The document summarizes research on understanding how treatment programs are structured to support pediatric adherence for tuberculosis (TB) meningitis (TBM) and HIV/AIDS. It identifies key actors and networks involved in treatment programs at two facilities in South Africa. Interviews revealed that a calendar adherence tool was useful for strengthening communication between healthcare workers and caregivers, engaging and educating children, and identifying domestic situations that impacted adherence. However, the HIV program could better incorporate social assessments and support systems to improve pediatric adherence. Overall, the tool shows promise for enhancing adherence when incorporated into program configurations, but may be limited by disease factors, healthcare systems, and patient volumes.

1. Supporting Pediatric Adherence Networks:
Understanding the Capacity of the Calendar Adherence Tool
Kate Okrasinski, BSc
Research Masters in Global Health
Athena Institute,VU Amsterdam
2013
Thursday, January 8, 15

2. Adherence
[ ]
, Paterson 2000, Gibb 2003
“the extent to which a person's behavior - taking medication,
following a diet, and/or executing lifestyle changes, corresponds
with agreed recommendations from a health care provider”
essential for the prevention of drug resistance, severe
disease progression, and death
Adherence to Long-TermTherapies - Evidence for Action,WHO 2003
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3. [ ]“Understanding factors related to poor adherence and intervening to
improve adherence is essential in order to maximize long-term
outcomes”
Chacko, 2010
Pediatric Adherence
Global challenge especially with chronic disease........
familial interventions
pharmacological interventions
treatment protocol revision
clinic accommodation
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4. Monthly
Monitoring
Education Reinforcement
Daily
Monitoring
What has been done to support pediatric adherence?
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5. successful treatment is configuration that works
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6. Aims of Research
Understand how treatment programs are structured to support adherence,
and how they can incorporate the adherence tool in practice to further
strengthen their program.
[ ]TBM [ ]HIV
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7. tuberculous meningitis
[ ]
Facility: Tygerberg Children's Hospital
Tertiary Hospital Bellville,Western Cape, SAProgram Status: Research Study
Program Inclusion: Selective Inclusion Program Design: -stable children in approved
family situations are treated at home and return to clinic once a month for
checkup, prescription renewal and evaluation to proceed with home treatment
Program Duration: 6-9moDisease Risks: -drug resistance -relapse, disease
progression-death
[ ]Schoeman 2009 van Elsland 2012
TB incidence is highest in the world
1000 per 100,000 population in Western Cape
TB Meningitis is the most severe consequence ofTB infection involving the
brain and spinal cord
Pediatric adherence to TB Treatment is 67%
Panlanduz 2003
Schoeman 2009
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8. Human ImmunodeficiencyVirus
ART Coverage in South Africa is 54%
Sub-Saharan Africa 26%
Interventions are needed to increase adherence[ ]
[ ]
Barnighausen 2011
POART 2011Adherence levels are 57-82%
Mellins 2004
Facility: TC Newman Clinic
Primary Care Clinic, Paarl,Western Cape, SA Program Status: Standard of
Care Program Inclusion: Universal inclusion Program Design: -children are
treated with ARVs at home and return every 1-2 months (depending on
adherence) for checkup and prescription renewal Program Duration: Lifetime
Disease Risks: - drug resistance -sever disease, opportunistic infection- death
van Elsland
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9. Support Isolate IncludeIgnore
Program structures: Incorporate positive or negative contributions of actors or networks to goal.
Actors: human and non-human elements that exert influence
Networks: the interaction of various actors.
[ ]
Understanding Treatment Program Configurations
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10. Understanding the Structure of a Program........
[ ]TBM [ ]HIV
Observations & Interviews
Map Programs
Identify Actors Determine Key Configurations
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11. Understanding how it works.......
NarrativesKey Configurations
how it is used
hopes for how it could be used
concerns of how it should not be used
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12. [ ]Results
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13. Mapping Programs
TBM HIV
Coordinating Nurse
Social Worker
Cellphone
Documentation
Local Clinic
Caregiver
Child
Doctor
Support
Medication
Transportation
Clinic
Pharmacy
Socio-economic status
Alcohol/Drug Abuse
Routine
Community
Disease
Research Assistant
Clinic Nurse
HIV Counselor
ANOVA Institute
Identification of Actors
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14. Common Networks Identified within Pediatric Adherence
Staff
Clinic
Doctor
Health Systems
Strengthening Inst.
Caregiver
Child
Medicine
Bitter
Number of Pills
ResponsibilityKnowledge
Disease
Manipulation
Long wait times
Poor Staff Attitudes
Research
PatientVolumes
Referral Culture
Passion for healthy children and communities
Socioeconomic
Status
Alcohol/Drug
Abuse
Community
stigma
secrecy
Poverty
no food
work
Routine
Support
Systems
School
Pity
Diversity of Patient Needs
Transportation
Grant Money
Innovation
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15. Monthly
Monitoring
Education
Reinforcement
Daily
Monitoring
TBM Observation with Parent in Clinic:
Mother indicated that she used the calendar and the information on the back
to explain what was happening to her daughters sibling.
HIV Counselor Interview:
“Most of the parents don't know what is HIV, really. They are taking ARV's.
They are coming to the clinic, they are, but really, they don't know in a simple
language like on their own.”
HIV Interview with Research Assistant/ Counselor:
If there were gaps, “the children tell you exactly what happened “Ok
on this day I didn't take I was there...”
TBM Interview with Coordinating Nurse:
Nurse describes simply collecting the calendar and not reviewing it. She
relies on the saliva iso screen to detect adherence issues,
TBMCaregiver Interview:
Caregiver enjoyed placing the stickers, it was a fun activity , Significantly more fun
than the chart she must fill out for her other daughters TB medication. It was an
activity, kept separate from the medicine and not used as a reward.
HIV Interview with Child:
It was incredibly fun. “I love stickers”. She told me she would come home and “do it
all” then look back over her work as she took the pills the rest of the month.
HIV Interview with Child:
“If there is no clock, no cellphone around, that calendar can also
help.”
TBM Interview with Caregiver:
Calendar is an activity, not a tool. It does not need help
remembering to administer the medication.
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16. Key Configurations of Adherence Identified
Alcohol/Drug Abuse
Community stigmatization
(need for secrecy)
Transportation
Support Systems
Grant Money
Socio-economic Status
Caregiver Routine
wor
k
Domestic StabilityChild- Doctor
Child- Caregiver
Child-Healthcare Staff
Healthcare Staff-Caregiver
Caregiver-Doctor
CommunicationHealth Systems Strengthening Institutions
Clinic
Healthcare Staff
Child
Caregiver
Child involvement in care
Responsibility
Engagement
[ ]Thursday, January 8, 15

