JULY 2000------------- THf SOUTHfRN AFRICAN JOURNAL OF HIV MfOICINf

CARE AND SUPPORT

geneous and unproblem-

atic entities, while little
thought is given to the

tasks involved in mobi-

lising them. This is

especially so in South

Africa, where house-
holds and communities

have been systematically

disrupted by Apartheid.
Moreover, evaluations in
various southern African

countries have dispelled

the idea that home-based
care is necessarily a quick

fix and a cheap alter-

native to hospital-based

care. 5

Despite these consid-

erable challenges, a num-
ber of non-governmental

organisation (NGOl, com-

munity and religious-based

projects, attempting to

grapple with HIV/AIDS care and support needs at
community level, have emerged across South Africa. A

review of these projects was conducted during the latter

half of 1999, the aim of which was to identify the models

of community-based HIV/AIDS activities being

implemented, the challenges facing them and the possible

role of government in promoting such activities.

This article gives findings from the review.

The review methods included a literature review, 68

key informant interviews, and visits to 20 projects across

the country. Key informants and projects were identified
through a snowball sampling strategy, starting with a list

of 15 contacts known to the researchers.

We defined AIDS community-based care and support

as being all AIDS activities that are based outside con-

ventional health facilities (hospital, clinic, health centre),

but which may have linkages with the formal health and

welfare sector; and all AIDS activities that address any

aspect of the 'continuum of care and support', from time of

infection through to death and impact on survivors.

Over the past few years,

the previously largely
silent HIV epidemic in

South Africa has shifted

to a visible AIDS epi-
demic. The impact on

health services, families

and communities is emer-
ging rapidly. In 1997,
20% of all patients ad-

mitted to the paediatric

wards at Chris Hani Bara-

gwanath Hospital were

HIV-infected,' and in

1998, more than half
(54%) of the admissions

to the medical wards at

King Edward VIIl Hos-

pital in Durban were HIV-

related.' By the year

2005, conservative pre-

dictions are that there
will be nearly 1 million

children orphaned by

AIDS in the country,' clearly overwhelming the current

capacity of the welfare system.

In an attempt to deal with impacts, it is common

practice for healthcare facilities to ration services to
people with HIV. Much of the burden of HIV care in

developing countries is now falling onto households and

communities, and in South Africa home-based care has

become a national policy priority.

Any discussion of AIDS care and support there-

fore inevitably turns to a consideration of how to achieve

greater community participation, both in minimising im-

pacts on the formal health sector and in meeting the

needs of people infected and affected by HIV. Community

mobilisation is often described as the key to the sus-

tainability and success of care and support strategies.'

However, decades of experience in implementing pri-

mary health care have shown that meaningful community

involvement in health services is not easy to develop and

sustain, and is especially hard to institutionalise on a

wide scale. Communities are often assumed to be homo-

Helen Schneider, ME ChB, MMed, Michele Russell, BA, MSW; MS
Centre for Health Policy, University of the Wir.oatersrand, Johannesburg

MODELS OF COMMUNITY-BASED
HIV/AIDS CARE AND SUPPORT

IN SOUTH AFRICA



THf SOUTHtRN AFRICAN JOURNAL OF HIV MfOICINf ------------- JULY 2000

Models of care and support in South Africa

Although it was not possible to quantify the presence of
community-based services across the country, it was very
evident from discussions and visits that coverage by

community care and support for people with AIDS
(PWAs) is very patchy, and most often lacking. However,

in almost all parts of the country evidence could be found
of attempts to initiate activities and programmes. Many

initiatives did not refer to themselves as 'AIDS'
organisations, but rather as \palliative care' projects, and
many were still in their infancy, operating with little

external support and with uncertain prospects of
sustainability. Some have benefited from contact with, and

the materials of, projects in other parts of southern
Africa, such as the Family AIDS Caring Trust (FACT) in

Mutare, Zimbabwe,' and the AIDS Support Organisation
<TASQ) in Uganda!

Five 'general' and four orphan care and support

models were identified and are summarised in Table I.

