Social Science, Malawi-Liverpool-Wellcome Trust Clinical Research Programme, Blantyre, Malawi
Faculty of Social Sciences, Sociology, University of Helsinki, Helsinki, Finland.
BMJ Glob Health. 2022 Apr;7(4). doi: 10.1136/bmjgh-2021-007563.
Several studies in Africa have reported effects of 'rumours, misconceptions or misinformation' on medical research participation and uptake of health interventions. As such, community engagement has sometimes been used for instrumental purposes to enhance acceptability of research or interventions and prevent 'rumours'. This paper seeks to highlight the value of ongoing engagement with communities to understand research narratives 'rumours' reproduced in medical research. We demonstrate that 'rumours' are a form of divergent communication or local interpretation of medical research that needs critical attention, and we question the ethics of dismissing such divergent communication.This paper draws on experiences from ethnographical research, which aimed to understand community engagement in medical research projects conducted in Malawi. We observed that even though community meetings were held to improve participation, 'rumours' about research influenced decision making. 'Rumours' presented local critiques of medical research, legitimate concerns informed by historical experiences and local conceptualisation of health. Structural inequalities, negative outcomes or absence of visible benefits following research participation informed unmet expectations, discontent with research and consequently passive resistance. The sociocultural context where participating research communities often rely on social networks for information nurtured propagation of these divergent perspectives to inform lay discourse around medical research.We conclude that ongoing engagement, critical self-reflection and attempts to decode deeper meaning of 'rumours' throughout research implementation is necessary, to show respect and address community concerns expressed through 'rumours', enhance informed participation and adoption of future health interventions.
一些非洲的研究报告指出，“谣言、误解或错误信息”对医疗研究参与和卫生干预措施的接受度有影响。因此，社区参与有时被用于实现特定目的，以提高研究或干预措施的可接受性，并防止“谣言”的产生。本文旨在强调与社区保持持续互动以理解医学研究中重现的研究“谣言”的价值。我们表明，“谣言”是对医学研究的一种发散式沟通或当地解读，需要引起重视，我们质疑轻视这种发散式沟通的伦理道德。本文借鉴了在马拉维开展的医学研究项目中进行民族志研究的经验。我们观察到，尽管召开了社区会议以提高参与度，但有关研究的“谣言”还是影响了决策。“谣言”对医学研究提出了当地批判，这些批判是基于历史经验和对健康的当地概念化的合理担忧。结构不平等、研究参与后的负面结果或缺乏明显收益导致了期望未得到满足、对研究的不满以及随之而来的消极抵制。参与研究的社区往往依赖社交网络获取信息的社会文化背景助长了这些发散性观点的传播，从而影响了围绕医学研究的大众话语。我们的结论是，在整个研究实施过程中，需要进行持续的互动、批判性的自我反思，并尝试解码“谣言”的深层含义，以表示尊重并解决通过“谣言”表达的社区关切，增强知情参与和未来卫生干预措施的采用。
