Understanding what matters to young people with life-limiting and life-threatening conditions: a qualitative study to inform the development of a young person end-of-life capability measure.

Isabella Floredin, Samantha Husbands, Susan Neilson, Paul Mark Mitchell, Joanna Coast

Abstract read

In one paragraph

Article in Social science & medicine (1982), 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.

Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: a UK think-aloud study.BMC palliative care · 2026
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

5 authors.

Isabella FloredinHealth Economics and Health Policy (HEHP@Bristol), Population Health Sciences, Bristol Medical School, University of Bristol, 1-5 Whiteladies Road, Bristol, BS8 1NU, UK. Electronic address: isabella.floredin@bristol.ac.uk.

Samantha HusbandsHealth Economics and Health Policy (HEHP@Bristol), Population Health Sciences, Bristol Medical School, University of Bristol, 1-5 Whiteladies Road, Bristol, BS8 1NU, UK.

Susan NeilsonInstitute of Clinical Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.

Paul Mark MitchellHealth Economics and Health Policy (HEHP@Bristol), Population Health Sciences, Bristol Medical School, University of Bristol, 1-5 Whiteladies Road, Bristol, BS8 1NU, UK.

Joanna CoastHealth Economics and Health Policy (HEHP@Bristol), Population Health Sciences, Bristol Medical School, University of Bristol, 1-5 Whiteladies Road, Bristol, BS8 1NU, UK.

Funding

Wellcome Trust 205384

6 · The paper itself

Abstract

End-of-life care encompasses a range of services aimed at delivering holistic interventions. Yet, economic evaluations of such services have tended to be focused on health-related outcomes, which may be too narrow to adequately capture outcomes at the end of life. Capability measures aim to capture wider outcomes focusing on what people can do and be in their lives. Capability measures are not yet available for children and young people at the end of life. This study aimed to identify important capabilities for young people aged 14-25 years across the end-of-life trajectory, to inform attribute development for a capability measure for use in economic evaluation of interventions at the end of life. Twenty-one in-depth interviews were undertaken with young people aged 14-25 years with a life-limiting or life-threatening condition (n = 6), parents or guardians (n = 6), and bereaved family members (n = 9) in England and Wales between May 2021-September 2022. Interviews focused on what is important to the young people now and in the future. Constant comparative analysis methods were used to explore capabilities and factors influencing capability achievement (conversion factors). Seven capabilities were generated: Experience and enjoy; Independence; Freedom from physical suffering; Freedom from emotional suffering; Formal care and support; Control; Identity. Five conversion factors were generated: Access to care and support; Continuity and consistency in care and support; Communication with services; Coordination between services; and COVID-19. Findings can inform attribute development for a young person capability measure for use in economic evaluation capturing the broader outcomes of end-of-life care.

Indexed as

Terminal CareAdolescentAdultEnglandFemaleHumansInterviews as TopicMaleQualitative ResearchWalesYoung AdultCapability measuresConversion factorsEnd-of-life careLife-limiting conditionsLife-threatening conditionsQualitative methodsYoung people

Identifiers

PMID40763405

DOI10.1016/j.socscimed.2025.118335

PMCPMC7618747

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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.