GENERAL MODELS TYPE OF ACTIVITY

1. Funding, technical assistance Umbrella structures
and support programmes channelling funds, providing

technical assistance and
monitoring and evaluating
functions

2. Advocacy and community Community structures to
mobilisation protect the rights of

individuals and facilitate
access to health and welfare
services and schooling

3. Drop-in centres/support Physical facility that
groups provides a space to run

support group and income -
generating activities

4. Home visiting programmes Home visiting, assistance
with chores and
psychological support

5. Comprehensive home-based Package involving palliative
care care and well-developed

referral network to health
facilities and welfare
agencies

MODELS FOR PLACEMENT OF ORPHANS
Extended family
Child-headed households
'Create a Family' or 'Cluster Foster Care'
Placing responsible adults in the homes of orphaned children

FUNDING, TECHNICAL ASSISTANCE AND
SUPPORT PROGRAMMES

Two examples of funding, technical assistance and sup-

port programmes encountered in the review were the

AIDS Foundation in KwaZulu-Natal and the Mpumalanga

Project Support Association (M PSAl. These organis-

ations are NGOs providing a support function to

community-based organisations (CBOs) with regard to

mobilising and channelling funds, providing technical

assistance and training for home-based care, project

management, report writing, and project monitoring and

evaluation. Such structures could be one vehicle for

public-NGO partnerships to promote the development
of community-based action, and could also play a co-
ordination and standard-setting role.

ADVOCACY AND COMMUNITY
MOBILISATION PROJECTS

An example of this is the Thandanani Project in
Pietermaritzburg. Thandanani has created Community

Child Care Committees (CCCCs) comprised of community

leaders and residents, whose task is to identify children

who are abandoned, abused or at risk of being orphaned.
The CCCC will not only protect the rights of the child but

will also help in accessing child welfare grants, medical

and home-based care and schooling. The CCCCs do not

themselves provide services, but have created linkages
and referral relationships with social, medical, nutritional,

child welfare and other support service providers.
Community mobilisation programmes are often per-

ceived as being easy to develop. However, they are a time-

consuming endeavour requiring specific skills in the areas

of motivating and sustaining community involvement,

developing partnerships and linkages, and creating

opportunities where all participants feel equally respected

and able to make a valued contribution.

DROP-IN CENTRES/SUPPORT GROUPS

This model is perhaps the most common form of
community-based care and support. It consists of a simple

facility where people can receive HIV counselling and

education, and can participate in support group activities.
Most providers felt that the traditional support group

model centred on verbal problem exploration and psycho-

social counselling was not sufficient, and combined it with

an income-generating activity (lGAl. This has a twofold

benefit - participants are engaged in an activity that

facilitates conversation, and the activity has the potential

to generate some income. The IGA activities included

beaded ribbons, paper bowls, hats from plastic bags,

tablecloths, gardening, chicken farming and making

foodstuffs. In practice very few projects actually manage

to generate income, and as one person put it, 'I have a

room full of things people have made but we can't sell

them. They're just packed in there.' One project had

acquired maize-grinding and fence-making machines,

an oven for baking bread, juice-making equipment and

battery-recharging facilities. With the income generated

they were able to fund the activities of the drop-in centre.

Support groups were reported to build self-confidence,

help people cope with their diagnosis, overcome depres-

sion and create social networks for people who are

isolated. Bonds formed outside of the group often result in

sick members being assisted with small chores. Through

support group activities, HIV-infected adults can also be

engaged in discussions about the future placement of their



JULY 2000------------- m SOUTHHlN AcRICAN JOURNAL Of HV MEDICI t

children, and can acquire the documentation necessary to

access welfare grants.

HOME VISITING

Drop-in centre activities may include a home or \friendly'
visiting service. Volunteers visit patients in their homes

and spend time talking and educating patients and their

family about basic care needs. They also provide support

with cooking, cleaning and helping with errands, including

accompanying patients to health facilities. They may also

arrange access to food parceis and other material

support.

COMPREHENSIVE HOME·BASED CARE

In addition to the above, comprehensive home-based care

programmes provide varying degrees of palliative care.

