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

BackgroundCo-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?MethodsFive 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.ResultsFour 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.DiscussionConducting 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. Co-production is the collaboration between researchers and the lived experience community in designing, conducting and sharing research. This study brought together Autistic people with lived/living experience of an eating disorder (ED), researchers, clinicians, third sector organisations and parents/carers to understand what the barriers (challenges) and facilitators (how to overcome these challenges) were to ethical co-production with Autistic people with an eating disorder. Common barriers were found to be unequal partnerships, difficulty accessing research, feeling or being excluded by a reliance on diagnoses and the impact of communication differences. Facilitators were felt to be a shared power dynamic, focusing on establishing relationships not just tokenistic roles and creating fair and person-centred compensation. Facilitators were also adapting for communication differences and moving away from harmful medicalised and ableists models, towards autism-affirming practice. It is hoped that the study will encourage discussion and positive co-production relationships between autism and ED researchers and the Autistic and ED community. It is also hoped that that this approach will lead to more meaningful research that will ultimately improve the lives of Autistic people with an ED.