Perspectives on barriers to treatment engagement of people with eating disorder symptoms who have not undergone treatment: a qualitative study

Background Many people with an eating disorder (ED) never engage with an evidence-based ED treatment. Of the few studies that have qualitatively explored barriers to receiving treatment, some do so in relation to mental health conditions in general, and others focus on participants who have already undergone treatment. This study aims to address this gap in the literature by exploring the barriers to ED treatment engagement from the perspectives of individuals in the community with an ED (either self-identified or professionally diagnosed) and had not received ED treatment/s. Method Fifty-six of 772 participants in an online Eating Disorders Treatment Experience survey had self-identified as having symptoms consistent with an ED, or had received a diagnosis of an ED and indicated that they had never undergone treatment for an ED. They were asked to share the reasons for which they did not receive treatment with an open-ended question. Qualitative analysis of survey responses was completed using the Framework Method to generate overarching themes that encapsulated the diverse participant accounts. Results The thematic analysis generated two main themes, each with two subthemes. The first theme was the negotiation of the need for treatment within oneself (intrapersonal factors; theme 1). The second theme explored interpersonal contexts that shaped the participant's decision not to seek treatment (interpersonal/external factors; theme 2). Two cross-cutting subthemes of fear and health literacy were also generated that demonstrated a high degree of overlap with the aforementioned main themes. Conclusions The process by which individuals decide whether or not to engage with ED treatment services is complex and involves intra- and interpersonal negotiations intertwined with health literacy and fear. A factor not prominent in previous research was negative self-perceptions and the belief of being undeserving of treatment. These factors have implications for ongoing community and clinical interventions to further address barriers to ED treatment engagement.