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Review
. 2025 May;38(3):e70067.
doi: 10.1111/jar.70067.

The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis

Corrina Alex Bebbington  1 , Elizabeth Croot  1
Affiliations
Review

The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis

Corrina Alex Bebbington et al. J Appl Res Intellect Disabil. 2025 May.

Abstract

Background: People with intellectual disabilities face inequities in access to end-of-life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end-of-life care.

Methodology: Data from 93 participants in five qualitative studies were thematically synthesised to identify optimal care and inform recommendations.

Results: Four overarching and interrelated analytical themes were generated. (1) Optimal care recognises heterogeneity and is person-centred. It aligns with individuals' wishes and preferences which are established through 'active' communication. (2) This enables an individual's holistic support needs to be identified. (3) It fulfils ethical obligations around autonomy, equity and a person's 'right to know'. (4) It involves the necessary people to ensure all needs are met.

Conclusion: Optimal end-of-life care is person-centred, holistic, uses 'active' communication, meets ethical obligations and involves the necessary people in care.

Keywords: end‐of‐life care; inequalities; intellectual disabilities; literature review; palliative care; qualitative evidence synthesis.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
A PRISMA flow diagram showing the results of study screening.
FIGURE 2
FIGURE 2
A diagram of the four overarching analytical themes generated through the thematic synthesis and their relationships with the descriptive themes and related sub‐themes (dark blue = analytical themes, light blue = descriptive themes, white = subthemes).
See this image and copyright information in PMC

References

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