Capacity of community advisory boards for effective engagement in clinical research: a mixed methods study

BMC Medical Ethics

Joseph Ochieng¹  Mastula Nanfuka²  Fedress Kaliba³  Andrew Mijumbi³  Levicatus Mugenyi³  Collins Agaba³  Winfred Badanga Nazziwa⁴  Irene Seryazi Semakula⁴ 

[1] College of Health Sciences, Makerere University, Kampala, Uganda;Makerere University-John Hopkins University Collaboration, Kampala, Uganda;The AIDS Support Organization, Kampala, Uganda;Uganda National Council for Science and Technology, Kampala, Uganda;

关键词: CABs;    Capacity;    Research communities;    Community engagement;    Research ethics;    Training;    Knowledge;   

DOI  :  10.1186/s12910-021-00733-0

来源: Springer

【 摘 要 】

BackgroundCommunity engagement is a key component in health research. One of the ways health researchers ensure community engagement is through Community Advisory Boards (CABs). The capacity of CABs to properly perform their role in clinical research has not been well described in many resource limited settings. In this study, we assessed the capacity of CABs for effective community engagement in Uganda.MethodsWe conducted a cross sectional study with mixed methods. We used structured questionnaires and key informant interviews (KII) to collect data from CAB members, trial investigators, and community liaison officers. For quantitative data, we used descriptive statistics while for qualitative data we used content analysis.ResultsSeventy three CAB members were interviewed using structured questionnaires; 58.9% males, median age 49 years (IQR 24–70), 71.2% had attained tertiary education, 42.5% never attended any research ethics training, only 26% had a training in human subject protection, 30.1% had training in health research, 50.7% never attended any training about the role of CABs, and 72.6% had no guidelines for their operation. On the qualitative aspect, 24 KIIs cited CAB members to have some skills and ability to understand and review study documents, offer guidance on community norms and expectations and give valuable feedback to the investigators. However, challenges like limited resources, lack of independence and guidelines, and knowledge gaps about research ethics were cited as hindrances of CABs capacity.ConclusionThough CABs have some capacity to perform their role in the Ugandan setting, their functionality is limited by lack of resources to facilitate their work, lack of independence, lack of guidelines for their operations and limited knowledge regarding issues of research ethics and protection of the rights of trial participants.

【 授权许可】

CC BY