Working with children and young people experiencing chronic illness

Workshop: Dr Mary Glover Newman University, England.

Chronic Illness: Visible or non-visible

• Gender• Culture• Age of onset• Family functioning• Social functioning• Psychological adjustment

Psychological adjustment

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

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

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.

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

Family Dynamics

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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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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]

Family Dynamics

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I‘ll make him pay for this

The impact of illness on the family

Finance

Work

DynamicsEnvironment

Medical care

The impact of illness on the family:

• Beliefs about illness• Social function and poverty• Cultural implications• Helplessness• Acting out psychological problems

Culture and illness

Power DynamicsUse 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.

Family Dynamics

Individual’s with diabetes can hold the familyguilt and shame.

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Chronic illness and shame: research based evidence

• Isolation• Feeling Different• Body Image• Being Diminished• Feeling Exposed• Being Excluded

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

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”

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”

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”

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”

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”

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”

Naming the shame

“You get ashamed of some things … like everybody knows about you and it’s horrible”

“Taking tablets shows your not normal”

So How Does This Influence Behaviour?

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Aggression v withdrawal

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Defenses against Shame

• DISAPPEARING [I wanted the ground to swallow me up]

• BEHAVING IN A SHAMELESS MANNER [I don’t care]

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

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]

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

Issues for clinical practice

• Group work may be the treatment of choice• Evidence suggests that group support

ameliorates shameHOWEVERThis can be a risk because where issues of shame are figural they can be acted out.