The practice of community caregivers in a home‐based HIV/AIDS project in South Africa

Uys, Leana R.

doi:10.1046/j.1365-2702.2002.00566.x

Cited by 58 publications

(81 citation statements)

References 5 publications

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“…Home-based care aimed to shift burdens of care, particularly terminal care from the formal health system, to semi-formal agents of care in private, nongovernmental organisations and to house holds.With a few notable exceptions (Uys, 2002), the practice of home-based care implied delegating responsibility for death and dying to household members, generally women, who had to manage the difficult and deeply stressful process with little external support (Akintola,2006;Hunter, 2006). Couched in a language of a seamless ''continuum of care '' (WHO, 2002) between health system, community and home, and drawing on ''communitarian'' ideas of reciprocity and caring in African culture, it's more ''profane'' (Marais, 2005) or real role was to legitimate the widespread practice of turning people with end stage AIDS away from overburdened health facilities.…”

Section: Profile Of Lay Health Workers In the South African Health Symentioning

confidence: 99%

“…If the forms and training of lay workers outlined above have their roots in different ideological traditions and expectations, the practice of lay work tends to be complex, fluid and heterogenous, defying attempts to develop a one-size-fits-all package of services or mode of regulation (Daniels, Van Zyl, Clarke, Dick, & Johansson, 2005;Henderson, 2008;Uys, 2002). This is true in South Africa as much as elsewhere in the world.…”

Section: Policymentioning

confidence: 99%

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Lay health workers and HIV programmes: implications for health systems

2010

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One of the consequences of massive investment in antiretroviral access and other AIDS programmes has been the rapid emergence of large numbers of lay workers in the health systems of developing countries. In South Africa, government estimates are 65,000, mostly HIV/TB care-related lay workers contribute their labour in the public health sector, outnumbering the main front-line primary health care providers and professional nurses. The phenomenon has grown organically and incrementally, playing a wide variety of care-giving, support and advocacy roles. Using South Africa as a case, this paper discusses the different forms, traditions and contradictory orientations taken by lay health work and the system-wide effects of a large lay worker presence. As pressures to regularise and formalise the status of lay health workers grow, important questions are raised as to their place in health systems, and more broadly what they represent as a new intermediary layer between state and citizen. It argues for a research agenda that seeks to better characterise types of lay involvement in the health system, particularly in an era of antiretroviral therapy, and which takes a wider perspective on the meanings of this recent re-emergence of an old concept in health systems heavily affected by HIV/AIDS.

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Section: Profile Of Lay Health Workers In the South African Health Symentioning

confidence: 99%

Section: Policymentioning

confidence: 99%

Lay health workers and HIV programmes: implications for health systems

2010

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“…30 Grade 4 (n = 1): weak evidence Using a Likert rating scale of 1 = excellent to 5 = poor, a cross sectional evaluation of 52 patients accessing HIV home care found high patient satisfaction with care (mean score 1.6) and personal control over care (mean score 2.2), and with both communication (84.6% reporting a professional available to talk) and regularity of contact with staff (80.6% satisfied), though perceived health status remained unchanged. 31 Qualitative (n = 6) Qualitative data from patients receiving home based care reported patients particularly valuing information giving, support, welfare assistance, and specialist clinical intervention and referrals (focus group data, number unspecified) 32 as well as enhanced human dignity 33 (patient interviews, number unspecified). Patient interviews in other studies reported less disturbance of daily routine 34 (nine interviews) 35 (five interviews) fewer hospital visits and high satisfaction and quality of care 34 (nine interviews) 36 (265 interviews).…”

Section: Grade 3 (N = 7): Weaker Evidencementioning

confidence: 99%

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

Harding

Karus

Easterbrook

et al. 2005

Sexually Transmitted Infections

121

105

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Background:The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

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“…The impact of mortality due to HIV/AIDS has given rise to lower life expectancies, higher death rates, lower population and growth rates and more changes in the distribution of population by age and sex than expected. In sub-Saharan Africa alone, the epidemic has orphaned nearly 12 million children aged less than 18 years (Uys, 2002;UNAIDS, 2008).…”

Section: Introductionmentioning

confidence: 99%