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‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi

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, r...

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Autores principales: Nyirenda, Deborah, Sariola, Salla, Gooding, Kate, Phiri, Mackwellings, Sambakunsi, Rodrick, Moyo, Elvis, Bandawe, Chiwoza, Squire, Bertie, Desmond, Nicola
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491972/
https://www.ncbi.nlm.nih.gov/pubmed/28872746
http://dx.doi.org/10.1111/dewb.12163
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author Nyirenda, Deborah
Sariola, Salla
Gooding, Kate
Phiri, Mackwellings
Sambakunsi, Rodrick
Moyo, Elvis
Bandawe, Chiwoza
Squire, Bertie
Desmond, Nicola
author_facet Nyirenda, Deborah
Sariola, Salla
Gooding, Kate
Phiri, Mackwellings
Sambakunsi, Rodrick
Moyo, Elvis
Bandawe, Chiwoza
Squire, Bertie
Desmond, Nicola
author_sort Nyirenda, Deborah
collection PubMed
description 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.
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spelling pubmed-64919722019-05-06 ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi Nyirenda, Deborah Sariola, Salla Gooding, Kate Phiri, Mackwellings Sambakunsi, Rodrick Moyo, Elvis Bandawe, Chiwoza Squire, Bertie Desmond, Nicola Dev World Bioeth Articles 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. John Wiley and Sons Inc. 2017-09-05 2018-12 /pmc/articles/PMC6491972/ /pubmed/28872746 http://dx.doi.org/10.1111/dewb.12163 Text en © 2017 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Articles
Nyirenda, Deborah
Sariola, Salla
Gooding, Kate
Phiri, Mackwellings
Sambakunsi, Rodrick
Moyo, Elvis
Bandawe, Chiwoza
Squire, Bertie
Desmond, Nicola
‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title_full ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title_fullStr ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title_full_unstemmed ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title_short ‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi
title_sort ‘we are the eyes and ears of researchers and community’: understanding the role of community advisory groups in representing researchers and communities in malawi
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6491972/
https://www.ncbi.nlm.nih.gov/pubmed/28872746
http://dx.doi.org/10.1111/dewb.12163
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