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WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS

Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement s...

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Autores principales: Angwenyi, Vibian, Kamuya, Dorcas, Mwachiro, Dorothy, Marsh, Vicki, Njuguna, Patricia, Molyneux, Sassy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Blackwell Publishing Ltd 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662994/
https://www.ncbi.nlm.nih.gov/pubmed/23521823
http://dx.doi.org/10.1111/dewb.12015
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author Angwenyi, Vibian
Kamuya, Dorcas
Mwachiro, Dorothy
Marsh, Vicki
Njuguna, Patricia
Molyneux, Sassy
author_facet Angwenyi, Vibian
Kamuya, Dorcas
Mwachiro, Dorothy
Marsh, Vicki
Njuguna, Patricia
Molyneux, Sassy
author_sort Angwenyi, Vibian
collection PubMed
description Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information sharing and identifying potential participants; thereby taking on roles that overlapped with those of employed fieldworkers (FWs). While CHWs involvement was generally perceived as positive and appreciated, there were challenges in their relations with FWs and other community members, partly related to levels and forms of remuneration. Specifically, payment of CHWs was not as high as for FWs and was based on ‘performance’. This extrinsic motivation had the potential to crowd out CHWs intrinsic motivation to perform their pre-existing community roles. CHWs remuneration potentially also contributed to CHWs distorting trial information to encourage community members to participate; and to researchers encouraging CHWs to utilize their social connections and status to increase the numbers of people who attended information giving sessions. Individual consent processes were protected in this trial through final information sharing and consent being conducted by trained clinical staff who were not embedded in study communities. However, our experiences suggest that roles and remuneration of all front line staff and volunteers involved in trials need careful consideration from the outset, and monitoring and discussion over time.
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spelling pubmed-36629942013-05-24 WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS Angwenyi, Vibian Kamuya, Dorcas Mwachiro, Dorothy Marsh, Vicki Njuguna, Patricia Molyneux, Sassy Dev World Bioeth Articles Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information sharing and identifying potential participants; thereby taking on roles that overlapped with those of employed fieldworkers (FWs). While CHWs involvement was generally perceived as positive and appreciated, there were challenges in their relations with FWs and other community members, partly related to levels and forms of remuneration. Specifically, payment of CHWs was not as high as for FWs and was based on ‘performance’. This extrinsic motivation had the potential to crowd out CHWs intrinsic motivation to perform their pre-existing community roles. CHWs remuneration potentially also contributed to CHWs distorting trial information to encourage community members to participate; and to researchers encouraging CHWs to utilize their social connections and status to increase the numbers of people who attended information giving sessions. Individual consent processes were protected in this trial through final information sharing and consent being conducted by trained clinical staff who were not embedded in study communities. However, our experiences suggest that roles and remuneration of all front line staff and volunteers involved in trials need careful consideration from the outset, and monitoring and discussion over time. Blackwell Publishing Ltd 2013-04 2013-03-22 /pmc/articles/PMC3662994/ /pubmed/23521823 http://dx.doi.org/10.1111/dewb.12015 Text en Copyright © 2013 Blackwell Publishing Ltd http://creativecommons.org/licenses/by/2.5/ Re-use of this article is permitted in accordance with the Creative Commons Deed, Attribution 2.5, which does not permit commercial exploitation.
spellingShingle Articles
Angwenyi, Vibian
Kamuya, Dorcas
Mwachiro, Dorothy
Marsh, Vicki
Njuguna, Patricia
Molyneux, Sassy
WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title_full WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title_fullStr WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title_full_unstemmed WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title_short WORKING WITH COMMUNITY HEALTH WORKERS AS ‘VOLUNTEERS’ IN A VACCINE TRIAL: PRACTICAL AND ETHICAL EXPERIENCES AND IMPLICATIONS
title_sort working with community health workers as ‘volunteers’ in a vaccine trial: practical and ethical experiences and implications
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662994/
https://www.ncbi.nlm.nih.gov/pubmed/23521823
http://dx.doi.org/10.1111/dewb.12015
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