TY - JOUR
T1 - A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya
AU - Vreeman, Rachel
AU - Kamaara, Eunice
AU - Kamanda, Allan
AU - Ayuku, David
AU - Nyandiko, Winstone
AU - Atwoli, Lukoye
AU - Ayaya, Samuel
AU - Gisore, Peter
AU - Scanlon, Michael
AU - Braitstein, Paula
N1 - Funding Information:
We would like to acknowledge the work of Eunice Walumbe in the transcription and translation of the mabaraza proceedings. This work was funded by a grant from the National Institute of Child Health and Human Development (NICHD) to Dr. Paula Braitstein (1R01HD060478-01A1) to improve the health and well-being of orphaned and separated children. Dr. Vreeman was also supported by a grant from the National Institute for Mental Health (NIMH) (1K23MH087225-01.) In addition, this research was supported in part by a grant to the USAID-AMPATH Partnership from the United States Agency for International Development as part of the President’s Emergency Plan for AIDS Relief (PEPFAR).
Funding Information:
Samuel Ayaya is a Professor in the Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences in Eldoret, Kenya and Co-Chair of the Kenya Pediatric Research Working Group. His research interests include children’s nutrition, growth, and development, the progression of HIV in children, and child abuse and neglect. Peter Gisore is a Lecturer in the Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences in Eldoret, Kenya. His interests center around clinic and community-based research on maternal and newborn health. Michael Scanlon is a Global Pediatric Clinical Research Scholar with Indiana University School of Medicine and the AMPATH partnership. He is focused on research to support long-term care of children with HIV in resource-limited settings, including disclosure of HIV status and adherence to HIV therapy, as well as community-based participatory research. Paula Braitstein is Associate Research Professor of Medicine at Indiana University School of Medicine, Co-Field Director for Research for the Academic Model Providing Access to Healthcare (AMPATH), and Co-Principal Investigator for the Orphaned and Separated Children’s Assessments Related to their Health and Well-being (OSCAR) research study in western Kenya, which is funded by the National Institute of Child Health and Human Development (1R01HD060478-01A1). Her research expertise lies in evaluating care outcomes including for HIV-infected patients, orphans, separated children, and other vulnerable populations.
PY - 2012
Y1 - 2012
N2 - Background: International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings. Methods. We sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. Results: Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. Conclusions: Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.
AB - Background: International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings. Methods. We sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. Results: Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. Conclusions: Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.
KW - Community-based research
KW - Ethics
KW - Informed consent
KW - Kenya
KW - Sub-Saharan Africa
UR - http://www.scopus.com/inward/record.url?scp=84866558023&partnerID=8YFLogxK
U2 - 10.1186/1472-6939-13-23
DO - 10.1186/1472-6939-13-23
M3 - Article
C2 - 23009744
AN - SCOPUS:84866558023
SN - 1472-6939
VL - 13
JO - BMC Medical Ethics
JF - BMC Medical Ethics
IS - 1
M1 - 23
ER -