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.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Research Project (R01)
Project #
5R01HD040103-02
Application #
6526432
Study Section
Special Emphasis Panel (ZRG1-AARR-8 (01))
Program Officer
Newcomer, Susan
Project Start
2001-09-27
Project End
2004-08-31
Budget Start
2002-09-01
Budget End
2003-08-31
Support Year
2
Fiscal Year
2002
Total Cost
$412,229
Indirect Cost
Name
University of California Los Angeles
Department
Pediatrics
Type
Schools of Medicine
DUNS #
119132785
City
Los Angeles
State
CA
Country
United States
Zip Code
90095
Kennedy, David P; Cowgill, Burton O; Bogart, Laura M et al. (2010) Parents' disclosure of their HIV infection to their children in the context of the family. AIDS Behav 14:1095-105
Corona, Rosalie; Cowgill, Burton O; Bogart, Laura M et al. (2009) Brief report: a qualitative analysis of discussions about HIV in families of parents with HIV. J Pediatr Psychol 34:677-80
Cowgill, Burton O; Bogart, Laura M; Corona, Rosalie et al. (2008) Fears about HIV transmission in families with an HIV-infected parent: a qualitative analysis. Pediatrics 122:e950-8
Bogart, Laura M; Cowgill, Burton O; Kennedy, David et al. (2008) HIV-related stigma among people with HIV and their families: a qualitative analysis. AIDS Behav 12:244-54
Cowgill, Burton O; Beckett, Megan K; Corona, Rosalie et al. (2007) Children of HIV-infected parents: custody status in a nationally representative sample. Pediatrics 120:e494-503
Cowgill, Burton O; Beckett, Megan K; Corona, Rosalie et al. (2007) Guardianship planning among HIV-infected parents in the United States: results from a nationally representative sample. Pediatrics 119:e391-8
Corona, Rosalie; Beckett, Megan K; Cowgill, Burton O et al. (2006) Do children know their parent's HIV status? Parental reports of child awareness in a nationally representative sample. Ambul Pediatr 6:138-44
Schuster, Mark A; Beckett, Megan K; Corona, Rosalie et al. (2005) Hugs and kisses: HIV-infected parents' fears about contagion and the effects on parent-child interaction in a nationally representative sample. Arch Pediatr Adolesc Med 159:173-9