- Abstract
- 10.1136/spcare-2025-mcrc.3
OP-3 Community researchers in end-of-life care research addressing intersectional inequalities: a rapid realist review and evaluation of the why, the how, for whom and in what circumstances
- Feb 01, 2025
- BMJ Supportive & Palliative Care
- Jamilla Akhter Hussain + 7 more +7
There is limited understanding about the end-of-life experiences of intersectionally marginalised groups. A potential way to support greater access and inclusion of such individuals in research is to have community researchers as part of the core research team. Community researchers here are defined as individuals with similar social identities, heritage and location to the research participants of interest.However, how best to work with community researchers in the context of structural inequalities at the end-of-life remains poorly understood.AimWe aimed to elicit and test programme theories on how to effectively work with community researchers in end-of-life care research focussing on intersectional inequalities.MethodsA rapid realist review and evaluation were conducted. The review elicited programme theories to understand what works for whom, under what circumstances, how and why (Context-Mechanism-Outcome). These theories were then evaluated through a 12-month feasibility study where three Pakistani women from a structurally disadvantaged and ethnically diverse UK city formed part of a research team led by two women from a similar background.ResultsThree overarching programme theories were developed including (i) how power was structured, acknowledged and navigated, (ii) mechanisms of inclusion of the community researchers and participants, (iii) importance of reciprocal relationships and the tensions this posed with academic expectations, ethics procedures and structures.ConclusionCommunity researchers are key assets to enable better and safer access and inclusion of intersectionally marginalised individuals in end-of-life care research. However, addressing evolving power imbalances at multiple levels is essential to mitigate against the extractive nature of research practice.ImpactBy centring power sharing, inclusion and relationships, trust can be built in a manner that re-humanises research practice. This improves not only the quality of inequalities research but also the well-being of the entire research team. The need for adequate resources to enable this is essential.
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