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Disclosure Model for Pediatric Patients Living with HIV in Puerto Rico: Design, Implementation, and Evaluation

BLASINI, ILEANA M.D., M.P.H.1; CHANTRY, CAROLINE M.D.2; CRUZ, CATHERINE M.S.1; ORTIZ, LAURA M.S.W.1; SALABARRÍA, IRAIDA M.S.W.1; SCALLEY, NYDIA M.S.1; MATOS, BEATRIZ Ph.D.1; FEBO, IRMA M.D.1; DÍAZ, CLEMENTE M.D.1\

Journal of Developmental & Behavioral Pediatrics: June 2004 - Volume 25 - Issue 3 - p 181-189
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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.

1Children's Hospital, University of Puerto Rico Medical Sciences Campus, San Juan, Puerto Rico

2Division of General Pediatrics, Department of Pediatrics, University of California Davis Medical Center, Sacramento, California

Received April 2002; accepted February 2004.

Address for reprints: Ileana Blasini, M.D., University of Puerto Rico Medical Sciences Campus, Children's Hospital Pediatric ACTU, PO Box 365067, San Juan, PR 00936-5067; e-mail: blasini_ileana@hotmail.com.

© 2004 Lippincott Williams & Wilkins, Inc.