An estimated 16,600 U.S. children (<18 years) were orphaned by AIDS in 1996, and there were over 120,000 children with parents receiving care for HIV in 1996-97. The population of children with HIV+ parents is growing because of demographic shifts in the epidemic and increases in life expectancy of HIV+ people. Although only a small percentage of the children are infected, virtually all will be affected by HIV. Parents living with HIV often have limited financial, social, and emotional resources. Parents may intermittently be too ill to take care of children, and if parents die, children will need to be permanently cared for by others. Prior studies provide valuable data on some topics related to these children, but there has been no prior national probability sample. We propose to study this population to gain a better understanding of important issues in the lives of HIV+ parents and their children.
Our specific aims are to examine: (1) factors associated with HIV+ parents retaining, giving up, or losing custody of their children, and the effect custody arrangements have on parent and child, (2) what guardianship plans HIV+ parents have made in case of incapacitation or death, what factors influence planning, whether parents involve their children in planning, and what resources would help them address guardianship issues, (3) what factors influence parents to disclose their infection to children, reasons for disclosure and non-disclosure, and impact of disclosure on parent and child, and (4) how HIV affects parenting behaviors and the parent-child relationship, important stresses and challenges for parents and children, and the role of social support in helping parents take care of children. We propose a two-phase study to address the aims. In Phase I, we will analyze data on 848 parents with 1.635 children from the HIV Cost and Services Utilization Study (HICSUS), a nationally representative study of people receiving care for HIV in the U.S. In Phase II, we will conduct semi-structured interviews with a subsample of 108 parents and about 71 of their children (7-17 years old). We will stratify by respondent gender, race/ethnicity, age of children, and amount of contact respondent has with children. We will use the interviews to explore important patterns found in the quantitative analyses. We will also examine topics not covered in detail in the quantitative data (e.g., social supports) and topics not naturally amenable to survey research (e.g., decision-making processes related to disclosure of parental HIV to children and guardianship planning). We will compare the parent and child perspectives on the impact of HIV on families and, in particular, on children.
