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. 2017 Oct 17;59(3):e223–e240. doi: 10.1093/geront/gnx159

Aging and HIV-Related Caregiving in Sub-Saharan Africa: A Social Ecological Approach

Jeon Small 1,✉, Carolyn Aldwin 2, Paul Kowal 3,4, Somnath Chatterji 5
PMCID: PMC6524476  PMID: 29045750

Abstract

Background and Objectives

We reviewed the literature on older adults (OAs) who are caring for persons living with HIV/AIDS in sub-Saharan Africa (SSA), with the goal of adapting models of caregiver stress and coping to include culturally relevant and contextually appropriate factors specific to SSA, drawing on both life course and cultural capital theories.

Research Design and Methods

A systematic literature search found 81 articles published between 1975 and 2016 which were reviewed using a narrative approach. Primary sources of articles included electronic databases and relevant WHO websites.

Results

The main challenge of caregiving in SSA reflects significant financial constraints, specifically the lack of necessities such as food security, clean water, and access to health care. Caregiving is further complicated in SSA by serial bouts of caring for multiple individuals, including adult children and grandchildren, in the context of high levels of stigma associated with HIV. Factors promoting caregiver resilience included spirituality, bidirectional (reciprocal) caregiving, and collective coping strategies.

Discussion and Implications

The creation of a theoretical model of caregiving which focuses more broadly on the sociocultural context of caregiving could lead to new ways of developing interventions in low-resources communities.

Keywords: Caregiving, International issues, Stress and coping

The confluence of population aging and the HIV/AIDS epidemic in sub-Saharan Africa (SSA) has resulted in a wide range of psychosocial and health impacts that are not fully understood (AVERT, 2015). SSA accounts for 70% of all cases of people living with HIV/AIDS (PLWHA), with prevalence ranging widely across the different countries in the region (UNAIDS, 2015). HIV/AIDS has eroded the working capacity of communities, and affected needed financial and material support to survive (Kang'ethe, 2012; Knodel, Watkins, & VanLandingham, 2002). Thus, many older adults (OAs; 50+) have been forced into primary caregiving roles as younger adults, who would normally provide support to aging parents and their children, died from HIV/AIDS (Mathambo & Gibbs, 2009).

Given the contextual nature of older adult (OA) care giving in SSA to PLWHA, it is important to understand the role of context (aging, HIV/AIDS, war, poverty) in the development of effective interventions. In SSA as elsewhere, care is shaped by the culture which informs the dimensions of “good” care, culture-specific approaches to symptoms and illness, and bereavement (Gysels, Pell, Straus, & Pool, 2011).

It is critical to address resource deficits for PLWHA and surviving orphans, including lack of basic infrastructure, food insecurity, and poor record keeping (Njororai & Njororai, 2013; Oppong, 2006). Unemployment and industrialization may also play a critical role in the recruitment of OA caregivers, as these forces often lead to urban migration and high prevalence of HIV/AIDS which, in turn, resulted in the creation of orphans and vulnerable children (OVC; Dolbin-MacNab & Yancura, 2017). Patriarchy and the marginalization of women exacerbates care deficits (Schatz & Seeley, 2015). Women, and increasingly OA women, provide most of the informal care in SSA. The emergence of male caregivers who provide both instrumental (financial) and nursing care is reflective of a larger demographic shift related to the feminization of labor in urban centers and the lack of employment for men (Block, 2016; Block, 2014).

The main goal of this review article is to extend sociocultural models of stress and coping to a true multilevel model which incorporates the impact of the larger historical context on social institutions, which in turn affect individual level stress and coping practices. We will do this through focusing on the impact of cultural resources on caregiver wellbeing in OAs providing care to persons with HIV/AIDS.

Sociocultural Models of Stress and Coping

Sociocultural values are important for the caregiving process (Pearlin, Mullan, Semple, & Skaff, 1990). Using Hispanic American caregivers as exemplars, Aranda and Knight (1997) defined culture in terms of a bipolar dimension of individualism and familism. They hypothesized that individuals adhering to individualism would report higher levels of caregiving burden because the provision of care would interfere with the caregiver’s autonomy, whereas those adhering to familism would report lower levels. Surprisingly, this was not supported by their data. Knight and Sayegh (2010) recommended that additional research on ethnic differences in caregiving needed to explore a range of finer-grained dimensions of cultural values that are associated with both positive and negative effects on caregiver health outcomes. Aldwin (2007) suggested that cultural values influence coping resources, including social support and coping strategies, as well as the cognitive appraisal of burden, which might prove to be a fruitful avenue for expanding the model.

Following Knight and Sayegh’s (2010) recommendations, we expanded their stress and coping model (see Figure 1). (Knight and Sayegh’s original model is highlighted by a gray background.) The model consists of three levels: the sociohistorical, the intermediate, and the individual contexts. We drew on life course theory (Elder & George, 2016), which posits that individuals’ developmental paths are embedded in and transformed by local and global contexts and events that occur in the historical period and geographical location in which they live. In our model, the sociohistorical level is represented by the current confluence of population aging and the HIV epidemic. In SSA, the role of OA has been transformed in part because the HIV/AIDS epidemic has resulted in over a million deaths among working age adults (15–49), creating a “missing generation” (AVERT, 2015).

Figure 1.

Figure 1.

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Sociocultural multileveled model of stress and coping. Sayegh and Knight’s model is highlighted in gray.

