Free love: A case study of church-run home-based caregivers in a high vulnerability setting

Root, Robin; Wyngaard, Arnau van

doi:10.1080/17441692.2011.581675

Cited by 15 publications

(11 citation statements)

References 20 publications

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“…Caregiving deepened some caregivers' faith: ‘Through this work our faith has really grown’ (Caregiver, 6 April 2011). These statements resonate with other scholars' findings that Christian love, empathy and devotion are crucial motivators in the midst of suffering (Klaits, ; Root & van Wyngaard, ; Vander Meulen, Patterson & Burchardt, ; Maes, ).…”

Section: Caregivers' Motivations and Experiencessupporting

confidence: 86%

“…All groups were situated in a complex and at times, contradictory religious atmosphere that could simultaneously exude love, judgement, acceptance, empathy, ignorance, knowledge and stigma toward PLHIV (Dilger, ; Pfeiffer, ; Becker & Geissler, ; Klaits, ; Root & van Wyngaard, ; Vander Meulen, Patterson & Burchardt, ; Smith, ; Maes, ). Care groups met openly in churches, many pastors discussed AIDS, and ‘the church is no longer afraid to give PLHIV positions because they think they will die soon’ (Isubilo Director, 9 March 2011; see Chikondi Director, 11 April 2011; Maes, ; World Vision, ).…”

Section: Methodsmentioning

confidence: 99%

“…As a result, volunteers may aid families in caregiving at home. AIDS care includes treating opportunistic infections like tuberculosis; supporting adherence to ART; counselling clients; performing household chores; giving nursing care; fostering food security; urging HIV testing; and caring for children (Mohammad & Gikonyo, : 8; WHO, ; Root & van Wyngaard, ). Donors, government officials and clients widely credit caregivers with saving the lives of PLHIV, a claim this paper does not dispute (WHO, ).…”

Section: Introductionmentioning

confidence: 99%

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Training Professionals and Eroding Relationships: Donors, Aids Care and Development in Urban Zambia

Patterson

2016

J of Intl Development

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Driven by the goal of sustaining programmes, donors that seek to combat AIDS have promoted trainings and income‐generating projects for volunteers who care for people living with HIV. This article uses focus group discussions, interviews and participant observation conducted in 2011 among urban Zambian churches to question the effects of these projects for ‘good care’ or relationships rooted in reciprocity, empathy and trust, values that scholars claim foster development capabilities. It compares two church AIDS care programmes with linkages to donors with two without such ties. It finds that all caregivers were motivated by perceived benefits from the ‘AIDS industry’ or the thousands of AIDS projects in Zambia. Groups with donor linkages were more professional, although their caregivers faced more time constraints and patronage expectations, factors that eroded empathy and trust and problematised building development capabilities. Copyright © 2016 John Wiley & Sons, Ltd.

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Section: Caregivers' Motivations and Experiencessupporting

confidence: 86%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Training Professionals and Eroding Relationships: Donors, Aids Care and Development in Urban Zambia

Patterson

2016

J of Intl Development

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“…The findings reported here are derived from a larger qualitative study of the sociocultural aspects of AIDS in Swaziland [33–35]. Because qualitative methods have been shown to be effective in investigating health in developing countries [36], a descriptive qualitative research design was deemed appropriate to a focused study of PLWHA experiences of CHBC in a rural resource-limited setting.…”

Section: Methodsmentioning

confidence: 99%

“…These variables in turn became the basis for designing the semi-structured questionnaire, which included 36 structured and 15 open-ended questions. The variables and questions were derived from the first author's previous and on-going investigation of social aspects of HIV and AIDS in Swaziland [33–35]. …”

Section: Methodsmentioning

confidence: 99%

A qualitative study of community home‐based care and antiretroviral adherence in Swaziland

Root

Whiteside

2013

Journal of the International AIDS Society

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IntroductionAntiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub-Saharan Africa and the importance of community home-based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients’ quality of life, tending to the needs of care supporters and achieving healthier populations.MethodsThis article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting.ResultsNinety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community.DiscussionGeneral inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter “talk” to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care “relationship” was itself the “intervention,” providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research.ConclusionsPLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients’ experiences of sickness, stigma and poverty, rendering them influential in individuals’ decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ...

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Dependent Agency in the Global Health Regime

Anderson¹,

Patterson²

2017

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During fieldwork at a Lusaka AIDS clinic in 2011, an elderly woman approached one of the authors, wanting to "tell her story" as a person living with HIV and AIDS (PLHIV). 1 The woman was poorly dressed and quite thin; she had come to the clinic to get her monthly supply of antiretroviral treatment (ART), drugs paid for by the US Emergency Plan for AIDS Relief (PEPFAR). Hearing people's personal stories was common during fieldwork, though these testimonials usually were given in the context of solicited interviews. And while some researchers paid "sitting fees" to hear such stories, this author did not. Because the author had several appointments, there was no time to meet with the woman. The author explained the situation and went to her meetings, assuming the woman would leave. At the end of the day, the woman was still at the clinic, sitting under a tree. She approached the researcher and asked for a ride to the city center. With several clinic officials watching the exchange, the author felt uncomfortable. She knew the traffic would be terrible, but she had spent the day interviewing people about the economic needs of PLHIV. Wouldn't it be hypocritical to not give this elderly woman a ride? And she felt guilty that the woman had waited all day, even though she was pretty sure that the woman had understood that there would be no interview. Ultimately, she gave the woman a ride and a 5,000 kwacha note. Only after the woman bounded from the car at the final destination did the author realize she had never even heard 1 We use the acronym PLHIV to stand for both the single and plural form, or person or people living with HIV. 2 the woman's story (Participant observation, PLHIV-author encounter, Lusaka, May 10, 2011). This participant observation highlights the broader themes of this volume: the various ways that individuals and communities respond to Africa's high dependency on donor health funds. We refer to these local actors as "dependent agents" and develop the concept of "dependent agency"-the condition in which these actors can simultaneously act and be dependent. Ask most people in the West about their impressions of Africa, and they will probably highlight the continent's perceived weakness and powerlessness in the international realm, its high rates of poverty and unemployment, and its deep dependence on foreign aid and commodity exports (Ayittey 1999; Englebert 2009). The continent is like the elderly woman in the Lusaka clinic: it has economic needs, some of which are met by external actors. Yet even within these broader structures of dependence, Africans show agency. They maneuver in "tight corners" in ways that demonstrate the capacity "to resist, and sometimes to deflect what appears to be their structural fate," with effects that are not inconsequential (Lonsdale 2000). For example, African states raise new issues at the United Nations, and some manipulate donors to gain material benefits or to avoid criticism of their authoritarian practices (Brown and Harman 2013). As an agent, the Zambian woman s...

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Free love: A case study of church-run home-based caregivers in a high vulnerability setting

Cited by 15 publications

References 20 publications

Training Professionals and Eroding Relationships: Donors, Aids Care and Development in Urban Zambia

Training Professionals and Eroding Relationships: Donors, Aids Care and Development in Urban Zambia

A qualitative study of community home‐based care and antiretroviral adherence in Swaziland

Dependent Agency in the Global Health Regime

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