ArticleJournal of research in nursing : JRN2019
Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability.
Article in Journal of research in nursing : JRN, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
4 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.Palliative medicine · 2020Pooled it
- Provision of palliative and end-of-life care by community health nurses: A scoping review on the challenges and potential solutions.International journal of nursing studies advances · 2026Review
- Article
- Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.Journal of intellectual disabilities : JOID · 2021Article
Corrections and comments
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Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited.
aimsThis paper thus seeks to answer the question 'How and when are nurses involved in providing care at end of life for people with intellectual disability?'
methodsA total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis.
resultsFindings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified.
conclusionsNurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.
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Registered trials
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