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, 7 Independent Consultant Statistician

Background• 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

Description

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

Description• Intensified PSS strategies adopted to pre-existing program

structures

•Child-focused, tailored and need-based sessions

•Varied therapeutic approaches: play, art, sand etc.

•teaching aides and IEC for children

Individual Counseling

•Deliberate preparation for child and caregiver from point of enrollment

•Post-disclosure monitoring and support

•Facility level and household level coordination

Institutionalized Disclosure

Policies

•Structured and age/audience specific

•Relationship formation

•Skills development, peer-support, self-acceptance

Group Counseling

•Staff technical capacity building

•Development of PSS indicators and SOPs

•Modification of tools

•Improved documentation and coordination or case management

Systems Strengthening

for PSS

Description• Disclosure Protocol: Staged building client

readiness. 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

Findings: Child-Expressed Concerns

Death

Future

Circumcision

Depression

Relationships and Sex

Source of Infeection

Cure

Communication and Self Expression

Self Image

Living with HIV

Peer Comparison

Relating with Adults

Food Security and Poverty

stigma (isolation, neglect, abuse)

Disclosure ( why sick, meds etc)

ART and Adherence

0 5 10 15 20 25

Frequency Reported

Cat

ego

ries

/ T

hem

es

FindingsFGD: Caregiver Reported Description of their Children After Mwangalizi Project as Compared to Before Improved child’s interaction with others in household

31 (100%)

Improved child’s interaction with peers 30 (97%)Improved child’s emotional/psychological state 26 (84%)Improved child’s performance at school 29 (94%)Improved child’s willingness to attend clinic visits 29 (94%)Improved child’s willingness to take medication 30 (97%)

FGD: Caregiver Description of Mwangalizi Project’s Effect on Caring HIV-positive Children

Improved ability to discuss issues to do with HIV in the household

26 (84%)

Improved ability to understand the different needs and experiences of your child

29 (94%)

Improved ability to provide psychosocial support to the child

30 (97%)

Improved your emotional/psychological state of mind

30 (97%)

• 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

Findings

“Oh it has improved! For me, [my child] even asks ‘you know daddy these dates we’re going

to the clinic’…”

-Caregiver , Nairobi

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

Conclusions• Mwangalizi Project…

– Calls attention to the necessity of child-centered health models

– Demonstrates the link between psychological and clinical outcomes

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

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.

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.

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

AcknowledgementsSpecial 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