Allocation of family responsibility for illness management in pediatric HIV

Sylvie Naar-King*, Grace Montepiedra, Sharon Nichols, John Farley, Patricia A. Garvie, Betsy Kammerer, Kathleen Malee, Patricia A. Sirois, Deborah Storm

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

53 Scopus citations


Objective: The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV. Methods: A total of 123 youth (ages 8-18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c. Results: Approximately one-fourth of the youth reported being fully responsible for taking medications. A smaller percentage of caregivers reported full youth responsibility. Older youth and caregivers of older youth reported higher degree of youth responsibility for medication-related tasks, though age was unrelated to adherence. Caregiver report of greater responsibility for medications was associated with better adherence. Conclusions: Caregivers are likely to transition responsibility for HIV care to older youth but this transition was not always successful as evidenced by poor medication adherence. Interventions supporting successful transition may improve adherence and subsequently health outcomes in pediatric HIV.

Original languageEnglish (US)
Pages (from-to)187-194
Number of pages8
JournalJournal of pediatric psychology
Issue number2
StatePublished - Mar 2009


  • Adherence
  • Adolescents
  • Children
  • Parents

ASJC Scopus subject areas

  • Developmental and Educational Psychology
  • Pediatrics, Perinatology, and Child Health


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