Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

Emy Nimbley; Ellen Maloney; Karri Gillespie-Smith; Helen Sharpe; Kyle Buchan; Sarah Kettley; Jessica Bragg; Alison Shepherd; Becky Choat; Joseph Long; Isla Whateley; Ollie Booth; Julie-Anne Baker; Nix Renton; Emily Nuttall; Harriet Darling; Lin Fidgin; Laura Campbell; Tasha Suratwala; Casper Temple; Kayleigh MacDonald; Sammi Carden; Bryanna Lazich; Jess Kerr-Gaffney; Michelle Sader; Gordon Waiter; Kate Tchanturia; Fiona Duffy; Eating Disorder and Autism Collaborative Network (EDAC)

doi:10.1080/10640266.2024.2441540

Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

Emy Nimbley
, Ellen Maloney
, Karri Gillespie-Smith
, Helen Sharpe
, Kyle Buchan
, Sarah Kettley
, Jessica Bragg
, Alison Shepherd
, Becky Choat
, Joseph Long
, Isla Whateley
, Ollie Booth
, Julie-Anne Baker
, Nix Renton
, Emily Nuttall
, Harriet Darling
, Lin Fidgin
, Laura Campbell
, Tasha Suratwala
, Casper Temple

Kayleigh MacDonald, Sammi Carden, Bryanna Lazich, Jess Kerr-Gaffney, Michelle Sader, Gordon Waiter, Kate Tchanturia, Fiona Duffy, Eating Disorder and Autism Collaborative Network (EDAC)

Research output: Contribution to journal › Article › peer-review

Abstract

There is a notable overlap between autism and eating disorders (EDs), and Autistic individuals may experience poorer ED treatment outcomes than non-Autistic peers. To make meaningful change in this field, it is imperative that we actively engage in co-production of research, however there are currently no guidelines to support co-production with Autistic people with eating disorders. This paper reports on Best Practice Guidelines that were co-produced across a series of workshops bringing together Autistic people with EDs, researchers, clinicians, third sector organisations and parents/carers. The guidelines are intended to be used as a foundation for future co-produced autism and ED research. By creating a trusted, ethical co-production relationship, we hope to generate more clinically meaningful and translatable research.

Original language	English
Pages (from-to)	1-11
Number of pages	11
Journal	Eating Disorders: The Journal of Treatment & Prevention (EDJTP)
Early online date	21 Dec 2024
DOIs	https://doi.org/10.1080/10640266.2024.2441540
Publication status	E-pub ahead of print - 21 Dec 2024

Keywords / Materials (for Non-textual outputs)

eating disorders
Autism
co-production

Access to Document

10.1080/10640266.2024.2441540

NimbleyEtal2024EDConductingEthicalCoProducedResearchAccepted author manuscript, 366 KBLicence: Creative Commons: Attribution (CC-BY)

1 Finished

Scottish Autism and Eating Disorders Research Collaborations
Gillespie-Smith, K. (Principal Investigator), Duffy, F. (Co-investigator), Kettley, S. (Co-investigator) & Sharpe, H. (Co-investigator)
Medical Research Council
1/08/23 → 31/07/26
Project: Research

1 Chapter
1 Exhibition

Conceptualisations of the body/person in psychology: paradigmatic implications for designing and design research
Kettley, S., 2026, (Accepted/In press) Designing for Bodies: The Somatic Expertise of Design Practice. Kaygan, H. & Nygaard Folkmann, M. (eds.). Bloomsbury
Research output: Chapter in Book/Report/Conference proceeding › Chapter
You're Not Alone
The Eating Disorder and Autism Collaborative (EDAC), 1 Mar 2025
Research output: Non-textual form › Exhibition

Open Access

1 Participation in workshop, seminar, course

Designing for Ecologies of Care
Rahman, S. (Organiser) & Kettley, S. (Organiser)
22 Aug 2025
Activity: Participating in or organising an event types › Participation in workshop, seminar, course

