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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….