“I’m still here, but no one hears you”: a qualitative study of young women’s experiences of persistent distress post family-based treatment for adolescent anorexia nervosa

Abstract

Background Family-based treatment (FBT) is the current treatment of choice for adolescent AN based on positive outcomes that include weight restoration in around two-thirds of adolescents. Nevertheless around a quarter drop-out from treatment, particularly in the earlier phases, and a notable proportion of treated adolescents are reported to experience ongoing psychological distress during and post-treatment. This study explores the under-researched experiences of these adolescents. Method Fourteen participants from Australia, New Zealand and the United Kingdom were interviewed about their experiences of FBT. An inductive thematic analysis of interview transcript data generated key themes related to their experiences, identity negotiations and the discursive materials these used to construct these. Results The participants identified working as a family unit as key to their recovery, highlighting the importance of family therapy interventions for adolescent AN. However, they perceived an almost exclusive focus on weight restoration in the first phase of FBT was associated with experiences that included a relative neglect of their psychological distress and a loss of voice. Key within these experiences were processes whereby the adolescent engaged in identity negotiation and (re)claiming of their voice and implicit in their family standing with them in the treatment was that their life was worth saving. What was noted as most helpful was when therapists advocated and took into consideration their unique needs and preferences and tailored treatment interventions to these. Conclusions There is a need to develop and research treatments that address, from the outset of treatment, the adolescents’ psychological distress (including as experienced in the context of their weight restoration). This should be with priority accorded to the adolescent’s voice and identity negotiations, as they and their families take steps to address the physical crisis of AN and in doing so, support more holistic and durable recovery.

Changes in the eating disorder voice over time and the association of voice characteristics at baseline with clinical symptoms in patients with anorexia nervosa

“…Furthermore, in this study, standard treatment failed to target psychological distress successfully, which adds to the literature highlighting that intensive interventions for anorexia nervosa might not be as effective on psychological symptoms as they are on some aspects of the eating disorder psychopathology (e.g., Hemmingsen et al, 2022; Monteleone et al, 2022; Murray et al, 2019). Patients themselves refer to psychological distress as a dimension hardly touched over the course of nutritional rehabilitation and weight gain and further develop this argument by reporting that treatment might inadvertently discourage from keeping in touch with difficult feelings (Conti et al, 2021).…”

Processes of change in family therapies for anorexia nervosa: a systematic review and meta-synthesis of qualitative data

“…Neglect of young people's emotional distress. Young people frequently described FBT as an isolating process that ignored "what was going on inside" wherein their parents and therapist did not understand how distressing increasing their eating and weight was [30,31,50,55]:…”

A case series to test the acceptability, feasibility and preliminary efficacy of AVATAR therapy in anorexia nervosa

“…One of the most important barriers to recovery, identi ed by patients, is the di culty in developing an identity beyond the illness (5,6). In the acute phase of anorexia nervosa, the illness's identity often coexists with the individual's weakened sense of self and it is referred to as the "eating disorder voice" (7,8).…”