Introduction
In documenting the reality of HIV/AIDS in the world's most affected regions, the tragedy of the disease can easily overshadow all else. The adverse effects of the epidemic on individuals and households have featured in much of the published work, and understandably so. However, there are too few examples of more nuanced analyses that reflect not only adversity and challenges, but also the positive responses, perspectives and experiences that (co)exist within this tragic picture. For example, the disproportionate burden of care borne by southern African families, and in particular women and older carers, has been well documented, as have its social, psychological and physical risks. But much less attention has been paid to these care-givers' own testimonies of positive responses, experiences and change, with a view to constructively informing interventions.
By discussing findings of qualitative research conducted with female carers of children in South Africa's Kwazulu-Natal province, one of the world's most HIV-affected regions, this paper sets out to highlight not only the ongoing challenges faced by these care-givers, but also the strength, resourcefulness and leadership qualities they demonstrate in striving to ensure their household's survival. In doing so it aims to (1) add to experiential empirical data on the notions of ‘resilience’ and ‘coping’ and (2) reinforce previous studies that challenge the stereotype of older carers or ‘rural African grandmothers’ as isolated and passive victims of a changing world, rather than key agents of change (e.g. Chazan Reference Chazan2008; Mathambo and Gibbs Reference Mathambo and Gibbs2009). The overall objective is to call attention to potential spaces for more refined policies and programmes aimed at supporting these carers and their families.
Specifically, this paper presents and discusses two key themes emerging from qualitative interviews,Footnote 1 conducted in a peri-urban township in the Amajuba District, Northern Kwazulu-Natal, South Africa. This research was part of a larger multicountry studyFootnote 2 that aimed to investigate parents' perceptions of challenges and threats to their families' welfare, and how they were acting and planning to secure their children's future (Casale et al. Reference Casale, Drimie, Quinlan and Ziervogel2009; Drimie and Casale Reference Drimie and Casale2008). A more detailed description of the research methodology and site is provided in the methodology section below. The two themes explored in this paper focus on older (grandmother) carers; specifically: (a) how older carers are responding to adversity to ensure their families' survival, through their strength and resourcefulness and (b) the leadership role older women are taking in affronting HIV and related stigma within their own families. These themes unfold through the insights provided by the stories of two of the women interviewed, one grandmother and one biological mother of the children in their care. The two stories are constructed from four separate interviews with each of the two women. They represent the experience of two of the many (extra)ordinary women caring for children in a low-resourced semi-rural South African community, highly affected by the HIV epidemic. They will be discussed in the context of the broader set of study findings from our research in Amajuba and the relevant literature on HIV, care-giving, stigma and resilience.
Background
Burden of care and multiple stressors confronting care-givers in southern Africa
The disproportionate burden of care currently borne by women in southern Africa is receiving increasing attention amongst scholars, as are the challenges that come with it. The demand for care amongst children alone is overwhelming: it is estimated that over 11.5 million of the 15 million AIDS orphans world-wide live in sub-Saharan Africa (UNAIDS 2008), and this figure does not include the growing number of children who may not be orphaned but are still in need of care. The extended family is considered the ‘traditional social security system’ in many parts of the continent (Freeman and Nkomo Reference Freeman and Nkomo2006) and has to date taken in the majority of orphaned children (Ansell and Young Reference Ansell and Young2004; Freeman and Nkomo Reference Freeman and Nkomo2006; Kuo and Operario Reference Kuo and Operario2009; UNICEF 2003). Although this is generally regarded by policy makers and practitioners as a more beneficial option for children than institutional care (Freeman and Nkomo Reference Freeman and Nkomo2006), it shifts the costs and stresses of caring on individuals and families (UNICEF 2003).
It is mainly women who take on this role as providers of care in the home, for both children and the ill (Campbell and Foulis Reference Campbell and Foulis2004; Howard et al. Reference Howard, Phillips, Matinhure, Goodman, McCurdy and Johnson2006; Kakooza and Kimuna Reference Kakooza and Kimuna2006; Kipp et al. Reference Kipp, Matukala Nkosi, Laing and Jhangri2006; Steinberg et al. Reference Steinberg, Johnson, Schierhout and Ndegwa2002). This may occur for various reasons, including traditionally accepted gender roles of women as principal care providers (Freeman and Nkomo Reference Freeman and Nkomo2006; Kipp et al. Reference Kipp, Matukala Nkosi, Laing and Jhangri2006) and the absence of men in the homes due to factors such as death, abandonment or men's involvement in income-earning activities (Akintola Reference Akintola2004). Moreover, grandparents and pensioners are most likely to take responsibility for non-biological children (Freeman and Nkomo Reference Freeman and Nkomo2006; Howard et al. Reference Howard, Phillips, Matinhure, Goodman, McCurdy and Johnson2006; Kakooza and Kimuna Reference Kakooza and Kimuna2006; Kamya, Poindexter and Cannon Reference Kamya and Poindexter2009), given the absence of prime age adults due to high mortality.
