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Journal article

Research unpacked: damage limitation

Authors:
HESLOP Pauline, MACAULAY Fiona
Journal article citation:
Learning Disability Today, 10(1), January 2010, pp.16-18.
Publisher:
Pavilion
Place of publication:
Hove

This article describes a study which looked at how people with learning disabilities who self-injure make sense of their self-injury and what they say would help most. Twenty-five people with learning disabilities and personal experience of self-injury took part in 1 to 4 research interviews between 2006 and 2008. All the participants were able to describe examples of circumstances leading up to their self-injury. These included external factors over which the participant had little control such as not being listened to, interpersonal factors such as being bullied, and internal factors caused for example by particular thoughts or memories. The participants identified the feelings they experienced before self-injuring, the most common being angry, sad, depressed, low, frustrated, or wound up. Over three-quarters of the participants considered that having someone to talk to who would listen to them would help, and also wanted someone to help look after their injuries. Being encouraged not to self-injure was considered helpful by some and unhelpful by others. The article concludes that the results challenge existing practice which considers that nothing can be done, and indicate the need to work with each person individually to help them use coping strategies. Creating conditions where people with learning disabilities have choice and control over their lives is also important.

Book

All change: transition into adult life: a resource for young people with learning difficulties, family carers and professionals

Authors:
MALLETT Robina, POWER Margaret, HESLOP Pauline
Publisher:
Pavilion
Publication year:
2003
Pagination:
246p.
Place of publication:
Brighton

Transition can be a particularly complicated and stressful experience for a young person with disabilities and his or her family. All change looks at the process of transition in England and the main issues and choices that may arise, both in the lives of young people with learning difficulties and for their families. This resource is aimed at young people with learning difficulties as they pass through transition into adult life, as well as their family carers and professionals. It covers what happens when the young person leaves school, the choices they might need to make about further education, work, housing and leisure, the transition to adult services and the different options and types of support that are available

Journal article

Mortality in people with intellectual disabilities

Authors:
HESLOP Pauline, LAUER Emily, HOGHTON Matt
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.367-372.
Publisher:
Wiley-Blackwell

This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is important. It explains how an understanding of mortality can help understand how healthy people are and also help determine whether a person has died too soon. The paper also introduces the papers in this special edition of the Journal of Applied Research in Intellectual Disabilities. (Edited publisher abstract)

Journal article

Mortality of people with intellectual disabilities in England: a comparison of data from existing sources

Authors:
HESLOP Pauline, GLOVER Gyles
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.414-422.
Publisher:
Wiley-Blackwell

Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential Inquiry into Premature Deaths of People with intellectual disabilities (CIPOLD); the 2013 Joint Health and Social Care Intellectual Disability Self-assessment Exercise; local registers of people with intellectual disability; and analysis of Cause of Death certificates. Results: Available data confirm that people with intellectual disability have a shorter lifespan and increased risk of early death when compared with the general population. The standardised mortality rate for people with intellectual disabilities is approximately twice that of the general population in England, with little indication of any reduction in this over time. Conclusions: Comprehensive data about mortality of people with intellectual disabilities that take account of the age and sex distribution of the population are currently lacking in England. Existing data suggest persistent inequalities between people with intellectual disabilities and the general population. There is an urgent need for better monitoring mechanisms and actions to address these. (Publisher abstract)

Journal article

Premature deaths - how many could be avoided?

Authors:
MARRIOTT Anna, HESLOP Pauline
Journal article citation:
Community Living, 27(1), 2013, pp.26-27.
Publisher:
Hexagon Publishing

An inquiry into premature deaths among people with learning disabilities revealed that over a third could have been avoided through good quality health care. The authors, who were part of the research team, report on their findings. (Publisher abstract)

Journal article

The Confidential Inquiry into the deaths of people with learning disabilities - the story so far

Authors:
HESLOP Pauline, MARRIOTT Anna
Journal article citation:
Tizard Learning Disability Review, 16(5), 2011, pp.18-25.
Publisher:
Emerald

A Confidential Inquiry to review the deaths of all people with learning disabilities from the age of 4 onwards in Gloucestershire and the Avon area, and to determine whether the deaths of people with learning disabilities are premature or not, was commissioned by the Department of Health in 2010. Its main aim is to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes. It has been commissioned to run until March 2013. This paper by 2 participants in the work of the Confidential Inquiry outlines the process, covering the background, the team, and the inquiry aims, scope and methodology. It also discusses issues faced in conducting the Confidential Inquiry, including engaging with and involving professionals, maintaining confidentiality, and the tension between wanting to base the findings on a sufficiently large number of cases so that the findings are robust and reliable but also wanting to make immediate changes to any potentially modifiable factors found to contribute to the deaths of people with learning disabilities. The step-by-step process adopted in the inquiry is illustrated in an appendix.

