RESEARCH ARTICLE

Severe and Enduring Anorexia Nervosa (SEED-AN): A Qualitative Study of Patients with 20+ Years of Anorexia Nervosa† Paul H. Robinson1,2*, Roza Kukucska1, Giulia Guidetti1 & Gerard Leavey2,3 1

Barnet Enfield and Haringey Mental Health Trust, UK University College London, UK 3 Ulster University, UK 2

Abstract Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (using Thematic Analysis) of patients with severe and enduring anorexia nervosa (SEED-AN) in which we undertook recorded interviews in eight participants whose conditions had lasted 20–40 years. We found 15 principle features in physical, psychological, social, family, occupational and treatment realms. Psychological and social realms were most affected. Severe physical problems were reported. They described feelings of unworthiness, frugality regarding money and obsessive time-keeping. Persisting with negligible social networks, participants described depression and hopelessness, while somehow achieving a sense of pride at their endurance and survival in spite of the eating disorder. They emphasized the importance of professional help in managing their care. The severe and enduring description, often reserved for people with psychotic illness, is appropriately applied to SEED-AN, which has major impacts in all realms. Copyright © 2015 John Wiley & Sons, Ltd and Eating Disorders Association. Received 27 October 2014; Revised 28 January 2015; Accepted 5 March 2015 Keywords qualitative; anorexia; SEED; severe and enduring anorexia nervosa; chronic *Correspondence Dr Paul Robinson, Research Department, Block H, St Ann’s Hospital, St Ann’s Road, N15 3TH, London. Tel/Fax: 02084426503; Mobile phone: 07752419035 Email: [email protected] † Work carried out at St Ann's Hospital Eating Disorders Service. Published online in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/erv.2367

Introduction Anorexia nervosa (AN) is a serious psychiatric disorder. For young women, the point prevalence is about 0.45%, and the typical age of onset is during adolescence (Smink, van Hoeken, & Hoek, 2012) The prognosis varies, but around one in seven are ill for 10 years or more (Steinhausen, 2002). Prolonged AN presents problems which are comparable with those of other serious mental disorders such as schizophrenia and affective disorder (Arkell & Robinson, 2008), and this led to the identification of a subgroup of patients with AN who can be regarded as having a severe and enduring form of the illness, much as a proportion of patients with schizophrenia are regarded as having severe and enduring mental illness (Department of Health, UK Government, 1999). In order not to exclude patients with other eating disorders from the severe and enduring category, we use the term SEED, severe and enduring eating disorder, followed by the appropriate suffix, that is, SEED-AN and SEED-BN. For severe and enduring anorexia nervosa (SEED-AN) (Robinson, 2009, 2014), there is no consensus on how severe or long lasting the condition should be to merit that term. Bamford and Mountford (2012) suggest the following criteria for ‘Longstanding Anorexia Nervosa’: (1) consistently ill for 10 years or more; (2) experience of at least one recognized 318

therapeutic treatment; (3) severity of impairment across a number of life domains; and (4) demonstrate low motivation for recovery. They cite evidence by Strober et al. (Strober, Freeman, & Morrell, 1997) and Von Holle et al. (2008) that after 10 years AN becomes significantly more difficult to treat. Hay, Touyz, and Sud (2012) in their review chose a minimum of 3 years, and Touyz et al. (2013) in their treatment study, chose at least 7 years. However, in a Delphi study of professionals (Tierney & Fox, 2009), no consensus on duration of illness for the definition of SEED was reached, and Bamford and Sly (2010) in a quantitative study found that duration of illness did not predict quality of life in AN. Nevertheless, few studies have investigated the psychological and social consequences of living with AN for a long time (Arkell & Robinson, 2008). In order to better understand SEED, we interviewed individual men and women with AN of long duration and undoubted severity, systematically detailing symptoms, behaviours and experiences.

