'I will not stop visiting!' a qualitative study of community health workers’ reluctance to withdraw household support following the end of a community-based intervention in Zimbabwe

Abstract Background Community Health Worker (CHW) programmes are increasingly important in HIV service delivery. CHWs’ familiarity with the local context can improve intervention acceptability and sustainability but concerns have been raised about potential exploitation and “burnout” of CHWs as they become emotionally involved in clients’ lives. Little attention has been paid to what happens at the end of time-limited CHW interventions. This study aimed to examine the experience of CHWs’ withdrawal from clients and their families. Methods We conducted a qualitative study of CHWs’ experiences of “exiting” from households during the ZENITH (Zimbabwe Study for Enhancing Testing and Improving Treatment of HIV in Children) intervention, which provided 12 structured home visits over 72 weeks to families with children recently diagnosed with HIV. We conducted semi-structured interviews at 12 and 18 months with all 19 CHWs delivering the intervention and 36 purposively selected caregivers who received home visits. Analysis focused on perceptions of the end of the trial, when CHWs completed the scheduled home-based visits and there was no guarantee of programme continuation beyond the study. Results Termination of scheduled home visits caused significant distress to both CHWs and the households they visited. We identify 3 thematic “lessons learned” for CHW programmes. First, CHWs derived pride and self-worth from emotional labour as they became integral to families’ improved ability to cope, motivating them to go beyond formal job requirements. Second, clients’ growing dependence on CHWs led to “exit” being interpreted as abandonment by both CHWs and households, causing distress on both sides. Finally, in response to anxiety about “abandoning” families, CHWs maintained contact with families long after scheduled withdrawal of services. Conclusions CHWs can forge genuine bonds with households, creating expectations of long-term engagement. On the positive side, CHW derive pride from their work, attach social responsibility to their roles, and feel personal fulfilment in supporting families. If CHWs do not disengage from interventions as planned, or become demoralised by “exits”, interventions will prove less sustainable. CHWs are often lauded for their ability to develop trust with peers, yet this willingness and ability to create enduring emotional bonds could threaten programme delivery.