Allocation of family responsibility for illness management in pediatric HIV

J Pediatr Psychol. 2009 Mar;34(2):187-94. doi: 10.1093/jpepsy/jsn065. Epub 2008 Jun 27.


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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Child
  • Cost of Illness*
  • Family / psychology*
  • Female
  • HIV Infections / drug therapy*
  • HIV Infections / epidemiology*
  • Humans
  • Male
  • Patient Compliance / statistics & numerical data*
  • Protease Inhibitors / therapeutic use*
  • Social Responsibility*
  • Surveys and Questionnaires
  • Young Adult


  • Protease Inhibitors