What did we find?
We report the results as two elements
1) How do we talk about autism in culturally and ethnically diverse communities
2) What makes it easier to participate in research (see next block)
The methods are the same for both
Who took part? Participants were recruited through a community-led approach facilitated by the Led EbEs and researchers. Using their relationships with trusted local organisations and informal networks, the Lead EbEs and RAs invited individuals via social media. This strategy helped address the problem of self-selection bias, which often results in the overrepresentation of white, middle-class, and institutionally connected individuals in PR settings (Bombard et al., 2018; Maye et al., 2022).
Recruitment materials were intentionally simple and accessible
What did we do? We ran four online focus groups, which were co-delivered with a research team member and 4 culturally and ethnically diverse EbEs who were matched to focus group backgrounds. 18 focus group members took part from Black Christian background and South Asian background (Hindu, Muslim, Sikh). Mostly, parents/carers of autistic children participated.
Analysis: Focus groups were recorded and transcribed, and we then conducted a deductive thematic analysis. This approach allowed us to focus on core questions about content needed to create a framework to help researchers recruit EbEs and participants from culturally and ethnically diverse groups. This was split into two aspects.
We asked, how do we talk about autism? Below are key themes found.
1. Misunderstandings and lack of awareness from the wider community.
2. Immediate family and/or partner support is important, but can be tricky.
2. Diverse experiences of inclusion in culturally/religious spaces
3. Early years (nurseries/school) are an important time for starting the autism journey.
4. Parent advocacy and wanting to be part of the change.
See quotes here for themes here
We asked, "What makes it easier to participate in research?" Three themes were identified.
1) Motivations for taking part in research (sub-themes: desire to contribute and wanting to learn).
2) Factors that made participation easier (Sub-themes: safe and culturally sensitive spaces, role of experts by experience, shared lived experience and community connection)
3) What participants received and shared.
See quotes here for themes here
We used focus group findings and project insights to create guidance for researchers on how to recruit culturally and ethnically diverse people to autism research
Insights from our Experts by Experience.
Insights from the Sikh group by Dr Gurnam Singh
Insights from EbE on the research journey by Misra Mohammed
Poetry as an insight into the research journey by John Bernard - see webinar.