Various studies expose how demanding care-giving can be for female carers in southern Africa, and how this can lead to or accentuate physical, emotional and psychological, financial and even ‘social’ stress (the latter referring to the ‘disruption of ordinary social life’; Chimwaza and Watkins Reference Chimwaza and Watkins2004: 804) (Campbell and Foulis Reference Campbell and Foulis2004; Chimwaza and Watkins Reference Chimwaza and Watkins2004; Howard et al. Reference Howard, Phillips, Matinhure, Goodman, McCurdy and Johnson2006; Kakooza and Kimuna Reference Kakooza and Kimuna2006; Kipp et al. Reference Kipp, Matukala Nkosi, Laing and Jhangri2006, Reference Kipp, Tindyebwa, Karamagi and Rubaale2009; Knodel, Watkins and VanLandingham Reference Knodel, Watkins and VanLandingham2002; Orner Reference Orner2006; Schatz Reference Schatz2009; Ssengonzi Reference Ssengonzi2009; Thomas Reference Thomas2006). This is especially true in the context of widespread poverty, food insecurity and other stressors these carers are having to deal with (Baylies Reference Baylies2002; Belue et al. Reference Belue, Schreiner, Taylor-Richardson, Murray-Kolb and Beard2008; Chazan Reference Chazan2005; Gillespie and Kadiyala Reference Gillespie and Kadiyala2005; Howard et al. Reference Howard, Phillips, Matinhure, Goodman, McCurdy and Johnson2006; Maunder and Wiggins Reference Maunder and Wiggins2006) and the absence of adequate public sector or community safety nets (Howard et al. Reference Howard, Phillips, Matinhure, Goodman, McCurdy and Johnson2006).
Moreover, many older women are taking on parenting responsibilities at a time of their lives when their own physical strength and health are more fragile (Ssengonzi Reference Ssengonzi2009); the disruptive effects of changes in household structure and living arrangements on these carers' ageing process and wellbeing can thus be ‘far reaching’ (Ssengonzi Reference Ssengonzi2009). Although this role of African grandmothers as surrogate mothers is not new or unique to the era of AIDS (Chazan Reference Chazan2008; Marais Reference Marais2005) what is distinct, in a situation where young working-aged adults are dying, is the unprecedented dissolution of these older women's current and future safety nets: the death of their children and young adult relatives deprives them of ‘traditional reciprocal care relationships’ (Chazan Reference Chazan2008; Marais Reference Marais2005) – characterised by remittances and financial support – as well as the promise of future material and emotional care as they age. Thus, older people are increasingly losing their carers and instead required to become carers themselves (Schatz Reference Schatz2009). They are often the sole or primary breadwinners, having to support a household with their pensions and seek income-generating work (Kimuna and Makiwane Reference Kimuna and Makiwane2007).
‘Resilience’ and coping amongst care-givers
In light of the above, it is not difficult to see why a large part of the literature on care-giving and HIV/AIDS in southern African has focused on related risks and challenges. However, there is also an increasing focus on coping and resilience of these – predominantly female – care-givers. Akintola (Reference Akintola2008), for example, uses the term ‘defying all odds’ to describe the various strategies through which volunteer care-givers in semi-rural South African communities overcome the many practical challenges they habitually face, to continue providing care (Akintola Reference Akintola2008). The terms ‘coping strategies’ and ‘resilience’ have been used widely to describe households' and individuals' responses to HIV and AIDS, poverty and other stressors. The use of these terms in relation to the effects of and responses to HIV/AIDS has, however, also been critiqued (e.g. Rugalema Reference Rugalema2000) and bridging experiential data with the broad theoretical work in this area remains a challenge. Part of this is related to the diversity of definitions and use of these terms. The concept of ‘resilience’, for example, has been used by various life sciences and social sciences (Gallopin Reference Gallopin2006) and there is divergence in the foci, meanings and terminology attributed to this construct and its components both across and within disciplines. However, a common element of these definitions is the ability to positively respond or adapt to significant adversity, be this trauma, tragedy, stress (see e.g. Luthar, Cicchetti and Becker Reference Luthar, Cicchetti and Becker2000 amongst the psychology literature) or shocks and disturbances (see e.g. Folke et al. Reference Folke, Carpenter, Elmqvist, Gunderson, Holling and Walker2002; Walker et al. Reference Walker, Holling, Carpenter and Kinzig2004, for the socio-ecological systems literature).
One of the limitations of using the term ‘resilience’, when referring to the apparent strength and coping of care-givers in adverse conditions, is the implication of sustainability, as it suggests the ability to maintain a given equilibrium or standard of living in the long run (Folke et al. Reference Folke, Carpenter, Elmqvist, Gunderson, Holling and Walker2002; Walker et al. Reference Walker, Holling, Carpenter and Kinzig2004). This may not, however, be the case for many households or individuals in conditions of poverty, HIV/AIDS and other stressors. Similarly, it has been argued that the adoption of the term ‘coping strategies’ to describe the way households deal with the effects of HIV/AIDS, is misguided, and risks undermining the urgency to intervene (Campbell and Foulis Reference Campbell and Foulis2004; Rugalema Reference Rugalema2000). One of the arguments underpinning this critique is that the terms ‘coping’ and ‘strategy’ are associated with success and the ability to restore household ‘social and economic viability’, as well as the existence of plans to achieve specific goals, whereas this is not the case for the many AIDS-affected households forced to dissolve or respond to immediate needs (including illness and death) in ways that jeopardise their future capacity to cope (Rugalema Reference Rugalema2000). However, once again, interpretations of ‘coping’ are not uniform across or within disciplines. As noted in the socio-ecological systems literature (Smit and Wandel Reference Smit and Wandel2006), some authors apply ‘coping ability’ to shorter-term capacity or the ability to just survive, and other terms, such as ‘adaptive capacity’, for longer-term or more sustainable adjustments. Similarly, in the health and social psychology literature, Folkman et al. (Reference Folkman, Chesney, Mckusick, Ironson, Johnson, Coates and Eckenrode1991) argue that ‘coping’ is based on how people perceive a particular situation and appropriate responses to it, versus the outcome or success of coping. The implication is that we can refer to care-givers as ‘coping’ in adverse conditions, to the extent that they are appropriately responding to challenges perceived, through their thoughts and actions, even where the longer-term outcomes of their actions are not successful.
