Nyirenda Deborah, Sariola Salla, Gooding Kate, Phiri Mackwellings, Sambakunsi Rodrick, Moyo Elvis, Bandawe Chiwoza, Squire Bertie, Desmond Nicola
Dev World Bioeth. 2018 Dec;18(4):420-428. doi: 10.1111/dewb.12163. Epub 2017 Sep 5.
Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group (CAG) members' selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members' abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.
社区参与以保护和赋权参与的个人及社区是研究中的一项伦理要求。然而,关于一些用于改善伦理实践的方法的有效性或相关性的证据有限。我们开展了一项研究,以了解社区参与健康研究的基本原理、相关性和益处。本文取材于这项更广泛的研究,重点关注影响马拉维社区咨询小组(CAG)成员选拔过程和职能的因素。采用了定性研究设计;与CAG成员举办了两次参与式研讨会,以了解他们在研究中的角色。研讨会的结果与来自人种学实地记录的见解、对利益相关者的关键信息提供者访谈、与社区成员的焦点小组讨论以及文件审查进行了三角互证。数据进行了手动编码,并使用主题内容分析来确定主要问题。结果表明,CAG成员的民主选拔在城市和农村环境中都面临挑战。我们还注意到,CAG成员将他们的角色视为一种就业形式,这可能导致无法有效代表社区利益。我们得出结论,民主投票不足以确保有效代表具有伦理相关性的社区利益。CAG成员理解研究伦理、识别对社区的潜在危害以及向研究人员传达反馈的能力对于优化非专业社区的参与并避免象征性参与至关重要。