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Contextualising and challenging under-representation in research in light of Cultural Trauma: a qualitative focus group and interview study

Fryer, Kate; Hutt, Isobel; Aminu, Habiba; Linton, Emma; White, Johanna; Reynolds, Josie; Mitchell, Caroline

Authors

Kate Fryer

Isobel Hutt

Habiba Aminu

Emma Linton

Johanna White

Josie Reynolds



Abstract

Background: Although underserved populations— including those from ethnic minority communities and those living in poverty—have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research. Methods: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. Results: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. Conclusions: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.

Citation

Fryer, K., Hutt, I., Aminu, H., Linton, E., White, J., Reynolds, J., & Mitchell, C. (in press). Contextualising and challenging under-representation in research in light of Cultural Trauma: a qualitative focus group and interview study. Research Involvement and Engagement, 10(1), Article 69. https://doi.org/10.1186/s40900-024-00600-3

Journal Article Type Article
Acceptance Date Jun 17, 2024
Online Publication Date Jul 2, 2024
Deposit Date Jul 8, 2024
Publicly Available Date Jul 8, 2024
Journal Research Involvement and Engagement
Print ISSN 2056-7529
Electronic ISSN 2056-7529
Publisher BioMed Central
Peer Reviewed Peer Reviewed
Volume 10
Issue 1
Article Number 69
DOI https://doi.org/10.1186/s40900-024-00600-3
Keywords Diverse, Underserved, Participation, Minority, Inclusion, Inequality, Primary care, Deprivation, Inequity, Representation
Public URL https://keele-repository.worktribe.com/output/872180
Publisher URL https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00600-3

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Contextualising and challenging under-representation in research in light of Cultural Trauma: a qualitative focus group and interview study (2.5 Mb)
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Licence
https://creativecommons.org/licenses/by/4.0/

Publisher Licence URL
https://creativecommons.org/licenses/by/4.0/

Copyright Statement
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.





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