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Eating Disorders, 10:61–71, 2002 Copyright © 2002 Brunner-Routledge 1064-0266/02 $12.00 + .00 The authors thank the Psychiatric Research Center for the Counties Finnmark and Tromsø, for their kind financial support to this study. Address correspondence to Gunn Pettersen, University Hospital of Tromsø, N-9291, Tromsø, Norway. E-mail: gunn.pettersen@rito.no Improvement and Recovery from Eating Disorders: A Patient Perspective GUNN PETTERSEN and JAN H. ROSENVINGE University Hospital of Tromsø, Tromsø, Norway University of Tromsø, Tromsø, Norway This study presents a patient perspective on improvement and re- covery from eating disorders. Forty-eight women recruited from patient organizations and a university eating disorder unit participated in the study. Participants completed standard question- naires and a qualitative interview. “A wish to change,” professional treatment, nonprofessional care, and important persons in the women’s lives were identified as important recovery factors. Recov- ery included improved acceptance of oneself, interpersonal relations, problem solving, and body satisfaction, which was not entirely dependent on symptom absence. The patient perspective concurred with clinical reasoning about recovery. What does it mean to recover from an eating disorder? Clinical judgement is influenced by a given treatment approach, as well as implicit aetiological assumptions. This leads to a stress on a diversity of factors like behavioural symptoms, emotions, cognitive dysfunctions, conflicts related to identity, self- esteem, autonomy, and relation to family members. One problem with clinical judgments is a fundamental attribution error which gives credit to the treatment for improvement and attribute treatment failure to patient resistance, manipulation, or ambivalence. This may derail into treatment conservatism, an underscoring of patient resources, and the failure to consider factors other than therapy in the recovery process. An- other problem is the implicit assumptions of normality and the failure to take into consideration the statistical variance in the population with respect to eating habits, body experience, self-esteem, or personal control. Also, nor- mative assumptions of health may bring about unrealistical ideals with re- 62 G. Pettersen and J. H. Rosenvinge spect to symptom absence and certain ways of organizing life. Some re- search instruments used to define recovery refer to rather well-defined, but narrow criteria like symptom reduction, menstrual regularity, and the attain- ment of normal weight, others to more cognitive and emotional aspects (e.g. Garner, Olmsted, Bohr, & Garfinkel, 1982; Garner, Olmsted, & Polivy, 1983; Rosenvinge et al., 2001) or to more broadly defined aspects of life (e.g., Morgan & Hayward, 1988; Morgan & Russell, 1975). However, using formal instruments may conceal these problems. In psychometric terms this refers to poor standardization and the lack of normative data, as well as a lack of a theoretical framework (Engelsen & Hagtvedt, 1999). It might be the case then, that when recovery from an eating disorder is defined only by clinicians and researchers, important aspects of recovery might be overlooked. For instance, defining the treatment goal as symptom reduction, patients may not necessarily experience a concurrent increase in their quality of life. Furthermore, patient satisfaction with treatment does not always concur with therapist’s preferences in selecting treatment modalities like, for instance, family therapy (Rosenvinge & Klusmeier, 2000) where a change of family interaction is a criterion for recovery. Moreover, sufferers themselves may show a more realistic perception of the interactional style in their families than clinicians (Waller, Slade, & Calam, 1990). A patient per- spective may also reveal important recovery factors not derived from theory, treatment manuals or from the mind of the clinicians (Beresin, Gordon, & Herzog, 1989; Hsu, Crisp, & Callendes, 1992; Rorty, Yager, & Rossotto, 1993; Rosenvinge & Klusmeier, 2000). For instance, Hsu et al. (1992) found that patients stressed personal strength, self-confidence, being ready for change, and being understood as factors important for recovery, and not variables explicitly related to treatment. Such rather personalized descriptions may be attributed to more general concepts related to an action stage of change (Treasure, Katzman, & Scmidt, 1999) as well as an internal health locus of control. Hence, investigating patient opinions about their own recovery might broaden the perspective on which kind of effect and recovery variables should be candidates for further research to develop more formal criteria. A problem in some previous studies that have included the patient per- spective is the use of small number of participants and the exclusive use of qualitative methods. This might reduce the variation of information and re- strict the ability to make at least some generalizations. The limitations of instruments aside, by combining qualitative and quantitative methods one may circumvent this problem. Moreover, like clinical judgment, patient ex- periences may be biased, and the use of instruments may explain