The workshop led by Dr. Mary Glover discusses the impact of chronic illness on children and families, emphasizing factors such as psychological adjustment, family dynamics, and cultural implications. It highlights the role of shame and exclusion experienced by adolescents with chronic illnesses, which can affect their social functioning and treatment adherence. Recommendations for clinical practice include providing parental support, utilizing group work, and employing mentors during the transition to secondary education.

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.