REACH: Resilience, empowerment & advocacy in women’s and children’s health research
This long-term research collaboration, supported by the Wellcome Trust, brings together researchers in Kenya, South Africa, Thailand and the United Kingdom. The study aims to fill critical gaps in ethics guidance for responsible research with women, children and families in low-income settings by considering the ethical rationale and challenges of relying on research as a tool to respond to biomedical and social vulnerabilities.
Efforts surrounding the Millennium and Sustainable Development Goals have brought much needed attention to lessening the burden of disease shouldered by women and children, which is most severe in low-income countries. Lasting advances in women’s and children’s health will require improvement of health systems, environment, education, improved access to effective health interventions, including better ways to deliver care in rural, low-income settings. Innovations in each of these areas will require clinical, social science and implementation research.
However, many of these women and children are considered to be vulnerable to harms, coercion or exploitation, making inclusion in even potentially beneficial research ethically concerning. While significant strides have been made to develop research ethics guidance for those working with vulnerable populations, critical gaps remain in our understanding of specific vulnerabilities in context, accompanying agency for making choices and developing strategies in constrained situations, the role of social support in mitigating vulnerability, and individuals’ own perceptions of vulnerabilities and agency.
To address these gaps and to improve practical ethical support and guidance for responsible research with women, children and families, we will conduct an interdisciplinary collaborative study relying on an innovative mixed methods approach.
The REACH Study
REACH is an interdisciplinary, mixed-methods study with investigators in bioethics, maternal-child health, infectious disease and social science. Our collaborative team brings together experts in bioethics and maternal-child health, paediatrics, infectious disease, anthropology, health systems research, and social science research across three international sites in the Wellcome Trust Major Overseas Programmes: Kenya, South Africa and Thailand.
Our goal is to advance our understanding of specific vulnerabilities in context and from participants’ own perspectives, the capacity for resilience, the role of social support in mitigating vulnerabilities, strategies for empowering participants through research, and the role of research in building evidence-based interventions for vulnerable populations. The outcomes will help inform innovative, engaging, and ethically responsive approaches to research aimed at lessening the burden of disease shouldered by women and children living in extremely challenging social, economic, and political contexts. The image above shows the focus areas and local principal investigators across our four study locations.
The study aims to characterise the specific vulnerabilities and abilities of women and children from their own perspective using group discussion, interviews and where appropriate, participatory videography or photo-voice approaches. The study will also investigate how researchers, fieldworkers, ethics review committees and community advisory boards identify and respond to the potential vulnerabilities and abilities of women, children and families in research. Having reviewed and analysed the data from these two aims we will develop an evidence-based and conceptual ethical account of participant vulnerabilities to inform health research practice involving women, children, and families in low-resource settings.
Participants and research staff will be recruited from six ongoing studies in Kenya, Thailand and South Africa. All participants will be women children and families with specific groups including: severely malnourished children and their families; orphans and homeless young people; young people who are HIV-positive or at risk for HIV; children and young people with cognitive delay; pregnant women infected with malaria; and pregnant women who are refugees and/or from marginalised ethnic minorities. Data from the primary case studies will inform the development of a survey to a broader group of researchers, coordinators and fieldworkers in tropical medicine and maternal health networks. Analysis of this survey will allow comparative perceptions of resilience, empowerment and vulnerability between researchers and participants.
At the end of this study the qualitative and quantitative data collected alongside a rigorous conceptual analysis and review of current ethics guidance on vulnerability and agency will be used to inform effective strategies for mitigating vulnerability in research from design through to implementation. We hope that these outputs will empower and support researchers to design innovative and ethically responsible studies that seek to improve the lives of the most vulnerable women and children.