DISCLOSURE OF HIV-SEROSTATUS Disclosing to Children Their HIV Status

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

2. 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?

3. 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

4. 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

5. 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

6. Pediatric Disclosure:Theoretical Models

7. 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

8. 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)

9. 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

10. 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

11. 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

12. 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?

13. The Disclosure Process….