Methods Recruitment Clinicians at St Ann’s Hospital Eating Disorders Service were circulated with a request for referrals of patients meeting the study

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criteria. Suitable patients referred were provided a Participant Information sheet and, at least 24 h later, an initial meeting with one of the research team. All participants provided informed written consent. Inclusion criteria were: (1) over 18 years of age; (2) a continuous history of AN, meeting Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria (American Psychiatric Association, 2013) for at least the previous 20 years apart from temporary normalization of body mass index (BMI) as inpatients; and (3) competency in English. We excluded people who were considered too ill to participate and lacked the capacity to consent to the research. The choice of 20 years as the minimum duration of illness was made so as to include participants with a very long illness, permitting an examination of the extremes of both symptomatology and adaptation to the disorder. Interviews We used multiple in-depth recorded interviews with patients from the existing outpatient and inpatient population at a large North London Eating Disorders Service. Two of the authors (R. K., G. G.) interviewed the participants with the help of a topic guide which covered the following areas: physical, psychological, social, family of origin, food, occupation and treatment. Questions were kept deliberately open, providing cues for participants with a minimal interruption by the interviewer. Prompts were used when questions needed further exploration, so that new areas could be generated. Each participant was interviewed between four and six times with sessions lasting approximately 50 min. We found that 1 h was the maximum that participants were able to tolerate in one session and, because of the quantity of information that they wished to impart, several sessions were required. At each interview, we did not feedback our views on information that had emerged in previous interviews. For each patient, the interviews were undertaken by the same interviewer who then transcribed them. Analysis We analysed the interviews using thematic analysis (Charmaz, 2006; Thomas & Harden, 2008) in which the transcripts were coded (open codes) by the first author who identified and highlighted those statements that referred to significant experiences. Each open code was allocated to a selective code. The principle selective codes followed the topics in the interview guide. For each participant, the open codes were grouped according to the selective codes, and a memo was written about that area. The tentative codes and themes derived from this process were discussed and then agreed by at least two of the authors. A third author settled any dissonance about the constructs or coding. The theoretical ideas were developed through an iterative process of constant comparison in which successive interviews were informed by previous ones. Thus, we identified and further explored some areas more extensively as their theoretical significance emerged. We have characterized this as a preliminary study because saturation did not occur and further studies are required in order to complete a comprehensive study. Approval for the study was obtained from the South East Research Ethics Committee.

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Results Patient characteristics In this section, we provide a brief description of each patient. All names have been changed. Claire (outpatient) is in her 50s and has suffered from AN continuously for 33 years. She has been living on her own for 15 years in a three-bedroom house that she inherited from her parents. She has no siblings and is rarely in contact with relatives. She had several inpatient admissions and is now an outpatient seeing a consultant psychiatrist, a dietitian, a psychologist and at times a nurse. Her current BMI is 16. She has not had paid work for 20 years, but does voluntary work for the church. John (inpatient) is in his 40s and has had AN continuously for 20 years. He lives on his own, has had a number of short-term jobs but is currently receiving state benefits. He was first admitted to hospital at age 21 years and is currently receiving the latest of many inpatient admissions. He has anaemia and low white cells; he has lost all his teeth, and his BMI is 13. He has a big family, rarely sees them but does speak on the phone. He has no close friends, and he has never been in an intimate relationship. Ann (day patient) has lived with AN for 23 years, developing bulimia 19 years ago. She has had no inpatient treatment but has received outpatient and day treatment. She is single, lives alone in a bedsit and has a history of self-harm, drinking, anxiety, obsessive–compulsive disorder and hoarding. She has had the occasional menstrual period, but has still developed osteoporosis, and she has severe dental problems. Her current BMI is 17.8. She worked full time for a few years, but now works only 1 day per week and volunteers in a mental health charity. She gets on well with her family and meets them regularly and has had several intimate relationships. Mary (outpatient) is almost 60 years of age and has had AN for 40 years. She lives in her own house with her younger son. She has three children and is divorced. She has two brothers, and she is in frequent contact with her parents. She has been diagnosed with osteoporosis, Reynaud’s syndrome and Grave’s disease, and her BMI is 17. She has a history of self-harm and gastric scarring due to overdoses. She has been treated as an inpatient but is currently seen as an outpatient and has private psychotherapy. She runs her own business and is in higher education. She has no close friends. Barbara (inpatient) has had AN for 40 years. She has had many admissions, and she is currently an inpatient, her BMI having increased during her admission to 18.5. She has a one-bedroom flat rented privately. She has three siblings, and she is in touch with one of her brothers. Both parents have died. She has osteoporosis and suffers from frequent episodes of hypokalaemia with two cardiac arrests. She studied nursing but did not finish the course and had a few brief periods of work in the past. She has no close friends and has not had an intimate relationship. Beth (day patient) is 53 years old and has had AN for 30 years. Although she owns a one-bedroom flat, she has been living with her elderly mother for 25 years as her carer, but the relationship is fraught. She has been an outpatient and day patient for 20 years. She has osteoporosis, Reynaud’s syndrome, high blood pressure, high cholesterol, low sodium and dental problems. Her BMI is

