Barriers and facilitators to treatment in severe and enduring eating disorders: a mixed-methods study of access, engagement, and lived experience

Objective An estimated 20 to 30% of individuals with eating disorders (EDs) experience protracted illness trajectories, often referred to as severe and enduring eating disorders (SEED). Research examining the systemic, relational, and experiential factors that influence access to and engagement with care in this population remains limited. This mixed-methods study aimed to explore the structural, clinical, and interpersonal barriers and facilitators shaping treatment experiences among individuals with longstanding EDs. Method An explanatory sequential mixed-methods design was employed with 41 participants. Stage One involved an online survey assessing demographic characteristics, diagnostic history, treatment exposure, and symptom severity, with descriptive statistics used to characterise the sample. Stage Two comprised of in-depth semi-structured interviews exploring lived experiences of treatment access and engagement. Qualitative data were analysed using reflexive thematic analysis informed by transcendental phenomenology. Results All participants reported an illness duration of seven years or more, with heterogeneity observed in diagnostic profiles, overall duration of illness, self-reported recovery stage, and treatment exposure. Two higher-order qualitative themes were identified; “Barriers to Care” included diagnostic and conceptual exclusion, weight-based bias, systemic access constraints, coercive practices, and misalignment between treatment models and patient needs. “Facilitators of Engagement and Recovery” comprised compassionate, individualised, and trauma-informed care, peer connection, and the integration of lived experience and advocacy. Discussion Individuals with SEED are a diverse population who report frequent exposure to structural, relational, and treatment-related barriers, while also identifying salient facilitators that support therapeutic engagement and recovery. Findings from this exploratory study suggest that more responsive, inclusive, and person-centred models of care may help address the complex needs of individuals with SEED. Trauma-informed and neurodiversity-affirming approaches, particularly those that integrate lived experience, may help mitigate the systemic and clinical barriers identified across both access and treatment contexts. Plain English Summary People with longstanding eating disorders often face significant difficulties when seeking help. These challenges may include being excluded from treatment based on their weight, diagnosis, or life stage, or encountering services that feel rigid, unsafe, or invalidating. This study explored the barriers and facilitators to care experienced by 41 adults in Australia with a range of eating disorder diagnoses and at different stages of recovery. Using a combination of surveys and in-depth interviews, we found that participants commonly described delayed or denied access to care, particularly when their needs did not fit expected treatment pathways. Experiences of stigma, misdiagnosis, and trauma within healthcare settings were also frequently reported. These experiences led to a loss of trust in services and contributed to feelings of exclusion and hopelessness. However, participants also shared what had helped them engage with care. Supportive relationships with clinicians, connection with peers, and being offered choices in their treatment were especially important. Participants emphasised the value of trauma-informed, person-centred, and eurodiversity-affirming approaches that responded to their unique needs and respected their autonomy. Our findings show that to improve care for people with longstanding eating disorders, we must move beyond one-size-fits-all models and meaningfully address the structural and relational barriers that many continue to face.