Working with the Bristol Somali community to improve outcomes for children with autism

Studies have found that children whose parents have migrated from Somalia to western countries, including the UK, may be at greater risk of developing autism than children from other groups. Autism is a condition that affects social interaction, communication and behaviour.

We worked closely with people from the Somali community on a project to find out about the experiences of Somali families, living in Bristol, who have a child with autism and to understand how autism is understood in their community, and how health and social care services can be best delivered to support them.

CLAHRC West researchers Sabi Redwood and Fiona Fox adopted a community-based participatory research approach to get Somali people involved in this project. This approach is based on principles of community engagement and empowerment, mutual respect and co-learning, as well as commitments to action and improvement. This way of working attempts to reduce health inequalities in potentially marginalised groups with few material and social resources to draw on, so that services can be adapted to meet needs.

The topic of this study was identified as important by community members and early ideas and plans were discussed at a community meeting with parents. We conducted this exploratory study in partnership with the University of Bristol and Autism Independence (AI), a community based group that supports members of the Somali community who are affected by autism. This collaborative approach aimed to inform preliminary recommendations for services and further research.

High rates of autism in children of Somali migrants mean that they have greater needs in relation to autism services. The Somali population in Bristol is large at about 10,000 people, and the number of families affected by autism is rising. Not much is known about their needs including experiences of getting a diagnosis, barriers to care, and culture specific aspects of care. The study aimed to gather information about the needs of this group in order to provide the high quality services that this often marginalised population requires.

The study was done in partnership with AI, whose aim is to raise awareness of autism, and to educate and empower affected people and their families, especially those with little or no previous knowledge about autism and those with limited access to services. Members of AI were involved in all aspects of the research, from deciding research questions and the conduct of the research, developing recommendations on the basis of the findings, and dissemination.

The approach, study plan and methods were negotiated between researchers and members of AI over several face-to-face meetings at a local community centre, telephone conversations and email exchanges. The founder and director of AI, Nura Aabe, led the negotiations, providing ‘cultural brokerage’ not just between the white European background of the researchers and the local Somali community, but also mediating between AI’s members’ enthusiasm for quick action and improvement, and the slower pace required for research processes. Research materials, including information flyers, and the interview schedule were developed and produced in English and Somali through collaboration with Nura and the research team.

Due to the study context and its exploratory and collaborative nature, a qualitative, interview-based approach was chosen. Parents were invited to participate in the study by Nura, who initially posted an invitation on a WhatsApp group for AI. Nine families expressed an interest and took part in interviews. After initial interviews the project group agreed that Nura should directly contact some additional specific families to request their participation and six more parents agreed to take part.

The interview questions were developed by the research team at two meetings with members of AI, and then refined through a practice interview. Interviews were conducted by Nura and Fiona, with Nura providing ongoing translation where participants chose to speak in Somali. Typed up transcripts of the interviews were checked against the audio recording by Nura, who added to and edited sections spoken in Somali.

After the first three interviews both Fiona and Nura worked together to analyse the information collected. The themes and codes identified were discussed with the steering group, and Fiona then analysed the remaining interviews based on the agreed structure. Findings from the study have been written up, and there are plans to hold a community meeting in the next few months to share the findings and seek feedback.

For more information about this project contact Fiona Fox on f.fox@bristol.ac.uk.

Autism Independence has a website at www.autism-independence.org or contact Nura Aabe on hello@autism-independence.org.