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14. She also has anxiety and takes an antidepressant. She has not been at work for the last 28 years. Beth has nine siblings and gets on with some. Peter (inpatient) is 50 years old, having had AN for 35 years. He has been living on his own in a council flat for 7 years. He worked as a ship broker but now helps out voluntarily in day centres for homeless people. He has had several inpatient admissions, and his current BMI is 13.7. He suffers from memory loss, poor attention, osteoporosis and has had pneumonia. In his family, he has four siblings, his mother and stepfather and has a regular contact and good relationship with them. He has had a few short-lived intimate relationships. Liz (outpatient) is 56 years old and has had AN for 40 years. She is currently restricting and occasionally makes herself sick. Her BMI is 15.6. She had admissions at 16 and 30 years of age. She was a local Council Administrator but has been unemployed for 8 years. She had a daughter aged 15 years with her ex-partner and has been in another supportive relationship for the past 9 years. They live together in a two-bedroom house. She receives sickness and child benefits. The mean age of the participants in this series was 50 years, and they had a mean duration of illness of 32.1 years. Thus, this group represents the extreme of enduring AN. Most (N = 5) had restricting AN with a mean BMI of 15.7. Five were current inpatients or day patients. Main Themes In the following section, we provide a description of various life and health domains.

I just do walking. I don’t do too much because if you do too much exercise, it compensates your weight so I make sure that I do just about enough. (Peter) Barbara said that although she sometimes worried about physical problems she has had (fits and cardiac arrests) the concerns quickly evaporate: I sometimes think to myself you’ve got to stop this and turn things around but then this is only for a momentary time but as soon as that moment passes you forget. You don’t deliberately forget but it’s like your mind automatically shuts it out so it doesn’t exist. So you can just make out that it’s not happening. Psychological Eating disorders (ED) present many psychological difficulties (Le Grange et al., 2014). The following psychological traits and symptoms were noted throughout the interviews: (1) unworthiness, (2) clinical frugality, (3) time-keeping and (4) depression. Unworthiness and self-loathing was almost universal among our participants; a belief that they did not deserve anything that would normally be deemed as wholesome or nourishing. This resulted in a masochistic approach to food and other possessions, and a tendency to choose items considered as trash. I don’t feel that I do as much as other people I don’t need to eat as much as other people and I can’t have the treats that other people have. (Claire) …Anything that passed the date in the fridge I wouldn’t give to anybody else but I would have it for me. I used to have this attitude like rubbish for rubbish. (Beth)

Physical Physical problems are legion in AN, and the death rate is the highest of any psychiatric disorder (Arcelus, Mitchell, Wales, & Nielsen, 2011) Patients in the first few years of AN may become so ill that they have to be admitted to medical wards, where the combination of physical and mental disorder may defeat the efforts of the staff, resulting in the patient’s death (Royal College of Psychiatrists, 2014b) Moreover, in the patient group with the longest duration of illness, mortality increases over time (Franko et al., 2013) Among our participants, however, the impact of physical problems tended to be minimized, the current and potential damage is qualified and usually in relation to available medical support. In this way, there is a sense of brinkmanship being acted out and a belief that they will not stray beyond bodily or medical limits.

