"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

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 dropout 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.