Making a difference for children affected by AIDS : baseline findings from operations research in Uganda

The study is based on a sample of 353 parents who are HIV-positive, 495 children of people living with HIV/AIDS (PLHA), 233 orphans, and 326 current and standby guardians. Key findings are as follows: (1) The impact of adult illness on children begins when a parent is diagnosed as HIV-positive or becomes ill with HIV/AIDS. Earlier research demonstrated that children orphaned by AIDS suffer physical, educational, and emotional setbacks. Baseline data from the current study demonstrate that these setbacks begin before parental death. For example, older children of PLHA (totaling 105, aged 13-18 years) report a decline in school attendance (26%) and performance (28%) when parents became ill. (2) Property grabbing is widespread, with women and children especially vulnerable. Among widows (totaling 204), 29% say that property was taken from them when their husbands died, making them four times more likely than widowers to have experienced property grabbing. In addition, 21% of older orphans (totaling 105, aged 13-18 years) report experiencing property grabbing. Despite this problem, only 10% of parents in this study have prepared written wills. (3) Many guardians are in poor health, and some are even infected with HIV/AIDS. Of the 51 guardians in this study who know their serostatus, one-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". As many as 40% of the HIV-positive parents in the sample look after orphans, meaning that they themselves are HIV-positive guardians. With elderly relatives and others in poor health comprising the safety net, it is likely that many children will lose not one or two but a series of caregivers and relatives. (4) Most older children want their parents to tell them the truth about being HIV-positive. Most older orphans who know that a parent died of AIDS say that parents should disclose their own serostatus to their children. Parents are also predominantly in favor of disclosing their HIV status to their children, but the majority (57%) have not done so, with many reporting uncertainty about how to discuss the topic. Parents and children who favor of disclosure say they do so because they value honesty, talking about prevention, and being able to plan for the future. (5) When asked what they need in order to look after their children and foster children, both parents and guardians are most likely to say that they need material assistance or support. Recommendations addressing these problems are provided.