EDAC will comprise of four integrated workstreams over two years that will be used to support the creation of an interdisciplinary network to carry out collaborative and living/lived experience led research in eating disorders and autism.
1. Coming together – Ethics and Collaborative Working
Workstream 1 will form the basis for all future research in the network, bringing together the community to outline best collaborative research practice that will inform all future work aligned with EDAC. It will consist of a five workshops with Autistic individuals who have living/lived experience of eating disorders, researchers and clinicians to create guidelines on the co-production of research in this field. A parallel process will also take place to support the development of guidance for individuals with intellectual disabilities. The five workshops will reflect on barriers to, and facilitators of co-production, before identifying ethical considerations at each stage of the research process, specific to the Autism and eating disorders community. The guidance, including agreement on the use of language, will inform the principles that will underpin EDAC, its workstreams and any research aligned with the network.
2. Setting the Agenda – Arts-based Priority Setting
Workstream 2 will use arts-based methods to capture the experiences of being Autistic with an eating disorder. This works stream will primarily use photovoice where participants are asked to take images that capture their experiences to share and discuss with the research team, supporting a shared narrative. We will focus on recruiting individuals from diverse and under-represented groups. The images and narrative will be analysed to document the experiences of individuals with eating disorders, to set research priorities and the photographs themselves will form part of an exhibition, raising awareness of the needs and issues of this community.
3. Testing the Approach – Interdisciplinary Networking
Workstream 3 will be a series of small research studies aimed at supporting collaborative working and tackling the research priorities set by Autistic individuals with living/lived experience of eating disorders in Workstream 2. This work will provide a space to test out innovative cross disciplinary approaches. Applications from researchers proposing a specific study, will be reviewed, and shortlisted by trained Autistic individuals with living/lived experience of eating disorders. It is hoped that outcomes will include: (1) Bridging of the eating disorder and autism research communities, collaborating on research addressing priorities set by Autistic individuals with living/lived experience; (2) Proof-of-concept or pilot studies that will inform larger grant proposals; (3) Connections and networks between multi-sites carrying out research in autism and eating disorders; and (4) Development opportunities for early career researchers, including Autistic peer researchers.
4. Knowledge Mobilisation - Policy and Clinical Partnerships
We know that there is a significant delay in integrating research into clinical practice and policy. To support this Workstream 4 will host a policy-clinical think tank event. This will involve two workshops with clinicians, clinical service managers and policy makers to discuss barriers and facilitators to incorporating neurodiversity-affirming research into policy and clinical practice. Workstream 4 will also include the implementation of the PEACE pathway (Pathway for Eating Disorders and Autism developed from Clinical Experience: www.peacepathway.org in two Scottish ED Services, diversifying from its initial primary focus on adult eating disorder inpatient environments. This will include the co-production of an assessment toolkit for eating disorders in Autistic individuals, incorporating research findings from prior workstreams and the extended literature directly into clinical practice.
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