Barriers and facilitators to ethical co-production with Autistic people with an eating disorder

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Nimbley, E., Maloney, E., Buchan, K., Sader, M., Gillespie‐Smith, K., & Duffy, F. (2024). Barriers and facilitators to ethical co-production with Autistic people with an eating disorder. Journal of Eating Disorders, 12(1), 113-113. https://doi.org/10.1186/s40337-024-01076-y

Publication date: 9 Aug 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Emy Nimbley
  2. Ellen Maloney *
  3. Kyle Buchan
  1. Michelle Sader
  2. Karri Gillespie‐Smith
  3. Fiona Duffy

Abstract

BACKGROUND: Co-production is the collaboration between researchers and the lived experience community in designing, conducting and sharing research. The importance of co-production is increasingly advocated in both the autism and eating disorder fields. Despite this, there remains a lack of clarity at how to define, apply and conduct ethical co-production. Understanding common challenges and what we can do to overcome these challenges are integral to ensuring ethical and meaningful research with Autistic people with an eating disorder. The current study therefore explored: What are the barriers and facilitators to ethical co-production with Autistic people with an ED? METHODS: Five workshops were conducted with 30 collaborators exploring barriers and facilitators to ethical co-production. Synchronous (online workshops) and asynchronous (offline discussion forum) data was analysed using thematic analysis. Themes were co-produced by a neurotypical and Autistic researcher with lived/living experience of an eating disorder. RESULTS: Four themes were identified that explored barriers to ethical co-production: unequal partnerships, the inaccessibility of research, excluded by diagnoses and communication differences. Three themes were identified with regards to facilitators of ethical co-production: shared power (with sub-themes relationships, not roles and creative compensation), clarity and transparency and autism-affirming approaches. DISCUSSION: Conducting ethical co-production with Autistic people with eating disorders has the potential to generate meaningful research that can be translated into improving the lives of the Autistic and eating disorder community. To achieve this, co-production teams should strive towards shared power and long-term relationships, adapting for communication differences and preferences and operating firmly within an autism-affirming framework. It is hoped that study findings will inspire collaboration, discussion and novel, translatable research.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
69
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 69 (11.6%)
Cited author occurrences identified as autistic
15 / 355 (4.2%)
Among occurrences linked to AutiHub author records: 15 / 108 (13.9%). Distinct cited authors identified as autistic: 13 / 300 (4.3%).
Cited author occurrences linked to AutiHub author records
108 / 355 (30.4%)
Distinct linked cited authors: 70 / 300 (23.3%)
Linked cited-author occurrences not identified as autistic
93 / 108 (86.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 93 / 355 (26.2%). Distinct linked cited authors not identified as autistic: 57 / 70 (81.4%).
4 cited bibliography entries could not be fully enriched from DOI metadata.
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