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. 2020 Sep;34(8):1006-1018.
doi: 10.1177/0269216320932774. Epub 2020 Jun 17.

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

Emily Adam  1 , Katherine E Sleeman  1 , Sarah Brearley  2 , Katherine Hunt  3 , Irene Tuffrey-Wijne  4
Affiliations

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

Emily Adam et al. Palliat Med. 2020 Sep.

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.

Keywords: Palliative care; health services accessibility; health services needs and demand; intellectual disability.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Screening process based on the PRISMA flow diagram. *Wrong publication: fell into one of the following categories in the exclusion criteria: ‘discussion and opinion papers, conference abstracts, editorials, letters, comments, guidelines’. **Wrong outcome: did not include ‘Any outcomes relating to palliative care needs of adults with intellectual disabilities’ or ‘Any outcomes describing barriers and/or facilitators to accessing generalist or specialist palliative care’ as listed in the inclusion criteria.
Figure 2.
Figure 2.
Participants across studies.
Figure 3.
Figure 3.
Conceptual model of barriers and facilitators to accessing palliative care for adults with intellectual disabilities.
See this image and copyright information in PMC

References

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