Last months of life of people with intellectual disabilities: A UK population‐based study of death and dying in intellectual disability community services

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

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Oxford Handbook of Learning and Intellectual Disability Nursing

10.1093/med/9780198782872.001.0001 ◽

2018 ◽

Keyword(s):

Intellectual Disability ◽

Intellectual Disabilities ◽

Community Services ◽

Physical And Mental Health ◽

Republic Of Ireland ◽

Active Involvement ◽

Authoritative Text ◽

People With Intellectual Disabilities ◽

The Republic ◽

The Uk

The Oxford Handbook of Learning and Intellectual Disability Nursing, 2nd edition, has been comprehensively updated throughout and brings together the contributions of leading practitioners and academics from the UK, the Republic of Ireland, and further beyond, in an authoritative text that provides essential facts and information on nurses working with people with intellectual disabilities. A unique aspect to this Oxford Handbook is the continuing attention given to differences in legislation and social policy across the jurisdiction of the constituent countries of the UK, as well as the Republic of Ireland. The landscape for the practice of nursing has never been so complex, and given this complexity of context and practice, the Oxford Handbook of Learning and Intellectual Disability Nursing continues to offer students and newly qualified practitioners alike up-to-date and concise, practical applied knowledge, as well as theoretical information, about working in a person-centred way with people with intellectual disabilities and their families/carers in order to promote their physical and mental health, improve their quality of life and their active involvement in decisions about their care, and support their access to general healthcare and community services. This handbook will be of use in the very many areas where nurses for people with learning/intellectual disabilities are located. It will also be of use to a wider range of other health and/or social care professionals, who often seek an authoritative text that provides essential facts and information on working with people with intellectual disabilities.

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The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study

The Lancet ◽

10.1016/s0140-6736(13)62026-7 ◽

2014 ◽

Vol 383 (9920) ◽

pp. 889-895 ◽

Cited By ~ 218

Author(s):

Pauline Heslop ◽

Peter S Blair ◽

Peter Fleming ◽

Matthew Hoghton ◽

Anna Marriott ◽

...

Keyword(s):

Intellectual Disabilities ◽

Population Based ◽

Population Based Study ◽

Premature Deaths ◽

People With Intellectual Disabilities ◽

The Uk

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Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study

Public Health ◽

10.1016/j.puhe.2021.04.002 ◽

2021 ◽

Vol 195 ◽

pp. 83-88

Author(s):

Maarten Cuypers ◽

Hilde Tobi ◽

Jenneken Naaldenberg ◽

Geraline L. Leusink

Keyword(s):

The Netherlands ◽

Intellectual Disabilities ◽

Public Services ◽

Population Based ◽

Population Based Study

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Coping With Criticism and Praise

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-120.3.258 ◽

2015 ◽

Vol 120 (3) ◽

pp. 258-268 ◽

Cited By ~ 6

Author(s):

Lynn Esdale ◽

Andrew Jahoda ◽

Carol Pert

Keyword(s):

Intellectual Disability ◽

Positive Affect ◽

Intellectual Disabilities ◽

The Self ◽

Self Perceptions ◽

Stigma And Discrimination ◽

People With Intellectual Disabilities ◽

Study Participants

AbstractThrough experiencing stigma and discrimination, people with intellectual disability may become more sensitive to criticism from others and be less likely to believe praise. This study compared how people with and without intellectual disability viewed praise and criticism, using a vignette task developed for the study. Participants were asked to imagine someone saying something praiseworthy or critical and were then asked about their emotions, beliefs, and thoughts. People with intellectual disability were more likely to believe and be distressed by criticism. Contrary to predictions, this group were also more likely to believe praise and experience positive affect. The results suggest that the self-perceptions of people with intellectual disabilities is more dynamic and reliant on the views of others.

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Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness

Palliative & Supportive Care ◽

10.1017/s1478951511000137 ◽

2011 ◽

Vol 9 (2) ◽

pp. 201-208 ◽

Cited By ~ 22

Author(s):

Karen Ryan ◽

Suzanne Guerin ◽

Philip Dodd ◽

John McEvoy

Keyword(s):

Intellectual Disabilities ◽

Quality Care ◽

Death And Dying ◽

Western Society ◽

Framework Analysis ◽

Health Service Executive ◽

Provide Quality Care ◽

Open Discussion ◽

Alternative Approaches ◽

People With Intellectual Disabilities

AbstractObjective:The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.Method:Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.Results:Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was “wrong.” Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.Significance of results:Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.