In this paper, to avoid ambiguity, the terms ‘coping’ or ‘responses to stresses’ will be used to refer to actions taken by care-givers to respond to immediate challenges, rather than the terms ‘coping strategies’ or ‘resilience’ which may denote longer-term sustainability. The analysis below draws from interviews conducted with carers of children, to discuss stresses they face and actions taken to cope, as perceived, experienced and explained by these carers themselves. Due to the nature and duration of the study, these data focus on short-term actions taken to cope, although I do consider and discuss the longer-term risks and costs they point to.
Methodology
We interviewed nine women from the Amajuba district (KwaZulu-Natal province, South Africa) who were primary care-givers of children in different households, on four separate occasions during October 2006 to March 2007. The Amajuba district has a population of just under 470,000 recorded in the 2001 national census. Newcastle is the regional industrial centre and the district's agricultural node. Formal employment and social grants underpin livelihoods in the district (Bachman Desilva et al. Reference Bachman Desilva, Beard, Cakwe, McCoy, Nkosi, Parikh, Quinlan, Stalicky, Tshabangu-Soko, Zhuwau and Simon2008). Employment opportunities lie primarily in the industrial, retail and residential sectors of the town, which are expanding. However, socio-economic and demographic data indicate that there are significant disparities within the district; for example, unemployment was estimated at 61.5 per cent in 2005 and HIV prevalence amongst women attending antenatal clinics at 46 per cent in 2006; the estimated poverty ratio for the district is around 57 per cent.Footnote 3
Our research was conducted in peri-urban settlements in ‘townships’ approximately 25 kilometres from Newcastle centre. They are peri-urban in the sense of the relatively low density of households, good size of plots and the presence of open areas (fields) amongst households. Most inhabitants carry out some subsistence horticulture and a few keep small livestock, in addition to working in the formal and informal market economy. The main roads are tarred, and the majority of inhabitants have access to electricity and running water, school feeding schemes and free public health care (clinics). Although a 2003 report identified over 400 community-based organisations (CBOs) involved in child and family welfare in the district (Jurgensen Reference Jurgensen2003), none of our study participants reported having benefited from these.
The interviews were semi-structured and supported by participant observation, selected key informant interviews and a review of secondary context-relevant documents. A combination of purposive and snowball sampling methods were used. Sampling criteria included: at least one adult primary care-giver present in the household, at least two children present in each household and at least one child younger than 12 years of age in the household. Respondents' ages ranged between 30 and 90 years of age. Two carers interviewed were looking after only biological children, two were looking after only ‘surrogate’ children (grandchildren or great-grandchildren) and five were caring for both biological children and grandchildren. The number of children in their care ranged from three to 13.
The first interview schedule, covering general health and socio-economic status of the household, was piloted and formed the foundation of the field research. Subsequent interview schedules were compiled taking into account responses to the previous schedules from all sites; they included questions related to household food security, health and general livelihood challenges. The fourth interview was a feedback module, used to disseminate findings to respondents as well as to ‘test’ them, by inviting respondents' reflections on our findings. Interviews were carried out in the participants' local language by the lead researcher and an experienced bilingual field coordinator on each site. Ethics approval was obtained from the University of Kwazulu-Natal.
A first analysis of the data was conducted by the research team on each site; responses and themes were identified on a question by question basis. A broader thematic analysis was then conducted in two stages, through group discussions involving the entire cross-country research team. This included key themes and ideas emerging on each site and an extrapolation of commonalities and differences across sites, based on the theoretical framework that guided the study. Its aim was to identify and discuss multiple challenges faced by households, their livelihoods in terms of assets they possessed, their coping strategies, possible outcomes of these and their longer-term actions and plans for their children's future.Footnote 4
This paper presents a portion of the overall analysis, specifically those findings from the Amajuba sample that provide insight on carers' experiences with HIV/AIDS and its effects. The section below explores and discusses two key themes emerging from these data, with the aim of reflecting both the challenges and positive elements within each of these: the first theme looks at how older carers are ensuring their families' survival in the face of adversity, through their strength and resourcefulness; the second explores the leadership role older women are taking in affronting HIV and related stigma within their own families. Each of these themes is supported with the story of one of the carers interviewed, as well as the broader qualitative data from interviews with all nine carers.
Results and discussion
Adversity and ‘resilience’: Zandile's story
Our data show that, despite significant material and emotional stresses, older carers ensure their families' survival through their strength and resourcefulness, and take pride in their roles as ‘surrogate’ parents. Zandile's story serves as an illustration.Footnote 5 Zandile is a 48-year-old carer, looking after four grandchildren and one biological child. In recent years, Zandile lost both her daughters to HIV/AIDS. Her first daughter came back from Zimbabwe to her mother's home four years ago, ill and thin. Zandile took her to the hospital but was ‘chased away’. She said treatment was available at the time, but she believes her daughter had waited too long and came back too close to death to take antiretroviral drugs (ARVs). Zandile's second daughter was also HIV positive. Zandile explained that her illness was identified by a traditional healer. This daughter started taking ARVs, but died soon after from an overdose of her medicine. Zandile believes her daughter committed suicide as she preferred to die rather than live with HIV.
Following her daughters' death, Zandile had to leave her job as a domestic worker to look after their children. She had to use savings from her previous work to pay for funerals and food for the household. Zandile only recently managed to hold the traditional isiZulu rituals for her deceased children to be reunited with their ancestors. She had postponed these because they were very expensive and she needed the money to support her family. But she felt guilty and afraid of what the ancestors could do out of anger; she believes they have already spoken to her through the illness of a grandchild (one of her deceased daughters' children). Zandile financed these events with all her savings, kept from working ‘a long time ago’. The children's fathers are alive but do not visit or support the children in any way; they are living far from Amajuba with their wives and other children.
