Panel on Disclosure of HIV Serostatus

1. Panel on Disclosure of HIV Serostatus Gwendolyn B. Scott, MD University of Miami Miller School of Medicine Faculty, Florida/Caribbean AETC

2. Disclosures of Financial Relationships This speaker has no significant financial relationships with commercial entities to disclose. This speaker will not discuss any off-label use or investigational product during the program. This slide set has been peer-reviewed to ensure that there are no conflicts of interest represented in the presentation.

3. Do you feel that parents should disclose their own HIV status to all their children regardless of the child’s HIV status? • Disclose only to HIV Infected children • Disclose to both HIV infected and uninfected children • Undecided

4. What age of the child would be the ideal time for disclosure of parent’s HIV status? • Under 5yo • 5 through 9yo • 10 through 14yo • 15-through 19yo • Over 20

5. What is the major barrier to telling children the parents’ HIV status? Please select one. • Fear of stigma • Fear of rejection by the child • Child will tell others • Do not want to burden the child with this information • Child will be overly concerned about the health of the parent

6. What are the benefits to disclosing parental HIV status to children? • Eliminates secrets in the family • Relieves stress • Allows for open planning for care of the children should something happen to the parent. • Provides family support for the infected person—closer relationships. • May be critical to participation in an HIV research study, particularly when the child reaches the age of 18, where a new consent would need to be signed.

7. Review of the Literature: Disclosure of Maternal HIV Status to Children • Tompkins, T. (2007). "Disclosure of Maternal HIV Status to Children: To Tell or Not To Tell … That is the Question." Journal of Child and Family Studies 16(6): 773-788. • 23 HIV infected women and one of their non infected children (9-16 years of age). • 61% disclosed, the remainder would probably disclose their children as they got older (around 15yo).

8. Review of the Literature: Disclosure of Maternal HIV Status to Children • Simoni, J. M., M. L. Davis, et al. (2000). "Mothers with HIV/AIDS and Their Children: Disclosure and Guardianship Issues." Women & Health 31(1): 39-54. • 188 HIV positive women in NYC and their 267 children • Only 50% had disclosed to at least one of their children. Only 57% had made formal plans for the children’s care. • Older children were more likely to be disclosed

9. Review of the Literature: Disclosure of Maternal HIV Status to Children • Corona, R., M. K. Beckett, et al. (2006). "Do Children Know Their Parents’ HIV Status? Parental Reports of Child Awareness in a Nationally Representative Sample." Ambulatory Pediatrics 6(3): 138-144. • 274 parents from a nationally representative sample of HIV infected adults (HIV Cost and services Utilization Study) • 44% of their children aged 5-17 were aware of their parent’s diagnosis, 42% knew nothing, 14% knew parent had a serious illness (Mean age of children was 10) • 90% of these had discussed health implications of HIV with their disclosed children

10. Review of the Literature: Disclosure of Maternal HIV Status to Children • Rotheram-Borus, M. J., B. H. Draimin, et al. (1997). "The impact of illness disclosure and custody plans on adolescents whose parents live with AIDS." AIDS 11(9): 1159-1164. • Parents were more likely to disclose to adolescents (73%) compared to younger children (23%) • 44% disclosed to all their children • 11% disclosed to none • 80% had discussed custody plans, but only 30% initiated legal plans

11. Summary of Studies • Studies varied and had different outcomes and goals, different methods of data collection • 44-61 % of parents disclosed their status to children/adolescents in these studies. • Greater likelihood to disclose to adolescents

12. HIV Disclosure to Children • Maternal concerns • Child will disclose HIV diagnosis to other people • In one study, 4/47 disclosed when told not to. Murphy, D. A., K. J. Roberts, et al. (2002). "Stigma and Ostracism Associated with HIV/AIDS: Children Carrying the Secret of Their Mothers' HIV+ Serostatus." Journal of Child and Family Studies 11(2): 191-202. • Fear of stigma and ostracism

13. HIV Disclosure to ChildrenReasons not to Disclose • Do not know how to tell the children • Maternal desire to protect the child • Information would upset the child • Want a normal life for the child-”Just be a child” • Fear of loss of respect and rejection • Children are too young to understand • Information would upset the child • Child should not bear burden of mother’s illness

14. Maternal Disclosure to ChildrenNegative Aspects • Fear and uncertainty • Forced secrecy about the mother’s diagnosis for fear of stigma • Behavioral changes in the child. • Short term depression, anxiety or anger • Shifting responsibilities between mother and child

15. Maternal HIV Disclosure to ChildrenReasons to Disclose • Child may already have uncertainty about mothers health and is asking questions • Reduce maternal stress by “Telling the secret” • Open new channels of communication between mother and child • Allows an older child to become a partner in future planning—open discussion about death and dying

16. What Factors should be considered in Disclosure? • Child’s developmental level • Maturity • Coping skills • Likelihood that the child will gain knowledge of the mother’s illness through someone else • Status of mother’s health

17. Child’s Concerns When Disclosed • Friends finding out about mother’s status • Child is labeled as infected because of maternal status • Want to protect their mother • Concern about having HIV themselves • Burden of keeping a secret is stressor

18. Other Issues • Human subject research issues • What are the IRB issues regarding age of assent and age of consent? • Ethical Issues • Do youth need to know that they were exposed to HIV? If so, what is the correct timing and age to inform them?

19. Next Steps • Disclosure is a process. Is there an ideal age of disclosure? • How do we address the fears and concerns of the parents? Education is important. • Develop a disclosure format to share with sites and caregivers of children in our study—Formalize the process. • Offer support in assisting with disclosure and in follow up with children. • Collect outcome data. • Need everyone’s input! • Let’s discuss!!