Children whose parents have died of HIV-related illnesses have often also lived through the deaths of others close to them: brothers and sisters, aunts and uncles, cousins, friends and, increasingly, grandparents. Their very will to live has often been undermined. If they are to grow and develop as human beings and as members of civil society, they need love and care and the opportunity to form and maintain emotional ties with adults. Their material and psychosocial needs will have to be met; their right to remain integral members of their communities and their legal rights may be at risk and need protection. Consideration can be given to the provision of services to all children within an area heavily affected by the epidemic rather than only to those whose parents have died of AIDS. The latter approach may lead to resentment and stigmatization of children who receive targeted assistance.
• Minimizing children’s psychological and emotional trauma. The grief and loss for all living within this epidemic can be overwhelming but may be particularly so for children who watch their family members die one after another5. Such children not only suffer emotional pain but may also experience long-term psychosocial distress. Grief and depression may be evident or they may be expressed through behavioural problems. Children need opportunities to express and come to terms with these losses. Loving care and support can help heal the pain. Play is another important way that children do this. Experience with traumatized Mozambican refugee children, and in villages in Masaka and Rakai districts in Uganda, has shown that community-based activities such as play groups can help children recover. Normalization of daily life, like continuing to attend school, is also important. Teachers, religious leaders, nurses, healers or other adults in the community can be trained to counsel and help children recover from trauma.
• Keeping survivors as integral members of their communities. This will necessitate attitudinal change where discrimination and stigma toward survivors exist. It will also require the provision of care and shelter within the children’s families or communities. One significant advantage of care within the children’s own community is that relationships can be maintained which will be important as the children grow older. Children cut off from these relationships will have no one to turn to when help is needed. Where discrimination and stigma cause the isolation or rejection of children whose parents have died of AIDS, political and community mobilization for the protection of their customary, legal, ethical and human rights will be particularly important.
• Basic material needs. Direct assistance is often required by affected families. Women in Kigali asked Caritas to help them continue to be able to care for their children as long as possible by providing a nutritious meal for them and their children each day and by treating the opportunistic infections that hindered their ability to care. TASO in Uganda6, WAMATA in Dar es Salaam and the Kagera region7 provide food and blankets and, at times, financial assistance. The basic needs of affected families need to be met on an ongoing basis.
• Education, training and employment creation. Formal education, vocational training, non-formal skills training and the provision of necessary tools and equipment can help children support themselves. In addition, such measures as public works programmes, revolving credit schemes and other measures to create employment can benefit children directly or through the families caring for them. Day care facilities, formally or informally arranged, can free time for work while ensuring that young children are cared for. Young people, who have lived through the trauma of this epidemic often have knowledge, skills and insights that could help other young people in similar situations. Opportunities could be created for them, for example, by apprenticing them to traditional healers or through working in outreach programmes to newly affected children.
• Children’s social and adolescent’s development needs. To grow and develop into an adult capable of constructive social interaction, children need to be nurtured and stimulated. Younger children, for example, develop best when they have an opportunity to establish an ongoing, caring relationship with one or more adults. Such developmental needs have important implications for the type of care appropriate to provide for children and adolescents whose parents have died. Family-based care in a child’s own community generally provides the best opportunities for promoting positive psychosocial development.
• Children’s and adolescent’s sexual development needs. Sexually active adolescents generally lack access to information services for sexually transmitted infections and to condoms, particularly sizes to fit boys. They also lack opportunities to discuss these issues with each other or others whom they respect. The Anti-AIDS clubs in Zambia or the discussion groups run by the Women and AIDS Support Network in Zimbabwe have shown that providing these opportunities can significantly change peer group sexual norms, expectations and behaviour.
Children and adolescents who have cared for and then watched the adults in their lives die one by one and who know that these deaths are linked to the expression of sexuality may well experience problems as they move into puberty and into adulthood. There is no precedent for the extent or types of these problems. Community workers, religious leaders and others will need to be aware of these possibilities and keep communities aware of what is happening.