2.6 PROVISION OF HEALTH AND WELFARE SERVICES IN SOUTH
fact there has been a rise in the absolute amounts allocated for social spending since the end of apartheid, with a decline in the proportion spent on health and education and a rise in welfare spending (Budlender & Lund, 2008). Despite this, better quality living conditions for the poor have not necessarily been a reality in the decade following the implementation of GEAR (Patel, 2005).
In South Africa formal provision for the care needs of dependent people is offered by health and welfare departments. Prior to the 1994 elections there was an emphasis on curative and hospital- based care, but this changed to a focus on preventive and promotive primary health care with the introduction of the new democratic government, which emphasized the role of community health centres, local clinics and the training of para-professional health workers (Van Rensburg &
Harrison, 1995). A district health system was introduced as the new vehicle for the delivery of health care services (McCoy & Engelbrecht, 1999, p. 132). However, in the words of Tollman and Pick (2002, p. 1725), since the new government came to power it has
struggled to realize the promise contained within the decentralized, PHC (primary health care)-centred policy framework … Community-based health practice in many parts of South Africa remains poorly developed, and this lack of development has seriously constrained local health development…
These authors cite a lack of managerial capacity and limited community-based experience as some of the obstacles to achieving successful community-based health practice. Moreover, although efforts have been made over time to link district health system development to local government development, the health districts and the municipal boundaries are still not fully aligned.
At the same time, developmental social welfare – as introduced in the White Paper on Social Welfare – was adopted by the new government as its approach to welfare. The underlying aim was that policies for economic growth be closely integrated with social welfare policies. Similar to primary health care, this approach is seen as promoting ‘prevention’ as opposed to ‘cure’
(Mullagee, Nyman, Budlender, & Newman, 2001). This approach is rights-based, it emphasizes participation in development, as well as partnerships between the state, private, non-profit sectors and families and communities. Developmental social welfare tackles the issue of human agency in development and active citizenship. It also attempts to come to terms with financial and human resource constraints that present in a context of mass poverty and HIV/AIDS (Patel, 2005).
According to Lund (2008a), in South Africa’s welfare sector a distinction was traditionally made between direct welfare services and state social assistance in the form of cash transfers.
Developmental social welfare aims to provide people with pathways out of poverty with cash transfers remaining “as support of last resort” (Lund, 2008a, p. 1). Yet through embracing a neo- liberal paradigm in the form of GEAR, some believe that the government has shifted its focus away from social goals. Although social spending may have increased in absolute terms, Patel (2005) points to the individualization of care that has occurred, with responsibility for social welfare having moved from the state to individuals, families and the private sector.
In line with the primary health care and developmental social welfare approaches, HCBC has been adopted by government as the preferred policy approach to meeting the need for care for all groups. The Department of Health (2001b, p. 1) introduced guidelines on HCBC in 2001,
defining HCBC as “the provision of health services by formal and informal caregivers in the home, in order to promote, restore and maintain a person’s maximum level of comfort, function and health including care towards a dignified death”. No clear definition is given of CBC, but HBC is defined as an integral part thereof. HBC is described by the Department of Health (2001a) as a cheap, cost-effective and flexible means of providing basic symptomatic and palliative care for people with HIV/AIDS.6
According to the Department of Health, HBC programmes may be targeted at a range of
beneficiaries including those with HIV/AIDS. The goals and objectives include ensuring access to care and follow-up through a functional referral system, and empowering the client, the
caregiver(s) and the community through appropriate targeted education and training (Department
6 In practice the reality of how HBC, CBC and HCBC are implemented differs from the official government definition of these terms.
of Health, 2001). HBC is described as requiring little or no medical input, with nurses as lead actors and most activity undertaken by nursing assistants or community workers with basic training (Department of Health, 2001a). The scope for primary health care management of HIV- infected individuals and their families is proposed in the form of psychosocial support to families, supervision of palliative care and follow-up of patients discharged from hospital (Department of Health, 2000a, 2000b). The role players are to come from the formal system (doctors, nurses, psychologists, rehabilitation therapists, social workers), the non-formal system (NGOs, CBOs and faith-based organizations (FBOs), traditional healers and traditional leaders), the private sector, the informal system (caregivers, families, community health workers, volunteers), and finally the client/consumer (Department of Health, 2001b).
The Department of Health states that most of the conditions affecting adults with HIV infection can be effectively managed at home. Cost-effectiveness is frequently underlined: HBC is described as a means by which increased demand for care can be diverted away from hospitals and into a lower-cost environment (Department of Health, 2000b). Another frequent theme is that this approach is better for the person receiving care.
However the guidelines make no reference to gender and there is no focus on family caregivers within the home (Hunter, 2005). Moreover “it is the informal carers who are going to be the ‘case managers’ chiefly responsible for the organization and procurement of the appropriate care
‘package’ for the person they are caring for” (Ungerson, 1987, p. 144). Yet this is not acknowledged and no guidelines are given on how this ‘case management’ is to unfold practically.
How is HBC defined by the Department of Social Development? There is no policy document similar to that of the Department of Health on the Department of Social Development’s website, so it would appear that this department does not have a separate policy on HCBC. Both
departments are, however, mandated to work together on this programme. The Department of Health’s definition of HCBC is a relatively narrow definition which focuses on the cared-for similar to that adopted in this thesis. The expanded public works programme, for which the
Department of Social Development is the lead department, defines HCBC as “the provision of comprehensive services including health and social services, by formal and informal caregivers in the home” (Department of Public Works, 2006). For the Department of Social Development and for the expanded public works programme the term HCBC has a broader definition that also includes services to child-headed households, orphans and vulnerable children. (Department of Public Works, 2006; Department of Social Development, 2002). A wide array of services offered by various HCBC organizations falls outside of the ambit of actual HBC (Community Agency for Social Enquiry, 2005).
