Obligation to family during times of transition: care, support and the response to HIV and AIDS in rural South Africa

Knight, Lucia; Hosegood, Victoria; Timæus, IM

doi:10.1080/09540121.2016.1195486

Cited by 22 publications

(18 citation statements)

References 68 publications

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“…In contexts of high fluidity, it is the granular adaptability of health services to client needs that enables care continuity. The paper contributes to a growing body of literature that aims to develop a more nuanced conceptualization of household fluidity in the context of HIV . This manuscript is about understanding the inherent fluidity in the lives of people living in the highest HIV prevalence region of the world and how this fluidity intersects with their engagements with HIV services.…”

Section: Discussionmentioning

confidence: 99%

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

et al. 2018

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IntroductionPopulation distributions, family and household compositions, and people's sense of belonging and social stability in southern Africa have been shaped by tumultuous, continuing large‐scale historical disruptions. As a result, many people experience high levels of geographic and social fluidity, which intersect with individual and population‐level migration patterns. We describe the complexities of household fluidity and HIV service access in South Africa and Zambia to explore implications for health systems and service delivery in contexts of high household fluidity.MethodsHPTN 071 (PopART) is a three‐arm cluster randomized controlled trial implemented in 21 peri‐urban study communities in Zambia and South Africa between 2013 and 2018. A qualitative cohort nested in the trial included 148 purposively sampled households. Data collection was informed by ethnographic and participatory research principles. The analysis process was reflexive and findings are descriptive narrative summaries of emergent ideas.ResultsHouseholds in southern Africa are extremely fluid, with people having a tenuous sense of security in their social networks. This fluidity intersects with high individual and population mobility. To characterize fluidity, we describe thematic patterns of household membership and residence. We also identify reasons people give for moving around and shifting social ties, including economic survival, fostering interpersonal relationships, participating in cultural, traditional, religious, or familial gatherings, being institutionalized, and maintaining patterns of substance use. High fluidity disrupted HIV service access for some participants. Despite these challenges, many participants were able to regularly access HIV testing services and participants living with HIV were especially resourceful in maintaining continuity of antiretroviral therapy (ART). We identify three key features of health service interactions that facilitated care continuity: disclosure to family members, understanding attitudes among health services staff including flexibility to accommodate clients’ transient pressures, and participants’ agency in ART‐related decisions.ConclusionsChoices made to manage one's experiential sense of household fluidity are intentional responses to livelihood and social support constraints. To enhance retention in care for people living with HIV, policy makers and service providers should focus on creating responsive, flexible health service delivery systems designed to accommodate many shifts in client circumstances.

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Section: Discussionmentioning

confidence: 99%

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

et al. 2018

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“…It is not clear how context-specific associations between social connectedness and cognitive health might be. Although norms of caregiving and mutual reciprocity beyond immediate relations are fluid in many LMICs, they often remain stronger than in higher-income settings ( Knight et al, 2016 ; Ugargol and Bailey, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

Social contact, social support, and cognitive health in a population-based study of middle-aged and older men and women in rural South Africa

Harling

Kobayashi

Farrell

et al. 2020

Social Science & Medicine

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Background Several theories seek to explain how social connections and cognitive function are interconnected in older age. These include that social interaction protects against cognitive decline, that cognitive decline leads to shedding of social connections and that cognitive decline leads to increased instrumental support. We investigated how patterns of social contact, social support and cognitive health in rural South Africa fit with these three theories. Method We used data from the baseline of “Health and Aging in Africa: a Longitudinal Study of an INDEPTH community in South Africa” (HAALSI), a population-based study of 5059 individuals aged ≥ 40 years. We evaluated how a range of egocentric social connectedness measures varied by respondents' cognitive function. Results We found that respondents with lower cognitive function had smaller, denser social networks that were more local and more kin-based than their peers. Lower cognitive function was associated with receipt of less social support generally, but this difference was stronger for emotional and informational support than for financial and physical support. Impairment was associated with greater differences among those aged 40–59 and those with any (versus no) educational attainment. Conclusions The patterns we found suggest that cognitively impaired older adults in this setting rely on their core social networks for support, and that theories relating to social connectedness and cognitive function developed in higher-income and higher-education settings may also apply in lower-resource settings elsewhere.

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“…They say little about how patterns of care responsibilities come about, and how they are bargained and negotiated between different family members. Research on other aspects of care-giving demonstrates the value of more contextualised and nuanced analysis (Knight, Hosegood, & Timaeus, 2016). Social science research has revealed important insights about gendered aspects of care-giving in LMICs, particularly with reference to childcare or care for adults with HIV/AIDS (Razavi, 2011; UN Research Institute for Social Development [UNRISD], 2016).…”

Section: Introductionmentioning

confidence: 99%

“…In countries like Mexico and Peru, accelerated population ageing is leading to a growing prevalence of old age care dependency (Jackson, Strauss, & Howe, 2009;Rossel, 2016). Across Latin America as a whole, as well as most other low and middle income countries (LMICs), formal care services for dependent older people remain limited and so the responsibility for care-giving falls almost exclusively on family carers (Bernabe-Ortiz, Diez-Canseco, Vásquez, & Miranda, 2016;Camarano & Leitão e Mello, 2010; Economic Commission for Latin America and the Caribbean [ECLAC], 2012;Flores-Castillo, 2012).…”

Section: Introductionmentioning

confidence: 99%

Allocating Family Responsibilities for Dependent Older People in Mexico and Peru

Lloyd‐Sherlock

Mayston

Acosta

et al. 2017

The Journal of Development Studies

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This paper applies different analytical frameworks to explore processes of family bargaining about providing care for dependent older people in Mexico and Peru. These frameworks include cultural norms, life course effects and material exchange. The paper is based on 19 in-depth qualitative family case studies, which are linked to a wider set of quantitative survey data. Care arrangements and bargaining processes are revealed to be highly gendered, and largely conform to prevailing cultural norms. Rather than neutral and objective, the selfidentified role as main carer is found to be subjective and potentially ambiguous. The few men who self-identify as main carers are more likely to play an indirect, organisational role than engage directly in daily care. As such, bargaining mainly relates to which woman performs the main care role, and large family networks mean that there is usually more than one candidate carer. Bargaining can occur inter-generationally and conjugally, but bargaining between siblings is of particular importance. Bargaining is framed by the uncertain trajectory of older people's care needs, and arrangements are sometimes reconfigured in response to changing care needs or family circumstances. Taking the narratives at face value, the influence of life course effects on bargaining and care arrangements is more obvious than material exchange. There are, however, indications that economic considerations, particularly inheritance, still play an important behind the scenes role.

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Obligation to family during times of transition: care, support and the response to HIV and AIDS in rural South Africa

Cited by 22 publications

References 68 publications

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

Households, fluidity, and HIV service delivery in Zambia and South Africa – an exploratory analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial

Social contact, social support, and cognitive health in a population-based study of middle-aged and older men and women in rural South Africa

Allocating Family Responsibilities for Dependent Older People in Mexico and Peru

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