Enhanced or hindered research benefits? A realist review of community engagement and participatory research practices for non-communicable disease prevention in low- and middle-income countries.

INTRODUCTION: Community engagement and participatory research are widely used and considered important for ethical health research and interventions. Based on calls to unpack their complexity and observed biases in their favour, we conducted a realist review with a focus on non-communicable disease prevention. The aim was to generate an understanding of how and why engagement or participatory practices enhance or hinder the benefits of non-communicable disease research and interventions in low- and middle-income countries. METHODS: We retroductively formulated theories based on existing literature and realist interviews. After initial searches, preliminary theories and a search strategy were developed. We searched three databases and screened records with a focus on theoretical and empirical relevance. Insights about contexts, strategies, mechanisms and outcomes were extracted and synthesised into six theories. Five realist interviews were conducted to complement literature-based theorising. The final synthesis included 17 quality-appraised articles describing 15 studies. RESULTS: We developed six theories explaining how community engagement or participatory research practices either enhance or hinder the benefits of non-communicable disease research or interventions. Benefit-enhancing mechanisms include community members' agency being realised, a shared understanding of the benefits of health promotion, communities feeling empowered, and community members feeling solidarity and unity. Benefit-hindering mechanisms include community members' agency remaining unrealised and participation being driven by financial motives or reputational expectations. CONCLUSION: Our review challenges assumptions about community engagement and participatory research being solely beneficial in the context of non-communicable disease prevention in low- and middle-income countries. We present both helpful and harmful pathways through which health and research outcomes are affected. Our practical recommendations relate to maximising benefits and minimising harm by addressing institutional inflexibility and researcher capabilities, managing expectations on research, promoting solidarity in solving public health challenges and sharing decision-making power.

Engaging communities in non-communicable disease research and interventions in low- and middle-income countries: a realist review protocol.

INTRODUCTION: Engaging communities and intended beneficiaries at various stages of health research is a recommended practice. The contribution of community engagement to non-communicable disease research in low- and middle-income countries has not yet been extensively studied or synthesised. This protocol describes the steps towards generating an understanding of community engagement in the context of non-communicable disease research, prevention and health promotion using a realist review approach. A realist lens enables a rich explanatory approach to causation while capturing complexity, and an openness to multiple outcomes, including unintended consequences. The review will thus develop an understanding of community engagement without assuming that such practices result in more ethical research or effective interventions. METHODS AND ANALYSIS: We propose a realist approach aiming to examine how, why, under what circumstances and for whom community engagement works or does not work. The iterative review steps include clarifying the review scope; searching for evidence; appraising studies and extracting data; synthesising evidence and drawing conclusions; and disseminating, implementing and evaluating the findings. Principles of meta-narrative review (pragmatism, pluralism, historicity, contestation, reflexivity and peer review) are employed to ensure practicable and contextualised review outputs. The proposed review will draw on theoretical and empirical literature beyond specific diseases or settings, but with a focus on informing non-communicable disease research and interventions in low- and middle-income countries. The synthesis of existing literature will be complemented by qualitative realist interviews and stakeholder consultation. Through drawing on multiple types of evidence and input from both experts and intended beneficiaries, the review will provide critical and pragmatic insights for research and community engagement in low- and middle-income countries. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the University of the Witwatersrand. Dissemination will include traditional academic channels, institutional communications, social media and discussions with a wide range of stakeholders.