variables of the patient experiences as well as make it possible to compare subjective experiences and clinical reasoning about recovery. The aim of the present paper is to describe (1) factors that are identified by sufferers of eating disorders as contributing to their recovery, (2) how sufferers define recovery from eating disorders, and (3) to relate the subjec- Improvement and Recovery: Patient Perspective 63 tive experiences with measures of eating disorder symptom load, personal health control, and a clinical consensus-based list of items potentially rel- evant to recovery from eating disorders. METHOD Participants Forty-eight women, selected from patient organizations on eating disorders and from the eating disorder unit at the University Hospital of Tromsø, partici- pated in the study. Participants were included according to the following criteria; (1) a minimum age of 18 years on entering the study, (2) a duration of eating disorders of at least three years, and (3) that they had received professional treatment for eating disorders. We used a strategic, rather than a random, selection procedure as our intention was to describe the subjective experience of recovery. Hence, participants were included who had given their recovery processes some personal considerations. There were no drop- outs. The study was approved by the local medical ethics committee, and participants who provided informed consent were paid $20 for their participation. Data Collection A qualitative, open interview was used, with two main questions framing the interview (1) What factors have been helpful to you in the recovery process? and (2) What is the meaning of recovery for you? Each interview lasted from 1–3 hours and was audiotaped and subsequently transcribed for further analy- sis. In addition, the participants completed the Health Locus of Control Scale (Levenson, 1973), the Eating Disorder Examination-Short form (EDE-S) (Beglin & Fairburn, 1992), and the Eating Disturbance Scale (EDS-5) (Rosenvinge et al., 2001). The Health Locus of Control scale consists of two subscales (internal and external locus of control) each ranging from 1–36, where the higher scores indicate a high level of perceived internal versus external sources of health. The Cronbach’s alpha for the internal and external subscale were 0.60 and 0.66, respectively. The EDE-S provides an indication of a clinical eating disorder, particularly bulimia nervosa, while the EDS-5 (Cronbach’s alpha = 0.91) was included in order to measure the level of generally disturbed eating patterns, ranging from 1 to 32 (most disturbed eating patterns). The participants also completed 11 fixed recovery items developed by Gresko and Rosenvinge (1998) and included in the recent Norwegian treatment guidelines for eating disorders (Norwegian Directorate of Health, 2000). Each item was scored using a Like
rt scale where 1 indicated full disagreement and 7 indicated full agreement. To compare with the self-report, the interviewees also completed this list of items. These items formed two fairly coherent 64 G. Pettersen and J. H. Rosenvinge measures (Cronbach’s alpha = 0.75 and 0.73, respectively). Apart from these measures, normative data have been developed for the other instruments used in this study. Data Analysis of Qualitative Information Using the transcribed interview texts, an initial analysis was made to identify all statements containing information about improvement and recovery. As- pects that overlapped or applied to very few participants were eliminated. The 48 interviews were then coded according to a detailed categorical system, developed by consensus of the authors, and based on previous re- search (i.e., Garrett, 1997; Reigstad & Holte, 1995; Rorty et al., 1993). To check for reliability, a researcher blind to the data categorisations was given a random selection of 20 uncoded interview texts. The blind researcher clas- sified main aspects contributing to recovery in each interview. Comparing the original and the blind classification gave an agreement rate of 85%. The remaining interview classifications were resolved by discussions. RESULTS Overall Results The mean age of the participants was 27.6 years (SD 4.9, range 20–38 years). Forty-six participants (96%) were students or in a stable job, while two participants were living on sick-pension. Twenty-four participants (50%) were single, while twenty-five had a partner. Nine participants (19%) had children. On average, the participants had eating disorders for 11.1 years (SD 5.0; range 4–23 years). When interviewed, the mean weight was 61.5 kg (SD 17.1; range 40–130 kg). Ten subjects (21%) reported current or a previous history of anorexia nervosa and 10 of bulimia nervosa. The remaining had a binge eating disorder or a mixture of anorexia nervosa and bulimia nervosa (n = 8 and n = 20, respectively). Their perceived own contribution to health was higher (mean Internal Locus of Control score = 21.6; SD = 3.4; range 14– 30) than the expectance of external determinants (mean External Locus of Control subscale = 7.9; SD = 4.4; range 1–19; t = 43,73, df = 47, p < 000). The mean EDS-5 score was 18.2 (SD 7.61, range 5–33) which was above the cut point of 16 indicating disturbed eating (Rosenvinge et al., 