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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...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2017
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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. |
format | Online Article Text |
id | pubmed-6491972 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2017 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
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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