i d u a l s to support and act as an adjunct to medical and psychological therapy (Kinoy et a l . ) . Generally, these groups meet on a weekly basis. Often, the group i s led by a recovering sufferer or a s i g n i f i c a n t other. Depending on the organization, membership provides access to newsletters, book reviews, workshops, and guest lectures. Often, peer groups 51 are open only to those recovering or recovered from AN. Anyone can attend " s i g n i f i c a n t other" support groups but not under the auspices of a researcher or observer (including students studying AN) (Kinoy et a l . ) . One of the largest s e l f - h e l p groups related to an eating disorder i s Over-eaters Anonymous or the 12 step program. Over-eaters Anonymous i s a twenty three year old organization with an estimated membership of 190,000 across North America that meets once a week (Vogler, 1993). Over-eaters Anonymous began when three women took the p r i n c i p l e s of Alcoholics Anonymous and adapted i t to f i t overeaters (Volger). The organization has expanded to include members with any type of eating disorder. The Over-eaters Anonymous program demands the indi v i d u a l ' s acceptance of the following three concepts: F i r s t , individuals with eating disorders are powerless over addiction, and t h e i r l i v e s are unmanageable. Second, they are not responsible for t h e i r diseases; they are responsible for t h e i r recovery. F i n a l l y , they can no longer blame people, places, and things for t h e i r addiction; they must face t h e i r problems and t h e i r feelings (Rogers, 1988). The goals of treatment are to gain control over the eating behavior, thus stop the s e l f - d e s t r u c t i v e behavior; i d e n t i f y and modify dysfunctional thoughts, b e l i e f s , and values through cognitive awareness; and es t a b l i s h and then maintain recovery (Riley, 52 1991). The Over-eaters Anonymous program involves group meetings with people who have eating disorders (usually Compulsive Over-eating, Bulimia, and/or Anorexia Nervosa); working the 12 steps (Appendix B); the use of fellowship and sponsorship; the use of the disease concept (the cornerstone of the program i s acknowledging that an eating disorder i s an involuntary psychobiologic state that released the person from r e s p o n s i b i l i t y but presses the person to manage the problem now that i t e x i t s ) ; and telephone therapy. The conceptualization of eating disorders as addictive behaviors i s a r e l a t i v e l y new concept (Riley, 1991). Orford (1985) notes that eating disorders, l i k e other s e l f -destructive addictions to substances or behaviors, develop as a process. The process may be i n i t i a t e d by a s p e c i a l i z e d t r i g g e r such as f e e l i n g f a t , which underlies purging. But, eventually, less s p e c i a l i z e d feelings w i l l gradually broaden to encompass many emotional or s o c i a l s t i m u l i such as f e e l i n g anxious no matter what the cause. Research conducted by Marrazzi and Luby (1986) reveals that AN behaviors such as binging, purging, and r e s t r i c t i n g may be pathophysiologically r e l a t e d to an increase i n endogenous opiate l e v e l s , or addiction to the release of neurotransmitters that r e i n f o r c e the s e l f - d e s t r u c t i v e behaviors of AN (Copeland, 1985). L i t t l e i s written about the e f f i c a c y or e f f e c t s of the Over-eaters Anonymous program. To my knowledge, no research 53 has been conducted whether to investigate or to evaluate i t s e f f e c t s . C r i t i c s of 12 step programs i n general (such as Alcoholics Anonymous, Narcotics Anonymous, and Adult Children of Alcoholics Anonymous) describe the programs as c u l t s (Galanter, 1990, Peele, 1989). Further, some providers of treatment for AN view substance addictions as a masking of or d i s t r a c t i o n from pain rather than a display of pain, as i s the case with AN (Goldberg, 1994). In addition, experts argue that the Over-eaters Anonymous program completely absolves any s o c i o c u l t u r a l or psychological influences that may be contributing to the AN, emphasizing the powerlessness that i n d i v i d u a l s have over t h e i r behavior. Consequently, the program does l i t t l e to teach women with AN how to cope with t h e i r r e a l i t y . Also, many experts contend that women with AN must take r e s p o n s i b i l i t y for t h e i r behavior, and various more popular treatments are b u i l t on t h i s premise (Riley, 1991). Since the Over-eaters Anonymous program i s i n c l u s i v e of a l l eating disorders, Riley (1991) cautions that people with AN could experience tremendous discomfort i f most people i n the group are compulsive over-eaters and are grossly overweight. In reviewing the l i t e r a t u r e related to Over-eaters Anonymous, i t appears that a prerequisite of addictions therapy i s acknowledging AN as a disease. Whether AN i s a disease, a condition, or an addiction i s s t i l l a controversial issue. The notion that addictions therapy 54 attempts to medicalize and pathologize women's bodies may be of concern. One wonders whether individuals with AN, who go through the 12 step program, benefit by viewing themselves as addicts for the rest of t h e i r l i v e s . The previous section presented some of the many unconventional treatment approaches available to consumers. They include private c l i n i c s , e xperiential therapies, support groups, and se l f - h e l p groups. Each treatment explores and attempts to r e c t i f y the myriad aspects of AN. As i n conventional treatment approaches, none i s so e f f e c t i v e as to be pre-eminent as,the basis for treating AN. Nursing Approaches: Ideological Perspectives and Practice The r i s e i n the number of women being cared for by nurses i n many settings necessitates the development of nursing approaches which r e f l e c t both t h e o r e t i c a l and empirical nursing knowledge. Yet, nurses continue to take guidance and d i r e c t i o n from conventional treatment approaches that are based on i d e o l o g i c a l perspectives derived from other d i s c i p l i n e s . This section then w i l l put the phenomenon under study within the context of ex i s t i n g nursing perspectives, and approaches to nursing practice. Nursing Approaches: Ideological Perspectives Most nursing care i s based on id e o l o g i c a l perspectives of other d i s c i p l i n e s . S t i l l , many nurses recognize the importance of using a model or framework i n practice that i s 55 unique to nursing i n that i t provides d i r e c t i o n for comprehensive nursing care to women with AN. Geary (1988) conducted an extensive review of models used by nurses caring for women with AN that included psychoanalytic models, family or systems models, behavioral models, and feminist [sociocultural] modelsv She argues that the use of a single type of treatment approach i n each s e t t i n g i s lim i t e d because the breadth and complexity of the problems associated with AN necessitate the use of a model that can incorporate the emotional, cognitive, physiologic, and c u l t u r a l domains into both prevention and treatment. For t h i s reason, she pet i t i o n s for a h o l i s t i c nursing model that 1) r e l i e s on viewing the ind i v i d u a l as a whole person within the family and c u l t u r a l context, and 2) focuses on t e r t i a r y care and wellness promotion i n numerous settings such as community agencies and hospital settings both medical and psy c h i a t r i c i n orientation. However, Geary does not describe what the structure of such a model would look l i k e . Meades (1993) designed a model (unnamed) for describing eating disorders. He conceptualizes AN and Bulimia Nervosa on an axis at the polar ends of which are the dynamic causal factors: d i s t o r t e d body perceptions and stresses i n interpersonal r e l a t i o n s h i p s . Further, he uses diagrams to conceptualize the d i f f e r e n t modes of dietary control suggesting the varying roles of physiological and cognitive 56 factors i n non-dieters, d i e t e r s , anorectics; and binge-eaters. Meades i l l u s t r a t e s how his model arid diagrams can be used to outline community psychiatric nursing interventions for a v a r i e t y of eating disorders. Interventions he includes are cognitive-behavioral approaches, anxiety a l l e v i a t i o n techniques, and "family-therapy-type techniques" (p. 370). Together, the model and diagrams o f f e r d i r e c t i o n for nursing care. S t i l l , they are based on conventional treatment models. Further, whether the interventions have been u t i l i z e d or evaluated i n any s e t t i n g i s unclear. In addition to recognizing the need to devise models that d i r e c t nursing care, the l i t e r a t u r e validates that models are used i n nursing practice to provide d i r e c t i o n for nursing care. For example, Conrad, Sloan and Jedwabny (1992) describe a model that was designed by nurses for nurses, and which i s currently being used i n practice. Nursing s t a f f observed that the dysfunctional communication patterns used between individ u a l s with AN and t h e i r respective families mirrored the control issues played out between nurses and attending physicians on an eating-disorder ward. The s t a f f hypothesized that patients were "out of control" (p.14) because of the clashing nurse-physician rapport; that i s , the attending physicians' control over the therapy regime was compromising the nurses' a b i l i t y to manage acting-out behaviors of the patients i n the milieu. Using knowledge of family systems, 57 transference concepts, and change theory, s t a f f designed and implemented The Therapeutic/Administrative S p l i t Model (T/ASM) to promote a coordinated therapeutic approach for responding to acting out behaviors of the patients, and to e x p l i c i t l y define the role that nurses were responsible for i n treatment. The philosophy of care on the ward involved what i s commonly known in the l i t e r a t u r e as the Two Track Philosophy. Track One related to issues of weight, r e s t r i c t i n g and binging, and strenuous d i e t i n g , while Track Two re l a t e d to psychological factors underlying personality development and family themes. The nurses decided that t h e i r role was l i m i t e d to the f i r s t track. The second track, which emphasized the psychological problems, was seen as the domain of the physicians. The T/ASM involved a written set of protocols regarding pre-admission, screening, admission, treatment and discharge planning for issues related to weight, n u t r i t i o n and binging. It provided both a s p e c i f i c demarcation of the scope of the ro l e of the nurse and a standard care plan to guide nurses. The authors concluded that the model has led to more e f f e c t i v e treatment for AN because consistency now ex i s t s between the nurses and the physicians and because nurses now function as a i n t e g r a l part of the team. While the authors stated the T/ASM was simple and e f f e c t i v e for s e t t i n g and 58 reviewing goals, t h i s was not e x p l i c i t l y delineated. The T/ASM i s li m i t e d as a comprehensive and discrete nursing model because i t i s based on behavioral p r i n c i p l e s and di r e c t s the nurses to many tasks that focus primarily on weight restoration while ignoring the psychosocial aspects of nursing care. Various nurses have undertaken to describe and publish nursing frameworks. Such frameworks are often based on borrowed models or concepts modified from other d i s c i p l i n e s . Some are incomplete i n that they only provide d i r e c t i o n for a p a r t i c u l a r aspect of nursing care for those with AN. Gray Deering and Niziolek (1988) describe a framework for caring for the c h r o n i c a l l y - i l l person with AN i n which the concepts of "holding environment" and "good enough mothering" are adapted and modified from Winnicott (1965). The authors describe the concept of "holding environment" as a place where the nurse provides a structure that ensures physical and emotional safety within and beyond the hospital proper. The concept "good enough mothering" provides d i r e c t i o n for the r o l e of the nurse which the authors believe i s to set l i m i t s while encouraging the ind i v i d u a l and promoting independence. Although the concepts defined*by Winnicott are not described i n the a r t i c l e , the authors say that they chose them because they are "major healing factors... created by the therapeutic milieu" (p. 11). The authors do not describe 59 the structure of t h i s framework or how i t should be implemented. Treatment for AN i s varied and complex; many experts concur that i t i s most successful when i n i t i a t e d e arly i n the course of the condition. A number of assessment guides have been developed and implemented by nurses to f a c i l i t a t e e arly detection of AN. One such guide, outlined by Connolly and Corbett-Dick (1990), supplies school nurses with a framework for the prevention and assessment of AN. It i s derived from Wold's (1981) f i v e roles for nurses i n school health programs. The roles include the school nurse as d e l i v e r e r of health services; as manager of health care within the school health program; as health counselor for in d i v i d u a l and groups; as an advocate for the health rights of children; and as health educator i n the school health program. Another guide, developed by Van Daalen and Marko (1991), describes a general assessment tool i n the form of a check-l i s t . Developed by school nurses, and approved by the National Eating Disorder Information Centre, the to o l i s designed to help school and community health nurses i d e n t i f y i n d i v i d u a l s at r i s k of developing AN. Neither publication indicates whether the outcomes of these guides have been proven e f f e c t i v e i n preventing AN. Using Gordon's functional health patterns i n conjunction with the nursing process, Bryant and Kopeski (1986) have 60 developed an assessment guide for nurses caring for those ind i v i d u a l s h o s p i t a l i z e d with AN. They d e t a i l nine patterns that the nurse should use to f a c i l i t a t e assessment and the delineation of potential or actual health care problems associated with the hospitalized i n d i v i d u a l . These include the health-perception-health management pattern, the nutritional-metabolic pattern, the elimination pattern, the a c t i v i t y - e x e r c i s e pattern, the cognitive-perceptual pattern, the self-perception-self-concept pattern, the r o l e -r e l a t i o n s h i p pattern, the sexuality-reproductive pattern, and the coping-stress-tolerance pattern. The patterns are s i m i l a r to 'needs' or 'systems' that are generally used by nurses to define, plan, and evaluate t h e i r care. The authors conclude that the assessment guide provides nurses with a complete problem l i s t and f a c i l i t a t e s development of a comprehensive care plan. It i s unclear whether t h i s formalized guide has been implemented or evaluated i n any s e t t i n g . Further, the o r i g i n of Gordon's functional health patterns or the benefit of i t s use i s not mentioned. The models and frameworks reviewed are a l l associated with or dependent upon conventional treatment approaches. Further, i t i s unclear whether most have been implemented or evaluated for t h e i r e f f i c a c y . An extensive review of the l i t e r a t u r e revealed that there are no discrete nursing models or frameworks that provide d i r e c t i o n for comprehensive or 61 h o l i s t i c nursing care of women with AN i n the hospital or community set t i n g . Nursing Approaches: Practice Given the lack of uni v e r s a l l y accepted treatments for AN, most nurse experts advocate the use of an e c l e c t i c approach to caring for those with AN because of the multiple dimensions to the condition ( L i l l y & Brown Sanders, 1987). In addition, consistent with a h o l i s t i c perspective, many nurses seem to recognize the need for in d i v i d u a l i z e d care (Love & Seaton, 1991). McNamara (1982) contends that the hallmarks of successful treatment of AN are the nurturing and caring q u a l i t i e s which nurses bring to t h e i r patients. The importance of establishing an a l l i a n c e and tr u s t with the ind i v i d u a l who has AN i s well recognized i n the nursing l i t e r a t u r e ( L i l l y & Brown Sanders, 1987; L y a l l , 1991; McNamara, 1982; Palmer, 1990). This section hs therefore dedicated to an exploration of the variety of nursing care approaches provided to women with AN. The extent to which nurses f a c i l i t a t e conventional treatment approaches as opposed to delineating a treatment approach s p e c i f i c to nursing care for women with AN i s debatable. Love and Seaton (1991) argue that a " r i g i d adherence to one th e o r e t i c a l orientation and treatment modality represents a potential d i s s e r v i c e to the patient" (p. 686). Despite t h e i r support for an e c l e c t i c treatment 62 approach, they believe that c e r t a i n fundamental p r i n c i p l e s e x i s t that are recognized as the cornerstones of nursing care. To t h i s purpose, they highlight s a l i e n t aspects of treatment that they c a l l "nursing therapeutics" which are therapies that can be used i n a l l settings. They c i t e two areas as therapeutics: the assessment process and the treatment approaches. Aspects of the assessment process include determining the individual's a b i l i t y to b u i l d a l l i a n c e s , her motivation for treatment, her body image perceptions, her coping strategies, and her relationships to family and s i g n i f i c a n t others. F i n a l l y , a mental status examination, a treatment history, and a physical examination are included as part of the assessment process. The treatment approaches are based on establishing a nursing diagnosis, i d e n t i f y i n g the goals of care, the outcome c r i t e r i a , and the suggested interventions. The interventions that Love and Seaton emphasize include physiologic monitoring, psycho-education, group therapy, behavior modification techniques, and pharmacotherapy. Why the "nursing therapeutics" described by the authors were i d e n t i f i e d as the cornerstone of nursing care i s unclear. Further, the extent to which they have been tested or evaluated i n the c l i n i c a l s i t u a t i o n i s not reported. F i n a l l y , the p r i n c i p l e s of intervention seem to be based on the perspectives of those that mimic conventional treatment approaches. 63 The importance of creating nursing approaches which are responsive to both the predictable and the unique experiences faced by women i s evident i n the l i t e r a t u r e . For example, Nottingham and Emerson (1991) document the stages from diagnosis to death for a s i x t y year old women with AN. Their findings i l l u s t r a t e that people with AN may, at d i f f e r e n t ages, r a d i c a l l y d i f f e r i n the symptoms, behaviors, psychological p r o f i l e , and family dynamics they exhi b i t . Consequently, age may have an important influence on the treatment experience of AN. L i l l y and Brown Sanders (1987) present excerpts from four cases focusing on nursing approaches based on a "generic eating disorder protocol" i n which the structure of the protocol includes twelve nursing r e s p o n s i b i l i t i e s for the care of adolescents with AN. The authors i l l u s t r a t e the need to modify nursing approaches according to the ind i v i d u a l needs of each patient. For example, i n the absence of weight gain, Ann was confined to bedrest and was unable to receive v i s i t o r s . However, her ov e r a l l health status changed very l i t t l e under these r e s t r i c t i o n s . A therapy session revealed that, as part of her AN behavior, Ann took refuge i n seclusion. The incentives/reinforcements held out to gain weight and thereby to get Ann off bedrest included freedom to Have v i s i t o r s and leave her room. Yet, the incentives were obviously 64 i l l - c h o s e n . This new insight resulted i n the protocol for Ann being revamped by the nursing s t a f f . The authors concluded that continuing i n t e r a c t i o n between patients and s t a f f and the therapeutic environment were the major tools at the nurse's disposal to help patients i d e n t i f y and redefine healthier adaptive-response patterns. Although the authors acknowledge the need to i n d i v i d u a l i z e nursing care, the "generic eating disorder protocol" i s based on a behavioral therapy framework. Therefore, an assumption of t h i s protocol i s that a l l individuals with AN w i l l conform to behavioral therapy p r i n c i p l e s as part of t h e i r treatment. The nursing l i t e r a t u r e i s r i f e with descriptions of general and s p e c i f i c nursing approaches used to care for indi v i d u a l s with AN. Glatter Nusbaum and Drever (1990) conducted a survey of in-patient nursing care approaches for persons with AN on seventeen psychiatric units around C a l i f o r n i a . This survey sought out the opinions of nurses, not patients. The authors concluded that nursing was the mainstay i n carrying out treatment plans with these patients. A l l the respondents i n the study described behavioral r • components to t h e i r programs; the nurses believed that using a behavioral approach, regardless of the type used, was e f f e c t i v e i n putting weight on patients with AN i n the i n -patient setting* General nursing approaches for the treatment of AN were further outlined by McNamara (1982) and Palmer » 65 (1990) who both propound that treatment i s lengthy and complex, requiring a combination of: 1) aggressive medical management; 2) i n d i v i d u a l , group, and family psychotherapy; 3) behavioral management; 4) food-intake management; and 5) n u t r i t i o n a l counseling. A common theme i n the nursing l i t e r a t u r e regarding general nursing approaches i s the nurse-patient r e l a t i o n s h i p discussed by Muscari (1988) and Gray Deering (1987). Muscari advocates three general p r i n c i p l e s that apply to e f f e c t i v e nursing care: knowledge of the condition, e f f e c t i v e patient teaching, and the nurse-patient r e l a t i o n s h i p . Gray Deering (1987) focuses on the complexities of the nurse-patient r e l a t i o n s h i p which she terms the "therapeutic a l l i a n c e " (p. 11). According to Gray Deering, individuals with AN often have a narrow view of the nurses as people whose chief aim i s to make them gain weight — the very thing they< fear the most. Thus, she contends that the in d i v i d u a l perceives the nurse as an enemy, not an a l l y . The author presents case examples that i l l u s t r a t e three phases i n the development of a therapeutic a l l i a n c e and the required nursing approaches for each phase. The phases are labeled: 1)angry/counterdependent, 2) depressed/needy, and 3) approaching/relating. Nursing approaches i n phase one focus on establishing a r e l a t i o n s h i p of t r u s t with the i n d i v i d u a l . They include empathetic l i s t e n i n g , l i m i t s etting/surveillance (devising a treatment 66 contract that minimizes power struggles and promotes consistency), educating individuals about t h e i r condition, and creating dialogue (getting past conversations around food and weight and providing meaningful i n t e r a c t i o n ) . Nursing approaches used during the second phase focus on providing the i n d i v i d u a l with intense support, nurturance, and guidance. The nursing approaches include l i s t e n i n g and feeding r i t u a l s ( l i s t e n i n g and r e f l e c t i n g back the in d i v i d u a l ' s experiences and feelings) and giving support and outreach (the nurse reaches out to the i n d i v i d u a l who does not know how to ask for help). Nursing approaches during the f i n a l phase focus on the therapeutic a l l i a n c e maturing into a cooperative process. Nursing approaches i n t h i s phase include spontaneity and humor, being a role model, and mutual planning (setting goals). The extent to which t h i s has been implemented or evaluated i s unclear. Ultimately, most of the general nursing approaches described i n the nursing l i t e r a t u r e r e f l e c t the conventional treatment approaches described i n the subsequent section. S p e c i f i c nursing approaches that each provide d i r e c t i o n for a p a r t i c u l a r aspect of AN are described by Butts Krakoff (1991), Delaune (1991), Fontaine (1991), Korb (1994), Staples and Schwartz (1990) and Sutton Edmands (1986). Butts Krakoff highlights the unique aspects of assessment required by the nurse when an i n d i v i d u a l has Insulin-Dependent Diabetes • , 67 M e l l i t u s . Using the nursing process, Delaune describes strategies for e f f e c t i v e l i m i t s e t t i n g since i n d i v i d u a l s with AN are perceived to be manipulative and d e c e i t f u l , which seems to r e s u l t i n power struggles. Fontaine provides strategies to nurses for i n i t i a l and ongoing assessment rela t e d to sexuality and sexual behavior since i n d i v i d u a l s with AN often suff e r from concurrent sexual problems. Korb (1994) used self-reported questionnaires to e s t a b l i s h that women with AN describe negative impressions of t h e i r mothers' l i v e s . Korb concluded that perceptions of a maternal r o l e model may be related to AN and should be c a r e f u l l y considered by the nurse with respect to i n d i v i d u a l i z e d treatment. Staples and Schwartz, and Sutton Edmands describe out-patient support groups they formed for individuals with eating disorders to provide t r a n s i t i o n a l support from the hos p i t a l to the community set t i n g . S p e c i f i c nursing approaches for AN tend to r e f l e c t t r a d i t i o n a l nursing p r i n c i p l e s such as addressing the psychosocial problems of the i n d i v i d u a l and conveying empathy to the i n d i v i d u a l ; they r e l y less on conventional approaches such as behavioral therapy and pharmacological therapy. Most nurse experts agree that in-patient treatment becomes necessary when potential l i f e - t h r e a t e n i n g behaviors of purging and r e s t r i c t i n g food need to be monitored and interrupted (Conrad, Sloan & Jedwabny, 1992). However, the 68 trend toward prevention, promotion and t e r t i a r y care within the community i s gaining wider acceptance (McNamara, 1982). Further, experts contend that i n i t i a l contact sets the tone for the development and resolution of successes within therapy (Love & Seaton, 1991). Lehmann (1982) comments that nurses are i n a v i t a l p o s i t i o n i n the community: they run parent groups, and they are i n a l l the schools, community health centers, c l i n i c s , p e d i a t r i c wards, and emergency units. Hence, they can be the f i r s t to detect a problem. Chit t y (1991) writes pf the primary prevention r o l e of the nurse i n eating disorders i n s i s t i n g that i f nurses are to move from a treatment mode to a prevention mode, they must expand t h e i r attention from in d i v i d u a l and families as the units of treatment to the entire community as the unit of treatment. She asserts that nurses can take the i n i t i a t i v e i n important prevention a c t i v i t i e s (which to date have not been attempted) such as integrating schools, the helping professions, the media, business, and families i n a coordinated e f f o r t to prevent AN. According to the author, when the community, rather than the i n d i v i d u a l or family i s i d e n t i f i e d as the unit of intervention, health programs usually i d e n t i f y clusters of a t - r i s k populations and target them for sp e c i a l educational e f f o r t s . A t - r i s k populations for the development of eating disorders have been i d e n t i f i e d as adolescent g i r l s , dancers, f l i g h t attendants, gymnasts, i c e 69 skaters, models, wrestlers, and male homosexuals (recent studies indicate that gay men may seek treatment for eating f disorders more often than heterosexual men, therefore i n f l a t i n g the numbers of gay males with AN [O l i v a r d i a , Pope, Mangweth, and Hudson, 1995]; while lesbians have a decreased incidence of eating disorders than do heterosexual women [Bordo, 1993]). However, Chitty cautions that Anorexia Nervosa and Bulimia Nervosa are so pervasive i n society that attempts to deal with a t - r i s k groups would neglect thousands of people with eating disorders who do not f a l l into any of the i d e n t i f i e d high-risk groups. Thus, she asserts that evaluation of prevention programs i s es s e n t i a l to guarantee the refinement of preventative e f f o r t s over time. Compared to other d i s c i p l i n e s , there i s a dearth of nursing l i t e r a t u r e that not only emphasizes the importance of prevention programs i n the treatment of AN, but provides tangible and pragmatic ideas to prevent AN. Yet, the extend to which the r o l e of the nurse i n prevention has been forthcoming appears li m i t e d . A subtle thread that i s conveyed throughout the nursing l i t e r a t u r e i s that power struggles e x i s t between nurses and i n d i v i d u a l s with AN (Conrad, Sloan & Jedwabny, 1992; Gray Deering, 1987; Muscari, 1988). Sanger and Cassino (1984) write "given the anorexia nervosa patient *s ^ f i e r c e desire for control, i t i s not surprising when treatment programs 70 flounder on "power struggles" (p. 31); Whether t h i s theme i s fact or speculation i s unclear as there i s no research to va l i d a t e i t . Yet, Sanger and Cassino describe t h e i r need to adopt a "hands o f f " behavioral modification approach to nursing care that evolved through t r i a l and error because of power struggles that ensued between patients and the s t a f f , and even amongst s t a f f . The extent to which the power struggle i s a problem for patients and nursing s t a f f a l i k e i s unclear. Yet, i t does appear to be a concern as r e f l e c t e d i n the l i t e r a t u r e . Unlike bodies of l i t e r a t u r e from other d i s c i p l i n e s , the nursing l i t e r a t u r e indicates by a subtle nuance the notion that nurses' attitudes about food and t h e i r own body image are continually c a l l e d into question when caring for women with AN (Love & Seaton, 1991). For example, Harding (1985) warns that nurses working with persons who have AN must come to terms with t h e i r own attitudes about eating disorders and they must possess p o s i t i v e body images. Gray;, Deering and Niziolek (1988) assert that, since many nurses are young women, they may be p a r t i c u l a r l y e f f e c t i v e role models for persons receiving treatment for AN. McNamara (1982) goes so far as to recommend that charge nurses consider the age and background of patients and t h e i r potential nurses when determining patient assignments. Further, she asserts that indiv i d u a l s may f e e l threatened by overbearing and/or 71 overweight s t a f f . So, she suggests that a younger nurse who i s closer to the sufferer's actual age (and weight) may be able to es t a b l i s h a closer r e l a t i o n s h i p . Overall, she concludes that the determining factor i n the nurse-patient assignment l i e s i n the way the nurse feels about herself and her appearance (p. 36). The extent to which nurses' attitudes towards food and t h e i r bodies influence the care they provide to women with AN i s unclear. If there i s a need to document such viewpoints, i t may be because nursing i s a female-dominated profession and most sufferers of AN are women. However, t h i s does not explain why female psychologists, p s y c h i a t r i s t s , and n u t r i t i o n i s t s have not been as fo r t h r i g h t i n expressing t h e i r viewpoints. Generally, nurses look outside the d i s c i p l i n e to provide d i r e c t i o n and guidance for nursing care to persons with AN. The irony i s that nurses comprise over f i f t y percent of health care providers and manage over half of the 29 b i l l i o n d o l l a r s spent on health care i n Canada (Shannon, 1994). Yet, nurses have not devised, implemented, evaluated, and published a treatment plan that i s h o l i s t i c , comprehensive, or e f f e c t i v e for the prevention or treatment of AN. Gaining a sound understanding of the conventional treatment experience of women with AN, based on t h e i r subjective responses to the experience, could provide a foundation upon which nurses can es t a b l i s h general guidelines for nursing care, provide 72 i n d i v i d u a l i z e d support, and est a b l i s h evaluative components to care. Viewpoints Of Consumers Consumers of health care are increasingly demanding more e f f e c t i v e treatments with the a b i l i t y to play a more decisive r o l e i n t h e i r care (Province of B r i t i s h Columbia, 1991). Reviewing anecdotal l i t e r a t u r e o f fers providers of care insight into e x i s t i n g treatment approaches from the perspectives of the c l i e n t and t h e i r s i g n i f i c a n t others who have experienced the approaches. Sheila MacLeod (1981) recounts the f i r s t time she r e s t r i c t e d her intake: she was thirteen and she continued to r e s t r i c t for four years. She vehemently c r i t i c i z e s treatments for AN such as electro-convulsive therapy (ECT), behavioral techniques, and programs that emphasize weight res t o r a t i o n arguing that her own recovery was f a c i l i t a t e d by a s e l f - h e l p group for women with AN. According to MacLeod, the s e l f - h e l p group provided her with an atmosphere of unconditional acceptance. MacLeod advocates that any sort, of treatment for AN must take into account the circumstances of the p a r t i c u l a r woman, her age, the stage her condition has reached, the length of her i l l n e s s , her family, and her s o c i a l s i t u a t i o n . Catherine Dunbar l o s t her seven year b a t t l e to AN at the age of twenty-two years. Her mother (Dunbar, 1986) narrates her daughter's experiences both i n and out of hospital for 73 the treatment of AN. They included undergoing behavioral therapy, sedation, involuntary c e r t i f i c a t i o n , and forced feedings using a naso-gastric tube. Dunbar notes that, l i k e so many women with AN, Catherine's main goal was to meet her target weight and then get discharged from the programs so that she could starve herself. Her experiences of conventional treatments did nothing, obviously, to change her l i f e . Although ten years have lapsed since Catherine's death, and although many s i m i l a r deaths have occurred, the treatment that she received for AN continues today. Waskett (1989), a therapist, i l l u s t r a t e s how AN can be treated i n a humanistic and e f f e c t i v e manner. She claims to have provided unconditional support and a l i s t e n i n g ear for Jenny who had AN. S p e c i f i c a l l y , she never discussed weight or food with Jenny even though she was cachexic and emaciated. Instead, during the weekly sessions, Waskett b u i l t a re l a t i o n s h i p of t r u s t and rel e n t l e s s encouragement with Jenny. Sometimes Jenny's parents and her husband went to see Waskett to understand why the old, amiable Jenny was changing. They were encouraged to understand why the family structure should not f e e l threatened by the new, challenging and confident Jenny. Today, Jenny has an eighteen-month old baby and a strong marriage; she i s free of an l i f e s t y l e that revolves around AN. 74 The Ardells (1985) chronicle t h e i r journey as mother and daughter through the daughter Maureen's diagnosis, therapy, and recovery from AN. Two aspects of t h i s biography are important. F i r s t , the lack of t h i s family's i n c l u s i o n i n the care for a loved one undergoing therapy for AN both i n the hospital and community setting i s i l l u s t r a t e d . When the mother discusses her perception of the sociad stigma attached to AN, and the lack of understanding that her friends and family had regarding her daughter's condition, she demonstrates how l i t t l e help was offered by the health care team i n dealing with her own feelings and perceptions. Further, she found i t d i f f i c u l t to know how to help her daughter. Her sole refuge was i n reading s e l f - h e l p books. Second, the power struggles that exist between nurses and patients and amongst nurses and physicians i n the ho s p i t a l s e t t i n g i s well documented. As Maureen appeared to play one nurse against the other, so to did the nurses attempt to supersede each other's authority to 'know' the one r i g h t way to care for Maureen. From Maureen's perspective, nursing care was f u l l of inconsistencies and misunderstandings. She often referred to discrepancies i n guidance that she received from her 'primary' nurse and other nurses. Furthermore, while Maureen f e l t nurses were attempting to become more involved i n her care, she also found them blunt and untrustworthy at times. She describes an incident i n which she returned from 75 an outing to f i n d that her personal belongings had been moved to another room without any n o t i f i c a t i o n or explanation. The i n t e r p r e t a t i o n of an individual's mental state can influence the orientation by which the nursing profession defines i t s nursing care. For Rachel Smith (1992), a twenty-year-old third-year nursing student with AN, counseling was the treatment that helped her. Rachel states she f e l t the need to please people, whatever the cost. She wanted to be the perfect person: a perfect daughter, s i s t e r , g i r l f r i e n d , and f r i e n d . Rachel started to r e s t r i c t her food and to exercise obsessively when she f e l t unable to control her r e l a t i o n s h i p s , school, or any impending change. She contended that "food i s my enemy, food i s my c o n t r o l . Food i s more frightening to me than death i t s e l f . I'd rather die than eat" (p. 33). Rachel claimed that she fully^understood what she was doing; however, she could not stop. Through counseling she had come to terms with the fact that the world was not perfect nor was she. Rachel emphasized that she was not b i o l o g i c a l l y i l l or mad. Thus, t h i s anecdote reveals that the mental state of women with AN i s variable; the interpretations then of an individual's mental state i s worth considering when providing nursing care. The s t o r i e s of Sheila, Catherine, Maureen, Jenny, and Rachel reveal the i n d i v i d u a l nature of t h e i r experiences with the treatment approaches available to them for AN. Sheila and Catherine's s t o r i e s suggest that conventional treatments were not appropriate for them. Rachel's story reveals that the mental state of a woman with AN may have everything to do with her motivation and w i l l or a b i l i t y to recover. Jenny's story demonstrates that women with AN can recover, but recovery i s contingent on the type and sett i n g of the treatment. Maureen's story reveals that power struggles between d i s c i p l i n e s can impact upon the sufferers negatively and that the inc l u s i o n of s i g n i f i c a n t others i n the treatment program can impact p o s i t i v e l y upon the suffe r e r s . These st o r i e s i l l u s t r a t e that each individual's experience of AN i s unique, responding to unique needs and perceptions of the world. Whether AN i s a mental i l l n e s s , a disease, a product of s o c i e t a l conditioning, a condition, or a disorder i s s t i l l open to int e r p r e t a t i o n . A l l aspects of treatment for AN are under scrutiny by consumers. In documenting her own experiences for the treatment of AN, Gibson (1983) states " the patient i s coerced into gaining a large amount of weight i n a very short time and scant attention i s paid to her mental state" (p. 64). Yet, Kinoy, mother of an AN sufferer, and founder of the American Anorexia/Bulimia Association writes " i n choosing a therapist, rapport, t r u s t , and knowledge of the i l l n e s s are more important than a p a r t i c u l a r approach or school of thought" (Kinoy, M i l l e r & Atchley, 1984, p. 12). Consumers 77 have c r i t i c i z e d and commended treatment approaches for AN, t h e i r use, and the settings i n which they take place. S t i l l , i t i s unclear whether ind i v i d u a l concerns undermine any consistency for nursing care, or consistency for nursing care i s undermined by ind i v i d u a l concerns. An extensive review of the l i t e r a t u r e reveals that many aspects of the treatment experience by consumers of AN treatment are poorly understood. However, research into the subjective experience of women with AN i s increasing. A study of an emic perspective of one woman with AN conducted by Davidson and Cosgrove (1991) was very revealing. In a case study, they asked the woman to "describe [her] experiences of not eating when hungry" (p. 91). Based on her responses, they concluded that the subject's experience with AN was d u a l i s t i c i n nature: she described a world she shared with others and a "pathological world of d i e t i n g and thinness" (p. 99), a world she experienced alone. In a si m i l a r study by Santopinto (1988), two women with AN were asked "What i s i t l i k e to l i v e the experience of the rel e n t l e s s drive to be ever thinner?" From t h e i r answers, Santopinto yielded three concepts that express the experience of AN: "withdrawing-engaging, persistent struggle, and imaged s e l f " (p.33). By inq u i r i n g about these women's experiences with AN, these authors t learned something of the i s o l a t i o n that women with AN experience. These studies reveal that while subjective 78 experiences have been documented by nurses for AN, the res u l t s do not ac t u a l l y address the treatment experience of AN. The treatment experience must be documented i f nurses are to understand the perceptions of sufferers and provide comprehensive nursing care. The intent of the proposed study i s thus to describe the treatment experience of women with AN for the purpose of improving nursing care. The benefits of conducting a research study of the treatment experience of women with AN i s i l l u s t r a t e d i n a study conducted by Meyers (1989) i n which n a t u r a l i s t i c inquiry was used to investigate the occupational therapy experience of a woman with AN. In the study, the woman revealed those aspects of her treatment she considered most relevant. This study provided the occupational therapy s t a f f (at the f a c i l i t y where the treatment occurred) with valuable insight and understanding into the various treatment modalities given to a woman with AN. For example, i n response to stated feelings of the woman's lack of control i n her l i f e , the occupational therapist was able to i n v i t e the woman to "task groups", such as groups for c r a f t s , which provided an environment to practice more mature s k i l l s and the opportunity to gain control over her l i f e i n a p o s i t i v e manner. 