Severe and Enduring Eating Disorders: A Qualitative Study of Patients' Experiences and Perceived Treatment Needs

Approximately 25% of individuals with eating disorders develop severe and enduring eating disorders (SEEDs); yet effective treatments remain limited. This study explored lived experiences of SEEDs, focussing on past treatments, as well as current needs and hopes.

Twenty participants with eating disorders of ≥ 7 years and prior treatment engagement were interviewed about treatment experiences and needs. Transcribed interviews were analysed using phenomenologically informed thematic analysis.

Four main themes emerged: (1) treating the weight, the illness or the person; (2) the attitude of the professionals; (3) the need for specialised treatment; and (4) losing control. The first theme comprised sub-themes: (a) too much focus on weight, (b) one size doesn't fit all, and (c) finding and connecting with the person. Participants found individual tailored treatments, multidisciplinary teams, and specialised ED treatments beneficial. Many felt that their unique situation and needs were overshadowed by a predominant emphasis on weight or inflexible treatment protocols.

The findings support evidence suggesting that treatment should shift from a primary focus in body weight towards more individualised approaches that promote sustainable care and strengthen therapeutic alliances. Future research should examine ways for balancing necessary restrictions with flexibility in inpatient and involuntary care.