CHIVA / KZN Support & Mentoring Initiative

1. Influences on Adherencein children and families living with HIV:Psychosocial and developmental factors CHIVA / KZN Support & Mentoring Initiative

2. 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

3. 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)

4. Children are neither mini adults nor are they all the same! Different approaches are required at different ages and in different contexts

5. 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

6. 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!

7. 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

8. 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

9. 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

10. 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

11. 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 . . . . .

12. Adherence Support: Practical and psychological approaches

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. Evidence of useful psychosocial interventions Contracts

23. Appendix: Age-appropriate interventions

24. 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 . . .

25. 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

26. 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

27. example What helps keep me well and strong? Use as many of the child’s own ideas as possible.

28. 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

29. example Give me a chance to voice my concerns and ask my own questions B’s questions from D. Melvin, PHP network, 2007

30. 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

31. Carer / Family child Health Services Community Good Partnerships of Care

32. see also: Posters produced by Dr. K. Naidoo for clinics in KZN explaining guidance on supporting disclosure to children.

33. 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 john@jve-designs.com