Realizing Pediactric Adherence in TBM and HIV Home Treatment: 2013 Internship Research

Supporting Pediatric Adherence Networks: Understanding the Capacity of the Calendar Adherence Tool

Kate Okrasinski, BScResearch Masters in Global Health

Athena Institute, VU Amsterdam2013

Thursday, January 8, 15

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-Term Therapies - Evidence for Action, WHO 2003


http://apps.who.int/medicinedocs/en/d/Js4883e/

http://apps.who.int/medicinedocs/en/d/Js4883e/

[ ]“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 interventionspharmacological interventions treatment protocol revision

clinic accommodation


Monthly Monitoring

Education Reinforcement

DailyMonitoring

What has been done to support pediatric adherence?


successful treatment is configuration that works


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


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 of TB infection involving the brain and spinal cord

Pediatric adherence to TB Treatment is 67%Panlanduz 2003

Schoeman 2009


Human Immunodeficiency Virus

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 ClinicPrimary 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


Support Isolate Include Ignore

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


Understanding the Structure of a Program........

[ ]TBM [ ]HIV

Observations & Interviews

Map Programs

Identify Actors Determine Key Configurations


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


[ ]Results


Mapping Programs

TBM HIV

Coordinating Nurse

Social Worker

Cellphone

Documentation

Local Clinic

Caregiver Child

DoctorSupport

Medication Transportation

Clinic Pharmacy

Socio-economic status Alcohol/Drug Abuse

Routine Community

Disease

Research Assistant

Clinic Nurse

HIV Counselor

ANOVA Institute

Identification of Actors


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

Patient Volumes

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


Monthly Monitoring

Education Reinforcement

DailyMonitoring

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.


Key Configurations of Adherence Identified

Alcohol/Drug Abuse Community stigmatization(need for secrecy) Transportation Support Systems Grant Money Socio-economic Status Caregiver Routine

work

Domestic StabilityChild- Doctor Child- Caregiver

Child-Healthcare Staff Healthcare Staff-Caregiver

Caregiver-Doctor

Communication Health Systems Strengthening Institutions

Clinic Healthcare Staff

Child Caregiver

Child involvement in care Responsibility

Engagement [ ]Thursday, January 8, 15

Unstable Domestic Situations

work

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.


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


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 the TBM Home Treatment 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


[ ]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.


Thank You

Staff

Clinic

Doctor

Health Systems Strengthening Institutions

Caregiver

Child

Medicine

Disease

Socioeconomic Status

Alcohol/Drug Abuse

Community

Routine

Support Systems

Transportation

Grant Money


Realizing Pediactric Adherence in TBM and HIV Home Treatment: 2013 Internship Research

Healthcare

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