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

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.

Palliative care, health services accessibility, health services needs and demand, intellectual disability
0269-2163
1006-1018
Adam, Emily
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Sleeman, Katherine E
381a7fb7-0ae8-4645-a6e0-088220c3178b
Brearley, Sarah
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Hunt, Katherine
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Tuffrey-Wijne, Irene
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Adam, Emily
bd55e1d7-9a99-4096-b9e3-2c53af9721b1
Sleeman, Katherine E
381a7fb7-0ae8-4645-a6e0-088220c3178b
Brearley, Sarah
3b8f7cf1-77d4-408e-9230-0c1881900219
Hunt, Katherine
5eab8123-1157-4d4e-a7d9-5fd817218c6e
Tuffrey-Wijne, Irene
6d476d0a-9285-44a6-8fbc-885611d6c83b

Adam, Emily, Sleeman, Katherine E, Brearley, Sarah, Hunt, Katherine and Tuffrey-Wijne, Irene (2020) The palliative care needs of adults with intellectual disabilities and their access to palliative care services: a systematic review. Palliative Medicine, 34 (8), 1006-1018. (doi:10.1177/0269216320932774).

Record type: Review

Abstract

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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The palliative care needs of adults with intellectual disabilities and their access to palliative care services A systematic review - Accepted Manuscript
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Accepted/In Press date: 18 May 2020
e-pub ahead of print date: 17 June 2020
Published date: 1 September 2020
Keywords: Palliative care, health services accessibility, health services needs and demand, intellectual disability

Identifiers

Local EPrints ID: 441395
URI: http://eprints.soton.ac.uk/id/eprint/441395
ISSN: 0269-2163
PURE UUID: bad76a8e-d328-46cb-a223-3c0ae3fce342
ORCID for Katherine Hunt: ORCID iD orcid.org/0000-0002-6173-7319

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Date deposited: 11 Jun 2020 16:30
Last modified: 28 Apr 2022 02:03

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Contributors

Author: Emily Adam
Author: Katherine E Sleeman
Author: Sarah Brearley
Author: Katherine Hunt ORCID iD
Author: Irene Tuffrey-Wijne

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