Most parents come to know they are HIV-infected when one of them or one of their children is clinically diagnosed with HIV-related illnesses. The earlier a parent’s infection status is known, the more time he or she will have to plan for the children’s future, in particular to find another family or person who can care for and shelter them. The parent will also have more time to pass on their skills and knowledge to them, to help the children be able to support themselves. Knowing their infection status when they are well will help the parents prepare their children and themselves emotionally for their deaths. The longer a parent can work and the longer he or she can be helped to stay well and nurture and raise the children, the less pain and trauma the children will experience.

Components of this programme element could include:

• Access to voluntary, confidential and affordable counselling and testing for adults and the motivation to use it. This would allow parents more time to plan for their own and their children’s future. Infected parents often want to seek advice on how and when to tell this to their children. Supportive services and counselling can help parents maintain a nurturing home environment for their children for as long as possible and to find future homes for them. Access to testing and counselling can also assist people in making decisions about whether they wish to have more children.

• Disclosure with counselling of a child’s infection to both parents. The Women and AIDS Support Network Conference in Zimbabwe in 1989 stressed the importance of both parents being informed at the same time if that child is infected and that both receive caring counselling regarding their child’s and their own HIV status ¹. In some cases where a child has been clinically diagnosed with AIDS and only the mother has been informed, the father has blamed the mother and abandoned her and the sick child.

• Continued employment. HIV-infected people who remain fit to work have the right to remain employed. If this right is denied them, their children will suffer.

• Simple treatment of opportunistic infections. Experience in Masaka, Uganda and Kigali, Rwanda has shown that, for many HIV-infected parents, treatment of conditions such as thrush, skin infection, diarrhoea and fever is important since it allows them to continue to work, to nurture their children and to die with dignity². Providing such treatment can often help parents to remain with their children for a longer period. The parent’s suffering is eased and the children’s memories of their parent’s dying can be made much less traumatic. Counselling and access to appropriate low-cost or subsidized medicines may lessen the problem of families exhausting their resources in a futile search for a “cure”.

• Passing on to children production- and income-generating skills. In Uganda, the Kitovu Hospital home care team encourages parents, once they know they have been infected with HIV, to pass their production- and income-earning skills on to their children3. In addition to helping the children to become economically independent, it can also be of emotional benefit to an infected parent who, through teaching them these skills, can do something to help their children.

• Planning for children’s future care. The emotional stress of both parents and their children can be eased through parents planning for the future care and support of their children. The importance of this has been stressed repeatedly by infected women in all parts of the developed and developing world. Once the future guardian is identified, financial, legal and other arrangements can be made and this person or family involved in planning for the children’s future.

• Protection of children’s inheritance and other legal rights. The children’s continuing access to the family house, land and goods is critical to their survival and well-being. Specific steps appropriate to traditional inheritance customs and/or national law may need to be taken by parents before their deaths. Discussing inheritance matters with clan elders and/or preparing and registering a will are examples. Parents need to be informed about their legal rights in relation to property ownership and how this can be passed on to the surviving spouse and children.

• Prevention of infection while caring for the sick. The experience of the home care and counselling teams of Chikankata Hospital in rural Zambia shows that simple techniques can minimize the likelihood of children or other family members being infected while caring for the sick and dying⁴.