1. Breaking the Silence: Approaches and Benefits of Intensifying Pediatric Disclosure and Psychosocial Support (PSS) in Clinical Settings in Kenya Through the Mwangalizi Pilot Project Author(s): N. Kist1, S.W. Macharia1, A. Ahmed2, E. Chester3, E. Chelimo3, P. Muigai4, A. Njoroge5, I. Tsikhutsu6, R. Omollo7 H. Dalton1 Institute(s): 1Academy for Educational Development (AED), Capable Partners Program (CAP) Kenya, Nairobi, Kenya, 2Bomu Medical Centre, Mombasa, Kenya, 3Academic Model Providing Access to Healthcare (AMPATH), 4Coptic Hospital Hope Center for Infectious Diseases, Nairobi, Kenya, 5Eastern Deanery AIDS Relief Program (EDARP), Nairobi, Kenya, 6Kericho District Hospital, Kericho, Kenya, 7IndependentConsultant Statistician

2. HIV+ children often have no knowledge of their status Implications of non-disclosure on: ART adherence clinic attendance Psychological and clinical health Pediatric HIV estimates: 100,000 – 150,000 (20% on ART) Pediatric-specific PSS lacking nationally 2010 activities prioritize universal pediatric HIV testing There is increased need to respond to the psychosocial implications Background

3. Description

4. Description • Real time evaluation (RTE) methodology was applied. • Data collected over 18 months: • Disclosures • Child-expressed concerns. • FGD and KII • CD4%, Height, weight, (not presented here) • Analyzed using ATLAS and STATA

5. Description • Intensified PSS strategies adopted to pre-existing program structures

6. Description • Disclosure Protocol: Staged building clientreadiness. Facility based with parallel home based support and monitoring • Exploration and Introduction Stage: setting roles and trust building between the child and counselor. • Understanding Stage:determining the level of understanding the child has about HIV and their health status • Action Stage:Actual disclosure preferably by the caregiver with assistance from the counselor as needed. • Post-disclosure monitoring and support is provided by Mwangalizi (home) and counselors (clinic) • Cultural specifications easily adopted into process

7. Findings: Child-Expressed Concerns

8. Findings • 3,174 enrolled • Mean age 6.4 years • Disclosure of 741 (23.3%) • FGD document improved: • ART Adherence • Clinic attendance • Emotional wellbeing • Reduced stigma • Support systems at household

9. Findings “Oh it has improved! For me, [my child] even asks ‘you know daddy these dates we’re going to the clinic’…” -Caregiver , Nairobi

10. Findings • FGD/KII link disclosure to child-ownership over health management • Participation in clinic assessments • Self-monitored adherence • Commitment to attend clinic • Improved health outcomes (see abstract CDE1291) “My child nowadays is very happy about taking the medication because he knows what is happening… to an extent that he even knows the time he’s supposed to take the medicine – even if I’m not around…” - Caregiver, Mombasa

11. Conclusions • Mwangalizi Project… • Calls attention to the necessity of child-centered health models • Demonstrates the link between psychological and clinical outcomes

12. Conclusions • Developing culturally sensitive approaches to disclosure is feasible • Must be coupled with intensified preparation and support services. • Can inform and prioritize development of national guidance • Asking children and caregivers directly • Testing various strategies at small scales with strong documentation and adaptive learning

13. Next Steps: Recommendations • Scale up of Pediatric Disclosure: phased approaches best capture disclosure as a process vs. event • Through open-ended exploratory processes. • Based on client readiness • The earlier on the better (≥5 years) • By the parent/caregiver depending on culture.

14. Next Steps: Recommendations • Child (Patient) Centered Programs vs. “Child Friendly”:critical for behavior formation. • Culture shifts in clinical management • Teaching aids and child friendly tools • Relationship building • Social activities and alternative methodologies of therapy • Age-specific support groups • Integrate relevant services • Reproductive health, positive prevention etc.

15. Next Steps: Recommendations • National Priorities for Pediatric HIV: Government leadership beyond issues of access • Culturally adaptive protocols and guidance • Minimum standards of service packages • Indicators for M&E

16. Acknowledgements Special Thanks to the PEPFAR Kenya office together with USAID for its leadership, support and innovation behind the conceptualization of Mwangalizi Project. The implementing teams at AMPATH, Bomu, Coptic, EDARP and KDH and for their hard work, cooperation and collaboration in the RTE process along with their dedicated teams of Waangalizi who serve families tirelessly! For More Information on this or previous reports related to Mwangalizi Project RTE contact: Nadia Kist, HIV/AIDS Technical Advisor The AED Capable Partners (CAP) Kenya Program PO Box 14500-00800 Nairobi, Kenya nkist@aed.org