2001). Also, the EDE-S items revealed that current bulimic overeating occurred among 57% (n = 27), while 33% (n =16) reported vomiting. Sixty-two percent (n = 29) reported a preoccupation with food and calories that disturbed their concentration with daily life activities, and 19% (n = 9) reported guilt feeling about weight or appearance during more than half of their regular meals and also reported a strong desire to become thinner. On the other hand, from a maxi- mum score of 7, the mean level of self-reported improvement was 5.2 (SD = Improvement and Recovery: Patient Perspective 65 0.81), which was highly correlated (r = .96, p < .000) with the clinical evalu- ation (M = 5.2; SD = 0.79). Table 1 displays the means and correlations for the individual items, indicating that the participants were true sufferers from eating disorders who also had experienced recovery. Factors Contributing to Recovery The qualitative interviews made it possible to classify the 48 interviews into one general recovery aspect. Forty-seven interviews were classified into three independent aspects, indicating issues that dominated thinking about factors contributing to recovery. A General Aspect of Recovery: The Desire for a Better Life All participants reported that admitting their eating disorder was the first step in a recovery process that took many years. A statement like “I developed anorexia when I was 13, but I didn’t admit it until I was 18,” was typical. Prior to this were feelings of not being ill enough, shame and guilt over symptoms, and firmly believing that they were the only one having such problems, that they would be able to manage on their own, or that they did not deserve help. Direct treatment resistance was not reported. The overriding motives to recover were to prevent the eating disorder from dominating life, to evade negative medical, social, or professional con- sequences of eating disorders, or because they were “fed-up” with having an eating disorder. Participants who experienced periods of severe eating disor- der symptoms also referred to such periods as a crisis and a turning point TABLE 1. The Presence of Fixed Recovery Factors (1 = Fully Disagree, 7 = Fully Agree) and the Correlation Between Self-Report and Clinical Evaluation at the Time of the Interview Clinical Self-report evaluation Recovery factors M (SD) M (SD) r p Normal weight 5.2 (1.85) 6.1 (1.77) .36 .01 No health-threatening dieting 4.0 (2.15) 4.2 (2.25) .86 .000 Regular menstruation 6.5 (1.54) 6.5 (1.58) .99 .000 Positive experience of body and appearance 4.2 (1.60) 4.1 (1.72) .89 .000 Quality of life improving with reduced symptom frequency 6.2 (1.15) 6.2 (1.13) .94 .000 Understand why eating disorder developed 5.5 (1.26) 5.4 (1.11) .75 .000 Recognize factors eliciting eating disorder symptoms 5.8 (1.21) 5.7 (1.10) .79 .000 Contact with own feelings and being able to communicate them to others 4.9 (1.19) 4.7 (1.23) .73 .000 Able to resume previous activities or initiate new ones 5.7 (1.12) 5.6 (1.19) .84 .000 No symptom exacerbation in case of stress or negative life events 3.6 (1.88) 3.3 (1.87) .88 .000 No negative perfectionism 5.5 (1.32) 5.2 (1.85) .73 .000 66 G. Pettersen and J. H. Rosenvinge that initiated the recovery process. Experiences often mentioned were: “it was a question between life and death” and “I came to a point where life had no meaning, and then realized that I needed help.” All women sooner or later looked for help from others. Aspect 1: Effects of Professional Treatment (58%; n = 27) Treatment effects were related to a feeling of “being ready” and “motivated to change.” Some participants could have terminated treatment because of a strongly negative treatment experience, and were seeing the same therapist some years later when ready to give up symptoms. At the later treatment approach, however, the treatment evaluation was positive. Hence, a positive treatment experience was related to timing and being in an action stage to change. Judging therapy as positive was strongly associated with experiencing a therapeutic relationship which emphasized support, empathy, respect, un- derstanding, and seeing the individual “behind the symptoms.” “I got the feeling that the therapist really cared about me, I trusted her and I didn’t need to cover up” was a typical description. Good therapists also were de- scribed as those who were engaged, had time to listen, and were available. Specific knowledge about eating disorders was not judged as a matter of vital importance. Moreover, a focus on eating disorder symptom control was not mentioned in particular. Rather, a better understanding of their own situation and help to deal with issues underlying the eating disorders were highly valued results of therapy. A typical statement was “The therapist asked questions that opened my mind and made me capable to change my way of thinking.” Other benefits included antidepressant medication. This was ex- perienced as a buffer to strong emotions, a help to overcome a crisis, and a regulator of food and hunger. Factors related to relapse prevention were help to follow a diet plan, as well as clinical follow-ups. Aspect 2: Effects of Nonprofessional Care (17%; n = 8) Nonprofessional care included meeting other sufferers, and participating in activities like self-help groups, Internet chat groups, meetings, and courses, as well as reading self-helps books. This promoted a feeling of being able to recognize oneself in others. A statements like “I didn’t need to explain everything, they understood” reflected that through sharing experiences with other sufferers they got a deeper knowledge and understanding of their eating disorder than what a th