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Intellectual Disability, Identity, and the Internet

Assistive Technologies ◽

10.4018/978-1-4666-4422-9.ch011 ◽

2013 ◽

pp. 198-223

Author(s):

Darren D. Chadwick ◽

Chris Fullwood ◽

Caroline J. Wesson

Keyword(s):

Intellectual Disability ◽

Intellectual Disabilities ◽

Internet Use ◽

Computer Mediated Communication ◽

The Internet ◽

Mediated Communication ◽

Disability Identity ◽

Computer Mediated ◽

Online Behaviour ◽

People With Intellectual Disabilities

This chapter provides insight into the nature of online engagement by people with intellectual disabilities, the extent and quality of this engagement in terms of the access that people have, and how people with intellectual disabilities present themselves in the online world. The authors of this chapter provide an overview of the extant literature on intellectual disability, identity, and the Internet. The chapter begins by outlining issues around Internet use and access by people with intellectual disabilities, including potential barriers. It then moves on to address online behaviour and the potential benefits of Internet use for people with intellectual disabilities. The chief focus of the chapter follows, describing the manner in which computer mediated communication affects how people with intellectual disabilities present themselves in the online world as well as considering the role that family members and supporters play in the development and management of people’s online identities. Finally, the chapter introduces future directions for research into intellectual disability, identity, and the Internet.

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Intellectual Disability, Identity, and the Internet

Handbook of Research on Technoself ◽

10.4018/978-1-4666-2211-1.ch013 ◽

2013 ◽

pp. 229-254 ◽

Cited By ~ 6

Author(s):

Darren D. Chadwick ◽

Chris Fullwood ◽

Caroline J. Wesson

Keyword(s):

Intellectual Disability ◽

Intellectual Disabilities ◽

Internet Use ◽

Computer Mediated Communication ◽

The Internet ◽

Mediated Communication ◽

Disability Identity ◽

Computer Mediated ◽

Online Behaviour ◽

People With Intellectual Disabilities

This chapter provides insight into the nature of online engagement by people with intellectual disabilities, the extent and quality of this engagement in terms of the access that people have, and how people with intellectual disabilities present themselves in the online world. The authors of this chapter provide an overview of the extant literature on intellectual disability, identity, and the Internet. The chapter begins by outlining issues around Internet use and access by people with intellectual disabilities, including potential barriers. It then moves on to address online behaviour and the potential benefits of Internet use for people with intellectual disabilities. The chief focus of the chapter follows, describing the manner in which computer mediated communication affects how people with intellectual disabilities present themselves in the online world as well as considering the role that family members and supporters play in the development and management of people’s online identities. Finally, the chapter introduces future directions for research into intellectual disability, identity, and the Internet.

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Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability

Qualitative Health Research ◽

10.1177/1049732319901127 ◽

2020 ◽

Vol 30 (7) ◽

pp. 1019-1032 ◽

Cited By ~ 2

Author(s):

Karen Watchman ◽

Kate Mattheys ◽

Andrew Doyle ◽

Louise Boustead ◽

Orlando Rincones

Keyword(s):

Social Change ◽

Intellectual Disability ◽

Intellectual Disabilities ◽

Research Team ◽

Critical Dialogue ◽

Marginalized Groups ◽

Improved Outcomes ◽

People With Intellectual Disabilities ◽

Photovoice Methodology ◽

Global Evidence

There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire’s empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers “disappearing” and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire’s original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.

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Are we training psychiatrists to develop skills in intellectual disability psychiatry? Current European context and future directions

European Psychiatry ◽

10.1192/j.eurpsy.2020.102 ◽

2020 ◽

Vol 63 (1) ◽

Author(s):

Marisa Casanova Dias ◽

Bhathika Perera ◽

Florian Riese ◽

Livia De Picker ◽

Mariana Pinto da Costa ◽

...

Keyword(s):

Mental Health ◽

Intellectual Disability ◽

Mental Health Services ◽

Health Services ◽

Intellectual Disabilities ◽

Psychiatric Disorders ◽

Psychiatric Training ◽

Future Directions ◽

Education And Health ◽

People With Intellectual Disabilities

Abstract The majority of people with intellectual disabilities (ID) and psychiatric disorders access mainstream mental health services across Europe. However, only 56% of countries provide postgraduate psychiatric training in ID according to a survey across 42 European countries. We explore the challenges of ID training and make recommendations for education and health policymakers.

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