Paper short abstract:

We draw on data from Malawi, Uganda and Zimbabwe to explore and reflect on the uncomfortable spaces created through the instrumentalization of lay health workers for the purpose of retaining and bringing women who default from Option B+ back into care.

Paper long abstract:

In the past four years, Malawi, Uganda and Zimbabwe, have adopted a universal 'test-and-treat' approach to the prevention of mother-to-child transmission of HIV (Option B+). Thousands of pregnant and breastfeeding women are routinely tested for HIV and immediately started on antiretroviral treatment for life after a positive diagnosis. Amongst this largely asymptomatic population, a relatively high number of HIV-positive women are not retained in care; they are labeled 'defaulters' or 'lost-to-follow-up' patients. These women give a range of reasons for not coming back to health facilities; often, they implicitly choose not to be traced by providing a false address at enrollment. Across rural and urban spaces, new strategies have sought to utilize lay health workers' liminal positionality -triangulated between the experience of living with HIV, belonging to local social ties, and being a caretaker- in order to track 'defaulters'. Many lay health workers, mostly women, are deployed for tracing, often without adequate guidance or training to protect confidentiality and respect patients' choice. Not being able to bring back a patient into care is perceived to be a professional failure and sometimes a loss of income. Lay health care workers need to develop individual strategies and pay their own way to track down 'defaulters' and bring them back into the system. We draw on data collected as part of a study looking at ART decentralization (Lablite) to reflect on the uncomfortable spaces created through the instrumentalization of lay health workers for the purpose of retaining and bringing patients back into care.