The second level of the expanded model in Figure 1 reflects Bourdieu’s theory of cultural capital or resources as the intermediary link between the larger sociohistorical context and immediate context of care (Bourdieu, 1986). Conceptually, culture can be understood to be a resource or capital that can be spent, bartered, saved, discarded, created, or extinguished. Five types of cultural resources have been identified (Bourdieu, 1986; Heckman, 2007). Material capital includes the built environment, including hospitals, housing, transportation, food production, and sanitation systems (Lynch, Smith, Kaplan, & House, 2000; Ralston, 2017), and is a predictor of health and wellbeing among OAs (Ralston, 2017). Financial capital refers to access to tangible assets that can be used to purchase goods and services (Galama, 2015). Cultural capital refers to one’s knowledge base, skill sets, assets, and social status (Bourdieu, 1986). Social capital refers to resources linked to social networks. The amount of social capital depends on the size of network connections and the resources possessed by network members. Human capital refers to an individual’s genetic assets concerning appearance, intelligence, and talents, as well as their health status (Heckman, 2007). Note that culture also includes barriers to resources in these categories, such as some inequalities, health disparities, and social stigma.

The third level is the individual level and involves matching the situational demands of caregiving with the cultural resources needed to utilize or create coping strategies in response to these demands (see Aldwin, 2007). The double-headed arrows in the model suggest dynamic, transactional relationships among established cultural resources, caregiving situational demands, caregiver needs, and the resources available to caregivers. When the system is in a state of disequilibrium, caregivers may create new cultural resources to meet these demands. Caregiver resiliency is the ability of caregivers to adapt by using thee cultural resources, and is illustrated by the movement from the intermediate level to the individual level (Aldwin & Igarashi, 2016).

Our expanded model differs from Knight and Sayegh’s model in two distinct ways. First, we have expanded their definition of cultural values to refer to resources that can either be pre-existing or newly created to meet ongoing caregiving demands. Secondly, their model focuses on caregiving for patients with dementia, but we believe that this expanded conceptual model may be applicable to a wide range of illnesses and caregiving situations, including HIV-related caregiving. We will apply our conceptual model to the systematic review of the literature on OA caregivers to persons impacted by and/or living with HIV/AIDS in SSA.

Methods

Approach and Search Strategy

We searched both peer-reviewed and gray literature sources for articles published in English between January 1, 1975, and December 31, 2016, on OAs caring for HIV-positive family members in SSA in the following databases: MEDLINE, PsycINFO, Social Sciences Citation Index, CINAHL, Cochrane Library, Africa-Wide: NiPAD, and relevant WHO websites. Articles were included if they met the following inclusion criteria: conducted in SSA; sampled OA caregivers, aged 50 and older; used community samples; and focused on HIV-related impacts. There were no restrictions on sample size or study design. Articles were excluded if they were not available in English. Identified articles from all sources were imported and duplicates removed. Titles and abstracts were read, and if deemed appropriate, the full article was obtained and coded.

Organizing the Information

Caregivers were defined as adult women or men aged 50+ who are providing care to PLWHA and/or children younger than 18 who may or may not be HIV-positive, but need care because of HIV. Most the articles included in this review had an aspect of caregiver stress/burden, orphan caregiving, or the impacts of caregiving on caregiver health, wellbeing, and finances in the title or abstract.

We used a narrative approach similar to Yee and Schultz’s (2000) review of the empirical care giving literature. The diversity in measures used and the heavy reliance on qualitative research made a meta-analysis inadvisable. Several steps were used in organizing this review. Our first step involved summarizing the studies by constructing a table containing the country, sampling strategies, main topical domain, and the salient findings for each study). We considered organizing the articles by country, decade or other time variable (pre-and-post apartheid in South Africa), but there did not appear to be any substantive differences in the reported findings since the late 1990s when this topic first appears, and instead opted to organize it by country and publication date (see Table 1) for heuristic purposes.

Table 1.

Summary of Sub-Saharan Africa Studies on Older Adults Caregiving for HIV/IADS Family and Friends

