Evidence map›Paper›PMID 39503296›Full record

ArticleJournal of advanced nursing2025

A Qualitative Exploration of Healthcare Workers' Experiences of End of Life Care for People With an Intellectual Disability.

Mary McCarron, Eilish Burke, Philip Mc Callion, Fiona Timmins

Abstract read
In one paragraph

Article in Journal of advanced nursing, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Mary McCarronTrinity Centre for Ageing and Intellectual Disability, Trinity College, The University of Dublin, Dublin, Ireland.
Eilish BurkeTrinity Centre for Ageing and Intellectual Disability, Trinity College, The University of Dublin, Dublin, Ireland.
Philip Mc CallionThe School of Nursing and Midwifery, Trinity College, Dublin, Ireland.
Fiona TimminsUCD School of Nursing, Midwifery and Health Systems, Dublin, Ireland.ORCID https://orcid.org/0000-0002-7233-9412

Funding

All Ireland Institute of Hospice and Palliative Care (AIIHPC)Health Research Board and the Department of Health & Children, Ireland
6 · The paper itself

Abstract

aimTo explore healthcare workers' experiences of end of life care for people with an intellectual disability.

designA descriptive qualitative study.

methodSemi-structured interviews were conducted with 28 healthcare workers who cared for older people with an intellectual disability at their end of life. Data were analysed using thematic analysis and reported according to the COREQ guidelines.

resultsThree major themes emerged: not joining up the dots, living the life desired in one's last days and dealing with death and beyond.

conclusionGaps emerged in the care of the person with intellectual disability. Pain assessment and pain management were particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations, were needed. More needs to be done in terms of education for healthcare workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: There is little consensus or understanding about the palliative care needs of those with intellectual disability. There are often specific challenges around providing palliative care particularly in relation to healthcare staffs' knowledge and confidence in understanding palliative care needs of this group and indeed communicating and assessing particular needs. Staff require educational preparation and training in palliative care to address the particular needs of this cohort. IMPACT: This study revealed that there are gaps emerging in the care of the person with intellectual disability at the end of life. Pain assessment and pain management are particular challenges that require urgent attention. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or publication contribution in this specific study, although IDS-TILDA has a client representative and advisory committee that advise on all aspects of project design and management.

Indexed as

Attitude of Health PersonnelHealth PersonnelIntellectual DisabilityPalliative CareTerminal CareAdultAgedFemaleHumansMaleMiddle AgedQualitative Researchage‐specific caredeathdevelopmental disabilityhospice and palliative nursingintellectual disabilityinterviewspalliative caresemi‐structured interviews

Identifiers

PMID39503296
PMCPMC12159388

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.