Hidden Pain? People with learning disabilities who self-injure Pauline Heslop Norah Fry Research Centre, University of Bristol Fiona Macaulay Bristol Crisis.

1

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

2

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

3

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

4

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

5

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

6

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

7

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

8

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

9

The circumstances leading up to self-injury: Interpersonal factors

Being bullied

Physically

Picked on

Name calling

Making fun of person

Being laughed at

10

The circumstances leading up to self-injury: Interpersonal factors

Arguments

Arguing with someone else

Overhearing other arguments

11

The circumstances leading up to self-injury: Internal factors

Physical health issues

Physical illness

Mobility impairment

Tiredness, exhaustion

12

The circumstances leading up to self-injury: Internal factors

Memories of difficult experiences in the past

Abuse

Bereavement

13

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

14


People with ld Family carers


Lack of control (can’t do what wants to do)



Interpersonal issues Uncertainty/ change


15


People with ld Family carers ProfessionalsDisempowering circumstances


Uncertainty/ change




Interpersonal issues

Uncertainty/ change

No particular reason - biological basis


16

The feelings a person has before they self-injure

People with ld

Angry

Frustrated

Sad, depressed, low

Upset

17


People with ld Family carers

Angry Frustrated

Frustrated Agitated

Sad, depressed, low

Angry

Upset Anxious

18


People with ld Family carers Professionals

Angry Frustrated Frustrated

Frustrated Agitated Anxious

Sad, depressed, low

Angry Upset

Upset Anxious Sad, depressed low

19

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

20


People with ld Family carersExpression of emotional pain



Attention-seeking / to get a reaction


A response to change

Control The need to communicate something


21


People with ld Family carers ProfessionalsExpression of emotional pain





The need to communicate something


A response to change

Self-stimulation / habit

Control The need to communicate something



Some changing views

22

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’

23

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

24

For further information…

Fiona Macaulay

Bristol Crisis Service for Women

PO Box 654

Bristol BS99 1XH

[email protected]

Pauline Heslop

Norah Fry Research Centre

University of Bristol

3 Priory Road

Bristol BS8 1TX

[email protected]

Hidden Pain? People with learning disabilities who self-injure Pauline Heslop Norah Fry Research Centre, University of Bristol Fiona Macaulay Bristol Crisis.

Documents

self injury

selfinjury people

views selfinjury

selfinjury external

exhaustion slide

medication slide

nonlinked slide

learning disabilities