Author Sample and study design Situational demand Coping Caregiver needs Health impacts
Context/material capital Financial capital Social capital Cultural and human capital Health resource/ strains Health outcomes/ behaviors
Multiple countries
 Lackey et al., 2011 Qualitative OA CGs and OVC (N = 256) Inheritance challenge food security Prevention training Vulnerable ▼ Intergenerational relationships ▼ Intergenerational life skills ▲ Opportunity cost ▼ Physical and mental health
 Zimmer & Dayton, 2005 Comparative cross-sectional OAs in extended household Vulnerable ▼ Support
Botswana
 Shaibu, 2013 Qualitative OAs to OVC (N = 12) age = 60–80 Farm Distance Spiritualty & resilience Vulnerable ▼ Support Hard accept CG role ▲ Opportunity cost ▼ Physical & mental health
 Bock & Johnson, 2008 Experimental Women age = 25–49 years (N = 22) & >50 years (N = 17) OVC discipline Vulnerable ▼ Intergenerational life skills Produce ▼ food
 Thupayagale- Tshweneagae, 2008 Qualitative grandmothers to OVC (N = 25) OVC discipline Blame on witchcraft bad neighbors Vulnerable Stigma Fail to protect family Financial, physical & relational stress Disenfranchised grief Sleepa
 Alpasian & Mabutho, 2005 Qualitative (N = 7) Vulnerable ▼ Support ▼ Physical & Mental health
 Lindsey et al., 2003 Cross sectional (N = 35) OAs are dislocated Spiritualty & resilience Vulnerable Stigma Lack knowledge of HIV/AIDS Financial, physical, & relational stress ▼ Mental health. Fasting of food
 Drah, 2014 Qualitative (N = 49) OAs have assets/lack mobility Spiritualty & resilience Vulnerable multiple job Financial, physical stress ▼ Physical ▲Stress overworkeda
 Mwinituo & Mill, 2006 Qualitative (N = 15) Disrespect by doctors Vulnerable ▼ Support high stigma Hide care work ▼ Physical & mental health
Kenya
 Chepngeno- Langat, 2014 Longitudinal (N = 1,322) Number of OA CGs ▲ annually by 3% Saving ▲ likelihood of CG Age & health ▲ likelihood of CG Serial CG ▼ Physical & mental health
 Chepngeno- Langat & Evandrou, 2013 Longitudinal (N = 1,489) Non-CGs older OAs Lack mobility Age & health ▲ likelihood of CG Serial CG For non-CGs ▼ physical & mental health
 Ice, Sadruddin, Vagedes, Yogo, & Juma, 2012 Cross sectional Luo CGs age = 60+ (N = 40) Mostly female CGs Women ▲ stress than men, Male CGs ▼ stress Stress For women, stress ▲ CG & CG intensity but not number of OVC
 Ice et al., 2011 Longitudinal age 60+ (N = 689) Food Security Vulnerable Social support → BMI Age ▼ Nutrition CG → anthropometric measures Stress negative → anthropometric measures
 Chepngeno- Langat, Madise, Evandrou, & Falkingham, 2011 Cross-sectional N = 1,529) HIV-CGs were younger Vulnerable Gender Female AIDS CGs have ▲ disability & mobility, male CGs ▼ physical health than non-male CGs
 Chepngeno- Langat & Falkingham, et al., 2010 Cross-sectional (N = 1,587) Most CGs were male HIV-CGs wealthier than non-CGs HIV-CGs younger, ▼ schooling & married Male CGs longer care than female CGs who provide critical care
 Skovdal, 2010 Qualitative OA guardians (N = 36), OVC (N = 69) Bidirectional care between OA & OVC Vulnerable OVC are cared for & provide care for OA-CGs
 Muga & Onyango-Ouma, 2009 Qualitative/cross sectional (N = 115) Climate change/increased dependency ratio Vulnerable ▼ Support Intergenerational relationships Food security
 Wangui, 2009 Qualitative 60+ (N = 30) ▲ Nutritional status, increase land assets Hired out or gave land to sons OAs depend on remittances ▼ Support ▲ Nutritional OAs Cared for 2-3 OVC Labor shortage and poor health limited land use
 Ice, Zidron, & Juma, 2008 Cross-sectional mean age 73, (N = 287) Vulnerable Social support → pain Age → SF-36 score and health Grants → low pain, better mental health Female CGs ▲ health than non-CGs, Male CGs ▼ than non-CG
 Oburu, 2005 Cross sectional mothers (N = 115) & OAs (N = 134) Limited food crop Age → OVC emotional adjustment score ▼ Energy, insufficient labor, OA CGs ▲ stress than biological mothers, stress not → OVC adjustment
 Winters et al., 2005 Cross-sectional (N = 103) No → blood glucose & depression
 Juma et al., 2004 Qualitative (N = 84), Food Security/poor housing, OVC Discipline Small–scaled farming, pension, loans, spiritualty Vulnerable Lack knowledge of HIV/AIDS & care skills ▲ Opportunity cost. Financial, emotional, and nursing care ▼ Physical & Mental health Satisfaction for care role
 Oburu & Palmérus, 2003 Cross-sectional (N = 249) Non-literate CGs use coercive discipline OVCs age & assertive discipline → Total stress
 Nyambedha et al., 2003 Qualitative households (N = 1,100) OVC discipline, Inheritance rights Used paid labor, small businesses Vulnerable ▼ Social support, High social stigma Tradition of care ▲ Opportunity cost Skipped meals & missed sleep to nurse infantsa
Lesotho
 Makoae, 2011 Qualitative CGs (N = 21) High HIV prevalence do not know CR HIV statue Maintain ritual of feeding CR food intake linked to CG wellbeing
 Littrell et al., 2012 Mixed methods (N = 1,281) Vulnerable ▼ Social support Aged CGs more stable than younger CGs Must provide financial, emotional and nursing care OA CGs ▼Physical health & Mental health same for both
