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

http://www.bhiva.org/chiva/frames/indexframes/index.html

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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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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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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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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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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


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


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

[email protected]

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CHIVA / KZN Support & Mentoring Initiative