Between empathy and anger: healthcare workers' perspectives on patient disengagement from antiretroviral treatment in Khayelitsha, South Africa -a qualitative study

Background & objectives The benefits of long-term adherence to antiretroviral therapy (ART) are undermined by interruptions in care or disengagement. Healthcare workers (HCWs) influence patient engagement, yet little is known about HCWs’ perspectives on disengagement. This study explored HCWs’ perspectives on ART disengagement in Khayelitsha, South Africa. Method Semi-structured interviews were conducted with 30 HCWs (clinicians and support staff) at a primary care HIV clinic. Interviews explored experiences with patients who interrupt treatment and return to care. Audio-recorded interviews were transcribed and analysed using inductive thematic analysis. Results Participants recognised disengagement as a significant public health problem and articulated its complexities and barriers, including stigma, mental health challenges, and non-disclosure. HCWs expressed empathy for patients when challenges seemed reasonable (e.g., depression, difficulties with disclosure), but many also reported anger and frustration, citing increased workload and perceptions that some patients do not take responsibility for their health. Conclusion Lifelong engagement in HIV care is shaped by multiple factors, including disclosure, family support, and HCW interactions. HCWs’ contradictory feelings of empathy and anger highlight the need for nuanced, person-centred interventions that support both patients and HCWs to improve retention and outcomes.

Tsephiso Nhemachena, Carmen Späth, Kirsten D Arendse, Keitumetse Lebelo, Nompumelelo Zokufa, Tali Cassidy, Katherine Whitehouse, Claire M Keene, Alison Swartz