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. 2025 May 25.
doi: 10.1007/s40271-025-00744-8. Online ahead of print.

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

Debbie Braybrook  1 , Lucy Coombes  1   2 , Hannah M Scott  1 , Daney Harðardóttir  1 , Anna Roach  3 , Jemimah Bariuan  4 , Clare Ellis-Smith  1 , Julia Downing  1   5 , Fliss E M Murtagh  6 , Myra Bluebond-Langner  7   8 , Lorna K Fraser  1 , Richard Harding  1 , Katherine Bristowe  9
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What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents

Debbie Braybrook et al. Patient. .

Abstract

Background: Globally, 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.

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

Methods: We 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).

Results: Quality 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).

Conclusions: Children 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.

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Conflict of interest statement

Declarations. Funding: The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: the Children’s Palliative care Outcome Scale was funded by a European Research Council’s Consolidator Award (Grant ID: 772635) with the overall aim to develop and validate a person-centred outcome measure for children, young people, and their families affected by life-limiting and life-threatening conditions. Principal Investigator: Richard Harding. This article reflects only the authors’ views and the European Research Council is not liable for any use that may be made of the information contained therein. Fliss E.M. Murtagh is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Hannah M. Scott, King’s College London, is supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Conflict of interest: 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, Lorna K. Fraser, Richard Harding and Katherine Bristowe have no conflicts of interest that are directly relevant to the content of this article. Ethics approval: Ethics approval was granted by the Bloomsbury Research Ethics Committee (HRA:19/LO/0033). Consent to participate: Not applicable. Consent for publication: Not applicable. Availability of data and material: It is not possible for the data from this study to be made available. Code availability: Not applicable. Author contributions: All authors: conception and design of the work. LC, DB and AR: data collection. KB and DB: data analysis. All authors: interpretation of data. KB and DB: draft manuscript preparation. All authors: critical review and revision of the manuscript.

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