DoD/PEPFAR ART Program The Role of Psychosocial Support & Disclosure in pediatric ART – The ‘Mwangalizi’ Project, Kericho 7 th Annual Track 1.0 ART Program Meeting 4-6 August 2009 Dar es Salaam Tanzania Dr. Jonah Maswai Clinical Care Manager PEPFAR DoD Program South Rift Valley

Outline Background Pediatric ART Gaps ‘Mwangalizi’ project - Process - Achievements - Challenges Conclusion

SRV program

SRV PEPFAR Program 66% Female 10% Pediatrics 61% Female 10% Pediatrics

Pediatric care and treatment - Gaps 1. Failure to keep clinic appointments 2. Poor Adherence to ART Some of the reasons for the above Child not knowing their HIV status Stigma (since they are OVC) Inadequate info on HIV, ART & Adherence Different (irregular) guardians/caretakers 3. Disclosure: - Inadequate knowledge & skills to disclose to Paeds, by HCW and caretakers

Intervention - The ‘Mwangalizi’ Concept Aim: Improve Paeds ART Adherence & Disclosure with the help of a trained ‘Mwangalizi’ Qualities of ‘Mwangalizi’: - Initially: HIV +ve literate adult, living positively, attending clinic, & managing own Rx well - Now: expanded to include even HIV –ve parent/ guardian bringing own child to the same clinic. Role of ‘Mwangalizi’ - Link btwn clinic & household to: - Support child to keep appointments - Support child to take pills - Facilitate psychosocial support identified during home visits - Help guardian/caretaker to disclose

‘Mwangalizi’ – The Process The Child: - Criteria: Missed appointments, Failing therapy, OVC with no stable caretaker, total orphan, unaware of HIV status - Activities: Play/fun, HIV info; Children/ Adolescent meetings ‘Mwangalizi’: - Training: ‘Speak-for-the-child’ mentors’ - Attached to ~5 children from home region - Home visits 2x monthly (fill visit forms) - Monthly meetings – receive updates & address challenges Guardians/ Parents: - Training: ‘Family matters’ – how to communicate with children - HIV info, Adherence, Disclosure, introduced to ‘Mwangalizi’ - Consent for child enrollment, home visits HCWs: - Training on Paeds Psychosocial counseling, Families Matter, Disclosure

KDH Pilot Project: Highlights 1.Children/ Adolescents support group meetings - topics handled: HIV/AIDS, Disclosure and Stigma, Children’s Rights, ART treatment, Reproductive Health 2.Facilitation of Disclosure – 3 stages (v/i) 3.Families Matter : This training is to give caregivers and staff skills to discuss sexuality with the adolescent child. 4.Small library with books which the adolescent borrows, play materials e.g. toys, drawing and coloring materials, puzzles, indoor games.

Psychosocial Support: Achievements KDH Paeds ART Clinic: March enrolled, 398 on ARVs Mwangalizi enrollment: Rapid increase from 30 (May 2008) to 338 (March 2009) Age distribution: 33% are adolescents aged btwn 10 to 18 yrs. Waangalizi: 33 recruited, 28 HIV +ve, 5 are HIV –ve (caregivers) Meetings:  Btwn May 2008 and March 2009 there have been four caregivers meetings,  and three children/ adolescent support group meetings. The meetings address needs identified by ‘Waangalizi’ during home visits and issues identified by the children.

(Ct’n)  The introduction of consent forms, training of ‘Waangalizi’, clinic staff, and stakeholders in the community has helped improve data collection, reporting and monitoring at the clinic and especially adherence for children on HAART.  From the activities of the ‘Waangalizi’, the facility was able to link to two Community Based Organizations offering psychosocial support, chiefs, and community representatives in the two districts covered by the project.  Increased referral for psychosocial counseling from only 1 in May 2008 to a peak of 27 in December 2008.

Disclosure Process – 3 stages: 1.Preparation for Disclosure:  HIV/AIDS education is done to the caregiver first, and consent sought to proceed with the disclosure process.  The same information is shared with the child by the caregiver.  Testing and post test counseling is done to caregiver and the adolescent.  Follow up in consequent clinic visits. 2.Pre-test Counseling & Testing (confirmation & acceptance of status):  HIV educ & pre-test counseling is done to caregiver & child together  Consent sought to allow for testing of the child and the caregiver. 3.Post-test Counseling & follow-up.

Disclosure: Achievements Number of adolescents undergone full disclosure rose from 3% in May 2008 to 26% in March Increased attendance of the adolescent to the support group meetings from 15 to 70. They choose when to meet and what topics to discuss. Due to discussions from these meetings we have been able to link them up with Live with Hope Centre ( OVC partner) and Kericho Youth Centre (Adolescent Friendly program). Change of behavior as observed by the clinic staff and reported by their caregivers i.e. those adolescents who attend the meetings have shown an improvement in their relationship with their guardians, have gone back to school, improved interest in adherence to treatment. The adolescents feel they have a purpose in life, are open, able to talk about their HIV status with their close teachers and other peers in the clinic; and share their concerns/challenges at home/school with the clinic staff.

Challenges The number of adolescents enrolled are increasing and there is a need to incorporate OVC services within the CCC. Graduating the adolescents into the adult clinic Children’s rights violations sometimes difficult to follow up – especially if a close family member is the violator. Some parents/ guardians resist disclosure

Conclusion  Our experience suggests that Paeds ART adherence is feasible when integrated within an existing pediatric out-patient clinic which is supported by a health care team and ‘Waangalizi’.  Continuum of care and treatment for infants and children can be successfully facilitated by the ‘Waangalizi’ at the community level. The ‘Waangalizi’ have formed an effective link between the health workers, community and the caregivers.  Increased access to information on HIV/AIDS improves the acceptance to HAART treatment.  Continuous provision of follow up and adherence counseling ensures caregivers are updated on the current developments and improvement to overall care.

Acknowledgement: KDH, Mwangalizi Project Team, Waangalizi, Caretakers, the Children