Evidence map›Paper›PMID 41949805›Full record

ArticleJournal of general internal medicine2026

What Should We Aim for when Addressing Uncertainty from Serious Illness? A Stakeholder Focus Group Study.

Rachel Chen, Joodi Mourhli, Ben Bowers, Jonathan Koffman, Stephen Barclay, Anna Spathis, Simon Etkind

Abstract read
In one paragraph

Article in Journal of general internal medicine, 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
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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

7 authors.

Rachel ChenUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK. rachelchen@hms.harvard.edu.ORCID 0000-0001-8361-729X
Joodi MourhliUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK.
Ben BowersUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK.
Jonathan KoffmanHull York Medical School, Wolfson Palliative Care Research Centre, York, UK.
Stephen BarclayUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK.
Anna SpathisUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK.
Simon EtkindUniversity of Cambridge, Department of Public Health and Primary Care (PHPC), Cambridge Biomedical Campus, Cambridge, UK.ORCID 0000-0003-2863-8893

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundUncertainty is ubiquitous in serious illness. It defines experiences of diagnosis, current illness, and future prognosis and is experienced across physical, psychological, and temporal domains. Uncertainty impacts patients, carers, healthcare professionals and health systems; it cannot be eliminated, but it remains unclear how best to address it.

objectiveWe aimed to identify core goals and approaches when addressing irreducible uncertainty in serious illness to inform the development and implementation of effective interventions. We aimed to answer the question, "What should individual clinicians do to deliver 'good care' for patients experiencing irreducible uncertainty associated with serious illness?"

designOne-day rapid consensus workshop held in the United Kingdom, during which five mixed focus groups of 6-8 participants discussed uncertainty in serious illness and the goals of addressing it.

participantsThirty-four participants, including 21 health and social care professionals, 8 researchers, 3 policymakers, and 3 patient representatives. Several participants held multiple roles. Age range 33-61 (median 47), 20 (67%) female. APPROACH: Focus group transcripts were analysed inductively using reflexive thematic analysis to generate a thematic model. KEY

resultsAnalysis identified the overarching purpose of addressing uncertainty as "Finding security in uncertainty together," comprising four key domains of: (1) relationships and trust across the care team; (2) personalisation of uncertainty management to an individual's need and clinical context; (3) reframing uncertainty as normal and tolerable; and (4) moving forward together through shared decision-making and parallel planning.

conclusionsThis study has generated a new model to approach uncertainty in serious illness. These findings suggest shifting the focus from the patient alone as an individual to strengthening relationality across the care team. Our findings emphasise the need to psychologically reframe living with uncertainty as a core goal, and to negotiate and align the needs of patients, carers, and clinicians when sharing uncertainty.

Indexed as

Critical IllnessStakeholder ParticipationAdultFemaleFocus GroupsHumansMaleMiddle AgedUncertaintyUnited Kingdomperson-centred carerelational careserious illnessshared decision-makinguncertainty

Identifiers

PMID41949805
PMCPMC13421509

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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.