hidden pain? people with learning disabilities who self-injure
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Hidden Pain? People with learning disabilities who self-injure. Pauline Heslop Norah Fry Research Centre, University of Bristol Fiona Macaulay Bristol Crisis Service for Women. What do we already know?. People without learning disabilities Research considering their views exists - PowerPoint PPT PresentationTRANSCRIPT
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Hidden Pain?People with learning disabilities who self-injure
Pauline Heslop
Norah Fry Research Centre, University of Bristol Fiona Macaulay
Bristol Crisis Service for Women
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What do we already know? People without learning disabilities
Research considering their views exists Self-injury has a clear function It is largely used as a coping strategy for dealing with
intense emotional distress Interventions: usually counselling or therapies, to
enhance self-esteem / develop a repertoire of coping skills
People with learning disabilities Little or no research considering their views Self-injury generally understood within a biological
framework Regarded as ‘challenging behaviour’ Interventions: often behavioural responses and
sometimes medication
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The purpose of the research
To find out more about the experiences of people with learning disabilities who self-injure, and their carers/supporters
To explore in what ways they have been supported by the services and professionals with whom they are involved
To identify ideas, and then produce resources, for training and policy development
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Research participants
25 people with learning disabilities (104 visits) Men and women Ages 14 – 65 (mean age = 34 years old) England, Scotland, Wales and N. Ireland Range of types of self-injury Range of circumstances (own home – secure unit)
Family members 7 linked to participants, 5 non-linked
Professionals21 linked to participants, 9 non-linked
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What people with learning disabilities say about why they self-injure
1. The circumstances leading up to self-injury
2. The feelings a person has before they self-injure
3. The particular functions that self-injury serves
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The circumstances leading up to self-injuryExternal factorsBeing in disempowering circumstances Lack of control within living environment
Interpersonal factorsBeing bullied Arguments
Internal factorsPhysical health issues Memories of difficult past experiences
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The circumstances leading up to self-injury: External factors
Being in disempowering circumstances
Not feeling listened to
Being told off
Being told what to do
Too many demands and
not enough support
Being treated like a child
People talking about you
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The circumstances leading up to self-injury: External factors
Lack of control within living environment
Other residents
Noise/too much going on
Lack of autonomy
Not much to do
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The circumstances leading up to self-injury: Interpersonal factors
Being bullied
Physically
Picked on
Name calling
Making fun of person
Being laughed at
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The circumstances leading up to self-injury: Interpersonal factors
Arguments
Arguing with someone else
Overhearing other arguments
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The circumstances leading up to self-injury: Internal factors
Physical health issues
Physical illness
Mobility impairment
Tiredness, exhaustion
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The circumstances leading up to self-injury: Internal factors
Memories of difficult experiences in the past
Abuse
Bereavement
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The circumstances leading up to self-injury
People with ld
Disempowering circumstances
Lack of control (in living environment)
Interpersonal issues
Internal – physical health / memories of past experiences
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The circumstances leading up to self-injury
People with ld Family carers
Disempowering circumstances
Lack of control (can’t do what wants to do)
Lack of control (in living environment)
Disempowering circumstances
Interpersonal issues Uncertainty/ change
Internal – physical health / memories of past experiences
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The circumstances leading up to self-injury
People with ld Family carers ProfessionalsDisempowering circumstances
Lack of control (can’t do what wants to do)
Uncertainty/ change
Lack of control (in living environment)
Disempowering circumstances
Lack of control (can’t do what wants to do)
Interpersonal issues
Uncertainty/ change
No particular reason - biological basis
Internal – physical health / memories of past experiences
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The feelings a person has before they self-injure
People with ld
Angry
Frustrated
Sad, depressed, low
Upset
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The feelings a person has before they self-injure
People with ld Family carers
Angry Frustrated
Frustrated Agitated
Sad, depressed, low
Angry
Upset Anxious
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The feelings a person has before they self-injure
People with ld Family carers Professionals
Angry Frustrated Frustrated
Frustrated Agitated Anxious
Sad, depressed, low
Angry Upset
Upset Anxious Sad, depressed low
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The function or meaning of self-injury
People with ld
Expression of emotional pain
Suicidal action / thoughts
Legacy of difficult feelings from the past
Control
Release/coping mechanism
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The function or meaning of self-injury
People with ld Family carersExpression of emotional pain
Expression of emotional pain
Suicidal action / thoughts
Attention-seeking / to get a reaction
Legacy of difficult feelings from the past
A response to change
Control The need to communicate something
Release/coping mechanism
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The function or meaning of self-injury
People with ld Family carers ProfessionalsExpression of emotional pain
Expression of emotional pain
Attention-seeking / to get a reaction
Suicidal action / thoughts
Attention-seeking / to get a reaction
The need to communicate something
Legacy of difficult feelings from the past
A response to change
Self-stimulation / habit
Control The need to communicate something
Expression of emotional pain
Release/coping mechanism
Some changing views
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Conclusions There are external, interpersonal and internal
factors that might lead up to a person self-injuring
People with learning disabilities, family carers and professionals may understand these factors differently
Family carers and professionals need to acknowledge anger on the part of people with learning disabilities
Bullying, the legacy of abuse and dealing with one’s emotions all need addressing as a matter of urgency
Difficult feelings ought not be dismissed as ‘attention-seeking’
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Messages from people with learning disabilities to supporters
Better communication
Better attitude towards us
Need for practical support too
Help to learn new strategies for distraction
Help to calm down
Access to support when needed
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For further information…
Fiona Macaulay
Bristol Crisis Service for Women
PO Box 654
Bristol BS99 1XH
Pauline Heslop
Norah Fry Research Centre
University of Bristol
3 Priory Road
Bristol BS8 1TX