title: Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation.
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.
authors.affiliation: Children's Hospital, University of Puerto Rico Medical Sciences Campus, San Juan, Puerto Rico. blasinj_ileana@hotmail.com
authors.forename: Ileana
authors.initials: I
authors.lastname: Blasini
authors.forename: Caroline
authors.initials: C
authors.lastname: Chantry
authors.forename: Catherine
authors.initials: C
authors.lastname: Cruz
authors.forename: Laura
authors.initials: L
authors.lastname: Ortiz
authors.forename: Iraida
authors.initials: I
authors.lastname: Salabarría
authors.forename: Nydia
authors.initials: N
authors.lastname: Scalley
authors.forename: Beatriz
authors.initials: B
authors.lastname: Matos
authors.forename: Irma
authors.initials: I
authors.lastname: Febo
authors.forename: Clemente
authors.initials: C
authors.lastname: Díaz
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D030881:Disclosure; D005260:Female; D015658:HIV Infections / Q000453:epidemiology / Q000208:ethnology* / Q000628:therapy; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000706:statistics & numerical data; D011647:Puerto Rico / Q000453:epidemiology; D012917:Social Adjustment; D011795:Surveys and Questionnaires