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Inside, outside and in-between: The process and impact of co-producing knowledge about autism in a UK Somali community

Research output: Contribution to journalArticle

Original languageEnglish
Pages (from-to)752-760
Number of pages9
JournalHealth Expectations
Issue number4
Early online date18 Jul 2019
DateAccepted/In press - 12 Jun 2019
DateE-pub ahead of print - 18 Jul 2019
DatePublished (current) - 1 Aug 2019


Co-production is predicated on equal power sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co-researchers achieve such equality, from the perspectives of public contributors and researchers.

This paper aims to provide a unique insight into the process of co-production, by weaving personal reflections with principles to evaluate the impact arising from co-produced knowledge. It is based upon participatory research that was initiated by a ‘lay’ person, on behalf of a community organisation, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co-researchers and community organisations.

Initially this paper reflects on the process, drawing on principles defined for co-production in health research and combining it with the co-researcher’s personal reflections of their experiences as insiders and outsiders, stepping in and out of each other’s worlds. The value of reciprocity, flexibility and continuous reflection are illustrated.
The latter part of the paper explores the impact of this co-produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how; (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change; (2) co-produced research can become a catalyst that is dynamic and complex, achieving multi-layered impact.

    Research areas

  • autism, co-production, co-researchers, community, impact, knowledge, participatory, qualitative, research, Somali

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    Licence: CC BY


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