Using Photovoice Methods to Set Research Priorities With Autistic People With Experience of an Eating Disorder

Objective

Autism and Autistic traits are heightened in individuals with eating disorders (EDs), with Autistic people reporting poorer treatment outcomes and experiences. Despite this, mechanisms of this overlap remain poorly understood, perhaps due to an exclusion of lived experience perspectives in setting research agendas. The study therefore sought to identify research priorities for Autistic people with an eating disorder (ED) by using accessible and inclusive arts-based research methodologies. 

Method

Research questions were explored using Photovoice, a creative research methodology involving the creation and discussion of images. 14 participants attended group workshops, in two of which they explored research priorities for Autistic people with an ED. Images and transcripts were analysed using an adapted Photovoice Question Matrix (production, content and meaning of the image) and thematic analysis. Participants had the opportunity to provide feedback on emerging themes before themes were finalised.

Results

Five themes were identified that highlighted research priorities for Autistic people with an ED: (1) Impact of early experiences (with subthemes Internalizing of socio-cultural food and body narratives and generational cycles); (2) Function of the ED (with sub-themes ED as a regulatory strategy and ED as a social acceptance strategy); (3) Barriers and facilitators to ED recovery (with sub-themes Autistic traits as barriers, Autistic traits as facilitators and Help and harm of unravelling); (4) Understanding and accommodating for complexity (with sub-themes Co-occurring conditions and Intersectionality); and (5) Changing research culture (with sub-themes Inclusive and participatory research and Nonclinical support).  

Conclusions

Study findings are contextualised within existing autism and ED research, highlighting avenues for future research and making recommendations for future research questions. By identifying community-driven research priorities, it is hoped that study findings will inspire novel, interdisciplinary and co-produced research that will serve as a meaningful evidence base towards improving the lives of Autistic people with an ED.