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

Why is this research important?  
While it is known that many people with an eating disorder never engage in treatment, until now there has been no study which examines the particular barriers for this group. This study begins to address that gap. This is important because understanding the specific barriers that a group of people face in relation to treatment is crucial in informing work to address, mitigate or remove those barriers. 
 
While previous studies have examined the barriers to treatment for people with eating disorders who nevertheless went on to access treatment at some point, this study makes a novel contribution in that it addresses the specific perspectives and experiences of people who never went on to receive treatment.  
 
For people who had never received treatment for their eating disorder, there were both intrapersonal (self-perception and identifying with the eating disorder (ego-syntonicity)) and interpersonal/environmental factors (stigma, perceived lack of support, and perceptions of mental health professionals and treatment). Feelings of fear and issues relating to health literacy (the ability to make appropriate healthcare choices and navigate the system) were sub-themes that cut across all intrapersonal and interpersonal factors. The inter-relationships between these themes were dynamic and complex. The authors argue that this complexity stops people from accessing eating disorder treatments.  
 
These findings have implications for clinical practice, in recognising the intra- and interpersonal barriers to help-seeking and working to address these. This may include supporting the person to understand that they are deserving of treatment and understanding subtleties in the presentation of eating disorder signs and symptoms. 

Authors:  Livia Liu, Phillipa Hay and Janet Conti 

Abstract/Summary:  
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 sub-themes. 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. 
  
Access:  Open 
  
Link:  https://doi.org/10.1186/s12888-022-03890-7  
  
Citation: Liu, L., Hay, P. & Conti, J. Perspectives on barriers to treatment engagement of people with eating disorder symptoms who have not undergone treatment: a qualitative study. BMC Psychiatry 22, 239 (2022). https://doi.org/10.1186/s12888-022-03890-7