erapist could provide. They also met with other sufferers who had many positive personal resources, and this helped them to realize their own potentials. Moreover, meeting women who were recovered provided hope with respect to their own recovery, as did communication with other sufferers with more severe symptoms than themselves. This un- Improvement and Recovery: Patient Perspective 67 derstanding was helpful in stimulating the wish to change and to seek professional help. Aspect 3: Effects of Positive Life Events and Important Persons (25%; n = 12) This aspect involved the emotional and practical support provided by close friends, a partner, or parents. Such important individuals were often the first to know about their problems, the first to encourage them to seek profes- sional help, and the main source of trust, acceptance, and practical and emotional support. This contribution was vital to increase participants’ self- esteem. However, many participants valued a distance from parents as even more helpful in order to recover. Positve life events included continuing, education, getting a stable job, or having a partner or children. In particular, those (n = 9) who had a child experienced the care and responsibility as a turning point in the recovery process, or the last “drop” that was necessary for motivation to recover and to view life as meaningful (e.g., “When I got pregnant I knew that my eating disorder was a thing of the past.”) Also, for participants who did not have children, the thought of one day having children was an important motivating factor to recover. Subjective Experience Versus Measures of Eating Disorders and Health Locus of Control A multivariate analysis of variance (ANOVA) using age, present weight, and duration of illness as covariates showed no significant differences between the three independent aspect groups on the Eating Disturbance Scale (EDS- 5), the 11 fixed recovery factor scores from self-report, and from clinical TABLE 2. Means and SDs of Target Variables for Three Independent Subgroups Describing Main Helping Agents like Professional Treatment (aspect 1); Nonprofessionals and/or Patient Organizations (aspect 2), and Other Important Individuals or Positive Life Events (aspect 3) Aspect 1 Aspect 2 Aspect 3 (N = 27) (N = 8) (N = 12) M (SD) M (SD) M (SD) Age 27.4 (4.61) 27.1 (4.42) 28.8 (5.77) Duration of illness (years) 10.9 (4.85) 11.5 (5.16) 11.6 (5.43) Present weight (kg) 60.3 (15.83) 71.4 (28.23) 56.4 (4.11) Sum EDS-5 17.6 (6.36) 21.0 (8.85) 16.3 (8.48) Internal locus of control 21.7 (3.22) 23.3 (4.06) 20.6 (2.97) External locus of control 7.7 (4.46) 7.4 (5.50) 7.8 (3.24) Fixed recovery factors Clinical evaluation 5.2 (0.68) 5.1 (1.10) 5.5 (0.78) Patient self-evaluation 5.1 (0.73) 5.1 (1.19) 5.4 (0.72) 68 G. Pettersen and J. H. Rosenvinge evaluation, or on the internal and external health locus of control. Table 2 provides the descriptive data with respect to aspect means. What Does It Mean to Recover? The experiences of 45 participants (excluding three participants with few ideas about the question) were classified into seven aspects (percentages add up to more than 100 due to multiple responses): 1. to accept myself and my body (76%) 2. not to use food to resolve problems and not to let food dominate life (76%) 3. to feel that life has a purpose to oneself and to others (38%) 4. to have contact with emotions and the courage to express them (33%) 5. to have less anxiety and depression (29%) 6. to fulfil own potential and not just to conform to expectations from others (20%) 7. to have a good social functioning (13%) Accepting oneself included feeling comfortable with other people in general, and being able to function sexually and emotionally in a relation- ship with a stable partner. This feeling was closely linked to body acceptance. Functional eating behaviours were less related to symptom frequency, and more to the feeling of food not dominating life and thinking, as well as being able to enjoy meals without feeling guilty. Recovery also implied not using binges to resolve problems related to negative life events, emotional distress, expectations from others, or unduly high personal expectations. Hence, learning how to cope with stress and negative life events clearly was related to being in contact with one’s own emotions and having the courage to express them. Given the long duration of illness (i.e., 11 years), eating disorders had been a dominant aspect of life, and the participants generally stated that eating disorders would always be a part of their life history. Hence, they had to be aware of possible relapse factors, and be careful about their relation- ship to food. Some participants thought that they always would have some restrictions towards food intake. Thus, a total absence of thoughts about food, body, and