Inside, outside and in‐between

The process and impact of co‐producing knowledge about autism in a UK Somali community

Bibliographic Data

ID19508731
AuthorsNura Aabe (0000-0003-4899-8140, Autism Independence Bristol UK, corresponding author), Fiona Fox (0000-0001-7313-8105, National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care West (NIHR CLAHRC West) and Bristol Medical School University of Bristol Bristol UK), Dheeraj Rai (0000-0002-7239-3523, Population Health Sciences, Bristol Medical School University of Bristol Bristol UK), Sabi Redwood (0000-0002-2159-1482, National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care West (NIHR CLAHRC West) and Bristol Medical School University of Bristol Bristol UK)
Year2019
Volume22
Issue4
Pages752-760
Publication date2019-08-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.12939
PMID31318129
OpenAlexW2950932694
LanguageEN
Citations received6
References cited19

BACKGROUND: 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. AIM: 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 organization, 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 organizations. DISCUSSION: 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 is 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 and (2) co-produced research can become a catalyst that is dynamic and complex, achieving multi-layered impact

Citizen journalism · Co-Creation · Community-based participatory research · Knowledge management · Management · Participatory action research · Pedagogy · Political science · Public relations · Social science · Sociology · Somali · Transformative learning · Computer Science · Health Policy Implementation Science · Mental Health and Patient Involvement · Participatory Visual Research Methods · Psychology

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