In order to support her family Zandile runs a tuckshop, grows and sells her own vegetables, and uses the child grants received. She also receives a disability grant due to a health condition, which she describes as acute, debilitating bodily pains that last for up to ten days at a time. Zandile deposits whatever (little) money she is able to put aside in savings accounts opened for her children's education. Her greatest hope for her children is to see them married and with jobs before she dies ‘to see and be proud of raising them’. Her more immediate wishes are to be able to buy her children items such as a basket-ball pole or computer.
Emotional and material stresses of HIV/AIDS on carers and household
Zandile's story illustrates both the emotional and material impact of the HIV/AIDS epidemic on care-givers and their households, as described by much of the literature cited above. This grandmother had to deal with the emotional loss of two of her biological children and the financial pressure of having to support her children's children left behind, as well as pay for the funerals and traditional isiZulu rituals intended to reunite her deceased offspring with their ancestors (these funerals and rituals represented a significant expense for households in this community, as in other isiZulu communities; see e.g. Schatz Reference Schatz2009; Steinberg et al. Reference Steinberg, Johnson, Schierhout and Ndegwa2002). Besides losing the material security and care her children may have provided, Zandile also had to consume her life's savings, another source of financial security, to sustain expenses related to her children's illness and death. Since their death she has been struggling to address the basic needs of the children (grandchildren) in her care, having to juggle various income-generating activities and use her disability grant. Moreover, for Zandile, becoming her grandchildren's surrogate mother did not only mean greater responsibilities and expenses. Her life changed completely, as she was forced to leave a full-time job and break with other social commitments.
Zandile's story is not very different from that of other grandmother carers in Amajuba and, more broadly, in many southern African communities. There was agreement amongst all Amajuba carers interviewed that the effects of the epidemic on their community were great and that HIV/AIDS affected families both in terms of financial and emotional costs. As highlighted by another respondent (a mother, 46 years old), ‘HIV/AIDS has a great impact [on the community]. People in the community are dying, and it is taking money from our pockets before taking the soul of the person’. Respondents explained that many orphaned children were left in their grandparents' care. As for Zandile, these older carers were often left finding ways to meet HIV-related household costs and simultaneously supporting the household, including orphaned children. This could be all the more challenging for families affected through multiple young adult deaths, as Zandile's story suggests (see e.g. Hosegood et al. Reference Hosegood, Preston-Whyte, Busza, Moitse and Timaeus2007).
Besides the material costs, our study participants also spoke about the grief of having lost a child or young adult relative and the anxiety of struggling to fulfil the financial and emotional needs of their children in severely resource-constrained conditions, which could even affect their physical health. Zandile, for example, believed that the health condition she suffered from was a result of the stress of losing her children, combined with her difficulty in providing her family with basic necessities. She explained:
As far as I'm concerned I got this sickness from the stress of losing my children. I asked for food from welfare at the time, but didn't get it. But now the children are getting grants and things are better. My illness sometimes affects me, since I can't look after the garden for a few days.
Similarly, several other grandmother carers spoke of how distressed they felt when they were unable to provide basic necessities for the children in their care, and how this anxiety affected their physical health. For example, one 64-year-old grandmother described herself as follows during periods of household food insecurity: ‘I get sick. My blood pressure rises. I get worried about the children. The children are the ones that comfort me’.
Strength and resourcefulness of carers
Importantly, however, Zandile's story and the stories of other care-givers interviewed do not only reflect the stresses related to care-giving. They also tell of the central role of carers in supporting their children and running the household. Several anecdotes highlighted, in particular, the role of older women as leaders in the household. One 35-year-old biological mother explained: ‘We have a big yard and that provides food in difficult times … The heavy rains destroy crops. Granny [respondent's mother] takes care of it. She hires a tractor to do everything’. The stories also illustrated the resourcefulness of these women in responding to the challenges described above. This transpired clearly from Zandile's account of her diversified sources of income and strategies for coping with care responsibilities; these included running a tuck shop, growing vegetables for household consumption and sale, accessing child grants and stretching her pension, negotiating payment of school fees through instalments and belonging to a ‘food stokvel’ (informal support group that purchases food in bulk and provides loans to members to purchase food).Footnote 6 This diversification was not unique to Zandile's situation. Most carers interviewed drew from various sources of income and income-generating activities.
For example, one fiesty grandmother, carer of 13 children, proudly told of how she was still working at the age of 90, cleaning people's yards, to supplement the pension she received. She argued that there were a lot of employment opportunities available but that many young people were simply not hard-working enough. Similarly, other carers interviewed spoke of their multiple sources of income, as explained by a 75-year-old grandmother, on being asked how she deals with the challenges of providing food and maintaining the children's health:
I am mixing herbs and selling mutiFootnote 7 to the local public. This gives me money for daily expenses. I am getting an old-age pension and assistance from my daughter. The older child is getting the orphan grant and the little one is getting the child grant.
Additional coping mechanisms employed by Zandile and other care-givers interviewed included reducing the family's food intake and variety, going without food themselves to allow their children to eat, carefully managing their income in order to save, obtaining support from social networks and belonging to ‘stokvels’ and/or burial societies (informal savings associations or insurance schemes). Reciprocity was reportedly a key coping strategy, in the form of ‘borrowed’ money or food from family members or neighbours and – less frequently – emotional support and assistance with care-giving responsibilities.
