In a small study, patients offered perceptions
of AN, the staff, and relationships.
Reprinted from Eating Disorders Review
September/October Volume 24, Number 5
©2013 Gürze Books
Chronic anorexia nervosa (AN) is challenging for everyone—patient, clinician, and family–because motivation to recover may be low and positive outcomes can be difficult to achieve. Patients may wish to recover but at the same time appear to be unable to make any significant changes.
Drs. John R.E. Fox and Pascal Diab of the University of Manchester, UK, have provided some new insights into patients’ perceived experiences of living with AN while being treated on an eating disorders unit. In this study, 6 participants were recruited from two eating disorders treatment units (J Health Psychol. 2013 Aug. 9 [Epub ahead of time]. Patients were admitted when they were either at high risk physically, for example, with a very low body mass index (BMI, kg/m2), such as <14 kg/m2, or when they were at high risk of self-harm. All participants had undergone at least two different therapies during the course of their AN, and all had BMIs in the 14 to 15 kg/m2 range. The study used Interpretative Phenomenological Analysis (IPA), a technique that offers insights into how a given person, in a given context, makes sense of a given phenomenon.
Six broad questions were posed to the patients: (1) Can you tell me about how you developed anorexia? (2) For what reasons do you think that anorexia has continued to be prevalent in your life? (3) What have your experiences of treatment/therapy been like? (4) How do you think professionals view anorexia? (5) What have your relationships been like with other people with anorexia? (6) How do you see your life in the future? Five major themes emerged after the data were analyzed.
Theme 1: Making sense of AN
The patients described how they overlooked or denied the onset of AN, and how it took a long time before they could admit that they were struggling with an eating disorder. Ironically, this process of “making sense” of the disorder appeared to strengthen their relationship with their AN, and all participants described how they came to realize that AN addressed difficulties in their lives that were present before onset of the illness. The patients perceived that AN developed as a result of negative evaluations of the self in comparison to others, or from grief and loss and difficulties managing and expressing emotion. Thus, they believed their illness enabled them to cope with these adverse feelings and emotions. AN was clearly valued, for it gained attention from others; prior to developing AN, the patients often felt lonely and socially disconnected. As they became more ill, friends and family became much more focused on the patient and her needs. Through this experience participants began to develop a new identity, with AN at the heart of who they were.
Theme 2: Treatment/refeeding
Refeeding was a particularly difficult area for the participants. The experience of being refed was distressing; however, one participant reported feeling relieved that professionals took the control from her. Chronic AN gave participants a sense of control, and going through refeeding often led to an intense feeling of losing control, being more vulnerable, and sometimes was traumatic. On the eating disorders unit, a small number of patients were subjected to restraint feeding because they could not accept nutrition voluntarily. For the participants with chronic AN, the experience of restraint feeding only led to a greater entrenchment of the eating disorder.
Theme 3: Interpersonal relationships
The participants discussed their struggles with relationships and often did not feel they had the skills or confidence to make or keep friendships or other relationships, so they stayed trapped in their chronic disease. The researchers felt that the experience of living in the hospital exacerbated such difficulties because the patients were living way from family and friends.
The importance of the therapeutic relationships with the staff was paramount, according to the authors, and trust and belief in the expertise of their clinicians were important in their perception of effective care. Staff appeared to be particularly important to the patients, who would often seek them out to talk to rather than to other patients on the wards. For others, therapy seemed counterproductive because they could attend therapy sessions while still losing weight.
Theme 4: Battling AN
The participants’ relationship with their AN was dynamic, according to the authors; that is, it was often hated but also valued. The dynamic relationship between the self and the chronic disease appeared to be a battle that patients felt destined to lose. Some said they had been anorexic for so long that it would always be part of their lives.
Theme 5: Effects of pessimistic staff members
The data highlighted that staff, both within the inpatient and outpatient services, could be pessimistic about the patient’s ability to recover and often seemed overwhelmed by the patients’ stories. Study participants discussed how the negativity of certain staff exacerbated their own feelings of isolation and reinforced their wish to remain anorexic.
Interpersonal relationships were all-important to patients
According to the authors, the major theme to emerge from their study was the importance of interpersonal relationships. The participants struggled to build meaningful relationships, and the relationships that they did have were under pressure while they were on the ward and isolated from significant others. Participants also expressed their belief that staff could be more helpful if they had a clear understanding of the eating disorder and offered more support, as well as having the skills to help the patients open up about their key emotions. Study participants felt they were locked in a constant battle with their chronic AN, and that they became pessimistic and had reduced hope for recovery when they were working with staff with inadequate knowledge about chronic AN.