A paper focusing on co-producing research about autism in the Somali community has been published in a special issue of Health Expectations, an international journal on public participation in health care and health policy. The project involved researchers from community organisation Autism Independence, which supports Somali families in Bristol affected by autism, working alongside academics from NIHR CLAHRC West and the University of Bristol.
Co-production is based on equal responsibility and power sharing between researchers, practitioners and members of the public. It is increasingly recognised as the gold standard for research and service improvement. Whilst the theory of co-production has been debated, there are still few accounts that explore the personal perspectives of the partners involved in a co-produced project. ‘Inside, outside and in-between’ fills this gap through the personal reflections of Nura Aabe and Fiona Fox, who worked together to explore the experiences of autism in the Bristol Somali community.
Nura, who at the start of the project was a non-academic partner, is the lead author on this paper. This is fitting because the idea for the research originated with Nura, when she was struggling to understand her own son’s diagnosis of autism and she realised that autism was common amongst other Somali families. This motivated her to set up Autism Independence and led her to contacting researchers at the University of Bristol and NIHR CLAHRC West.
The paper reflects on the process of developing partnerships between academics and community members, to undertake qualitative research and how this model informed further dissemination and impact activities. It tells the story of how Nura and Fiona navigated their roles as insiders and outsiders to the academic world and the Somali community respectively. The paper also describes how the research findings were shared using theatre and film. This created many new opportunities for collaboration within the health, social care and education sectors, which illustrates the impact and broader transformative potential of co-produced knowledge.
The authors hope that by sharing their experiences and insights, other teams of researchers, practitioners and members of the public will be inspired to co-produce research that is local, collective and co-created.
Paper: Inside, outside and in-between: the process and impact of co-producing knowledge about autism in a UK Somali Community. Nura Aabe, Fiona Fox, Dheeraj Rai, Sabi Redwood