Providing end‐of‐life care in disability community living services: An organizational capacity‐building model using a public health approach

Grindrod, Andrea; Rumbold, Bruce

doi:10.1111/jar.12372

Cited by 26 publications

(39 citation statements)

References 40 publications

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“…46,60,61 This is also important for advance care planning, with several papers placing emphasis on the need to discuss, document and respect preferred place of care and death, which tended to be home. 1,43,46,62,63…”

Section: Needsmentioning

confidence: 99%

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

et al. 2020

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Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

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Section: Needsmentioning

confidence: 99%

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

et al. 2020

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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%

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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“…The issue features a number of studies using various qualitative methodologies to understand the experience of people with intellectual disability and their supporters, as might be expected in a developing field of research. There are also several mixed methods studies (Forrester-Jones et al, 2017;Grindrod & Rumbold, 2017;McGinley et al, 2017;Tuffrey-Wijne et al, 2017) and one quantitative paper (Stancliffe et al, 2017).…”

Section: Research Methodologiesmentioning

confidence: 99%

“…Grindrod and Rumbold () examined the challenges of delivering high‐quality palliative care to people with intellectual disability residing in disability community living services and described a model they developed of collaboration between disability and palliative care services. The papers by Forrester‐Jones et al.…”

Section: Policy Issuesmentioning

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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Providing end‐of‐life care in disability community living services: An organizational capacity‐building model using a public health approach

Cited by 26 publications

References 40 publications

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

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

End of life and people with intellectual disability

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