HCBC programmes are run by NGOs/FBOs/CBOs, some of which are subsidized by the Department of Health or Department of Social Development to do so. Much of the research on caregiving in the home has tended to focus on community caregivers who are part of HCBC programmes, but who do not live within the home of the cared-for and who do not provide care on an everyday basis, as family caregivers do. In many cases the distinction is not clearly made between these non-resident caregivers and family caregivers. While some of the tasks undertaken by community caregivers are the same as those undertaken by family caregivers, this service cannot be said to be the same.
As Lund (2008b) notes, the employment regime of community caregivers is very varied. The most informal are unpaid volunteer carers who are not ‘employed’ although they are working and may be attached to small and informal NGOs/FBOs/CBOs. On the other extreme are trained community health workers, paid by the Department of Health and attached to a health team at a clinic. Their work is monitored and supervized, they receive a stipend, and are ‘employed’, though most do not receive any work-related benefits. Recently a policy framework for
community care workers has been drafted which aims to improve the management of community caregivers, lay out a structure for compliance with relevant legislation such as the Basic
Conditions of Employment Act and set up requirements for the various departments and programmes involved in this service delivery (Department of Health and Department of Social Development, 2009).
In 2005 HIV prevalence for the total population was 11.0 percent for South Africa using the ASSA 2003 model, and 15.6 percent for KwaZulu-Natal (Actuarial Society of South Africa AIDS Committee, 2009). This means that in South Africa there are and will be a substantial number of people in need of care. Much social research in South Africa has been on those infected and their care provision. Research has looked at the experience of morbidity and mortality within households (Johnson et al., 2002), the CBC programmes in place (Russell &
Schneider, 2000), and the means by which these programmes can be extended (Goudge, Gilson,
& Msimango, 2003; Johnson, Modiba, Monnakgotla, Muirhead & Schneider, 2001).
Booysen, Bachmann, Matebesi and Meyer (2003) conducted a longitudinal study of HIV/AIDS affected and non-affected households, where affected households were those in which the person being cared for were HIV/AIDS affected and non-affected households did not include persons suffering from tuberculosis or pneumonia. They found that being cared for at home was slightly more likely among those care recipients from affected households than those from non-affected households. Moreover, ill members in affected households required significantly more care at home, than those in non-affected households, with care provided mainly by family members.
There were fewer economically active persons in affected households, and these households were more dependent on non-employment sources of income.
Steinberg et al. (2002) undertook a study of 771 AIDS-affected households that had contact with NGOs. They found that over two-thirds of caregivers within households were female, and more than 40 percent of households reported that the primary caregiver had taken time off from formal or informal work or schooling to care for the AIDS sick person. The households worst affected by HIV/AIDS were also most underserved by basic public services such as sanitation and piped water.
Only a few studies provide detail on the experience of family caregivers. Akintola (2006) undertook research with unpaid caregivers of people living with HIV in two semi-rural communities in the greater Marianhill area, outside of Durban: that is, 21 primary (family) caregivers and 20 volunteer (non-family) caregivers. Ten key informants were also interviewed.
Almost all caregivers were women. Akintola found a general lack of male participation in HBC even when men were present in study households, and a gendered division of caring roles.
Most family caregivers were sisters or mothers of those in their care, and none was a spouse.
Caregivers undertook a wide array of caring activities and experienced noteworthy physical health effects associated with caregiving due to the physically taxing nature of the caregiving tasks they carried out. Work overload was found to be a direct result of the lack of support from other family members. These caregivers had multiple-caring commitments, which transcended the care of the person in their care. Emotional and psychological problems were experienced by caregivers, in particular, constant worry about the pain and suffering of those in their care was recorded, as well as a concern over their inability to provide a cure for the person’s illness. Some caregivers were themselves living with HIV or AIDS which added to their distress.
Akintola notes that HBC policies and programmes work on the assumption that family members are available, willing and capable of caring for ill people in their homes. Yet these findings show that HBC as currently practised constitutes the transfer of the responsibility to care to women who are already burdened by poverty and other caregiving responsibilities.
In one of the few studies in South Africa that has focused solely on the impact of caregiving on family caregivers, Orner (2006) investigated the psychosocial impacts on caregivers of caring for people living with AIDS in the home. This qualitative study was based on in-depth interviews with 45 primary caregivers, 43 of whom are female, in Khayelitsha, Gugulethu and Delft, in the Western Cape. Caregiving was found to place considerable practical and emotional demands on caregivers. This negatively impacted on their mental health, made worse by insufficient support, dire poverty and the added responsibilities of caring for other household members. Caring took place in a context of lack of basic resources, and this exacerbated the intensity of the caregiving process. Caregiving also impacted negatively on normal working and social patterns. Stigma and prejudice towards caregivers was common and worsened levels of stress. While the support received ranged widely, a lack of support was debilitating and not knowing how to access support structures was another source of stress for some caregivers.
Finally, Wallwork (2006) compared four different models of HBC in Durban and also found a disconnect between carers and the health system. Wallwork argued for HBC to become a formalized health service within the Department of Health, in order to reduce the burden on households.
3 LITERATURE REVIEW – MEASURING AND VALUING UNPAID CARE WORK TIME
The previous literature review highlighted the unpaid care work that women undertake within the home. Ogden, Esim and Grown (2006, p. 334) argue that making this unpaid work and the unpaid workers visible is of value to governments and policy makers “in order to … capture the benefits of these activities, but also to … enumerate their costs – so that the unpaid contributions of women to the productive economy can be acknowledged and compensated”. The most obvious way to make this work more visible is to measure the time spent undertaking it so that a monetary value can be placed on it. This chapter reviews the literature on methods used to measure and value time-use.