Disclosure model for pediatric patients living with HIV in Puerto Rico: Design, implentation, and evaluation

Ileana Blasini, Caroline J Chantry, Catherine Cruz, Laura Ortiz, Iraida Salabarría, Nydia Scalley, Beatriz Matos, Irma Febo, Clemente Díaz

Research output: Contribution to journalArticle

88 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)181-189
Number of pages9
JournalJournal of Developmental and Behavioral Pediatrics
Volume25
Issue number3
DOIs
StatePublished - Jun 2004

Keywords

  • Cultural sensitivity
  • Disclosure
  • HIV
  • Pediatric
  • Psychosocial

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Behavioral Neuroscience
  • Psychology(all)
  • Developmental and Educational Psychology

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