CHIVA / KZN Support & Mentoring Initiative
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Transcript of CHIVA / KZN Support & Mentoring Initiative
Influences on AdherenceInfluences on Adherencein children and families living with in children and families living with
HIV:HIV:
Psychosocial and developmental factors
CHIVA / KZN Support & Mentoring InitiativeCHIVA / KZN Support & Mentoring Initiative
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Adherence: What is it?Adherence: What is it?
Taking ARVs exactly as directed, everyday – always!
At the correct time At the correct dose With or without food as directed Taking every dose of the medicine
No missed doses
Adherence to ARVs means:
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Adherence: What is it?Adherence: What is it?
Attending on the correct date for clinic appointment
Attending on the correct time for clinic appointment
Following dietary advice Taking Bactrim prophylaxis Getting depo-provera injection for
women of childbearing age taking Efavirenz (Stocrin)
Adherence to care and treatment
means:
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Children are neither mini Children are neither mini adultsadults
nor are they all the same!
Different approaches are required at Different approaches are required at
different ages and in different contextsdifferent ages and in different contexts
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Adherence: Evidence and Adherence: Evidence and AdviceAdvice
Adherence is a complex process requiring practical and psychosocial interventions
Not always related to severity of illness or impact on life
Difficult to measure Social and family factors important –
communication styles and nature of support Issues of ‘control’ may be important for older
children Sharing responsibility Adolescence – often levels of adherence are
poorest during this time
from research on chronic illness
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theconditionor illness
youngperson
parentcarerfamily
widersystem
community
thetreatment
task
The Wheel of InfluencesThe Wheel of Influences
TAKINGTAKINGTHE THE
PILLS!PILLS!
illnessepisodes,
stigmatising
temperament,age,
needs
understanding
control
communicationstyle
carer strengths and vulnerabilities
attitudesand beliefs
availablesupport
relationshipwith healthproviders
size, numbercolour, frequency,
side-effects
taking medicines is a taking medicines is a concern in all chronic concern in all chronic
illnesses!illnesses!
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What is known:What is known:
Those to do with medicines
Main influences
Those to do with the young person
Those to do with the family
Those to do with the community
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Adherence: Evidence and Adherence: Evidence and AdviceAdvice
Taste, size, frequency, number of pills, volume of liquid, colour
When and how to take (access to water, storage etc)
Consequences – immediate and longer-term
Being open / hiding medicines Prophylactic medicines don’t
always show immediate benefits
factors to do with medicines
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Adherence: Evidence and Adherence: Evidence and AdviceAdvice
Anxiety and / or confusion causing vulnerability
Prior negative experiences of being ill, taking medicines etc.
Understanding of the reasons for taking medicines
Who is there to support the young person?
Other behavioural or developmental difficulties
factors to do with the young person
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Adherence: Evidence and Adherence: Evidence and AdviceAdvice
Has there been continuity of care for the child?
How are the child’s general routines and behaviour managed?
Who else in the family is taking medicine, and how well have they been managing?
How does the family communicate together and with the child?
Are there other demands on the family such as other children or practical problems
Beliefs about condition and medicines
factors to do with the family
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Adherence: Evidence and Adherence: Evidence and AdviceAdvice
HIV specific factors Stigmatism and associations surrounding HIV
Affects secrecy and access to support Affects child’s knowledge about what is happening Adverse or negative experiences when HIV in family
Family Condition Losses in family Changes in circumstances and carers Who else in community can support child and carer? Contact with others living with HIV Successful role models and support networks Practical resources (such as storing medicines)
ARV medicines are demanding and need to be taken every day, every day, every day . . . . .
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Adherence Support:Adherence Support:Practical and psychological approaches
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Enhancing Adherence:Enhancing Adherence:
Welcome honesty when discussing difficulties with medicine taking
Talk about things having negative influence on adherence (such as hiding medicines)
Identify who is sharing responsibility with the child
Avoid blaming children or labelling families as ‘bad’ adherers – it’s a difficult task
Acknowledge how well child and carer are doing
Be confident and optimistic about the future
Changing the balance in the wheel
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Maintaining Adherence:Maintaining Adherence:Separate . . .
