Social Scientist from Generation Malawi speaks to us
Hi Myness, can you tell me a little about your job and some of the challenges?
I am working on the Generation Malawi project, co-led by the Malawi Epidemiology and Intervention Research Unit (MEIRU). My job involves writing protocols, collecting and analyzing qualitative data, writing manuscripts, and disseminating findings both locally and internationally.
Some biomedical research projects are likely to impact the entire community rather than solely the research participant. It is therefore important to seek community consent in the study design, implementation and dissemination. Community engagement enhances the protection of research participants and non-research participants, minimizes risks, and enhances the benefit and legitimacy of research projects. Community engagement also attempts to prevent coercion and undue inducement on research participation. However, some studies have argued that community engagement alone is insufficient to empower research participants to make informed decisions due to some underlying structural and power inequalities. For instance, community leaders can use their power to influence members to consent to research - thereby compromising participant autonomy.
Generation Malawi is a prospective cohort study for mental and physical health, focused on families in the districts of Lilongwe and Karonga. The study requires strong and ongoing community engagement to ensure that research is designed and conducted in a manner that is acceptable to and shaped by communities and potential participants. This participatory method helps to connect researchers and communities, enabling dialogue, effective communication and constructive feedback. Collaborative linkages between researchers and communities facilitate sharing of a common goal of improving the health of people and the communities in which they live.
I am employing purposive sampling strategies in a series of qualitative focus group discussions (FGDs) and in-depth interviews (IDIs) with women, their spouses, other household members, health service providers and other key stakeholders at the Karonga and Lilongwe sites. FGDs and IDIs and FGDs are being conducted using a semi-structured interview guide, to allow flexibility and exploratory approach to data collection. This qualitative research is aimed at addressing the ethics of conducting research on maternal mental health in the context of Malawi, and at understanding the issues and perspectives of community members in relation to the collection of biological samples.
Collection of biological samples for a biobank can be a challenging task. Participants can be worried about the purpose of sample collection, for instance, and what samples will be used for. Rather than dismiss these concerns, or framing participants as passive research subjects, we want to create opportunities for communities to influence research objectives in order to participate actively in knowledge production.
I and colleagues will then use further IDIs and FGDs to explore how men and women conceptualize parental psychiatric disorder, its relationship with family life, and the availability of appropriate mental health support services. These methods will also seek to case light on community understandings of other long-term conditions, including how they are conceptualized, what people do in response to them, and how people living with such conditions are viewed and treated by the broader community.