Hidden Pain?

Press release issued 16 November 2009

The research study, Hidden Pain? Self-injury and people with learning disabilities was carried out by Bristol University's Norah Fry Research Centre and the Bristol Crisis Service for Women.  It was funded by a Big Lottery Fund research award.

This is the first time a study has actually asked people with learning disabilities throughout the UK about their own understandings of their self-injury and what would help them.  Twenty-five people with learning disabilities and personal experience of self-injury took part in up to four research interviews each.  In addition, 15 family members and 33 professionals were interviewed for the research study.  Most were 'linked' to the people with learning disabilities taking part in the study.

The study found the most frequently reported types of self-injury were scratching, cutting their skin, hitting themselves, self-biting, taking an overdose and hitting out at something else such as a hard wall or hard object.  All but five of the participants engaged in more than one type of self-injury.

Dr Pauline Heslop, lead researcher for the project and Senior Research Fellow at the Norah Fry Research Centre, said: "This study has provided considerable insights into the circumstances, thoughts and feelings of 25 people.  In many ways it challenges existing practice in the learning disability field.   We suggest self-injury is something that can be understood, and that for these people its roots lie in their past or current circumstances and experiences, rather than their biological make-up.

"We hope that when the recommendations are implemented, we can start to address self-injury in people with learning disabilities with the care and concern that they deserve and not 'sweep it under the carpet' as if there were nothing that we can do about it."

The study proposes a number of recommendations based on its research findings:

• Acknowledge self-injury as an issue in its own right and take it seriously.
• Address self-injury in people with learning disabilities as it is addressed in anyone else.
• Acknowledge the importance of choice and control in people's lives, and strive to create conditions in which people can be in control as much as possible.
• Work with people with learning disabilities to help them understand, clarify and manage their emotions.
• Start with strategies that people are already using to manage their self-injury and build on these.
• Work individually and creatively with individuals in a person-centred way.
• Consistency is key.
• Put systems in place to help people with learning disabilities explore past experiences.
• Consider support groups for people with learning disabilities who self-injure.
• Practice listening skills and be mindful of always being non-judgemental, accepting and respectful.

Hilary Lindsay, Director of Bristol Crisis Service for Women, said: "We hope the report's recommendations will enable people with learning disabilities who self-injure to get the support that they need.  We have also been able to produce a range of resources about self-injury in people with learning disabilities for family members, professionals and people with learning disabilities themselves."

The Norah Fry Research Centre and Bristol Crisis Service for Women will present their research study findings on Wednesday 25 November at Explore, At-Bristol, Anchor Road, Bristol.  To download a booking form, go to http://www.bristol.ac.uk/norahfry/news/2009/launchflyer.pdf

The conference will be of interest to people with learning disabilities, and all those supporting them in the statutory, independent and voluntary sectors.

Please contact Joanne Fryer for further information.