Published: 20 May 2019
When I joined the ethnography team at the NIHR Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West), I was asked to work on a project about autism in the local Somali community. Although I knew little about autism, I welcomed the opportunity to co-produce research with one of our local migrant communities.
Nura Aabe submitted the idea for research to CLAHRC West. Read her story: How I turned my life experiences into a NIHR-funded research project.
Nura and I developed a strong relationship as colleagues and co-researchers. We conducted every aspect of the research together for from planning, data collection, analysis and dissemination. Our combined experiences and expertise contributed to the success of this qualitative study. For example, as a member of the community, Nura was able to plan interviews around prayer times and periods of fasting.
After 15 years as a qualitative researcher, interviewing in two languages was a novel experience for me. Nura's role as an interpreter was more challenging than my own, as she tried to convey meaning to both myself and the participants. At times she would interpret my question and also explain or re-phrase it, using words that were more familiar to participants. I really enjoyed sharing the responsibility for collecting this highly sensitive and important data from the parents. At the end of the interviews, Nura and I were able to immediately de-brief and reflect on the interviews, which was enriching for both of us, particularly when the interview had been emotionally charged. A good deal of trust developed between us as we shared the experiences of data analysis and dissemination.
Together we gave a series of presentations at professional conferences, community events and to local health and social care partners, using clips from the play ‘Yusuf can’t talk’ to illustrate the research findings. Audiences engaged with this format and many commented that the findings have resonance for other migrant and BME communities. Such feedback encouraged Nura to seek more ambitious channels of dissemination. She connected with local MP’s, leading to an invitation to present to the All Party Parliamentary Group on Autism at the House of Commons. The combination of these activities was also picked up by the media. Local and national radio and television coverage followed on Women's hour, BBC and BBC World Service and Buzzfeed. All of this culminated in Nura’s TED X talk.
Interest in the research led to numerous demands on AI as an organisation and on Nura’s time. We discussed how we could address this and began to consider how to use the co-produced knowledge for greater impact. Together we applied for and were successful in gaining, funding from the ESRC Impact Acceleration Account to produce a short film to promote culturally sensitive services to support Somali families affected by autism. The film ‘Overcoming barriers: autism in the Somali community’ had two aims:
- to increase understanding and tackle stigma among all Somali migrant communities improve awareness of culture-specific issues in autism among health, education and social care professionals, trainees and policymakers.
- It will be embedded in existing training for all three sectors and is freely available online for wider use. Since launching the film (with versions in English and Italian Somali) in April it has been viewed more than 50,000 times.
Forming a close working relationship as co-researchers has been for me extremely rewarding. Continuing our work together to improve understanding and communication between Somali families and professionals is a valuable extension of this partnership.