Evidence map›Paper›PMID 42204504›Full record

ArticleBMC palliative care2026

"We do what needs to be done": caregivers' experiences of healthcare and support for people with multiple long-term conditions in the last year of life.

Sarah P Bowers, Ellen Kerr, Eilish Murphy, Jillian Galbraith, Colin McIntyre, Margaret C Weir, Maureen Ward, Sarah E E Mills, Linda Williams, Jo Bowden and 1 more

Abstract read
In one paragraph

Article in BMC palliative care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

11 authors.

Sarah P BowersSchool of Medicine, University of St Andrews, North Haugh Street, St Andrews, KY16 9TF, UK. sb461@st-andrews.ac.uk.ORCID http://orcid.org/0000-0003-0722-8318
Ellen KerrSchool of Medicine, University of St Andrews, North Haugh Street, St Andrews, KY16 9TF, UK.
Eilish MurphyNHS Fife, Fife, UK.
Jillian GalbraithSchool of Medicine, Fife Community Advisory Council, University of St Andrews, St Andrews, UK.
Colin McIntyreSchool of Medicine, Fife Community Advisory Council, University of St Andrews, St Andrews, UK.
Margaret C WeirSchool of Medicine, Fife Community Advisory Council, University of St Andrews, St Andrews, UK.
Maureen WardSchool of Medicine, Fife Community Advisory Council, University of St Andrews, St Andrews, UK.
Sarah E E MillsSchool of Medicine, University of St Andrews, North Haugh Street, St Andrews, KY16 9TF, UK.ORCID http://orcid.org/0000-0001-7988-9655
Linda WilliamsEdinburgh Clinical Trials Unit, Usher Institute, The University of Edinburgh, Edinburgh, UK.ORCID http://orcid.org/0000-0002-6317-1718
Jo BowdenSchool of Medicine, University of St Andrews, North Haugh Street, St Andrews, KY16 9TF, UK.ORCID http://orcid.org/0000-0002-1088-0254
Frances QuirkSchool of Medicine, University of St Andrews, North Haugh Street, St Andrews, KY16 9TF, UK.ORCID http://orcid.org/0000-0002-4177-0461

Funding

Multimorbidity Doctoral Training Programme for Health Professionals, which is supported by the Wellcome Trust 223499/Z/21/Z
6 · The paper itself

Abstract

backgroundTowards the end of life, people with multiple long-term conditions face an array of challenges associated with their growing healthcare needs including unclear illness trajectories and multifaceted uncertainty. Caregivers, most often family or friends, play a key role in providing and coordinating care at the end of life. This study aimed to explore, through the perspective of bereaved caregivers, the experiences of healthcare and support in the last year of life for people with multiple long-term health conditions.

methodsInterpretative Phenomenological Analysis was used to analyse semi-structured interviews with 12 bereaved caregivers who had cared for relatives with multiple long-term conditions over the last year of life. Public advisors with lived experience as caregivers were key contributors to this study, aiding in study conceptualisation, design and analysis.

resultsThere were five key group experiential themes identified: (i) Multiple conditions mixed in together impacting prognostication, (ii) Dynamic, coordinated care from healthcare services supported caregivers, (iii) Information from various sources helped caregivers make person-centred decisions, (iv) Caregivers had to decide when and where to seek help, with a preference for known, trusted healthcare professionals and (v) Being a caregiver has a changing, persisting impact.

conclusionsBereaved caregivers faced challenges in appraising the multiple conditions that their relative had towards the end of life. This, alongside prior healthcare experiences and information gathered by caregivers, influenced how they accessed healthcare and support for their relative. Empowering caregivers and integrating their experiences into clinical practice will be key to supporting them in providing necessary care for those close to them at the end of their life.

Indexed as

CaregiversMultiple Chronic ConditionsTerminal CareAdultAgedAged, 80 and overBereavementFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchSocial SupportEnd of Life CareFamily CaregiverInformal CaregiverMultimorbidityPalliative CarePatient and public involvementQualitative

Identifiers

PMID42204504
PMCPMC13393848

What OpenQuestion holds

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LicenceCC BY
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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.