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 treatment (ART) are countered by interruptions in care or disengagement from care. Healthcare workers (HCWs) play an important role in patient engagement and negative or authoritarian attitudes can drive patients to disengage. However, little is known about HCW perspectives on disengagement. We explored HCWs’ perspectives on ART disengagement in Khayelitsha, a peri-urban area in South Africa with a high HIV burden. Method Semi-structured interviews were conducted in English with 30 HCWs in a primary care HIV clinic to explore their perspectives of patients who disengage from ART. Participants included doctors, nurses, counsellors, social workers, data clerks, security guards, and allied health professionals. The interview guide included questions that asked HCWs to give examples of patients who interrupt treatment, their perceptions of people who disengage from care and their feelings when dealing with a patient who is returning to care. All transcripts were audio-recorded, transcribed, and analysed using an inductive thematic analysis approach. Results Most staff were knowledgeable about the complexities of disengagement and highlighted potential barriers to sustaining adherence on ART, including mental health challenges and non-disclosure to family and partners. Participants expressed empathy for patients who interrupted treatment, particularly when discussing potential barriers to continued engagement in care. However, many also expressed feelings of anger and frustration towards these patients, partly because they reported these patients increase workload. Some staff, mainly those taking chronic medication themselves, perceived that patient who disengage from ART do not take adequate responsibility for their health. Conclusion Lifelong engagement with HIV care is influenced by many factors, including HCW interactions. Findings from this study show that staff had contradictory feelings towards disengaged patients, experiencing both empathy and anger. This understanding could contribute to the development of more nuanced interventions to support staff and encourage true person-centred care, to improve patient outcomes.