Lived Experience Collaboration in Eating Disorders Research: Perspectives of Those With Lived Experience, Carers, Clinicians and Researchers

Erica Neill; Stephanie Miles; Rosiel Elwyn; Grace Fountas; Inge Gnatt; Zoe Jenkins; Amy Malcolm; Selma Music; Tamara Simpson; Caitlin Yolland; Andrea Phillipou

doi:10.1002/erv.70091

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Lived Experience Collaboration in Eating Disorders Research: Perspectives of Those With Lived Experience, Carers, Clinicians and Researchers

Journal article

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Lived Experience Collaboration in Eating Disorders Research: Perspectives of Those With Lived Experience, Carers, Clinicians and Researchers

Erica Neill, Stephanie Miles, Rosiel Elwyn, Grace Fountas, Inge Gnatt, Zoe Jenkins, Amy Malcolm, Selma Music, Tamara Simpson, Caitlin Yolland, …

European Eating Disorders Review, Vol.Advanced access

26-Feb-2026

DOI: https://doi.org/10.1002/erv.70091

PMID: 41744417

Appears in Thompson Institute Research Collection

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Abstract

Clinical psychology

Clinical and health psychology

Eating disorders

lived experience

co-design

co-production

anorexia nervosa

bulimia nervosa

ARFID

binge eating disorder

consumer academics

participatory action research

benefits and risks

carers

collaboration

Thompson Institute Special Collection

Other Collaborations

Objective The importance of including people with a lived experience (LE) of eating disorders (ED) in the development and conduct of research is being recognised for the value it brings to the field. While the risks and benefits are beginning to be understood, there is still a lack of clarity around how to support LE partners through the process. This study examined perspectives on LE collaboration in ED research from individuals with personal LE, carers, clinicians, and researchers. Methods An online survey yielded 122 participants: 71 with personal LE, 37 carers, 21 clinicians, and 18 researchers. Results While researchers generally supported LE collaboration, carers were more hesitant. Across groups, the main perceived benefit was producing more meaningful research and improved treatments, while the primary concern was the risk of relapse for LE contributors. Views varied on the appropriate illness stage for LE involvement, though most agreed that readiness should be assessed collaboratively. Researchers strongly endorsed the development of ED-specific guidelines for LE engagement. Conclusions Overall, each of the groups valued LE input but identified a need for clearer guidance on safe and effective collaboration.

Details

Title: Lived Experience Collaboration in Eating Disorders Research: Perspectives of Those With Lived Experience, Carers, Clinicians and Researchers
Authors: Erica Neill (Corresponding Author) - The University of Melbourne
Stephanie Miles (Author) - The University of Melbourne
Rosiel Elwyn (Author) - University of the Sunshine Coast, Queensland, Thompson Institute
Grace Fountas (Author) - Swinburne University of Technology
Inge Gnatt (Author) - The University of Melbourne
Zoe Jenkins (Author) - St Vincent's Hospital Melbourne
Amy Malcolm (Author) - The University of Melbourne
Selma Music (Author) - Swinburne University of Technology
Tamara Simpson (Author) - Swinburne University of Technology
Caitlin Yolland (Author) - Swinburne University of Technology
Andrea Phillipou (Author) - The University of Melbourne
Publication details: European Eating Disorders Review, Vol.Advanced access
Publisher: John Wiley & Sons Ltd.
DOI: 10.1002/erv.70091
ISSN: 1099-0968
PMID: 41744417
Copyright note: © 2026 The Author(s). European Eating Disorders Review published by Eating Disorders Association and John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
Data Availability: The data that support the findings of this study are available from the corresponding author upon reasonable request.
Organisation Unit: Thompson Institute
Language: English
Record Identifier: 991209381102621
Output Type: Journal article

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