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Publication Details

Reference
Akintola, Olagoke (2006) Community Responses to HIV/AIDS: The role of volunteers in home-based care for people living with HIV/AIDS in South Africa. CCS Grant Report : 1-33.

Summary
The HIV/AIDS epidemic is having a deleterious impact on the social and economic development of the most affected countries. Sub-Saharan Africa is home to 70% of infected persons worldwide. The South African Department of Health Estimates that 29.5% of pregnant women are living with AIDS (UNAIDS, 2004). KwaZuluNatal is the worst affected province in South Africa with a prevalence rate of 40.7% (DOH, 2004).

HIV/AIDS is the leading cause of death in many sub-Saharan Africa
countries including South Africa (UNAIDS, 2002). According to
Dorrington et al (2001) HIV/AIDS accounts for between 25%-40% of
deaths in South Africa. Although HIV/AIDS affects all sectors of the
society, studies have shown that the most severe effects occur at the level
of the household and communities (UNAIDS, 2000a; Barnett and
Whiteside, 2002, Akintola, 2004b). According to Loewenson and
Whiteside (1997), the household impact of HIV/AIDS has three stages,
namely illness, death and the longer-term consequences of AIDS
morbidity and mortality. Stover and Bollinger (1999) have documented a
range of potential impacts on households, which include the loss of
income (originating from reduced labour supply within the household or
from lower remittances of the person with HIV/AIDS, who is usually the
main breadwinner); increase in household expenditures for medical
expenses; decrease in household savings; permanent loss of income, as a
result of death or loss of a job; increase in funeral costs; the removal of
children from school in order to circumvent educational expenses; and
other members of the household, usually daughters and wives, may miss
school or work in order to take care of the sick.

Furthermore, there is evidence to suggest that the provision of care for
people living with HIV/AIDS accounts for a substantial part of the
household and community burden of HIV/AIDS and that the informal
caregivers carry a substantial part of the burden (UNAIDS, 2000, WHO,
2000, Barnett and Whiteside, 2002, Akintola, 2004a). The cost of caring
for people living with HIV/AIDS is enormous and difficult for affected
families to carry alone. Recent studies by Johnson et al (2002) in South
Africa showed that HIV/AIDS affected households spent 34% of their
monthly income on healthcare compared to the average of 4% spent by
households in the country. Yet many of the people living with HIV/AIDS
are dying and may not necessarily benefit from continued hospitalization
but need palliative care and support1. Meanwhile, many government health facilities do not have the capacity to cope with the large numbers
of people living with HIV/AIDS (PLWHAs) that daily seek care (DOH,
2001, Akintola, 2004b). In view of this, the South African government
issued a national guideline on home-based care in 2001, which was
intended to serve as a guide for the promotion of home-based care in the
country (DoH, 2001). Home care is defined 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 dignified death2 (DOH, 2001).

Consequent upon the issuance of this guideline, there has been an
increasing shift from hospital care to home-based care for PLWHAs in the
country occasioned by an increase in the ‘dehospitalization’ of HIV
positive patients from formal health facilities (Akintola 2004a). This has
tended to place the primary responsibilities for the care and support of
the sick on the immediate families and communities (Akintola, 2004a).
Yet studies have shown that many affected households are ill-equipped
to offer home-based (Akintola, 2004a). Further, a recent study conducted
in four South African provinces showed that only a few households have
access to any kind of support from government for home care and
terminally ill AIDS patients are usually discharged from hospitals
without access to palliative and terminal care and support (Steinberg et
al, 2002). Thus in many of the affected communities, community based
organizations (CBOs) have stepped in by mobilizing, recruiting and
providing training for community members who volunteer their services.
These volunteers thereafter assist households and communities to relieve
the burden of caring for people living with HIV/AIDS.

Although previous studies have documented forms of volunteering within
Church settings such as the Church based Manyanos (Holness, 1997))
none of these studies have focused specifically on the role played by
volunteer caregivers in home-based care within the context of HIV/AIDS.
Yet these volunteers form the backbone of many community care
programmes in South Africa (Russel and Schneider, 2000; Akintola,
2004a). Thus this study was carried out to understand and document
the role that volunteers play in home-based care for people living with
HIV/AIDS.

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