79 Summary This review of the scholarly and lay l i t e r a t u r e reveals that conventional treatment approaches (either i n the hospital or community setting) often do not influence the long-term course of AN, and the outcomes of treatment are ra r e l y evaluated by any d i s c i p l i n e , least of a l l by nursing. Those approaches that are evaluated tend to be based on the weight gain that women at t a i n rather than on recovery from AN symptoms such as feelings of unworthiness, poor self-esteem and behaviors such as binging, purging, and r e s t r i c t i n g . Consequently, establishing the success rate of conventional treatment approaches for women with AN remains d i f f i c u l t . Conventional treatments have been almost e n t i r e l y guided by c l i n i c i a n opinion rather than by research. Research that has been published by most d i s c i p l i n e s i s lar g e l y d e s c r i p t i v e , retrospective, or uncontrolled. Moreover, i t i s from the perspective of the researcher rather than the consumer of care. C r i t i c i s m s of conventional treatment approaches from consumers are extensively documented i n the l i t e r a t u r e . In many cases, the effectiveness of unconventional treatment approaches i s unsubstantiated; i n others, evaluative research i s l i m i t e d . Most of the nursing publications take the form of narratives or descriptions of exi s t i n g treatment approaches based on conventional treatments. No discrete and comprehensive nursing perspective exists that could provide 80 guidance to nurses caring for women with AN i n any s e t t i n g . Given t h i s backdrop, the need to research the conventional treatment experience of women with AN i s evident i f nursing care i s to be comprehensive, humanistic, h o l i s t i c , and e.ffective. The goal of t h i s l i t e r a t u r e review was to put the present study into the context of the exi s t i n g l i t e r a t u r e . The objective of t h i s study i s to describe the treatment experience of women who have AN and to generate i n s i g h t into and understanding of the phenomenon. As indicated i n Chapter One, the thematic descriptive approach was chosen as the most appropriate approach to guide t h i s exploration. The following chapter w i l l describe t h i s method as i t was used i n t h i s research investigation. Chapter Four i s a presentation of the findings. In chapter Five, a discussion of the findings i s presented. Chapter Six suggests recommendations for future research as well as the implication of the findings on nursing research, practice, education, and s o c i a l p o l i c y . 81 CHAPTER THREE: RESEARCH METHODOLOGY Introduction In t h i s chapter, I present the research approach I u t i l i z e d to study how women describe t h e i r experience for the treatment of AN. S p e c i f i c a l l y , I w i l l explain the d i r e c t i o n that t h i s approach provided me with respect to the s e l e c t i o n of the informants, the data c o l l e c t i o n techniques, and the data analysis procedures. F i n a l l y , I w i l l explain the c r i t e r i a that I used to estab l i s h r i g o r , and I w i l l describe the e t h i c a l considerations of th i s study. Approach Discerned From the Research Question The approach to t h i s study was discerned from the research question: How do women describe t h e i r conventional treatment experience for AN? My intent i n choosing the subsequent approach was to describe and explain the shared experiences of the informants while a n t i c i p a t i n g the i n d i v i d u a l i t y of each informant's experience. Because a study of th i s nature sought to describe the subjective experiences of the informants, some scholars would have suggested I consider a "pure" descriptive design i n which I adhere to a method using content analysis to answer t h i s question. However, t h i s was not appropriate for my research question since I view content analysis more as a mechanistic technique than as a humanistic method. Indeed, I believe content analysis to be a technique which separates 82 the researcher from the humanistic and i n t e r a c t i v e aspects of the data (Sandelowski, 1993; Stern, 1994). As Giorgi (1985) asserts, "In i t s c l a s s i c sense, content analysis demands that the researcher investigate a phenomenon within the constraints of a p r i o r i adoption of natural s c i e n t i f i c c r i t e r i a as f i n a l a r b i t e r s of a phenomenon" (p. 14). C l e a r l y , a "pure" descriptive method using content analysis would d i r e c t me away from the humanistic i n t e r a c t i o n between myself and the informants' descriptions of t h e i r experiences and toward a focus on the mechanistic aspects of the data per se. Thus, I attempted to avoid being entrapped into a mechanistic analysis of the phenomenon. From the words I chose to a r t i c u l a t e my research question, one might construe that I attempted to capture the e i d e t i c or e s s e n t i a l essence (Cohen & Ornery, 1994) of women's conventional treatment experience for AN. Some scholars might argue that a t r a d i t i o n a l q u a l i t a t i v e method such as phenomenology would best be suited to answering my research question because phenomenology "attempts to d i s c l o s e the es s e n t i a l meaning of human endeavors" (Bishop & Scudder, 1991, p.5). However, the phenomenological method requires that the researcher interpret the philosophical underpinnings of the phenomenon for i t s own sake through a process of r e f l e c t i o n and imagination (Oiler, 1986). Moreover, "description, analysis and'explanation are pointedly 83 excluded" from the phenomenological method (O i l e r , 1986, p. 71). A t r a d i t i o n a l method such as phenomenology was therefore inappropriate and inadequate to answer my research question f u l l y ; i t would guide me only to capture the meaning of the informants* experiences for i t s own sake. Conversely, describing the informants' experiences could provide nurses with tangible knowledge and understanding to provide improved patient care. It i s my view that the nursing profession i s an applied science and a practice d i s c i p l i n e . Therefore, nurse researchers ought to focus on generating and grounding sound, pragmatic, and tangible observations upon which nursing interventions can be deduced d i r e c t l y to improve patient care. Thorne notes that "questions inherent to nursing science are distinguished, revealing major departures from the process, product, and even purpose of the o r i g i n a l inquiry" (1991, p. 178). Thus, the nature of my research question focused on concrete instances of women's treatment experiences for AN. In c o l l e c t i n g data, I discerned s u f f i c i e n t themes that constituted the informants' common experiences through a process of description, understanding, c l a r i f y i n g , and explaining. In contrast to the confines of a t r a d i t i o n a l methodology i n which the human condition i s researched for i t s own sake, I translated these themes into p r a c t i c a l implications so that nurse p r a c t i t i o n e r s , educators 84 and p o l i c y administrators might u t i l i z e and apply the shared experiences of the informants to in d i v i d u a l sufferers within the hospital or community setting. i Thus, I used a thematic descriptive approach to answer the research question, "How do women describe t h e i r conventional treatment experience for AN?" I presumed the following assumptions u t i l i z i n g t h i s approach. F i r s t , as previously indicated, the lack of current knowledge as evidenced i n the l i t e r a t u r e review precluded the use of a th e o r e t i c a l base for t h i s study (Brink & Wood, 1989). Therefore, t h i s study was not directed by a formal conceptual framework. Second, an inductive and in t e r a c t i v e process of inquiry between myself and the informants was u t i l i z e d to discern common themes. F i n a l l y , the themes that I discerned from the data r e f l e c t e d the contextual and subjective descriptions that the informants ascribed to t h e i r experience. It was d i f f i c u l t to describe data c o l l e c t i o n techniques and methods of analysis before the research process begun. The reason was that I had a limited amount of "control" over the precise nature of the interviews that I conducted because I used open-ended questions. In addition, the best method to analyze the data did not unfold u n t i l c o l l e c t i o n began. Also, I anticipated that I might need to make adjustments i n response to ongoing data c o l l e c t i o n and analysis (May, 1989). 85 Indeed, the sign i f i c a n c e of the research findings was hard for me to j u s t i f y u n t i l a certa i n l e v e l of analysis was reached ( F i e l d & Morse, 1985). I recognized- ;that I made these decisions as the study was constructed. However, I ensured that the research was auditable as I a r t i c u l a t e d the intent and the plan that I used to guide my decision making. I also planned to make e x p l i c i t the reasoning behind any departures from the general approach i n my written report, and consider any implications these may have had upon the findings. Method S l u r r i n g versus Methodological Orthodoxy The emergent approach for t h i s study was proposed within the context of an exi s t i n g debate among nurse scholars. That i s , nurse scholars are currently debating whether q u a l i t a t i v e methods should be r i g i d l y adhered to so that researchers do not v i o l a t e the assumptions of a l l q u a l i t a t i v e methods, or whether q u a l i t a t i v e methods should be vaguely described a p r i o r i data c o l l e c t i o n i n order to give researchers the freedom to develop t h e i r own s t y l e . Contrary to the emergent method that I chose, proponents of "orthodox t r a d i t i o n s " argue that q u a l i t a t i v e researchers should r i g i d l y adhere to the tenets of a s p e c i f i c method i n order to have an auditable and credible study (Morse, 1989). Conversely, c r i t i c s of "orthodox t r a d i t i o n s " deliberate the a p p l i c a b i l i t y of such methods to the questions of nursing science and suggest that the requirements for methodological orthodoxy could include 86 "a uniquely nursing approach to q u a l i t a t i v e inquiry" (Thorne, 1991). In my opinion, the nature of the research question was best answered using the thematic descriptive approach because of i t s p r a c t i c a l a p p l i c a b i l i t y for nursing p r a c t i c e . Some nurse researchers are u t i l i z i n g more than one q u a l i t a t i v e method at a time and not e x p l i c i t l y s t a t i n g the assumptions of t h e i r approach. Baker, Wuest, and Stern (1992) state that q u a l i t a t i v e data c o l l e c t i o n procedures and methods of analysis should be e x p l i c i t and consistent with the underlying assumptions of the s p e c i f i c approach selected to ensure r i g o r . Morse (1989) argues that researchers are mixing s p e c i f i c aspects from various methodologies to formulate one way i n which to conduct t h e i r research. As a r e s u l t , methods of q u a l i t a t i v e research are becoming increasingly unstructured. She i l l u s t r a t e s the case i n point using a research paper t i t l e d "A Combined Qualitative Methodology for Nursing Research" by Swanson-Kauffman. Swanson-Kauffman states "the methodology used evolved as [she and her] study progressed. It i s a somewhat unique blending of phenomenological, grounded theory, and ethnographic methodologies" (1986, p. 59). In Morse's opinion, Swanson-Kauffman exemplifies a nurse researcher who eludes the tenets of each method by combining methods. This practice i s known as method mixing (Morse, 1989) or method s l u r r i n g (Baker, Wuest & Stern, 1992). Morse and Baker, Wuest and Stern 87 declare that researchers who practice method mixing/slurring are b l u r r i n g d i s t i n c t i o n s between various q u a l i t a t i v e approaches by combining t h e i r methodological prescriptions e c l e c t i c a l l y . While these authors contend that researchers v i o l a t e the assumptions of data c o l l e c t i o n techniques and methods of analysis of a l l q u a l i t a t i v e methods when they s l u r methods, opinions to the contrary exist demonstrating that researchers who do use methodological variations do so i n order to research aspects of human nature of p a r t i c u l a r i n t e r e s t to nurses who want to d i r e c t l y improve patient care. C r i t i c s of the requirement to observe "orthodox t r a d i t i o n s " acknowledge that q u a l i t a t i v e researchers are doing legitimate research for which there i s no name (Stern, 1994). The reason t h i s research i s being done, i s that i n many cases, nurse researchers are required to modify the methods that they use i n order to answer the research question that they have formulated. Dreher (1994) states that the nature of nursing phenomena often require nurse researchers to u t i l i z e a m u l t i p l i c i t y of methods. As a r e s u l t , nurse researchers frequently and necessarily deviate from the c l a s s i c descriptions of s p e c i f i c strategies within the q u a l i t a t i v e paradigm. Indeed, Thorne (1991) challenges the " f i t " that supporters of orthodox q u a l i t a t i v e methods have regarding t h e i r purpose, emphasis, context, perspective, and relationships for the p r a c t i c a l a p p l i c a b i l i t y to nursing 88 inquiry. Further, she analyzes the p r a c t i c a l a p p l i c a b i l i t y of orthodox q u a l i t a t i v e research t r a d i t i o n s to nursing science by discerning some of the d i s t i n c t i o n s that might necessitate methodological variations for nursing's purpose. Thorne concludes that "nursing science departs from the larger assumptions underlying the various q u a l i t a t i v e methods and i s d i s t i n c t i n i t s (a) central values, (b) capacity for ambiguity, (c) complexity, and (d) insistence on p r a c t i c a l a p p l i c a t i o n " (p.191). Thus, the design that was a r t i c u l a t e d for t h i s study was an approach developed i n the context of an as-yet-unresolved methodological debate i n the nursing research l i t e r a t u r e . This research approach did not evolve i n a vacuum. Nor do I believe that I lent "support to the minions of mediocrity" (Stern, 1994, p. 214) who s l u r methods. This approach was a q u a l i t a t i v e one i n which common themes were derived from semi-structured interviews and data analysis using a framework modified from F i e l d and Morse (1985) and Giorgi (1985). I derived my research question i n response to the perceived need to describe and explain the effectiveness of conventional treatment approaches that women undergo for AN, a perception well evidenced i n the l i t e r a t u r e review. The nature of an evolving q u a l i t a t i v e approach was j u s t i f i e d because i t provided a guide by which I was able to discern common themes that w i l l have d i r e c t and p r a c t i c a l implication 89 for the nursing profession and thus answer the research question. Informant Selection I anticipated that the AN population may be reluctant to pa r t i c i p a t e i n t h i s study. Indeed, two women dropped out of my t r i a l research project without explanation (conducted for a course, Nursing 522, December, 1993). In addition, women with AN tend toward mood disorders and cognitive impairments which could have impeded t h e i r a b i l i t y to volunteer (Bock, 1992b). For these reasons, I combined two types of sampling techniques to p o t e n t i a l l y increase the success i n sampling: t h e o r e t i c a l techniques and nominated techniques. Theoretical techniques involve using samples that are composed of informants who are best able to r e f l e c t and a r t i c u l a t e t h e i r experiences of the phenomenon under study (Morse, 1989). I took the opportunity to assess whether the informants met t h i s c r i t e r i o n during the telephone conversation i n which I t o l d prospective informants about the study. Nominated techniques involve using samples that are obtained by e l i c i t i n g the support and assistance of a single informant already i n the study to a s s i s t with the se l e c t i o n of another informant and are also known as snowball sampling (Morse). I en l i s t e d the assistance of a woman who had AN. She had been ho s p i t a l i z e d for the treatment of AN and had access to women 90 i n the AN community. This woman was the single informant i n a phenomenological t r i a l project about AN that I conducted i n December, 1993. These techniques insured the success of the sampling process and no d i f f i c u l t i e s were encountered i n obtaining informants. I interviewed f i v e informants for t h i s study and I was able to est a b l i s h s u f f i c i e n t v a r i a t i o n i n the data to understand the nature of s p e c i f i c common themes that the informants described. I acknowledge that the small group i s a pot e n t i a l l i m i t a t i o n of the study. Cha r a c t e r i s t i c s of Informants The s e l e c t i o n of informants was established based on the following c r i t e r i a . The informants were required to: 1) be female; 2) have been treated for AN at least once i n a p r o v i n c i a l l y approved i n s t i t u t i o n ; 3) be eighteen years of age or older; 4) have been able to communicate f l u e n t l y i n English; 5) currently have AN or be recovering from AN; and 6) have not been hospitalized at the time of p a r t i c i p a t i o n . There i s l i t e r a t u r e to indicate that women who are hos p i t a l i z e d with AN are often heavily sedated and/or su f f e r i n g from side e f f e c t s of malnourishment such as i r r i t a b i l i t y , anxiety, impaired cognition and/or depression (Love & Seaton, 1991). Interviewing hospitalized women could p o t e n t i a l l y have led to e t h i c a l issues such as informants consenting to the study while under duress. Furthermore, I was concerned about the a b i l i t y of women i n the immediate 91 s i t u a t i o n of acute i l l n e s s to r e f l e c t on and describe t h e i r experiences. Morse (1989) states that demographic c h a r a c t e r i s t i c s have l i t t l e s i g n i f i c a n c e i n q u a l i t a t i v e research because they are i n s u f f i c i e n t indicators to i d e n t i f y the informants. Rather, she believes that i t i s important to describe the i n d i v i d u a l c h a r a c t e r i s t i c s of each informant and the context i n which they are researched. However, consistent with the feminist perspective, I have included s p e c i f i c demographic c h a r a c t e r i s t i c s such as race, employment, and educational l e v e l to explicate any ethnocentricity and classism that i s inherent i n t h i s study (DeMarco, Cambell, & Wuest, 1983). I have included r e l i g i o n based on the case studies conducted by Giles-Banks (1992) observing that s o c i o c u l t u r a l factors may contribute to AN. There i s some new l i t e r a t u r e to suggest that a decreased incidence of AN exists amongst the lesbian population (Bordo, 1993) and I have therefore included the question of sexual preference of the informants i n t h i s study. Further, there i s a paucity of l i t e r a t u r e l i n k i n g sexual molestation to eating disorders and I have therefore addressed t h i s question (Love and Seaton, 1991). I have included the type of AN that the informant has i n order to discern the p o s s i b i l i t y of any observable differences i n the experiences of informants who are r e s t r i c t o r s from the informants who are bingers. 92 A l l of the informants were Caucasian women between the ages of twenty-three and f i f t y - o n e . Four had. been born and raised i n Canada, one had been born and raised i n England, immigrating to Canada i n her twenties. A l l of the informants had completed a high school equivalency education. Four of the informants had a post secondary education and two of the informants had u n i v e r s i t y degrees. Three informants claimed to be agnostic, one informant had been raised', i n an "oppressive Catholic home" which she explained had contributed to g u i l t feelings leading to her AN. Another informant had been raised i n an evangelical environment and was married to a minister. She denied that her r e l i g i o n played a r o l e i n her AN. Three informants had never married, one informant was divorced and a l l were heterosexual. Two of the informants had been sexually molested as children and one informant had been a p r o s t i t u t e . Two informants had c h i l d r e n — t h e i r ages are twenty-two and twenty-three and three years respectively. Three of the informants described themselves as r e s t r i c t o r s and two bingers. Data C o l l e c t i o n Techniques The hallmark of s c i e n t i f i c work according to May (1989) i s the a b i l i t y of the researcher to explicate precise description of data c o l l e c t i o n procedures. Thus, each informant received an Informant Information Letter 93 (Appendix C) from the resource woman with AN that I previously mentioned or from another informant. The po t e n t i a l informant then contacted me by telephone. During our telephone conversation, I established that the informant had been treated for AN within three years and that she was able to r e f l e c t on and describe detailed e x p e r i e n t i a l information about her treatment experience (Morse, 1989). A l l of the women who c a l l e d met the sele c t i o n c r i t e r i a . Therefore, I set up an interview with an informant either at her home or at a location that she deemed convenient. Three of the interviews took place at the informants' homes; another two were conducted at the community t r a n s i t i o n homes where informants were l i v i n g . At the beginning of our meeting, I presented the informant with a one time only $20.00 honorarium p r i o r to the interview (to ensure that she did not fe e l obligated to s i t through the interview u n t i l she received the money) as a nominal expression of my appreciation for p a r t i c i p a t i n g i n th i s study. Next, I explained the nature of the study and c l a r i f i e d any questions that she might have. In addition, I obtained written consent from her (Appendix D). I t o l d the informant that I would contact her throughout the study i n order to v e r i f y my interpretations of the tr a n s c r i p t s or to have her aff i r m or refute my interpretations. Subsequently, I turned on the audio-tape and recorded the conversation. The 94 audio-taped discussion lasted from one to two hours and followed a format as outlined i n the interview guide (Appendix E). Two of the follow-up interviews were conducted i n person and the remainder were telephone interviews. Interview techniques included open-ended questions, grand tour questions (e.g., "please describe for me what i t was l i k e for you to be treated for Anorexia?"), and contrast or comparison questions. The interview guide followed a format leading from general to s p e c i f i c questions. An interview guide was necessary because i t ensured some consistency between the interviews. In addition, i t established the s a l i e n t parameters of the study while s t i l l allowing for f l e x i b i l i t y i n depth and scope (May, 1989). I constructed the sequencing and content of the questions to allow for f l e x i b i l i t y with respect to the d i r e c t i o n that the interviews took. In addition, I designed the questions to r e f l e c t the problem statement, the research question, the l i t e r a t u r e review, and the research approach. As informants s t o r i e s began to unfold, I required less d i r e c t i o n from the interview guide and often only spoke to c l a r i f y points raised by informants. Interviews were concluded when an informant's story began to repeat or when an informant e x p l i c i t l y stated that she had nothing else to say. A l l informants desired to o f f e r "one l a s t comment" or "piece of advice for nurses" when asked i f they had anything else to say before the interview 95 was terminated. Consequently, an interview often lasted two hours with the later part generating "rich" data. One explicit deviation was made from the general interview guide after the f i r s t interview was conducted. Specifically, the mother of the f i r s t informant telephoned me to request that I include in this study a section that explores the extent to which families are included in the treatment for AN; she indicated to me that she and her family had not been included or encouraged to participate in many of the treatments that her daughter had received. For this reason, I discussed with the subsequent informants the extent to which their families were included or encouraged to partake in the various treatments they had received. Data Analysis I began transcription and data analysis as soon as the f i r s t interview was conducted. Woods and Catanzaro (1988) note that the researcher must decide what units of analysis to employ in a given study whether i t be words, themes, or time-and-space. My goal was to describe sufficient themes that constitute the conventional treatment experience of women with AN. For the purpose of this study, themes are defined as sentences about some fact which have more meaning than the words they are comprised of (Woods•& Catanzaro). I used an approach adapted from Field and Morse (1985) and Giorgi (1985) as a guide for my data analysis. In the 96 t r i a l project that I conducted i n December, 1993, I found that the s p e c i f i c approach that I used unfolded as I began to go over the t r a n s c r i p t s . Therefore, I was f l e x i b l e and did not conclude the best approach to analyze the data u n t i l data c o l l e c t i o n began (May, 1989). 1) Transcribe Interviews: I transcribed a l l interviews myself i n order to hear the informant's voice, her emphasis on words and the i n f l e c t i o n of her voice, to get a sense of what the informant was conveying ( F i e l d and Morse; G i o r g i ) . I l e f t a 5-inch margin to the l e f t of the text i n order to record i n i t i a l and ongoing commonalities or differences amongst informants. 2) Method of Coding: I broke the text down into manageable categories since I was not able to analyze the'entire \ • • • text simultaneously (Giorgi). I used colored pens and a r u l e r to form categories ( F i e l d and Morse), and I recorded the categories of the images evoked as broadly as possible into a journal. 3) Category C l a s s i f i c a t i o n : My s p e c i f i c aim was to discriminate and delineate towards smaller categories. I discerned the categories within the context i n which they were described by the informants. I did not define the categories as elements, the d e f i n i t i o n of which implies that one builds on the other eventually forming the whole (G i o r g i ) . Using a cut and paste method, I sorted -9 7 categories into smaller, discriminate categories that were context laden ( F i e l d and Morse; G i o r g i ) . 4) Formulating and Linkage of Themes: I made the t r a n s i t i o n from text to categories to themes through a process of i n t e r a c t i o n and constant c l a r i f i c a t i o n with the categories, l i n k i n g categories, synthesizing, understanding, discussion with the chair of my thesis committee, and f i n a l l y v e r i f i c a t i o n with informants. My aim was not to exclude any obscure d e t a i l s ( o u t l i e r s ) within the tr a n s c r i p t s and categories, and thus not to a r b i t r a r i l y or prematurely conclude themes. F i e l d notes were used to further understand the context within which themes were formed. This a n a l y t i c a l plan served as the d i r e c t i o n for my data analysis process. Limitations I l i m i t e d the number of informants interviewed and audio taped to f i v e . Ray (1994) suggests that usually eight to twelve informants are required for themes to begin to recur i n the data. But Sandelowski (1986) states that data c o l l e c t i o n i s ceased when data saturation occurs. The number of informants i n the study arid the number of interviews that I conducted may have limited the number of themes d i s c e r n i b l e from the data; also, v a r i a t i o n i n the data may be i n s u f f i c i e n t . Hence, the a p p l i c a b i l i t y of t h i s study i s l i m i t e d to the informants being studied. 98 The fact that I am a neophyte researcher may l i m i t the depth and richness Of the themes described i n the study. Further, the exclusive use of a verbal text i s an inherent weakness i n t h i s study: my interpretations iftay not r e f l e c t the differences i n experiences that the informants describe. Rather, my interpretations may r e f l e c t the differences i n the informant/'s capacity to use language and discourse (Dreher, 1994). Since I selected informants for the study using the th e o r e t i c a l and nominated sampling techniques, they may have represented a sp e c i a l i z e d subgroup of the t h e o r e t i c a l population of women with AN who have been h o s p i t a l i z e d for treatment. This subgroup may r e f l e c t unique or p a r t i c u l a r c h a r a c t e r i s t i c s ; women who would not have volunteered for the study may indeed r e f l e c t d i f f e r e n t c h a r a c t e r i s t i c s . Moreover, some of the l i t e r a t u r e suggests that women who are treated for AN i n the hospital setting are often sedated and/or su f f e r i n g side e f f e c t s of malnourishment such as i r r i t a b i l i t y and anxiety. The extent that these women are able to r e f l e c t on and describe t h e i r conventional treatment experience i s thus unknown. Since I established over the telephone whether the informants were able to r e f l e c t and share t h e i r experiences, I had to consider to what extent I could e s t a b l i s h whether or not a woman was q u a l i f i e d to inform on 99 the phenomenon of i n t e r e s t based simply on a telephone conversation. Some feminists may perceive t h i s study as ethnocentric because of the requirement that a l l informants were required to speak fluent English. S t i l l , i t was beyond the scope of t h i s study because of the time constraints that I was under (and the p r a c t i c a l i t y and expense of h i r i n g a translator) to consider any informant who could not speak English and I acknowledge t h i s as a potential l i m i t a t i o n of the study. As more studies incur, i t i s evident that more males are affected with Anorexia Nervosa. It i s therefore a l i m i t a t i o n to not include a male perspective i n t h i s study. Context Within Which Interviews Were Conducted The following observations must be considered when l i n k i n g the phenomena under study to the context within which the i n i t i a l and follow-up interviews were conducted: 1) A l l of the informants had AN at the time of the f i r s t and follow-up interviews conducted. The extent to which the manifestations of AN (e.g., malnutrition) and/or the side e f f e c t s of treatments (e.g., medications) influenced the phenomena are noteworthy. 2) Two of the interviews were conducted at community t r a n s i t i o n homes where the chance of an i n t e r r u p t i o n by a p r a c t i t i o n e r s was possible. Therefore, the extent to 100 which these informants f e l t completely uninhibited i n t h e i r interviews i s worthy of consideration. 3) A l l of the informants received a nominal sum for partaking i n the study. One informant was on welfare, another was c o l l e c t i n g unemployment insurance, and a t h i r d was unemployed and being supported by her parents. Consequently, informants may have beert influenced by the need for money. 4) Three of the informants indicated that they had part i c i p a t e d i n numerous studies across d i s c i p l i n e s related to t h e i r AN and therefore, they could be considered practiced subjects. Rigor The substantive value of t h i s study rests on my a b i l i t y to describe the informants' treatment experiences for AN. To th i s end, I l e f t a clear decision t r a i l by which future readers can recognize the thematic descriptions that I have discerned (Sandelowski, 1986). In addition, I provided an opportunity for women to describe t h e i r r e a l i t y . Moreover, I acknowledged covert assumptions about ethnocentrism, classism, and androcentrism within the study. These assumptions are consistent with feminist inquiry which i s grounded i n women's actual experiences (Parker & McFarlane, 1991). 