Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation

J Dev Behav Pediatr. 2004 Jun;25(3):181-9. doi: 10.1097/00004703-200406000-00007.

Abstract

The American Academy of Pediatrics strongly encourages the disclosure of HIV status to school-age children and further recommends that adolescents know their HIV status. Limited information exists on the impact of disclosure. We designed and implemented a disclosure model hypothesized to be associated with healthy psychological adjustment and improved medication adherence. We report the model's design and implementation and results of a quasi-experimental study of the disclosure's effects on health care professionals (n = 16), caregivers (n = 39), and HIV-infected youth (n = 40) in Puerto Rico. Information was collected from youth, caregivers, and professionals by semistructured interviews and questionnaires. Most youth (70%) had feelings of normalcy 6 months post-disclosure, and most also improved their adherence to therapy after disclosure as reported by both patients (58%) and caregivers (59%). Eighty-five percent of youth and 97% of caregivers considered disclosure a positive event for themselves and their families. Fewer health care professionals reported feelings of fear, discomfort, and insecurity after protocol participation.

Publication types

  • Evaluation Study

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Adult
  • Caregivers / psychology
  • Child
  • Disclosure*
  • Female
  • HIV Infections / epidemiology
  • HIV Infections / ethnology*
  • HIV Infections / therapy
  • Humans
  • Male
  • Middle Aged
  • Patient Compliance / statistics & numerical data
  • Puerto Rico / epidemiology
  • Social Adjustment*
  • Surveys and Questionnaires