"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

Plain English summary Family-Based Treatment (FBT) is a well-established, intensive approach to the treatment of adolescent anorexia nervosa (AN). The first phase of treatment focuses on eating and weight restoration, where parents are given responsibility for the adolescent's home-based refeeding. This is followed by handing over of this responsibility to the adolescent with the final-phase a focusing on adolescent-specific psychological issues. While the majority of adolescents gain weight with this treatment, a substantive proportion experience ongoing psychological distress and around a quarter of families drop out in the first phase. Little is known about these adolescents' experiences. In this project, we interviewed 14 individuals who, with their family, had either dropped out of FBT and/or experienced ongoing psychological distress post-treatment. The participants noted that their parents' stance in supporting them was life-saving and contributed to a sense that their life was worth saving. However, they also noted a relative absence of focus on their psychological distress, particularly in the early stages of treatment. Most helpful for participants was when therapists took into consideration and tailored treatments to them. Future treatments need to consider ways to support an adolescent's psychological distress more comprehensively, prioritise their voice and support them in finding an identity outside of the AN identity. 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.