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

doi:10.1093/jpepsy/jsn065

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

Psychiatry and Behavioral Sciences

Research output: Contribution to journal › Article › peer-review

53 Scopus citations

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.

Original language	English (US)
Pages (from-to)	187-194
Number of pages	8
Journal	Journal of pediatric psychology
Volume	34
Issue number	2
DOIs	https://doi.org/10.1093/jpepsy/jsn065
State	Published - Mar 2009

Funding

We thank the children and families for their participation in PACTG 1042S, and the individuals and institutions involved in the conduct of P1042S. The study was funded by the United States National Institute of Allergy and Infectious Diseases, and the National Institute of Child Health and Human Development. This work was supported by the Statistical and Data Analysis Center (SDAC) of the Pediatric AIDS Clinical Trials Group at Harvard School of Public Health, under the National Institute of Allergy and Infectious Diseases cooperative agreement No. 5 U01 AI41110. The project described was supported by Grant Number U01AI068632 and 1 U01 AI068616 from the National Institute of Allergy and Infectious Diseases.

Keywords

Adherence
Adolescents
Children
HIV/AIDS
Parents

ASJC Scopus subject areas

Developmental and Educational Psychology
Pediatrics, Perinatology, and Child Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1093/jpepsy/jsn065

Cite this

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title = "Allocation of family responsibility for illness management in pediatric HIV",

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.",

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note = "Funding Information: We thank the children and families for their participation in PACTG 1042S, and the individuals and institutions involved in the conduct of P1042S. The study was funded by the United States National Institute of Allergy and Infectious Diseases, and the National Institute of Child Health and Human Development. This work was supported by the Statistical and Data Analysis Center (SDAC) of the Pediatric AIDS Clinical Trials Group at Harvard School of Public Health, under the National Institute of Allergy and Infectious Diseases cooperative agreement No. 5 U01 AI41110. The project described was supported by Grant Number U01AI068632 and 1 U01 AI068616 from the National Institute of Allergy and Infectious Diseases.",

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AU - Malee, Kathleen

AU - Sirois, Patricia A.

AU - Storm, Deborah

N1 - Funding Information: We thank the children and families for their participation in PACTG 1042S, and the individuals and institutions involved in the conduct of P1042S. The study was funded by the United States National Institute of Allergy and Infectious Diseases, and the National Institute of Child Health and Human Development. This work was supported by the Statistical and Data Analysis Center (SDAC) of the Pediatric AIDS Clinical Trials Group at Harvard School of Public Health, under the National Institute of Allergy and Infectious Diseases cooperative agreement No. 5 U01 AI41110. The project described was supported by Grant Number U01AI068632 and 1 U01 AI068616 from the National Institute of Allergy and Infectious Diseases.

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N2 - 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.

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Allocation of family responsibility for illness management in pediatric HIV

Abstract

Funding

Keywords

ASJC Scopus subject areas

UN SDGs

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