A further unusual response to limited resources for basic needs, as highlighted by Zandile's story, was that of postponing traditional ‘spiritual’ obligations – specifically the traditional isiZulu rituals held to reunite deceased family members with their ancestors – in order to fit the bill for current household priorities, such as food and children's school fees. This was considered an extreme choice for carers to have to make, as it entailed ‘negotiating’ with the ancestors and risking their wrath. As explained by Zandile, who believed that her ancestors had communicated their discontent with the postponement through her granddaughter's illness: ‘They [the ancestors] don't talk straight. They can do anything: make children fail exams, kill livestock …’ Similar explanations were provided by other respondents, such as this 48-year-old grandmother:
You have to set a date with them [the ancestors] so when you shift the date you have to update them and explain again; and it is difficult for them to understand. The ancestors may make everything go wrong because they are angry about this.
Our data also exposed the co-existing worlds of ‘tradition’ and ‘modernity’ that these carers moved between and, at times, found themselves having to juggle or reconcile. There is perhaps no better example of this coexistence than respondents' health-seeking behaviour, which reflected beliefs in both ‘traditional’ and biomedical remedies. This is clear from Zandile's story: that is, her recognition that her daughter's HIV status had been diagnosed by a traditional healer, yet, at the same time, her acknowledgement that her daughter's death could have been avoided if she had sought treatment (ARVs) earlier. The simultaneous use of medicines and traditional remedies (home-made or obtained from a traditional healer) to treat the same ailment was the solution chosen by most carers interviewed; by increasing their options they believed there was a greater likelihood that something would work. Recourse to both ‘modern’ and ‘traditional’ sources thus appeared to allow carers to draw from broader and more diversified resources, and to interact better with a changing world.
For example, Zandile told of how she had taken her adolescent granddaughter to both a doctor and traditional healer when the child had been ill earlier in the year. The doctor at the clinic had provided her with disinfectants, creams and tablets, while the traditional healer had given her muti. As she explained: ‘I don't know which one [remedy] worked, but it worked because she got better. I'm not sure whether the white or black doctor cured her’.
Finally, while longer-term ‘strategies’ and parental planning amongst respondents were scarce overall, there were a few exceptions, such as channelling the little left-over household income to savings for children's future education, or incrementally improving houses and residential sites as a form of security for the children's future. A 39-year-old biological mother explained: ‘If we were employed, we could help my mother build the new house [ash and brick rondavel]. She is building this on her own with her pension money’.
Emotional rewards of caring for children
Zandile's main concerns and hopes were centred on her children's immediate and longer-term happiness and security. Seeing them settled and employed before she died was her greatest hope, which would accentuate her sense of fulfilment deriving from her role as surrogate mother: ‘My hopes for my children are to see them get married and get good jobs before I die, to see and be proud of raising them’. In the shorter run, Zandile explained that she would like to make her children happy by using whatever savings she managed to accumulate to buy items such as a basket-ball pole or a computer for them.
Our broader data contain many testimonies of the pride, love and enjoyment that these women derived from their role as carers, despite the multiple challenges faced. Similarly to Zandile, most care-givers spoke affectionately about the advantages of having the opportunity to live with and care for their children, the satisfaction they derived from doing things to please their children and the hopes they had for their children's future. A 64-year-old grandmother explained: ‘We are like friends. We discuss matters. If one person is not around we miss each other. We pray together’. Several carers expressed pride in the responsibilities taken on by their children and the strong family bonds they enjoyed, as illustrated by this 46-year-old grandmother: ‘When the situation is smooth in the house they [the children] love each other. The older one is taking care of her sisters and brothers. When they're really short of something she comes with help’. Another 74-year-old grandmother carer stated simply: ‘I am living a peaceful life with my grandchildren. Nothing else’.
Also, as for Zandile, most carers' primary hopes and concerns for the future were to see their children established (e.g. married or employed) before they died. This, however, coexisted with the fear – especially amongst older carers – of not living to see this materialise; their concern was that they would die before their (older) children were able to take care of themselves and the rest of the family. These children – and in particular these children's future stable employment – were therefore seen as central to their family's future survival. The ‘skipped generation’ and significant age gap between these older carers and their surrogate children appeared to heighten this concern. As explained by Zandile:
My main concern is my children. If I die I don't know where they will go, since I'm the only one taking care of them. I've spoken to my son [adult urban migrant] about this but he says he won't take care of them.
Other carers expressed similar concerns and hopes, such as this 74-year-old grandmother: ‘If God is on my side, before I die I wish to leave them [my children] with their own jobs and houses and a good life and be healthy. Then I would rest in peace’.
Discussion: challenges, coping and rewards of care-giving
The story above and our broader data highlight the many challenges faced by older female care-givers in the context of HIV and AIDS and other stressors, as widely documented in the literature cited above. They also bring to light the resourcefulness of the actions these women take to ‘cope’ or respond to the challenges, and their central role in ensuring the survival of their households and children. However, despite the apparent ‘resilience’ of these carers, or ability to respond positively and adapt to significant adversity in the short run, there are also indications of longer-term risks that these responses pose, in terms of depleting resources or jeopardising the future capacity of households to cope (Drimie and Casale Reference Drimie and Casale2008; Rugalema Reference Rugalema2000). Examples include the potential negative outcomes of reduced food intake and variety, and taking on debt or other costly future commitments to free up current household resources.
