A workshop on working with children and young people who have a chronic illness delivered by Dr Mary Glover att eh European Association for Counselling Conference in Malta April 2014

1. Working with children and young
people experiencing chronic illness
Workshop: Dr Mary Glover
Newman University, England.

2. Chronic Illness: Visible or non-visible
• Gender
• Culture
• Age of onset
• Family functioning
• Social functioning
• Psychological adjustment

3. Psychological adjustment
• Developmental issues
• Psychological adjustment within the family
• Psychological adjustment with peers
• Constructing self
• Self narrative

4. Developmental issues
• Attachment:
• Early onset of chronic illness potentially
disrupts attachment;
• Parenting may become ‘medicalized’
• Long periods of hospitalization reduce
opportunities for social learning
• Physical incapacity impinges on interaction

5. Family Patterns
• Families exist in different forms
• The extent of their ability to function is
determined by a number of factors
• Chronic illness is an added factor, which acts
as a stressor in some families
• Where a particular stress causes strain will
vary according to culture, life history and
concurrent problems.

6. Family Patterns
Role focussed dynamic
- What you do is more
important to the system
than your individual
identity
- Family function is help
up to scrutiny
Dynamic focussed on
individuals
- Individual needs are
important
- Individuals in the family
are held up to scrutiny

7. Family Dynamics
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8. Family Dynamics: [A child may carry a parent’s
identity]
Didn’t she do well
[I am a good parent]
She had better get
It right next time
[To show that
I am a good parent]
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9. Family Dynamics
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Why can’t he
get it right?
[I am a bad
parent]
He has done so
badly
[I am a bad parent]

10. Family Dynamics
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I‘ll make him pay for this

11. The impact of illness on the family
Finance
Work
Dynamics
Environment
Medical care

12. The impact of illness on the family:
• Beliefs about illness
• Social function and poverty
• Cultural implications
• Helplessness
• Acting out psychological problems

13. Culture and illness
Power Dynamics
Use of spoken language
- The language of illness infers loss [being less
than]
Body language
- Being defined as a part of an ‘out group’
Environment
- Medical settings and medical equipment at
school and home.

14. Family Dynamics
Individual’s with diabetes can hold the family
guilt and shame.
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15. Chronic illness and shame:
research based evidence
• Isolation
• Feeling Different
• Body Image
• Being Diminished
• Feeling Exposed
• Being Excluded

16. Chronic illness in adolescence: Issues
of shame
• Shame impacts on the psycho-social
functioning of adolescents with chronic illness
• Shame impacts on decisions related to
treatment adherent behaviour

17. Feeling Misunderstood: research
evidence
• “Because I was like … they treated me older
than I was”
• “Most of my friends say it must be good to
miss school, but they don’t understand”
• “Sometimes people would say I wish I was you
to get out of school, if they they really knew
they wouldn’t”

18. Body image and shame: research
evidence
“I get bullied because I’m a freak”
“They measure your willy and testicle size”
“I’m hairy, they call me hairy, it’s awful man – I
bet they tease you about your tube …… don’t
deny it, if they haven’t they will….. Make you cry
so you want your mum”

19. Feeling excluded
• “You couldn’t go out at night, because you
were tired all the time”
• “If your mates eat it you need to”
• “Like I can’t play rugby, or anything. I get tired
and everything more than other people, I
can’t play sports for long”

20. Feeling diminished
• “I’m small”
• “There’s nobody to fight for me, they call me
names about sexual organs and the way I look
and they say I can’t fight, I haven’t got a friend
to fight for me”
• “We don’t grow”

21. Being Bullied
• “They tell you to go and eat tablets”
• ‘He makes fun of us, calls names then throws
water at us, then when we do he starts crying
… says don’t get my lines wet. He starts
things, it’s because he smells, it’s his medicine
makes him smell”

22. Feeling Different
• “You can’t have it and that’s bad I really want
chocolate”
• “Clinic is bad because you have to know abut
machines and things”
• “ You have to be careful of your lines and
things”

23. Naming the shame
“You get ashamed of some things … like
everybody knows about you and it’s horrible”
“Taking tablets shows your not normal”

24. So How Does This Influence
Behaviour?
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25. Aggression v withdrawal
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26. Defenses against Shame
• DISAPPEARING [I wanted the ground to swallow me
up]
• BEHAVING IN A SHAMELESS MANNER [I don’t care]

27. Chronic illness and treatment
adherence
• Figures highly in reasons for referrals to
psychological services
• Choices made now influence the course of an
illness and life expectancy
• Vulnerable during adolescence when peers
are the reference group

28. Key Issues in Shame and Adherence
• Adherence is associated with being part of an ‘out
group’
• Treatment does not ameliorate body shame, and
may increase it
• Adherence is associated with isolation
• Treatment does not help with psycho-sexual function
• Most participants said they needed parents to give
then their medication [if only sometimes]

29. Issues for clinical practice
• Adolescents need the support of parents or
another trusted adult in order to manage
treatment
• Transition from junior to secondary education
is a vulnerable time – it may be cost effective
to employ youth workers / mentors to cover
this period

30. Issues for clinical practice
• Group work may be the treatment of choice
• Evidence suggests that group support
ameliorates shame
HOWEVER
This can be a risk because where issues of
shame are figural they can be acted out.