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.
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.
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
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
Extended abstract:
Author:MALLETT Robina; POWER Margaret; HESLOP Pauline Title: All change: transition into adult life: a resource for young people with learning difficulties, family carers and professionals Publisher: Pavilion, 2003
Summary
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.
Context
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.
Contents
An introduction describes new Government initiatives (Valuing people, The SEN Code of Practice, and the new Connexions service), explains how to use the guide, and lists useful resources. Part 1 consists of information for adults who are supporting a young person with learning difficulties during transition and has chapters on planning for transition, changing roles (from parent to carer, and being a young adult with learning difficulties); choices for the future (about further education, work, daytime activity and where to live); using adult services (social services; health services; technology, aids and equipment; getting around; and knowing where you stand: rights and entitlements); and living life to the full (making friends, sex matters: developing personal and intimate relationships, and having fun: leisure, sport and holidays). Useful resources are listed throughout. This part ends with a glossary and its own index. Part 2 is the young people's pages and is written in accessible language. It begins with notes on how to use the part and an introduction, and has chapters on transition, planning for the future, new choices to think about, and becoming an adult – what changes?
Subject terms:
learning disabilities, service transitions, young people, families;
Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1630-1640.
Publisher:
Wiley
Background: People with intellectual disabilities experience significant health inequities. The aim of this report is to understand the circumstances leading to death from COVID-19 in people with intellectual disabilities. Method: Local areas in England prioritised reviewing 200 deaths of adults with intellectual disabilities. Of these, approximately 80% were required to be deaths from suspected or confirmed COVID-19 as this was the focus of the study; the remainder from other causes. All deaths occurred between 2 March2020 and 9 June 2020. Results: People with intellectual disabilities differed from the general population in their symptoms of COVID-19 and age at death. The overall quality of care was rated similar to other deaths of people with intellectual disabilities. Concerns were raised relating to recognising acute deterioration and do not attempt cardio-pulmonary resuscitation decisions. Conclusions: Service improvements are indicated in the ways in which people with intellectual disabilities encounter COVID-19 and experience the disease.
(Edited publisher abstract)
Background: People with intellectual disabilities experience significant health inequities. The aim of this report is to understand the circumstances leading to death from COVID-19 in people with intellectual disabilities. Method: Local areas in England prioritised reviewing 200 deaths of adults with intellectual disabilities. Of these, approximately 80% were required to be deaths from suspected or confirmed COVID-19 as this was the focus of the study; the remainder from other causes. All deaths occurred between 2 March2020 and 9 June 2020. Results: People with intellectual disabilities differed from the general population in their symptoms of COVID-19 and age at death. The overall quality of care was rated similar to other deaths of people with intellectual disabilities. Concerns were raised relating to recognising acute deterioration and do not attempt cardio-pulmonary resuscitation decisions. Conclusions: Service improvements are indicated in the ways in which people with intellectual disabilities encounter COVID-19 and experience the disease.
(Edited publisher abstract)
Subject terms:
learning disabilities, Covid-19, death, health inequalities;
This report focuses on findings from completed reviews of the deaths of people with learning disabilities that occurred in the calendar years 2018, 2019 and 2020, identifying any trends that have occurred over time, and considering implications for service improvement. The analysis covers: deaths occurring in 2018, 2019 and 2020 16; demographic information about people who died 2018-2020; age at death and its potential influences; cause of death; circumstances of deaths; indicators of the quality of care provided; deaths of people from minority ethnic groups; deaths from COVID-19 in 2020. A total of 9,110 deaths of people with learning disabilities (622 deaths of children; 8,488 deaths of adults) occurring between 1st Jan 2018 and 31st December 2020 were notified to the LeDeR programme. In 2018 and 2019, for both males and females, the leading condition-specific underlying causes of death were very different for people with learning disabilities compared to the general population. Cerebral palsy, epilepsy and bacterial pneumonia were the condition-specific leading causes of death in people with learning disabilities age ages 5- 49 years. By contrast, in the general population, the condition-specific leading causes of deaths at these ages were related to suicide and injury or poisoning of undetermined intent; for females aged 35-49 it was malignant neoplasm of the breast. In 2020, the condition-specific leading cause of death in people with learning disabilities from age 35 and over for males, and age 20 and over in females was COVID-19.
(Edited publisher abstract)
This report focuses on findings from completed reviews of the deaths of people with learning disabilities that occurred in the calendar years 2018, 2019 and 2020, identifying any trends that have occurred over time, and considering implications for service improvement. The analysis covers: deaths occurring in 2018, 2019 and 2020 16; demographic information about people who died 2018-2020; age at death and its potential influences; cause of death; circumstances of deaths; indicators of the quality of care provided; deaths of people from minority ethnic groups; deaths from COVID-19 in 2020. A total of 9,110 deaths of people with learning disabilities (622 deaths of children; 8,488 deaths of adults) occurring between 1st Jan 2018 and 31st December 2020 were notified to the LeDeR programme. In 2018 and 2019, for both males and females, the leading condition-specific underlying causes of death were very different for people with learning disabilities compared to the general population. Cerebral palsy, epilepsy and bacterial pneumonia were the condition-specific leading causes of death in people with learning disabilities age ages 5- 49 years. By contrast, in the general population, the condition-specific leading causes of deaths at these ages were related to suicide and injury or poisoning of undetermined intent; for females aged 35-49 it was malignant neoplasm of the breast. In 2020, the condition-specific leading cause of death in people with learning disabilities from age 35 and over for males, and age 20 and over in females was COVID-19.
(Edited publisher abstract)
Subject terms:
learning disabilities, mortality, health inequalities, Covid-19;
Journal of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.367-372.
Publisher:
Wiley
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)
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 of Applied Research in Intellectual Disabilities, 28(5), 2015, pp.414-422.
Publisher:
Wiley
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)
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)
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)
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)
Subject terms:
learning disabilities, death, health care, prevention;
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.
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.
Subject terms:
learning disabilities, investigations, death, health care;
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.
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.
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.
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.