101 I remained open and f l e x i b l e to establishing precise a p r i o r i data c o l l e c t i o n techniques and data analysis procedures (May, 1989). Yet, I approached data c o l l e c t i o n procedures from a systematic and consistent method using the plan that I have modified from F i e l d and Morse (1985) and Giorgi (1985). My aim was to e x p l i c i t l y account for, rather than eliminate, my biases (Dreher, 1994). I was r e f l e x i v e i n t h i s study by acknowledging any preconceptions I had which may have impeded or influenced the content and conduct of t h i s study. Further, I kept a journal i n which I recorded the thoughts and feelings I had during the interviews as well as during data analysis (Lamb & Huttlinger, 1989). I e x p l i c i t l y reported the context i n which the interviews were conducted and I linked the phenomena under study to that context (Dreher, 1994). Following the t h e o r e t i c a l assumption of "appropriateness" (Morse, 1989, p. 127), I established that the informants i n t h i s study were able to describe, a r t i c u l a t e , and r e f l e c t on t h e i r experiences i n the treatment s e t t i n g . I observed common p i t f a l l s i n interviewing such as "interruptions, competing d i s t r a c t i o n s , posing awkward questions, jumping, teaching and preaching, counseling, presenting one's own perspective, s u p e r f i c i a l interviews and secret information" ( F i e l d & Morse, 1985, p.68). A provision i n t h i s study was that I would interview and audio-tape more informants i f I was unable to discern 102 s u f f i c i e n t themes to describe the experiences that i n i t i a l informants described to me. However, th i s was unnecessary as informants s u c c i n c t l y described common experiences that enabled me to discern s p e c i f i c themes. I attended to categories and themes that I was not able to discern i n the data to i d e n t i f y exceptions and patterns. Dreher (1994) states " i t i s often the things that are not talked about that are the most c r i t i c a l and the most revealing".(p.285). To ensure that the themes I discerned were not univocal or a r b i t r a r y (Giorgi, 1985), I constantly c l a r i f i e d the data myself and under the guidance of the chair of my thesis committee who i s an expert q u a l i t a t i v e researcher. " E l i t e bias" may have been a problem i n t h i s study as the informants that agreed to be interviewed may have been the most accessible and highest functioning members of the AN community. I f a c i l i t a t e d the truth value of the research by presenting a f a i t h f u l description and i n t e r p r e t a t i o n of the informants' descriptions. The a p p l i c a b i l i t y of t h i s study was admittedly l i m i t e d to those i n s i m i l a r circfimstances. S t i l l , the informants v e r i f i e d my research findings and unanimously concluded that i t could " f i t " into contexts other than t h i s s p e c i f i c study s i t u a t i o n . E t h i c a l Considerations The e t h i c a l considerations for t h i s study included the following: 103 1) voluntary consent through written consent; 2) c o n f i d e n t i a l i t y (I destroyed a l l tapes a f t e r the research was complete); 3) privacy (the meetings and conversations were privy to me and the informants alone) ; 4) i n c l u s i o n and exclusion of information. (At any time an informant wished to end our conversation, remain s i l e n t or have the tapes erased, I adhered to her request. This happened on one occasion as an informant did not wish to discuss a c e r t a i n treatment setting because i t evoked pai n f u l and unresolved memories). A l l audio-tapes were numerically coded and a v a i l a b l e only to me and the chair of my thesis committee. The proposal for my study was e t h i c a l l y approved by The University of B r i t i s h Columbia Behavioral Science Screening Committee For Research and Other Studies Involving Human Subjects. Each informant received an Informant Information Letter (Appendix C) and had an opportunity to meet with me to receive further information and have any questions that she may have had answered. Once she f e l t she f u l l y understood the study, the informant signed a written consent (Appendix D) which included the t i t l e , purpose, explanation of the research, steps to be followed, and the r i s k s and benefits e x p l i c i t l y stated (Munhall, 1988) . In addition, process 104 consenting (Munhall) was affirmed from time to time as verbal consent on the audio-tape. I e x p l i c i t l y stated i n the consent form (Appendix D) the benefits for informants taking part i n t h i s study. I r e a l i z e that they may benefit from t a l k i n g about t h e i r experiences with AN; Ramos (1989) suggests that a " l i s t e n i n g ear" (p. 59) can be a cat h a r t i c experience for informants. In addition, i n the event of encountering a "Pandora's Box" dilemma (Ramos, 1989) where the informant may regress i n her behavior by p a r t i c i p a t i n g i n the study, I would have arranged a r e f e r r a l for the informant to contact her l o c a l chapter of ANAD. However, t h i s was unnecessary. Summary Freed from the confines of an orthodox methodology, I composed the thematic descriptive approach to guide t h i s study. Informants were chosen by virtue of t h e i r a b i l i t y to convey t h e i r treatment experience for AN. Da^ta c o l l e c t i o n and analysis were consistent with the framework for t h i s approach. Confirmability was addressed to the extent that I captured the truth value, a u d i t a b i l i t y , and a p p l i c a b i l i t y of the informant's experience (Sandelowski, 1986). The ri g h t s of the informants were protected by the aforementioned e t h i c a l considerations. Chapter Four w i l l present the findings of th i s study. In Chapter Five a discussion of the findings i s presented. Chapter Six suggests recommendation for future research as well as the implications of the findings for nursing research, practice, education, and s o c i a l p o l i c y . 106 CHAPTER FOUR: PRESENTATION OF THE FINDINGS Introduction In t h i s chapter, the informant's descriptions of t h e i r treatment experiences for AN are presented i n an i n t e r p r e t i v e summary. This summary i s based on the findings that evolved throughout the data c o l l e c t i o n and the application of coding data, as well as the c l a s s i f i c a t i o n and l i n k i n g of categories, to es t a b l i s h themes. This presentation of the findings focuses on the shared experiences of the conventional treatments for AN as described by the informants who pa r t i c i p a t e d i n t h i s study. The informants i n t h i s study have been exposed to the conventional treatments of AN for an extended period of time (4 to 10 years) and as a r e s u l t , have witnessed and experienced many challenges and few benefits. Further, such treatments appear to be constantly evolving which r e s u l t s i n experiences that are often unpredictable and.inconsistent. For the f i v e informants of t h i s study, numerous conventional treatments have either p e r i o d i c a l l y improved q u a l i t y of l i f e , provided temporary hope for recovery, or l e f t them with feelings of "craziness". Informants who claimed to f e e l crazy f e l t i t was a r e s u l t of f r u s t r a t i o n , exasperation, or desperation associated with treatment; a l l the informants now are dubious about the benefits to treatment yet f e e l resigned since they believe no alternatives to the current treatments 107 for AN seem to e x i s t . S t i l l , the mere existence of current treatments regardless of t h e i r challenges provides the informants with much needed hope for recovery. At the time of t h i s writing, none of the informants have recovered from AN. Generally, the q u a l i t y of the treatment experience i s contingent upon: the degree to which informants experienced several conditions of treatment; the nature of the s e t t i n g within which informants have received treatment; and to a greater extent, the q u a l i t i e s possessed by the p r a c t i t i o n e r s who provided the treatment. While informants were able to lab e l the psychotherapies that they've received — art therapy, family therapy, group therapy, i n d i v i d u a l therapy, journaling, narrative therapy, n u t r i t i o n a l education, psycho-J education and self-esteem programs — the psychotherapies were not e x p l i c i t l y or even i m p l i c i t l y described by the informants. Rather, t h e i r focus remained on the q u a l i t i e s that p r a c t i t i o n e r s possess as having fundamental importance i n shaping the treatment experience. Three themes thus emerged from the informants' descriptions of the treatment experience for AN: 1) the q u a l i t y of the treatment experience seems dependent upon several conditions that permeate every realm of the treatment experience; 2) the q u a l i t y of the treatment experience seems contingent upon the nature of the setting; and 3) c e r t a i n 108 q u a l i t i e s possessed by p r a c t i t i o n e r s are an e s s e n t i a l component a f f e c t i n g the q u a l i t y of the treatment experience. Conditions That Permeate The Treatment Experience According to the informants, three conditions that permeate every realm of the treatment experience — the a c c e s s i b i l i t y to treatment programs and p r a c t i t i o n e r s , the q u a n t i f i c a t i o n of recovery, and the medicalization of the AN p l i g h t . F i r s t , a l l informants described treatment for AN as being neither e a s i l y accessible nor r e a d i l y a v a i l a b l e . For example, informants often described situations i n which they waited to access programs or s p e c i a l i s t s upon diagnosis or for follow-up programs when they were discharged from the h o s p i t a l . Second, informants maintained that the treatment experience usually revolved around quantifiable f o c i that ascertained t h e i r recovery i n terms of measurements such as the percentage of body fat and weight gain. Informants f e l t that t h e i r central problems were often overshadowed by a preoccupation with weight gain — a preoccupation that they concurred was l a r g e l y endorsed by p r a c t i t i o n e r s . Third, the medicalization of the AN p l i g h t was taken for granted by informants. That i s , large quantities of a v a r i e t y of medications were prescribed and/or administered to the informants i n t h i s study. Yet, for them, i t meant they needed to maintain a passive or accepting stance towards pharmacological interventions. Indeed, t h e i r respect and 109 f a i t h i n medications and those who prescribed and administered them overshadowed the focus on personal problems at the root of t h e i r AN. A c c e s s i b i l i t y of Programs and Pr a c t i t i o n e r s Once informants decided to seek or were coerced into seeking treatment for AN they waited, sometimes "for months and months and months". Many f e l t they were no closer to gaining access either to eating-disorder treatment programs or to p a r t i c u l a r p r a c t i t i o n e r s for help. Informants were faced with a "waiting l i s t for an eating-disorder c l i n i c " ; they found themselves waiting for "a bed to be a v a i l a b l e " , waiting "to see a d i e t i t i a n or a p s y c h i a t r i s t ", or waiting for "a r e f e r r a l to a psychologist". Informants experienced waiting for treatment as a very painful process ranging from desperation to h o r r i f i c trauma. One informant explained, "I could just barely function, I didn't think that I was going to make i t " . Another informant expressed trepidation about what lay ahead for her a f t e r waiting a lengthy period for treatment: "When I f i n a l l y had the appointment with the psychologist, I remember s i t t i n g there and I almost didn't go i n , I almost got up and walked away". Most detrimental, waiting for^treatment propagated a f u t i l e and f a t a l i s t i c a ttitude that there may not be any hope of recovering, an attitude informants began to accept as r e a l i t y . 110 The w i l l to recover was often overshadowed by the fear that another opportunity may not ari s e to access the system because of the large demand for services. For example, one informant said, "I t r y to get calmed down and have another plug at i t rather than just discharging myself and then having to wait months and months and months to get back into a sort of treatment program". Another informant was d i s t r a c t e d from the treatment process because she was so preoccupied by the date at which the treatment terminated: "I s e c r e t l y brought my own tape recorder and taped the t a l k because when t h i s was a l l over [and] my six months was over at the c l i n i c , I would have something I could hear that would in s p i r e me again". I r o n i c a l l y , most informants emphasized that the longer an i n d i v i d u a l waits to seek help, the longer her patterns and habits of AN become entrenched i n her l i f e s t y l e making i t a l l the more d i f f i c u l t to recover. For informants, treatment was never guaranteed to be avail a b l e at any time, even i f the i n d i v i d u a l f e l t herself to be i n a c r i s i s . Informants explained that even passing the time u n t i l the f i r s t or next "appointment" could be agonizing. As well, the limited duration of treatments or services rendered by p r a c t i t i o n e r s was something of which informants were always cognizant: "We'd have an appointment only once a week with a p s y c h i a t r i s t and a d i e t i t i a n . Then I'd be on my own to f i n d some care outside the h o s p i t a l . I 111 always had that looming over my head that one day I wasn't going to be getting anymore help". A l l the informants expressed the yearning to p a r t i c i p a t e i n at least one type of treatment that was open-ended and long-term, and/or one c r i s i s service that would have provided a place to f a l l back on i f the need arose. According to informants, t h i s service would be p a r t i c u l a r l y relevant at two vulnerable points i n treatment: f i r s t , when informants were discharged from a program a f t e r which they were ph y s i c a l l y renourished yet t. s t i l l vulnerable when expected to adapt to "my new body", and second, when informants were near weight recovery and working through personal problems often the root of t h e i r AN. Informants claimed that such a service could respond to t h e i r need to engage i n a "support group" or to contact "someone to t a l k to every week". One informant currently p a r t i c i p a t e s i n what she c a l l s an "open group". She describes the group as o f f e r i n g an open-ended treatment that responds to a v a r i e t y of needs of men and women. She said, "This i s an open group so I don't f e e l always worried that my time i s soon to be up". Two other informants p a r t i c i p a t e i n an open group geared towards meeting the s p e c i f i c needs of people with AN. However, both informants indicated that the nature, timing and design of the group did not foster commitment to attend and p a r t i c i p a t e ; to these informants, the group seemed to represent something of the hopelessness of AN. 112 Once accepted into treatment, the informants experienced v u l n e r a b i l i t y and dependency regarding the a v a i l a b i l i t y of the p r a c t i t i o n e r s . Although they described the waiting period for r e f e r r a l s to see p s y c h i a t r i s t s , d i e t i t i a n s , and psychologists as agonizing, informants were p a r t i c u l a r l y c r i t i c a l of the length of time that nurses were w i l l i n g and/or able to spend with them. Informants frequently indicated that nurses were not r e a d i l y available for "even an hour" to tigilk, e s p e c i a l l y within the hospital s e t t i n g . This l e f t informants frustrated and resigned to depending on other p r a c t i t i o n e r s for treatment. Overall, the informants believed that the number of applicants for treatment far exceeded the a c c e s s i b i l i t y of programs and p r a c t i t i o n e r s . Further, they f e l t the costs of treatments were l i k e l y high and the resources within the health care system were lim i t e d . When prompted as to how they came to formulate these opinions, they claimed that the pr a c t i t i o n e r s themselves had often conveyed t h i s information to them. As one informant explained, "They can't a f f o r d to keep putting me i n a regular ho s p i t a l . Its too c o s t l y . My GP said that she was s t a r t i n g to get vibes from the top people how they use the beds". Thus, the entire experience of waiting for treatment evoked perpetual i n s e c u r i t y i n informants and a loss of hope leading to resignation. 113 Q u a n t i f i c a t i o n of Recovery Informants consistently referred to two qua n t i f i a b l e elements as a basis for appraising t h e i r recovery. Whether t h i s was a manifestation of the AN p l i g h t or a by-product of the conventional treatment process i s debatable. However, a l l informants claimed to experience a treatment process that positioned t h e i r recovery i n terms of issues related to weight and nourishment. The method for recording the course of AN i n terms of weight involves measuring the percentage of body fat on an i n d i v i d u a l . S p e c i f i c a l l y , a device i s used to measure the skin folds on three locations on the body. According to the informants, health care p r a c t i t i o n e r s thought t h i s method was more accurate than recording the weight of an i n d i v i d u a l using a weigh scale. For informants, i t was less threatening because i t did not e x p l i c i t l y divulge pounds/kilograms and therefore, was the method preferred by the informants. Indeed, four of the informants were so used to knowing t h e i r percentage of body fat that they were unable to t e l l me what t h e i r weight was i n pounds/kilograms. Having s k i n f o l d measurements taken was one of the most anxiety provoking experiences for informants before, during, and a f t e r the procedure. S p e c i f i c aspects of anxiety re l a t e d to the procedure included the weekly methodical manner within which the measurements were conducted — indeed, t h i s 114 procedure was one informant's only connection to a treatment program at one point i n her recovery. S p e c i f i c a l l y , the uncertainty of not knowing what an informants' s k i n f o l d measurements would be before the procedure was most anxiety producing. Both hearing the results of the procedure and r e a l i z i n g the consequences of the resultant measurement were also traumatic. As one informant expounded, Every Wednesday morning at 07:30 the Doctor would come and do your skinfolds. You'd be on pins and needles. You'd either be very upset because you gained weight or a b i t bothered because you didn't, or i f you l o s t you'd be worried again because of the consequences. For four of the informants the consequences or penalties of weight loss or not meeting the required goal set forth by the pr a c t i t i o n e r s was perceived as threatening and disempowering: "They're so focused on numbers, the decisions are made for you. It's l i k e you gain one percent a week or you go on the tube; you gain one percent a week or you get kicked out". Another quantifiable measure of recovery described by informants was related to nourishment. The measurable aspects of procuring nourishment during t h e i r treatments included the rate and quantity of naso-gastric tube feedings and/or intravenous feedings, and the numbers of ca l o r i e s consumed during meals and throughout the day. As well, p r a c t i t i o n e r s kept note of how much education each informant had received emphasizing relearning to eat and preparing a meal plan. i 115 Naso-gastric tube feeding was perceived as either a punishment and an impediment or a benefit to recovery, depending on the manner i n which i t was administered by p r a c t i t i o n e r s . Informants who had a choice i n p a r t i c i p a t i n g i n the care of t h e i r "tube", the time at which the feeding would take place, and the quantity and rate at which a feed was administered seemed to welcome and experience some r e l i e f from i t . One informant claimed that she was able to t o l e r a t e tube feedings i f they were administered at night while she was sleeping and thus was not expected to watch, l i s t e n to, or f e e l the nourishment infusing. Another informant who was able to negotiate with p r a c t i t i o n e r s to supplement her coffee with the tube feed nourishment i n order to wean herself back to o r a l feedings perceived the tube feeds as a benefit. However, when threatened or forced to receive a nasal-gastric tube without choice, the informants claimed to have become reb e l l i o u s and to have refused to cooperate with the procedure. One informant summed up the experience l i k e t h i s : "I f e l t l i k e I was under force; there was always t h i s b a t t l e going on, and for me to win t h i s battle meant that I wasn't going to eat or accept the tube". These sentiments were described more often by informants as the norm, rather than the exception. Generally the f i v e women c r i t i c i z e d the rapid pace of weight gain while i n treatment. S p e c i f i c a l l y , they explained 116 that the quantity of tube feedings was too large and they were infused too quickly. Further, the amount 'of s o l i d food that they were required to consume (often i n addition to tube feedings) three times a day seemed too much, too soon. The notion of l i m i t e d resources and f i s c a l r e s t r a i n t was often c i t e d as a rationale for rapid refeeding. As one informant stated, "They want to force as much food into your system as possible during the short time that you're there because they only have l i m i t e d time that you're able to be there". While being convinced or coerced into eating was d i f f i c u l t for a l l informants, being supported and being given choices i n an atmosphere of acceptance f a c i l i t a t e d eating. As one informant stated: I worked r e a l l y well with the l a s t d i e t i t i a n because she l i s t e n e d to me and she would work with me and she would go 'how about t h i s ? ' And I'd go 'oh well I'd rather have t h i s ' and she'd go 'okay well we'll t r y that'. But the d i e t i t i a n that I had before that was just l i k e 'nope, my way or the highway 1. And that didn't work for me at a l l . It was just l i k e , 'forget i t , then I ain't going to eat anything'. Ignoring or remaining s i l e n t during and a f t e r an informant's meal was also perceived as a supportive gesture. One informant related the comment/ "You've eaten something more daring than normal and the s t a f f congratulate you. That sort of thing i s l i k e rubbing sandpaper on a sore. It would be best i f they don't say anything at a l l " . C l e a r l y , praise i s 117 not warranted when the issue i s food consumption. Moreover, informants suggested that smaller meals be served more often throughout the day and that t h e i r food preferences be considered and served when possible. Thus, such acts were perceived as supportive gestures by informants. One of the most p o s i t i v e quantifiable aspects of recovery the women described included the educational sessions each received related to understanding n u t r i t i o n and relearning the amounts of food required to lead a healthy l i f e . A l l of the informants claimed that they had a c t u a l l y "forgotten" the quantity and types of foods to eat to support a healthy l i f e . D i e t i t i a n s were singled out as p r a c t i t i o n e r s most apt to provide t h i s service. They could be trusted to o f f e r a food plan that would provide nourishment for a s p e c i f i c weight. While informants r e l i e d more on d i e t i t i a n s at the beginning stages of t h e i r recovery and less as they recovered, informants a l l f e l t that they could depend on the expert n u t r i t i o n a l education provided by d i e t i t i a n s throughout t h e i r treatments. Overall, informants concurred that the need to measure recovery i n a quantifiable context was contingent upon the severity of the AN. Most informants agreed that the need to focus on weight and/or nourishment was p i v o t a l i n the early stages of treatment and required much less emphasis towards the l a t e r stages of recovery. The issue at hand seemed to be t 11 not whether measurements of weight and nourishment were needed but to what degree they should be emphasized at various stages of treatment. Informants implied that too often p r a c t i t i o n e r s placed more emphasis than necessary on weight and nourishment throughout the entire treatment process; they were unable to l e t the quantifiable aspects of recovery progress to more subjective aspects that have a psychotherapeutic focus. As one informant warned, "counting c a l o r i e s continuously i s a diet and a d i e t means r e s t r i c t i n g " . Consequently, the informants themselves were not able to s h i f t t h e i r focus away from the q u a n t i f i a b l e aspects. While informants found services existed for having skinfolds measured weekly at a l o c a l h o s p i t a l , no corresponding systematic check on mental status was offered. A l l informants emphasized the need to focus i n the early treatment of AN on the physical and quantifiable dimensions and during the entire recovery process on the psychotherapeutic components of the AN p l i g h t . Thus, the q u a n t i f i c a t i o n of recovery had negative ramifications, a perception shared by each of the informants. Medicalization of The Condition Often what i s not said i n a conversation i s as v a l i d or important as what i s said. In describing t h e i r treatment experience for AN, none of the informants offered views on pharmacological interventions they had received during the 119 course of t h e i r treatment experiences. Given the number of medications used and the frequency with which informants w i l l i n g l y received them, t h i s i s a s i g n i f i c a n t omission. In follow-up interviews, conducted to v e r i f y my interpretations of the findings, some informants were quick to point out that pharmacological therapy i s a very in d i v i d u a l concern: what may help one i n d i v i d u a l , they said, w i l l not necessarily help another. One informant claimed that pharmacological interventions were not act u a l l y regarded as therapy because the i n d i v i d u a l i s a passive re c i p i e n t and unable to control the benefits or hindrances offered by medications'. At the time of the f i r s t interviews for t h i s study, four of the f i v e informants s e l f administered, on a regular basis, a t o t a l of 15 d i f f e r e n t types of prescribed medications related to t h e i r AN. The most common medications were antidepressants such as Prozac, R i v i t r o l , Lifvox, and Zolof; a n x i o l y t i c s such as Ativan and Chlorpromazine (CPZ); and sedatives such as Chloral Hydrate and Immovane. Even an-antipsychotic such as Resperidone, a drug that i s currently not indicated for treating AN was prescribed to two informants. The only informant to claim she was near recovery was not currently taking any medications. Indeed, she was the only informant to refuse to take medications throughout most of her i l l n e s s . She said, "At one point I was on medication. I always fought medication and then I was r e a l l y down and out i 120 and my doctor said well t r y i t , you know maybe i t w i l l help. Then I just became a stoned bulimerexic and I decided that bulimerexia was good enough for me". For the informants, medications were a mainstay of t h e i r l i v e s . Yet, a l l neglected to i n i t i a t e conversations of the topic unless prompted. Four informants began taking prescribed medications (most often antidepressants) almost immediately upon t h e i r diagnosis of\AN. For these women, the quantity of medications administered was least when p a r t i c i p a t i n g i n community-based services and greatest when receiving treatment i n a h o s p i t a l , e s p e c i a l l y i f they were on a ward designed for ind i v i d u a l s with eating disorders. As well, the frequency, quantity, and va r i e t y of medications administered increased during each hospital admission. The taking of medications and the amounts the women themselves f e l t they needed, firmly related more to the s e t t i n g (in or out of hospital) than to the severity of t h e i r condition. Two of the informants required large amounts of sedation to "numb out the experience" of refeeding while h o s p i t a l i z e d . After spending three hours with-one informant i n her home discussing intensely personal issues for t h i s study, I went to v i s i t her one week l a t e r on an eating-disorder ward where she was scheduled to undergo refeeding for a three week period. In order to endure her tube feedings, she had received many medications. As a 121 consequence, she was unable to recognize me, she had s l u r r e d speech, a s h u f f l i n g g a i t , and she needed to be accompanied everywhere by a nurse throughout the day. Informants seemed to welcome the opportunity to escape or achieve t h i s state of o b l i v i o n (offered f r e e l y by p r a c t i t i o n e r s ) , b e l i e v i n g that i t was the only way to cope with the refeeding process. Currently, two informants use night-time sedation to allow the food that they have consumed to digest i n t h e i r system while they are sleeping. None of the informants could r e c o l l e c t being offered any alternatives to accepting medications as a method of coping with refeeding. A l l informants were able to defend the use of a n x i o l y t i c agents for a l l had f e l t r e l i e f of anxiety related to weight gain and/or consumption of nourishment. None of the informants were aware of any other way i n which to a l l e v i a t e t h e i r anxiety except through pharmacological intervention. When prompted to explore other avenues to a l l e v i a t e anxiety such as yoga or meditation, a l l stated that they would be open to t r y i n g such approaches. Although three of the informants were taking antidepressants at the time of t h e i r f i r s t interviews, only one informant defended the use of anti-depressants which she said helped her "some of the time". Of the three, only she t r u l y believed., she was depressed. The question and answer: R: Are you depressed? 122 I: "I don't know, they t e l l me that I am", was common among informants. A l l of the informants were extremely knowledgeable about the names of, quantities of, and indications for the medications that they received and believed they required. For example, one informant asserted, What I r e a l l y need i s a t o t a l of 12 to 16 milligrams dispensed 3 to 4 times per day. One drug i n p a r t i c u l a r i s R i v i t r o l . The l a s t time around i n the medical unit for me I was taking upwards of 12 milligrams of R i v i t r o l per day. Well no one could believe that I could be taking that much. I was s t i l l active and going at i t and often taking a second drug to make the f i r s t drug more e f f e c t i v e . Informants acquired knowledge about medications through purchasing books or researching a medication i n a l i b r a r y . The reason most c i t e d was the desire to understand the side e f f e c t s of the medication. They needed assurance f i r s t that weight gain was not a side e f f e c t and second, that the medications were not addictive. When prompted to define addiction, most informants referred to physical withdrawal symptoms that occur upon discontinuation of the medication; none believed that mental dependency could occur. I r o n i c a l l y , over the course of added hospital admissions, informants claimed to b u i l d up a tolerance to medications requiring increasing dosages for s i m i l a r e f f e c t s . Added ho s p i t a l i z a t i o n s thus seemed to increase t h e i r dependency on 123 medications. One informant asserted, "One of his interns came up [to me], and t h i s guy sat there l i k e every hour on the hour just bombing me with Valium, just an i n c r e d i b l e amount of Valium. Like he just couldn't believe how much he was giving me and t h i s s t u f f just wasn't touching me". Three of the informants believed that they would be on medications for an i n d e f i n i t e period of time and could not imagine coping i n the future without them. None of the informants had been introduced to any adjunct types of interventions to a l l e v i a t e t h e i r s u f f e r i n g or help them have a modicum of c o n t r o l . Whatever the setting for treatment of AN and regardless of the educational background of p r a c t i t i o n e r s , informants c i t e d the same three aspects of treatment as negatively a f f e c t i n g t h e i r experience and t h e i r recovery: 1) waiting for openings i n treatment programs which was always agonizing, sometimes to the point of worsening the i l l n e s s ; 2) enduring being weighed and measured which produced s i g n i f i c a n t anxiety; and 3) being medicated which seemed to r e l a t e as much to the severity of the AN as to the s e t t i n g . Each of these aspects to treatment created an obstacle to recovery and l e f t informants assenting to i l l n e s s . Nature of The Setting The informants i n t h i s study have received or are currently receiving conventional treatment i n the following settings: emergency wards, eating-disorder wards, medical 124 wards, general p s y c h i a t r i c wards, p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s , community support centers, and community t r a n s i t i o n houses. When discussing the treatment experience, the informants always distinguished among t h e i r experiences according to the setting i n which treatment occurred. A t y p i c a l conversation went as follows: R: Could you describe some of your treatment experiences for AN? I: Well that depends on where you mean. Do you mean on the medical ward or the eating disorder ward or outside of the hospital? In a l l settings, waiting to access treatment programs, quantifying recovery, and medicalizing the AN was p i v o t a l i n the treatment experience of the informants, but only where programs were c a r e f u l l y planned and consistently followed was treatment a c t u a l l y e f f e c t i v e . From in-hos p i t a l treatments to eating- disorder wards to medical and ps y c h i a t r i c wards and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s to between hospital and community and community-based treatment programs, consistent differences i n q u a l i t y and effectiveness of treatments were noted by informants. Hospital-based Treatment Emergency Wards Emergency wards were accessed when an informant was experiencing a c r i s i s . Types of c r i s i s included one informant overdosing on a s p i r i n because she couldn't cope with the 125 newly gained weight that she had acquired while h o s p i t a l i z e d ; another informant acted completely reticent^ her family took her to the emergency ward not knowing what else to do for her; a f i n a l informant said that she 'just couldn't cope with the AN and needed to t a l k with someone'. A l l of the informants indicated that they were completely misunderstood i n the emergency ward by most of the p r a c t i t i o n e r s . Since a c r i s i s related to AN was linked for informants to interpersonal and psychological distresses such as f e e l i n g hopeless, s u i c i d a l , and anxious, ongoing interventions were required but not sought. It was assumed and to a l e s s e r extent experienced by informants that the emergency routes such as emergency departments existed to treat only t h e i r physical symptoms (e.g., acute e l e c t r o l y t e imbalances, cardiac arrhythmias or kidney f a i l u r e ) and d i s t r e s s centers such as suicide hot l i n e s (e.g., suicide, depression) were not t a i l o r e d to meet t h e i r i n d i v i d u a l needs related to t h e i r AN while i n c r i s i s . Nurses, they said, seemed to indicate that those with AN were not a p r i o r i t y for treatment. Doctors were described by informants as either rushed to get them out of the emergency room or lacking i n the expertise needed to understand the AN experience of each i n d i v i d u a l . Thus, c r i s i s intervention was perceived by informants as either not e x i s t i n g or i n i t s present existence, a complete waste of time because informants did not perceive conventional routes of c r i s i s intervention to meet t h e i r needs. The combined t o t a l of hospital admissions for the informants to any ward p r i o r to diagnosis of AN was nine admissions; the combined t o t a l of t h e i r hospital admissions to any ward since diagnosis pf AN was 9 3 admissions over a span of 10 years. Cl e a r l y , h o s p i t a l i z a t i o n played a large part i n the treatment experience for the informants i n the study. The hospital was perceived by most of the informants as an a r t i f i c i a l and u n r e a l i s t i c environment where individu a l s get refed (at best) and learn "mechanical eating" (at worst) with the intention of gaining weight. The h o s p i t a l represented a place where informants received a nasal-gastric tube, were c e r t i f i e d , and were sometimes placed i n r e s t r a i n t s and/or seclusion. Informants concurred that a substantial difference existed i n the implied q u a l i t y of care provided by p r a c t i t i o n e r s i n eating-disorder wards than i n other wards i n the hospital s e t t i n g , such as the medical and general p s y c h i a t r i c wards, and the p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s . Generally, i t seemed that, on eating-disorder wards, p r a c t i t i o n e r s possessed the knowledge, c l i n i c a l expertise, and empathy needed to care for i n