The 131st Annual Meeting (November 15-19, 2003) of APHA

Abstract #61033

Mary K. Irvine, MPH¹, Nancy L. VanDevanter, DrPH¹, Mary Arnold, NP², Renee Cohall, ACSW³, Cheryl Merzel, DrPH², and Danielle Greene, MPH¹. (1) Center for Applied Public Health, Mailman School of Public Health, Columbia University, 722 West 168th St., 10th Floor, New York, NY 10032, (212) 342-0152, mki5@columbia.edu, (2) Center for Applied Public Health, Mailman School of Public Health, Columbia University, 722 West 168th St., 10th Floor, New York, NY 10032, (3) Harlem Health Promotion Center, Columbia University, 513 West 166th Street, Third Floor, New York, NY 10032

Background: As children survive longer with HIV, disclosure issues gain prominence in their care. Appropriate disclosure of the child’s illness to the child and/or others may strengthen treatment partnerships and facilitate adherence. Methods: Thirty parents attending pediatric HIV outpatient clinics in northern Manhattan participated in semi-structured interviews. The sample comprised Latino and black adoptive and biological parents (aged 29 to 73) of patients 3 to16 years old. Results: Caregivers described an incremental disclosure process, which often entailed addressing other family members’ HIV and substance use, children’s adoption, control of perceptions outside the home, and/or expectations for the future. Respondents expressed concerns about their children experiencing information overload, differential treatment, distress, and/or anger/blame toward the parent(s). Many respondents received or planned to receive disclosure assistance from their pediatric HIV care providers, who could advise on timing, offer developmentally appropriate HIV education, and fill the role of non-family-member confidante for the child. Children’s awareness of their illness was presented as a factor for acceptance of medications and a determinant of access to certain kinds of peer support and HIV-related resources. Respondents indicated that their ability to rely on friends, family, or school/daycare personnel to help with childcare sometimes depended upon the communication of HIV status information to those responsible adults. Conclusions: Disclosure, to the child and to others, appears critical to the support of medication adherence from childhood into adolescence. While guardians must ultimately decide when and how to disclose, they can benefit from involvement of their pediatric providers in the process.

Learning Objectives:

At the conclusion of the presentation, the participant in this session will be able to:
• Identify 3 disclosure-related concerns expressed by respondents in this study.
• Describe 3 ways in which parental disclosure of a child’s HIV (to the child and/or to other people) can contribute to pediatric antiretroviral adherence.
• Discuss how parents may engage their children's HIV care providers in the individualized process of disclosure.

Keywords: Adherence, Children and Adolescents

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None specifically, though the study was based at three clinics participating in a multi-site pediatric adherence initiative for which the Mailman School of Public Health of Columbia University was the lead agency.
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.