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

Medicine and Health

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

T. Nhemachena, C. Späth, et al.

Explore the complex landscape of healthcare workers' feelings toward patient disengagement from antiretroviral therapy in South Africa, as uncovered in this insightful study by Tsephiso Nhemachena and colleagues. This research reveals the emotional turmoil and challenges faced by healthcare providers in a critical public health issue.

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Playback language: English
Introduction
The global HIV epidemic, while significantly reduced due to advancements in prevention and treatment, remains a significant public health challenge. South Africa, with the world's largest ART program, faces the obstacle of patient disengagement from ART, hindering progress towards UNAIDS 95-95-95 targets. Disengagement leads to adverse health outcomes for individuals and increased strain on the healthcare system. While numerous factors contribute to disengagement (stigma, mental health, non-disclosure, access to care), limited research exists on HCWs' perspectives. Understanding HCWs' experiences is crucial for designing effective interventions to improve patient engagement. This study aims to explore HCWs' perceptions of patients who disengage from ART in Khayelitsha, a high-HIV-prevalence area in South Africa, to inform the development of a support intervention.
Literature Review
Existing literature highlights various patient-level factors contributing to ART disengagement, including stigma, mental health issues, non-disclosure, and poor access to healthcare. Studies emphasize the negative impact of HCWs' attitudes on patient re-engagement. However, there's a dearth of research exploring HCWs' perspectives, which limits our understanding of how to best manage disengagement. Previous research indicates a strong correlation between patient adherence and factors such as mental health, disclosure of HIV status, and the support system available to the patient. This study addresses this gap by investigating HCWs' perceptions to inform strategies aimed at improving patient retention and adherence.
Methodology
This descriptive qualitative study employed in-depth interviews (IDIs) with 30 HCWs at Ubuntu Clinic in Khayelitsha. Participants included clinical (doctors, nurses) and support staff (counsellors, social workers, etc.). Purposive sampling was used to select HCWs who had worked at the clinic for over three months. Semi-structured interviews, lasting 45-60 minutes, explored HCWs' experiences with patients interrupting and returning to ART. Interviews were conducted primarily in English, with isiXhosa used when necessary, and translated manually during transcription. Data were analyzed using an inductive thematic analysis approach, following Braun and Clarke's six phases, and utilizing NVivo 12 Pro. The study received ethical approval from the University of Cape Town and Médecins Sans Frontières Ethics Review Board. All participants provided written informed consent.
Key Findings
Three major themes emerged from the data: 1) Disengagement from HIV care is a public health problem requiring attention. HCWs identified several adverse consequences, including increased hospitalizations, development of drug resistance, and a perceived "second wave" of the epidemic due to treatment interruptions. 2) HCWs express empathy and understanding for patients' disengagement. They recognized justifiable reasons, such as mental health challenges, non-disclosure difficulties, and the complex interplay of social and personal circumstances. They expressed concern for patients' well-being and willingness to provide support. 3) HCWs express anger and frustration towards patients who disengage. HCWs felt patients weren't taking responsibility for their health, leading to increased workload and frustration. They viewed some reasons for disengagement (e.g., travel, pill burden) as unjustifiable. Interestingly, HCWs taking chronic medication themselves were more likely to express such sentiments. The study found a tension between empathy and anger. While HCWs understood the complexities, the feeling of patients not prioritizing their health fueled negative emotions.
Discussion
This study reveals a significant internal conflict within HCWs, grappling with both empathy and anger towards patients who disengage from ART. The findings highlight that HCWs understand the complex factors influencing adherence but struggle with a perceived lack of patient responsibility. This conflict mirrors previous research emphasizing the importance of patient-centered care, which recognizes the holistic needs of patients beyond just their health status. HCWs felt a responsibility to educate and support, but ultimately viewed patient adherence as a personal responsibility. The study's findings suggest a need to shift towards a more person-centered approach to address both patient and HCW needs. Addressing the HCWs' anger and frustration, while simultaneously fostering empathy, is crucial for creating a supportive environment that encourages patient engagement.
Conclusion
This study provides valuable insights into the complex emotional landscape experienced by HCWs dealing with patient disengagement from ART. The contradictory feelings of empathy and anger highlight the need for interventions that support both patients and HCWs. Future interventions should focus on providing psychosocial support for HCWs, equipping them with stress management skills and strategies to address negative attitudes. Furthermore, promoting person-centered care, alongside addressing systemic challenges in the healthcare system, is crucial for improving long-term ART engagement.
Limitations
The study's limitations include its single-site setting (Ubuntu Clinic), potentially limiting generalizability to other contexts. The study didn't directly observe HCW-patient interactions, limiting insights into how these emotions play out in practice. Future research should explore the diverse perspectives of different HCW groups and examine the impact of HCWs' perceptions on patient experiences.
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