Malawi
 Sefasi, 2010 Qualitative (N = 116) Resource depletion Vulnerable Knowledge of HIV/ AIDS & care skills Financial, emotional, & nursing care
Nigeria
 Apata et al., 2010 Panel (N = 240) 21% of all OVC loss parents to AIDS Selling assets Vulnerable ▼ Mental health
South Africa
 Sidloyi & Bomela, 2016 Qualitative retired women 60+ (N = 15) Premarital pregnancies, Crime Loans, friend-ship based networks, small businesses OAs Casual work, child labor Social network
 Nyirenda et al., 2015 Cross-sectional CGs and non-CGs age 50+ (N = 422) Vulnerable Household wealth related to wellbeing ▲ Alcohol use AIDS death related to OA poor physical health
 Dolbin- Magnab, Jarrott, O'Hora, Vrugt, & Erasmus, 2015 Qualitative OA women (N = 75) Spirituality, loans, OVC grants Social network OAs Access instrumental support ▲ Social network HIV+ OAs ▲ Health than HIV affected OAs
 Chazan, 2014 Qualitative OA women (N = 100) ▼ Social Support Group OAs enjoyed, & had hope for OVC
 Kidman & Thurman, 2014 Longitudinal (N = 726) Dependency ratio 1:6,Female CGs, Food insecurity Vulnerable ▼ Physical & Mental health
 Schatz & Gilbert, 2014 Qualitative Women, aged 60+, (N = 30) Gendered work/roles Stigma CG-Burden
 Bachman- DeSilva et al., 2013 Longitudinal (N = 4,030) 75% Households had grants, Food insecurity Vulnerable ▼ Physical & Mental health
 Casale & Wild, 2013 Qualitative CGs care for average 2.7 OVC, OVC discipline & crime Vulnerable ▼ Support
 Govender et al, 2012 Longitudinal (N = 616) Vulnerable ▼ Support HIV Wealth depletion ▼ Physical & Mental health
 Schatz & Gilbert, 2012 Qualitative women age 60–75, (N = 30) Lacking piped water,electricity, climate, OVCdiscipline Spirituality, traditional medicines Vulnerable ▼ Physical & Mental health
 Petros, 2012 Cross-sectional OAs in South Africa, (N = 305) Lacking piped water,electricity, Sanitation, bidirectional care Vulnerable Rely on informal support CG-Fair wellbeing, untreated physical & mental illness
 Tamasane & Head, 2012 Cross-sectional (N = 5,254) 1/3rd of children in Kopanong are OVC Vulnerable State gate keepers for child grant Child grants are difficult CG-rated health as Fair
 Petros, 2011 Policy OAs Lacked basic services Vulnerable CG stigma Care under extreme deprivation ▼ Physical Health
 Casale, 2011 Qualitative older adults Adversity, resilience, hire out help Vulnerable child grants are difficult to get ▼ Support Traditional healer ▲ Joy, focus & hope for OVC
 Kruger et al., 2011 Cross-sectional rural OAs (N = 134) & urban OAs age = 60+ (N = 196) Pension main source of income Age Health of HIV affected OVC is compromised Rural OAs had ▲ micronutrient & trace element intake, urban ▲ fat
 Ogunmefun et al., 2011 Qualitative 50–75 age (N = 60) CG secrecy Verbal & Social stigma Marginal diets
 Schatz et al., 2011 Qualitative Women (N = 21) Estrange/disconnected households Vulnerable ▼ Social Support ▲ Social isolation Depression
 Ardington et al., 2010 Panel data Age 60+, (N = 7,127) No difference in expenditure pattern CG & non-CG Pension mitigate consequences of HIV/AIDS No impact of death of Adult child CG-Burden & CG-Stress
 Boon, James, et al., 2010 Cross-sectional (N = 409) Female care for average of 4.65 OVC Income → negative attitude Communicate with OVC Expenditure had no impact on Mental &Physical Health
 Boon, Ruiter, et al., 2010 Longitudinal isiXhosa (N = 820) 21% of Adult children unemployed, 4.8% of the adult children are HIV+, OAs care for a average of 4.6 OVC Vulnerable ▼ Social Support Intervention Program ▲ CG ability to relax
 Raniga & Simpson, 2010 Qualitative OA (N = 15) Pension stabilized family Spirituality ▲ Social supports Adult death ▼ income ▼ Physical & Mental health
 Munthree & Maharaj, 2010 Mixed methods men & women (N = 974) 25% of CGs care > 3 OVC, Females are primary CGs Vulnerable Adult death ▼ income CG-burden/exhaustion
 Boon et al., 2009 Cross-sectional isiXhosa speaking CGs (N=202) 50% of OAs have no income & care for 4.97 OVC Vulnerable Completion ▲ attitudes for PLWHA Completion ▲ CG attitudes, norms & care ▼ Physical & Mental health
 Hlabyago & Ogunbanjo, 2009 Qualitative age 50+ (N = 9) OVC discipline Vulnerable ▼ Support social & services CG painful Mental & physical health/fear risk for HIV
 Nyasni, Sterberg, & Smith, 2009 Qualitative age 50+, (N = 45) OVC discipline Vulnerable ▼ Support social Emotional support to OVC Intergenerational Disharmony CG burden/Physical health
 Hosegood, Preston, Busza, Moitse, & Timaeus, 2007 Qualitative CG age 50+ and OVC 15+ (N = 12) OA men were more likely to be married/OA lived in extended families Vulnerable AIDS death 20% of household Adult death ▼ income Mental Health
 Schatz, 2007 Qualitative OAs age >59 (N = 30) OA lived in extended families Vulnerable ▼ Family support Provide emotional support to OVC Adult death ▼ income
 Hosegood, & Timaeus, 2006 Cross-sectional (N=10,612) 50% of household experience a death of prime-age adult Vulnerable Stigma & isolation OA care expected Adult death ▼ income
