Background• HIV-infected parents face the challenge of caring for their children

while coping with a disease that may lead to their incapacitation or death.

• Parents may find the guardianship planning process challenging while managing their own illness.

• In contrast to past studies that were limited to convenience samples, we used nationally representative data to describe guardianship planning among HIV-infected parents.

MethodsThe Sample• Respondents participated in the HIV Cost and Services Utilization

Study (HCSUS), which selected a national probability sample of people at least 18 years old with known HIV infection in the contiguous United States during the first two months of 1996.

• This article draws on two waves of data collected from January 1996 -April 1997 (baseline) and from December 1996 - June 1997 (follow-up).

MeasuresChild-level outcomes (from follow-up survey):• Level of guardianship planning

1) parent had not identified a guardian 2) parent had identified a guardian, but guardian had not agreed3) guardian had agreed 4) legal documentation of guardianship plan was complete

• Preferred guardian 1) other biological parent 2) spouse/partner who is not biological parent3) grandparent 4) other relative5) parent’s friend 6) unrelated adoption 7) other

Predictor variables• Parent age, gender, race/ethnicity, education, annual household

income, exposure/risk group, year of HIV diagnosis, hospital stays, lowest CD4 counts, use of HAART, living situation, language preference, metropolitan statistical area, geographic region, child age and HIV status.

Guardianship Planning Among HIV-Infected Parents in the United States: Results from a Nationally Representative Sample

Burton O. Cowgill, MPH1,2; Megan K. Beckett, PhD3; Rosalie Corona, PhD4; Marc N. Elliott, PhD3; Michelle T. Parra, PhD5; Annie J. Zhou, MS3; Mark A. Schuster, MD, PhD1,2,3

1 Department of Pediatrics, David Geffen School of Medicine at UCLA, Los Angeles, CA2 Department of Health Services, School of Public Health at UCLA, Los Angeles, CA

3 RAND Corporation, Santa Monica, CA 4 Department of Psychology, Virginia Commonwealth University, Richmond, VA

5 Los Angeles County Department of Public Health, Los Angeles, CA

Results• Only 28% of unmarried HIV-infected parents had a legally

documented guardianship plan in place for their children, while 53% of parents had identified a guardian that agreed to care for their children, but had not prepared a legal document. [Table 2].

• Parents with the lowest CD4 counts (0-49/mm³) and parents living without other adults in the household were more likely to have completed the guardianship planning process [Table 2].

• Parents listed grandparents (36%) and other relatives (34%) as the preferred guardians [Table 3].

Discussion• Nearly three-quarters of children of HIV-infected parents are at

risk for an unstable transition after their parent's death. By assuring that a formal guardianship plan is in place, parents can prevent their children from experiencing added hardships at an already difficult time.

• Parents may need assistance drafting a will or stand-by guardianship agreement that details their choice for a preferred guardian.

• Parents with the lowest CD4 counts were more likely to have completed a guardianship plan. As parents’ health declines, they may feel it is more important to formalize plans for their children’s future.

• Parents living with other adults in the household were less likely to have completed the guardianship planning process. Perhaps these parents assumed the other adults, such as a grandparent or another relative, would assume guardianship of the children upon the parent’s death. A formal guardianship plan would make sure the preferred guardian was granted custody of the child.

• Clinicians and others who treat HIV-infected parents may be able to provide counseling and referrals to assist parents in the guardianship planning process.

AcknowledgmentsThis study was supported by the National Institute of Child Health and Human Development (RO1 HD40103), the Centers for Disease Control and Prevention (U48/DP000056). The original data collection was supported by the Agency for Health Care Policy and Research (U-01HS08578). We are indebted to Jacinta Elijah, BA, Theresa Nguyen, BS, and Jennifer Patch, BA, for research assistance. We also wish to thank the HCSUS Consortium for making the study possible and the study participants for sharing their time and stories.

TABLE 1: Participant Characteristics

Parent Variables (N=222) Value*

Female 83%

Mean Age 33.5 years

Race/Ethnicity

African American 58%

Latino 21%

White/Other 21%

Education

Some high school 41%

High school graduate 31%

Some college 25%

College graduate 4%

Exposure/Risk Group

IDU** 24%

MSM*** 5%

Heterosexual 57%

Other 14%

Lowest CD4 Count

HIV(-)/Unknown Status

≥500/mm³ 27%

200-499/mm³ 42%

50-199/mm³ 20%

0-49/mm³ 11%

Live With Other Adults 57%

Child Variables (N=391) Value

Average Age 8.7 years

HIV-negative/Unknown 92%

*Percents are weighted **IDU: Injection drug users ***MSM: men who had sex with men

Analyses• Multivariate ordered logistic regression (OLR) analyses were used for the guardianship planning outcome.  • We included predictors for which bivariate OLR analyses on the overall sample had 2-sided p-values of <0.20.  • We report whether each category of a given variable differed significantly from the corresponding omitted category with a

Wald t-test. • All analyses employ modifications of HCSUS weights that incorporate the number of children within families and account for

this and other aspects of the complex sample design, including the clustering of children within families, using STATA survey commands.

Variable Guardian not identified

(%)

Identified a guardian

(%)

Guardian agreed

(%)

Legal document prepared

(%)

OR (95% CI)

Total Sample 12 6 53 28

Parent Characteristics

Lowest CD4 Count ##

≥500/mm³ 9 1 63 26 0.3 (0.1, 0.9)*

200-499/mm³ 15 7 58 20 0.2 (0.1, 0.6)**

50-199/mm³ 13 9 48 30 0.3 (0.1, 0.9)*

0-49/mm³ 4 2 37 57 1

Living Situation #

With adult/s 16 7 56 21 1

Without adults 7 6 50 36 1.9 (1.0, 3.6)*

Language Preference #

English 10 6 55 29 1

Spanish 38 14 31 21 0.6 (0.2, 2.4)

Child Characteristics

HIV Status #

HIV-positive 4 2 40 54 2.5 (0.9, 7.1)

HIV-negative/Unknown 13 7 54 26 1

# indicates that percentages differ across the subgroups at p<.05 within the bivariate ordinal logistic regression; ## p<.01; ### p<.001p<.05 for Wald t test within the ordinal logistic regression comparing the indicated category with the omitted category; ** p<.01; *** p<.001.For these analyses, 222 parents provided responses for 391 children.

TABLE 2:Selected Bivariate Results and Multivariate Ordered Logistic Regression for Unmarried HIV-Infected Parents’ Level of Guardianship Planning

Relationship to Child (Unweighted N=341) Weighted %

Other biological parent 17

Spouse/Partner who is not biological parent 2

Grandparent 36

Other relative 34

Parents’ friend 7

Unrelated adoption 1

Other 3

Table 3: Unmarried HIV-Infected Parents’ Preferred Choice for Child’s Guardian