Cite this

Nimbley, E., Maloney, E., Gillespie-Smith, K., Sharpe, H., Buchan, K., Kettley, S., Bragg, J., Shepherd, A., Choat, B., Long, J., Whateley, I., Booth, O., Baker, J.-A., Renton, N., Nuttall, E., Darling, H., Fidgin, L., Campbell, L., Suratwala, T., ... Eating Disorder and Autism Collaborative Network (EDAC) (2024). Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines. Eating Disorders: The Journal of Treatment & Prevention (EDJTP), 1-11. Advance online publication. https://doi.org/10.1080/10640266.2024.2441540

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abstract = "There is a notable overlap between autism and eating disorders (EDs), and Autistic individuals may experience poorer ED treatment outcomes than non-Autistic peers. To make meaningful change in this field, it is imperative that we actively engage in co-production of research, however there are currently no guidelines to support co-production with Autistic people with eating disorders. This paper reports on Best Practice Guidelines that were co-produced across a series of workshops bringing together Autistic people with EDs, researchers, clinicians, third sector organisations and parents/carers. The guidelines are intended to be used as a foundation for future co-produced autism and ED research. By creating a trusted, ethical co-production relationship, we hope to generate more clinically meaningful and translatable research.",

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doi = "10.1080/10640266.2024.2441540",

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Nimbley, E, Maloney, E, Gillespie-Smith, K , Sharpe, H, Buchan, K, Kettley, S, Bragg, J, Shepherd, A, Choat, B, Long, J, Whateley, I, Booth, O, Baker, J-A, Renton, N, Nuttall, E, Darling, H, Fidgin, L, Campbell, L, Suratwala, T, Temple, C, MacDonald, K, Carden, S, Lazich, B, Kerr-Gaffney, J, Sader, M, Waiter, G, Tchanturia, K, Duffy, F & Eating Disorder and Autism Collaborative Network (EDAC) 2024, 'Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines', Eating Disorders: The Journal of Treatment & Prevention (EDJTP), pp. 1-11. https://doi.org/10.1080/10640266.2024.2441540

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AU - Maloney, Ellen

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AU - Sharpe, Helen

AU - Buchan, Kyle

AU - Kettley, Sarah

AU - Bragg, Jessica

AU - Shepherd, Alison

AU - Choat, Becky

AU - Long, Joseph

AU - Whateley, Isla

AU - Booth, Ollie

AU - Baker, Julie-Anne

AU - Renton, Nix

AU - Nuttall, Emily

AU - Darling, Harriet

AU - Fidgin, Lin

AU - Campbell, Laura

AU - Suratwala, Tasha

AU - Temple, Casper

AU - MacDonald, Kayleigh

AU - Carden, Sammi

AU - Lazich, Bryanna

AU - Kerr-Gaffney, Jess

AU - Sader, Michelle

AU - Waiter, Gordon

AU - Tchanturia, Kate

AU - Duffy, Fiona

AU - Eating Disorder and Autism Collaborative Network (EDAC)

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AB - There is a notable overlap between autism and eating disorders (EDs), and Autistic individuals may experience poorer ED treatment outcomes than non-Autistic peers. To make meaningful change in this field, it is imperative that we actively engage in co-production of research, however there are currently no guidelines to support co-production with Autistic people with eating disorders. This paper reports on Best Practice Guidelines that were co-produced across a series of workshops bringing together Autistic people with EDs, researchers, clinicians, third sector organisations and parents/carers. The guidelines are intended to be used as a foundation for future co-produced autism and ED research. By creating a trusted, ethical co-production relationship, we hope to generate more clinically meaningful and translatable research.

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KW - co-production

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M3 - Article

SN - 1532-530X

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JO - Eating Disorders: The Journal of Treatment & Prevention (EDJTP)

JF - Eating Disorders: The Journal of Treatment & Prevention (EDJTP)

ER -

Conducting ethical, co-produced research with Autistic individuals with an eating disorder: Best practice guidelines

Abstract

Keywords / Materials (for Non-textual outputs)

Access to Document

Fingerprint

Projects

Scottish Autism and Eating Disorders Research Collaborations

Research output

Conceptualisations of the body/person in psychology: paradigmatic implications for designing and design research

You're Not Alone

Activities

Designing for Ecologies of Care

Cite this