Evidence map›Paper›PMID 41685618›Full record

SynthesisPalliative & supportive care2026

The roles and experiences of informal caregivers in non-malignant respiratory disease at the end of life: A thematic synthesis of qualitative studies.

Kathy Rogers, Candy McCabe, Natasha Bradley, Alison Llewellyn

Abstract readSystematic Review
In one paragraph

Synthesis in Palliative & supportive 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

4 authors.

Kathy RogersCentre for Health and Clinical Research, School of Health and Social Wellbeing, College of Health, Science and Society, University of the West of England, Bristol, UK.ORCID https://orcid.org/0000-0003-4563-355X
Candy McCabeCentre for Health and Clinical Research, School of Health and Social Wellbeing, College of Health, Science and Society, University of the West of England, Bristol, UK.
Natasha BradleyMarie Curie Palliative Care Research Department, Division of Psychiatry, University College London and Research, Policy & Public Affairs Directorate, Marie Curie, One Embassy Gardens, London, UK.
Alison LlewellynCentre for Health and Clinical Research, School of Health and Social Wellbeing, College of Health, Science and Society, University of the West of England, Bristol, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesThe aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question "what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?"

methodsThis qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.

resultsThematic synthesis of the data generated five analytical themes: SIGNIFICANCE OF

resultsThis evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.

Indexed as

CaregiversTerminal CareAdaptation, PsychologicalHumansQualitative ResearchCaregivingend of lifequalitativerespiratorythematic synthesis

Identifiers

PMID41685618
PMCPMC13166666

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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.