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Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children’s hospital
  1. Indira Umezurike1,2,
  2. Mariana Dittborn1,
  3. James Whitelaw3,
  4. Helen Bedford2,
  5. Joe Brierley1
  1. 1Paediatric Bioethics Centre, Great Ormond Street Hospital for Children NHS Trust, London, UK
  2. 2Population, Policy and Practice, UCL GOS Institute of Child Health, London, UK
  3. 3Leicester Children's Hospital, Leicester, UK
  1. Correspondence to Dr Joe Brierley, NIHR Great Ormond Street Hospital Biomedical Research Centre, London, WC1N 1EH, UK; joe.brierley{at}gosh.nhs.uk

Abstract

Background To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare professionals caring for children with LLC is needed.

Aim To explore the barriers paediatricians face in initiating and implementing palliative and end-of-life care for children with LLC.

Methods Due to the challenges of COVID-19, the study was performed as a service evaluation using semi-structured interviews and an online questionnaire with consultant paediatricians in general paediatrics, community paediatrics and multiple subspecialties at a UK children’s hospital between December 2020 and August 2021. Twelve interviews and 18 online questionnaires were completed. Interviews were analysed using reflexive thematic analysis, and descriptive statistics were used for questionnaire responses.

Results Recurring themes from both data sets were further analysed and five themes were developed: (1) Problems with the leadership of palliative and end-of-life care; (2) Problems with preparing advanced care plans; (3) Lack of training in paediatric palliative care and advanced communication; (4) Problems communicating with families; and (5) Lack of recognition of children with LLC and high-profile cases.

Conclusions We found that the barriers to effective palliative and end-of-life planning are multifaceted and pervasive, so healthcare professionals must establish clearer pathways to overcome them. Approaches suggested included (1) discussing palliative care for children with LLC at professional encounters, for example, departmental meetings, peer-review meetings and morbidity and mortality meetings and (2) advanced communication training in palliative and end-of-life care.

  • Palliative Care
  • Paediatrics

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Footnotes

  • Contributors IU conceived the original idea for this service evaluation conducted for an MSc Paediatrics and Child Health and drafted the initial manuscript; MD/JB supervised the project in the GOSH Paediatric Bioethics Centre and JW in the index Paediatric Department. All authors revised it critically for important intellectual content and approved the final version for publication. IU is guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.