Transcript AIDS 2008 PowerPoint Template

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.
S.W.
A.
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
Kist1,
Macharia1,
Ahmed2,
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
Individual
Counseling
Institutionalized
Disclosure
Policies
Group
Counseling
Systems
Strengthening
for PSS
• Child-focused, tailored and need-based sessions
• Varied therapeutic approaches: play, art, sand etc.
• teaching aides and IEC for children
• Deliberate preparation for child and caregiver from point of
enrollment
• Post-disclosure monitoring and support
• Facility level and household level coordination
• Structured and age/audience specific
• Relationship formation
• Skills development, peer-support, self-acceptance
•
•
•
•
Staff technical capacity building
Development of PSS indicators and SOPs
Modification of tools
Improved documentation and coordination or case management
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
ART and Adherence
Disclosure ( why sick, meds etc)
stigma (isolation, neglect, abuse)
Food Security and Poverty
Relating with Adults
Categories/ Themes
Peer Comparison
Living with HIV
Self Image
Communication and Self Expression
Cure
Source of Infeection
Relationships and Sex
Depression
Circumcision
Future
Death
0
5
10
15
Frequency Reported
20
25
Findings
FGD: Caregiver Reported Description of their Children
After Mwangalizi Project as Compared to Before
Improved child’s interaction with others in
31 (100%)
household
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
Improved ability to understand the different needs
and experiences of your child
Improved ability to provide psychosocial support to
the child
Improved your emotional/psychological state of
mind
26 (84%)
29 (94%)
30 (97%)
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 childcentered 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
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
[email protected]