17. Unstable Domestic Situations
wor
k
TBM Home Treatment Program
-Social Worker assessment of social conditions
-Exclusion Criteria: Alcohol/Drug use in home
-Caregiver routine:
-Caregiver is evaluated by presence in hospital before going
home, indicating that her routine can be patient focused.
-Support Systems included in evaluation
-Transportation and finical backing identified, contacted, and
committed support confirmed before release.
Isolated
Included
Pediatric Treatment of HIV
-No social worker assessment
-Limited exclusion of alcohol and drug abuse (only in extreme cases)
-No support systems identified, educated, or contacted
-Addressing Domestic Situations
-Counselors relied heavily on narrative or poor adherence measures
to determine conditions at home
Alcohol/Drug Abuse
Community stigmatization
(need for secrecy)
Transportation
Support Systems
Grant Money
Socio-economic Status
Caregiver Routine
Value added by Calendar Adherence Tool:
-Counselors used adherence tool to identify “high risk” domestic
situations
Quality of tool was used to “triage” children with little to no caregiver
support
-Direct conversations to specific events, led to direct problem solving
and discussions with caregivers.
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18. Supporting Communication
Value added by Calendar Adherence Tool:
-Connection of all healthcare workers, initiated by child showing their work
- Positively engage the child at their level
-Healthcare staff can easily ”speak out of one mouth”
-Pride, eager engagement when child is asked a question.
Child- Doctor
Child- Caregiver
Child-Healthcare Staff
Healthcare Staff-Caregiver
Caregiver-Doctor
TBM Home Treatment Program
-Communication is heavily supported by the Coordinating Nurse
-Doctor-Caregiver: Communication is initiated and encouraged by her
presence in the clinic visit.
-Caregiver-Healthcare Staff: Open and direct lines of communication facilitated
by bi-monthly ‘check-in’ phone calls from Coordinating Nurse to caregiver and
open access to call Coordinating Nurse with questions
-Child-Healthcare Staff: consistent relationship with one healthcare staff eases
hesitation
Pediatric Treatment of HIV
-Communication only happens with clinic nurse or counselor
-high burden of referrals to counselors, decreases their ability to meet patient
needs
-clinic visits lack narrative/discussion
-Doctors refer to nurses or counselors if problems are identified.
-child is not involved in care
Supported
Ignored
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19. Increasing Engagement
Value added by Calendar Adherence Tool:
- support the child's engagement with clinic - FUN!
- involve the child in their care, engage with the child in their care.
-accessible educational information on reverse
TBM Home Treatment Program
-Knowledge, and understanding of disease and treatment is
necessary for participation in theTBM HomeTreatment Program
-Calendar tool is not inhibited by stigmatization and disclosure and
supports the education with published information to support this
education.
-Nature of disease and fear of relapse drives connection
-Healthcare is accessed easily and personably with direct access to
Coordinating Nurse
Pediatric Treatment of HIV
-strategic plans to decrease wait times
-supported initiatives to create “Child Friendly Clinics”
-play toys
-teen support groups
-initiatives to improve ‘staff attitudes’ and create a positive experience for
patients
-desire to involve children in their care, and increase a since of personal
responsibility
Supported
Isolated
Supported
Ignored
Health Systems Strengthening Institutions
Clinic
Healthcare Staff
Child
Caregiver
Child involvement in care
Responsibility
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20. [ ]Promising Future
Qualitative Research SE van Elsland PhD Candidate
Analysis in different settings
different conditions
more perspectives
Dynamic technology that can interact with different actors, and strengthen or
bridge different networks can support configurations that are constrained by
disease, healthcare systems capacity or patient volumes. Helping support
families, children and pediatric adherence.
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21. ThankYou
Staff
Clinic
Doctor
Health Systems
Strengthening Institutions
Caregiver
Child
Medicine
Disease
Socioeconomic
Status
Alcohol/Drug
Abuse
Community
Routine
Support
Systems
Transportation
Grant Money
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