Lubieniecki Gabriel, McGrath Isabella, Sharp Gemma
Department of Neuroscience, School of Translational Medicine, Monash University, Melbourne, Australia.
School of Psychology, University of Queensland, Brisbane, Australia.
J Eat Disord. 2025 Sep 12;13(1):202. doi: 10.1186/s40337-025-01393-w.
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.
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.
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.
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.
估计有20%至30%的饮食失调患者经历了漫长的病程，通常被称为严重且持久的饮食失调（SEED）。关于影响该人群获得治疗及参与治疗的系统、关系和体验因素的研究仍然有限。这项混合方法研究旨在探讨影响长期饮食失调患者治疗体验的结构、临床和人际障碍及促进因素。
对41名参与者采用了解释性序列混合方法设计。第一阶段包括一项在线调查，评估人口统计学特征、诊断史、治疗经历和症状严重程度，使用描述性统计来描述样本。第二阶段包括深入的半结构化访谈，探索获得治疗及参与治疗的生活经历。定性数据采用基于先验现象学的反思性主题分析进行分析。
所有参与者报告病程为七年或更长时间，在诊断概况、总体病程、自我报告的康复阶段和治疗经历方面存在异质性。确定了两个高阶定性主题；“治疗障碍”包括诊断和概念上的排除、基于体重的偏见、系统获取限制、强制手段以及治疗模式与患者需求之间的不一致。“参与和康复的促进因素”包括富有同情心、个性化和注重创伤的护理、同伴联系以及生活经历与宣传的整合。
SEED患者群体多样，他们报告经常面临结构、关系和与治疗相关的障碍，但也确定了支持治疗参与和康复的重要促进因素。这项探索性研究的结果表明，更具响应性、包容性和以患者为中心的护理模式可能有助于满足SEED患者的复杂需求。注重创伤和肯定神经多样性的方法，特别是那些整合生活经历的方法，可能有助于减轻在获取治疗和治疗过程中发现的系统和临床障碍。