Our data also highlight the psychological ‘rewards’ of care-giving, that have received a lot less attention in the literature and are often overlooked, especially with regard to caring for children. Yet it is argued that these roles can be deeply fulfilling and satisfying and that perceived rewards can buffer carer burnout (Demmer Reference Demmer2006). Also commonly overlooked is the fact that orphans can play an important role in helping carers cope with their loss of the person who died (Thomas Reference Thomas2006), by representing an emotional connection to that person (e.g. the carer's deceased children in the case of grandparent carers), as well as continuing the family line and ‘restoring reciprocal support networks’ through their (future) labour and income (Thomas Reference Thomas2006) that will assist and support carers (Schatz Reference Schatz2009). While our data highlight pride, family bonds and responsibility that some of the children are taking within their households, the concerns expressed by carers for future security were less about themselves and more about the survival of their family; older children were seen as central to supporting the family and younger children in the future, rather than the carer in particular.
Leadership role in affronting HIV and related stigma: Thandi's story
Although stigma and denial are reportedly still rife in respondents' communities, there are suggestions of positive change and, in particular, of older women taking a leadership role in affronting the epidemic within their own families. Thandi's story serves as an illustration. Thandi is 46 years old and is caring for six of her own children. Two of her siblings are HIV positive. Her sister was falling ill frequently but refused to be tested as she was afraid to discover she was HIV positive. She was afraid of how she would be treated if her family and community found out about her status. Eventually Thandi's mother managed to convince her to take an HIV test by going for a test herself, and promising not to disclose her daughter's status to anyone (including other family members). Thandi's sister tested positive and is now going for frequent check-ups and counselling and will start with ARVs ‘when the time is right’. Yet, Thandi explains, the best counselling her sister received was from her mother. Thandi believes that her sister decided not to disclose her status for two reasons: firstly, she is the eldest sibling and being HIV positive would not be considered a good example to the rest of the family, and secondly, her younger sister has an alcohol problem and might insult her because of her HIV status during a quarrel (and others may overhear). Thandi's brother, on the other hand, is always ill and drinks a lot too. The family sees ‘symptoms of HIV/AIDS’. Thandi's brother's son died five years ago and the doctor said the child was HIV positive. Yet Thandi's brother refuses to go for an HIV test because he is also afraid of knowing his status. Thandi says that if her brother were to find out that he is HIV positive ‘he could kill himself’.
Stigma and self-denial within the community
Thandi's story illustrates the effects of perceived stigma and denial within families and communities. Both Thandi's brother and sister were afraid of discovering and disclosing their HIV status as a result of their own perceptions of the disease and for fear of being stigmatised. While her sister eventually decided to face up to her condition, her brother chose to resist and live in denial – even at the risk of death – rather than know his status and gain access to available treatment. Her story alludes to some of the feared consequences of disclosure, such as discrimination by neighbours and family members and even (in this case verbal) abuse.
Most interviewees agreed that stigma or the perception of stigma was still rife within their communities. Stigma, including self-stigmatisation, and denial were reportedly the primary reasons as to why many people were afraid to speak openly about the HIV/AIDs epidemic, go for an HIV test or disclose their status, even to family or neighbours. Both Zandile's and Thandi's stories suggest extreme choices and actions, such as the decision to risk death rather than go for an HIV test and seek treatment (as in the case of Thandi's brother), or the decision to take one's own life (as suggested by Zandile's tale of her daughter's death). Several respondents explained that some people in the community were afraid to know they were HIV positive; the implication being that not knowing – versus accessing treatment – would protect them from experiencing the disease and its progression.
Carers interviewed explained that what motivated community stigma was a lack of education or knowledge on the part of those who stigmatised; this allowed for myths and stereotypes to persist and for people living with AIDS in the community to be isolated, shunned or neglected. As explained by Thandi: ‘People are not educated enough and ignorance leads to people concluding “this person has been bewitched” or “this person must be a prostitute”’. Zandile provided the following explanation:
There is a lot of stigma. People laugh at an ill person. For example if you use a wheelbarrow to take them to the clinic people will laugh. It would be better to hire a car.
Signs of positive change
Yet despite testimonies of ongoing stigmatisation, there were also references in our data to stigma within the community not being as bad as it used to be. A 33-year-old biological mother described the situation as follows: ‘Stigma in this community is bad, but better than before. Before people were laughed at, even killed’. There were also suggestions that individuals' fear of stigma within their family and community were unfounded. Thandi, for example, said that she did not know of many cases of HIV-related stigma in her community, and believed that her sister's decision not to disclose her status was mainly due to her sister's own fear and the tensions within her family. Another respondent spoke of the ‘normalisation’ of AIDS: she explained that it was so widespread and common in the community that the disease and its symptoms were becoming as accepted as a minor illness, such as the flu virus. This 39-year-old biological mother insisted that people in her area were empathetic to the situation of HIV-infected and affected individuals:
People from this area do not stigmatise, they sympathise. People have accepted this disease, like flu. They [people who are HIV positive] think the community will make a joke of their illness. But they won't.
Older women as leaders in addressing HIV/AIDS within their families
Thandi's story also illustrates the decisive leadership role taken by a family elder in addressing HIV/AIDS within her own family. This is all the more significant, as the literature shows that in many African communities (including isiZulu communities) referring to the HIV/AIDS epidemic is considered a sign of disrespect (Harrison, Xaba and Kunene Reference Harrison, Xaba and Kunene2001; Leclerc-Madlala Reference Leclerc-Madlala1999; Tillotson and Maharaj Reference Tillotson and Maharaj2001). Conventional wisdom would therefore lead us to believe that older carers would be more reluctant to engage with or affront issues around HIV and AIDS, as would carers living in more ‘traditional’ rural settings. One respondent explained that people in the community used indirect terms to refer to the epidemic because it was ‘so difficult’ to talk about HIV and AIDS, and that there were cultural reasons for this: ‘in our culture and language talking about sex is an insult’. Yet there are several examples within our data of carers' experiences and actions challenging these assumptions and cultural taboos by taking on a central role in openly affronting the epidemic within their families. The two stories above provide us with examples: Zandile's acceptance of her late daughters' illness and her support both to her daughters and the grandchildren she is now caring for; Thandi's mother persuading her daughter to face up to her illness by setting the example herself. As elucidated by Thandi:
Now she [my sister] is going to counselling. But the counselling she got from my mother is best. My mother promised no-one will know about her status, not even relatives. No-one knows.