Book Full text available online for free

Hidden pain?: self-injury and people with learning disabilities: summary of findings

Authors:
HESLOP Pauline, MACAULEY Fiona
Publisher:
Bristol Crisis Service for Women
Publication year:
2009
Pagination:
4p.
Place of publication:
Bristol

This summary reports the key findings from a 3-year research project which aimed to obtain the views of people with learning disabilities about their self-injury. It is based on the views of 25 people with learning disabilities and personal experience of self-injury who took part in up to 4 research interviews each. The people with learning disabilities were aged between 14 and 65 and lived in the United Kingdom in a variety of different living arrangements. In addition, interviews were also conducted with 15 family members and 33 professionals. The most common types of self-injury were found to be scratching, cutting their skin and hitting themselves. Half of the participants reported engaging in these behaviours. The next most frequently reported types of self-injury were self-biting, taking an overdose and hitting out at something else such as a wall or hard object. All but 5 of the participants engaged in more than one type of self-injury. This summary provides an overview of the key findings of the project, including the circumstances and feelings leading up to self-injury and what are considered to be helpful forms of support. Recommendations for the care of people with learning disabilities to address their self-injury are provided.

Book Full text available online for free

Hidden pain?: self-injury and people with learning disabilities

Authors:
HESLOP Pauline, MACAULAY Fiona
Publisher:
Bristol Crisis Service for Women
Publication year:
2009
Pagination:
116p., bibliog.
Place of publication:
Bristol

This report presents the findings from a 3-year research project which aimed to obtain the views of people with learning disabilities about their self-injury. It is based on the views of 25 people with learning disabilities and personal experience of self-injury who took part in up to 4 research interviews each. The people with learning disabilities were aged between 14 and 65 and lived in the United Kingdom in a variety of different living arrangements. In addition, interviews were also conducted with 15 family members and 33 professionals. The most common types of self-injury were found to be scratching, cutting their skin and hitting themselves. Half of the participants reported engaging in these behaviours. The next most frequently reported types of self-injury were self-biting, taking an overdose and hitting out at something else such as a wall or hard object. All but 5 of the participants engaged in more than one type of self-injury. This report covers: people with learning disabilities’ experiences of self-injury; circumstances leading up to their self-injury; their feelings before self-injuring; how they try to stop themselves self-injuring; the circumstances for people with learning disabilities after self-injuring; what they consider to be helpful and less helpful forms of support; family members and professionals’ views about self-injury; and the impact on family members and professionals of supporting a person with learning disabilities who self-injures.

Book Full text available online for free

Hidden pain?: people with learning disabilities who hurt themselves

Authors:
HESLOP Pauline, MACAULAY Fiona
Publisher:
Bristol Crisis Service for Women
Publication year:
2009
Pagination:
4p.
Place of publication:
Bristol

This document is an easy read summary which provides the key findings from a research project which aimed to obtain the views of people with learning disabilities about their self-injury. It is based on interviews of 25 people with learning disabilities and personal experience of self-injury. The key findings of the project are described, including why people hurt themselves and the circumstances leading up to their self-injury, and how people try to stop hurting themselves and the support they need to do this. Other resources for people with learning disabilities who hurt themselves are listed.

Journal article

Supporting people with learning disabilities who self-injure

Author:
HESLOP Pauline
Journal article citation:
Tizard Learning Disability Review, 16(1), January 2011, pp.5-15.
Publisher:
Emerald

Despite large amounts of research conducted on self-injury in people with learning disabilities, little has addressed the perspectives of those with disabilities, and what they view as most helpful. This article, citing results from the Hidden Pain project which examined the views of those with learning disabilities on their self-injury, reports on the support that people with learning disabilities who self-injure say they have found, or would find, helpful in relation to their self-injury. Themes that emerged from people with learning disabilities, including those who use little or no verbal communication, is that they want opportunities to communicate their feelings and to be listened to. The paper concluded that being open to listening and developing one's own communication skills was essential for supporters of people with learning disabilities who self-injure to help this group.

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