 Ogunmefun & Schatz, 2009 Cross-sectional female CGs (N = 60) OA women are becoming CGs Invested in insurance/credit HIV households vulnerable Extended family supported OAs pay for all care to PLWHA
 Reddy, James, Esu-Williams, & Fisher, 2005 Qualitative (N = 89) Pensions are used for household needs, OVC discipline Vulnerable Community social support Must carry out multiple parenting roles CG is emotionally & physically demanding
Tanzania
 de Klerk, 2011 Qualitative OA caregivers Data collected before roll-out of antiretroviral therapy CRs are hidden to keep social support Concealment means good parenting & loving care ▲ Mental health
 Dayton & Ainsworth, 2004 Cross-sectional Age = 50+ (N = 757) OA are not mobile in households Death of prime- age adult → presence of OAs Healthy household 2× ▲ gainful activity rates, 42% of deaths were among prime-age adult Prime-age adult death → ▲ BMI
 Ainsworth & Dayton, 2003 Cross-sectional Age = 50+ (N = 1512) 56% of OAs have no durable assets, 67% of deaths attributed to AIDS Vulnerable Adult death ▼ income BMI ▲ women than men 42% of deaths were among prime-age adult Household wealth ▲ BMI for OAs OVC in household ▼ → BMI
Togo
 Moore, 2007 Qualitative age = 50+, (N = 7) Emotional coping, sought professional help Adult death ▼ income Adult death ▼ social support OAs felt too old for CG OAs pay for all care to PLWHA & OVC Accepting death of adult child, CG burden for OVC
 Moore & Henry, 2005 Mixed Method OAs (N = 50) Condoms, stopping sexual activity, monogamy Vulnerable Adult death ▼ income ▼ social support & isolation Do not believe HIV care is risky Need affordable drugs &foods CG burden for OVC
Uganda
 Rutakumwa et al., 2015 Qualitative OAs (N = 40) dyads Subsistence food production Vulnerable ▼Social support Financial, physical & relational stress ▼ Physical & Mental health &bidirectional CG
 Seruwagi, 2014 Qualitative (N = 129) Bidirectional caregiving between CGs and OVC OAs support early marriage OAs provide instrumental s upport for education ▼ Physical & Mental health &bidirectional CG
 Kasedde et al., 2014 Qualitative OA (N = 61) Reciprocity Cultural intergenerational exchange Preparing OVC for OA’s death Vulnerable ▼ social support & Stigma Use of traditional medicine Timing of CG Financial & relational stress
 Mugisha et al., 2013 Cross-sectional, (N = 510) CG work → financial & physical support Women → financial support than men Women care for OVC & provide → care than men CG work, poverty, poor health HIV → CG burden
 Kamya & Poindexter, 2009 Qualitative OA CGs (N = 11) HIV/AIDS deaths, war and famine Spirituality/inner resiliency Vulnerable Logistics of care & money Stress, fear & poverty
 Nankwango, Neema, & Phillips, 2009 Qualitative (N=215) 58% of population has lost someone to AIDS Social support, professional help, faith ▼ social support & Stigma Lack of education about HIV Burden of OVC care is on rural OAs
 Ssengonzi, 2009 Qualitative (N = 27) PLWHA’s finances → OA CG ▼ social support & Stigma Women provide care mostly spouse ▼ Physical & Mental health
 Ssengonzi, 2007 Qualitative N = 20, Food insecurity Food cultivation Vulnerable ▼ social support & Stigma Women provide care mostly spouse Financial, physical & relational stress ▼ Physical & Mental health
 Kakooza & Kimuna, 2005 Cross-sectional OA, age 50+ (N = 300) Vulnerable ▼ social support & Stigma Financial, physical & relational stress ▼ Physical & Mental health Balance dieta
Zimbabwe ▼ Physical & Mental health
 Zvinavashe, Mukombwe, Mulkona, & Haruzivishe, 2015 Qualitative OVC- CGs (N = 30) In adequate housing Seek help from donations, sold surplus goods Vulnerable ▼ social support No physical & Mental health problems
 Mhaka- Mutepfa et al., 2015 Cross-sectional Mean = 62.4 (N = 327) Most have access to care Material capital not → ASLb score Social support → ASL score Age → with resilience & ASL Urban OAs, physical & Mental health → ASL
 Skovdal et al., 2011 Qualitative Nurses (N = 25) OAs, (N = 8) Food needs are being met via NGOsc Lack of transportation Vulnerable ▼ social support Poor health literacy Financial, physical & care stress ▼ Physical & Mental health
 Mudavanhu, Segalo, & Fourie, 2008 Qualitative Age = 50 + 6 (N = 12) Climate instability Food insecurity Seek help from donations, grants Vulnerable Financial, physical & care stress ▼ Physical & Mental health
 Agyarko et al., 2002 Food insecurity, Community violence Vulnerable Stigma Fear of contracting HIV Financial, physical & care stress ▼ Physical & Mental health
 Bindura- Mutangandura, 2001 Qualitative mean 50+ (N = 20) Resource reallocation join burial societies Adult child death ▼ Vulnerable Adult child death ▼ social support Financial, physical & care stress ▼ Physical & Mental health
 Mupedziswa, 1997 Policy study Climate instability Food Insecurity Foreign debt Use pension Vulnerable Adult child death ▼ social support Need for healthcare, food, and shelter
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Note: BMI = Body mass index; CG = caregiver; CR = care-recipient; OA = older adult(s); OVC = orphan and vulnerable children; PLWHA = person(s) living with HIV/AIDS.