There are also several other examples within our data of older women taking a lead role in addressing HIV/AIDS within their family. These include: grandmothers breaking the silence around HIV within their families, acting as examples of positive behaviour, trying to persuade younger family members to get tested and reduce risk behaviour, and providing care and support for their HIV positive children and these children's offspring. For example, a 90-year-old grandmother interviewed told us that she did not want to talk about HIV, as the subject angered her. She had been for an HIV test, which was negative, and had showed the results to the children, grandchildren and great-grandchildren in her care. She had told them to get tested, but reported feeling very disappointed that not one of them had come back to her with the results.
Several other grandmother carers interviewed insisted that the stigma and silence within families needed to be tackled. They argued that parents should be talking about the epidemic and/or explained that they were doing so with the children in their care. One 64-year-old grandmother explained: ‘Parents should be talking about HIV/AIDS but I'm not sure if they are. Most don't talk directly about the disease but I don't know why they are hiding this information’. On being asked how she is dealing with the challenges faced in caring for older children, another 74-year-old grandmother gave the following details: ‘I'm giving them advice about death, happening especially to youth. We sit down and talk about these things’.
Discussion: stigma, positive change and leadership of older women
Our findings illustrate the much-documented effects of stigma amongst communities, households and individuals (Akintola Reference Akintola2008; Campbell and Foulis Reference Campbell and Foulis2004; Orner Reference Orner2006; Ssengonzi Reference Ssengonzi2009), which include silence, secrecy and denial amongst carers and families (Akintola Reference Akintola2008; Campbell and Foulis Reference Campbell and Foulis2004; Hosegood et al. Reference Hosegood, Preston-Whyte, Busza, Moitse and Timaeus2007; Kipp et al. Reference Kipp, Matukala Nkosi, Laing and Jhangri2006; Ssengonzi Reference Ssengonzi2009), or even extreme responses, such as hostility and ostracism from families and communities (Akintola Reference Akintola2008; Kipp et al. Reference Kipp, Matukala Nkosi, Laing and Jhangri2006; Thomas Reference Thomas2006). Moreover, our results regarding a perceived decrease in stigma are consistent with findings of recent studies, based on carers' perceptions (Kipp et al. Reference Kipp, Bajenja, Karamagi and Tindyebwa2007) and an unexpected number of participants reporting the epidemic as the cause of death of family members (Freeman and Nkomo Reference Freeman and Nkomo2006). Other studies have shown fear of disclosure to be unfounded, as respondents' families and communities are generally supportive to HIV-infected individuals and their care-givers (Chimwaza and Watkins Reference Chimwaza and Watkins2004; Ssengonzi Reference Ssengonzi2009; Steinberg et al. Reference Steinberg, Johnson, Schierhout and Ndegwa2002). A qualitative study conducted in Uganda (Ssengonzi Reference Ssengonzi2009) concluded that this increasing support is likely to be the result of the widespread nature of the epidemic within communities and the high knowledge of how HIV is transmitted; this reflection is based on respondents' explanations that HIV-affected households are no longer looked down upon as they were during the ‘early’ years of the epidemic, since everyone has had a close relative affected and can now identify with the disease.
Our data also provide examples of these women playing a central role in confronting the epidemic within their families. However, despite growing evidence of positive change with regard to stigma, there is a dearth of literature that looks at how grandmothers and older female care-givers may be seen as agents of this change. Yet, it is argued (Knodel, Watkins and VanLandingham Reference Knodel, Watkins and VanLandingham2002) that older persons have a key potential role as intermediaries in HIV prevention and treatment and interventions should therefore take advantage of these ‘assets’; older carers would have a substantial interest in encouraging safe behaviour among their children and younger relatives and may also have the necessary ‘emotional and material leverage’ (Knodel, Watkins and VanLandingham Reference Knodel, Watkins and VanLandingham2002).
Conclusion
This paper presents experiential data, from one southern African community, on the many challenges faced by carers – in particular women and older carers – but also on their strength and determination, resourcefulness and compassion. It is clear from our data that these women and elders are not merely ‘absorbing’ gradual change and crises, such as HIV and AIDS, but are responding to and engaging with this change, using the human and financial resources at their disposal to ensure their families' survival (Mathambo and Gibbs Reference Mathambo and Gibbs2009) and, in the process, (re)shaping their own changing lives and identities.
To the extent that they are positively responding in the face of adversity, and surviving ‘against all odds’, these carers may be seen to be demonstrating a high level of resilience. But are they really? Returning to the definitions discussed above, our data provide few examples of longer-term planning and strategies, but rather show more immediate ‘coping’ responses to adversity. Moreover, several of these actions point to the risk of longer-term deterioration of living conditions and lack of sustainability, from which the adaptability of grandmothers and testimonies of ‘coping’ should in no way divert attention. These include the financial, physical and emotional price these carers are paying to ensure that their children are still cared for and their families do not disintegrate (Chazan Reference Chazan2008; Ogden, Esim and Grown Reference Ogden, Esim and Grown2006). To revert back to definitions and critiques cited above (Folke et al. Reference Folke, Carpenter, Elmqvist, Gunderson, Holling and Walker2002; Rugalema Reference Rugalema2000; Walker et al. Reference Walker, Holling, Carpenter and Kinzig2004), we should therefore exercise caution in using terms such as ‘coping strategies’ and ‘resilience’ of this population.