weight would appear as rather meaningless as a single criterion of recovery. Moreover, participants also experienced life as rather difficult without their eating disorder. A typical statement was: “I can’t run away any longer, I have to deal with many difficult situations and emotions that I previously could control with my food intake, and that can sometimes be hard.” Participants defined themselves as recovered despite the presence of symptoms of eating disorders, anxiety, and depression. Hence, recovery was not an end point, but rather an ongoing process, and a graded subjective experience. Improvement and Recovery: Patient Perspective 69 DISCUSSION The exploratory hypothesis for this investigation was that a focus on the patient perspective could expand our knowledge and understanding of the recovery process and the factors assisting recovery. In accordance with Rorty et al. (1993), empathic and caring relation- ships with others whether therapists, other women with eating disorders, or important persons were essential to recovery. First, this stands in contrast to some clinicians’ viewpoints that stress the need for specific competence on eating disorders, and use the lack of such competence as an excuse for not treating patients with eating disorders. Second, this may point to important healing processes outside the frame of professional treatment, and hence, the need to maintain a social network and the support from family members to promote recovery and life satisfaction (Diener & Fujita, 1995). Another finding was the importance of timing to reach an action stage of change, that is, a combination of a patient who has internalised the true dangers and consequences of eating disorders, and a genuinely interested clinician. Then, the clinical heuristic of the “earlier-the-better” with respect to starting treat- ment may be a genuine fallacy, and not to abide to such a clinical heuristic may, in fact, increase patient satisfaction with treatment (Rosenvinge & Klusmeier, 2000). Another clinical heuristic is that patients with eating disor- ders are reluctant to change or give up their eating disorder symptoms. At least for patients with some years of suffering, this heuristic may not be true, as the wish to improve the quality of life was mentioned by all the partici- pants in this study. Similar findings have been reported in the literature (Hsu et al., 1992; Rorty et al., 1993). This is consistent with the high scores on the internal locus of control scale, indicating a high level of personal control and responsibility for one’s own health. If such internal locus of control is a consistent pattern over time, this could, however, be more destructive when eating disorders are developing. In fact, many participants gave themselves the responsibility for developing and maintaining eating disorders. At the time of the investigation, the internal health locus of control was high irrespective of whether improvement was initiated by therapists, non- professionals, or positive life events. This might indicate these aspects as necessary, though not sufficient, to recover. Also, a personal experience of recovery and a rather healthy internal locus of control experience were present despite the fact that the EDE-S and the EDS-5 showed the prese
nce of clear cut eating disorder symptoms and disturbed eating patterns. This may indicate that patients can experience recovery and control over their own health, despite the eating disorders symptoms. Thus, symptom reduction may not stand out as a goal per se, but rather as a means to accomplish more functional interpersonal relations, thinking, and problem solving strategies. Hence, a patient opinion does not introduce a different perspective than what is advocated by clinicians or in controlled treatment studies (e.g., Fairburn et al., 1995). Nevertheless, clini- 70 G. Pettersen and J. H. Rosenvinge cians may be guarded against underscoring the importance of body acceptance in evaluating recovery. The seven factors of recovery summarizing the patient perspective con- cur with the 11 fixed recovery items used in this study (Table 1), and no participant reported items being irrelevant. These items may be a starting point to future research. Following the introducing arguments such research includes collecting normative data from the general population to control for the statistical variance and the fallacy of “supernormalism” in measuring recovery. Such a fallacy in itself may exacerbate negative perfectionism as unrealistic personal standards. REFERENCES Beglin, S., & Fairburn, C. G. (1992). Evaluation of a new instrument for the detection of eating disorders in community samples. Psychiatry Research, 44, 191–201. Beresin, E. V., Gordon, C., & Herzog, D. B. (1989). The process of recovering from anorexia nervosa. Journal of the American Psychoanalytic Association, 17, 101– 130. Diener, E., & Fujita, J. (1995). Resources, personal strivings and subjective well- being: A nomothetic and idiographic approach. Journal of Personality and So- cial Psychology, 51, 1058–1068. Engelsen, B. K., & Hagtvedt, K. A. (1999). A generalizability study of the Eating Attitudes Test (EAT-12) in non-clinical adolescents. 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