Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation.
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.
Blasini
Ileana
I
Children's Hospital, University of Puerto Rico Medical Sciences Campus, San Juan, Puerto Rico. blasinj_ileana@hotmail.com
Chantry
Caroline
C
Cruz
Catherine
C
Ortiz
Laura
L
Salabarría
Iraida
I
Scalley
Nydia
N
Matos
Beatriz
B
Febo
Irma
I
Díaz
Clemente
C
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