Evidence map›Paper›PMID 40415057›Full record

ArticleThe patient2025

What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.

Debbie Braybrook, Lucy Coombes, Hannah M Scott, Daney Harðardóttir, Anna Roach, Jemimah Bariuan, Clare Ellis-Smith, Julia Downing, Fliss E M Murtagh, Myra Bluebond-Langner and 3 more

Abstract read
In one paragraph

Article in The patient, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 pooled it
–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

3 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. 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

13 authors.

Debbie BraybrookKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Lucy CoombesKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Hannah M ScottKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Daney HarðardóttirKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Anna RoachFaculty of Population Health Sciences, Great Ormond Street Institute of Child Health, London, UK.
Jemimah BariuanFaculty of Life Sciences and Medicine, King's College London, GKT School of Medical Education, London, UK.
Clare Ellis-SmithKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Julia DowningKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Fliss E M MurtaghWolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
Myra Bluebond-LangnerLouis Dundas Centre for Children's Palliative Care, University College London, London, UK.
Lorna K FraserKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Richard HardingKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK.
Katherine BristoweKing's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, James Clerk Maxwell Building, 57 Waterloo Road, Waterloo, London, SE1 8WA, UK. katherine.bristowe@kcl.ac.uk.ORCID 0000-0003-1809-217X

Funding

H2020 European Research Council 772635
6 · The paper itself

Abstract

backgroundGlobally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves.

objectiveWe aimed to determine what constitutes good quality palliative care from the perspectives of children with life-limiting or life-threatening conditions and their parents.

methodsWe analysed semi-structured qualitative interviews using reflexive thematic analysis informed by the European Association for Palliative Care charter of palliative care for children and young people, and Bronfenbrenner's bioecological model. Participants included 26 children aged 5-17 years, and 40 parents of children aged 0-17 years, with a range of cancer and non-cancer diagnoses in nine UK paediatric palliative care services (hospitals and hospices).

resultsQuality paediatric palliative care can be both enacted or interrupted across the five domains of the bioecological model. Honest timely communication with the child and family (microsystem), and collaborative relationships between care teams and others in the child's life (mesosystem), are vital. Care experiences are negatively affected by inequities in care provision (exosystems), and society's reluctance to discuss mortality in childhood (macrosystem). Children need to enjoy what matters to them, and maintain social connections, and plan for the future, even if facing a shortened life (chronosystem).

conclusionsChildren and parents are experts in their condition and should be actively involved in care discussions, through communication tailored to the child's pace and preferences, and support advocating for and coordinating care services. Fostering strong and collaborative relationships builds trust and helps children and families to feel safe, included and supported.

Indexed as

Palliative CareParentsQuality of Health CareAdolescentChildChild, PreschoolCommunicationFemaleHumansInfantInfant, NewbornInterviews as TopicMaleQualitative ResearchUnited Kingdom

Identifiers

PMID40415057
PMCPMC12408654

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

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.