DoD/PEPFAR ART Program
The Role of Psychosocial Support & Disclosure
in pediatric ART – The ‘Mwangalizi’ Project,
Kericho
7 Annual Track 1.0 ART Program Meeting
th
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 2009 - 869 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.
2.
3.
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.
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.
Post-test Counseling & follow-up.
Disclosure: Achievements
• Number of adolescents undergone full disclosure rose from 3%
in May 2008 to 26% in March 2009.
• 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