Home > Research > Publications & Outputs > The palliative care needs of adults with intell...

Links

Text available via DOI:

View graph of relations

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

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Published

Standard

The palliative care needs of adults with intellectual disabilities and their access to palliative care services : A systematic review. / Adam, E.; Sleeman, K.E.; Brearley, S.; Hunt, K.; Tuffrey-Wijne, I.

In: Palliative Medicine, Vol. 34, No. 8, 01.09.2020, p. 1006-1018.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Harvard

APA

Vancouver

Author

Adam, E. ; Sleeman, K.E. ; Brearley, S. ; Hunt, K. ; Tuffrey-Wijne, I. / The palliative care needs of adults with intellectual disabilities and their access to palliative care services : A systematic review. In: Palliative Medicine. 2020 ; Vol. 34, No. 8. pp. 1006-1018.

Bibtex

@article{b617210d2c874aaab35d8d22d9ea6997,
title = "The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic 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. {\textcopyright} The Author(s) 2020.",
keywords = "health services accessibility, health services needs and demand, intellectual disability, Palliative care",
author = "E. Adam and K.E. Sleeman and S. Brearley and K. Hunt and I. Tuffrey-Wijne",
year = "2020",
month = sep,
day = "1",
doi = "10.1177/0269216320932774",
language = "English",
volume = "34",
pages = "1006--1018",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "SAGE Publications Ltd",
number = "8",

}

RIS

TY - JOUR

T1 - The palliative care needs of adults with intellectual disabilities and their access to palliative care services

T2 - A systematic review

AU - Adam, E.

AU - Sleeman, K.E.

AU - Brearley, S.

AU - Hunt, K.

AU - Tuffrey-Wijne, I.

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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. © The Author(s) 2020.

AB - 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. © The Author(s) 2020.

KW - health services accessibility

KW - health services needs and demand

KW - intellectual disability

KW - Palliative care

U2 - 10.1177/0269216320932774

DO - 10.1177/0269216320932774

M3 - Journal article

VL - 34

SP - 1006

EP - 1018

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 8

ER -