d i v i d u a l s with AN, while, on other wards, pra c t i t i o n e r s lacked these q u a l i t i e s . Curiously, the nursing profession was singled out by informants as the d i s c i p l i n e least available to provide 127 q u a l i t y care i n a hospital setting, e s p e c i a l l y on medical wards. Conversely, nurses were perceived as being quite competent p r a c t i t i o n e r s i n community settings. As well, informants indicated that the quantity and va r i e t y of medications received were highest i n hospital settings. Eating-Disorder Wards ' For a l l of the informants, eating-disorder wards were the only hope or l a s t hope for recovery. Four of them spoke of the months and months that they had waited on a l i s t to be accepted into a spe c i a l i z e d treatment f a c i l i t y for AN. Indeed, eating-disorder wards were described as the most d i f f i c u l t of f a c i l i t i e s to access because of the long waiting l i s t s . According to informants, the eating-disorder wards i have constantly evolved and changed. For example, t h e i r i n -patient programs have decreased from six months to three months, then down to three week programs for refeeding. Those who had experienced such changes believed that they were better off spending less time i n the hospital environment. The reason they offered was that the a r t i f i c i a l and u n r e a l i s t i c nature of the hospital was an intensely structured regime that they came to view as a safe environment. For many of them, the structure was completely opposite to that found i n t h e i r home environments. As one woman stated, "I f e l t very i n s t i t u t i o n a l i z e d when I came out and I dropped weight r e a l l y f a s t . It was too safe." While 128 t h i s safety was necessary, i t was important for informants that they not get used to the u n r e a l i s t i c compliance of the hospital treatment program. The eating-disorder wards were described as the most supportive place to receive quantifiable procedures such as tube feedings and s k i n f o l d measurements because of the expertise of the p r a c t i t i o n e r s . While a l l the informants who had been treated on an eating-disorder ward gained weight, maintaining that weight proved to be a more d i f f i c u l t challenge. For example, one informant asserted, The hospital [eating disorder ward] i s the worst place you can go i f you're t r y i n g to gain weight the normal way. A l l you're doing i s getting the body renourished but you're doing nothing for the problem; they're just putting a bandaid on the problem, and you go o f f , and you just get r i g h t back to where you were to begin with. Another informant said, " I ' l l tolerate whatever they want to do or whatever I'm forced, to do u n t i l I get out then I just immediately lose the weight". Although the informants conceded that t h e i r transient weight gain was related to the a r t i f i c i a l environment within which they were treated, they also f e l t that the quantity and r a p i d i t y at which they were forced to gain weight was too high, they were not allowed time to adjust to t h e i r "new body". Further, the agencies involved i n aiding the t r a n s i t i o n of informants from eating-disorder wards to community settings lack resources. As a r e s u l t , informants were often l e f t to their;own devices while 129 waiting to secure a community-based program. This agonizing wait was offered as a major reason why weight loss occurred upon discharge from eating-disorder wards. Three of the informants indicated that, on discharge, they experienced a dramatic loss of weight while waiting to get into a "day program". Although the informants claimed that too rapid weight gain was unsettling, they f e l t unable to c l e a r l y focus on personal problems u n t i l they had gained a c e r t a i n weight. Upon r e f l e c t i o n , informants stated that c e r t a i n psychotherapies were of benefit even before an optimal weight was reached. Indeed, informants f e l t that because each step i n recovery was incremental, a l l aspects of treatment should include psychotherapeutic support. Even though, during refeeding, the informants were too heavily sedated so they could t o l e r a t e the process of psychotherapy and thus were unable to a c t i v e l y p a r t i c i p a t e i n any available psychotherapy, they i n s i s t e d that the very a v a i l a b i l i t y of psychotherapy was important to them and wished that they did not have to depend on sedation to "survive the tube". Most informants described an unresolved dichotomy between receiving sedation to tolerate refeedings at the expense of p a r t i c i p a t i n g i n psychotherapy programs. Informants indicated that complimentary therapies (therapeutic touch and reflexology) and experiential therapies (art therapy and 130 music therapy) could have resolved the dichotomy by aiding them to relax while learning how to eat and cope with weight gain. Often, the women described a preoccupation with the threat of being tube fed, c e r t i f i e d , secluded or discharged i f they were unable to meet the weekly weight gain requirements determined by the p r a c t i t i o n e r s on eating-disorder wards. At times, t h i s preoccupation consumed t h e i r thoughts and undermined the long-term success of treatment. One informant speculated, I think that one of the reasons I never learned how to eat for myself or I never learned how to get better for myself was because a l l my h o s p i t a l i z a t i o n s , I would eat because I had t h i s big fear of going on the tube, or I had a fear of being c e r t i f i e d , or I had a fear of getting kicked out. Ultimately, the perpetual threat of such treatment experiences i n hospital settings l e f t informants f e e l i n g powerless, resigned, and t e r r i f i e d . If informants were able to p a r t i c i p a t e i n the administration or regulation of the tube feeds i t was viewed more as a benefit than a punishment. I f , on the other hand, an informant had not been given any choice, she described f e e l i n g resigned or r e s e n t f u l . This f e e l i n g evoked f r u s t r a t i o n which often resulted i n the weight gain being t r a n s i t o r y or the entire admission being sabotaged by the informant. 131 While both c e r t i f i c a t i o n and discharge represented a threat to Informants, only the threat of discharge was f e l t to be i n e f f e c t i v e i n supporting informants while coping with AN, When informants had been c e r t i f i e d for w'eight l o s s , they f e l t powerless, and the entire treatment was often undermined, e s p e c i a l l y when c e r t i f i c a t i o n was to a medical ward, a general p s y c h i a t r i c ward, or a p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n . According to one informant, "Being committed for me i s l i k e someone having a rope around my neck and I'm constantly being strangled. A l l I do i s hold out u n t i l the commitment i s gone and then l / just go ri g h t back to the way I am". Further, during c e r t i f i c a t i o n , some informants had experienced periods of seclusion. Here, they were r e s t r i c t e d by numerous rules and regulations disguised i n the form of "compliance with treatment". However, most often informants were c e r t i f i e d (committed) i f they were s u i c i d a l . When t h i s was the case they f e l t r e lieved, safe and comforted, e s p e c i a l l y i f the c e r t i f i c a t i o n was to an eating-disorder ward. Thus the threat of c e r t i f i c a t i o n was not as great as the threat of discharge. Often, the more times an informant had been discharged from a program, the more severely she experienced panic, desperation, and f i n a l l y resignation. According to the informants, the threat of discharge as a means of ensuring weight gain was completely i n e f f e c t i v e ; i t undermined not only the treatment but the entir e recovery. , 1 3 2 The consequences of being discharged from a program included the p o s s i b i l i t y of having to wait many months to be readmitted into a program and being completely on one's own in the interim. F i n a l l y , being discharged without any sense of accomplishment l e f t informants f e e l i n g that they were f a i l u r e s and unworthy of the programs, indeed, hopeless cases. Three informants who participated i n t h i s study were subsequently discharged from hospital and community settings for not meeting the weekly weight gain requirements. One of them r e c a l l e d , I got kicked out of the [ t r a n s i t i o n house] l a s t year for the same reason, I couldn't get past 17%. I can't r e a l l y answer the question of what's happened, what has helped, because I am at a loss as to what's going on. Everybody keeps asking me what can we do to help. It's l i k e I don't know anymore. I r e a l l y don't. I don't know what I need, I don't. I wish I could t e l l you. At the time of t h i s writing, t h i s informant was again discharged from the t r a n s i t i o n house, for a t o t a l of three times i n the l a s t two years. Inconsistencies related to treatment existed for a l l of the informants during t h e i r many admissions to eating-disorder wards. Three of them spoke of the discrepancies between the treatments they were t o l d to expect once hos p i t a l i z e d i n eating-disorder wards and what they a c t u a l l y experienced when they were admitted A One informant said, 133 The eating-disorder ward i s good, i t ' s very good. But i t ' s only as good as the actual follow-up once I'm there. I have one doctor i n p a r t i c u l a r who kind of leaves me frustrated i n that h e ' l l say we'll be giving you such and such a drug on t h i s schedule. You'll be t a l k i n g to a d i e t i t i a n , y o u ' l l be ta l k i n g to a therapist twice, and y o u ' l l have X amount of nursing care'. And yet when you go down to the ward the paper work i s n ' t done. The drugs aren't followed through on the schedule, and even stupid things l i k e you're not able to meet with the d i e t i t i a n because the d i e t i t i a n i s on holidays t h i s week and there's been no accommodation made to replace that person. The disappointment existed for informants when eating-disorder wards did not l i v e up to the expectations p r a c t i t i o n e r s had promised. If inconsistencies were experienced upon a f i r s t admission or an early admission, informants f e l t m i s t r u s t f u l and suspicious of the entir e team of p r a c t i t i o n e r s . P e r i o d i c a l l y they would sabotage t h e i r own treatment i n response to such inconsistencies. One informant was able to r a t i o n a l i z e the inconsistencies i n her experience by o f f e r i n g that the economics of health care were such that p r a c t i t i o n e r s were unable to promise today services for tomorrow. Her r a t i o n a l i z a t i o n s did not a l l e v i a t e her mistrust of and disappointment i n p r a c t i t i o n e r s . Eating-disorder wards were perceived to be the best places to be admitted within a hospital framework for the treatment of AN based on the expertise with which the pr a c t i t i o n e r s were able to d e l i v e r t h e i r services. Within t h i s environment, most pra c t i t i o n e r s were perceived as 134 knowledgeable and experienced about AN and able to project confidence and empathy i n the treatments that they offered. While threats of c e r t i f i c a t i o n , seclusion, and/or discharge existed i n these wards and while p r a c t i t i o n e r s could not always be trusted, informants described such wards as a place where they were at times able to p a r t i c i p a t e i n decision making i n regards to t h e i r treatment. Overall, informants perceived eating-disorder wards as a place of hope for recovery. Medical and General Psychiatric Wards, and P r o v i n c i a l P s y c h i a t r i c I n s t i t u t i o n s The worst experiences that informants described i n t h e i r treatment for AN a l l took place i n medical wards, general p s y c h i a t r i c wards, and/or p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s . While informants perceived these places as sources of hope and r e l i e f i n the short-term when no other options were available, these were environments where they could experience forced tube feedings, c e r t i f i c a t i o n s , r e s t r a i n t s and seclusion. Such treatments were r a r e l y given by p r a c t i t i o n e r s who possessed knowledge about AN, c l i n i c a l experience of tre a t i n g those with AN, or empathy. As one informant commented, "They weren't trained i n eating disorders and they didn't know what to do with me". Further, because the focus of treatments within such wards was si n g u l a r l y quantifiable and devoid of psychotherapy, 135 informants described intense periods of boredom and anxiety. Although the informants claimed that they were often l e f t to themselves on eating-disorder wards " i n between appointments", they did not claim to experience the intense boredom r e s u l t i n g i n anxiety that they f e l t on medical and general p s y c h i a t r i c wards or p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s . On medical wards, informants described f e e l i n g alienated, and i s o l a t e d . For them, medical wards were places where patients with AN received only task oriented, medical care. One informant offered, " a l l they do i s NG tube me". Having known the support of p r a c t i t i o n e r s on eating-disorder wards, the experience of p r a c t i t i o n e r s on medical wards seemed to be characterized by indifference and/or oppression. Generally, nursing s t a f f were perceived as aloof, reserved, or simply preoccupied with other matters: You're v i r t u a l l y on your own. Nurses are never there; they're off doing t h e i r paperwork or i f you ask them for help they're too busy or they're just wrapped up i n other patients on the ward. You end up spending a^lot of time just l y i n g on your bed or s i t t i n g i n the lobby. Four of the informants discussed incidents i n which p r a c t i t i o n e r s , p a r t i c u l a r l y the nursing s t a f f , made them f e e l l i k e frauds. I f e l t that while I was i n the hospital I was just taking up a bed which somebody else could have used. They didn't have to care for me the way that they care for a normal j 136 i l l person. I didn't feel that I had the right to be there because I could do everything for myself. The care that they would give the other patients, they didn't give to me. I use to do so many things for myself. I use to think 'oh they're probably thinking what on earth are you in here for? Why does she, couldn't she just eat?' I f e l t - like a fish out of water. « The concept of feeling like a fraud seemed a result of the impatience of practitioners. Further, informants often indicated that they were perceived as a nuisance to the staff and a waste of practitioners' time. Informants were given the impression that i f they were not compliant with treatment that was offered (for example, consuming meals or being receptive to tube feeds), then they weren't really sick and they should just leave. On the medical wards, treatment was primarily centered around weight gain, often coupled with pharmacological therapy (commonly -known as Track One philosophy [Woodside, 1995]); i t was rarely accompanied by psychotherapy which would have acknowledged problems at the root of the AN (commonly known as Track Two philosophy [Woodside]). Some hospitals are designed to follow a "Two Track philosophy": clients are exposed to a three week to three month refeeding regime followed by discharge and a careful follow-up in the community (Woodside, 1995, p. 82). Track One, the refeeding program, seemed to informants to be governed by a philosophy completely different: from Track Two, the follow up. Not only were the goals and means very 137 d i f f e r e n t but Track One was intense, requiring sedatives to be e f f e c t i v e , while Track Two was too loosely structured, often leading to a d r a s t i c worsening of t h e i r symptoms. Relaxation techniques and various forms of ex p e r i e n t i a l or complimentary therapies to reduce anxiety were r a r e l y used as part of Tack One, so informants were discharged f e e l i n g extremely anxious about t h e i r weight. Indeed, informants i n t h i s study claimed they never learned how to eat under the Two Track philosophy. The reason why three weeks to three months has been chosen as a time frame for weight gain i s unclear i n the l i t e r a t u r e on 'Two Track Philosophy'. Too often the time frame was i n s u f f i c i e n t and the informants f e l t no benefit from the program. With i t s focus on refeeding, indivi d u a l s would be gaining weight even as they were s p i r a l i n g further into the psychological whirlpool of AN. A f i n a l and often detrimental weakness i s the system's i n a b i l i t y to guarantee that Track Two w i l l begin as soon as Track One ends. Often informants had to wait at home for community follow-up. When informants were l e f t to t h e i r own devices, they often became worse off than what they were before the three week admission for refeeding. In medical wards, informants' opinions were not sought out; when they were li s t e n e d to they were often discounted, experiences that often resulted i n exasperation and f r u s t r a t i o n . One informant recounts an experience on a 138 medical ward i n which a medical student arrived to perform a histo r y and physical examination on her. She explains, He kept f e e l i n g my throat for glands. And then he asked me a question about what I bring up or something. And I said, 'No, I have anorexia, I don't have bulimia'. But he wouldn't believe me. He kept checking my neck for swollen glands. I said, no, you don't need to bother checking; they aren't swollen. I don't ever bring up; I don't know how. And he s t i l l kept doing i t . It wasn't i n s p i r i n g ; I just didn't get any confidence from his v i s i t at a l l . The i n t e r a c t i o n supported the informant's self-image on the ward as medically uninteresting and i n s i g n i f i c a n t . In general, informants experienced the same oppression and i n f l e x i b i l i t y on general ps y c h i a t r i c wards and i n i p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s that they described on medical wards. Here again, the focus of treatment was mostly q u a n t i f i a b l e , a Two Track philosophy, and p r a c t i t i o n e r s seemed to have l i t t l e expertise regarding AN. Rarely were informants i n v i t e d to p a r t i c i p a t e i n the treatments that they were given. One informant e x p l i c i t l y d e tailed the behavior modification regime that she experienced at a p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n : There, she was c e r t i f i e d , forced to l i v e i n her pajamas for three months, and given the p r i v i l e g e of receiving family v i s i t o r s only i f she complied with the rules of the behavior modification regime. Within t h i s environment she f e l t powerless, i s o l a t e d and without choice. Out of the hundreds of patients at t h i s i n s t i t u t i o n , the 139 informant claimed to be the only one with AN. For her, the experience was a nightmare. She was unable to i d e n t i f y with any of the m e n t a l l y - i l l patients on these wards; she f e l t humiliated, embarrassed, and frightened at being admitted to such a place and then, once there, doubted her own sanity, b e l i e v i n g herself to be "crazy l i k e the others". Informants who had been c e r t i f i e d i n such places f e l t the most hopeless, ^saying, "If you're committed to non eating disorder wards, you lose some of your humanity, legitimacy. I guess somehow you lose your personhood". Informants r a r e l y had to wait for an admission to a medical ward, a general p s y c h i a t r i c ward or a p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n . One informant claimed that she was placed i n a p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n because of i t s a c c e s s i b i l i t y . Two of the informants had experienced the use of r e s t r a i n t s i n medical and general ps y c h i a t r i c wards and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s : one because she had overdosed on ten a s p i r i n , another because she was r e s i s t i n g rapid tube feeding. Although both believed that the r e s t r a i n t s had been used for t h e i r protection, neither of them could j u s t i f y t h e i r use. Both claimed that i f pr a c t i t i o n e r s could have spent the time i"talking them through t h e i r anxieties" and o f f e r i n g them relaxation techniques the r e s t r a i n t s would not have been necessary. Both implied that t h e i r use was a r e s u l t of the lack of s t a f f available to 140 spend the time needed to calm them down and a lack of knowledge related to the use of unconventional therapies i n treatment. Restraints, according to informants, were used most often where wards were short staffed. While medical and general psychiatric wards and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s were necessary to the su r v i v a l of informants, e s p e c i a l l y when eating disorder wards were inaccessible, they provided the worst experience for indi v i d u a l s with AN. Informants spoke of f e e l i n g l i k e frauds i n those places, of not being list e n e d to when they f e l t they knew something about t h e i r i l l n e s s p r a c t i t i o n e r s did not, and of being restrained and is o l a t e d rather than helped through a d i f f i c u l t treatment. While these wards were desperately required when there were no other resources available and a c r i s i s s i t u a t i o n was ensuing, the long term e f f e c t s of such admissions l e f t informants b i t t e r and resentful towards p r a c t i t i o n e r s . Between Hospital and Community Treatment Programs In most of the hospital environments, informants sai d they f e l t a ce r t a i n amount of safety, at least i n terms of eating and gaining weight. There, much was done for them: "You don't have to think or prepare a meal, l i k e one minute you have a l l these people taking care of you and then you leave." However, upon discharge, informants found they were l e f t to t h e i r own devices without a treatment plan and often 141 f, without access to another treatment program. While informants had gained weight i n hos p i t a l , they s t i l l needed treatment for AN. Sometimes informants had to wait up to one year for the next available treatment. Thus, an example of the gap i n the Track One and Track Two philosophy. Furthermore, they frequently made reference to the limited resources for psychotherapy available to them during the t r a n s i t i o n from the hospital to the community. Thus, the t r a n s i t i o n for informants from hospital to community was one of the most d i f f i c u l t times. Only when a discharge was c a r e f u l l y handled, with p r a c t i t i o n e r s ensuring the informant had a treatment program or some supportive group to go to from the Track One to the Track Two philosophy, did the discharge f a c i l i t a t e hope for recovery. The greatest d i f f i c u l t y during the t r a n s i t i o n from hospital to the community was the loss of p r a c t i t i o n e r s . Informants spoke of having to seek out new d i e t i t i a n s , p s y c h i a t r i s t s , psychologists, and social^workers. As one informant indicated, When my admission i s finished, that's i t . It's pack up and move your s t u f f out of the room as quickly as possible so the next person can come i n . They may send you home with a pre s c r i p t i o n but they don't take the onus on themselves to make sure that you've got continuing care or that you see a therapist or that you even have a family doctor. I mean i t ' s t o t a l l y up to you. 142 Not only were informants hurt by the loss of services from i n - h o s p i t a l p r a c t i t i o n e r s that they began to t r u s t but they also f e l t the burden of r e s p o n s i b i l i t y to secure further supportive p r a c t i t i o n e r s for themselves. In any case, during the t r a n s i t i o n period, i f follow-up i n the community was not provided immediately, the achievements made while i n the hospital were l o s t very quickly. Community-based Treatment Community-based treatments that informants had investigated or received included out-patient programs run by eating-disorder c l i n i c s , community t r a n s i t i o n homes, and support groups, such as ANAD. Although not i n f a l l i b l e , informants overwhelmingly agreed that treatments they received outside of the hospital setting were by far the most b e n e f i c i a l . According to them,,the greatest benefit of treatment outside of the hospital setting was i t s r e a l i s t i c nature; accomplishments made in these settings f e l t more permanent. Informants described a sense of accomplishment when they achieved something outside of the h o s p i t a l ; achievements made i n the hospital did not count because the hospital did not represent r e a l i t y . One informant concluded, Outside the hospital you're l e f t much more on your own and progress you've made, you've made yourself. When you're on your own and you're able to make steps forward, 1 I f e e l that they're much more s o l i d steps, much more r e a l i s t i c , and they are going to provide you with more benefit than steps made i n the h o s p i t a l . 143 Generally, t h i s was the response to community-based programs, regardless of the type of. program i t was. Out-patient programs run by eating-disorders c l i n i c s had names such as "the day program, psycho-education, the four day intensive program, and group therapy". Informants described these programs as being very b e n e f i c i a l . Generally, such programs were a source of security within a caring environment. They seemed r e a l i s t i c because informants were forced to meet a l l of t h e i r basic needs just to a r r i v e on time at the program (e.g., get out of bed, dressed, showered and commute to the program), further, they provided support and encouragement from the members. In addition, these programs seemed to provide psychotherapy that a l l of the informants wished they had received throughout t h e i r treatment. Limitations included the r e a l i t y that the programs had a d e f i n i t e ending, which often posed a challenge to informants i n overcoming t h e i r preoccupation with the termination of the treatment rather than focusing on issues related to t h e i r AN. In addition, waiting l i s t s for such programs were up to one year and by the time an informant had been e l i g i b l e to partake i n the program, she was often so i l l that she was unable to meet the expectations of the therapy design and became frustrated with her own perceived incompetence. A f i n a l l i m i t a t i o n described by informants was the lack of emphasis placed on formally including s i g n i f i c a n t 144 others within the treatments. Although informants indicated that family members and friends were in v i t e d to attend some 'therapies', none of the informants had beerf i n v i t e d to pa r t i c i p a t e i n family therapy. Community t r a n s i t i o n homes are homes i n the community i n which women can l i v e i n a house with other women with eating disorders. Here, women receive 24 hour care by p r a c t i t i o n e r s . Three informants i n t h i s study had l i v e d i n a t r a n s i t i o n home for an average of 6 months each. A fourth informant i s on the waiting l i s t for such a home at the time of t h i s w r i t i n g . Community t r a n s i t i o n homes seem to represent freedom, choice, empowerment and realism for informants. While community t r a n s i t i o n homes were deemed by informants more r e a l i s t i c than hospitals, they also protected informants from the unbearable i s o l a t i o n of t h e i r home environments. In the community home environments, informants f e l t that they could more r e a d i l y take chances (e.g., rent a movie and work through the implications of eating popcorn, that i s , food associated with the a c t i v i t y ) because they had the support of the p r a c t i t i o n e r s i n the home, t h e i r peers, t h e i r f a m i l i e s , a l l of whom were often included as part of the treatment plan. The r e l a t i o n s h i p between pra c t i t i o n e r s and informants i n t h i s s e t t i n g was more equal and less p a t e r n a l i s t i c . For example, informants and pr a c t i t i o n e r s cooked and ate the same 145 meals together; they took walks, went for coffee, and made t r i p s to movies and plays. Most of the p r a c t i t i o n e r s i n the community t r a n s i t i o n homes were RN's and RPN's who were perceived as available and who played a more prominent r o l e i n treatment than p r a c t i t i o n e r s with the same backgrounds i n other settings. Here, informants were often able to receive one-on-one care from p r a c t i t i o n e r s when i t was immediately required. After only a short duration, informants found that just having the opportunity for and security of one-on-one support at any time of the day or night was a strength. Peer support was a concept never mentioned i n reference to hospital settings though i t was i n t e g r a l outside ho s p i t a l treatment programs. Informants gained strength from the accomplishments of t h e i r peers as friendships developed among occupants of the home. Sometimes, informants admitted f e e l i n g threatened by or i n competition with these same peers. The competition they said, was l i k e a pendulum swaying between f e e l i n g f a t t e r than peers (thus f e e l i n g bad) and f e e l i n g skinnier than peers (thus f e e l i n g good). However, competing with a peer and/or putting oneself i n check with a peer's successes or f a i l u r e s often motivated informants. Only i n t h i s s e t t i n g was peer support fostered and encouraged by p r a c t i t i o n e r s . However, informants indicated that the support p r a c t i t i o n e r s fostered amongst peers was guarded. As one informant said, "Our friendship was only encouraged while we 146 l i v e d together under supervision. They [practi t i o n e r s ] did not want us to l i v e together^in our own apartment, as roommates". F i n a l l y , families were part of the inclusionary aspects of community t r a n s i t i o n homes, an aspect of care that was not e x p l i c i t l y or consistently addressed i n most other settings. In community t r a n s i t i o n homes, informants described how families could telephone the home at any time. Families were i n v i t e d to p a r t i c i p a t e i n many s o c i a l outings. With t h i s i n c l u s i o n , informants could slowly adapt to coping with s t r e s s f u l family situations while at the same time having the support of p r a c t i t i o n e r s . C r i t i c i s m of the community t r a n s i t i o n homes only involved those aspects that mimicked the hospital settings. Informants found that at times the community t r a n s i t i o n homes were oppressive and i n f l e x i b l e . For example, threats of discharge or of bedrest (seclusion) could be issued. One informant explained, "Right now they're t a l k i n g about i f I don't gain weight they're going to make me stay i n the house for two weeks and b a s i c a l l y be on bedrest and pretend i t ' s the h o s p i t a l " . When forced, when given no choices, informants f e l t the community t r a n s i t i o n homes were a vehicle for sabotaging the recovery process. A l l of the informants for t h i s study were i n or are currently p a r t i c i p a t i n g i n various types of support groups 147 for eating disorders. ANAD, a nation wide organization to support individuals and families with eating disorders, was the only support group common to four of the informants. While most of the informants found that the environment of ANAD was very impersonal, i t was helpful to one informant simply because of i t s willingness to include a family member in i t s treatment and teaching. In ANAD, informants were never able to get to know "the group" because the group changed from week to week. Further, because of the t r a n s i t o r y nature of the group, no group norms were formed; informants could not get past the awkwardness of meeting new members each week. F i n a l l y , with the changing membership;' there was no s t a b i l i t y or constancy from week to week, leaving informants frustrated or disappointed. Most informants t r i e d ANAD, dropped i t , decided to give i t another t r y because they f e l t they needed somewhere to turn, then dropped i t e n t i r e l y as an avenue to pursue. Only one informant's family member had attended ANAD meetings. The informant claimed that her partner found tremendous benefit from the support that ANAD offered. There, he had the opportunity to express his own frust r a t i o n s to t r y to understand AN, and to learn how best to help the informant better cope with her AN. She believed that ANAD made a pos i t i v e difference i n the way he rela t e d to her and helped her. Another informant, although having had AN for four years and experiencing treatment i n a l l of the 148 f a c i l i t i e s discussed, had never heard of ANAD. Of the many pr a c t i t i o n e r s t h i s informant had met i n many d i f f e r e n t f a c i l i t i e s , not one had mentioned the existence of ANAD. Despite my private skepticism that I understood her co r r e c t l y , she maintained t h i s perception on subsequent interviews. A l l informants were aware of a private c l i n i c c a l l e d the Mohtreux Centre i n V i c t o r i a , B r i t i s h Columbia. Informants had either heard of i t through the media or by word of mouth from p r a c t i t i o n e r s or other individuals with AN. When prompted to explore unconventional treatments such as the Montreux Centre, cost was the number one reason c i t e d by a l l the informants as to why they did not explore t h i s avenue. However, when I informed them that the Montreux Centre may o f f e r subsidized treatment, informants claimed that they were skep t i c a l of the Montreux Center's claims to success and f e l t that no s c i e n t i f i c basis had been made to back the claims of Peggy Claude-Pierre. Informants found the Montreux Center appealing because of the one-on-one care that i t offered. One informant had met with Claude-Pierre i n V i c t o r i a for an hour. She concluded a f t e r the session that i t was useful to hear Claude-Pierre's approach to the treatment of AN and to receive her many "tangible arid constructive suggestions". However, the informant perceived the center as a private and exclusive place to which she could never f i n a n c i a l l y a f f o r d > 149 to be admitted. The informant contended, "It's not a v a i l a b l e , so I don't agree with her form of treatment. The eating-disorder c l i n i c and the community programs are better. Way better. It's just that we need more of them, and we need more people out there with t r a i n i n g . " The perceived e x c l u s i v i t y of the Montreux Center seemed to undermine i t s worth to informants. S i m i l a r l y , cost, skepticism and lack of encouragement from mainstream pr a c t i t i o n e r s resulted i n informants discounting unconventional treatments as a viable option or adjunct to conventional treatments. In summary, the benefit to treatment seemed to be contingent to some degree upon the nature of the s e t t i n g within which treatment occurred. In-hospital treatments were of least benefit to informants because the environment i t s e l f was an a r t i f i c i a l one, quite removed from t h e i r perceived r e a l i t y . Though hospitals offered the professional support of d i e t i t i a n s , psychotherapists, physicians, nurses and s o c i a l services, p r a c t i t i o n e r s on wards other than eating-disorder wards seemed to know l i t t l e about AN and optimal treatment for AN. Because of the focus i n hospitals on weight gain, the t r a n s i t i o n between hospital and community treatment programs was often very d i f f i c u l t for the informants i n t h i s study. Achievements made in hospitals were e a s i l y l o s t and waiting l i s t s for community-based treatment programs are long. Once accessed, community treatment programs such as day programs 150 and community t r a n s i t i o n homes were of greatest benefit to the informants i n t h i s study (provided they did not copy the hospital s e t t i n g ) . There, a focus on issues at the root of the AN and an i n c l u s i o n of peers and family i n the treatment plan supported hope for recovery, not just weight gain. Q u a l i t i e s of Pr a c t i t i o n e r s According to the informants, p r a c t i t i o n e r s of treatment for AN include d i e t i t i a n s , general medical p r a c t i t i o n e r s , medical i n t e r n i s t s , "mental health workers", occupational therapists, p s y c h i a t r i s t s , psychologists, registered nurses, registered p s y c h i a t r i c nurses, and s o c i a l workers. Although recognizing that t h i s study has a registered nursing focus, the informants both i m p l i c i t l y and e x p l i c i t l y alluded to the educational background of the p r a c t i t i o n e r s being less important than the personal q u a l i t i e s that she/he possesses. According to the informants, no one d i s c i p l i n e stands out as being more e f f e c t i v e than another during the course of treatment for AN but, for each informant, c e r t a i n i n d i v i d u a l s whose personal s k i l l s matched t h e i r professional a b i l i t i e s helped a great deal. In both the i n i t i a l tape-recorded interviews and i n the follow-up interviews conducted for purposes of c l a r i f i c a t i o n , informants claimed that the q u a l i t i e s of p r a c t i t i o n e r s influenced t h e i r treatment experiences more than did the therapies or the settings. On no other subject during the 151 interviews was the nature of informant's perceptions of treatment more dichotomous. That i s , p r a c t i t i o n e r s were either good or bad providers, never i n between: "Either they can help me or they can't. If I think that the nurse or doctor or whoever i s n ' t nice then I don't even bother to t a l k to them". Informants tended to s c r u t i n i z e p r a c t i t i o n e r s , generally commenting on t h e i r appearance, gestures, verbal tone, degree of eye contact, concentration, posture, and t h e i r interactions with other patients and colleagues. As a r e s u l t , they were able to provide detailed descriptions of what they f e l t amounted to e f f e c t i v e and i n e f f e c t i v e p r a c t i t i o n e r s . Regardless of the d i s c i p l i n e , a l l informants described p r a c t i t i o n e r s within two very d i s t i n c t categories. I have c l a s s i f i e d and labeled these categories as e i t h e r expert p r a c t i t i o n e r s or orthodox technicians. Expert P r a c t i t i o n e r s According to informants, expert p r a c t i t i o n e r s were described as health care p r a c t i t i o n e r s who had fostered hope for t h e i r patients' recovery. The d i s c i p l i n e of the p r a c t i t i o n e r was not as relevant as the rapport that the informants established with them. According to informants, of the three q u a l i t i e s — knowledge, c l i n i c a l experience, and empathy — a good p r a c t i t i o n e r had the f i r s t , a very competent p r a c t i t i o n e r had the f i r s t two, and an expert had a l l three. Expert p r a c t i t i o n e r s inspired confidence because 152 they communicated t h e i r knowledge, c l i n i c a l experience and empathy ver b a l l y and nonverbally. Knowledge Informants often encountered health care students and professionals a l i k e who had worked on medical wards, general p s y c h i a t r i c wards and/or p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s but who for the most part had not received an optimal l e v e l of formal education related to eating disorders. For informants, a comprehensive knowledge of eating disorders — indeed-, formal education i n t h i s area — was necessary for expertise i n the f i e l d . As one informant conveyed, It becomes r e a l l y obvious very quickly who has dealt with eating disorders and who hasn't. They don't r e a l i z e how i t a f f e c t s people who have an eating disorder psychologically. A l l they see i s someone on an NG tube, being given trays of food, an e l e c t r o l y t e solution, and t r a n q u i l i z e r s . When contrasting medical and eating-disorder wards, informants c r i t i c i z e d the lack of knowledge-that p r a c t i t i o n e r s on medical wards, general p s y c h i a t r i c wards and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s displayed regarding the amounts and types of medications required during the refeeding process. On the other hand, knowledgeable p r a c t i t i o n e r s were perceived as being well informed about the type, amount, and frequency of medications needed to r e l i e v e anxiety and sedate informants during h o s p i t a l i z a t i o n s . Informants noted that knowledgeable p r a c t i t i o n e r s were able 153 to genuinely communicate to informants admitting when they did not have a l l the answers or when they had made mistakes. Sometimes knowledgeable pr a c t i t i o n e r s supplied an informant with an i n s p i r i n g biography about AN oir recommended a s t i r r i n g movie. These sorts of behaviors made i t possible for informants to have confidence i n the p r a c t i t i o n e r s . A l l of the informants pointed out that p r a c t i t i o n e r s who were knowledgeable recognized the need to understand people with AN, at the very least they wished to understand what t h e i r patients were tr y i n g to say. Knowledgeable p r a c t i t i o n e r s used e x p l i c i t , d i r e c t , and verbal cues to convey that they were knowledgeable regarding AN. They were punctual with appointments, prescribed and/or administered medications c o r r e c t l y , and were able to recegnize what stage i n recovery an informant was at and what types of treatment would be most suited to her at a s p e c i f i c time. These p r a c t i t i o n e r s demonstrated a genuine i n t e r e s t i n the informants, acknowledging t h e i r i n d i v i d u a l i t y . Further, those thought to be knowledgeable p r a c t i t i o n e r s conveyed a nonjudgemental approach to the informant and her peers as well as to t h e i r own colleagues; they appreciated how l i t t l e i s known about AN and how much more they needed to understand to help informants. According to informants, such p r a c t i t i o n e r s recognized that part of the expert knowledge was obtained through c l i n i c a l experience, and these 154 p r a c t i t i o n e r s were not a f r a i d to communicate t h i s to informants. As one informant stated, The best help would come from a nurse who comes forward and says, 'you know, I'm r e a l l y sorry, but I don't know a l o t about eating disorders yet, but I'd love to hear more about i t ' , — [rather] than pretending l i k e she knows a l l there i s to know about i t . \ Being honest and genuine with informants seemed to e s t a b l i s h tremendous c r e d i b i l i t y . C l i n i c a l Experience P r a c t i t i o n e r s whose comprehensive knowledge base was embellished with substantial c l i n i c a l experience i n t r e a t i n g AN were perceived by informants as very competent. One informant offered that she was able to witness the t r a n s i t i o n of a nurse from novice to expert. The nurse i n question had been hired i n the hospital setting at the same time the informant was admitted. One year l a t e r the informant was readmitted to the same ward: the nurse, once i n f l e x i b l e and distant (for example, drawing up a d a i l y schedule for the informant that met with the nurse's needs), was now relaxed and concerned (for example, setting p r i o r i t i e s with the informant that were mutually agreed upon). Informants concluded that c l i n i c a l l y experienced p r a c t i t i o n e r s recognized the importance and value of timing. For instance, they knew when to l i s t e n to an informant, when to provide her with feedback, and when to challenge her. Further, they 155 recognized the type, i n t e n s i t y , and frequency of psychotherapy that was required. Positive perceptions of various psychotherapies were most often accomplished through one-on-one in t e r a c t i o n with the p r a c t i t i o n e r s . Interaction was most often i n the form of discussion, although (with the ri g h t person.and the ri g h t timing) touch was valued. Arranging a time to ta l k and following through with t h i s commitment was g r a t e f u l l y appreciated by informants, and when these things happened, a sense of trust was established between the informant and the p r a c t i t i o n e r . As one informant explained, A nurse I know i s miles ahead of any of the other s t a f f . When you ta l k to her you can t e l l from the feedback that she's giving you that she's a c t u a l l y l i s t e n i n g to you. She gives good advice and comments that she makes are things that I've heard from other s p e c i a l i s t s , and everything they've taught her, and everything that she's learned from the others [ s p e c i a l i s t s ] , she retains and uses that information again on other people. That's very reassuring when you can ta l k to somebody l i k e that who you f e e l l i k e they know what they're t a l k i n g about and you want to get reassurance from that type of person. C l i n i c a l l y experienced p r a c t i t i o n e r s were able to f i n d the aspects of the informant's AN that were common to a l l indivi d u a l s with AN. She or he was also able to handle each s i t u a t i o n as i t arose i n a calm and reassuring manner. Three informants described events i n t h e i r treatment where an inexperienced p r a c t i t i o n e r had responded to a small problem 156 with medications or assertive commands. In a l l cases, the small problem soon escalated into a major c r i s i s . At that point, an experienced p r a c t i t i o n e r intervened and was able to draw on her/his c l i n i c a l expertise to r e c t i f y the problem without medications or commands. Informants indicated that sometimes simple responses such as a back rub or a discussion over a cup of coffee could help them put a problem into perspective and soothe them. Informants described c l i n i c a l l y experienced p r a c t i t i o n e r s as f l e x i b l e . S p e c i f i c a l l y , they were able to f a c i l i t a t e p a r t i c i p a t i o n and foster emancipation within informants. They seemed to know when an i m p l i c i t or e x p l i c i t " rule" promoted recovery and prevented deception, a knowledge most evident when they were encouraging informants to eat. That i s , c l i n i c a l l y experienced p r a c t i t i o n e r s knew when to gently persuade and/or negotiate with an informant. Further, they knew when to praise an informant for an accomplishment and when to remain s i l e n t . F i n a l l y , i f an informant confessed to not following an agreed upon treatment, a c l i n i c a l l y experienced p r a c t i t i o n e r knew how to avoid behavior that conveyed disapproval and punishment and how to behave i n a way that focused on the pos i t i v e a b i l i t i e s that the informant had accomplished. 157 Empathy A professional who had a comprehensive knowledge base, J c l i n i c a l experience and empathy was described as expert. Informants had interacted with p r a c t i t i o n e r s of various d i s c i p l i n e s and i n a l l settings of t h e i r journey to recovery; they praised or c r i t i c i z e d p r a c t i t i o n e r s depending on t h e i r a b i l i t y to convey empathy. Being avai l a b l e , dependable, r e l i a b l e , and consistent were a l l viewed by informants as aspects of empathy. Nurses who did not follow through on what they had committed to were thought unreliable. P s y c h i a t r i s t s who were not avail a b l e and who had not arranged a backup plan to ensure that informants had support i n the event of a c r i s i s were perceived as not dependable. Pr a c t i t i o n e r s who established an i n t e r a c t i v e r e l a t i o n s h i p with t h e i r c l i e n t s were perceived, by informants, as empathetic. Informants reported experiences i n which p r a c t i t i o n e r s a c t i v e l y participated i n conversations and were perceived as energetic, dynamic, and optimistic people. One informant related, " A l l I wanted was for someone to hold me, someone to l i s t e n to me, and to understand. And r e a l l y f e e l l i k e I was li s t e n e d to and heard, and [treated l i k e ] I was an equal". Informants agreed that an empathetic p r a c t i t i o n e r was one who spent time with informants, a c t i v e l y l i s t e n e d to what 158 they said, and conversed with them i n a patient, confident, and sincere manner. Those f e l t to be empathetic p r a c t i t i o n e r s consistently provided hope for recovery to informants without ever posing threats or consequences as a means to compliance and recovery. S p e c i f i c a l l y , they projected the b e l i e f that recovery was not transient or dubious but that i t was always imminent for informants. As one informant said, "When I meet someone who i s able to just recognize that I e x i s t , that my problem i s r e a l , and that there i s hope and that there i s treatment ava i l a b l e , then I know that I can tr u s t them". Further, empathetic p r a c t i t i o n e r s were able to convince an informant to believe i n herself; treatments could f a c i l i t a t e recovery but an informant's "own inner s p i r i t " would ultimately lead her to recover. Indeed, empathy i n a p r a c t i t i o n e r was the single most helpful c h a r a c t e r i s t i c when d i f f i c u l t treatments had to be endured. A t r u l y expert p r a c t i t i o n e r could support the informant through almost anything, whether i t was naso-gastric tube feedings, being c e r t i f i e d , being challenged to eat meals, or being restrained. I r o n i c a l l y , even these treatments were viewed as b e n e f i c i a l when executed by empathetic, knowledgeable, and experienced p r a c t i t i o n e r s . Further, informants maintained that learning to cope with personal issues at the root of 159 t h e i r AN was most often tackled by expert p r a c t i t i o n e r s and ignored by others. Orthodox Technicians In contrast, an orthodox technician according to informants, i s a p r a c t i t i o n e r who would not f a c i l i t a t e an e f f e c t i v e treatment. Orthodox technicians could be found i n a l l of the settings, d e l i v e r i n g a l l of the treatments. Not only were such p r a c t i t i o n e r s perceived as i n e f f e c t i v e , they were also f e l t to be detrimental to the entire treatment process. Sometimes experiences with orthodox technicians i n a s p e c i f i c d i s c i p l i n e tainted an informant's impression of an enti r e d i s c i p l i n e of p r a c t i t i o n e r s . One informant explained, "I had t e r r i b l e experiences with the p s y c h i a t r i s t and the nurses, therefore I don't trust any of them". Informants described p r a c t i t i o n e r s who f e l l into the orthodox technician category as v a c i l l a t i n g between an a f f e c t i v e i n d i f f e r e n t or an authoritarian approach. Because orthodox technicians existed wherever informants sought treatment, they could never predict when a p r a c t i t i o n e r was going to represent hope for recovery. An a i r of suspicion always accompanied t h e i r request for help. A f f e c t i v e Indifference A l l informants spoke of interacting with p r a c t i t i o n e r s who seemed to'be more interested i n , as they put i t , having a job for i t s own sake than having a career i n " a l l e v i a t i n g the 160 s u f f e r i n g , preventing AN, and finding a cure". These pr a c t i t i o n e r s were described as "always preoccupied with being paged, completing t h e i r charting, or being conscious that my [informant's] time was up u n t i l the next appointment". As well, a f f e c t i v e l y i n d i f f e r e n t p r a c t i t i o n e r s were less r e l i a b l e with regard to appointments and a v a i l a b i l i t y (and were often delayed lengthy periods). Most informants claimed that these pr a c t i t i o n e r s were "just f i l l i n g i n t h e i r time u n t i l the moment was complete, the s h i f t had ended, or the day was over". Informants had a l l experienced a f f e c t i v e i n d i f f e r e n t p r a c t i t i o n e r s across a l l d i s c i p l i n e s . According to informants, these p r a c t i t i o n e r s were a f f e c t i v e l y i n d i f f e r e n t because they played a very passive ro l e i n treatment, an attitude most obvious during discussions between the informant and the p r a c t i t i o n e r . Two informants described conversations i n which they f e l t "psycho-jargon" was prevalent. One informant asserted, There's something about i t , when you t a l k to somebody who just keeps nodding t h e i r head and agreeing with you, and I'd say I f e e l t h i s way. 'Yes, yes, yes, oh, well, I hear you, unhuh, what are you going to do?' Or she would say 'Is that so, what I hear you saying i s t h i s ' . Well that's the response you get from her. And I don't f e e l l i k e I'm being heard when someone responds l i k e that. And I don't f e e l l i k e they can help me. And i t just makes me think I'm wasting my time and I want to get away. That does not help. 161 Informants found p r a c t i t i o n e r s to be a f f e c t i v e l y i n d i f f e r e n t when they negated t h e i r feelings and were predominately oriented toward tasks, medical treatments or research. Informants spoke of nurses tending to^ t h e i r NG tubes without t a l k i n g to them, they spoke of physicians focusing on t h e i r s k i n f o l d measurements rather thanvtheir fee l i n g s , and they discussed psychologists s o l i c i t i n g them to p a r t i c i p a t e i n research studies as part of t h e i r treatment plan. I n i t i a l l y informants were surprised by t h i s behavior; f i n a l l y they became frustrated and resigned as i t became the norm. When informants had encountered a f f e c t i v e i n d i f f e r e n t p r a c t i t i o n e r s many times, e s p e c i a l l y across d i s c i p l i n e s , they f e l t a sense of hopelessness for recovery. Qne informant f e l t that of a l l the p r a c t i t i o n e r s she had encountered during four years of treatment, she was only able to c i t e a single psychologist who gave her hope for recovery; i n contrast, she spoke of h o r r i f i c experiences with p s y c h i a t r i s t s , registered nurses, registered p s y c h i a t r i c nurses, and d i e t i t i a n s . Informants saw p r a c t i t i o n e r s as a f f e c t i v e l y i n d i f f e r e n t when they hid s i n c e r i t y . Such pr a c t i t i o n e r s said things l i k e , . "And how are we today, dear?" or, "You're looking much better today, you have color i n your cheeks" day a f t e r day u n t i l the phrases became redundant c l i c h e s . Their words were perceived as empty and t h e i r actions were nonchalant. Often, they were maladroit around the informant. One informant said, "They 162 r e a l l y didn't know what to say to me. They had no idea what to say to me. And I think they f e l t awkward themselves because they didn't know how to care for me". Though a f f e c t i v e l y i n d i f f e r e n t p r a c t i t i o n e r s could be found anywhere, informants claimed that t h i s attitude was p a r t i c u l a r l y prevalent on medical and general p s y c h i a t r i c wards and i n p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s . When pr a c t i t i o n e r s had such an attitude, i t seemed that informants and p r a c t i t i o n e r s a l i k e f e l t the resentment at having to int e r a c t with each other. Authoritarian Approach The most painful experiences described by informants were those involving p r a c t i t i o n e r s who projected an authoritarian approach. An authoritarian approach was more frequently applied to p r a c t i t i o n e r s i n hospital settings, e s p e c i a l l y on medical and general ps y c h i a t r i c wards and i n p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s . According to i n f o r m a n t s a u t h o r i t a r i a n p r a c t i t i o n e r s are those who manipulate with force and who say things l i k e "I am making you do t h i s for your own good." One informant described a nurse observing her while restrained and yet never attempting to ta l k to her or f a m i l i a r i z e herself with her i n any way. Another informant commented on how her p s y c h i a t r i s t "psychoanalyzed" every behavior that she exhibited "acting as i f he knew i t a l l " rather than 163 recognizing that some of the behaviors may be p e r f e c t l y normal for the p a r t i c u l a r culture and age group that she was i n . The case i n point was her p s y c h i a t r i s t ' s i n t e r p r e t a t i o n of the informant's pierced b e l l y button as being a symbol of se l f - m u t i l a t i o n because of s e l f - l o a t h i n g related to her stomach, as opposed to conforming to the pop culture. Sometimes the authoritarian approach was exhibited i n aggressive and threatening behaviors: "either you comply with the treatment or suffer the consequences". One informant described a s i t u a t i o n i n which the p s y c h i a t r i s t on c a l l i n the hospital c e r t i f i e d her and placed her i n seclusion ( a l l v i s i t o r s including family members were r e s t r i c t e d from contacting the informant) for four days without receiving any psychotherapy. According to the informant, the p s y c h i a t r i s t ' s r a t i o n a l e was that the informant needed time alone i n order to r e f l e c t upon her l i f e . I r o n i c a l l y , t h i s informant l i v e d an anorexic l i f e of i s o l a t i o n and seclusion i n her home. Another informant described an authoritarian nurse: This nurse came across as being extremely aggressive, u t t e r l y i n control. She would not l i s t e n to anything I was t e l l i n g her and she would not give me c r e d i t for being able to t e l l her what was the best way to help me. It was just t e r r o r i z i n g , mind bending, to be i n that p o s i t i o n . Most importantly, p r a c t i t i o n e r s using authoritarian approaches never ac t u a l l y helped patients move towards 164 recovery of AN; they merely won the battles they set out to win, getting patients into r e s t r a i n t s and through treatments. According to informants, orthodox technicians projected the c h a r a c t e r i s t i c s of a f f e c t i v e l y i n d i f f e r e n t and authoritarian p r a c t i t i o n e r s onto t h e i r relationships within d i s c i p l i n e s and across d i s c i p l i n e s . Informants described situations i n which they witnessed countless h o s t i l e or antagonistic occurrences between p r a c t i t i o n e r s . S p e c i f i c a l l y , p r a c t i t i o n e r s covertly and overtly denounced t h e i r colleagues i n front of informants: that i s , nurses c r i t i c i z e d p s y c h i a t r i s t s to informants, p s y c h i a t r i s t s rebuked nurses i n front of informants, and those i n one d i s c i p l i n e undermined the treatment e f f o r t s of those i n another d i s c i p l i n e . As a r e s u l t , informants were often confronted with vituperative behaviors exhibited by p r a c t i t i o n e r s s i m i l a r to behaviors that they had witnessed i n t h e i r personal l i v e s . When available, expert p r a c t i t i o n e r s f a c i l i t a t e d a treatment experience that was r i f e with hope and p o s s i b i l i t y . However, informants tended to encounter orthodox technicians within a l l settings of t h e i r treatment experience. Thus, t h e i r journey towards recovery was often thwarted by hopelessness, f r u s t r a t i o n and resignation. Summary In t h i s chapter, the findings were presented and interpreted based on the descriptions of the treatment 165 experience for AN as t o l d by f i v e informants. Informants were exposed to a number of inconsistent treatments i n a v a r i e t y of settings. Although recovery from AN was the desired goal for a l l who took part i n t h i s study, because they were always dependent on accessing and sustaining treatments, informants claimed that the most that they could r e a l i s t i c a l l y secure was the hope that one day recovery would be achieved. Overall, informants described many challenges and few benefits to treatment. The treatment experience was permeated by three conditions: the a c c e s s i b i l i t y of programs and p r a c t i t i o n e r s , the q u a n t i f i c a t i o n of progress, and the medicalization of the AN p l i g h t . The perceived challenges and minimal benefits to treatment seemed to rest on the waiting l i s t s that informants were forced to endure; the types of treatment that were offered such as refeeding and a c q u i s i t i o n of s k i n f o l d measurements alone, without psychotherapy; and the resignation or dependency both mentally and p s y c h i c a l l y that informants placed on the hope that medications would greatly improve t h e i r s i t u a t i o n s . The q u a l i t y of the treatment experience was also influenced by the setting i n which treatment occurred. Settings such as eating-disorder wards and community t r a n s i t i o n homes seemed to be of most benefit because expert p r a c t i t i o n e r s were r e a l i s t i c and supportive. The informants 166 highlighted the impact of the setting — medical wards, general p s y c h i a t r i c wards and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s — on the treatment experience. Although informants did not generally r e l a t e p o s i t i v e descriptions of i such settings, they emphasized that receiving some treatment was better than receiving no treatment at a l l . Ultimately though, the description of the treatment experience for AN i s contingent upon the q u a l i t i e s that a p r a c t i t i o n e r possesses above a l l other aspects of treatment. It seems that most pr a c t i t i o n e r s of care are orthodox rather than expert. With expert p r a c t i t i o n e r s a sense of t r u s t and hope were often equated with p o s i t i v e treatment experiences, making the best hope for recovery. Conversely, orthodox p r a c t i t i o n e r s were thought to prolong the AN and even worsen i t because of t h e i r indifference and authoritarian s t y l e s i n r e l a t i n g to the informants. Thus, the findings suggest that, at times, individuals who have AN receive an orthodox and unevaluated q u a l i t y of care. When treated i n an orthodox manner, informants i d e n t i f i e d many challenges and few benefits to treatment with only a moderate chance for recovery. Chapter Five presents a discussion of the findings. F i n a l l y , Chapter Six presents a summary, conclusions and implications for nursing research, practice, education and s o c i a l p o l i c y . 167 CHAPTER FIVE: DISCUSSION OF FINDINGS Introduction In t h i s chapter, I discuss selected findings of the study, p a r t i c u l a r l y those which focus on the q u a l i t y of care that indi v i d u a l s receive; the effectiveness of treatment for in d i v i d u a l s ; and the relevance of treatment to expanding the professional understanding of the general nature of the phenomenon. These findings are disturbing i n that they highlight the obstacles individuals with AN face. In an exploration of these obstacles to recovery, several problems i n the care of individuals with AN are noted: s a l i e n t gaps ex i s t i n the system; the ide o l o g i c a l perspectives and behaviors of pr a c t i t i o n e r s who provide conventional treatments are often not conducive to recovery and may even be detrimental; and norms entrenched within the system f a c i l i t a t e the medicalization of what perhaps should be regarded as a social/psychological phenomenon. After e s t a b l i s h i n g the existence of obstacles to recovery, the chapter turns to the concerns of the consumers of conventional treatments. These concerns include the disregard for i n d i v i d u a l i z e d treatments and the lack of ex p e r i e n t i a l and complimentary therapies u t i l i z e d i n treatment. F i n a l l y , the discussion moves to discovering why individuals continue to access conventional treatments i n the face of a l l i t s controversy and c r i t i c i s m . 168 0 A l l i ndividuals i n t h i s study experienced some degree of disappointment and discouragement regarding t h e i r treatment for AN, whether i n hospital programs or community-based programs. While some were l e f t f e e l i n g worthless and hopeless a f t e r treatment because they had been discharged from a program for not gaining an a l l o t t e d amount of weight, others were kept i n hospital u n t i l they had regained that weight. None were taught relaxation techniques that would f a c i l i t a t e eating; rather, sedations were used cloaking the experience of eating with resignation and detachment. The o v e r a l l success of the programs was thwarted by obstacles. The q u a l i t y of care i n each case was reduced by the general focus on observable measures l i k e weight, a focus that l e f t the less observable issues beneath each individual's condition i n the dark, untreated. Obstacles To Recovery This study led to a reaffirmation of claims made by many experts and consumers a l i k e that obstacles e x i s t which diminish the q u a l i t y of the treatment offered, impede recovery, and may even worsen the health of AN for some individu a l s (Dunbar, 1986; Geary, 1988; Goldberg, 1994; Lambley, 1983; Lawrence, 1984). Three obstacles were i d e n t i f i e d by the women in t h i s study; 1) the gaps i n the system, 2) people within the system, and 3) the medicalization df a social/psychological phenomenon. 169 t Gaps In The System As developed i n the l i t e r a t u r e review, the incidence of AN i s on the r i s e (Lucas, Beard & O'Fallon, 1991); i t cannot be remedied i n the short-term (Hsu, 1980); and, l o n g i t u d i n a l studies reveal that only a small percentage of AN sufferers recover (Herzog, Rathner & Vandereyken, 1992; Woodside, 1995) . Most experts concur that AN i s a complex, multi-f a c t o r i a l condition that requires multiple approaches to treatment (Freeman & Newton, 1992; Love & Seaton, 1991). S t i l l , i t i s unclear whether the condition has complexities that inherently compromise recovery, or whether the approaches to treatment are unsuitable for the nature of AN. Presently, two p a r t i c u l a r l y troubling gaps e x i s t i n the conventional system for the treatment: the d i s c o n t i n u i t y of services and the l i m i t e d resources. Both gaps diminish the q u a l i t y of care and l i m i t the effectiveness of treatment i n terms of recovery from AN. Discontinuity of Services As i s i l l u s t r a t e d i n the lay l i t e r a t u r e (Ardell & A r d e l l , 1985; Dunbar, 1986) and illuminated i n the findings, the d i s c o n t i n u i t y of services i s revealed i n the unpredictable nature of the treatment experience. Issues of d i s c o n t i n u i t y of services include the d i f f i c u l t y consumers have i n accessing treatments, and the d i f f i c u l t y that they have i n sustaining treatments whose philosophical bases are s i m i l a r 170 across environments aimed to provide high q u a l i t y care leading to recovery. Perhaps the biggest gap i n services exists at the entry point. Accessing any type of treatment i s apparently never without the agonizing experience of waiting. Regardless of the p r a c t i t i o n e r , the program, or the f a c i l i t y , informants always waited a considerable amount of time to be admitted. The waiting c a r r i e d , for informants, a sense of u n p r e d i c t a b i l i t y . And since i n i t i a l treatments were also unpredictable, informants never f e l t i n c o n t r o l v o f the d i r e c t i o n of t h e i r care and recovery. Each p r a c t i t i o n e r i n the chain of many involved with each informant could propel her i n any number of directions depending on the i d e o l o g i c a l perspective of that p r a c t i t i o n e r and the services a v a i l a b l e at the time they were needed. Even though AN can be l i f e -threatening, the severity of the AN was not always the decisive factor leading to the type of treatment an informant began; rather, the a v a i l a b i l i t y of a treatment was often the deciding factor. As mentioned i n Chapter Two, both the l i t e r a t u r e (scholarly and lay) and the informants i n t h i s study a t t e s t to the b e l i e f that community-based programs incur less costs and have greater effectiveness i n terms of recovery than hospital settings (Freeman, Shapiro, Morgan & Engliman, 1990; MacLeod, 1981; Waskett, 1989). For the l a s t decade, within 171 the conventional health care system, an emphasis on community-based services to treat mental conditions rests on the notion that individuals learn more e a s i l y to care for themselves i n a less acute setting than a hospital can provide (Bachrach, 1994). Although consumers and p r a c t i t i o n e r s a l i k e endorse t h i s philosophy, the resources e x i s t i n g i n the community have always been li m i t e d (Bachrach). Informants explain that programs that could help them carry sizable waiting l i s t s . Further, the programs are often l i m i t e d i n t h e i r duration, thus, informants were not able to accomplish the goals they anticipated within the a l l o t t e d time frame. Reasons for limited treatments are unclear although cost containment and a desire to reach more individu a l s are plausible explanations. Research on the issues surrounding appropriate duration for various community programs does not yet appear i n the l i t e r a t u r e , causing one to assume that none has been conducted for most programs. Hence, i t can be assumed that the majority of i n d i v i d u a l s do not have access to the excellent care that i s offered i n innovative community-based programs (Bachrach). Another gap within the health care system revealed by the findings i n t h i s study i s that between the philosophical environments of hospital and community-based programs. A l l too often, informants described having to accommodate for the differences between the two settings i n terms of the philosophies of p r a c t i t i o n e r s , design of programs, and f o c i of treatments. Further, many informants found themselves unable to sustain a treatment i n d e f i n i t e l y that was covered f i n a n c i a l l y under the Canada Health Care Act. These women reported being unable to expect q u a l i t y and consistent care across environments that covered costs through the p r o v i n c i a l health plans. Many hospitals do not have s p e c i a l l y trained experts i n AN (Gowers, Norton, Halek & Crisp, 1994). Thus, consumers are often admitted to a general ps y c h i a t r i c ward or even a medical ward where the focus i s on refeeding and weight gain. S i m i l a r l y , when one informant was admitted to a l o c a l h o spital within her community while she waited to be accepted into an eating-disorder program, she received treatment that was l a r g e l y inconsistent with and perhaps contradictory to. that which she experienced l a t e r when accepted into the f a c i l i t y s p e c i a l i z i n g i n eating disorders. A lack of consistency amongst some hospital-based programs s p e c i a l i z i n g i n AN leads to the employment of various methods of behavior modification. A consumer may be * subjected to a vari e t y of these approaches as she i s transferred from one f a c i l i t y to another. Some f a c i l i t i e s r e l y heavily on s t r i c t behavior modifications, others on lenient behavior modifications (Solanto, Jacobson, H e l l e r s , Golden & Hertz, 1994). While consumers move from one f a c i l i t y 173 to another for any number of reasons, issues of consistency never seem to be one of those reasons. If a p s y c h i a t r i s t does not have hospital p r i v i l e g e s and his/her c l i e n t requires h o s p i t a l i z a t i o n , the c l i e n t may receive care under a d i f f e r e n t p s y c h i a t r i s t with a very d i f f e r e n t approach to care. This was the case with three informants who p a r t i c i p a t e d i n the study. According to informants, those in d i v i d u a l s who are used to seeing therapists (psychologists and counselors) i n the community w i l l l i k e l y f i n d a very d i f f e r e n t treatment philosophy i f and when they are admitted to an i n s t i t u t i o n . A f t e r being discharged from the hospital s e t t i n g , consumers should t h e o r e t i c a l l y be involved i n community-based programs that have threads i n common with hospital treatments i n x o r d e r to maintain continuity. In order for t h i s to occur, psychotherapy, the mainstay of treatment i n most community-based programs, should be provided as part of the hospital programs so that weight maintenance and weight gain are treated at the same time as underlying psychological issues. A lack of continuity of services i s one of the greatest gaps i n the system: from waiting for treatment, to experiencing the u n p r e d i c t a b i l i t y of treatment, to the chaos i n approaches. Such inconsistencies impede recovery by fragmenting an individual's experience of treatment from environment to environment. While many hospital-based programs, as described by informants, were c o n t r o l l i n g , r i g i d , safe, and u n r e a l i s t i c , community-based programs were f e l t to be autonomous and motivational. Yet, as Bachrach writes, "even partisans who strongly defend community-based mental health programs w i l l probably acknowledge that i t i s easier for patients to use available services i n h o s p i t a l -based systems of care where programs are l o c a l i z e d and administrative authority i s centralized" (1994, p. 6). The l i t e r a t u r e r e f l e c t s that treatment for AN has never r e f l e c t e d a h o l i s t i c approach. As consumers have maintained for years, attention must be given to the q u a l i t y of treatment offered to AN sufferers (Ardell & A r d e l l , 1985; Bordo, 1993; Brown, 1992; Brumberg, 1988; Gibson, 1983; Orbach, 1986). The extent to which inconsistencies i n treatment and philosophy a f f e c t s recovery must be studied i n order to support changes i n the e x i s t i n g system. Limited Resources The best explanation for the dis c o n t i n u i t y of services for AN i s that li m i t e d resources ex i s t for treatment. Such resources include the closing of programs or a shortening of the length of e x i s t i n g programs, the lengthy waiting l i s t s for access to expert p r a c t i t i o n e r s , a s h i f t i n philosophy from i n s t i t u t i o n a l i z e d care i n mental health to community-based health (without the accompanying d o l l a r s and programs i n the community), and limited resources available i n c r i s i s 175 s i t u a t i o n s . A l l these obstacles serve to decrease both the q u a l i t y of care and the effectiveness of the treatment for AN. A troubling finding from t h i s study i s the d i f f i c u l t y informants experienced i n accessing programs and expert p r a c t i t i o n e r s for treatment. Most d i s t r e s s i n g was the d i f f i c u l t y of accessing a bed, any bed, much less i n highly s p e c i a l i z e d areas such as eating-disorder wards. Also, once i n a bed, informants f e l t rushed toward discharge. Whether these experiences are d i r e c t l y or i n d i r e c t l y related to changes i n the Canadian health care system i s unclear; c e r t a i n l y informants i n t h i s study reasoned that t h e i r treatments were less than s a t i s f a c t o r y because of the budget ) cuts to health care. This opinion, they claimed, was formed from t h e i r own experiences and observations.within the system and echoed by p r a c t i t i o n e r s . As Sack (1993) observed, "Obstacles always loom larger during bad economic times" (p. E5). Indeed, the l i t e r a t u r e i s r i f e with anecdotes acknowledging the c r i s i s i n health care because of cost cutting measures (Prescott, 1993; Scott & J a f f e , 1991; Silver-Wells, 1987). But i n an era of budget crunching, / downsizing, restructuring and cost containment (Banning, 1992; Decter, 1994; Evans, 1992), whether we are r e a l l y saving d o l l a r s i n the long run i s questionable since hasty patient discharges seem to lead to repeated admissions. 