3.6 Access to social support

An advantage of people knowing their HIV status is that it allows seropositive people and their families to benefit from social support services at an earlier stage. This may help them to cope with their HIV infection and to have a better quality of life.

In many industrialized countries there is a wide range of social support services available for PLHA. In the United Kingdom people with HIV have statutory rights to certain services and there are a large number of nongovernmental organizations (NGOs) that provide material and support services for people with HIV along with their families and dependants. It can therefore be a considerable advantage to be aware of one’s status in order to be able to have access to these services at an early stage. Terrence Higgins Trust¹⁴⁴, a United Kingdom NGO, provides a broad scope of material and support services for people with HIV.

In middle-income countries with lower levels of HIV this is a more feasible option. For example, people with HIV in Russia have statutory rights to housing and other services (Russia Federal law, 1999¹⁴⁵).

In high-prevalence developing countries, although the needs for social support services are often much greater, resources are frequently inadequate. Some developing countries have policies such as offering free or subsidized services to people with HIV, but because of the overwhelming demand they may be difficult to implement. However, where VCT services have a close link to social support, these have been shown to be popular in many settings. In Uganda, TASO has been providing comprehensive support for HIV-infected and affected people since 1987. The participatory evaluation of the service demonstrated that there were many material needs of PLHA following testing. There are also numerous examples of NGOs and religious/church groups offering support services for people with HIV. Problems of coverage and sustainability are common.

In the Central African Republic, out of 2 800 clients attending a VCT cen-tre approximately 350 were seropositive. Of these, 80% were referred for social support (Sehonou et al., 1999¹⁴⁶). (Antenatal testing from sentinel survey sites in the country’s capital Bangui revealed a seroprevalence of 12-30%).

Material support to PLHAs and their families

Many of the countries that are most affected by HIV are also experiencing severe economic hardship, and needs assessments often reveal that the most pressing requirement for PLHAs is material support. In Rwanda, seropositive women stated their most urgent needs as being food, housing and money (Keogh et al., 1994¹⁴⁷). Linking material assistance to VCT services is controversial. Although it is popular among VCT service attendees and encourages the use of VCT services, it is often unsustainable and may lead to dependence and unmet expectations when supplies run out or donor support is limited (Williams and Kalinaki, 1999¹⁴⁸).

At TASO a third of clients and family care-givers considered financial assistance their main need. Although basic foodstuffs (e.g. rice, oil) are sometimes available, supplies have proved to be irregular and dependent on donations.

When the VCT service was set up in Lusaka, Zambia, seropositive clients were eligible for maize meal donated by the World Food Programme (WFP). This was a very popular service. The counsellors felt that they had something to offer people who tested seropositive. Widows with HIV, in particular, were often poor and supplies were welcome to help feed their children. However, this service was stopped when the WFP changed its policy, creating despondency among clients and counsellors. In the Kara study, the majority of people interviewed had not discussed “Public Welfare” issues with their counsellor. This is understandable because, practically, there is very little available. The total social welfare budget for Zambia for 1997 was US$ 634 000 (total population approximately 9 million). The fund is targeted at unsupported women, the sick, elderly people and people with disabilities. In 1996, less than 150 000 people had any contact with the social welfare services. Obtaining social welfare is cumbersome and involves assessment by the District Social Welfare Officer. This inevitably means travelling to the office and long waits for often no gains, as the criteria for qualifying for assistance are often vague and arbitrary.

Another study from Zambia also found that material needs (e.g. provision of basic food items and financial assistance for school children) were a high priority for people who tested seropositive, but there were few resources available to meet these needs (Hamavhwa et al., 1998¹⁴⁹).

Skills training and small loans

Some people with HIV experience problems with employment because of:

· Irregular attendance as a result of intermittent ill health.

· Employment-related HIV testing. Some companies require employees to undergo HIV testing before they can take up a position or continue in employment.

· Discrimination or abuse by colleagues or employers.

· Women who lose their husbands as a result of HIV may also relinquish their home and financial security.

With a view to addressing these problems some VCT centres refer people who test seropositive to skills training workshops. Skills training for seropositive people following VCT has been running in Zambia since 1992. It is popular and provides a supportive environment for people coping with their HIV infection (Baggaley et al., 1995¹⁵⁰). All the current trainers were originally trainees who joined the project following VCT, and some of the trainees have gone on to set up viable small businesses.

TASO skills training has also been an integral part of services available for people following VCT. Although only 8.6% of those attending TASO attended the day cen-tre, 95.2% said that they benefited from sharing experiences as well as from the emotional support of other PLHAs and 84.1% said that they benefited from the skills training. The majority of day-centre attendees were women (81%) and many were widows. In the TASO evaluation 60% of those interviewed mentioned the need for capital to start income-generating projects. When loans were made available, however, only 12% repaid them.

In Kenya, women attending VCT associated with a MTCT project were able to take part in income-generation projects and received help and information to improve the nutritional status of their children (Lukandwa et al., 1998¹⁵¹).

Support for children of PLHAs

The TASO evaluation also identified school fee payment for needy children of PLHAs as a priority. Initially, TASO provided school fees for 35% of children assessed as needing assistance. However it was realized that this was only a short-term option as ongoing funding for this activity was not available. Other studies have demonstrated the importance of providing counselling for children of PLHAand orphans to help them cope better and prepare for the death of their parent/s (Krabbendam et al., 1998¹⁵², Nanono Namatovu et al., 2000¹⁵³).