Background

1
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, CA 2
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

• 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 lt0.20. 
• 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.

• 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.

• 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.

TABLE 1 Participant Characteristics
TABLE 2Selected Bivariate Results and
Multivariate Ordered Logistic Regression for
Unmarried HIV-Infected Parents Level of
Guardianship Planning

• Methods
• The 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).
• Measures
• Child-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 agreed
• 3) guardian had agreed
• 4) legal documentation of guardianship plan was
  complete
• Preferred guardian
• 1) other biological parent
• 2) spouse/partner who is not biological parent
• 3) grandparent

• 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
  childrens 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 parents
  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.

Table 3 Unmarried HIV-Infected Parents
Preferred Choice for Childs Guardian
Acknowledgments This 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.