Clinical frugality Although most were living on state benefits, an extreme unwillingness to spend money was noted among our participants, a behaviour which was strongly linked to unworthiness. Resonant of a self-denying hermitic existence, participants would save money, not spend on themselves but on other people and give to charity.

The worst thing is going to be as I am moving in my latter years being osteoporotic but you know what, there are some fantastic tablets today. (Mary).

I find it very difficult spending money. If you walked into my flat, I’ve got nothing particular there … just very-very bare. My shoes, I wear them until they begin to fall into pieces. (John)

Osteoporosis was diagnosed but I think it’s controllable … with Calcium and the right diet, and I think it’s not acute. (Peter)

John was pleased to see the level of his savings increase in the bank, but as soon as it reached a certain amount, he could not bear it, and he gave it to charity.

Again, with this kind of rational calculation, participants tend to carefully calibrate their behaviour in order to prevent physical deterioration. The statements reveal something of their profound control over their existence and may suggest something of a survival strategy. 320

I felt like I was a horrible, disgusting, person … I felt like really ugly and disgusting and dirty and therefore to dress myself in things that made me look pretty would be like, it would be wrong somehow. (Ann)

Time concerns Many of the issues raised by our participants were associated with time. Thus, they were perpetually calculating time, feeling they were wasting time, that they had too much time, needed to fill

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time and that time was passing. Again, this appears to be an aspect of self-control and a constant calculation about life and resources.

cope with, this (eating disorder) is the situation that I know best how to cope with. (Peter)

Sometimes I wonder because it (eating) just fills time. If I eat a sandwich in 5 minutes I would be thinking what now? What would I do with the rest of my day? (John)

… it felt good to feel very tired, it felt good to push myself, it felt good that I could walk extremely long distances without eating, without drinking without needing anything, that I could push myself to that extreme. It made me feel veryvery strong that I could do that …. (John)

And you feel all frustrated because you just spend about three hours in the supermarket looking at labels … and not having done anything. (Beth) Additionally, these aspects of mental state may be associated with a practical reality (too much time on their hands) and in part to a constant sense of unworthiness and guilt about not achieving minimal goals. Depression and other mental symptoms Depression, hopelessness and suicidal thoughts were commonly mentioned. For example, John welcomed the idea of death through anorexia, as it bore less stigma for the family than suicide, and Liz woke each morning wishing she had not. There was considerable obsessionality noted within their narratives. In particular, several participants used exercise, generally walking, to reduce weight or fill time, assuage guilt and justify eating. These activities, exercising and eating, were reported as being constantly monitored and measured, in a self-analysis of cost-benefit. I tried to work everything else around it so I could still have some walks. One time … my father came to pick me up as I was walking back from work, I felt really-really-reallyreally angry. He came to pick me up and I couldn’t walk home and he really couldn’t understand why I was so angry. But I just wanted to walk and he can’t pick me up because the rage that rose up inside me was incredible …. (John) Body image was a significant factor. Barbara weighed herself and measuring different parts of her body several times a day and ate an amount that depended on the results. Positive experiences related to the eating disorder While participants commonly expressed the feeling that ED had robbed them of a normal life, of the possibility of a career or a family, some communicated a more benign perspective, in which the disorder was a source of achievement and pride. In other words, the ED appeared to provide meaning and structure to their lives. The sense of purpose attributed by some may contribute to the resilience that all our participants manifested, surviving with so debilitating an illness for so long. Several felt that there would be an intolerable void without it; the source of the pride was in one’s endurance, meeting the demands of the illness. For others, it was a pride in achieving in the world of work in spite of it. Moreover, of considerable importance, our participants appear to define themselves by the disorder. I wouldn’t be the same person if I hadn’t had it. I wouldn’t be me. (Ann) All it means is more control in what I know best and in case there is a problem or a situation, which is not too easy to

