Simon, Kathleen; (2024) Evaluation of the EDE-QS: Considering a Clinical Threshold and Measuring Eating Disorder Symptoms in a Gender-expansive Sample. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

Background: Eating disorders (ED) are conditions which are associated with a considerable negative impact on individuals, their families and wider society. Gender-expansive (GE) individuals have a higher vulnerability to developing EDs compared to their cisgender counterparts, but experience barriers to treatment (Duffy et al., 2016; Riddle et al., 2022). There is a need to further explore the experience of GE individuals when accessing ED treatment. Aims: This study aimed to synthesise information on gender-expansive service users’ perspectives on accessing eating disorder services. Method: A systematic search across three databases, Emcare, Medline and PsychInfo was conducted to identify qualitative studies reporting the perspectives of gender-expansive service users on the barriers, accessibility and experience of ED treatment. Participants of the studies had gender-expansive identities who had experience in seeking treatment for an eating disorder, that was diagnosed or self-identified. The review was pre-registered on Prospero (CRD42023445367). Studies were evaluated for quality. A meta-ethnography of the qualitative studies was conducted to develop overarching themes of each research study’s findings. Results: Eight studies were identified. Qualitative analysis revealed five broad over-arching themes: “Unseen, unheard, unsafe: How transphobia and erasure are interwoven in ED treatment”; “The felt burden of inappropriate and inadequate care on the individual”; “ Resourcefulness of gender-expansive individuals in the face of adversity”; “Interplay of lack of education with stigma compound societal transphobia attitude and rhetoric” and “What gender-affirming care looks like and how it can be developed”. Individuals reported difficult experiences with eating disorder services, namely due to a lack of clinician understanding of gender identity and the focus of treatment being based on cisgender norms. The negative experiences were felt to reflect wider narratives of invisibility, power and systemic injustice. Participants and authors share their hopes and recommendations to improve the accessibility of eating disorder services. Conclusions: Recent qualitative studies of eating disorder services suggest significant changes are required before equitable and excellent care can be provided to gender-expansive individuals. Findings highlight ways in which services can actively engage in transforming eating disorder healthcare, improving accessibility, increasing safety, and tailoring interventions to consider gender identity, to improve mental health outcomes for gender-expansive individuals.

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