Evidence map›Paper›PMID 41163209›Full record

ArticleBMC palliative care2025

Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study.

Miriam White, Michael Connolly, Andrew Davies

Abstract read
In one paragraph

Article in BMC palliative care, 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

3 authors.

Miriam WhiteRoyal Surrey County Hospital, Guildford, UK.
Michael ConnollyUniversity College Dublin, Our Lady's Hospice & Care Services, Dublin, Ireland.
Andrew DaviesUniversity of Surrey, Guildford, UK. andavies@tcd.ie.

Funding

National Institute for Health and Care Research NIHR131687
6 · The paper itself

Abstract

backgroundThis qualitative study was undertaken to obtain feedback from informal carers about their experiences of involvement in a cluster randomised trial of clinically-assisted hydration in the last days of life ("CHELsea II trial").

methodsInformal carers that had taken part in the trial post-bereavement postal survey, and had expressed an interest in taking part in further research, were approached about this post-bereavement qualitative study. Interviews were conducted remotely, using a semi-structured interview schedule that asked about the impact of the research on patient / their end-of-life care, the impact of the research on the informal carer, and the informal carers views on research at the end-of-life. The interview transcripts were thematically analysed.

resultsFifteen informal carers took part in the study prior to thematic saturation. Invariably informal carers reported that there was no negative impact on the patient or themselves, and were positive about taking part in future end-of-life research (if the situation occurred). The analysis generated three themes: (a) Purpose, helping, and no disruption; (b) Preparing for what was to come; and (c) Timing of research at the end-of-life.

conclusionsThis study confirms that research can be undertaken in patients at the end-of-life without negatively impacting the experience. Moreover, patients and their informal carers want to take part in such research, as it provides them with purpose during this time, and gives them the chance of helping future patients.

trial registrationISRCT Registry (registry number - ISRCTN65858561) - registered 14/09/2021.

Indexed as

BereavementCaregiversTerminal CareAdultAgedAged, 80 and overFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchSurveys and QuestionnairesClinically assisted hydrationInformal carersInterviewsPalliative careTerminal care

Identifiers

PMID41163209
PMCPMC12570650

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Registered trials

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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.