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

Abstract

Background & objectives The benefits of long-term adherence to antiretroviral therapy (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 HCWs’ 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 with 30 HCWs in a primary care HIV clinic to explore their perspectives of patients who disengage from ART. HCWs interviewed included clinical (doctors and nurses) and support staff (counsellors, social workers, data clerks, security guards, and occupational therapists). The interview guide asked HCWs about their experience working with patients who interrupt treatment and return to care. Transcripts were audio-recorded, transcribed, and analysed using an inductive thematic analysis approach. Results Most participants were knowledgeable about the complexities of disengagement and barriers to sustaining engagement with ART, raising their concerns that disengagement poses a significant public health problem. Participants expressed empathy for patients who interrupted treatment, particularly when the challenges that led to their disengagement were considered reasonable by the HCWs. However, many also expressed feelings of anger and frustration towards these patients, partly because they reported an increase in workload as a result. Some staff, mainly those taking chronic medication themselves, perceived patients who disengage from ART as not taking adequate responsibility for their own health. Conclusion Lifelong engagement with HIV care is influenced by many factors including disclosure, family support, and HCW interactions. Findings from this study show that HCWs had contradictory feelings towards disengaged patients, experiencing both empathy and anger. Understanding this could contribute to the development of more nuanced interventions to support staff and encourage true person-centred care, to improve patient outcomes.

Supporting re-engagement with HIV services after treatment interruption in South Africa: a mixed method program evaluation of MSF’s Welcome Service

“…Addressing attitudes and behaviors may require more in-depth work and empathy training; incorporating these principles into medical curricula could be a valuable step forward 43 . A study exploring HCW attitudes among this population before the intervention showed HCWs had contradictory feelings of empathy and anger towards disengagement: HCWs felt frustrated about disorganized systems and high patient demand, which could be misdirected toward re-engaging patients, who may have more demanding clinical and psychosocial needs 15 . Despite system pressures potentially influencing full adoption of welcoming attitudes, specific elements of the program (perceived decreased waiting times, increased same-day ART, appreciation of counselling) were positively noted by HCWs.…”

“…During HCW interviews we explored their knowledge and understanding of the intervention principles, including their understanding and value of the various elements implemented, with a strong focus on exploring attitudes and behaviors toward patient disengagement from care, thereby aiming to evaluate the specific teachings in the person-centered care training. Design of topic guides was influenced by an evaluation of HCWs’ perceptions of disengagement amongst the same population conducted before the intervention 15 . Topic guides were pretested, using separate guides for HCWs and patients, and revisions were made after debriefing from pilot interviews.…”

“…This is further complicated by inefficient clinic systems, long waiting times, far travelling distances to access care, and stigmatizing healthcare workers’ (HCWs) attitudes, particularly towards those who have interrupted treatment 3 , 13 , 14 . Previous research shows HCWs, who function as gatekeepers and determine who receives care, can inadvertently provide care that proves to be stigmatizing, or viewed as “punishing” 3 , 15 . These negative attitudes and behaviors, in addition to uninviting, inefficient, and complex clinic systems, can deter patients from accessing treatment, further driving disengagement 3 , 15 – 17 .…”

“…Previous research shows HCWs, who function as gatekeepers and determine who receives care, can inadvertently provide care that proves to be stigmatizing, or viewed as “punishing” 3 , 15 . These negative attitudes and behaviors, in addition to uninviting, inefficient, and complex clinic systems, can deter patients from accessing treatment, further driving disengagement 3 , 15 – 17 . Few interventions have attempted to target friendliness and efficiency of HIV health services as strategies to improve the experience of re-engagement and promote long-term retention in care.…”

Effect of Behaviourally Informed Text Messages to Promote Retention in HIV Care: A Randomized Trial in Ekurhuleni District, South Africa

“…Clinic appointment attendance has emerged as a strong predictor for longer term retention of ART clients since missed appointments can lead to a reluctance to return to care and ultimately result in disengagement from HIV treatment (7–9). Beyond the risk of disengagement from ART, when care recipients are late for, or miss their scheduled appointments, this may place additional pressure on already constrained clinic staff to trace and bring clients back to care, negatively affecting the quality-of-service delivery (9–11).…”