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Journal of Pediatric Psychology Advance Access originally published online on June 27, 2008
Journal of Pediatric Psychology 2009 34(2):187-194; doi:10.1093/jpepsy/jsn065
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© The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org

Allocation of Family Responsibility for Illness Management in Pediatric HIV

Sylvie Naar-King, PhD1, Grace Montepiedra, PhD2, Sharon Nichols, PhD3, John Farley, MD4, Patricia A. Garvie, PhD5, Betsy Kammerer, PhD6, Kathleen Malee, PhD7, Patricia A. Sirois, PhD8, Deborah Storm, PhD, RN9 and PACTG P1042S Team*

1Carman and Ann Adams Department of Pediatrics, Wayne State University, 2Department of Biostatistics, Harvard School of Public Health, Center for Biostatistics in AIDS Research, 3Department of Neurosciences, University of California, 4Department of Pediatrics, University of Maryland School of Medicine, 5Division of Behavioral Medicine, St Jude Children's Research Hospital, 6Department of Psychiatry, Children's Hospital Boston, 7Department of Child and Adolescent Psychiatry, Children's Memorial Hospital, 8Department of Pediatrics, Tulane University Health Sciences Center, and 9University of Medicine and Dentistry of New Jersey, François-Xavier Bagnoud Center

All correspondence concerning this article should be addressed to Sylvie Naar-King, Pediatric Prevention Research Center, University Health Center 6D5, 4201 St Antoine, Detroit, MI 48210, USA. E-mail: snaarkin{at}med.wayne.edu


  Abstract

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.

Key words: adherence; adolescents; children; HIV/AIDS; parents.

*The institutions and individuals that participated in the PACTG Protocol 1042S are listed in the Appendix.

Received February 13, 2008; revision received May 28, 2008; accepted May 28, 2008


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