1. Helping Children to Cope
Paediatric Palliative Care
for Home Based Carers
Funded by
British High Commission, Pretoria
Small Grant Scheme

2. The Impact of HIV
HIV Infection
Caring for a Sick Relative
Orphaned

3. The Impact of HIV Sadness Fear & Anxiety Loneliness Abandonment Anger
Mistrust
Confusion

4. All Children are Different
A child’s ability to cope with these events
depends on:
Stage of development
Ability to Understand Events
Sense of control
Resilience
Love and Sense of Security

5. When a child is born, he starts a long journey of great change
Stage of Development
When a child is born, he starts a long journey of great change

6. Child Development
A lot of new things happen to a child as he travels on this journey!
He will start to watch, listen and learn
He will learn to sit, stand, walk and run
He will decide what he likes and what he dislikes
He will start to talk and to ask questions
At different points in this journey, a child will
Think differently about the world around him
Have different understanding about events affecting him

7. Children & HIV
Understanding the way children develop helps us to understand:
the ways different children think
the ways different children communicate
what illness means to a child
what children understand about death
This helps us to understand how different children with HIV:
respond to illness and death
how they cope
how we can help them

8. All Children are Different
Although all children are developing along the same journey
Some children may travel quickly
Some may travel more slowly
Some may reach the destination with no problems
Some children may get held up on the way
Some may experience stressful events on this journey
Children with HIV often have delayed development

9. Birth to 2 Years Dependent on parents Expresses himself through
non-verbal communication
Responds to adult non-verbal behaviour
©TALC

10. Birth to 2 Years Cannot understand what has happened
when someone has died
Will miss the love, touch, voice, smell and security of parent who has died
May show behaviour change
(cries, irritable, not sleeping)
or regression

11. 2 to 4 Years Mainly concerned with themselves and their own needs
Learning about objects and people
Still cannot understand concepts like life, death or friendship
Still not able to fully express feelings
Need short, simple sentences

12. 2 to 4 Years Can begin to understand something about death
Dead bird – no movement, breathing, no eating
It is not “sleep” as it cannot wake up
Think the dead person will come back

13. 2-4 Years Aware of changes in the way they are cared for
May feel abandoned
Cry, throw tantrums, cling to others, refuse to be touched
Need to know the truth about family and friends who have died
Behaviour changes (clingy, bed-wetting, insomnia, anger)

14. 4 – 7 Years
Start to explore the world outside their immediate environment
Develop a feeling for who they are
Understand about belonging to a family and having friends
Can now talk about their thoughts and feelings
Non-verbal communication must still be encouraged
Need simple, honest explanations and reasons
Must be allowed to ask questions
Imaginations develop
Threat to body or possessions causes great anxiety

15. 4-7 Years Still difficult to understand death is forever
May repeatedly ask “How” and “Why” a person died
Longing, sadness, grief & anger are normal
Fears about death (may not want to be alone, have lights off)
Anxiety or fear for care giver or self dying too
Able to believe in God
Death should be openly discussed, in ways understood
Regression and helplessness are common

16. 7-9 Years Much more ability to understand things clearly
Looking for meaning in the events of their lives
Eager to learn
Learning new skills boosts their self-esteem
Disappointed if unable to manage new challenges
Need lots and lots of acknowledgement, constructive criticism and praise

17. 7-9 Years
Need to know more facts about death (“death makes body shut down”, do not breathe, talk or eat)
Need to know all the causes of death
Now understand that death is forever – the person will never come back to them
Sadness and a sense of helplessness are most common
May still feel responsible for death
Fear another close adult to themselves may die

18. 9-12 Years Now understand that death is fully irreversible
Can understand what causes death and results of death
Abstract thoughts like heaven are clear
Generally knows difference between fantasy and reality
This leaves child helpless and out of control
Mourn in similar ways to adults
May deny death or look for a reason for it (blame, anger)
Need meaning to be given to the death

19. 13-18 Years Developing personality and sense of purpose in life
Transition from childhood to adulthood
Wants to belong and be accepted by peer group
Fear isolation
Preparing themselves to get involved in life

20. 13-18 Years Recognise death as final and irreversible
Idea that life may be limited or ended by disease is very threatening
Great fear and insecurity when faced with pain and death
May pity themselves
May talk about death and loss openly and appropriately
May appear confused, suppress feelings, show disbelief and denial

21. Sense of Control
A child with HIV experiences lots of events in which he has no sense of
control
Loss of parents
Sicknesses
Painful tests
Sent away to live with others
All these lead to emotions such as helplessness, confusion, anger
A child will cope better if he feels in control
Where possible, involve the child so that he feels in control

22. Resilience
The ability to “bounce back” after stressful and potentially traumatising events (Tolfree, 1996)
Resilient children are better able to cope with life’s adversities
All children have the potential to be resilient but it must be developed
Resilience should be encouraged and developed in all children with HIV

23. Developing Resilience
Provide them with Love & Security
Most effective way of helping children to cope with all that is going on around them!
Children with HIV may experience lots and lots of different emotions
All the drugs and technology in the world could never replace showing a child that they will always be looked after,
With lots and lots of love!

24. Developing Resilience
Spend time with the children
Listening to them instead of talking about them
Show an interest in them and what they do, think and feel
Play helps them to develop
Answer their questions – knowledge is empowering
Encourage them to discover new things and new interests

25. Developing Resilience
Teach them to Express Themselves
Children need opportunities to express how they are feeling, throughout the course of their illness
Emotions may vary from one visit to the next
May be unable to express their emotions through talk alone
Many other ways may be used in which children can express themselves very effectively

26. Expressing Themselves
Stories
Art
Play
Music
Memory Work

27. Developing Resilience
Prayer
There is always someone there for the child to talk to and who will listen
They can tell God all their worries and fears
They will feel less lonely
They will know God will always love them and take care of them and their loved ones

28. Remember! We often think we know what is best for a child
In many ways, children do need us to help them
But
children know best how they are feeling
and what they can and cannot tolerate
only they can tell you what is bothering them

29. Summary Every child is different Respect their point of view
Then we can :
Gain a true understanding of how the child is feeling
Provide them with a sense of control in events affecting them
Work out how best to help them cope with the events they face