scholarly journals Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

2020 ◽  
Author(s):  
Roger J. Stancliffe ◽  
Michele Y. Wiese ◽  
Sue Read ◽  
Gail Jeltes ◽  
Rebecca Barton ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Psychological Harm

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

End of life and people with intellectual disability

2017 ◽  
Vol 30 (6) ◽  
pp. 977-981 ◽  
Author(s):  
Roger J Stancliffe ◽  
Michele Y Wiese ◽  
Sue Read
Keyword(s):  
Intellectual Disability ◽  
End Of Life

Palliative and end-of-life care for people with learning disabilities

2019 ◽  
pp. 777-784
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Learning Disability ◽  
End Of Life ◽  
Early Onset ◽  
End Of Life Care ◽  
Life Care ◽  
The World ◽  
The Uk

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

scholarly journals End-of-Life Decision-Making for People With Intellectual Disability From the Perspective of Nurses

2015 ◽  
Vol 12 (4) ◽  
pp. 294-302 ◽  
Author(s):  
A. M. A. Wagemans ◽  
H. M. J. van Schrojenstein Lantman-de Valk ◽  
I. M. Proot ◽  
J. Metsemakers ◽  
I. Tuffrey-Wijne ◽  
...  
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
End Of Life ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals End of Life Care for People with an Intellectual Disability a Qualitative Exploration of Staff Carers’ Experiences

2021 ◽  
Author(s):  
Mary McCarron ◽  
Philip McCallion ◽  
Eilish Burke ◽  
Fiona Timmins
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
End Of Life ◽  
End Of Life Care ◽  
Limited Attention ◽  
Rapid Decline ◽  
Major Theme ◽  
Life Care ◽  
Care Services ◽  
Co Morbidity

Abstract Background: Although people with intellectual disability are increasingly living longer and experiencing high levels of multiple co-morbidity, palliative care has received limited attention among this population. There is some evidence that their needs are unattended and that more could be done to improve care services.Methods: 28 carers who cared for older people with intellectual disability at end of life were interviewed. Data were analysed using thematic analysis. Results: One major theme emerged relating to the practical management s of end of life care in formal institutionalised settings. Seven subthemes also emerged: pain, learned acceptance, transitions, decisions, conversations about dying, GP care, rapid decline and challenges with interventions.Conclusion: Gaps emerged in the care of the person with intellectual disability. Pain assessment and pain management are particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations are needed. More needs to be done in terms of education for carers, health care workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort.

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