Self-injury and people with learning disabilities

1. Self-injury and people with learning disabilities Bristol Crisis Service for Women and Norah Fry Research Centre, University of Bristol 2006 – 2009 Funded by The Big Lottery Fund

2. 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.

3. How we are doing the research • Recruitment of people with learning disabilities who self-injure • Creative approach to ‘interviews’ • Up to four ‘interview’ visits • Interviews with family members and/or professionals, with consent • Grounded theory analysis using MaxQDA

4. Why people with learning disabilities say they self-injure 1. As a way of coping with difficult feelings or particularly strong feelings 2. Being in circumstances that might make a person want to self-injure 3. Wanting to achieve something as a result of the self-injury 4. The lasting impact of past experiences 5. As a way of communicating

5. 1. As a way of coping with difficult feelings or particularly strong feelings Feelings most frequently mentioned: angry frustrated sad stressed/wound up confused distressed depressed fed up worried / anxious

6. 2. Being in circumstances that might make the person want to self-injure Being bored Too much going on Being over-excited Being bullied Being involved in, or witnessing arguments People talking down to the person with ld Not being able to do what the person wants to Being in a situation where the person feels they are not coping When someone has hurt their feelings When bad things happen to someone else Not liking what was happening at the time

7. 3. Wanting to achieve something as a result of the self-injury A release To show how feeling underneath To calm down To blank everything out To control others Wanting someone to care for them/be nice to them To avoid doing something Wanting to sleep Wanting to be noticed Feeling at the time they wanted to kill themselves To show someone else how much they’d hurt and upset them

8. 4. The lasting impact of past experiences • Childhood issues: abuse neglect • Past issues regarding uncertainty: moving house, change of school, moving into new family parent dying • Major changes occurring in the present that bring back memories of difficult past experiences

9. 5. As a way of communicating • When others don’t seem to be listening • When the person with learning disabilities has difficulty in communicating

10. Final comments • We need to view self-injury as a complex and variable form of expression, and to understand its function and meaning from the point of view of the person concerned • People with learning disabilities are able to give insightful comments about their self-injury • The principles of choice, self-determination and ‘voice’ are vital

11. Contact Details • Pauline Heslop, Senior Research Fellow Norah Fry Research Centre, 3 Priory Road, Bristol, BS8 1TX pauline.heslop@bristol.ac.uk Tel: +44 (0) 117 33 10980 • Lorna Henry, Research Associate Bristol Crisis Service for Women PO Box 654, Bristol, BS99 1XHl.henry@bristol.ac.uk Tel: +44 (0) 0117 33 10986 • Sandra Dowling, Research Associate Norah Fry Research Centre, 3 Priory Road, Bristol, BS8 1TX Sandra.Dowling@kcl.ac.uk