DISCLOSURE OF HIV-SEROSTATUS Disclosing to Children Their HIV Status Ana Garcia, PhD Assistant Professor of Clinical Pediatrics University of Miami Miller School of Medicine

Disclosing to Children Their HIV Status: What’s the controversy? Why, what, when and how to do this? Are there patterns of disclosure? To disclose or not-disclose? What are the effects of disclosure and non-disclosure on the child and family? What are the issues that influence a family to disclose? What is the child’s reaction?

Barriers to Disclosure Child is too young Do not want to upset the child Child is not asking questions Fear of parental disclosure Child cannot keep a secret Caregiver does not know how to initiate the process

Devil’s Advocate Child has a right to know Disclosure may empower the child Improve adherence Disclosure might prompt safer sex practices Child has a right to disclose to sexual partner or not Parent has the right to decide Non-disclosure will protect the child from burden Non-conclusive Study results split on outcomes Sexual partners have the right to know risks

Disclosure of HIV to Children 25 articles (1992 – 2012) 4 articles were literature reviews 2 were qualitative studies 9 were quantitative studies 10 were descriptive articles Literature search using PsychINFO and PubMed

Pediatric Disclosure: Theoretical Models

Four-Phase Model (Tasker, 1992) Secrecy Phase: shock, loneliness Exploratory Phase: search parent support groups consider talking to children about child’s clinic visits and treatment Readiness Phase: move closer to child’s disclosure about child’s status begin to plan disclosure Disclosure Phase: Disclose the child’s HIV status

Four-Phase Model What are the conflicts / tensions among family members? (their parenting and coping styles differ) Should professionals assist or not, in the disclosure process? FPM is a “process-model” (it can not predict disclosure or non-disclosure)

The Puerto Rico Disclosure Model: A Five-Step Process Modeled after the Tasker, 1992 Four-Phase Model Training for health professionals Parental preparation through Peer Support groups / longitudinal, educational sessions with the staff Patient-directed assessment sessions throughout disclosure process Disclosure event Educational support groups post-disclosure

The Puerto Rico Disclosure Model: Outcomes 86% of the pediatric participants thought timing of disclosure was good; 70% feel normal Protective parents delayed telling: were distressed before and after disclosure Most disclosures occurred at home (69%); 43% of children remembered a general experience 68% of children rated sexual preparation as important

Study Outcomes Communication / perceived isolation (Hardy et al, 1994) Adherence: 6 studies were unable to draw conclusions as disclosure was not a focus Levels of disclosure: full, partial or none (involved lying or deception) Stigma a recurring theme

Future Research Longitudinal research on the disclosure process Processes that promote or hinder communication Helping providers make decisions about disclosure (caregiver vs. child) More qualitative studies to address the quality of parent-child interactions How does the process of disclosure unfold over time?

The Disclosure Process….