Between empathy and anger: healthcare workers' perspectives on patient disengagement from antiretroviral treatment in Khayelitsha, Cape Town

BACKGROUND: The individual and public health benefits of antiretroviral treatment (ART) are undermined by suboptimal or poor engagement with care. Healthcare workers (HCW) attitudes and punitive treatment of patients have been repeatedly linked to poor engagement, but little is known about their perspectives or understanding of disengagement.
METHODS: We used qualitative methodology to explore HCWs' perspectives on ART disengagement, in Khayelitsha, an HIV-prevalent, peri-urban area in South Africa. HCWs were purposively recruited and included doctors, nurses, counsellors, social workers, data clerks, security guards, and allied health professionals. 30 semi-structured in-depth interviews were conducted. HCWs were asked to give examples of patients who interrupt treatment and how they feel when dealing with a patient who is returning to care. Transcripts were analysed using an inductive thematic analysis approach.
RESULTS: Findings from this study show that staff had contradictory feelings towards disengaged patients, experiencing both empathy and anger. Most staff were knowledgeable about the complexities of disengagement and highlighted potential barriers to sustaining adherence to ART, including mental health challenges and non-disclosure to family and partners. Empathy for patients who interrupted treatment was frequently reported when discussing potential barriers to engagement. However, many also expressed feelings of anger and frustration towards these patients, partly because of increased workload from additional medical and psychosocial support needs of patients. Some staff, particularly those taking chronic medication, perceived that patients who disengage from ART do not take adequate responsibility for their health.
CONCLUSIONS: Punitive HCW behaviour and negative attitudes can drive poor engagement and act as a barrier to re-engagement, undermining patients' willingness, and ability to sustain lifelong engagement with ART services. Whilst the extent of negative attitudes towards patients identified is highly concerning, the understanding of the challenges that patients face and the empathy HCWs express represents an important opportunity for service improvement. We propose implementing measures to promote non-judgmental patient-centered care and contribute to reducing incidences of disengagement. For example, a dedicated support mechanism for staff would help to reduce feelings of resentment or overburdened with work for patients requiring intense psychosocial and medical support.