aHealth behavior. bAcceptance of self and life events. cNongovernmental organization.

We grouped these items into the categories defined by our theoretical model to illustrate the importance of cultural resources on informal caregiving. Finally, where appropriate, we noted examples of health outcomes across the three broad domains of health resource strains, health behaviors, and health outcomes.

Results

A total of 122 articles were identified from the databases, out of which a total of 81 met all the selection criteria and were used in the study. Articles were excluded because the topic did not include caregivers (n = 17), the caregiver was too young (n = 9), the study was not based in SSA (n = 11), or did not meet other criteria (n = 3). Out of the 81 reviewed articles, most were situated in South Africa (n = 31), followed by Kenya (n = 16), and Uganda (n = 9), Zimbabwe (n = 7), with the remaining studies in Botswana (n = 5), Ghana (n = 2), Lesotho (n = 1), Malawi (n = 2), Nigeria (n = 1), Tanzania (n = 3), and Togo (n = 2). Two cross-sectional studies on OA caregivers examined five or more countries at once. The articles described a variety of methods to collect data including, qualitative data collection (44%), cross-sectional and longitudinal quantitative studies (51%), and mixed-methods research studies (5%).

Situational Demands

The deaths of prime-age adults have altered household composition and access to resources (Adamchak, Wilson, Nyanguru, & Hampson, 1991; Agyarko, Madzingira, Mupedziswa, Mujuru, & Kanyowa, 2002; Ainsworth & Dayton, 2003; Cohen & Menken, 2006). The articles detailed the poor infrastructure, such as the lack hospitals, medications, access to land, irrigation and modern farming techniques, food distribution, and transportation, as well as widespread unemployment, food insecurity, and climate change. This impacts OA caregivers’ ability to provide safe and effective care to PLWHA and to OVC (Ainsworth & Dayton, 2003; Juma, Okeyo, & Kidenda, 2004; Muga & Onyango-Ouma, 2009). For example, in Tanzania, early publications reported that social safety nets were compromised (Kaijage, 1997), hospitals were overwhelmed (Uys & Cameron, 2003), and food insecurity was commonplace (United Republic of Tanzania, 2006). Recent reports from Tanzania suggest that little has changed. HIV-related stigma and discrimination, stress, and care burden continue to challenge resources for caregiving (de Klerk, 2011; Pallangyo & Mayers, 2009).

AIDS-related deaths have resulted in the creation of 12-million orphans who have largely been absorbed into extended family networks comprised of OAs (Hlabyago & Ogunbanjo, 2009). In most countries in SSA, the extended family, primarily grandparents, care for a large number of OVC (HelpAge International, 2008; Monasch & Boerma, 2004). In national household surveys conducted in 40 countries, only 13 of the countries included information on OA caregivers (Monasch & Boerma, 2004). In those 13 countries, between 24% and 64% of OAs were fostering OVC affected by HIV/AIDS. In Malawi, OAs cared for nearly half (46%) of orphans who have lost both parents. Despite the relatively low prevalence of HIV/AIDS in Kenya, the percentage of OAs providing care increased from 11% in 2006 to 14% by 2014 (Chepngeno-Langat, 2014). In Namibia, the proportion of orphans being cared for by grandparents rose from 44% in 1992 to 61% in 2000 (UNICEF, 2003). In Zimbabwe, South Africa, and Namibia, 60% of AIDS orphans lived with OA caregivers (Zimmer & Dayton, 2005).

Caregiving for OVC has some positive aspects. In Kenya, OVC in the household was associated with better health outcomes for men (Ice, Juma, & Yogo, 2008). In Botswana, a country with the second highest prevalence of HIV/AIDS in the world (17.6%), both children and OAs provide bidirectional care (Lindsey, Hirschfeld, Tiou, & Neube, 2003). Similar patterns of bidirectional care were reported in Kenya and South Africa (Petros, 2011, 2012; Skovdal, 2010). Often, OAs are receiving care for non-HIV or HIV-related health issues or personal care (Nyirenda, Evandrou, Mutevedzi, Hosegood, & Falkingham, 2015). In SSA, OVC often do necessary chores, such as hauling water, tending animals, and so on, which helps both to fill in the labor gap caused by parental death and helps the grandparent’s household economy (Sidloyi & Bomela, 2016; Skovdal, 2010). This care work by OVC is not purely instrumental. In Uganda, the care work for OA caregivers was described as compassionate, highly desired, and loving (Rutakumwa et al. 2015; Seruwagi 2014).

Food insecurity, reported in most of the reviewed articles, is perhaps one of the most unanticipated effects of the HIV/AIDS epidemic. This stems in part from the loss of working age adults, access to land, inheritance laws, and an overall of loss of productivity due to poverty (Agyarko et al., 2002; Mwanyangala, Mayombana, & Urassa, 2010; Pallangyo & Mayers, 2009), time spent caregiving, lack of knowledge of modern farming techniques, increased household size, aging, and chronic health problems (Nyirenda et al., 2015; Oburu, 2005; Wangui, 2009). OAs who cared for very young children seem to be particularly burdened (Shaibu, 2013).

In summary, the HIV/AIDS literature has largely focused on the impacts of caring for OVC rather than OAs caring for both adult children and grandchildren. Research is needed on the influence of HIV-related caregiving responsibilities versus other types of informal care and how care recipients are affected when an established caregiver experiences a decline in health or functional status.

Caregiver Needs

Caregiver needs reflect the range of resources required for support. Included is the availability of resources that directly impact caregiver performance in assistance with activities of daily living (ADL), and instrumental activities of daily living (IADL), such as the access to financial capital, social support (social capital), and caregiving know how (cultural capital).