176 Informants i n t h i s study a l l concurred that a hospital ward was the worst place to be admitted even when such admissions meant saving t h e i r l i v e s . While admission to hospital wards are necessary when a l i f e i s i n danger (Casper, 1982; Crisp, 1977), studies indicate that the weight gained i n a hospital s e t t i n g i s r a r e l y sustained (Freeman & Newton, 1992; Hsu, 1986). In addition, studies reveal that many types of mental conditions are not adequately dealt with i n the hospital s e t t i n g because of i t s structure (Grippin, 1991). Repeated admissions occur, sometimes because of a dependency on the treatment of refeeding. But, according to informants, experiences of gaining and losing weight are ultimately detrimental to t h e i r self-esteem and a b i l i t y to cope. Thus, a l l of the informants f e l t that health d o l l a r s spent toward t h e i r care i n the hospital s e t t i n g were for the most part i l l spent. According to the informants, perhaps the most noticeable area i n which services are limited i s within the community. Both t r a n s i t i o n houses and day programs are often able to provide refeeding programs, and while they provide various types of psychotherapy with good r e s u l t s , informants claim that spaces are inadequate to accommodate a l l who need the service. In Vancouver, two t r a n s i t i o n houses accommodate only 20 women at one time, and the waiting l i s t s for these houses 177 represent a wait from anywhere between three months to one year. F i n a l l y , c r i s i s intervention was seen by informants i n t h i s study to be limited. Not only i s a c r i s i s service for those with AN almost non-existent, but there i s l i t t l e mentioned about i t i n the l i t e r a t u r e . Most often, the development of AN i s gradual. However, when symptoms escalate to a state of c r i s i s , defined as "a perception of an event or s i t u a t i o n as an i n t o l e r a b l e d i f f i c u l t y that exceeds the resources and coping mechanisms of the person" ( G i l l i l a n d & James, 1993) help of a p a r t i c u l a r kind i s needed. A c r i s i s , characterized by an exacerbation i n physical symptoms and, to a lesser extent, psychological disturbances and interpersonal di s t r e s s e s , could occur before, during, or subsequent to any kind of treatment (Garner & Friedman, 1994). According to Garner & Friedman (1994), the aim of c r i s i s intervention should be to s t a b i l i z e the physical and mental condition of the i n d i v i d u a l . C r i s i s intervention for an AN sufferer includes normalizing eating and weight, redefining the problem(s) that lead to AN, confronting the reluctance to gain weight, helping the i n d i v i d u a l to i d e n t i f y b e l i e f s that i n t e r f e r e with the problem and f i n a l l y family intervention. Garner & Friedman advocate that most patients with AN have access to out-patient therapy where they meet two to three times per week with a therapist and enjoy telephone contact 178 between sessions. To Informants i n t h i s study, such a c c e s s i b i l i t y was hardly adequate. Under ideal circumstances, they claimed that c r i s i s intervention must be immediate, intense and focused. Informants maintained that they did not know where to turn for expert treatment when they needed to c a l l off hours. Most agreed that they might go to a l o c a l emergency department i n a serious c r i s i s but that they would not expect s p e c i a l i z e d treatment there. Although some emergency rooms do have experts i n AN avai l a b l e , which ones these are was not always known to informants. Thus, c r i s i s interventions for those with AN both i n the form of expert p r a c t i t i o n e r s i n emergency rooms and i n the form of counselors on the telephone c r i s i s l i n e s are sadly l i m i t e d yet absolutely required. With a l l levels of government facing unprecedented debt l e v e l s , themes of i n i t i a t i v e s for the 1990's include restructuring and downsizing the health care system. Organizational restructuring and downsizing has begun with a common objective of achieving organizational synergy: that i s , getting more for less (Mara, 1993, Roch, 1992). Woodside (1995) writes " with ... such resource-intensive treatments, e f f o r t s to demonstrate long-term e f f i c a c y of treatment for eating disorders are no longer optional" (p. 75). But, i n an atmosphere of downsizing, with a l l inter e s t groups vying for the few d o l l a r s l e f t , l i k e l y those with the weakest voices, 179 such as those with AN, w i l l receive the least resources for treatment. People Within The System The second main obstacle diminishing the q u a l i t y of the treatment experience and l i m i t i n g recovery from AN i s the lack of expertise among pr a c t i t i o n e r s within the system. A concern extensively documented both i n lay l i t e r a t u r e and feminist writings (Bordo, 1993; Lawrence, 1984; MacLeod, 1981; Wolf, 1990), and validated by the informants i n t h i s study, i s that p r a c t i t i o n e r s exercise both a r i g i d adherence to i d e o l o g i c a l perspectives often contrary to those held by informants and behavior apparently devoid of empathy. In the views of the women i n t h i s study, both of these : c h a r a c t e r i s t i c s of care served as obstacles which diminished the effectiveness of the treatment. Ideological Perspectives of Pr a c t i t i o n e r s An overview of the l i t e r a t u r e i n Chapter Two indicates that there are numerous well entrenched ideologies regarding the b i o l o g i c a l , psychological and s o c i o l o g i c a l aspects of AN. While most of the l i t e r a t u r e written by conventional p r a c t i t i o n e r s acknowledges the need to use a biopsychosocial approach to tre a t i n g AN, findings reveal that, most commonly indi v i d u a l s are ac t u a l l y treated using medical, quantitative, and behavioral modification approaches. Many p r a c t i t i o n e r s continue to adhere r i g i d l y to one id e o l o g i c a l perspective 180 when tr e a t i n g AN. As Lambley (1983) notes, p r a c t i t i o n e r s attempt to mold the in d i v i d u a l into a framework rather than to modify the framework to f i t the individual's needs. Of a l l the common approaches, findings showed that AN i s treated most often within a medical framework; that i s , people are often hospitalized, refed and medicated before they can be referred to a program within the community to receive psychotherapy. Under the medical approach, there i s a strong following for the qu a n t i f i c a t i o n of treatments. In his review of the l i t e r a t u r e from 1954 to 1978 evaluating the outcomes of AN a f t e r treatment, Hsu (1980) found that many studies neglected to discuss what he c a l l e d "psychiatric outcome" (p.1042) meaning behavioral outcome of treatments. In fact, most studies based the success of the treatments on " n u t r i t i o n a l outcome, menstrual outcome, and eating d i f f i c u l t i e s at follow-up" (p. 1042). Those that did evaluate p s y c h i a t r i c outcome found "only a small portion [of patients] who expressed no concern about t h e i r shape or weight .... Hardly any of the patients were free from neurotic f i x a t i o n s on body weight. This c h a r a c t e r i s t i c can p e r s i s t despite the subject having maintained a normal weight" (p. 1043). Recent studies s t i l l focus on the importance of the quantity of weight gained by the in d i v i d u a l and the duration that i t i s maintained rather than on whether the AN behavior p e r s i s t s (Woodside, 1995). 181 The obvious question i s why do p r a c t i t i o n e r s continue to place such importance on the quantifiable aspects of treatment when these so e a s i l y cover up the underlying problem(s). Obviously, psychiatric outcomes such as those derived through psychotherapy, experiential therapy and/or complimentary therapy are more subjective and harder to evaluate. Further, i t i s believed that a c e r t a i n l e v e l of weight restoration i s required before psychotherapy can be of benefit. However, t h i s has been disputed i n the lay l i t e r a t u r e , and informants themselves indicated that psychotherapy should begin concurrently with other treatments. As well, the economies of health care are such that i t i s less c o s t l y to refeed a person for three weeks i n a hospital milieu and o f f e r a limited amount of psychotherapy i n the community, than i t i s to o f f e r unlimited psychotherapy i n conjunction with refeeding within the community. S t i l l , l o n g itudinal studies indicate that, because weight gained during rapid refeeding i s transient and because psychotherapy i s not always available i n conjunction with refeeding, any s t r i d e s forward are quickly l o s t and the i n d i v i d u a l becomes part of the revolving door syndrome> costing more d o l l a r s i n the long run (Hsu, Crisp & Callender, 1992; Walford & McCune, 1991). F i n a l l y , as the gatekeepers to conventional treatments, many physicians support an empirical domain which treats AN by objective and quantifiable measures. This 182 ideology seems to be a d i f f i c u l t mold to break free of; thus much emphasis i s placed on the b i o l o g i c a l aspects of the condition even though many physicians i n the l i t e r a t u r e acknowledge that AN should be viewed from a biopsychosocial perspective. Many nurses, psychologists, and d i e t i t i a n s have also been educated within a empirical domain, preserving the trend toward quantifiable treatments. Perhaps the desire to a c t u a l l y see the r e s u l t s of treatment i s too strong to r e s i s t . , According to the l i t e r a t u r e , the behavioral modification approach i s s t i l l used by most p r a c t i t i o n e r s i n conventional treatment f a c i l i t i e s i n Canada (Canadian College of Health Record Administration, 1987; Woodside, 1995). A study by Glatter Nusbaum and Drever (1990) described i n Chapter Two attests to the notion that many nurses are i n favor of a behavioral modification approach to treatment. Some programs veer towards a more lenient approach as opposed to a s t r i c t approach to treatment. Most of the l i t e r a t u r e does indicate that a lenient approach i s the more e f f e c t i v e of the two (Touyz, BeumOnt, Glaum, P h i l l i p s & Cowie, 1984); most informants, however, regarded the approach as merely the better of two e v i l s . Behavioral modification, a f t e r a l l , focuses on a system of rewards or incentives for weight gain and 'good eating habits'. Here again, one's success i s defined by one's weight gain. Certainly, informants i n t h i s ( 183 study a r t i c u l a t e d that the more s t r i c t a p a r t i c u l a r treatment was the less e f f e c t i v e i t was i n the long run. They explained that not only did a s t r i c t program f a i l to meet the needs of the i n d i v i d u a l , but anything that was learned or accomplished was not applicable to the informant's r e a l i t y . S i l b e r , Delaney, & Samuels (1989) indicate that many insurance companies i n the United States are reluctant to pay for medical care to people with AN, believing that p s y c h i a t r i c and psychological care i s what i s e s s e n t i a l . While t h i s may be true, medical intervention i s unavoidable when an in d i v i d u a l with AN i s i n c r i s i s and needs a combination of medical and psychological supports. Whatever the i n t e n t i o n ( s ) , what must be avoided i s the perspective that AN can be treated using only medical, q u a n t i f i a b l e and behavioral approaches. Behaviors of Practitioners The informants i n t h i s study indicated that many vituperative behaviors are exhibited by p r a c t i t i o n e r s which r e s u l t i n a less than s a t i s f a c t o r y treatment experience and may even l i m i t recovery. Findings indicate that among the behaviors exhibited by p r a c t i t i o n e r s , the most destructive are a lack of empathy, a s p l i t i n ideologies among p r a c t i t i o n e r s , and a dichotomous approach to treatment. As was explained i n Chapter Four, a p r a c t i t i o n e r was viewed as an expert when she/he had achieved knowledge, 184 experience, and empathy. Lacks i n any of these q u a l i t i e s proved to severely impede the establishment of a professional rapport with an informant. Most informants stated that i t was a complete waste of t h e i r time to be with a p r a c t i t i o n e r who was not perceived as an expert. Findings i n t h i s study indicated that informants found few so-called experts because they lacked empathy. Asked how they defined empathy, informants offered that r e a l empathy, focused on i n s p i r i n g confidence and trust i n the informants themselves. As was revealed i n t h i s study, the consequences of a p r a c t i t i o n e r without empathy included: poor rapport with c l i e n t s because of a lack of trust; an unpredictable and often tumultuous re l a t i o n s h i p with c l i e n t s because of mistrust; a r e j e c t i o n of treatment by c l i e n t s which leads to a r e j e c t i o n of the p r a c t i t i o n e r ; diminished expectations of treatment by the c l i e n t because of a negative perception att r i b u t e d to the p r a c t i t i o n e r ; c l i e n t compliance with the short-term goals of treatment (such as refeeding) i n order to escape treatment sooner; uncooperative or unruly behavior by the c l i e n t i n response to a perceived lack of understanding or foresight demonstrated by a p r a c t i t i o n e r ; and a complete loss of hope for recovery by the c l i e n t accompanied by f r u s t r a t i o n and disappointment regarding the s k i l l s of the p r a c t i t i o n e r . Unfortunately, double-blinded co n t r o l l e d studies do not e x i s t that compare long-term outcomes of those 185 i n d i v i d u a l s who receive treatment from p r a c t i t i o n e r s thought to be expert and empathetic with those perceived to be without empathy. A second i n e f f e c t i v e set of behaviors exhibited by pr a c t i t i o n e r s surrounds the s p l i t t i n g that occurs across d i s c i p l i n e s and within d i s c i p l i n e s . S p l i t t i n g , defined for the purpose of t h i s study, i s a destructive i n t e r a c t i o n that polarizes p r a c t i t i o n e r s and leads to antagonistic encounters. Findings of t h i s study exposed reports of countless negative feelings among pr a c t i t i o n e r s that were witnessed by informants. Such behaviors l e f t informants f e e l i n g m i s t r u s t f u l and suspicious of the entire health care team. S p l i t t i n g within and amongst d i s c i p l i n e s i s documented both i n the medical and the nursing l i t e r a t u r e r e l a t e d to eating disorders. Within medicine, there i s an obvious s p l i t t i n g that occurs between p s y c h i a t r i s t s and other medical p r a c t i t i o n e r s regarding the optimal treatment of AN (Bryant-Waugh, Lask, Shafran & Fosson, 1992). There i s much debate within medicine about the value of forced tube feedings i n a hospital setting; an i n t e r n i s t may value the short-term benefits of tube feeds while a p s y c h i a t r i s t may recognize the long-term psychological complications of forced feedings. The patient being tube fed w i l l not fe e l the f u l l support of the p s y c h i a t r i s t i f she i s aware of his or her fee l i n g s . A study by Conrad, Sloan and Jedwabny (1992) showed that the main 186 reason why the s p l i t t i n g of care occurs i n place of a united front appears to be that p r a c t i t i o n e r s tend to avoid c o n f l i c t while enjoying control over t h e i r patient's treatments. Some pr a c t i t i o n e r s went so far as to create The Therapeutic Administrative S p l i t Model (T/ASM) (discussed i n Chapter Two) which divides care between nurses and physicians allowing both to function separately, even where contradictions might occur. Research has shown that p r a c t i t i o n e r s of d i f f e r e n t d i s c i p l i n e s usually agree on the goals of treatment for AN, restoring weight to a normal l e v e l i n conjunction with renewing psychosocial well being — but, they often f a i l to agree on the approach to accomplish t h i s end. Rather than p r a c t i t i o n e r s of a l l d i s c i p l i n e s functioning as a cohesive group with common plans for intervention, tu r f wars often resulted i n d i v i s i o n s i n the way treatments were conducted. The e f f e c t s of such s p l i t t i n g on the patients involved has not yet been studied. Davidson and Cosgrove (1991) discussed what they c a l l e d the ' d u a l i s t i c nature' exhibited by a woman with AN. That i s , the'woman experiences two separate r e a l i t i e s , the r e a l i t y of AN (death) and that of her d a i l y l i v e d r e a l i t y (the denial of death). What i s unclear i s whether d u a l i s t i c behavior within the i n d i v i d u a l i s preceded by, or subsequent to, or independent of s i m i l a r i n t e r a c t i v e s p l i t t i n g behaviors exhibited by p r a c t i t i o n e r s . Further, the question remains as 187 to whether such dualism within an ind i v i d u a l i s i n t e n s i f i e d because of an increased severity of her AN or an increased exposure to s p l i t treatments. Regardless of the answer, i t can be assumed that s p l i t treatments are counter-productive to an indiv i d u a l ' s recovery i n that such experiences must p a r a l l e l the dysfunction that often contributes to the AN behavior. A t h i r d set of behaviors contributing to a diminished q u a l i t y of care and limited recovery involve the dichotomous approach used by p r a c t i t i o n e r s . Informants claimed that they were cont r o l l e d by pr a c t i t i o n e r s at some points i n t h e i r treatment and abandoned at others. While the treatment of severe AN may necessitate taking control, the practice of taking control i n a l l aspects of the treatment of those with AN i s not supportable. Given that issues of control — r i g i d and compulsive behaviors — are linked to the condition of AN, i t i s small wonder that relinquishing control i s perceived by many people with AN as an obstacle i n recovery. When admitted to the hospit a l , most of a c l i e n t ' s a c t i v i t i e s are controlled — frormeating to going to the bathroom. While they reported signing written contracts allowing such care and agreeing to certa i n incentives, the informants i n t h i s study f e l t t h i s to be manipulation, poorly masking the control of pra c t i t i o n e r s i n that t h e i r only a l t e r n a t i v e was not to be admitted, again, abandonment. The 188 use of r e s t r a i n t s and seclusion, (optional i n approaches to treatment of AN) represented a complete loss of control and a f e e l i n g of being abandoned. According to T a r d i f f (1989), r e s t r a i n t s and seclusion are contraindicated unless used i n a behavioral approach where the ind i v i d u a l i s s u i c i d a l and such interventions might prove necessary to preserve l i f e . Sanger and Cassino (1984) describe such power struggles between nurses and patients on an eating-disorder ward. Not s u r p r i s i n g l y , power struggles over control issues often arose between p r a c t i t i o n e r s and informants i n t h i s study. I r o n i c a l l y , c o n t r o l l i n g behaviors among p r a c t i t i o n e r s seemed to mimic anorexic behaviors i n t h e i r r i g i d i t y and compulsiveness. While p r a c t i t i o n e r s may think themselves as consistent and o f f e r i n g a f a i r bargain (Garfinkel & Garner 1982; Glatter Nusbaum & Drever, 1990; T a r d i f f , 1989), the fact that they have a l l the power remains. Informants perceived that p r a c t i t i o n e r s could not be t r u l y empathetic without re l i n q u i s h i n g some, of t h e i r control, nor without diminishing some of the apparent abandonment. It i s astonishing, then, that many of the behaviors of pr a c t i t i o n e r s dealing with the treatment of AN p a r a l l e l the very behaviors that i n t e n s i f y AN. Certainly, those whose AN i s connected to s i m i l a r control issues within the family perceive the c o n t r o l l i n g elements of treatment i n e f f e c t i v e and even detrimental to recovery (Conrad, Sloan & Jedwabny, i . 189 1992). Whether the sense of abandonment (the product of professional control) that informants experienced occurred within treatment programs or following them, or both, they a l l stated t h e i r response to i t was to exercise t h e i r own control by way of reincorporating AN behaviors, thus perpetuating a vicious cycle. Thus, i t i s not d i f f i c u l t to understand the d u a l i s t i c nature of AN as described by Davidson & Cosgrove (1991) given the dichotomous circumstances of treatment. Medicalization of a Social/Psychological Phenomenon A t h i r d and f i n a l obstacle impeding the q u a l i t y of care and influencing the l e v e l of recovery deduced from t h i s study i s the existence of entrenched norms within the system that allow the dominance of medicalizing what i s possibly a social/psychological phenomenon. Many experts debate t h i s point, c i t i n g numerous empirical and descriptive studies i n d i c a t i n g that b i o l o g i c a l abnormalities (e.g., the r o l e of genetics and various neuropsychiatry abnormalities) predispose c e r t a i n individuals to AN (Kaplan, Sadock & Grebb, 1994). S t i l l , others (Giles-Banks, 1992, for example) concur that such abnormalities are most l i k e l y secondary to the AN and not the cause of i t . The implications for medicalizing AN rather than approaching i t from a social/psychological perspective include a dependency on the medical modality 190 which excludes c r u c i a l aspects of treatment that would otherwise gain our attention. The Medical Modality For the purpose of t h i s study, the medical modality refers to the entire conventional structure of the Canadian health care system i n which nurses, occupational therapists, pharmacists, physicians, psychologists, physiotherapists and s o c i a l workers a l l contribute to a r i g i d b i o l o g i c a l perspective of AN. Within the l i t e r a t u r e , there i s a paucity of material suggesting that a 'multidimensional approach' to AN should be practiced (Woodside, 1995, p. 73). This approach e n t a i l s viewing the in d i v i d u a l from a biopsychosocial perspective. However, findings show that the b i o l o g i c a l perspective i s the dominant approach to treatment. The predominant practices include medicating, refeeding and weighing practices, and/or i s o l a t i n g individuals with AN. According to the informants i n t h i s study, the lea s t controversial aspect of medicalizing AN i s the practice of prescribing and administering medications. Psychotropic medications (for mental conditions) are commonly prescribed and administered to individuals with AN (Woodside, 1995), including those who participated i n t h i s study. Prescribed and administered by physicians and nurses respectively to a l l e v i a t e depression, stimulate appetite, reduce anxiety, sedate during refeeding, a l l e v i a t e insomnia, and reduce 191 obsessive-compulsive behaviors (Woodside), these drugs address long standing problems with short-term r e s u l t s . Certainly, none of the drugs approached a cure for the underlying condition, Anorexia Nervosa. A great deal of l i t e r a t u r e i n a variety of d i s c i p l i n e s r e f l e c t s the b e l i e f that the benefits of medicating those with AN are high (Goldbloom & Kennedy, 1993; Wolfe, 1995). But, the psychological dependency that i s developed by many who take such medications i s , at best, unclear. In some cases, medications are prescribed and administered because nothing else seems to work. For example, two informants i n t h i s study were taking Resperidone (an antipsychotic for those e x h i b i t i n g psychotic behaviors) although they claimed that they were never psychotic. Often an i n d i v i d u a l i s hospitalized for"refeeding accomplished through tube feeds, and sedated during refeeding to f a c i l i t a t e t o l e r a t i o n of the infusion. However, while informants claimed that drugs did enable them to to l e r a t e the food and weight gain while hospitalized, they also,claimed they were unable to maintain the weight l a t e r because they never r e a l l y learned how to eat or to deal with t h e i r psychosocial problems. Perhaps p r a c t i t i o n e r s f i n d sedation s u p e r f i c i a l l y an easier route to the desired goal, for g e t t i n g that the ultimate goal i s to empower the in d i v i d u a l with AN by teaching/reteaching her how to eat comfortably. This study 192 revealed that informants f e l t torn between receiving sedation and engaging i n psychotherapy. The theory behind refeeding i s that an i n d i v i d u a l must weigh an optimal amount before she can concentrate and focus on any type of psychotherapy. Before emotional support comes renourishment. S t i l l the trauma of undergoing sedation, refeeding and both the loss of control and the abandonment associated with these may have a great e f f e c t on the success of psychotherapy. Much i s yet unknown. It may be that experiential and complimentary therapies during refeeding, such as poetry therapy, hypnosis, therapeutic touch, music therapy and massage therapy could prove conducive to long-term weight gain. Informants i n t h i s study a l l indicated that some form of therapy that focuses on an ind i v i d u a l ' s problems may indeed be of benefit at a l l stages of her treatments. Another controversial aspect of medicalizing AN concerns the quantity of the tube feeding and the rapid rate at which an i n d i v i d u a l i s refed. Many informants asserted that they were forced to take i n a cert a i n amount of nourishment within a three week to three month time frame or s u f f e r consequences. Often, t h i s regime entailed being tube fed at night accompanied by consuming three square meals per day. When one considers that, upon admission, many of the informants were consuming no more than coffee and a few cookies a day, i t seems astonishing to expect indiv i d u a l s to 193 t o l e r a t e such extreme quantities of food immediately'. There i s ample l i t e r a t u r e to demonstrate the dangers and complications of rapid refeeding, such as bloating and cardiac i r r e g u l a r i t i e s (Woodside, 1995). However, there i s l i t t l e l i t e r a t u r e that explores the psychological trauma that informants a l l f e l t was induced by rapid refeeding and/or the mandatory consumption of three square meals per day. Though none wanted to experience the consequences of refusing treatment, the long-term consequences of such pra c t i c e s , whether they be f r u s t r a t i o n and disappointment regarding one's i n a b i l i t y to maintain desired weight or a contrived fear of and dependency on the treatment, are indeed suffered. The extent to which individuals become dependent on tube feedings or even dependent upon p r a c t i t i o n e r s to 'supervise t h e i r eating' i s not addressed i n the l i t e r a t u r e . For one informant i n the study, the only means she had of t o l e r a t i n g nourishment was through tube feeds. She would go to the hospital d a i l y to receive tube feedings and commute d a i l y from her home to the hospital with a naso-gastric tube i n her nose. She described f e e l i n g humiliated yet dependent on t h i s p r a c t i c e . Another informant was able to eat three square meals per day while she l i v e d at a community t r a n s i t i o n home, under supervision, but she was unable to cope with regular eating practices on her own. Clearly, these informants were not learning how to improve t h e i r p l i g h t . Instead, they were 194 learning how to r e l y on pr a c t i t i o n e r s and the medical modality to maintain t h e i r i l l n e s s . One of the most appalling ironies of t h i s study was that, while AN i s understood to be a psychological disorder, unlimited and systematic weight checks were available as an ongoing service at an eating-disorder f a c i l i t y to a l l informants and unlimited and/or systematic mental health checks were not available to any of the informants. One can only speculate that the reasons have to do with funding and p r i o r i t i e s . Most of the l i t e r a t u r e indicates that weight gain i s not a decisive factor i n recovery (American P s y c h i a t r i c Association, 1994; Bordo, 1993; Bruch, 1988). S t i l l , funding schemes suggest that t h i s i s where the p r i o r i t y l i e s . Even though informants knew that t h e i r actual weight was not t h e i r main problem, and though a l l suffered great anguish before, during, and a f t e r weigh-ins, a l l f e l t responsible for showing up to be weighed — a measure of t h e i r willingness to comply with p r a c t i t i o n e r s and an obsession with knowing t h e i r actual weight. A debate exists i n the l i t e r a t u r e as to how often one should be weighed during treatment and, indeed whether weighing an i n d i v i d u a l i s detrimental to the progress of AN (Day, 1974; Gabereau, 1994; Garfinkel & Garner, 1982). Touyz, Lennerts, Freeman & Beumont (1990) wrote that weighing three times per week versus once per week had no bearing on the 195 course of treatment. This study only looked at the short-term outcome with respect to weight gain, not at whether the AN behaviors persisted. Also debated i s the practice of weighing an i n d i v i d u a l backwards so that she i s unable to know her weight, the rationale being that she can tr u s t the p r a c t i t i o n e r and be removed from the constant source of stress regarding her weight. The research avai l a b l e on the effectiveness of t h i s point i s minimal. S t i l l , Lawrence (1984) discusses how weighing practices alone a c t u a l l y contribute to the AN behavior rather than counter i t . C l e a r l y , one with AN can be assessed as needing nourishment without being weighed. Although i t could be argued that c a l c u l a t i n g an adequate c a l o r i e intake i s based on the weight of the i n d i v i d u a l , the practice of being weighed causes so much trauma that other more adaptable ways of determining needs should be developed. In addition to the practices of medicating, refeeding and weighing i n d i v i d u a l s , a f i n a l approach used within the medical modality that a f f e c t s the q u a l i t y of care and impedes recovery i s that of i s o l a t i n g individuals during treatment. The informants related the following examples of i s o l a t i o n : being admitted to wards that did not s p e c i a l i z e i n eating-disorders, being discharged from a program when the goal of weight gain was not accomplished, and being subjected to various types of seclusion. 196 Findings demonstrated that being admitted to a s e t t i n g that did not s p e c i a l i z e i n eating disorders -;{such as general p s y c h i a t r i c wards and p r o v i n c i a l psychiatric i n s t i t u t i o n s ) was i n e f f e c t i v e and often detrimental to recovery. There, informants were l e f t to t h e i r own devices and, only received pharmacological and n u t r i t i o n a l treatments. Further, because there were many uns k i l l e d p r a c t i t i o n e r s i n these areas, the informants perceived that they were not understood. They said that they f e l t they were not considered to be ' i l l ' . They perceived that they were simply occupying a bed. Ultimately, the informants f e l t l i t t l e self-worth while i n such settings. The l i t e r a t u r e exploring how i s o l a t i n g features of such settings a f f e c t the q u a l i t y of treatment for AN i s non-existent. However, the l i t e r a t u r e does indicate that a lack of resources exists forcing admissions of indiv i d u a l s into non-specialty areas ( T a r d i f f , 1989). f Informants i n t h i s study were subjected to various types of seclusion which they perceived to be both overtly and covertly manipulated by p r a c t i t i o n e r s and resulted i n feelings of tremendous i s o l a t i o n . According to informants, covert seclusion, i n which the primary goal was to create an incentive to comply with treatment, was achieved by being given l i m i t e d bedroom p r i v i l e g e s , being subjected to bedrest, having v i s i t o r s r e s t r i c t e d , and having r e s t r i c t i o n s placed upon telephone c a l l s . Overt seclusion, i n which the primary 197 goal was to i s o l a t e , was achieved through the use of r e s t r a i n t s . As discussed i n Chapter Four, one informant was restrained for overdosing on 10 a s p i r i n and t o l d t h i s measure was imposed on her to teach her a lesson even while she denied being aggressive or s u i c i d a l . Her motive she had said, was simply to get help. Another informant was restrained i n order to be sedated for l i f e - s a v i n g tube feedings. She claimed to have been highly agitated and i r r i t a b l e . Restraints were employed for these informants i n the place of any c r i s i s intervention, i n t h e i r views because p r a c t i t i o n e r s were short s t a f f e d . Being secluded caused feelings of great i s o l a t i o n i n the informants. Isolating approaches only i n t e n s i f i e d the anxiety and helplessness that informants experienced as a r e s u l t of t h e i r AN. When pra c t i t i o n e r s secluded informants who were already re c l u s i v e and r e t i c e n t i n d i v i d u a l s , informants f e l t they were being punished. None f e l t there were any p o s i t i v e outcomes of seclusion and added that seclusionary t a c t i c s only accentuated the need for control to be regained through an exacerbation of symptoms. While therapeutic effectiveness and moral j u s t i f i c a t i o n of seclusion have been topics of considerable controversy, r a i s i n g issues of sensory deprivation, hallucinations, punishment and convenience, none of the l i t e r a t u r e touches on the s p e c i f i c e f f e c t s on an i n d i v i d u a l who has AN or any type of eating disorder (Brown & 198 Tooke, 1992; Kennedy, Williams & Pesult, 1994). S t i l l , seclusion, both overt and covert, i s a practice used i n the treatment of eating disorders even though the long-term e f f e c t s are unclear. Certainly, such techniques show short-term weight gain; yet once again long-term recovery i s questionable. Informants i n t h i s study claimed to f e e l cumulative feelings of "just getting c r a z i e r ' from such experiences. One wonders how much i s o l a t i v e techniques contributed to those feelings. The medical modality i s not without i t s short-term benefits and these must be acknowledged. However, i n the long-term, medicating, refeeding and weighing practices, and i s o l a t i n g those with AN seem to o f f e r only short-term intervention, leaving individuals with AN s t i l l severely troubled i n the long-term. Whether medical approaches are help f u l to the recovery from AN or whether they simply contribute to a vicious cycle worsening an i n d i v i d u a l ' s condition must be determined. Certainly, women being treated are t e l l i n g us medical modalities are missing the mark, and allowing p r a c t i t i o n e r s to ignore the roots of the matter, the psychosocial problems beneath the physical ones. Exclusionary Aspects of Treatment The implications of medicalizing a social/psychological phenomenon are that c r u c i a l aspects of treatment are excluded. Because great emphasis on medical approaches 199 eclipses attention to other aspects of an i n d i v i d u a l ' s welfare, the q u a l i t y of the treatment experience i s diminished and recovery i s impeded. Three major exclusionary aspects of treatment that are i d e n t i f i e d i n t h i s study r e l a t e to family, peers and environment. Possibly the most neglected aspect of treatment for AN i s the i n c l u s i o n of the family and s i g n i f i c a n t others i n conventional treatments. This i s astounding given the amount of l i t e r a t u r e l i n k i n g family dynamics to the cause of AN (Crisp, 1980; Minuchin, Rosmar & Baker, 1982}'. I spoke to a mother of one informant who f e l t so strongly about t h i s issue that she asked me to research the extent to which families are included i n the treatment for AN. Some l i t e r a t u r e discusses the inc l u s i o n of the family, p a r t i c u l a r l y with reference to p e d i a t r i c and adolescent indiv i d u a l s with AN (Woodside, 1995). However, li m i t e d l i t e r a t u r e exists on the involvement of family when the i n d i v i d u a l i n treatment i s an adult. What i s discussed i n the lay l i t e r a t u r e i s the limited role families are encouraged to play i n the treatment programs of t h e i r loved ones (Ardell & " C A r d e l l , 1985; Dunbar, 1986; Tranquada, 1995). Only two of the informants claimed to have received family therapy as part of t h e i r treatment. These sessions were not formalized, and thus they were sporadic and without focus. Informants revealed that family therapies were never a comprehensive part of 200 t h e i r treatment, nor was marital therapy a part of the conventional treatment, even when families^and/or partners were c l e a r l y thought to be contributing to the AN. Families appear to be excluded both e x p l i c i t l y and i m p l i c i t l y from conventional treatments. E x p l i c i t l y , they were often excluded from treatment i n that v i s i t o r r e s t r i c t i o n s were often imposed on the informant'supposedly to provide incentives to comply. For the same reasons, p r i v i l e g e s such as day passes and telephone c a l l s were denied. In the therapeutic milieu, treatment plans were devised that included only relations between the informant and the p r a c t i t i o n e r s . F i n a l l y , therapy sessions for families were scheduled during daytime hours that were inconvenient to family members. I m p l i c i t l y , family members were constantly excluded from the assessment, planning, intervention and evaluation phases of conventional treatments. They were not given d i r e c t i o n , guidance or suggestions as to how to cope with and/or a i d t h e i r loved one p r i o r , during, and upon termination of treatment. Husbands i n p a r t i c u l a r were viewed as peripheral to treatment according to the informants who were married. As well as being excluded from t h e i r loved one's treatments, family members were also without support or therapy i n connection to l i v i n g with one who has AN. Indeed, according to the l i t e r a t u r e , resources available for such 201 family support are almost non-existent (Kinoy, M i l l e r & Atchley, 1984; Minuchin, Rosmar & Baker, 1982). Tranquada (1995) documents a mother's burden of caring for a daughter with AN: The lowest point came one night i n the f a l l of 1992, when mother and daughter a c t u a l l y discussed the suicide pact. 