Cargando…

The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016

Social science generates evidence necessary to control epidemics. It can help to craft appropriate public health responses, develop solutions to the epidemic impacts and improve understanding of why the epidemic occurred. Yet, there are practical constraints in undertaking this international researc...

Descripción completa

Detalles Bibliográficos
Autores principales: Passos, Maria Joana, Matta, Gustavo, Lyra, Tereza Maciel, Moreira, Maria Elisabeth Lopes, Kuper, Hannah, Penn-Kekana, Loveday, Mendonça, Mila
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7213811/
https://www.ncbi.nlm.nih.gov/pubmed/32345582
http://dx.doi.org/10.1136/bmjgh-2020-002307
_version_ 1783531857661394944
author Passos, Maria Joana
Matta, Gustavo
Lyra, Tereza Maciel
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
Penn-Kekana, Loveday
Mendonça, Mila
author_facet Passos, Maria Joana
Matta, Gustavo
Lyra, Tereza Maciel
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
Penn-Kekana, Loveday
Mendonça, Mila
author_sort Passos, Maria Joana
collection PubMed
description Social science generates evidence necessary to control epidemics. It can help to craft appropriate public health responses, develop solutions to the epidemic impacts and improve understanding of why the epidemic occurred. Yet, there are practical constraints in undertaking this international research in a way that produces quality, ethical and appropriate data, and that values all voices and experiences, especially those of local researchers and research participants. In this paper, we reflected on the experience of undertaking social science research during the 2015/2016 Zika epidemic in Brazil. This experience was considered from the perspective of this paper’s authors: three Brazilian academics, two UK academics and two mothers of children affected by congenital Zika syndrome. This group came together through the conduct of the Social and Economic Impact of Zika study, a mixed-methods social science study. The key findings highlight practical issues in the achievement of three goals: the conduct of high-quality social science in emergencies and efforts towards the decolonisation of global health in terms of levelling the power between Brazilian and UK researchers and optimising the role of patients within research. From our perspective, the information collected through social science was valuable, providing detailed insight into the programmatic needs of mothers and their affected children (eg, economic and social support and mental health services). Social science was considered a low priority within the Zika epidemic despite its potential importance. There were logistical challenges in conducting social science research, foremost of which are the difficulties in developing a trusting and balanced power relationship between the UK and Brazilian researchers in a short time frame. When these issues were overcome, each partner brought unique qualities, making the research stronger. The mothers of affected children expressed dissatisfaction with research, as they were involved in many studies which were not coordinated, and from which they did not see a benefit. In conclusion, the importance of social science in epidemics must continue to be promoted by funders. Funders can also set in place mechanisms to help equalise the power dynamics between foreign and local researchers, researchers and participants, both to promote justice and to create best quality data.
format Online
Article
Text
id pubmed-7213811
institution National Center for Biotechnology Information
language English
publishDate 2020
publisher BMJ Publishing Group
record_format MEDLINE/PubMed
spelling pubmed-72138112020-05-14 The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016 Passos, Maria Joana Matta, Gustavo Lyra, Tereza Maciel Moreira, Maria Elisabeth Lopes Kuper, Hannah Penn-Kekana, Loveday Mendonça, Mila BMJ Glob Health Practice Social science generates evidence necessary to control epidemics. It can help to craft appropriate public health responses, develop solutions to the epidemic impacts and improve understanding of why the epidemic occurred. Yet, there are practical constraints in undertaking this international research in a way that produces quality, ethical and appropriate data, and that values all voices and experiences, especially those of local researchers and research participants. In this paper, we reflected on the experience of undertaking social science research during the 2015/2016 Zika epidemic in Brazil. This experience was considered from the perspective of this paper’s authors: three Brazilian academics, two UK academics and two mothers of children affected by congenital Zika syndrome. This group came together through the conduct of the Social and Economic Impact of Zika study, a mixed-methods social science study. The key findings highlight practical issues in the achievement of three goals: the conduct of high-quality social science in emergencies and efforts towards the decolonisation of global health in terms of levelling the power between Brazilian and UK researchers and optimising the role of patients within research. From our perspective, the information collected through social science was valuable, providing detailed insight into the programmatic needs of mothers and their affected children (eg, economic and social support and mental health services). Social science was considered a low priority within the Zika epidemic despite its potential importance. There were logistical challenges in conducting social science research, foremost of which are the difficulties in developing a trusting and balanced power relationship between the UK and Brazilian researchers in a short time frame. When these issues were overcome, each partner brought unique qualities, making the research stronger. The mothers of affected children expressed dissatisfaction with research, as they were involved in many studies which were not coordinated, and from which they did not see a benefit. In conclusion, the importance of social science in epidemics must continue to be promoted by funders. Funders can also set in place mechanisms to help equalise the power dynamics between foreign and local researchers, researchers and participants, both to promote justice and to create best quality data. BMJ Publishing Group 2020-04-27 /pmc/articles/PMC7213811/ /pubmed/32345582 http://dx.doi.org/10.1136/bmjgh-2020-002307 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Practice
Passos, Maria Joana
Matta, Gustavo
Lyra, Tereza Maciel
Moreira, Maria Elisabeth Lopes
Kuper, Hannah
Penn-Kekana, Loveday
Mendonça, Mila
The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title_full The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title_fullStr The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title_full_unstemmed The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title_short The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016
title_sort promise and pitfalls of social science research in an emergency: lessons from studying the zika epidemic in brazil, 2015–2016
topic Practice
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7213811/
https://www.ncbi.nlm.nih.gov/pubmed/32345582
http://dx.doi.org/10.1136/bmjgh-2020-002307
work_keys_str_mv AT passosmariajoana thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT mattagustavo thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT lyraterezamaciel thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT moreiramariaelisabethlopes thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT kuperhannah thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT pennkekanaloveday thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT mendoncamila thepromiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT passosmariajoana promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT mattagustavo promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT lyraterezamaciel promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT moreiramariaelisabethlopes promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT kuperhannah promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT pennkekanaloveday promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016
AT mendoncamila promiseandpitfallsofsocialscienceresearchinanemergencylessonsfromstudyingthezikaepidemicinbrazil20152016