On the other hand, I argue that the converse argument also holds, in that we should not allow the long-term risks of caring and coping to obscure the importance of considering immediate and short-term responses, with their risks and successes. In order to support carers and their families at various levelsFootnote 8 through a coherent inclusive agenda (Miller et al. Reference Miller, Gruskin, Subramanian, Rajaraman and Heymann2006), focusing not only on the challenges, but also on the positive qualities, experiences and perceptions of carers, can provide us with important spaces and opportunities for intervention. This should in no way seek to romanticise the vulnerabilities of this population (Campbell and Foulis Reference Campbell and Foulis2004; Rugalema Reference Rugalema2000) nor ignore the longer-term risks of current ‘coping’, but rather aim to propose a more useful platform for interventions to take advantage of and build on. Nuanced analyses also recognise that positive dimensions such as resourcefulness and optimism coexist with fear and despair for these carers themselves, as our data illustrate.
Evidence that African grandmothers are, in many cases, dynamic resourceful women with agency and leadership qualities, able to respond to a modern world while continuing to embrace tradition, should be central in considering how and where to support them, as well as highlighting the importance of their active role and participation in such responses (Miller et al. Reference Miller, Gruskin, Subramanian, Rajaraman and Heymann2006; Ogden, Esim and Grown Reference Ogden, Esim and Grown2006). For example, a better understanding of coping strategies adopted by older women carers, their effectiveness and how they change over time (Akintola Reference Akintola2008) can provide us with insight on their specific needs and resources (Miller et al. Reference Miller, Gruskin, Subramanian, Rajaraman and Heymann2006; Ogden, Esim and Grown Reference Ogden, Esim and Grown2006). Similarly, a greater awareness of the emotional benefits linked to caring, and the areas in which these carers are already demonstrating authority and agency, can assist in determining where and how to best support them in this role.
Looking to our data, evidence of increasing community acceptance of HIV/AIDS, and the leadership role already taken on by older female carers in addressing prevention, treatment and stigma within their own families, suggests a positive space to support community-level responses and the central involvement of older carers within these. Similarly, these women already appear to be finding ways of reconciling ‘tradition’ and ‘modernity’ in addressing their daily challenges and needs. This is nothing new, but it poses particular dilemmas and opportunities in a context of generalised HIV/AIDS and the changing roles of older women. Seeing these two worlds not only as tensions but also as diverse resources, and working in particular with female elders to reconcile them, are important approaches for interventions.
Lastly, this paper points to related themes that merit further attention from the research community. In a longer-term perspective, the central role of older carers in keeping families together beckons the question of sustainability, specifically of what will happen to the children in their care when they are no longer around (Chazan Reference Chazan2008; Drimie and Casale Reference Drimie and Casale2008). This is a crucial question in the context of generalised HIV/AIDS, where the present generation of surrogate mothers is ageing, the ‘next generation’ is waning (Chazan Reference Chazan2008) and future ‘replacements’ are increasingly uncertain (Freeman and Nkomo Reference Freeman and Nkomo2006). Ultimately it points to the importance of forward-looking research and interventions that consider intergenerational impacts of the epidemic (Chazan Reference Chazan2008; Drimie and Casale Reference Drimie and Casale2008). Here perhaps greater engagement with the resilience literature – with its systems and longer-term focus – may prove to be of some value in providing us with lessons on how to achieve this. More immediately, evidence that women and older carers are more likely to have thought about their own death and placement strategies highlights a positive space for support with succession planning (Freeman and Nkomo Reference Freeman and Nkomo2006).
A second potential objective for future research is to achieve a better understanding of factors influencing carers' ‘resilience’ and ability to cope and, in particular, the role of child–carer relationships. Various studies, across disciplines, point to interpersonal relationships and connectedness to family as important social resources or ‘capital’ (Belsey Reference Belsey2005; Peterson and Govender Reference Peterson, Govender, Peterson, Bhana, Flisher, Swartz and Richter2010) that can moderate the negative effects of stressful situations and strengthen resilience or the ability of individuals and families to cope (Alperstein and Raman Reference Alperstein and Raman2003; Belsey Reference Belsey2005; Chambers Reference Chambers1989; Folkman et al. Reference Folkman, Chesney, Mckusick, Ironson, Johnson, Coates and Eckenrode1991; Heaney and Israel Reference Heaney, Israel, Glanz, Lewis and Rimer1997; Peterson and Govender Reference Peterson, Govender, Peterson, Bhana, Flisher, Swartz and Richter2010; Werner Reference Werner1995). A key question therefore is how the mutual and intergenerational bonds between older carers and the children in their care – embodying carers' commitment to see their ‘new’ families survive beyond their death – may influence their determination and survival ‘against all odds.’ It suggests we move further beyond a focus on how HIV breaks down households and relationships, to afford greater attention to the resulting ‘families’ and bonds created.
Acknowledgements
I acknowledge the important contributions of our research participants and our ‘Child Future Security’ research team. This study was developed and supported by the Regional Network on AIDS, Livelihoods and Food Security (RENEWAL), coordinated by the International Food Policy Research Institute (IFPRI); specific funding was provided by the Swedish International Development Cooperation Agency (SIDA). In particular, I would like to thank my colleagues Andrew Gibbs, Scott Drimie and Professor Tim Quinlan for their valuable feedback on this paper.
