Agency, social and healthcare supports for adults with intellectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review

Moro, Teresa; Savage, Teresa A.; Gehlert, Sarah

doi:10.1111/jar.12374

Cited by 18 publications

(25 citation statements)

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“…A notable gap in the current issue is analysis of population-based data to identify, in a population context, the extent of end-of-life issues that affect people with intellectual disability. As noted by Moro, Savage, and Gehlert (2017)…”

Section: Research Methodologiesmentioning

confidence: 75%

“…A notable gap in the current issue is analysis of population‐based data to identify, in a population context, the extent of end‐of‐life issues that affect people with intellectual disability. As noted by Moro, Savage, and Gehlert (), creating or adding an intellectual disability identifier to population data on death, administrative data on palliative care, coronial records and so on would open rich possibilities for important research. These opportunities include comparisons with the general community and evaluation over time of the applied impact of end‐of‐life policy and practice changes.…”

Section: Research Methodologiesmentioning

confidence: 99%

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End of life and people with intellectual disability

Stancliffe

Wiese

Read

2017

Research Intellect Disabil

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Section: Research Methodologiesmentioning

confidence: 75%

Section: Research Methodologiesmentioning

confidence: 99%

End of life and people with intellectual disability

Stancliffe

Wiese

Read

2017

Research Intellect Disabil

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“…The need for collaboration between services has been one of the most consistent findings in the literature on end-of-life and palliative care for people with ID (e.g. Dunkley and Sales, 2014;Friedman et al, 2012;Grindrod and Rumbold, 2017;Moro et al, 2017;Tuffrey-Wijne et al, 2007).…”

Section: Working Together In Collaborationmentioning

confidence: 90%

“…There is limited research internationally on where people with ID are cared for at the very end of life or where they die; a literature review found no large-scale studies with regards to this (Moro et al, 2017). A UK mortality review found that 64% of people with ID died in hospital, compared with 47% of hospital deaths in the general population (Norah Fry Centre for Disability Studies, 2017).…”

Section: End-of-life Care Provision For People With Id In the Ukmentioning

confidence: 99%

“…about the barriers people with ID face at the end of life. They include the following: difficulties with communication which affect all aspects of palliative care provision, including pain and symptom assessment; difficulties with patient insight into the condition, its treatment and possible outcomes; lack of involvement in end-of-life decision-making; multi-morbidity and polypharmacy; complex social circumstances that may involve families as well as care staff complex social circumstances; lack of reasonable adjustments to care; transitions in care settings; lack of experience among healthcare staff of people with ID; and lack of experience among ID staff of illness, death and dying, leading to fear and avoidance (Cross et al, 2012;Dunkley and Sales, 2014;Friedman et al, 2012;Moro et al, 2017;Read, 2013;Sterling Welch and Moreno-Leguizamon, 2016;.…”

Section: Introductionmentioning

confidence: 99%

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Excellence in palliative and end-of-life care provision for people with intellectual disability

Tuffrey‐Wijne

Davidson

2018

Int J Palliat Nurs

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BACKGROUND: People with ID experience significant inequalities in end-of-life and palliative care provision. AIMS:To identify the key characteristics of practice initiatives and case reports that have won a UK award for outstanding provision of end-of-life care for people with ID (2008ID ( -2018. METHODS:Thematic content analysis of the written nominations for award winners and those highly commended (n=25). FINDINGS:Four themes were identified: (1) Good practice was dependent on 'champions' with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools. CONCLUSION:The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.Intellectual disabilities; Palliative care; End of life; Healthcare quality, access and evaluation; Delivery of healthcare This paper provides an overview and analysis of practice initiatives that have won a UK award for excellence in palliative and end-of-life care provision for people with ID, given annually by the Palliative Care for People with Learning Disabilities (PCPLD) Network. The PCPLD Network is a UK charity aiming to raise awareness of the palliative care needs of people with ID, to share and promote best practice, and to enhance collaboration (PCPLD Network, 2018). The Linda McEnhill Award is given to individuals, teams, organisations or collaborations that have initiated a new development, project or innovation, or provided outstanding end-of-life care to one person with ID (see box 1). Intellectual disability (ID): definition and prevalenceAccording to the World Health Organisation (2018), ID means "a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development." ID affects around 2% of the population; this is approximately one million people in England (Learning Disabilities Observatory, 2016). In the UK, the term "learning disability" is often used, rather than ID. Health inequalitiesA large population-based study in Finland found that whilst people with ID had a lower life expectancy, those whose ID was mild had a similar life expectancy to the general population (Patja et al, 2000). More recent UK research has found, however, that life expectancy for all people with ID remains significantly below that of the general population (Emerson, Glover, & Wolstenholme, 2014). The UK Learning Disability Mortality Review Programme found that in 2017, the median age at death was 47 for people with severe a...

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Social Work Practice and Disability Issues

Moro¹,

Brashler²

2019

Handbook of Health Social Work

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Agency, social and healthcare supports for adults with intellectual disability at the end of life in out‐of‐home, non‐institutional community residences in Western nations: A literature review

Cited by 18 publications

References 92 publications

End of life and people with intellectual disability

End of life and people with intellectual disability

Excellence in palliative and end-of-life care provision for people with intellectual disability

Social Work Practice and Disability Issues

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