Who Forgot? The Challenges of Family Responsibility for Adherence in Vulnerable Pediatric Populations

Abstract

* Abbreviations: ART — : antiretroviral therapy Buchanan et al1 have provided important data and a thoughtful report on barriers to medication adherence in HIV-infected children and youth. These investigators wisely assessed both child and caregiver perceptions about barriers to adherence with a questionnaire containing 19 different barriers to medication adherence asking each respondent how often each barrier occurred in the last month. They did this to assess the congruence between child and caregiver perception of barriers to adherence to antiretroviral therapy (ART). They also used an adaptation1 of the Diabetes Family Responsibility Questionnaire ,3 a self-report measure I developed with Wendy Auslander at Washington University in 1990. Identical versions of this questionnaire ask the parent and child if the primary responsibility for a series of tasks involved in adhering to the prescribed treatment plan (originally type 1 diabetes) is carried out by the parent or the child, or if the responsibility is shared between the parent and child. We originally developed this questionnaire about family–responsibility-sharing to understand more about how the transition of responsibility for adherence tasks between parents and children relates to health outcomes. … Address correspondence to Barbara J. Anderson, PhD, Department of Pediatrics, Baylor College of Medicine, 1102 Bates St, Suite #730, Houston, TX 77030. E-mail: bja{at}bcm.edu