Unpaid HIV/AIDS Care in Southern Africa: Forms, Context, and Implications

Abstract

Across southern Africa, policy-makers are promoting home-based care for HIV/AIDS patients as a cheaper alternative to hospital care. However, cost studies have not sufficiently considered the costs and benefits to all stakeholders in home-based care.1 Drawing on existing literature, this study shows that available data are grossly inadequate for a comprehensive assessment of the cost-effectiveness of home-based care. Previous studies have largely ignored many of the costs associated with home-based care, which is currently borne by unpaid caregivers – predominantly women – as well as the value of their unpaid labor. This study questions the assumption that home-based care is cheaper than hospital care and the wisdom of enacting home-based care policies. This study argues that conclusions about the cheaper form of care can be drawn only by assessing all of the costs, benefits, and utility derived by all stakeholders in home-based care.

Keywords:

• Care cost
• unpaid care
• home-based care
• PLWHA
• caregiving
• HIV/AIDS
• JEL Codes: H31, I18, J17

Acknowledgments

I am grateful to the reviewers for their useful comments on earlier versions of this contribution. I am also very thankful to the guest editors for their thoughtful comments and insightful feedback. The writing of this article was supported in part by a postdoctoral research grant from the research office of the University of KwaZuluNatal.

Notes

Cost studies estimate the cost-effectiveness of home-based care compared with institutional care.

I adopt a broad definition of people living with HIV/AIDS to include all people infected with HIV/AIDS notwithstanding the stage of the disease.

According to the World Health Organization (2002) home-based care refers to the provision of health services by formal and informal caregivers in the home to restore and maintain a person's maximum level of comfort, function, and health including care toward dignified death.

Although different countries in the region have drawn up separate policies, they are very similar and aim to achieve the same purpose: the reduction of patients' length of stay in hospital.

Studies show that PLWHA make up a substantial proportion of public health facility users across sub-Saharan Africa.

Susan Fox, Cally Fawcett, Kevin Kelly, and Pumla Ntlabati 2002; Kristian Hansen, Godfrey Woelk, Helen Jackson, Russell Kerkhoven, Norah Manjonjori, Patricia Maramba, Jane Mutambirwa, Ellen Ndimande, and E. Vera 1998; Gillian Moalosi, Katherine Floyd, Jabulani Phatshwane, Themba Moeti, Nancy Binkin, and Thomas Kenyon 2003. Moalosi et al. (2003) study the cost-effectiveness of home-based versus hospital care for chronically ill tuberculosis patients, focusing on only some components of care associated with HIV/AIDS.

Southern African Development Community is the umbrella association for countries in southern Africa and has fourteen member countries.

In order to retrieve published articles for the review, I conducted a keyword search on the Internet using various search engines, including Medline, Aidsearch, Academic Search Premier, Ebscohost, and Google Scholar. To search for unpublished articles, reports of organizations and other policy documents, I used Google and Yahoo search engines. Both searches used different combinations of the following Keywords home-based care, home-care, AIDS care, unpaid care, community-based care, informal AIDS care, social, economic, impact, households and family. In addition, I solicited unpublished materials from organizations and colleagues working on home-based care. Given the paucity of data on home-based care, I left the criteria for inclusion of studies very flexible.

Two of the studies reviewed sampled caregivers for people with HIV/AIDS as well as for patients with other chronic illnesses. (R. Ndaba-Mbata and Esther Salang Selioilwe 2000; Elizabeth Lindsey, Miriam Hirschfeld, and Sheila Tlou 2003: 493).

Given that antiretroviral therapy is not yet available to most PLWHA in southern Africa, PLWHA may require care at different times during the illness trajectory; hence the use of the term patients.

A South African study found that 82 percent of primary caregivers were immediate family members (Rick Holman, Catherine Searle, Eka Esu-Williams, Mark Aguirre, Sibongile Mafata, Farshid Meidany, Corrie Osthuizen, and Liz Towel 2005a).

Home-based care organization is a broad term that includes faith-based organizations, community-based organizations, and non-governmental organizations providing home-based care services.

I elaborate on this point in the section on costs of unpaid care.

The government of South Africa provides various grants for different vulnerable groups: old age grants for the elderly; childcare grants for children who have poor parents, foster care grants for foster children, and disability grants for disabled people.

Godfrey Woelk, Helen Jackson, Russell Kerkhoven, Kristian Hansen, (Norah) Manjonjori, Patricia Maramba, Jane Mutambirwa, Ellen Ndimande, and E. Vera 1995; Steinberg et al. 2002; Lindsey, Hirschfeld, and Tlou 2003; Sarah Bowsky 2004; Chimwaza and Watkins 2004; HelpAge International 2005.

I am not suggesting that private paid care is an organized or widespread practice in these countries. Indeed, little is to be found on the use of paid care for persons living with HIV/AIDS in southern Africa. However, a few studies, mainly on South Africa, document that some affected households employ the services of home-based caregivers in return for financial remuneration (see Steinberg et al. 2002; Community Agency for Social Enquiry [CASE] 2005).

The reasons for the high prevalence of female-headed households include non-marriage, high death rates as a result of AIDS, and high divorce rates (Eleanor Preston-Whyte 1978; Steinberg et al. 2002; Lindsey, Hirschfeld, and Tlou 2003; Chimwaza and Watkins 2004; Homan et al. 2005a; Akintola 2006a; Philippe Denis and Radikobo Ntsimane 2006).

Robson 2000; Jeff Gow and Chris Desmond 2002; Lindsey, Hirschfeld, and Tlou 2003; Chimwaza and Watkins 2004; Akintola 2006a; Wiegers, Curry, Garbero, and Hourihan 2006.

The different models of home-based care make use of volunteers to varying degrees and provide different levels of services and resources to their patients. For a fuller discussion of these different models, see Russel and Schneider 2000; Akintola 2004a; Homan et al. 2005; Naidu 2005; and Busisiwe P. Ncama 2005.

There is anecdotal evidence in South Africa to suggest that some volunteers pay for their own training in order to qualify for government positions (Akintola 2006b).

Given the prevalence of HIV/AIDS and the need for care, acquisition of skills is potentially remunerative for the short and long term.

Caregivers who are employed or involved in subsistence production will, in addition to loss of time from employment or subsistence production, still lose time for ‘leisure’ and home production.

Although volunteers may not enjoy direct financial rewards for providing care, the society is able to enjoy some savings in the cost of care. The training provided could therefore be thought of as an investment for the public good.

The converse could also be the case. Caregivers who are unemployed could miss potential opportunities for human capital investments (for example, other education and training opportunities) while providing care, in which case the caring skills acquired may not compensate for the cost of time lost in caregiving.

Note that the cost of care varies with the severity and duration of illness, size of affected family, and quality of care provided.

Social capital refers to the norms and networks that enable collective action. It encompasses institutions, relationships, and customs that shape the quality and quantity of a society's social interactions. It has five key dimensions: groups and networks, trust and solidarity, collective action and cooperation, social cohesion and inclusion, and information and communication (World Bank 2000).