Mangochi, H; Gooding, K; Bennett, A; Parker, M; Desmond, N; Bull, S
(2019)
How should assent to research be sought in low income settings? Perspectives from parents and children in Southern Malawi.
BMC Med Ethics, 20 (1).
p. 32.
ISSN 1472-6939
https://doi.org/10.1186/s12910-019-0369-7
SGUL Authors: Bennett, Aisleen
Abstract
BACKGROUND: Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines on assent. Understanding perspectives among children and their parents can assist in developing contextually-appropriate assent guidance. METHODS: Qualitative research was conducted with children and parents in three settings in Southern Malawi (low- and high-income urban and rural), to take account of any variations between socioeconomic and cultural contexts. In each setting, interviews were conducted with parents and their children who had participated in paediatric research to understand their experiences of assent and views on appropriate assent practice. Focus groups were also conducted with children and parents, to understand broader social perspectives. RESULTS: We found widespread support for involving children in decisions on research participation. Participants identified a range of factors that affect children's capacity to give assent, including intellectual capacity, emotional development, life experience and cultural norms. Age was often mentioned as a consideration, but deemed an unreliable sole indicator of capacity to assent. In relation to appropriate assent processes, participants emphasised considerations such as supporting effective understanding and minimizing harms. Views on how to achieve these aims varied; for example, there were different ideas about the appropriate order in which to approach children and parents, and about whose decision to respect in the event of disagreement. CONCLUSIONS: Parents and children agreed about the value of involving children in decisions on research, and about the need to promote children's decision-making capacity while respecting parents' interests in children's welfare. Developing practical guidance that meets these principles is challenging, particularly given the need for flexible approaches that suit different study types, children's capacities and family environments. Further discussion within the Malawi research and ethics community will help develop contextually-appropriate guidelines.
Item Type: |
Article
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Additional Information: |
© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
Keywords: |
*Ethics, *decision making/es [ethics], Assent, Child, Consent, Malawi, Paediatric research, Research, Adolescent, Adult, Child, Child, Preschool, Developing Countries, Female, Focus Groups, Humans, Informed Consent, Informed Consent By Minors, Interviews as Topic, Malawi, Male, Middle Aged, Parents, Patient Selection, Proxy, Young Adult, Humans, Focus Groups, Parents, Patient Selection, Developing Countries, Informed Consent, Adolescent, Adult, Middle Aged, Child, Child, Preschool, Proxy, Malawi, Female, Male, Interviews as Topic, Young Adult, Informed Consent By Minors, 2201 Applied Ethics, Applied Ethics |
SGUL Research Institute / Research Centre: |
Academic Structure > Infection and Immunity Research Institute (INII) |
Journal or Publication Title: |
BMC Med Ethics |
ISSN: |
1472-6939 |
Language: |
eng |
Dates: |
Date | Event |
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14 May 2019 | Published | 22 April 2019 | Accepted |
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Publisher License: |
Creative Commons: Attribution 4.0 |
Projects: |
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PubMed ID: |
31088431 |
![](http://static.pubmed.gov/portal/portal3rc.fcgi/2745237/img/27842) |
Go to PubMed abstract |
URI: |
https://openaccess.sgul.ac.uk/id/eprint/112886 |
Publisher's version: |
https://doi.org/10.1186/s12910-019-0369-7 |
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