Social Social isolation was ubiquitous. The preoccupation with eating and weight and the fear of peer pressure to eat, forced participants into an avoidance of social situations in which food was likely to be present. Avoidance strategies are constantly evoked, usually fabricating other engagements. Thus, normal social intercourse is denied, and in consequence, friendships have deteriorated and disappeared. While it was acknowledged that dining together was symbolic, a way of expressing affection, developing relationships and sometimes intimacy, these could never be realized in the midst of the disorder. If somebody says to me would you like to go to the cinema or a friend or something and not thinking and they said we’ll go for a meal first, I tend to panic and then I’m looking at my diary knowing that I had nothing there but I would say that I can’t make it. (Barbara) I felt I just totally failed and dropped out of life. I was too scared to join up the squash club, I was too scared to socialise with people, I lost all my confidence with job interviews. (John) Intimate relationships were rare: Eating really destroyed relationship I’ve been in the past. It’s probably the main reason why relationships haven’t worked out. And of course one of the first things to do with somebody is going for a meal. (Ann) With relationships I have regrets because of not being able to have children… my sister said that it’s so sad, I know that Beth would have been a perfect mother. (Beth) I’ve got no one to be with special, nothing special to do and it’s just horrible. (Claire) The narratives reveal a hermitic lifestyle with loneliness and particularly the lack of an intimate partner, a common and painful theme. It is likely to be associated with depression. As one participant noted: I just wish that my social life was a bit more than it actually is and maybe I wouldn’t feel so low in mood I suppose. When I go home at the weekends, most weekends I’m on my own, if I don’t go to my brother and I don’t always want to do that. (Barbara) Participants attended events on their own, or would simply walk around shops, looking but never buying. Only one patient had a current partner, a man with ongoing mental health problems. In two cases, (John and Claire) churchgoing was an

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important activity. It was tempered by the belief that God would not approve of their eating behaviour. John would take steps to avoid getting into a conversation with any of the congregants, for example, by leaving services early, in case they criticized him. The reasons for the isolation are likely to be complex. Certainly some ED behaviours, especially food restriction, are not conducive to social events which generally involve meals. Some participants felt that as their main interests were food, body image and exercise, and their experiences were related to treatment, they had nothing interesting to say. They avoided people who might pressure them to eat and found the problems associated with choosing from menus impossible to solve, preferring to stay at home. Poor confidence in social groups is another inhibiting factor. The severity of body image problems coupled with low levels of libido in intimate encounters, are likely to ruin the development of sexual relationships. These complex areas need to be further explored using focused qualitative and quantitative studies, so that therapeutic interventions can be designed to help address them. Family Relationships with family varied greatly in both between participants and within participants over time. Some found their families highly supportive and available. Others had gone through a long period during which the family seemed to be bewildered and highly critical, only to soften in recent years and for at least some of the family to become more accepting: In the last two years the relationship with my family has got better. I now have contact with my sister. We often chat on the phone. I don’t really see my brothers or hear from them, I often ask my parents about them, they ask about me. (John) Some participants had become carers of their own parents, after siblings left home: I was sort of left; a lot of the family got married and moved away from home. (Beth) There was regret and grief over not having had a family, and nieces and nephews were seen as very significant: And that really my nephews and nieces have stopped me giving up on myself, the thought of what they would feel if anything happened to me. (Beth) We conclude that the degree to which the family appear to support the patient with SEED-AN varies, and that help for the family in dealing with the challenges of having a relative with an ED (Treasure, Smith, & Crane, 2007) may well be appropriate. Food The relationship with food and eating was reported in various ways. Food acted as a comfort, a way of self-punishing, as an impediment to social contact and as an interest which could be an obsession. Sometimes bingeing was seen as a desired evening activity which replaced social contact. Participants would spend a great deal of time thinking about food and weight sometimes becoming quite absorbed in meticulous calculation: 322

