September 2000

Many organizations provide support services to children affected by AIDS in East and Southern Africa, such as payment of school fees, supplementary feeding, medical care, home visits, and vocational training. Despite their importance in a region where millions of children are orphaned, however, few of these programs have been evaluated. In Uganda, Horizons, Makerere University, and PLAN International are collaborating, to assess the impact of an orphan support program on the physical, educational, and emotional wellbeing of children. They are also studying a modified approach in which children are reached before the death of the parent through a program called succession planning. This experimental intervention includes helping parents write wills and appoint guardians, child and adult counseling, creation of family “memory books,” and other services to promote long-term child wellbeing. The baseline sample includes 353 parents who have tested positive for HIV, 495 children of people living with HIV/ AIDS (PLHA), 232 orphaned children, and 326 designated and current guardians.

Key Baseline Findings

The impact of adult illness on children starts when a parent is diagnosed or falls ill with HIV/AIDS. Prior research demonstrates that children orphaned by AIDS suffer physical, educational, and emotional set-backs. Baseline data from the current study demonstrate that these setbacks begin before parental death. For example, older children of PLHA (n = 181, ages 13-18) report a decline in school attendance (26 percent) and performance (28 percent). They also have more household responsibilities, including caring for younger siblings and sick adults. When asked to explain the link between parental illness and educational setbacks, older children cite not only their household responsibilities, but also their own psychosocial distress and their families’ declining ability to afford school fees.

Property grabbing is widespread, with women and children especially vulnerable. Among widows (n = 204) in this study, 29 percent say that property was taken from them when their husbands died. Similarly, 21 percent of older orphans (n = 105, ages 13-18) report personal experiences with property grabbing. This phenomenon further undermines the livelihood of households already weakened by the loss of adult breadwinners. Despite concerns about property grabbing, only 10 percent of parents in this study have prepared written wills, and those who have are still worried about their property.

Unfortunately, many guardians are themselves infected with HIV/AIDS. Of the 51 guardians in this study who know their serostatus, fully a third report that they are HIV-positive. Among parents who have not appointed a guardian, some report that the person they have in mind is HIV-positive, old, sick, or “likely to die before I do.” In fact, 40 percent of the HIV-positive parents in the sample also serve as guardians. With elderly relatives and others in poor health comprising the “safety net,” it is likely that many affected children will experience not one or two but a series of caregivers, households, and deaths.

Most older children want parents to tell them the truth about being HIV-positive. Among older orphans who know that their parent died of AIDS, most say that parents should discuss this with their children. Although parents are also predominantly in favor of disclosing their HIV status to their children, only 43 percent have done so. Parents find this subject difficult to discuss. However, reasons expressed by both parents and children in favor of disclosure highlight the importance of being honest, talking about prevention, and being able to plan for the future.

The greatest need expressed by all study participants is for material support. When asked what they need to provide for their children and foster children, parents and guardians are most likely to identify material assistance or support to improve income.

Program Implications

Program managers should consider reaching children in AIDS-affected families early, rather than waiting until they are orphaned. One approach is to link orphan support and succession planning with existing care and support programs for PLHA. By addressing a top concern expressed by PLHA—the future of their children—succession planning has much to offer in the context of care and support. Baseline data link school attendance with emotional well-being in children. Because adult illness can cause children to drop out, it is important to sensitize families about the role of consistent schooling in sustaining children’s morale through difficult transitions. On a policy level, the elimination of prohibitive school-related expenses (not just school fees) may mitigate the impact of adult illness on children’s education. Although it is not traditional in East and Southern Africa, training parents (especially women) to write wills may reduce property grabbing. However, the impact of will writing will be limited without efforts to mobilize communities and leaders to uphold women’s and children’s property rights. This may require enacting or strengthening national and religious inheritance laws. The International Convention on the Rights of the Child (signed by most African nations) is another useful tool for advocates. Parents and guardians alike articulate a need for support and advice in discussing difficult issues with children. It is important to respond to this demand, as the psychosocial needs of these children are often overlooked. Memory books—albums with photos, anecdotes, and other family memorabilia—provide a good medium for disclosure and planning for the future. Other means for developing communication skills among parents, guardians, teachers, and religious leaders should be explored. Whether in the form of income generation projects, vocational training, food, clothing, home repairs, or school fees, HIV-positive parents and guardians are very vocal about the need for material support to provide for their many dependents, even in the face of illness. Governments, NGOs, religious organizations, communities, and international agencies each have an essential role to play in mitigating the multi-dimensional impact of AIDS on millions of children in Africa. September, 2000

For more information, contact Rebecca Nyonyintono (anppcan@infocam.co.ug).

About Horizons

Horizons conducts global operations research to improve prevention, care, and support program. Horizons is implemented by the Population Council under a cooperative agreement with the U.S. Agency for International Development. Horizons is implemented by the Population Council in partnership with the International Center for Research on Women (ICRW), the Program for Appropriate Technology in Health (PATH), the International HIV/AIDS Alliance, Tulane University, and the University of Alabama at Birmingham.

Copyright © 2000 The Population Council

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19 Oct 2007