Financial Capital

The main source of income for caregivers varied by country. In South Africa, the majority of OAs depend on the old-age pensions and cottage industries, e.g., selling fruit, milling grain, or providing other nondurable goods and services (Bachman-DeSilva et al., 2013). The impact of public transfers are considerable; a Cape Town study found no differences in expenditure patterns between households with orphans, AIDS-related deaths, and other OA households (Ardington et al., 2010). Household subsidies did initially promote stabilization of households in SSA (Raniga & Simpson, 2010). However, the subsidies were not enough and subsequent studies reported that OAs were financially worse off after providing care to a family member with HIV (Bachman-DeSilva et al., 2013; Casale, 2015; Casale & Wild, 2013; Cohen et al., 2015; Kidman & Thurman, 2014).

Many SSA countries do not have broad pension coverage, and poverty consistently impinges on cultural resources throughout the region. Reasons for economic insecurity center around six recurring themes. First, caregiving duties prevented engaging in income-generating activities (Chazan, 2008; Juma et al., 2004; Shaibu, 2013), and second, there were fewer family members available to farm and tend cattle (Lindsey et al., 2003; Wangui, 2009). Third, repeated bouts of caregiving depleted household resources (Chepngeno-Langat, 2014), often resulting in the fourth problem, poor health. Fifth, what few government grants exist are often inconsistent, insufficient, and nonaccessible (Bachanas et al., 2001; Hlabyago & Ogunbanjo, 2009; Petros, 2012; Tamasane & Head, 2012). Finally, HIV-related caregiving resulted in a lack of support from surviving sons and daughters, as well as inheritance inequalities among male and female family relatives. Thus, there are multiple pathways to poverty among older caregivers.

Social Capital

Despite the large literature on caregiving and PLWHA in high-income countries (HICs; Prachkul & Grant, 2003), most studies only examined instrumental social support and stigma. Several SSA studies reported that OA caregivers continue to experience a shortage of informal supports from family, friends, or neighbors (Alpasian & Mabutho, 2005; Boon, Ruiter, et al., 2010; Nyambedha, 2007; Nyambedha, Wandibba, & Aagaard-Hansen, 2003). Most OAs in South Africa (86%) reported that they were solely responsible for providing basic need for dependents (Boon, Ruiter, et al., 2010). In Malawi, only 31% of OAs were dependent on adult children for help (Sefasi, 2010). In Kenya, social support was linked to increased pain and higher BMI scores (Ice, Heh, Yogo, & Juma, 2011; Ice et al., 2008; Wangui, 2009).

Instrumental support from nonfamily sources was equally strained. Several studies reported that OA caregivers were not treated with respect by governmental official and by hospital staff, including doctors (Hlabyago & Ogunbanjo, 2009; Mwinituo & Mill, 2006; Tamasane & Head, 2012).

OA caregivers experienced many forms of stigma. In Botswana, OAs reported a sense of loneliness and isolation and that stigma was experienced by both caregivers for PLWHA and other chronic diseases (Lindsey et al., 2003). Caregivers in South Africa reported verbal, voyeuristic, and physical stigma (Hosegood & Timaeus, 2006; Lindsey et al., 2003; Ogunmefun, Gilbert, & Schatz, 2011). In Ghana, OA caregivers go to great lengths to hide the HIV status of care recipients as well as their caregiving activities, resulting in isolation of both the PLWHA and the caregiver (Mwinituo & Mill, 2006).

Coping Strategies

Studies of coping mainly addressed financial strategies and religious/spiritual strategies. OA caregivers coped with financial strain by using their knowledge and social networks to access old-age and foster-care grants, as well as their saving accounts (Ardington et al., 2010). In Kenya, OA caregivers engaged in small-scale farming and the selling of assets to meet the ongoing care needs of PLWHA and funeral costs (Wangui, 2009). There is some evidence that OAs in South Africa use a revolving pool of microcredit as a source of income (Lackey, Clacherty, Martin, & Hillier, 2011; Ogunmefun & Schatz, 2009; Schatz & Ogunmefun, 2007). Additional coping strategies included: applying for food grants, carefully managing income, investing in funeral insurance and credit programs, and creating associations to form social support networks (Casale, 2011; Chazan, 2008, 2014; Juma et al., 2004).

Several studies reported the use of spirituality as a coping mechanism (Drah, 2014; Shaibu, 2013). In South Africa, caregivers reported talking to their pastor, congregants, and praying to God (Chazan, 2008). Alternately, silence and concealment of AIDS illness was a coping mechanism identified in South Africa to protect and honor individuals affected by HIV/AIDS (de Klerk, 2011).

Health Impacts

Health Resource Strains

There are several unusual characteristics of HIV-related caregiving in SSA. The first is serial caregiving—many OAs care for one adult child, and then another—either concurrently or sequentially, as well as their offspring. In Kenya, 10% of noncaregiving OAs in a household transitioned into caregiving and 50% of these caregivers were providing care transitioned to noncaregiving status (Chepngeno-Langat & Evandrou, 2013). A second feature is the number of care-recipients, which are generally not analyzed with regard to caregiver health outcomes or asset dissolution. Caregiving is associated with high opportunity costs where OAs must forgo gainful opportunities to provide care (Nyambedha, Wandibba, & Aagaard-Hansen, 2001).

Health Behaviors

Health behaviors were only examined by two studies. In the first, OA caregivers reported foregoing meals, restricting their food intake, or working extra jobs to purchase the care-recipient’s preferred food (Kruger, Lekalakalamokgela, & Wentzel-Viljoen, 2011). The second study found that alcohol abuse was problematic for OA caregivers in South Africa (Sidloyi & Bomela, 2016).