When I was looking around other things, I found … myself thinking I’m having such and such today, but I could replace that with so and so knowing that I wouldn’t do it. But I would still be thinking it. Usually for a lower calorie food, how many grams do I have to have to make it equal to that? So I was going to buy couscous, then I would take my calculator out and I work it out how much of that I need to be equal to that. (John) I need to know what my weight is before I had drinks. So the first time I would weigh myself would be first thing in the morning, without eating or drinking and after going to the toilet in my under-garments and that way I would know that that is more or less the true weight. And I could deduct what ever I weighed, if I weigh myself 2 or 3 times a day. (Barbara) During therapy, the following participant’s bulimia improved considerably, although her anxiety about eating in public remained: It’s got to a point where I do accept that what I thought I should be able to exist on in a day was completely unrealistic. And no wonder if you are starving yourself to that extent you are going to end up bingeing, I used to starve all day and just have a bottle of wine in the evening. I am still very frightened to go to a wedding because I will have to deal with the food. (Ann) Food has various symbolic and instrumental functions for people with SEED. It can be an absorbing interest, a way of passing time pleasurably and an obsession. Conversely, the avoidance and denial of eating is a form of masochism and reflects a considerable degree of self-loathing. Eating poor quality food (we are aware of patients with SEED-AN who eat out of bins) can reflect the individual’s extremely low self-worth. Occupation Living with SEED also made it difficult to work. Thus, a combination of low energy and poor physical health limited the ability to maintain work in the short or long term. Psychological problems, poor working relationships and regular hospitalization, all contributed to constant job changes and eventual low employability. The narratives also suggest that the illness is in itself, a full time occupation, requiring constant attention and development. Of interest, various participants worked within the voluntary sector, usually in charity shops, reporting that this was a manageable occupation, which, importantly, offered some access to social contact. I mean I did work on the computer for two or three years (in the early 90s) but it’s so intense that your concentration can’t pack it for the whole day. I did start doing part-time but … it was still quite a long day for me going to work on hardly anything, like a half a piece of bread maybe, and then not having anything until you get home, which was about 6–7 hours later. You just can’t do that. Human resources knew that I was struggling and we came to an agreement that I would be retired early due to ill health because I just couldn’t do it. (Beth) I had various jobs for short periods of time, with a carpenter, with jewellers, I worked as a care taker. … I thought I have to do something with my life so I went into teacher

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training. But … my weight was already getting quite low and I was getting quite anorexic in my behaviour and thinking. So I completed one year of that course and then I had to go into hospital so that came to an end. … I seemed to lose interest in work and it seemed more important that I planned my meals and my walks. (John) Treatment We were interested to discover what participants wanted from services and, importantly, what they did not want. In spite of feelings of unworthiness, Claire was very clear that she wanted regular and reliable contact:

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The SEED patients have, over many years, become ‘experts by experience’ who view clinical services as a form of maintenance rather than a place for a cure. They have carefully nurtured their illness, managing to maintain some degree of balance between complete physical and psychological disintegration, and a life, albeit impoverished, in the community. To this extent, ED services exist to assist the patient maintain this balance. In some sense too, ED clinicians have become like surrogate families, representing vital sources of support and friendship as well as people who had access to life-saving technologies. Our interviewers noticed that attachment in some participants developed very quickly:

She was not happy that her nurse had discharged her when her weight was stable:

I feel very relaxed, (in the research interview) it’s like talking to a friend, although some of that I haven’t even said to a friend, but it’s nice to get myself free of some of those things I’ve been feeling guilty about for lots of years, not actually verbally said about them, and sharing it with someone. (Claire)

Yes, my weight was stable but it was very low and I am obviously not functioning properly and I obviously need support so I feel very angry and very upset about it.

Clinicians should not underestimate the life-saving potential of these attachments, especially in the days of brief therapy and rotational clinical posts.

Peter wanted a doctor who gave him boundaries:

Key themes identified We identified 15 key themes in the narratives and present those themes in Table 1. In the physical realm, the main themes were severe symptoms that were, nevertheless being managed and somewhat minimized by the participants. In the psychological realm, most of the themes related to depression, hopelessness and continuing ED symptoms, but others, including resilience and positivity, as well as inability to spend, were found. The social realm was profoundly affected with isolation and absence of intimate relationships, together with an avoidance of social contact so

Contact with the hospital and a regular nurse but then I feel guilty taking up the nurses’ time….