'We sat down and talked about how our l i v e s had become such h e l l . Her disorder. My i n a b i l i t y to cope. Sheena said, Maybe I should just end i t Mom. And I said, Not without me, honey (p.51). Such desperation i s often the case when families are overburdened with the r e s p o n s i b i l i t y of keeping t h e i r loved one a l i v e . Indeed, as Bachrach notes (1994), families work hard with l i t t l e return at keeping up with the ever changing p o l i c i e s and expectations as t h e i r loved ones are moved from program to program. Families suf f e r along with t h e i r loved one as she batt l e s AN. Often, they experience f r u s t r a t i o n with the complexities of AN, g u i l t i n the b e l i e f they have caused the condition, anger and helplessness at not being able to r e c t i f y the s i t u a t i o n , and t e r r o r at the prospect of t h e i r loved one's death (Garrter & Friedman, 1994; Minuchin, Rosmar & Baker, 1982). Support groups such as ANAD ex i s t i n various parts of the world to reach out to family members (Kinoy, M i l l e r & Atchley, 1984). Findings of a study by Woodside (1995) indicate that many families are not aware of the support groups available to them. Woodside endorses the J 202 growing r o l e of psycho-education for families but concedes that the growth of consumer — acceptable and appropriate education i s slow. Among families who are aware of ANAD and other support groups, some people represent a generation that does not f e e l comfortable attending open for.um discussions. Further, some family members perceive the meetings as 1 inadequate to address the needs of the entire family unit. One informant's ex-husband (the informant denies that the marital breakdown was a re s u l t of the AN) attended ANAD meetings and f e l t he gained insight and understanding into his wife's condition. The informant believes that attending ANAD i n p a r t i c u l a r gave him more patience i n coping with her AN. While family support groups exi s t i n the v i c i n i t i e s of a l l the families of the informants i n t h i s study, none a c t u a l l y attended regular support groups or family therapies a f f i l i a t e d with the centers at which they had received treatment. It i s unclear i n the l i t e r a t u r e whether most or even any i n s t i t u t i o n s o f f e r consistent support groups or family therapies for families as part of the continuing treatment for t h e i r loved ones. Thus, the family appears to be excluded from conventional treatments of AN. What often happens i s that indi v i d u a l s are , treated for t h e i r AN, and then they return to an environment that was i n some or many ways a s i g n i f i c a n t contributing factor to the AN. Informants claimed to learn some adaptation v 203 behaviors related to family dynamics; however, without other family members themselves gaining insight, d i r e c t i o n , or guidance for coping with AN, many informants indicated that they would simply relapse into old patterns within the family structure rather than f i g h t the status quo. One informant's older s i s t e r also had AN, yet her family did not receive family therapy. One wonders i f interventions with the f i r s t daughter would have prevented the second daughter's more severe condition. Without interventions, the family may i n fact have established even deeper patterns of dissension. According to a study by Russell, Szmukler, Dare & E i s l e r (1987), a c l e a r benefit exists for a l l when family therapy i s offered and the c l i e n t i s under 18 and has suffered from AN for less that two years. Addressing the social/psychological components related to the family may indeed be as valuable as addressing the b i o l o g i c a l needs. A second exclusionary aspect of conventional treatment i s related to peer support. The ef f e c t s of peer support i n the treatment of AN i s not well documented i n the l i t e r a t u r e . Informants indicated many benefits and only few l i m i t a t i o n s related to peer support. A f i r s t benefit included e s t a b l i s h i n g friendships. Three of the informants were rec l u s i v e and r e t i c e n t women. As part of t h e i r AN development, they slowly i s o l a t e d themselves from most of t h e i r friends and family members. E s s e n t i a l l y , they were a l l 204 alone u n t i l treatment began, when these informants a l l established friendships with peers with AN. They claimed, then, to e s t a b l i s h and benefit from a large repertoire of s o c i a l a c t i v i t i e s . Another benefit from support from others with AN was the r e a l i z a t i o n that one was not alone or crazy because others were a f f l i c t e d with many of the same challenges. One informant spoke of the motivation that was provided by peers who were making progress i n t h e i r treatment. She f e l t , ' i f she can do i t , then so can I'. Peer support also provided informants with information about who were good p r a c t i t i o n e r s and who were not and which treatments were worthwhile and which should be avoided. F i n a l l y , peer support gave families a chance to get acquainted and i n some cases e s t a b l i s h t h e i r own network and support systems. According to informants, a key l i m i t a t i o n to peer support existed. They described a dichotomy between f e e l i n g motivated when a peer succeeded i n gaining weight and f e e l i n g i n competition with the peer who was thinner yet not making progress. Some informants viewed the thinner, less progressive peer as being better, stronger, more i n control because she could continue to lose weight. Such dichotomies were stronger during i n i t i a l stages of treatment and became less of a problem as recovery became more evident. Thus, peer support was f e l t to be b e n e f i c i a l to informants even though i t could also be problematic. 205 Most informants indicated they were unable to e s t a b l i s h l a s t i n g friendships or continuing peer support while ho s p i t a l i z e d . Informants who spent time within hospital settings were often medicated and thus compromised i n t h e i r a b i l i t y to inte r a c t with peers. Conversely, the informants indicated that they had established l a s t i n g friendships and continuing peer support from day programs and community t r a n s i t i o n houses. In t r a n s i t i o n environments, informants were on fewer medications, and i n t e r a c t i o n amongst peers was encouraged. Perhaps one must be at an advanced stage of recovery to accept and provide peer support, but i t i s l i k e l y that peer support can be b e n e f i c i a l at any time i n an indi v i d u a l ' s recovery. Research to substantiate these claims has not been conducted. Curiously, informants were discouraged from sharing an apartment a f t e r establishing friendships and developing a peer support network. Two informants claimed that p r a c t i t i o n e r s believed that two women with AN who shared an apartment would influence each other i n destructive rather than constructive AN patterns. Informants who desperately wanted to l i v e with a companion were apt to take t h i s advice because they were t e r r i f i e d of s l i p p i n g back into old AN behaviors. Sadly, they ended up l i v i n g on t h e i r own and continuing the AN l i f e s t y l e . There i s no l i t e r a t u r e to support whether people with AN who l i v e together present any 206 danger to one another. Thus, i t seems peer support, whether i n hospital settings, community t r a n s i t i o n homes, day programs or continuing post treatment are not a c t i v e l y or co n s i s t e n t l y advocated by p r a c t i t i o n e r s . No formal d e s c r i p t i v e or empirical research exists to val i d a t e or dispute peer support. Views can only be deduced from the f i v e informants i n t h i s study who valued peer support but were sometimes guarded and sometimes entered into competitive r e l a t i o n s h i p s . One wonders i f the benefits of peer support are being consciously repressed or simply ignored because p r a c t i t i o n e r s are not devising more active plans to use t h i s resource. Again, within the medical modality, i t appears that peer support i s neglected as a form of treatment. A t h i r d exclusionary aspect of treatment i s the diminished emphasis on reality-based treatments as opposed to institution-based treatments. As the noted Canadian Pierre Berton (1987) mused, "we tend to b u i l d up i n s t i t u t i o n s rather than i n d i v i d u a l s " (p. 48). Over and over again i n t h i s study, informants explained that the setting and context of treatment was p i v o t a l i n influencing q u a l i t y of care and recovery. ' Informants often considered hospital-based treatments transient: they were too safe, too controlled, or not comprehensive enough and they didn't consider the environment that the informant must return to when treatment was 207 terminated. The safety of eating-disorder wards was perceived as an environment that was too comfortable and d i f f i c u l t to leave. There, individuals were provided a l l t h e i r meals, were given a structured routine, and were surrounded by p r a c t i t i o n e r s who appeared to be at t h e i r disposal. The extremes of safety there and danger at home presented such a dichotomy for one informant that she did not want to leave the h o s p i t a l . As well as f e e l i n g safe, however, informants who spent time on general p s y c h i a t r i c wards, p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s or medical wards also f e l t very contro l l e d . In such places, they were subjected to r i g i d rules whereby compliance was rewarded and non-compliance wds punished. Such r i g i d i t y often mimicked the very environments that predisposed the women to AN. Upon discharge from these settings, informants experienced an i n t e n s i f i e d need for the r i g i d environment offered by an exacerbation of AN behavior. Although h o s p i t a l i z a t i o n s are validated i n the l i t e r a t u r e as a short-term means of simply refeeding the i n d i v i d u a l so that she i s able to concentrate and be well enough to receive community psychotherapy and be closer to her own environment (Hsu, 1986), longitudinal studies indicate that three week in- h o s p i t a l refeedings do nothing for long-term outcomes of AN behaviors (Freeman & Newton, 1992). Findings from t h i s study indicate that the hospital associated weight gain 208 within an a r t i f i c i a l environment underlies the transient nature of the gain. Community programs and out-patient programs r e f l e c t a more r e a l i s t i c environment. Further, there i s no l i t e r a t u r e to support why refeedings are not conducted i n the community — a r e a l i s t i c s etting — a t a slower rate, with greater support. Such treatment i s attempted at community t r a n s i t i o n homes, though many tread the fine l i n e of molding themselves to the medical modality, thus r i s k i n g r e p e t i t i o n of the same mistakes made i n hospital settings. Medicalizing the treatment of AN neglects the r e a l i s t i c aspects of day-to-day l i v i n g . Many women with AN f i n d themselves i n ' i n s t i t u t i o n a l i z e d ' environments that do not lend themselves to the r e a l i t y of the individual's own world upon discharge. This short sighted thinking may cause i n t e n s i f i e d AN i n the long run. As a r e s u l t of medicalizing what i s l i k e l y a social/psychological phenomenon, many aspects of how the condition might be prevented or managed are overlooked. The re s u l t i s that individuals with AN are treated within a paradigm that inadvertently fosters dependency on the system. Further, the q u a l i t y of the treatment i s diminished and long-term recovery i s lim i t e d because of encountered obstacles such as the gaps i n the system and the people within the system. ( 209 The Concerns of Consumers A l l of the informants i n thi s study are cognizant that most p r a c t i t i o n e r s are tr y i n g to do the best that they cart within a poorly analyzed system. S t i l l , they experience more obstacles to recovery than successes. In addition, consumers and those advocating for better systems to deal with AN share a number of concerns. These include the disregard for in d i v i d u a l i z e d care provided to women with AN and a lack of support for unconventional therapies as a viable option by mainstream p r a c t i t i o n e r s . Research demonstrates that p r a c t i t i o n e r s and consumers of mental health services have very d i f f e r e n t perspectives, challenging the b e l i e f that consumers are unable to define t h e i r own needs r e a l i s t i c a l l y (Goering, Paduchak & Durbin, 1990). A major concern expressed both i n the l i t e r a t u r e and by informants i n thi s study i s the lack of acknowledgment of the contextual aspects of each individual's AN and an absence of treatment which would r e f l e c t such an acknowledgment. When considering the context of an individual's experience of AN, one should include s o c i a l and psychological i n addition to physical aspects. The l i t e r a t u r e advocates obtaining an adequate history/assessment i n order to design an appropriate treatment plan (Woodside, 1995), and t h i s i s always performed upon admission. Yet, informants claimed that once the history/assessment was taken, they received treatment that was generalized for a l l patients with AN. They perceived that t h e i r own unique circumstances were r a r e l y understood and t h e i r i n d i v i d u a l needs r a r e l y met. Further, they f e l t that, often, topics of discussion were related to t h e i r weight and dietary habits rather than"to t h e i r i n d i v i d u a l problems. According to the informants i n t h i s study, among the important aspects to be considered i n making assessments are a history of sexual abuse, a his t o r y of being overweight i n childhood, present age and stage i n l i f e , family genogram and family dynamics, marital or s i g n i f i c a n t -other status, r e l i g i o n and type of AN behaviors. Apparently, for treatments to s t r i k e a balance between maintaining the f l e x i b i l i t y to adapt to i n d i v i d u a l perceptions and the structure that each i n d i v i d u a l needs to f e e l secure, assessments need to be ongoing. Lambley (1983) writes that the most e f f e c t i v e p r a c t i t i o n e r s are those that i n d i v i d u a l i z e care; they do not mold the person into a p a r t i c u l a r framework f a m i l i a r to them, but work within the framework as i t s u i t s the needs of the i n d i v i d u a l . Bachrach (1994) offers by analogy that what i s good for mentally i l l people and what i s good for a p a r t i c u l a r mentally i l l person are two separate issues. Thus, the context i n which each woman develops AN must be e x p l i c i t l y and consistently taken into account during a l l phases of treatment. \ 211 Another concern voiced by consumers and advocates of conventional treatments i s the lack of encouragement for opting for unconventional treatments such as private c l i n i c s , e x p e r i e n t i a l therapies or complimentary therapies. While conventional treatment centers exi s t i n most parts of the country, most of which o f f e r programs that treat AN as a mental i l l n e s s accompanied by a medical condition, unconventional treatments are almost unheard of. Only i n the l a s t ten years has there been a suspicious acceptance of unconventional treatments (Chisholm, 1995). Most people i n the mainstream have had limited exposure to unconventional treatments. Reasons include skepticism of the gatekeepers i n t h e i r use, therefore lack of encouragement for consumers to explore additional avenues, and f i n a n c i a l costs of accessing such services because most are not covered under the Canada Health Act (Chisholm). However, such treatments have begun to reach acceptance i n the mainstream, amidst an economic c r i s i s i n which conditions perceived as more urgent, are funded and preserved. Given these circumstances, the medical modality of conventional health care p e r s i s t s . Conventional eating-disorder centers e x i s t at St Paul's Hospital i n Vancouver, B r i t i s h Columbia as well as at the University of Alberta Hospital i n Edmonton, Alberta, at The Toronto Hospital i n Toronto, Ontario, and at the Douglas Hospital i n Montreal, Quebec to name a few (Canadian College 212 of Health Records Administration, 1987; McCreary Centre Society, 1993; Woodside, 1995). Most treatments for AN within these f a c i l i t i e s are covered under the Canada Health Act thus making them affordable to consumers. Not s u r p r i s i n g l y , the Canadian health care system supports conventional health care treatments. Very l i t t l e i s given to programs that are unconventional, even though these, say informants, could help them to recover much more e f f e c t i v e l y than anything else. In 1990, 38% of the Canadian health care d o l l a r went to the , country's 1240 hospitals; 15% of the d o l l a r went to physicians; 13% covered medications costs; and the r e s t went to c a p i t a l spending and to other health p r a c t i t i o n e r s (Freeman, 1994). Not even 1% of the country's allotment for health care went to research of unconventional methods of treatment. Discussed i n Chapter Two, unconventional treatments include private c l i n i c s such as the Montreux Centre i n V i c t o r i a B.C (Gabereau, 1994) and Sheena's place i n Toronto, Ontario (Tranquada, 1995). Experiential therapies include poetry therapy, dance therapy, art therapy, gestalt therapy and music therapy (Rice, Hardenbergh & Hornyak, 1989). And, complimentary therapies include acupuncture, therapeutic touch, homeopathy, herbal medicine, reflexology and aromatherapy (Chisholm, 1995). According to informants, p r a c t i t i o n e r s never e x p l i c i t l y supported or encouraged 213 private c l i n i c s , e x p e r i e n t i a l or complimentary therapies. Informants f e l t that there was l i t t l e room for overlap of unconventional treatment ideologies with conventional treatments. They maintained that p r a c t i t i o n e r s would not approve of j o i n t l y p a r t i c i p a t i n g i n both spheres of treatment. Pr a c t i t i o n e r s went so far as to make disparaging comments about private c l i n i c s such as the Montreux Centre. Because informants depended on the respect of such p r a c t i t i o n e r s , they did not contradict their* opinions. Some f i n a l l y believed that, i f such treatments were of benefit, then p r a c t i t i o n e r s would long ago have endorsed them. For the most part, informants perceived that many pr a c t i t i o n e r s were unaware of unconventional treatments. Indeed, most informants had themselves only heard of one private c l i n i c , had experienced one experi e n t i a l therapy (art therapy) and had never thought of seeking out a complimentary therapy as part of t h e i r treatment. For those consumers who are aware of alternatives to conventional health care treatments (most are not aware of t h e i r options) there has been a s o c i e t a l resistance to openly embracing unconventional treatments i n the mainstream. Only a decade ago such alter n a t i v e s were viewed as quackery (Chishqlm, 1995). A possible explanation for such resistance i s rooted i n the antiquated b e l i e f s that s c i e n t i f i c , r a t i o n a l thought alone i s valuable to us (Sauvage, 1995). 214 So how can we know whether unconventional treatments r e a l l y have a place i n improving the q u a l i t y of the treatment experience and enhancing recovery of AN? According to consumers, informants and advocates a l i k e , i t i s important to f i n d out (Chisholm, 1995; Lawrence, 1984). However, issues such as accountability, outcome measurement and evaluation seem to be required before a practice can be accepted, funded and can prosper (Chisholm). .Establishing the safety of such practices i s the f i r s t step i n making an argument for t h e i r use. Aside from the controversy that surrounds such practices, most unconventional treatments are not covered under the Canadian Health Act (Chisholm). Most unconventional treatments are thus out of f i n a n c i a l reach for the informants i n t h i s study. Clearly, a bias toward the more expensive and very possibly less e f f e c t i v e conventional treatments i s draining our health care resources. Understanding The Demand For Conventional Treatment So why do individuals continue to depend on the system for conventional treatment? The answer i s that the mere existence of treatment, regardless of i t s type, provides hope to i n d i v i d u a l s . The concept of hope was referred to i n association with treatments of every kind by informants throughout the discussions that we shared. Hope from p r a c t i t i o n e r s communicated a renewed sense of motivation to succeed and respond well to treatments. It seems that hope 215 was not a f e e l i n g that began with the informants: rather, i t was a notion that was introduced externally, primarily from p r a c t i t i o n e r s . Informants described t h e i r interpretation of hope throughout t h i s study. Hope was i n d i r e c t l y related to recovery and cure but never referred to as such. Instead, informants referred to hope for the p o s s i b i l i t y of leading a normal l i f e with a career, partner and children. Informants believed that they may be hopeless cases but as long as p r a c t i t i o n e r s s t i l l believed i n them, then there was some small hope. Informants needed to believe that p r a c t i t i o n e r s were earnestly w i l l i n g to invest themselves i n an informant's recovery. This was more important to them than the unconditional reassurance given to them by family, friends or partners. Hope was primarily conveyed through expert p r a c t i t i o n e r s . An amazing finding i n t h i s study was that almost any type of treatment would be t r i e d or endured i f i t was suggested and administered by an expert p r a c t i t i o n e r . Such t r u s t or b l i n d f a i t h was i n s t i l l e d i n an informant when a expert p r a c t i t i o n e r could genuinely convince the informant that the treatment would help them towards leading a normal l i f e . Informants r e i t e r a t e d the importance of being able to access the system for treatment. That i s , as long as treatment was available to them, there was always hope for 216 them to lead a normal l i f e . Perhaps that i s why being discharged from a treatment program because the goal of weight gain was not obtained was so detrimental to them. In such a circumstance, hope would be ob l i t e r a t e d . An i n t e r e s t i n g finding was that, rather than c r i t i c i z e the treatment, the women i n thi s study blamed themselves when a p a r t i c u l a r treatment was not e f f e c t i v e . In blaming herself rather than the treatment, the informant was able to r a t i o n a l i z e that, with hope provided by pr a c t i t i o n e r s providing the treatments, she could t r y again i n the same treatment and, thus, perhaps accomplish the goals of that treatment a second time around. F i n a l l y , a great deal of confusion and c o n f l i c t sprung forth from the informants who seemed to be open to t r y i n g any type of treatment to help them. While they would not abandon pr a c t i t i o n e r s i n the conventional milieu who they trusted and who had provided hope i n the past, they would be open to treatments that were unconventional i n nature. Findings indicated that hope conjures up both i n s p i r a t i o n a l and detrimental feelings: i n s p i r a t i o n a l , because hope supports optimism, making a normal l i f e seem imminent; detrimental, because a deep, dark vale of misery and d i s i l l u s i o n awaits the ind i v i d u a l who does not ' f i t ' the treatment. Thus, pr a c t i t i o n e r s must come to r e a l i z e the important r o l e that they play i n providing hope to 217 i n d i v i d u a l s with AN and the implications for those indivi d u a l s that do not succeed i n a p a r t i c u l a r treatment a f t e r b e l i e v i n g that they would. Summary With the complicated, convoluted and i n t r i c a t e nature of AN treatment i n our society, i t i s not surp r i s i n g that the recovery for AN i s limited. What comes into c l a r i t y with t h i s study i s a number of obstacles that present themselves to indi v i d u a l s attempting to recover from AN. Gaps i n the system, such as a lack of continuity of services and lacking or l i m i t e d resources contribute to a tumultuous recovery. In addition, the r i g i d i d e o l o g i c a l perspectives maintained by pr a c t i t i o n e r s i n the system tend to involve indiv i d u a l s with AN i n destructive patterns of behavior. F i n a l l y , i n medicalizing a social/psychological phenomenon, by focusing on medicating, refeeding and weighing practices, and secluding individuals with AN, the dominant perspective of treatment i s the medical modality whose focus (and funding) e c l i p s e attention to other important aspects of treatment. S p e c i f i c aspects that are excluded include the family, peers and treatment geared toward coping with the«,informant's r e a l i t y . Situated within t h i s ethos, women with AN continue to access conventional treatments i n the face of «uch adversity, and with the prospect of a slow or no recovery because t h e i r mere a v a i l a b i l i t y provides hope. In the following chapter the implications of these findings for nursing research, pr a c t i c e , education and s o c i a l p o l i c y w i l l be discussed. C 219 CHAPTER SIX: SUMMARY, CONCLUSIONS, IMPLICATIONS Summary This study was undertaken i n order to describe and explore the conventional treatment experiences that women with AN undergo from the perspective of the women themselves. The impetus for the study grew from the l i t e r a t u r e i n d i c a t i n g that there i s a strong consumer c r i t i q u e of various aspects of conventional treatment approaches. Further, conventional treatments have almost e n t i r e l y been guided by ps y c h i a t r i c and psychological c l i n i c a l opinion rather than by research, and many approaches are having limited success rates i n terms of long-term outcome. In addition, more nurses are caring for women with AN i n a l l settings, and yet the nursing care i s orchestrated i n accordance with i n e f f e c t i v e conventional treatment approaches. F i n a l l y , the opinions and perspectives of p r a c t i t i o n e r s i n the health care industry are often d i f f e r e n t from those of the consumers of health care services. Although more pra c t i t i o n e r s are understanding the importance of giving a voice to those consumers, the views of reci p i e n t s of care need to be documented and t h e i r issues f u l l y investigated before we can expect changes toward improved treatment approaches for AN. A review of the l i t e r a t u r e revealed that conventional treatment approaches are generally based on a biopsychosocial perspective that i s predominately made up of medical 220 treatment, psychotherapy and behavioral therapy. Studies evaluating the long-term outcomes of treatments based on these approaches indicate only minimal success. Unconventional treatment approaches such as private c l i n i c s , complimentary therapies and experiential therapies claim to have high success rates. Yet, these claims are inconclusive as they have not yet been empirically tested. As long as they are not covered under the Canada Health Act and remain unaffordable to many consumers, empirical t e s t i n g w i l l not l i k e l y be forthcoming. Support groups and s e l f - h e l p groups for both individuals and families are a welcome addition to treatment when available, but alone they cannot a c t u a l l y represent an individual's entire treatment plan. Nurses play an int e g r a l role i n an indiv i d u a l ' s experience of a conventional treatment approach as they spend more time with an in d i v i d u a l than does anyone from any other health d i s c i p l i n e . Yet, many nursing approaches are orchestrated by the ideologies and treatments devised by other d i s c i p l i n e s . Further, research to evaluate the effectiveness of nursing interventions i s v i r t u a l l y . n o n -existent and governing ideologies go unchecked. A l l aspects of treatment are under scrutiny by consumers for i t i s they who su f f e r the lengthy process of undergoing i n e f f e c t i v e conventional treatments. 221 Findings from t h i s study revealed that there are many obstacles diminishing the q u a l i t y of the treatment experience and l i m i t i n g recovery of those suffering from AN. These include gaps in the system, perspectives and behaviors of p r a c t i t i o n e r s within the system, and the medicalizaton of what perhaps should be considered a social/psychological phenomenon. Gaps i n the system led to a d i s c o n t i n u i t y of services and l i m i t e d resources for treatment. The r e s u l t was that informants had d i f f i c u l t y i n accessing treatments e s p e c i a l l y those that s p e c i a l i z e d i n eating disorders, were community-based, offered c r i s i s intervention and were covered under the Canada Health Care Act. Sustaining treatments that were s i m i l a r across treatment settings also proved to be d i f f i c u l t for informants. Findings also indicated that the q u a l i t y of the treatment experience was contingent upon the setting i n which # i n d i v i d u a l s were treated. Settings for treatment included emergency wards, eating-disorders wards, medical and general p s y c h i a t r i c wards, p r o v i n c i a l psychiatric i n s t i t u t i o n s , and community-based treatment programs. A number of l i m i t a t i o n s existed within each of these settings. Limitations of hospital-based settings included emergency services being il l - e q u i p p e d to handle women with an AN c r i s i s ; medical and general p s y c h i a t r i c wards and p r o v i n c i a l p s y c h i a t r i c 222 i n s t i t u t i o n s lacking p r a c t i t i o n e r s who had expertise i n AN; and eating-disorder wards that maintained a q u a n t i f i a b l e focus rather than one broader, more f l e x i b l e with d i v e r s i f i e d a l t e r n a t i v e s . Overall, a l l settings within the hospital milieu were perceived as a r t i f i c i a l and u n r e a l i s t i c . Limitations of community-based services included programs that terminated before recovery was achieved; programs that were understaffed with mammoth waiting l i s t s ; a lack of emphasis placed on the inc l u s i o n of s i g n i f i c a n t others within the treatments; and a lack of continuity from the hospital to the community. Another obstacle diminishing the q u a l i t y of the treatment experience and l i m i t i n g recovery was the i d e o l o g i c a l perspectives and behaviors of p r a c t i t i o n e r s within the conventional health care system. Practitioners were perceived as r i g i d l y adhering to three i d e o l o g i c a l perspectives that focused on medical, quantifiable and behavioral approaches to treatment. Thus, recovery was judged i n terms of weight gain. The r e s u l t was short-term successes, repeat admissions, and resignation on the part of the informants. P r a c t i t i o n e r s were categorized as expert or orthodox depending on the verbal and nonverbal behaviors that they displayed. Most p r a c t i t i o n e r s providing treatment were orthodox i n that they were either i n d i f f e r e n t or authoritarian i n t h e i r approach to treatment. They tended to 223 exhibit a s p l i t i n i d e o l o g i c a l perspectives and u t i l i z e a dichotomous approach to treatment where informants were exposed to extremes, either being over-controlled or being abandoned. Conversely, expert p r a c t i t i o n e r s were those who had knowledge and c l i n i c a l experience with AN and above a l l else conveyed empathy to informants. Such p r a c t i t i o n e r s were able to provide informants with the hope they needed to imagine a normal l i f e . According to the f i v e informants, another obstacle diminishing the q u a l i t y of the treatment experience and l i m i t i n g recovery was medicalizing what may be a social/psychological phenomenon. This has resulted i n the dependency of informants on a medical modality over one more comprehensive, while excluding c r u c i a l aspects of treatment. Being medicated, refed, weighed and i s o l a t e d a l l resulted i n dependency upon the system. Informants report not learning to cope with t h e i r AN. Because great emphasis on medical approaches eclipsed attention on other aspects of the informants' well- being, family and peers were often l e f t out of the treatment regime. The findings seem to support what consumers and advocates of AN have been saying for years. That i s , conventional * treatments are inadequate. With a l l the negativity surrounding conventional treatments i t i s a wonder that consumers continue to access and support conventional • 224 treatments. Findings showed that the demand for conventional treatments exists because alternatives are li m i t e d i f not unobtainable. S p e c i f i c a l l y , unconventional treatments such as v e x p e r i e n t i a l therapies, complimentary therapies and private c l i n i c s have not been empirically evaluated. As a r e s u l t , they are shrouded i n suspicion and viewed with skepticism. Further, they are generally not covered under the Canada Health Care Act and therefore not affordable to many informants. However, a major reason why consumers continue to access conventional treatments i s that expert p r a c t i t i o n e r s (though few) have r e l e n t l e s s l y invested themselves i n an informant's recovery and t h i s has sustained the hope, f a i t h and confidence that informants have i n conventional treatments. Conclusions * Findings i n t h i s study support the following conclusions: 1. Conventional treatments may not meet the needs of consumers. 2. Many treatments for AN tend to r e f l e c t a medical modality. 3. Conventional treatments include some elements that may be counter-productive to recovery from AN. 4. Conventional treatments may exclude some elements that f a c i l i t a t e recovery for some or a l l i n d i v i d u a l s . 5. The need to e s t a b l i s h recovery within a quantifiable context may be contingent upon the severity of the AN. 225 6. Treatment philosophies may be inconsistent and poorly coordinated within and between settings. 7. Women with A N believe that the behaviors and ideologies p r a c t i t i o n e r s possess are c r i t i c a l to the success of treatment programs. 8. This study r e i t e r a t e s claims made by consumers and advocates of A N that conventional treatments alone are i n e f f e c t i v e . 9. The demand for conventional treatments p e r s i s t s possibly because of the eternal hope these treatments symbolize. 