Getting StartedGetting Started and Staying Staying On TrackOn Track Check:Check:
Present support Previous
experiences illnesses taking medicines
Understanding What else is
happening Any extra
preparation
Check:Check:
Side effects Practicalities Recording Progress Need for extra
support Need to update
understanding Openly
acknowledge success
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Maintaining Adherence:Maintaining Adherence:Medication Specific Factors
Getting StartedGetting Started and Staying Staying On TrackOn Track Check:Check:
Consider individual situation of child and family
Give regimes as simply as possible
Do taste tests Check swallowing Anticipate
problems
Check:Check:
Timing of medicines to fit in with child’s daily routines
Prompts for remembering
Avoiding hiding medicines but maintain confidentiality
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Maintaining Adherence:Maintaining Adherence:Younger Child / Family
Getting StartedGetting Started and Staying Staying On TrackOn Track Check:Check:
Involve children in process but don’t give them sole responsibility
Good preparation for getting started successfully
Help to establish a daily routine
Support for carer – both emotional and practical
Check:Check:
Encourage good role modelling (eg carer and child taking medication together)
Encourage openness about difficulties – better to pick them up early
Offer praise / reward for completing task
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Adherence Issues:Adherence Issues:
Check young person’s understanding of condition and the role that medicines play
Teach understanding of factors that may get in the way of adherence
Identify the person in the family who shares responsibility with the young person
Group focused peer support helps Focus on the future and what the young
person can do now to achieve
Psychological approaches for older
children
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Maintaining Adherence:Maintaining Adherence:Practical and Educational
Adherence Adherence helpers:helpers:
Charts Diaries Calendars Timers and
bleepers Colour coding Pill slicers Pill crushers Medicine boxes Pictures Stories
Education / Education / Support:Support:
Regular contact Leaflets Charts Pill swallowing Training
parents/carers Updates about HIV Updates about
medicine Groups for peer
support and education
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AdherenceAdherence
Keeping well How the immune system works What is HIV Prevention and transmission Why medication has been started How the medication works Measures: CD4 count / Viral load Discuss meanings of ‘undetectable’ and
‘resistance’
Motivational approaches
Psycho-Educational Component
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SummarySummary
Adherence is not a single event Many factors contribute to successful adherence,
but confidence and praising success are important Maintaining adherence is often more difficult than
starting well Open communication and support in family is as
important as child’s knowledge of HIV Give more responsibility to child as age increases,
but should still have someone to share the responsibility with
Update child’s knowledge about HIV and medicines directly as age increases – use of pictorial materials
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EvidenceEvidenceof useful psychosocial interventions
younger child:younger child: Facilitate open
discussions Help managing
behaviours Sharing
responsibilities Getting into a
routine Parental role
models Parental adherence Attending to
success Avoiding coercion,
bribes, threats
older childolder child Update knowledge Sharing
responsibility Giving more control Peer support Recording success Encouraging
honesty Fitting in with life
demands Motivational not
punitive Contracts
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EvidenceEvidenceof useful psychosocial interventions
ContractsContracts
Young personClinic Nurse
Doctor
Significant Other
(parent / partner / mentor)
I will .... We will .... I will help by .....
How to Achieve:
How to monitor:
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Appendix:Appendix:Age-appropriate interventions
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4 – 6 years: What Helps?4 – 6 years: What Helps?
Support carer in providing reassurance along with routines and aideas for managing any difficult behaviour
Use carer / parent as a role-model for taking medicines
Routines and familiar things Making connections for correct
understanding and dispelling false links Taking medicines are to help me stay well
and strong – NOT because I have done something wrong . . .
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exampleexampleWhen you come to the clinic the nurse checks to see how you are growing –
medicines help you to stay strong
height
and weight
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6 – 10 years: “I CAN do 6 – 10 years: “I CAN do this . . . “this . . . “
At the beginning, help with practice swallowing pill school
Use of practical ideas charts / timetables for medicine taking
Greater understanding of health and what it means for them
Still need shared support to take medicines
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What helps keep me well and strong?Use as many of the child’s own ideas as possible.
exampleexample
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Older children & teenagersOlder children & teenagers
Provide opportunities for gradually taking more responsibility Practice and reminders
Don’t patronize but appeal to intelligence Tell consequences of long-term non-
adherence Practical reminders
Alarms, text reminders etc Consider medicine buddy system or
meeting others in same situation for supporting adherence
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exampleexampleGive me a chance to voice my concerns and ask my own questions
B’s questions from D. Melvin, PHP network, 2007
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HELP!!!
exampleexampleInvolve the child in recording results – The Cool And Strong Rulers
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
Th
e CO
OL
Ru
ler
Viral Load 5%I’ve kept my germ quiet!
25%
20%
15%
10%
Th
e ST
RO
NG
Ru
ler
CD4 / White Cell %
I’m staying healthy!
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Good Partnerships of CareGood Partnerships of Care
Carer / FamilyCarer / Family
Health Health ServicesServices CommunityCommunity
childchild
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see also:see also:
Posters produced byDr. K. Naidoo
for clinics in KZNexplaining guidance on supporting
disclosure to children.
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Acknowledgements:Acknowledgements:
Original presentation authored by UK Clinical psychologists working with
children and families living with HIV for the Paediatric HIV Psychology (PHP) Network
Diane Melvin, Jenny Miah, Brigid Hekster,Debbie Levitt, Dean Krechevsky, Marcelle Moore
Revised 2009
This presentation amended and re-designed by John Edge and Candy Duggan
for CHIVA AfricaApril 2009