Health Outcomes

Grandparents are grieving both for their adult children and report stress in caregiving for grandchildren. In Botswana, OAs had “disenfranchised” grief: they had to hide their own pain of losing adult children because they had to serve as a source of strength to the surviving grandchildren (Thupayagale-Tshweneagae, 2008). Grandmother caregivers in Botswana, Togo, and Uganda reported that they felt depressed and isolated, with a loss of control when grandchildren were unruly and disrespectful (Kamya & Poindexter, 2009; Moore, 2007; Thupayagale-Tshweneagae, 2008). Over half (57%) of Kenyan caregivers reported a poor quality of life and 74% reported that caregiving had a large impact on their lives (Lindsey et al., 2003). Kenyan caregivers of HIV-positive kin had poorer self-reported health compared to other types of caregivers. Men reported worse health than women and new caregivers were more likely to report having a major health problem compared with those who had never provided care (Chepngeno-Langat, 2014). Thus, the majority of the studies find impaired mental and physical health among caregivers, perhaps due to their greater poverty and age.

Discussion

The literature on OA caregiving in SSA is fragmented across several disciplines. Despite the more robust literature on HIV-related caregiving in HICs, much less is known about OA caregivers providing HIV-related care to adult children and grandchildren in SSA. This is important because, in many ways, the situation in SSA presages a dilemma that HICs will be facing in the next few decades—namely, many OAs will be requiring care and there will be too few caregivers (AARP, 2013a, 2013b).

We found that OA caregivers in SSA face a range of challenges that can be framed by the sociohistorical context of population aging and AIDS. Further, our adapted cultural resources model emphasizes the collective nature of both the stressors and adaptive strategies. Most of the articles reviewed focused on material and economic resources, with comparatively fewer about psychosocial resources such as nonfinancial social support and coping in the SSA context. Although access to “public goods” is critical to caregiver wellbeing, it does little to address contextual factors such as, inheritance rights, intergenerational conflict, HIV-stigma, and rising dependency ratios (Lackey et al., 2011; Ralston, 2017). Another topic not addressed in the reviewed literature was related to the development of post-colonial migrant labor patterns (Camlin et al., 2010). However, the relationship between migration and AIDS is complex, and most individuals move to urban centers for economic benefits. Whether this applies to OA caregivers is unknown.

Our multileveled model allows for the capturing of the social-cultural context of caregiving in SSA (population aging and HIV/AIDS pandemic). Studies reviewed consistently reported resource constraints that framed the situational demands of care including: lack of material capital (safe housing, roads, and transportation); lack of inheritance rights; and lack of food security (Ice et al., 2011; Lackey et al., 2011). These stressors were further augmented by the necessity of needing to care for multiple family members, either serially or at the same time (Chepngeno-Langat, 2014; Zimmer et al., 2005).

A significant finding was that the bidirectionality of caregiving was often emphasized. Grandchildren were not only the recipients of care, but they also provided much needed household and farm labor which enhanced their grandparents’ ability to provide care (Kasedde et al., 2014; Petros, 2012; Skovdal, 2010). The care by OVC was not purely instrumental (e.g., running chores). OAs draw strength from their OVC and attach a great deal of importance to the quality of their relationships (Seruwagi, 2014).

Third, at the individual level, the use of cultural resources was linked to a range of coping strategies, such as religious/spiritual coping, which is a very important resource. However, the collective nature of some of the coping strategies allowed for leveraging in resource-poor environments. Villagers reported communal strategies for financial and nutritional shortfalls, as well as for accessing often-distant medical care and meet cultural demand of funeral costs (Njororai & Njororai, 2013).

The relationship between caregiving and caregiver physical wellbeing was more complex. Several studies reported poor health outcomes, but a few studies reporting positive health outcomes. Some of this may be due reverse causality—younger and healthier individuals may take up caregiving duties. However, there is some evidence that having a purpose in life may prove beneficial for older caregiver’s health (Casale, 2015). The SSA grandparents are often literally the only factor preventing complete destitution of their households, which provides a powerful incentive for maintaining functional health.

Despite the resource-poor environment in SSA, many OA caregivers nonetheless exhibited resilience. They drew on their religious/spirituality, their sense of purpose, and their embeddedness in the communities. Despite social stigma, they often utilized collective strategies. Finally, this review emphasized the importance of OAs—in holding together their families and cultures in the face of an overwhelming pandemic and economic pressures.

Conclusion and Future Directions

The current body of evidence uncovered in this literature review partially supports our adapted conceptual model. This model allows for an integrated understanding of the stress and coping processes stemming from the wider cultural context. By identifying cultural resources and the collective nature of coping and adaptation in a resource-poor environment, our model provides a framework for caregiver intervention that is not solely focused on the individual, but recognizes the importance of targeting community-level efforts in interventions.

Bidirectional caregiving is emerging as an important construct (Nagpal, Heid, Zarit, & Whitlatch, 2015). We need more research understanding the dynamic transactions between family members, friends, and the larger community to understand the resources that can be both drawn on and created during stressful situations. Next steps for research in this field should include the identification of processes that fortify existing cultural resources or the development of cultural resources that influence caregiver resilience.

Funding

This study was supported by funds from the National Institute on Aging Diversity Supplement NIH/NIA 3R01AG044917-02S1 to Dr J. Small.

Conflict of Interest

None reported.

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