Community Engagement to Explore Mothering and Infant Feeding Practices Among Black Women Living With HIV

Background: Women of childbearing age account for nearly half of the world's HIV cases. Black women are disproportionately affected. Evidence indicates that breastfeeding presents a 20% risk of HIV transmission to infants. Hence the World Health Organization recommended that the standard of care among HIV-positive women of childbearing age by 2015 should include antiretroviral therapy with exclusive formula feeding where feasible to eliminate 90% of new HIV infections among children, and keep HIV-positive mothers healthy. Black women including those in the diaspora share similar socio-cultural perceptions of motherhood, vulnerability to HIV infection through heterosexual contact, and socio-economic barriers to needed health and social services. The perspectives of women of African descent may influence public health outcomes including mother-to-child HIV transmission among this population. Arguably, any investigation of these perspectives, particularly in diverse settings, would best be served using a mixed method research approach. However, the dynamics of community engagement where study participants live and work would impinge on the validity and generalisation of the findings, and the acceptability of recommendations that emanate from such a study. This ultimately has implications on any impact the study would have on policy and practice regarding provision of care to mothers living with HIV.

Purpose: We present the process of meaningfully engaging Black women in three sites/cities; Ottawa, Canada, Port Harcourt, Nigeria and Miami, USA where there are complex intersections of socio-cultural, socio-economic, ethno-racial, and public health contexts associated with being Black, HIV-positive, childbearing, and confronted with infant feeding choices, practices, and experiences. We discuss the community based participatory processes being used to keep community members actively involved in all phases of the project and to generate data that is well-grounded in the realities of the women.

Research Design: We use a multi-phase, multi-site, mixed methods research approach that is guided by the tenets of community-based participatory research (CBPR) and post-colonialism. Community engagement and participation are integrated throughout the research and includes the formation of advisory groups, consultation meetings, and data analysis.

Discussion and Implications: We expect this multi-method, multi-site research to generate knowledge to improve cultural competency among service providers, and to develop tailored interventions to reduce HIV-related stigma and health inequities. The community-based participatory mechanisms of the study will ensure the use of effective and acceptable means of collecting relevant and valid information; enhance the clinical relevance and cultural suitability of proposed interventions; and promote the sustainability of policy and health actions that will empower Black women and their communities to be self-advocates in the fight against HIV/AIDS.