These programmes tend to be run by more established

NGOs (such as Hospice, the Red Cross Society and

church-linked groups). A number of such relatively large

projects, catering for hundreds as opposed to tens of

clientsl were identified in the review.
Training of caregivers includes supportive coun-

selling, cleaning and dressing of wounds, oral hygiene,

supervision of drug taking and in certain instances

necrotic wound care/ pain management and diagnosis of
opportunistic infections. The package of services also

often includes OOTS (directly observed treatment, short-

course) for tuberculosis. At least two projects had been

trained in and adopted the Zimbabwean 'FACT' model.

This has a strong spiritual component, and many of the

volunteers are recruited from the church.

All projects had invested considerable energy in

creating partnerships and referral networks. Relation-

ships are formed with the local welfare department,

schools, businesses, hospitals, respite care facilities and
clinics. Building these partnerships is time-consuming.

However, once created, the package of services that can

be offered to clients is comprehensive.

Care of orphans

Many community-based HIVIAIDS care and support
programmes visited had been confronted with the needs
of orphaned children, and felt they had no option but to
address these needs.

The models of care and support for orphaned children

included:

1. The extended family approach: a family member
is identified to care for orphans after death of the

parents. Often this family member is a grandmother.

2. Child-headed househoids: When parents die and

there is a sibling 15 years or older, social services

may work with that chiid to keep the family

together. The younger siblings remain in their

home, with the older sibling acting as a parent.

They may receive support from volunteers who

will visit the household to ensure that they are

coping and to resolve problems.

3. 'Create a Family' or 'Cluster Foster Care.' This

intervention, based in Durban, involves identifying
a surrogate mother, who is hired to care for six
orphans in the community. She is provided with

a home, in which they all live, and she raises the
children as though they were her own. With the

assistance of the Durban Child Welfare Society,
foster care grants are accessed to pay for school

fees and uniforms, and the foster parent receives
a stipend. This model serves as a job creation

opportunity for women.

4. Placing adults (usually older women) in the homes
of orphaned children: This approach has worked
successfully in the Masoyi Project (MpumalangaJ.

This approach benefits both the children and the

adult, as often the latter lives in the poorest of
housing (mud shacks) while the children tend

to live in better quality brick houses.

The key tasks in child care and support programmes

are accessing welfare benefits (child care and foster

grants), including the documents required for grants,

maintaining children in school, and ensuring that basic

necessities, such as food and clothes, are provided.

Challenges to community-based
care and support

MANAGING AVOLUNTEER BASE

With a few notable exceptions, most organisations had

only one or two paid staff members, with the bulk of

services provided by volunteers, who mayor may not

receive a stipend. Recruiting and maintaining commit-

ment from volunteers is one of the main challenges facing

projects and many programme managers admitted to

struggling with this aspect. Interviewees reported high

turnovers of volunteers who, once trained, moved on to
other opportunities, dropped out, or were unreliable.

Conversely, if a significant stipend was provided, a major

concern was its sustainability over the long term.

Non-financial incentives, such as a sense of belonging

a supportive work environment opportunities to gain

skills and passing a rigorous screening process all appear

to be crucial to maintaining volunteer commitment.

As one project interviewee put it: 'The volunteers in
these projects undergo a 4 to 6 month training, and not

everyone makes it ...'

ORGANISATIONAL STRUCTURE, STAFF
CAPACITY AND ACCESS TO RESOURCES

Project readiness and ability to provide services differed

widely among the projects visited. Programmes started

by and within poor communities seemed to have the most

difficulty developing strong and sustainable programmes.

Although many of these community-based organisations

had great intentions, they did not have sufficient internal

capacity to implement those ideas. They also lacked



THf SOUTHtRN AFRICAN JOURNAL Of HIV MfOICINE ------------- JULY 2000

resources. In many cases, the project managers accessed
some initial funding (such as pension payouts) to get

started, but experienced difficulty as this money ran out.

They did not have sufficient knowledge on how to

maintain documentation and how to account fori or
manage, funds. One retired nurse commented: \I'm a
nurse ~ not an administrator. I don't know about

budgeting and administration. [know how to take care

of people.' Another nurse voiced her frustration: \We
work from hand to mouth.'

