Participatory approaches to research, such as Participatory Action Research and Community-Based Participatory Research, recommend partnering with local communities from the outset of a study.The aim of participatory approaches is to build knowledge around topics that honor and reflect the experiences, expertise, and perspectives of the people most directly impacted by issues in their communities. This type of research involves partnering with research participants so that they can be actively involved in decision-making and ownership of the research.
Participatory approaches can be particularly beneficial for research involving potentially vulnerable groups because they recognize the lived experiences of participants and can help empower them in the process of shaping research processes and outcomes.1,2 For instance, centering the perspectives and experiences of vulnerable groups who have just experienced a disaster can provide an insider perspective of the disaster that does not misunderstand or misrepresent their experiences. This can also help to ensure that one’s research does not further contribute to or exacerbate historically-rooted inequalities or stigmas faced by such groups.
CDC’s Population Connectivity Across Borders
Population Connectivity Across Borders, or “PopCAB,” assessments have become a key feature of the Center for Disease Control and Prevention’s (CDC’s) Ebola response in sub-Saharan Africa as part of the Global Border Health Team. Using PopCAB assessments, CDC responders collaborate with local leaders, stakeholders, and community health workers to create population mobility maps, focusing especially on international border movement. By leveraging discussions and focus groups with locals to understand migration and movement into, through, and out of their own communities, PopCAB offers a participatory-based approach to predicting where Ebola could spread within the region.3
It is important to note, however, that there are certain challenges to utilizing participatory approaches. For instance, hazards and disaster researchers often experience a unique pressure and urgency to begin their research as soon as an event occurs. While using a participatory approach could help to bring marginalized community members in conversation with relevant stakeholders, the unpredictable and unstable context of disaster settings can complicate this process, as members in these groups may be displaced from their homes and thus be difficult to engage. Moreover, disasters can have negative psychological and emotional impacts on community members. Similar to issues of informed consent, individuals may feel a sense of pressure and urgency to participate in the research, which can exacerbate psychological distress.1
1.Hamideh S. Opportunities and challenges of public participation in post-disaster recovery planning: Lessons from Galveston, TX. Natural Hazards Review. 2020;21(4):05020009-05020009. doi:10.1061/(ASCE)NH.1527-6996.0000399
2.Gibbs L, Block K, MacDougall C, et al. Ethical use and impact of participatory approaches to research in post-disaster environments: An Australian Bushfire case study. BioMed Research International. 2018;2018. doi:10.1155/2018/5621609
3.Nakiire L, Mwanja H, Pillai SK, et al. Population movement patterns among the Democratic Republic of the Congo, Rwanda, and Uganda during an outbreak of ebola virus disease: Results from community engagement in two districts — Uganda, March 2019. MMWR Morb Mortal Wkly Rep. Published online 2020:10-13. doi:10.15585/mmwr.mm6901a3