1. Panel on Disclosure of HIV Serostatus Ana Garcia, PhD, LCSW Gwendolyn Scott, MD Ann Usitalo, PhD, MPH

2. Disclosure of Financial Relationships The speakers have no significant financial relationships with commercial entities to disclose. This speakers will not discuss off-label use or an 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. ISSUES, STRATEGIES, PROCESSES

4. Introduction Communication of personal information about one person to another –To reveal –To expose Complex, multilayered process Personal decision Power and control –Empowerment

5. Disclosure occurs in context of Relationships Social and cultural norms Communication skills Psychosocial variables Legal, ethical and moral issues

6. Disclosure to HIV+ Children Ongoing discussion as child matures cognitively, emotionally, sexually Helps child understand disease Avoids accidental disclosure May decrease behavior problems by decreasing stress Validates concerns and clarifies misconceptions Establishes basis for honesty in important relationships American Academy of Pediatrics encourages disclosure to school-aged children Gerson, et al., 2001; NY State Department of Health AIDS Institute, 2009; Weiner, Mellins, Marhefka & Battles, 2007;

7. Caregiver Concerns Child will inappropriately disclose Stigma, rejection, loss of support Desire to protect child from worrying Fear that knowledge of status will lead to mental health and behavioral problems Feelings of guilt and shame Uncertainty about what to tell child Fear of child’s anger or blame Non-disclosure of adoption or relationship status NY State Department of Health AIDS Institute, 2009

8. Guidelines for Disclosure Begin discussion early in childhood Timing depends on caregiver readiness & child’s cognitive skills and maturity Discuss risks and benefits Address caregiver concerns Collaborate in development of plan Respect caregiver’s reasons for resisting Refer for counseling if necessary NY State Department of Health AIDS Institute, 2009

9. Strategies to Facilitate Disclosure Child too young or emotionally immature to understand –Increase information gradually, from “medications that keep you healthy” to discussions of immune system Child will disclose to others –Assess cognitive and emotional ability to understand confidentiality –Identify people child can talk to –Promote intra-family communication Child will have difficult reaction –Assess child’s emotional and behavioral functioning –Offer support before and after disclosure NY State Department of Health AIDS Institute, 2009

10. Strategies to Facilitate Disclosure Parent feels guilty –Counseling to alleviate guilt –Encourage parent in affirming and helpful role Concern that child will ask about sexual behavior or drug use –Help caregiver decide how to answer questions –Use role-playing to prepare caregiver Caregivers disagree about disclosure –Assess individual concerns –Develop plan acceptable to both NY State Department of Health AIDS Institute, 2009

11. General Principles of Disclosure Consider Caregiver’s thoughts & feelings, cultural influences, family/social circumstances, the child (!), effect on other siblings and family members, types of support available Use developmentally appropriate language Keep disclosure separate from birthdays and other important events Share diagnosis quickly; do not delay or stall Promote sharing of feelings but ACCEPT silence Allow child to ask questions at disclosure and later Provide educational materials Revisit the issue later but do not force NY State Department of Health AIDS Institute, 2009

12. Disclosure to HIV+ Adolescents AAP advocates full disclosure Assume responsibility for health May increase adherence Affects treatment –Medication management –Sexuality and risk reduction Prevents unknowingly exposing others Research indicates positive outcomes –Decreased anxiety –Increased intention to self-disclose to sexual partners

13. Case Study I 12 yo female Outgoing, no significant cognitive or behavioral issues Both parents HIV+ Issues with adherence Reasons for not disclosing “ We’ll tell her when she is in her 20’s …don’t want to spoil her childhood” “Don’t want her to ask about our past” “She’s doing so well” No plan to disclose

14. Adolescent Support Group (with Silang DeFour)

15. Disclosure to HIV- Children Rates of parental disclosure vary widely – Mean ≈ 40 % in US across studies ≈ BUT, 60% children aware of parental status Disclosure age-related but varies widely –7-10 average age –Rates increase with age HIV- siblings of HIV+ children and adolescents –Who should know? Older and adult children –Have potential to offer most support –Anger toward person perceived to be responsible

16. Maternal Disclosure to Exposed but Uninfected Children Births to HIV+ women increasing dramatically –8700 in 2006 –7 HIV+ babies born in Florida in 2010 –Others, HIV- but exposed to HIV & ART Potential complications –Cardiac disease –Hearing loss –Attention, memory, visual spatial skills Ethical and legal issues –Maternal HIV status is PHI –“Child” awareness of potential health issues Initiate discussion of disclosure and potential health issues early in pregnancy and at follow-up

17. Case Study II 14 yo male Exposed but uninfected Participates in research studying effects of in utero exposure to HIV and ARVs Good student; no behavioral problems Mother with past history of HIV-related health problems she explained as “heart problems” Child has history of anxiety disorder, worries about mother’s health

18. TRACK Program Intervention to assist mothers with disclosing to children (6-12 years) Intervention 3 individual sessions & phone call Results Intervention group 33% more likely to disclose Reported appropriate emotional tone, ability to answer questions, helped child identify “safe” people Greater self-efficacy, increased communication with children, improved emotional functioning Children exhibited reduced depression and anxiety, increased happiness 18 Murphy, Armistead, Marelich, Payne & Herbec, 2011

19. Model of HIV Disclosure and Types of Social Relationships Sexual Relationships Anonymous, casual, or short term sexual relationships Beginning relationships Long-term, non- casual, committed sexual relationships NOT Disclosing (Bairan, et al., 2006)

20. Casual Partners vs Long-Term Relationships Factors influencing disclosure Partner type Location of sexual encounter HIV status of partner Personal characteristics Social vs. sexual intimacy ≈ 50 % of HIV+ adolescents do not disclose status No direct, consistent link between disclosure and lowered sexual risk behaviors HIV+ adolescent females believe disclosure shifts responsibility for prevention to partner (Marhefka, 2011)

21. Legal and Ethical Issues Florida Law Unlawful for HIV + person to have sexual intercourse with another without disclosing status Initial offense – 3 rd degree felony, > 5 years & $5,000 Multiple violations – 1 st degree felony, > 30 years & $10,000 No systematic enforcement 3 cases/year average in Florida from 1987-2010 Prosecutions in same-sex cases halted L.A.P. vs State of Florida, 2 nd District Court, Appellate Division (62 So. 3d 693) “Duty to Warn” The Ryan White HIV/AIDS Program requires that health departments show “good faith” efforts to notify the marriage partner of a patient with HIV/AID Provider-Patient Confidentiality

22. Case Study III 21 year old female Several male partners –2-3 casual –1 committed Never explicitly disclosed Consistent condom use UNLESS male refuses What if viral load –Undetectable? –>250,000? 22

23. Discussion Questions (from UF CARES Staff) What do you see as greatest challenges to disclosing? (from both patient and provider perspectives) What are the real consequences to a child of not knowing their status? What can I say to make a parent aware of the consequences of not disclosing? Do you feel we “give-in” to parents when we help them conceal their child’s diagnosis? What if the child had cancer? What about concealing their exposure (if HIV-)? What are the legal requirements? Ethical conflicts? What do you do when an adolescent or adult has not disclosed to their partner? Disclosure or protection, which should I focus on? Why? What should we really be doing to facilitate disclosure?