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Panel on Disclosure of HIV Serostatus Gwendolyn B. Scott, MD University of Miami Miller School of Medicine Faculty, Florida/Caribbean AETC Slide 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. Slide 3 Do you feel that parents should disclose their own HIV status to all their children regardless of the childs HIV status? A.Disclose only to HIV Infected children B.Disclose to both HIV infected and uninfected children C.Undecided Slide 4 What age of the child would be the ideal time for disclosure of parents HIV status? A.Under 5yo B.5 through 9yo C.10 through 14yo D.15-through 19yo E.Over 20 Slide 5 What is the major barrier to telling children the parents HIV status? Please select one. A.Fear of stigma B.Fear of rejection by the child C.Child will tell others D.Do not want to burden the child with this information E.Child will be overly concerned about the health of the parent Slide 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 personcloser 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. Slide 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). Slide 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 childrens care. Older children were more likely to be disclosed Slide 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 parents 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 Slide 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 Slide 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 Slide 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 Slide 13 HIV Disclosure to Children Reasons 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 mothers illness Slide 14 Maternal Disclosure to Children Negative Aspects Fear and uncertainty Forced secrecy about the mothers diagnosis for fear of stigma Behavioral changes in the child. Short term depression, anxiety or anger Shifting responsibilities between mother and child Slide 15 Maternal HIV Disclosure to Children Reasons 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 planningopen discussion about death and dying Slide 16 What Factors should be considered in Disclosure? Childs developmental level Maturity Coping skills Likelihood that the child will gain knowledge of the mothers illness through someone else Status of mothers health Slide 17 Childs Concerns When Disclosed Friends finding out about mothers 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 Slide 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? Slide 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 studyFormalize the process. Offer support in assisting with disclosure and in follow up with children. Collect outcome data. Need everyones input! Lets discuss!!