10. The views of recipients for treatment of A N are invaluable i n understanding the implications, of conventional treatments. Implications The ten conclusions gathered from the findings carry s i g n i f i c a n t implications for nursing research, p r a c t i c e , education, and s o c i a l p o l i c y . Nursing Research r There are numerous fundamental areas i n which nursing research i n the treatment of A N must be conducted. F i r s t , q u a l i t a t i v e research studies must be undertaken to enable consumers of care to have a voice. Second, studying the implications of medicalizing what perhaps i s a social/psychological phenomenon i s necessary. Third, est a b l i s h i n g the implications of the settings within which ) 226 treatment takes place must be documented. Fourth, exploring the therapeutic benefits of cert a i n ideologies and behaviors that p r a c t i t i o n e r s possess must be studied. F i n a l l y , the debate concerning the c r i t e r i a for recovery of AN must be resolved. Most research continues to embody only measurable, objective, anecdotal or descriptive data from the researcher's prospective and to exclude the subjects' perspective. Recently, experts have been discovering the value of including the perspective of the subject(s) into research studies. Only when we begin to hear personal anecdotes regarding the experience of treatment for AN w i l l we be able to e f f e c t i v e l y evaluate what f a c i l i t a t e s recovery (revealed by population trends) and why cert a i n approaches do not work. The l i t e r a t u r e on how AN should best be treated reveals a tendency toward medical treatments for AN. Thus, the following implications of medicalizing treatment for AN must be researched: 1) determining the benefit of weighing practices to recovery and whether such practices are counter-productive to treatment i n terms of increased preoccupation with weight gain; 2) examining the worth and consequences of using the threat of being discharged from a program and implementing such a threat as a means to securing compliance of weight gain; 3) ascertaining whether a c e r t a i n amount of 227 weight should be obtained before psychotherapy i s warranted; 4) determining whether cumulative h o s p i t a l i z a t i o n s increase the dependency on pharmacological therapy, tube feedings, and supervised compliance with treatment; 5) exploring the psychological trauma of rapid refeedings and the long-term e f f i c a c y ; 6) exploring whether short-term admissions into hospital settings for rapid refeedings correlate with suicide rates or recidivism rates as Freeman & Newton (1992) speculate; 7) conducting a l i t e r a t u r e review of the benefits of pharmacological therapy for long-term e f f i c a c y ; and 8) determining the long-term e f f i c a c y of i s o l a t i n g i n d i v i d u a l s with AN either covertly or overtly. Determining whether such medicalization eclipses other less conventional treatments which may better contribute to the physical and psychological well-being of the i n d i v i d u a l with AN i s warranted. For example, comparing the long-term e f f i c a c y of using unconventional treatments such as e x p e r i e n t i a l therapies and complimentary therapies to pharmacological therapy, behavioral modification therapy and t r a d i t i o n a l psychotherapies. Given that treatment philosophies may be inconsistent and poorly coordinated within and between settings, evaluation of patient outcomes i s necessary to improve coordination arid consistency among services. Further, as trends i n health care continue towards d e i n s t i t u t i o n a l i z a t i o n , determining the long 228 term e f f i c a c y of d e i n s t i t u t i o n a l i z i n g AN completely and providing treatment i n community-based programs i s necessary. In addition, exploring the long-term e f f i c a c y of being treated i n settings that do not have expert p r a c t i t i o n e r s including medical wards, general p s y c h i a t r i c wards, and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s i s warranted to determine the necessity for expertise i n such settings. Research must be conducted to evaluate the negative or p o s i t i v e influences of those p r a c t i t i o n e r s who are perceived as experts from those p r a c t i t i o n e r s who are not. Also, double-blind controlled studies of long-term outcomes of those Individuals who receive treatment from expert p r a c t i t i o n e r s with those individuals who do not should be conducted. An explanation i s required for the discrepancy i n the nursing l i t e r a t u r e with that found i n t h i s study that orthodox p r a c t i t i o n e r s i n s t i g a t e power struggles while nurses claim that power struggles e x i s t between nurses and patients because of the manipulative personalities of the patients. Further, double-blind controlled studies are needed to measure the e f f i c a c y of empathy versus the lack of empathy i n treatment. Given that s p l i t t i n g behaviors do e x i s t among and between d i s c i p l i n e s , research should be undertaken to determine i f such behaviors mimic the dysfunctional c h a r a c t e r i s t i c s of so c a l l e d anorectic families described i n the l i t e r a t u r e as predisposing factors to AN.N We also need to 2 2 9 e s t a b l i s h the extent to which p r a c t i t i o n e r s treat a patient within the context of t h e i r own needs as opposed to f i t t i n g the patients into t h e i r own frameworks. The etiology of AN remains unknown. Pra c t i t i o n e r s of a l l d i s c i p l i n e s are only able to hypothesize why more women than men are a f f l i c t e d with the condition. Such hypotheses tend to influence the types of treatments. Conducting a secondary analysis s o l i d i f y i n g the study conducted by Keys, Brozek, Henschel, Mickelsen & Taylor,(1950) revealing that physical and psychological symptoms of AN are secondary to AN may contribute to a greater understanding of the social/psychological basis of the phenomenon. Further, determining why more women than men have AN could provide d i r e c t i o n for treatment that focuses on the s p e c i f i c needs of women. Before empirical evaluations of any treatments can begin, establishing c r i t e r i a for recovery must be conclusive i n order to have a basis for establishing e f f e c t i v e and i n e f f e c t i v e treatments. Nursing Practice A r e v i s i t to the nursing l i t e r a t u r e indicates that nurses are cognizant of many of the concerns voiced by informants i n the study. Conversely, the consumer l i t e r a t u r e and findings i n t h i s study show that most nurses treating women with AN do not grasp the implications of nurses r e l y i n g only on conventional approaches to treatment. This study provides 230 nurses with the a b i l i t y to improve the d i r e c t i o n of nursing care by increasing our knowledge about the treatment experience for AN. Further, perhaps findings from t h i s study w i l l encourage nurses to develop and a r t i c u l a t e t h e i r own h o l i s t i c stance toward the treatment of AN. The findings of t h i s study revealed that programs of lim i t e d duration were not e f f e c t i v e e s p e c i a l l y when they focused too much on weight gain. As well, the waiting that resulted from a lack of continuity of services produced anxiety that was counter-productive to treatment. Further, the lack of avenues to seek help i n times of c r i s i s meant that informants either suffered i n silence or accentuated the severity of t h e i r condition, therefore requiring emergency services. For too long nurses have r e l i e d only on conventional approaches to the treatment of AN often without t r u l y understanding the implications for informants. Nurses have been taught to maintain a firm yet supportive a l l i a n c e with a c l i e n t due to the reputation of c l i e n t s being manipulative. They have r e l i e d on the administration of medications rather than relaxation techniques to promote compliance with refeeding r e s u l t i n g i n the i n a b i l i t y of women to learn to eat and cope for themselves. Nurses have added to the obsessions and compulsions of those with AN by obtaining d a i l y weights, counting c a l o r i e s and supervising meals. Further, they have 231 restrained c l i e n t s i n emergency wards and medical wards without exploring the context within which the r e s t r a i n t s were thought to be needed. In addition, nurses have provided treatment to c l i e n t s on generalist wards without f u l f i l l i n g t h e i r professional obligation to keep current and updated regarding eating disorders. They have threatened and discharged c l i e n t s from programs because of i n s u f f i c i e n t weight gain without considering the hopelessness and f u t i l i t y that t h i s brings to informants. Nurses have assumed that a c l i e n t has chronic AN when she cannot be cured by conventional treatments, rather than considering that the s p e c i f i c treatments may not be r i g h t for the i n d i v i d u a l . Moreover, they have neglected to include i n treatment the family, peers and s i g n i f i c a n t others of c l i e n t s . F i n a l l y , nurses have often only paid l i p - s e r v i c e to the concepts of empathy and hope since according to findings they are often unable to t r u l y understand the c l i e n t with AN. Their actions do not r e f l e c t t h e i r empathetic philosophies. It can be argued that nurses are merely carrying out the physician's orders. However, a great deal of the nursing l i t e r a t u r e espouses most of the conventional treatments perceived to be i n e f f e c t i v e by informants. Thus, although some nurse scholars and p r a c t i t i o n e r s have a r t i c u l a t e d the need for a more comprehensive approach to AN, nurses are not a c t u a l l y 232 p r a c t i c i n g or providing the q u a l i t y of interventions espoused by the l i t e r a t u r e . Nurse scholars have written about the contextual aspects of nursing care and described the importance of providing i n d i v i d u a l i z e d care to patients and building a therapeutic a l l i a n c e that includes knowledge of the condition, e f f e c t i v e patient teaching, and establishing a nurse-patient rapport ( L y a l l , 1991; McNamara, 1982; Muscari, 1988). However, informants claimed that t h e i r i n d i v i d u a l needs were often not met and that few p r a c t i t i o n e r s that they encountered provided expert or i n d i v i d u a l i z e d treatment. Nurses must become both knowledgeable about how to provide i n d i v i d u a l i z e d care and experienced at p r a c t i c i n g t h i s way. Contributing factors such as age, past h i s t o r y of sexual abuse, being overweight as a c h i l d , and r e l i g i o u s o r i e n t a t i o n need to be addressed, and areas of s p e c i f i c concern such as the needs of bingers versus the needs of r e s t r i c t o r s must be explained. Those providing psychotherapeutic treatments must also provide adequate documentation, and a decision t r a i l so that others can learn from the most successful of interventions and contribute to continuity for each c l i e n t . Findings suggest that therapeutic nursing interventions ought to include active, e x p l i c i t and consistent guidance, d i r e c t i o n , support, and explanations for family members and s i g n i f i c a n t others within the treatment approach. Moreover, a more active r o l e must be described for s i g n i f i c a n t others of adult c l i e n t s . It appears that families are included i n the treatments of t h e i r children and adolescents, but that husbands, partners, friends and r e l a t i v e s are not t o l d how they might aid i n the treatments of t h e i r loved ones who are adults. Further, nursing interventions must be extended to those involved with the AN sufferer i n the forms of therapy, support groups and education. Nurses i n practice must begin to e x p l i c i t l y include the family, s i g n i f i c a n t others and friends within the treatment regime i n \order to provide h o l i s t i c care. In addition, the value of peer support must be e x p l i c i t l y studied and then endorsed i f i t i s found to have merit. Nurses must also work to foster an appropriate l e v e l of empathy. F i n a l l y , they must maintain competency i n t h e i r practice and promote and f a c i l i t a t e the autonomy of t h e i r c l i e n t s . Nurses caring for women with AN must be s e n s i t i v e to the importance of establishing and maintaining a c o l l e g i a l work environment. His or her behavior towards colleagues, other d i s c i p l i n e s and e s p e c i a l l y c l i e n t s i s ascribed meaning by indivi d u a l s with AN. A l l levels of nursing must devise a comprehensive, consistent plan of care that i s endorsed by a l l other lev e l s of the m u l t i d i s c i p l i n a r y team. Nurses cannot function as a cohesive unit i f there are d i v i s i o n s amongst 234 d i s c i p l i n e s . Findings indicate that p r a c t i t i o n e r s undermine each other's approaches r e s u l t i n g i n counter-productive care. Nurses i n the hospital and the community must work j o i n t l y to ensure that consistency and continuity i s achieved across environments. Ultimately, better coordination and consistency within and between d i s c i p l i n e s , programs and settings w i l l allow each member of the health care team to o f f e r a woman with AN i n d i v i d u a l i z e d care that i s aimed at recovery, not just weight gain and basic s u r v i v a l . Leadership i n a l l areas of nursing ought to challenge e x i s t i n g programs and demand s o c i e t a l responses. In order for the goals of appropriate and e f f e c t i v e care to be accomplished, the s p e c i f i c nursing leadership concerns should include hospital-based and community-based i n i t i a t i v e s . Hospital-based i n i t i a t i v e s include the f e a s i b i l i t y of increasing nurse-to-patient s t a f f i n g r a t i o s so that nurses can spend q u a l i t y time with c l i e n t s and assess for and provide therapeutic interventions. Findings of t h i s study and others are that hospital nurses are too busy, to spend q u a l i t y time with patients who have AN and that nurses i n the community settings alone offered uninterrupted and e f f e c t i v e attention to i n d i v i d u a l problems although they are understaffed. In addition, the extensions of the length and duration of a l l treatment programs must be reviewed. A system to ensure the continuity of services i s needed so that 235 counter-productive waiting periods are avoided. For the present time, i t i s inevitable that women with AN w i l l continue to be admitted to 'generalist' wards. Nurses i n medical wards, general ps y c h i a t r i c wards, and p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s are often not knowledgeable about the treatment of eating-disorders i n these areas and as a r e s u l t the q u a l i t y of care i s often impeded. Such nurses must be offered ongoing inservice education programs about the importance of conveying earnest, genuine and empathetic behaviors to patients with AN. Further, they must receive regular inservices that heighten t h e i r knowledge base about AN. F i n a l l y , only those nurses who are receptive to caring for individuals with AN on such generalist wards should be, assigned to them as more harm can be done i f orthodox or nurses lacking i n knowledge, experience and empathy are assigned to individuals with AN. Community-based i n i t i a t i v e s for improved e f f i c a c y of treatments include increasing the a v a i l a b i l i t y of support groups for s i g n i f i c a n t others as well as implementing c r i s i s intervention services as part of a l l treatment centers. Further, l i t t l e i s written about formalized awareness campaigns for school children, adolescents or adults (Chitty, 1991). While school programs exist which are designed to prevent AN, they are rare and inadequate. It appears that less than 10% of a l l school children receive indepth 236 education about eating disorders and the prevention of them. Thus, more resources with enhanced coordination amongst d i s c i p l i n e s and settings having greater v a r i e t y of treatment avail a b l e to individuals i s required. P r a c t i t i o n e r s should be receptive to exploring new avenues of treatments such as private c l i n i c s , e x p e r i e n t i a l therapies and complimentary therapies as an adjunct to conventional treatments. An interest must be taken i n evaluating them and determining which can be applied i n more conventional settings. Nurses must fi n d a lternatives to pharmacological therapies as a means of aiding c l i e n t s i n coping with AN. Perhaps nursing interests i n such modalities as therapeutic touch can be encouraged through leadership v i s - a - v i s exploring and developing h o l i s t i c programs of AN. Attitudes receptive to unconventional treatments being proposed and offered w i l l only p r e v a i l with the support of leaders who are committed to exploring and t e s t i n g such avenues at a l l levels within organizations. Walsh (1995) i n s i s t s , "we need to make [AN] a public health issue so people are aware of the treatment. We also need to invest the resources i n studying these eating disorders, which continue to plague the l i v e s of too many people" (p. 8). But such statements are sadly only that — statements. Nurse must take a more active role i n providing health promotion and prevention programs to a l l sectors of > r 237 society. Thus, p r a c t i t i o n e r s and leaders a l i k e w i l l only become cognizant of the need for individuals with AN to receive new or revised alternatives when they appreciate problems associated with the more common conventional a l t e r n a t i v e s . Nursing Education If a dramatic change i n treatment for AN i s to become a r e a l i t y , i t must include nursing education at the forefront. The profession must begin to teach prospective nurses to be open to d i f f e r e n t approaches to interventions depending on the needs of consumers. Professors must focus on designing c u r r i c u l a that include threads of hope and empathy throughout, as well as s p e c i f i c content on these topics. Generally, nursing education i s r i f e with examples of the importance of empathy (Benner, 1984; Bevis & Watson, 1989); scholars write about how important i t i s to model empathy as a professor (Diekelemann, 1990). Yet, these concepts are often not e x p l i c i t l y and i m p l i c i t l y taught within the curriculum. Nor are they often practiced, understood or evaluated — by teachers toward students, between nurses and c l i e n t s , and between students and c l i e n t s . It i s no longer enough to pay l i p - s e r v i c e to these concepts or simply r o l e model them. Nurse educators ought to teach students to understand the implications of exploring the concepts of hope and empathy. Nurses must describe, explore and analyze the concepts of hope and empathy i n order to gain an 1 understanding of what these concepts mean, what meaning they have to the woman with AN and what meaning i s ascribed to them by s i g n i f i c a n t others. It i s not enough to simply provide content on the importance of the incl u s i o n of the family and s i g n i f i c a n t others. Such areas ought to be included as threads i n the curriculum so that prospective nurses are able to view the patient within the context of her world and design care based on t h i s view. Given that few nurses as yet have the knowledge and s k i l l s necessary to provide care for f a m i l i e s - a s - c l i e n t s , t h i s requires on-going basic and continuing education and supervised prac t i c e . Likewise, health prevention and promotion f o c i must be included as threads so that prospective nurses are able to provide such care to family, friends and s i g n i f i c a n t others while providing t e r t i a r y care to the i n d i v i d u a l with AN. Further, complimentary and e x p e r i e n t i a l therapies should be part of the nursing content i n order to increase the number of interventions at a nurse's disposal. No discrete nursing models exi s t for AN*. A l l are associated with or dependent on conventional treatment approaches. For new models to e x i s t , new theories must be developed, perhaps a process which could be fostered at a graduate l e v e l . In 1988, Geary petitioned for a h o l i s t i c 239 nursing model to caring for c l i e n t s with AN. Today, there i s s t i l l no discrete model for practice. Nursing education ought to f a c i l i t a t e and support students f i r s t to determine e x p l i c i t l y the value and function of nursing's r o l e i n the treatment of AN and then to undertake theory design, implementation and evaluation toward improving the q u a l i t y of nursing interventions and enhancing recovery. F i n a l l y , nursing education must focus on the importance of becoming active within nursing associations and at a l l l e v e l s of government. Only there w i l l we obtain enough lobbying power to support changes and gain public support for AN programs. Again, i t i s not enough to simply teach such content; students must get acquainted with the process of lobbying through p a r t i c i p a t i o n . Nurses must learn how to access and increase resources i n the system and discover where they w i l l be best used toward long-term recovery. S o c i a l P o l i c y * Huge expenditures i n conventional health care treatments have prompted economists to state that additional expenditures would not necessarily r e s u l t i n improved health status but only additional expenditures (Decter, 1994). A lack of coordination among general ps y c h i a t r i c wards, p r o v i n c i a l p s y c h i a t r i c i n s t i t u t i o n s and community mental health programs has emerged as a major impediment to service planning and delivery i n Canada (Wasylenki, Goering & 240 Macnaughton, 199.4). This i s c e r t a i n l y r e f l e c t e d i n the findings of t h i s study. The incidence of AN continues to climb despite present treatments. Unless treatments change and produce more e f f e c t i v e r e s u l t s , additional expenses w i l l indeed be wasted. Rather than expanding present conventional trends, add i t i o n a l resources should be sought for newer more appropriate treatments. Funding for research must be found to enable those i n power to separate the treatments that are cost-e f f e c t i v e but geared toward only short-term gains from those that are c o s t - e f f e c t i v e and geared toward long-term recovery. Areas needing close examination for t h e i r relevance to q u a l i t y of care and effectiveness of recovery include medical treatments, treatments at private c l i n i c s , complimentary therapies, and experiential therapies. Only when t h i s i s done can experts, consumers, and leaders make informed decisions about what should be available, what should be funded, and what should be covered under the Canada Health Act; only then can preventative, t e r t i a r y , and chronic care programs expect public support and government funding. There i s no sense i n opening up more beds i n a medical ward or t r a i n i n g more experts under a medical modality when medical measures do not work. Instead the p r i o r i t y must be to fund studies which demonstrate what does work i n a c o s t - e f f e c t i v e manner. The emphasis on the design and implementation of prevention programs must be considered i n a l l areas of pra c t i c e . Although many pra c t i t i o n e r s acknowledge the s o c i o c u l t u r a l factors predisposing women to AN, they do l i t t l e to discover what might be done at t h i s same l e v e l to reduce the prevalence of the condition (Freeman & Newton, 1992; Woodside, 1995). It i s d i f f i c u l t to cope with, heal and prevent AN i n a society that values thinness. S t i l l , l i t t l e has been done to i n i t i a t e a s o c i e t a l campaign to end AN. Unlike the awareness enjoyed by campaigns for cancer prevention and safe sex, issues regarding AN haye yet to gain public attention. More and more a r t i c l e s are beginning to appear i n magazines creating an awareness of AN but they are slow i n coming (Brody, 1995). Their prevalence cannot compare to mainstream preventative programs l i k e those for stopping smoking. Campaigns to stop AN do not exist; there are no ribbons representing those who have suffered and died from AN. Yet, the number of f a t a l i t i e s from th i s condition grows each year. ^Findings indicate that none of the informants knew what AN was u n t i l they had full-blown AN and were diagnosed by t h e i r general p r a c t i t i o n e r s . None could remember receiving any type of preventative program i n primary or secondary school. A l l believed that i f programs had existed e a r l i e r i n t h e i r l i v e s , they might have prevented t h e i r AN or at le a s t encouraged them to obtain help at an e a r l i e r stage of t h e i r condition. 242 . Thus, the ind i v i d u a l with AN, who has been exposed to the numerous treatments available may experience so much discouragement regarding her recovery that recovery w i l l be beyond her expectations. Only with a health care system dedicated to her recovery w i l l she support that dedication by her own e f f o r t s . A Final Thought The Canadian i d e n t i t y i s strongly linked>to Canada's health care system and the notion of a "universal entitlement" to medical attention (Bachrach, 1994, p. 4). With so much of our concern on the costs of such entitlement, the s u i t a b i l i t y of various types of medical approaches based on an exploration of t h e i r benefits should come into question with regard to the treatment of AN. Long-term gains can be made toward recovery from AN with increased research, heightened public awareness and administrative support. Thus, hope for those who have AN can be renewed. The intent of t h i s study then, was to describe the conventional treatment experience that women with AN undergo. The basis for t h i s study included extensive consumer l i t e r a t u r e and scholarly l i t e r a t u r e that indicated that the present treatments were not working. The purpose of the study was to gain a greater understanding of the treatment experience for AN i n order to improve the nursing care that women receive. 243 Findings from the study revealed that for too long nurses have r e l i e d on conventional treatments for AN without t r u l y understanding the implications of such treatments. Women with AN are searching for expert p r a c t i t i o n e r s i n ef f e c t u a l treatment settings. Nurses can be those expert p r a c t i t i o n e r s . Their unique role i s caring — and more s p e c i f i c a l l y caring for the whole person. Nurses are also i n the unique po s i t i o n to l i s t e n to women with AN and understand the f r u s t r a t i o n , sense of f u t i l i t y and hopelessness that conventional treatments foster within these women. 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The use of metaphor and poetry therapy i n the treatment of the r e t i c e n t subgroup of anorectic patients. In L. Hornyak & E. Baker (Eds.), Ex p e r i e n t i a l therapies for eating disorders (pp. 191-205). New York: Guilford Press. Woods, P., & Catanzaro, M. (1988). Nursing research. Theory . and pract i c e . St Louis: Mosby. Woodside, D.B. (1995). A review of anorexia nervosa and bulimia nervosa. Current Problems i n P e d i a t r i c s , 25, 67-89. 267 APPENDIX A: DSM IV CRITERIA: 307.1 ANOREXIA NERVOSA A. Refusal to maintain body weight over a minimal normal weight for age and height, e.g., weight loss leading to maintenance of body weight less than 85% of that expected; or f a i l u r e to make expected weight gain during period of growth, leading to body weight less than 85% of that expected. B. Intense fear of gaining weight or becoming f a t , even though underweight. C. Disturbance i n the way i n which one's body shape i s experienced; undue influence of body weight or shape on self- e v a l u a t i o n , or denial of the seriousness of the current low body weight. D. In post-menarchal females, amenorrhea, i . e . , the absence of at least three consecutive menstrual cycles. (A woman i s considered to have amenorrhea i f her periods occur only following hormone, e.g., estrogen administration.) Specify type: R e s t r i c t i n g type: During episode of Anorexia nervosa, the person does not regularly engage i n binge eating or purging behavior ( i . e . , self-induced vomiting or the misuse of laxatives or d i u r e t i c s ) Binge Eating/Purging type: During the episode of Anorexia Nervosa, the person regularly engages i n binge eating or purging behavior ( i . e . , self-induced vomiting or the misuse of laxatives or d i u r e t i c s ) 268 APPENDIX B: OVER-EATERS ANONYMOUS (12 STEPS) 1. Admitted we were powerless over food-that our l i v e s had become unmanageable. 2. Came to believe that a power greater than ourselves could restore us to sanity. 3. Made a decision to turn our w i l l and our l i v e s over to the care of God as we understood him. 4. Made a searching and fearless moral inventory of ourselves. 5. Admitted to God, to ourselves, and to another human being the exact nature of our wrongs. 6. Were e n t i r e l y ready to have God remove a l l the defects of character. 7. Humbly asked Him to remove our shortcomings. 8. Made a l i s t of a l l persons we had harmed and became w i l l i n g to make amends to them a l l . 9. Made d i r e c t amends to such people wherever possible, except when to do so would injure them or others. 10. Continued to take personal inventory and, when we were wrong, promptly admitted i t . 11. Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His w i l l for us and the power to carry that out. 12. Having had a s p i r i t u a l awakening as the r e s u l t of these steps, we t r i e d to carry t h i s message to compulsive overeaters and to practice these p r i n c i p l e s i n a l l our a f f a i r s . APPENDIX C: INFORMANT INFORMATION LETTER 269 A p r i l 25 , 1995 Dear Informant: My name i s xxxxx xxxx. I am a Registered Nurse who i s enrolled i n the Graduate Program, Department of Nursing at the University of B r i t i s h Columbia. My Master's thesis i s a study of how women describe t h e i r treatment experience for Anorexia Nervosa. I became interested i n t h i s topic when I discovered that a good fri e n d of mine had Anorexia Nervosa. I had many long conversations with her and gained new insight and understanding into the experiences that she had while treated for Anorexia Nervosa. My c u r i o s i t y was heightened when I discussed with several nurses t h e i r opinions and b e l i e f s i n caring for women with Anorexia Nervosa. They expressed sadness and regret for not e n t i r e l y understanding the experiences of women who are treated for Anorexia Nervosa. This lead me to the idea of learning from women with Anorexia Nervosa about t h e i r treatment experiences f i r s t hand. It i s my hope that t h i s knowledge w i l l a s s i s t nurses to provide improved nursing care for women who are treated for Anorexia Nervosa. This l e t t e r i s to ask i f you are w i l l i n g to p a r t i c i p a t e i n t h i s study. I would l i k e to tal k with approximately 5 women who presently have or have had Anorexia Nervosa, have been treated for Anorexia Nervosa at least once, and who are not ho s p i t a l i z e d at the present time. Your involvement i n th i s study w i l l include meeting me i n your home or a se t t i n g which i s convenient to you. Our conversation w i l l l a s t approximately one hour. In addition, you w i l l be asked to supply me with your telephone number so that I may contact you and possibly meet with you again i n order to v e r i f y my interpretations of our conversation. With your permission, our conversation w i l l be tape-recorded, but you w i l l have the rig h t at any point to request that the tape be turned o f f or that a portion of the tape be erased. 1 of 2 2 7 0 C o n f i d e n t i a l i t y w i l l be maintained by coding your name so that your i d e n t i t y i s known only to myself. Your name and any other i d e n t i f y i n g information w i l l not be used i n the study or i n any future publications of the findings. The tape recordings and t r a n s c r i p t s w i l l be destroyed upon completion of the study. You are not obliged to p a r t i c i p a t e i n t h i s study. Refusal to do so w i l l not jeopardize any care, treatment or therapy that you may presently be receiving. S i m i l a r l y , you may refuse to answer any questions during our conversation or withdraw from the study at any time. You can give only information that you wish me to know, or choose not to give any information at any time. There w i l l be a $20.00 honorarium to show my appreciation, which you w i l l receive before our tape-recorded conversation begins. If you are interested i n p a r t i c i p a t i n g i n t h i s study, or would l i k e more information p r i o r to making your decision, please f e e l free to c a l l me at 000-0000. My supervisor i s xxxxx xxxxxx R.N., Ph.D. She can be reached at the School of Nursing, University of B r i t i s h Columbia, xxx-xxxx. Sincerely, xxxxx xxxx R.N. , B.S.N. Graduate Student University of B r i t i s h Columbia 2 of 2 APPENDIX D: INFORMANT CONSENT FORM 271 How Do Women Describe The Conventional Treatment Experience for Anorexia Nervosa: A Thematic Descriptive Study. THIS IS TO CERTIFY THAT I, (print name) am giving my consent to meet and tal k with xxxxx xxxx, a graduate nursing student at the University of B r i t i s h Columbia. I understand that she i s interested i n studying my treatment experience for Anorexia Nervosa. I am aware that t h i s study may provide increased understanding and awareness to nurses who care for women with Anorexia Nervosa. I understand that agreeing to pa r t i c i p a t e i n t h i s study involves meeting and ta l k i n g with Janet Ernes about my treatment experience for Anorexia Nervosa. I understand that our conversation w i l l be tape-recorded i n a se t t i n g which i s convenient for me. The tape-recorded conversation w i l l l a s t approximately one hour i n duration. The conversation w i l l be transcribed into written form. I understand that at the completion of the study, the tapes w i l l be destroyed and that my name w i l l not be associated with any published or unpublished material. My i d e n t i t y w i l l be known only to xxxxx xxxx because she w i l l numerically code the information that I provide when she transcribes the tape-recording. I understand and agree that my involvement w i l l require submitting my telephone number to xxxxx xxxx and possibly meeting with her at a future date i n order to valid a t e her interpretations of the conversation that we have. I am informed and understand that I am under no obl i g a t i o n to pa r t i c i p a t e i n t h i s study and that I am free to withdraw from the study at any time. I am informed and understand that I may refuse to answer any questions, remain s i l e n t , or leave the conversation at any time, and refuse any telephone c a l l s or future meetings. I understand that r e f u s a l to p a r t i c i p a t e i n t h i s study w i l l not jeopardize any care, treatment or therapy that I may presently be receiving. 1 of 2 272 I understand that potential benefits d i r e c t l y to myself are li m i t e d to contributing nursing knowledge and to communicating my experience of being treated for Anorexia Nervosa. I understand that there are no r i s k s involved i n partaking i n t h i s study. I have been informed that I w i l l receive a $20.00 honorarium before the tape-recorded interview begins i n appreciation for p a r t i c i p a t i n g i n the study. I understand that the results of t h i s study w i l l be made avai l a b l e to me i f I request them from xxxxx xxxx. I am informed that xxxxx xxxx i s the person to contact i f I have any questions 1 or concerns regarding my involvement i n t h i s study, xxxxx xxxx can be reached at 000-0000. xxxxx xxxx' supervisor to contact i s xxxxx xxxxxx R.N., Ph.D. at the School of Nursing, University of B r i t i s h Columbia at 000-0000. I, the undersigned, understand the nature of xxxxx xxxx' study. I give my written consent to p a r t i c i p a t e as an informant i n her study. I acknowledge receiving a copy of the consent form. Date . My Name My Telephone Number My Signature , Date.... Researcher Signature, 2 of 2 APPENDIX E: INTERVIEW GUIDE 273 1. Could you please describe what l i f e was l i k e for you with Anorexia Nervosa before treatment? 2. Could you please describe the setting i n which you received treatment? 3. I'm interested i n what i t i s l i k e to receive treatment for Anorexia Nervosa. Please describe what i t i s l i k e for you to have been treated for Anorexia Nervosa? 4. Could you describe what sort of treatments you received? 5. How did you f e e l about the treatment(s)? How i s t h i s interview going for you so far? 6. Did you f e e l that you were involved i n the decision making of the treatment(s)? If yes, how? If no, why not? 7. Could you please describe your response to the treatment experience? r 8. What sort of interactions did you have with the various nurses In the se t t i n g i n which you received treatment? 9. Could you please describe what l i f e was l i k e for you with Anorexia Nervosa a f t e r treatment? 10. How do you think your experience with the treatment has affected you i n general? 11. What aspect of your treatment experience would you have l i k e d to change? 12. What aspects of the nursing care would you have l i k e d to change? 13. What aspects of the nursing care did you f i n d helpful? 14. What suggestions, i f any, do you have for nurses or others who work with women who have Anorexia Nervosa? 15. What race, r e l i g i o n , type of Anorexia Nervosa ( r e s t r i c t o r or binger/purger), educational l e v e l , sexual o r i e n t a t i o n and type of employment do you have? 

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