Journal Article > ResearchFull Text
BMC Prim Care. 2023 January 26; Volume 24 (Issue 1); 34.; DOI:10.1186/s12875-022-01957-8
Nhemachena T, Späth C, Arendse KD, Lebelo K, Zokufa N, et al.
BMC Prim Care. 2023 January 26; Volume 24 (Issue 1); 34.; DOI:10.1186/s12875-022-01957-8
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.
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.
Journal Article > ResearchFull Text
Sci Rep. 2024 March 27; Volume 14 (Issue 1); 7317.; DOI:10.1038/s41598-024-57774-9
Arendse KD, Walker C, Pfaff C, Lebelo K, Cassidy T, et al.
Sci Rep. 2024 March 27; Volume 14 (Issue 1); 7317.; DOI:10.1038/s41598-024-57774-9
Psychosocial challenges impact patients’ ability to remain on antiretroviral therapy lifelong, magnified by disorganized health-systems and healthcare worker (HCW) attitudes. To address this, Médecins Sans Frontières and the Department of Health developed the Welcome Service intervention, to provide person-centered care at re-engagement after HIV treatment interruption. Implemented in Khayelitsha, South Africa, between August 2020 and February 2021, the intervention aimed to reorganize triage, optimize clinical and counselling services and address HCW attitudes. The study used a mixed-methods design, incorporating in-depth interviews, and analyses of programmatic and routine health data. Interviews demonstrated positive patient care experiences. HCWs understood the potential impact of attitudes on patient engagement, however, some continued to demonstrate judgmental attitude. Clinical objectives were variably met at re-engagement: 98% were re-initiated the same day, 50% had a CD4 done, and 45% received tuberculosis prevention. Nevertheless, 4-month retention was 66%, and 88% had a VL < 1000 c/mL. Despite HCWs’ understanding of person-centered care not translating into supportive behaviors, patients had positive care experiences and the intervention ended with a high rate of VL suppression. More efforts are needed to design interventions building on Welcome Service principles to provide person-centered care and sustain retention after re-engagement.
Journal Article > ResearchAbstract Only
AIDS. 2022 November 24; Volume 37 (Issue 3); 513-522.; DOI:10.1097/QAD.0000000000003442
Patten GE, Euvrard J, Anderegg N, Boulle AM, Arendse KD, et al.
AIDS. 2022 November 24; Volume 37 (Issue 3); 513-522.; DOI:10.1097/QAD.0000000000003442
OBJECTIVE
Despite improved access to antiretroviral therapy (ART) for people with HIV (PWH), HIV continues to contribute considerably to morbidity and mortality. Increasingly, advanced HIV disease (AHD) is found among PWH who are ART-experienced.
DESIGN
Using a multi-state model we examined associations between engagement with care and AHD on ART in South Africa.
METHODS
Using data from IeDEA Southern Africa, we included PWH from South Africa, initiating ART from 2004 to 2017 aged more than 5 years with a CD4+ cell count at ART start and at least one subsequent measure. We defined a gap as no visit for at least 18 months. Five states were defined: ‘AHD on ART’ (CD4+ cell count <200 cells/μl), ‘Clinically Stable on ART’ (CD4+ cell count ≥200 or if no CD4+ cell count, viral load <1000 copies/ml), ‘Early Gap’ (commencing ≤18 months from ART start), ‘Late Gap’ (commencing >18 months from ART start) and ‘Death’.
RESULTS
Among 32 452 PWH, men and those aged 15–25 years were more likely to progress to unfavourable states. Later years of ART start were associated with a lower probability of transitioning from AHD to clinically stable, increasing the risk of death following AHD. In stratified analyses, those starting ART with AHD in later years were more likely to re-engage in care with AHD following a gap and to die following AHD on ART.
CONCLUSION
In more recent years, those with AHD on ART were more likely to die, and AHD at re-engagement in care increased. To further reduce HIV-related mortality, efforts to address the challenges facing these more vulnerable patients are needed.
Despite improved access to antiretroviral therapy (ART) for people with HIV (PWH), HIV continues to contribute considerably to morbidity and mortality. Increasingly, advanced HIV disease (AHD) is found among PWH who are ART-experienced.
DESIGN
Using a multi-state model we examined associations between engagement with care and AHD on ART in South Africa.
METHODS
Using data from IeDEA Southern Africa, we included PWH from South Africa, initiating ART from 2004 to 2017 aged more than 5 years with a CD4+ cell count at ART start and at least one subsequent measure. We defined a gap as no visit for at least 18 months. Five states were defined: ‘AHD on ART’ (CD4+ cell count <200 cells/μl), ‘Clinically Stable on ART’ (CD4+ cell count ≥200 or if no CD4+ cell count, viral load <1000 copies/ml), ‘Early Gap’ (commencing ≤18 months from ART start), ‘Late Gap’ (commencing >18 months from ART start) and ‘Death’.
RESULTS
Among 32 452 PWH, men and those aged 15–25 years were more likely to progress to unfavourable states. Later years of ART start were associated with a lower probability of transitioning from AHD to clinically stable, increasing the risk of death following AHD. In stratified analyses, those starting ART with AHD in later years were more likely to re-engage in care with AHD following a gap and to die following AHD on ART.
CONCLUSION
In more recent years, those with AHD on ART were more likely to die, and AHD at re-engagement in care increased. To further reduce HIV-related mortality, efforts to address the challenges facing these more vulnerable patients are needed.