I’ve got a very-very good consultant, who has given me boundaries to cope with … he knows my limitations and I know mine and we have come to some … agreements … and how I can stay out of hospital as long as I maintain my weight and keep very good contact with the … nurse and my weight needs to be checked regularly … He gave me a weight that I have to stick to, keep over; that’s when I fall below the borderline that he wants me to have hospital admission and if I keep over that threshold, 2 or 3 kilos over it means that I can stay out of hospital. In some cases, the patient would request admission for his own reasons, thus taking some control over his own treatment: I’ve got a more of an unbalanced way of thinking. My mind is not clear, because my mind is fuzzy and I feel more unstable in myself mentally. It could counterbalance my physical so that’s why I asked for hospital admission this time. One participant made it clear that she valued the ‘tougher’ rules on the inpatient unit of which she had been aware in the past: I have to admit that here it’s got very slack, the rules and how it used to be before. People couldn’t get away with acting out their behaviours like they can now and it’s not a good thing. (Barbara)

Table 1 The principle themes that emerged in the course of interviews with study participants

Realm Physical

Psychological

Social

The hospital services were seen as vital:

Family of origin

And I think just be left solely on my own, I don’t know if I would be able to cope really. … So, as I said I always have to be in contact with hospital services, so I wouldn’t give up on myself. (Beth)

Occupation Treatment

Feature Severe symptoms Minimization Self management Unworthiness Frugality Depression, OCD Resilience, positive experiences Continuing body image disturbance Isolation Avoidance No intimate relationship Negative responses Improvement late in disorder No paid work Importance of strong therapeutic relationship

Number of participants reporting 6 5 2 4 4 6 4 3 4 5 5 5 2 7 4

OCD, obsessive–compulsive disorder.

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that participants appeared to be actively courting isolation as a less threatening option to having to deal with people. Family issues were also mixed, with much that was negative, but also some improvement late in the illness, suggesting acceptance by family members. In the occupation theme, absence of paid work was frequent, and lastly, discussion of treatment revealed the great importance of a stable therapeutic relationship, even if contact was not that frequent. The overall impression was of a profoundly disabling illness which the patient was making great efforts to manage effectively.

Discussion To our knowledge this is the first qualitative study of a group of patients with a history of AN for over 20 years. In extensive interviews with these eight individuals, we have identified 15 key themes, presented earlier. The study confirms that the difficulties experienced by patients with SEED-AN are seen in many realms: psychological, social and family realms being the most salient, with occupational and physical problems not far behind. Some features were striking. Unworthiness and self-loathing perhaps linked to depression, while frugality suggested obsessive–compulsive features, (Godier & Park, 2014; Thiel, Broocks, Ohlmeier, Jacoby, & Schussler, 1995) hoarding (Halmi et al., 2003) and the capacity of patients with AN to delay monetary, as well as food, rewards (Steinglass et al., 2012). Our participants’ preoccupation with time may be a feature of AN with a longer history, and this requires further study. A negative view of the future, expressed by some of our participants, has been noted (Erikson, Hansson, & Lundblad, 2012; Sternheim et al., 2012), and a wish for the relief of social isolation was found in letters requesting inpatient care at an Eating Disorders Unit (Gorse, Nordon, Rouillon, Pham-Scottez, & Revah-Levy, 2013). The harshness with which our participants judged themselves and restricted any potentially pleasurable activity is consistent with previous studies (Sternheim et al., 2012; Tierney & Fox, 2010). We suggest that management of SEED-AN should transcend all realms, as already noted (Arkell & Robinson, 2008; Robinson, 2009, 2014; Wonderlich et al., 2012). Touyz et al. (2013) demonstrated that cognitive behaviour therapy was superior to supportive therapy in terms of both social adjustment and ED symptoms. Wonderlich et al. (2012) express the view that reduction in ED symptoms should not be aggressively pursued in patients with a chronic illness, but that quality of life should be the focus. This leads us to consider that rather than a conventional medical approach of symptom reduction, we might consider what has been termed a recovery approach (Dawson, Rhodes, & Touyz, 2014b; Slade, 2010) in which increasing quality of life is the aim of interventions. Such a shift in emphasis would suggest studies in which complex biopsychosocial interventions are compared with treatment as usual, and the primary outcome measures would be quality of life and social adjustment. Turton et al. (2009) in a qualitative study, demonstrated that recovery principles including social inclusion and recovery as a long term process were relevant to patients in an EDs service, and, like our participants, that regular contact with a knowledgeable professional was of great importance. 324

