Lessons Learned from Community Contact Tracing of Women Disengaged from an Urban Prevention of Mother-to-Child Transmission Program in Uganda

Abstract

Community tracing for disengaged pregnant and post-partum women with HIV(PPWH) shows promise, yet few studies detail the practical challenges of tracing, particularly in the Prevention of Mother-to-Child Transmission programs (PMTCT). Standard guidelines and evidence-based approaches remain lacking. We share lessons from our experiences in tracing disengaged PPWH in an urban PMTCT program in Uganda, where nurse counselors joined outreach teams to trace lost PPWH women via calls and home visits. The parent study was a prospective case–control study conducted in Uganda at six urban clinics. We integrated study nurse counsellors into the program’s outreach team to support the participant tracing activities. A team of outreach workers, including study nurse counsellors, traced the disengaged women through telephone calls and home visits. Experiences encountered and lessons learned by the nurse-counselors encompassed the following domains: non-disclosure, stigma, and cultural practices; sex of the tracer (outreach worker); client mobility; incorrect locator information; community-specific names; deregistration of phone lines; and non-disclosure of exposure status in infants whose mother had died. Experienced outreach workers should complete locator forms, multiple phone number should be collected and those of trusted confidents should be identified, psychosocial issues should be addressed early, outreach team members should come from the local community, locator information should be kept up to date, an electronic system with the capacity to store GPS coordinates should be considered, gender match tracers to the client, local protocols should be developed for the disclosure of exposure status for infants whose mothers have died. Attrition from PMTCT programmes remains a major barrier to eliminating paediatric HIV, and there's alack of standardised, evidence-based guidelines for tracing women who disengage. This paper off erspractical insights from community-based contact tracing of disengaged pregnant and postpartumwomen with HIV in urban Uganda, highlighting challenges such as stigma, gender dynamics, clientmobility, and data gaps. It also shares adaptive strategies used by nurse counsellors and outreachworkers, providing a framework for eff ective tracing protocols. These lessons are fundamental tostrengthening PMTCT, improving outcomes for women and infants, and supporting global eff ortstowards an AIDS-free generation.