Allocation of Family Responsibility for Illness Management
in Pediatric HIV
Sylvie Naar-King,1PHD, Grace Montepiedra,2PHD, Sharon Nichols,3PHD, John Farley,4MD,
Patricia A. Garvie,5PHD, Betsy Kammerer,6PHD, Kathleen Malee,7PHD, Patricia A. Sirois,8PHD,
Deborah Storm,9PHD, RN, 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, and9University of Medicine and Dentistry of New Jersey,
Franc ¸ois-Xavier Bagnoud Center
in families of children and adolescents perinatally infected with HIV.
(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.
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.
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.
The purpose of the study is to describe allocation of responsibility for illness management
MethodsA total of 123 youth
Results Approximately one-fourth
Key wordsadherence; adolescents; children; HIV/AIDS; parents.
Protease inhibitor therapy and aggressive multidrug regi-
mens have increased the likelihood that children perina-
tally infected with HIV will survive into adolescence and
young adulthood. Improved understanding of the patho-
genesis of HIV and viral activity has suggested that medica-
tion adherence must be nearly perfect to minimize viral
load and prevent drug resistance (Paterson et al., 1999).
Unfortunately, treatment for HIV presents special chal-
lenges for adherence. Antiretroviral (ART) medications
often involve demanding dosing schedules and have sig-
nificant adverse effects. Because pediatric HIV most often
affects disadvantaged families through maternal–child
transmission, illness management may be affected by
family and caregiver issues such as parental illness and
stress, substance abuse, lack of adequate support net-
works, loss and change of caregivers, and poor access to
healthcare resources. Additional adherence challenges
related to HIV infection include potential cognitive and
learning limitations and the stigma of the disease.
Studies of youth with other pediatric chronic medical
conditions suggest adherence to treatment regimens dete-
riorates in adolescence (Drotar & Ievers, 1994), and medi-
cation adherence in pediatric HIV has been found to
decline as children grow older (Mellins, Brackis-Cott,
Dolezal, & Abrams, 2004; Williams et al., 2006). Parents
tend to decrease their involvement and supervision of their
*The institutions and individuals that participated in the PACTG Protocol 1042S are listed in the Appendix.
All correspondence concerning this article should be addressed to Sylvie Naar-King, Pediatric Prevention Research Center, University Health
Center 6D5, 4201St Antoine, Detroit, MI 48210, USA. E-mail: firstname.lastname@example.org
Journal of Pediatric Psychology 34(2) pp. 187–194, 2009
Advance Access publication June 27, 2008
Journal of Pediatric Psychology vol. 34 no. 2 ? The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
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