Influences on Adherence
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Influences on Adherence in children and families living with HIV: Psychosocial and developmental factors. CHIVA / KZN Support & Mentoring Initiative. Adherence: What is it?. Adherence to ARVs means:. Taking ARVs exactly as directed, everyday – always! At the correct time

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Chiva kzn support mentoring initiative

Influences on Adherencein children and families living with HIV:Psychosocial and developmental factors

CHIVA / KZN Support & Mentoring Initiative


Adherence what is it

Adherence: What is it?

Adherence to ARVs means:

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 what is it1

Adherence: What is it?

Adherence to care and treatment means:

  • 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)


Children are neither mini adults

Children are neither mini adults

nor are they all the same!

Different approaches are required at different ages and in different contexts


Adherence evidence and advice

Adherence: Evidence and Advice

from research on chronic illness

  • 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


The wheel of influences

the

condition

or illness

illness

episodes,

stigmatising

size, number

colour, frequency,

side-effects

carer

strengths and

vulnerabilities

the

treatment

task

young

person

temperament,

age,

needs

TAKING

THE

PILLS!

understanding

control

communication

style

wider

system

community

parent

carer

family

available

support

attitudes

and beliefs

relationship

with health

providers

The Wheel of Influences

taking medicines is a concern in all chronic illnesses!


What is known

What is known:

Main influences

  • Those to do with medicines

Those to do with the young person

Those to do with the family

Those to do with the community


Adherence evidence and advice1

Adherence: Evidence and Advice

factors to do with medicines

  • 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


Adherence evidence and advice2

Adherence: Evidence and Advice

factors to do with the young person

  • 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


Adherence evidence and advice3

Adherence: Evidence and Advice

factors to do with the family

  • 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


Adherence evidence and advice4

Adherence: Evidence and Advice

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 . . . . .


Adherence support

Adherence Support:

Practical and psychological approaches


Enhancing adherence

Enhancing Adherence:

Changing the balance in the wheel

  • 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


Maintaining adherence

Maintaining Adherence:

Separate . . .

Getting StartedandStaying On Track

Check:

  • Present support

  • Previous experiences

    • illnesses

    • taking medicines

  • Understanding

  • What else is happening

  • Any extra preparation

Check:

Side effects

Practicalities

Recording Progress

Need for extra support

Need to update understanding

Openly acknowledge success


Maintaining adherence1

Maintaining Adherence:

Medication Specific Factors

Getting StartedandStaying On Track

Check:

Consider individual situation of child and family

Give regimes as simply as possible

Do taste tests

Check swallowing

Anticipate problems

Check:

Timing of medicines to fit in with child’s daily routines

Prompts for remembering

Avoiding hiding medicines but maintain confidentiality


Maintaining adherence2

Maintaining Adherence:

Younger Child / Family

Getting StartedandStaying On Track

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:

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


Adherence issues

Adherence Issues:

Psychological approaches for older children

  • 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


Maintaining adherence3

Maintaining Adherence:

Practical and Educational

Adherence helpers:

Charts

Diaries

Calendars

Timers and bleepers

Colour coding

Pill slicers

Pill crushers

Medicine boxes

Pictures

Stories

Education / Support:

Regular contact

Leaflets

Charts

Pill swallowing

Training parents/carers

Updates about HIV

Updates about medicine

Groups for peer support and education


Adherence

Adherence

Psycho-Educational Component

  • 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


Summary

Summary

  • 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


Evidence

Evidence

of useful psychosocial interventions

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 child

Update knowledge

Sharing responsibility

Giving more control

Peer support

Recording success

Encouraging honesty

Fitting in with life demands

Motivational not punitive

Contracts


Evidence1

Evidence

of useful psychosocial interventions

Contracts


Appendix

Appendix:

Age-appropriate interventions


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 . . .


Example

height

weight

example

When you come to the clinic the nurse checks to see how you are growing –

medicines help you to stay strong

and


6 10 years i can do this

6 – 10 years: “I CAN do 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


Example1

example

What helps keep me well and strong?

Use as many of the child’s own ideas as possible.


Older children teenagers

Older 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


Example2

example

Give me a chance to voice my concerns and ask my own questions

B’s questions from D. Melvin, PHP network, 2007


Example3

I’m staying healthy!

CD4 / White Cell %

The STRONG Ruler

The COOL Ruler

Viral Load 5%

HELP!!!

I’ve kept my germ quiet!

example

Involve the child in recording results – The Cool And Strong Rulers


Good partnerships of care

Carer / Family

child

Health Services

Community

Good Partnerships of Care


See also

see also:

Posters produced by

Dr. K. Naidoo

for clinics in KZN

explaining guidance on supporting disclosure to children.


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 Africa

April 2009

[email protected]


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