Our study suggests that family attitude can exacerbate difficulties, and studies on expressed emotion in EDs (Winn et al., 2007) support this proposal. Wonderlich et al. (2012) suggest that involving the family could well be helpful, and while conventional family therapy has not in general been found useful in chronically ill patients (Eisler et al., 1997), the carer training workshop model may have greater promise (Treasure et al., 2007). A striking finding in our study was the fact that the participants we interviewed were not all crushed by their long illnesses, but showed signs of resilience and pride at their achievements. A previous qualitative study of participants with AN (Higbed & Fox, 2010) reported that positive attributes of the ED were described. AN was seen as meaningful, providing a sense of control, eliciting love and attention and providing a feeling of achievement and superiority. Rutter (2012), writing on resilience in general, suggests that resilience to adversity (such as a chronic illness) varies between people for multiple reasons including genetic, developmental and personality factors. We wonder whether increased resilience in our participants might have made survival to a late stage in the illness more likely. Health services for patients with severe and enduring AN will come mainly from primary care and specialist services, with a contribution from generic psychiatric teams and the voluntary sector. Specialist ED units are not evenly spread in the UK, but they are increasing in number, and the improved status of EDs within the main professional organizations in psychiatry and psychology (British Psychological Society, 2014; Royal College of Psychiatrists, 2014a) has been accompanied by an increase in services in the public and private sector (Royal College of Psychiatrists, 2012). Specialist services should be encouraged by the finding that psychological interventions can improve the symptoms and quality of life of patients with SEED-AN (Touyz et al., 2013). Specialist ED units also need to provide inpatient care for patients with SEED-AN whose weight or other parameters lead to substantially increased risk. Questions such as the aims of inpatient care and the length of admission require controlled studies to answer. Whether patients with SEED-AN could be managed in intensive community care, rather than prolonged inpatient care, as seems to be the case for adolescents (Herpertz-Dahlmann et al., 2014) should also be studied. Our study suggests, however, that SEEDAN patients are often ready to work collaboratively with services to optimize their care, and such ‘Experts by Experience’ (Care Quality Commission, 2014) should, we believe, be included in planning groups for their services. Moreover, patients with SEED-AN that are admitted to medical units because of acute medical problems, need the attention of specialist ED staff in addition to those with medical expertise so that such admissions can be successful (Royal College of Psychiatrists, 2014b). Lastly, it should be remembered that however long a patient has suffered SEED-AN, full recovery always remains possible (Dawson, Rhodes, & Touyz, 2014a), although it may become less likely with the passage of years (Robinson, 2014). Researchers’ reflections on the findings This study benefited from the building and maintenance of a trusting relationship with the participants, in some cases, over several sessions and months. The interviewers were experienced psychologists with considerable depth of knowledge and skill in

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working with this client group. Interviewers were impressed by the wealth of detail provided, by the elements of resilience and positivity mixed in with the difficulties, and ultimately by the profound sadness, shared by the interviewers, conveyed by people who had endured severe AN for many years. The attachment to the interviewers that sometimes developed within the context of the interviews seemed to reflect the barren social lives experienced by the participants, and interviewers were sometimes left feeling somewhat guilty that they could not respond to requests by participants for more meetings. Strengths and limitations To our knowledge this is the first study to explore systematically the experiences of participants with severe and enduring AN of over 20 years duration. These are survivors of an illness with a

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Severe and enduring anorexia nervosa (SEED-AN): a qualitative study of patients with 20+ years of anorexia nervosa.

Little is known about how patients with long-term eating disorders manage their clinical problems. We carried out a preliminary qualitative study (usi...
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