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….