Disclosure Model for Pediatric Patients Living with HIV in Puerto Rico

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.

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

“…Other youth also reported negative reactions upon learning of their HIV status, ranging from sadness to hurt and worry. 7,17,25 From the perspective of the children in this study, disclosure is a discrete event rather than a process; only one child interviewed described receiving information preparing her to receive her diagnosis. A few mentioned follow-up discussions with caregivers or providers, but most did not have subsequent conversations, although many had questions and concerns.…”

“…Blasini and colleagues 25 tested an intervention to support families and youth through the disclosure process; 85% of the youth (ages 9-13 years) afterwards reported disclosure as a positive event for them and their families, and 90% supported disclosure in general. However, we cannot determine whether the intervention itself is the reason for the positive perspectives.…”

“…[22][23][24] HIV-infected children in industrialized countries fared well after disclosure, and better than children who were unaware of their HIV infection. 1,19,25,26 While studies have looked at correlates of disclosure, few have investigated the process of disclosure to HIV-infected children specifically, particularly in developing countries. This study was, therefore, exploratory and focused on the experiences of infected children in a comprehensive HIV pediatric care and treatment program in Kinshasa, the Democratic Republic of the Congo (DRC).…”

Informing Adolescents of Perinatally Contracted HIV

“…Further, most youth in those studies had come to terms with their diagnosis by 6 months post-disclosure. Importantly, parents who disclosed the HIV status to their children experienced less depression and considered disclosure as having an overall positive effect on themselves and their families [1][2][3]. Reluctance to disclose the HIV status to children and youth is often based on the caregiver's concern for possible exposure to stigma and discrimination toward the whole family once the adolescent shares the diagnosis with partners, peers, or the public [4][5][6].…”

Status Disclosure in HIV Infected Children in Abakaliki, Ebonyi State, Southeast, Nigeria

“…As such many parents would not agree to communicate openly the child's status. Studies have shown that open communication with the child about his/her HIV diagnosis improved children's psychological adjustment 8,9 . The long interval before disclosure of the illness may play a part in the poor psychosocial adjustment that manifest in anger and resentment towards parents and caregivers 9,10,11 .…”