The local chief Hanjalika and headmen made it possible for SAPEP staff and fieldworkers to have discussions with communities as a whole, and separate discussions with affected groups, such as orphans, widows, the sick and caregivers. The discussions and interviews confirmed the existence of stigma and discrimination, and showed interesting differences between the perceptions of communities and affected groups.

Discussions with the whole community stressed the duty of families and communities to look after their members: as long as there are relatives, orphans will be looked after, and institutionalisation of orphans is unacceptable, despite the added economical burden on families. Also, the sick will be cared for despite poor knowledge and a poor economic situation.

Stigma was often denied by the community, but the way orphans and widows were discussed as burdens and a shame to the community indicated the undercurrents within the community. As HIV/AIDS is believed to be caused by immoral behaviour it spoils the name of the family, clan and tribe. Orphans are considered a continuous reminder of the "bad" behaviour of their parents.

Orphans: suffering and coping

Stigma and discrimination were confirmed in discussions with orphans, who indicated they were made accountable for the fact that their parents were HIV-infected: "We are called names, like dogs, and many of us are treated like slaves and perceived as a burden". Although traditions require orphans to be cared for, many orphans felt that the additional (financial) burden was often too big for their families. Some orphans talked about being sent away to find a job so that the family could eat without them, and only cast-off clothes are given to them. Formal education is often out of the question. In most of the cases, boys would not receive the traditional help from their relatives to get a lobola (dowry) together to marry; while girls often indicated abuse by relatives.

However, orphans indicated that stigmatisation by the community and the lack of opportunity to come to terms with the loss of their parents was much more painful than going hungry, without decent clothing, or lack of schooling. This has even led to cases of suicide. A frequent mechanism to cope with the lack of support and discrimination for boys is to go stealing, while girls sell their bodies, sometimes for less than 20 dollar cents with a condom, and 80 dollar cents unprotected. When boys become men, they try to get permanent or temporary employment on nearby commercial farms.

Other affected groups

Discussions with widows revealed stigma and discrimination, and the lack of a support system for them in the community. Widows are told to go back to their relatives. When lobola has been paid, children belong to the husband's family. As a result, families are torn apart on a man's death as head of the household. Children indicated that they suffered greatly through the separation from their mother, brothers and sisters. Traditions such as widow inheritance and
sexual cleansing (ritual sexual intercourse with a male relative of the deceased) affected the children badly and left deep scars.

Discussions with HIV-positive sick people, further confirmed the existence of stigma and discrimination. When modern medicines fail, the traditional healer is consulted. This can be costly and affect the economic situation of the whole family. Often the sick hide, as they fear stigmatisation by the community.

Caregivers may spend so much time in nursing that care for the rest of the family and food production become impossible.

Involving traditional leaders

The PRA has shown that present coping mechanisms are self-destructive. This points to the need to strengthen the community's capacity to support and cope with the sick, orphans and others affected. Orphans need to be supported to go through their mourning process and come to terms with their bereavement. Activities such as holiday camps, Anti-AIDS Club activities, and counselling can help. However, it is important not to single out orphans in the community through material gifts and sponsorships, as this will encourage stigmatisation. Rather, the whole community needs social and economic support to address the problem of community members infected and affected by HIV/AIDS. Cooperation and support of the traditional leadership is absolutely necessary to set this process in motion.

As a result of the PRA, SAPEP, together with the community, has decided to address stigma and discrimination, starting with a workshop on all aspects of HIV/AIDS for traditional leaders and community discussions initiated by Chief Hanjalika.