1. Listen Up: What Youth Living with HIV (YLWH) Need To Achieve 90-90-90 IAS 2016, Durban, South Africa HIV Disclosure – Learning and Sharing Your Status Lisa M. Butler, PhD, MPH, PhD Institute for Collaboration on Health, Intervention and Policy, University of Connecticut

2. Benefits of Disclosure ✤ Reduced rates of emotional and psychological distress ✤ Improved engagement in care & medication self-management ✤ Improved ART adherence ✤ Reduced morbidity & mortality ✤ Yet — only 2% - 40% of HIV+ children have been told their HIV status by 12 years old

3. What stops caregivers from talking to their child about their child’s HIV+ diagnosis? ✤ Belief / concern that child is not able to understand or cope with their diagnosis; ✤ Belief that non-disclosure will protect child from social rejection, depression; ✤ Fear of being questioned about their own HIV status - or about what happened to the child’s mother if caregiver is not biological mother ✤ Concern that child will not maintain secrecy which could lead to negative social effects from family/community reaction to child and/or family; ✤ Uncertainty regarding how to start the discussion or answer questions; ✤ Negative experiences in disclosing own HIV+ diagnosis to others.

4. Lay Counselor-Led Group Sessions x 3 / 3 hours each 1.Understanding child development, age appropriate communication, HIV and AIDS, ART basics 2.Developmental approach to disclosure; identifying barriers & ways of overcoming them; talking with children about difficult topics 3.Guidelines for appropriate disclosure; anticipating and coping with child and caregiver reactions to disclosure; strategies for supporting children post-disclosure Monthly Dyad Sessions x 3 / 1 hour each ✴ Lay counselor-led, child centered Booster group & dyad sessions DISCO-Kids Dialogue Intervention to Improve Communication & Openness

5. Each session included: participatory activities; role plays; story telling and reflection; relaxation/mindfulness activities; homework Materials used: facilitator’s guide visual materials & handouts video DISCO-Kids Intervention Activities and Materials

6. DISCO-Kids Intervention Activities and Materials The Power of Knowing Experiences of youth and caregivers with pediatric HIV disclosure http://vimeo.com/88422878

7. Ongoing study – to be completed September 2016 300 caregiver-child dyads enrolled Odds-ratio for the effect of treatment assignment on disclosure: 78 (95% CI 18-338, P<0.0005) DISCO-Kids Preliminary Results Full and Accurate Disclosure by 6 Months Amongst First 144 Children Enrolled GroupTotal Control 13/69 (19%) Intervention 67/75 (89%)

8. ✤ DISCO-Kids is feasible and highly acceptable to caregivers and children 7- to 12- years old in an urban setting in Uganda; ✤ Majority of caregivers in intervention group reported disclosing to children within a month of completing the group sessions; ✤ Overall positive responses by both caregivers and children to intervention and experience of disclosure ✤ Adequate referral mechanisms are needed for children and caregivers who experiences heightened distress following disclosure or other consequences of disclosure; ✤ HIV+ children need continued support following disclosure from caregivers and health providers - tailored interventions for younger adolescents are needed; DISCO-Kids Conclusions

9. Acknowledgements Co-Investigators: Philippa Musoke, MBChB, PhD, Makerere University-Johns Hopkins University Research Collaboration; Rachel King, PhD, MPH, University of California San Francisco; Monica Etima, MBChB, MMed, Makerere University-Johns Hopkins University Research Collaboration; Eric Vittinghoff, PhD, University of California San Francisco Advisors: Mary Glenn Fowler, MD, Johns Hopkins University; Michael Boivin,PhD, Michigan State University Key Contributors to Manual and Materials: Hilary Kromberg, Robert Inglis, and Richard Steele at Jive Media Africa; Stephanie Thomas, Sandy Watt, and Sindisiwe Mkhabela at Zoë-Life; Robyn Hemmens and Rachel Rozentals-Thresher at dlalanathi; Gracia Nokhaya Makiwane at the Sinomlando Centre for Oral History and Memory Work; Paul Bangirana at Makerere University; Linzi Rabinowitz at eMPathy Trust, Southern Africa; Bev Killian at the University of KwaZulu-Natal, Pietermaritzburg, Berenice Meintjes, and Jaameeta Kurji. Funding: The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (1R01HD074261, PI: Butler); Project SOAR (Cooperative Agreement AID-OAA-14-00026), which is made possible by the generous support of the American people through the President’s Emergency Plan for AIDS Relief (PEPFAR) and United States Agency for International Development (USAID); Funding for the film used as part of the study was provided by the Boston Children’s Hospital Aerosmith Endowment Fund. We are extremely grateful to the DISCO-Kids Study Team and to all of the study participants without whom this study would not be possible. The contents of the presentation do not necessarily reflect the views of USAID, NICHD or the United States Government.