The larger NGOs with a sizeable infrastructure,

history of programme development, and connections with

players locally and internationally, appeared to be in a

much better position. They were able to provide services

over a larger area, at a higher level, and possibly with

greater efficiency <through economies of scalel than

some of the smaller projects visited.

ABILITY TO FORM LINKAGES
AND PARTNERSHIPS

Programmes that were able to develop partnerships or

referral relationships with other service and care

agencies were more successful than those that did not.

Relationships with welfare agencies, hospitals and clinics

were cited as being particularly important. Several

projects had agreements with clinic and hospital

providers, facilitating admissions to hospital or access

to prescriptions and medications. In some cases, prog-
rammes also negotiated supplies of antiseptic solution,

gloves, bandages and other home~based care necessities

from hospital and clinic partners, in exchange for

providing care to discharged patients in the community.

Some projects were also able to engage local businesses

to provide food parcels, soup kitchens, transport or office

supplies.

LACK OF STANDARDISATION

There was little standardisation across projects with

regard to training and the quality of services provided.

Some programrnes sent their volunteers and staff to

formally established training programmes, while others

conducted their own in~house training. Hence, the content

and quality of care varied enormously.

Conclusions

While a rich base of experience in community~based care

and support is being developed in South Africa, access to

these services is still far from universal. Large~scale

technical assistance and capacity~building programmes,

networking and co~ordinating opportunities, development

and dissemination of standards/guidelines, and the

establishment of monitoring and evaluation systems are

all essential to the creation of an effective and sustain-

able community~based care and support movement. There

are still many unanswered questions as to the feasibility

of extending community~based care and support

activities to all parts of the country, both in terms of

being able to mobilise activities on a wide scale and the

costs of programmes.
It is clear that government has an important role

to play in supporting and facilitating wider access to

community-based care and support, and in ensuring a
basic health and welfare safety net. Perhaps the biggest

challenge will be the ability to form meaningful partner-

ships between government at all levels and the non-

governmental sector. This may necessitate a paradigm

shift in the minds of many health and welfare profess-

ionals, 'from the assumption that counselling, treatment

and care of patients can only be done by highly technical

personnel, to an appreciation that in every family and

community there is some level of counselling and caring.

Scientists must cease perceiving themselves as cust-

odians but... rather as facilitators. llo

REFERENCES

1. Zwi KJ, Pettifor JM, Soderlund RN. Paediatric hospital

admissions at a South African urban regional hospital: the impact

of HIV 1992 - 1997. Ann Trop Paediatr 1999; 19: 135-142.

2. Colvin M, Kleinschmidt r. The Impact of HIV and AIDS on the
medical wards of a tertiary hospital in KwaZulu-Natal, South

Africa. Draft report prepared for the Department of Health.

Durban: Medical Research Council <Undated).

3. Abdool Karim Q, Matthews C, Gutmacher S, Wilkinson 0, Abdool

Karim SS. HIV/AIDS and STOs in South Africa. Appendix 15,

Volume 3. In: Frolich J, ed. Comprehensive Report: The South

African National STD/HIV/AIDS Review 4 ~ 18 July 1997.

Pretoria: Medica! Research Council, 1997.

4. Mutangadura G, Mukurazita 0, Jackson H. A Review of

Household and Community Responses to the HIV/AIDS

Epidemic in the Rural Areas of sub-Saharan Africa. Geneva:

UNAlDS, 1999.

5. Hansen K, Woelk G, Jackson H, et al. The cost of home-based

care for HIVJAIDS patients in Zimbabwe. AIDS Care 1998; 10:

757-758.

6. Foster G, Nyaruwa T, Muchaneta L. Increased scope and

decreased costs of home care. SAFAIDS News 1999; 70): 6-9.

7. Kaleeba N, Kalibala S, Kaseje M, et al. Participatory evaluation

of counselling, medical and social services of The AIDS Support

Organisation (TASOl in Uganda. AIDS Care 1997; 9(1): 13-26.

8. Mhloyi M. Care in Africa. Plenary address to the 11th

International Conference on AIDS and STDs in Africa. Lusaka,

16 - 21 September 1999.