Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study

Emma Victoria McLorie; Julia Hackett; Laura Barrett; George Peat; Helen Weatherly; Sebastian Hinde; Gabriella Walker; Jane Noyes; Sam Oddie; Chakrapani Vasudevan; Richard G Feltbower; Bob Phillips; Catherine Hewitt; Richard Hain; Gayathri Subramanian; Andrew Haynes; Andrew Papworth; Lorna Katharine Fraser; Fliss E M Murtagh

doi:10.1177/02692163251320204

Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study

Emma Victoria McLorie, Julia Hackett, Laura Barrett, George Peat, Helen Weatherly, Sebastian Hinde, Gabriella Walker, Jane Noyes, Sam Oddie, Chakrapani Vasudevan, Richard G Feltbower, Bob Phillips, Catherine Hewitt, Richard Hain, Gayathri Subramanian, Andrew Haynes, Andrew Papworth, Lorna Katharine Fraser, Fliss E M Murtagh

Research output: Contribution to journal › Article › peer-review

Abstract

BACKGROUND: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care.

AIM: To explore healthcare professionals' experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation.

DESIGN: Qualitative study employing online focus groups, analysed using framework analysis.

SETTING/PARTICIPANTS: Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units.

RESULTS: A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals' awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable.

CONCLUSIONS: This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.

Original language	English
Article number	2692163251320204
Number of pages	16
Journal	Palliative Medicine
DOIs	https://doi.org/10.1177/02692163251320204
Publication status	E-pub ahead of print - 24 Feb 2025

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10.1177/02692163251320204Licence: CC BY-NC

Healthcare professionals’ perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study
© The Author(s) 2025
Final published version, 633 KBLicence: CC BY-NC

Cite this

McLorie, E. V., Hackett, J., Barrett, L., Peat, G., Weatherly, H., Hinde, S., Walker, G., Noyes, J., Oddie, S., Vasudevan, C., Feltbower, R. G., Phillips, B., Hewitt, C., Hain, R., Subramanian, G., Haynes, A., Papworth, A., Fraser, L. K., & Murtagh, F. E. M. (2025). Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study. Palliative Medicine, Article 2692163251320204. Advance online publication. https://doi.org/10.1177/02692163251320204

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title = "Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study",

abstract = "BACKGROUND: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care.AIM: To explore healthcare professionals' experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation.DESIGN: Qualitative study employing online focus groups, analysed using framework analysis.SETTING/PARTICIPANTS: Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units.RESULTS: A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals' awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable. CONCLUSIONS: This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.",

author = "McLorie, {Emma Victoria} and Julia Hackett and Laura Barrett and George Peat and Helen Weatherly and Sebastian Hinde and Gabriella Walker and Jane Noyes and Sam Oddie and Chakrapani Vasudevan and Feltbower, {Richard G} and Bob Phillips and Catherine Hewitt and Richard Hain and Gayathri Subramanian and Andrew Haynes and Andrew Papworth and Fraser, {Lorna Katharine} and Murtagh, {Fliss E M}",

note = "{\textcopyright} The Author(s) 2025",

year = "2025",

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doi = "10.1177/02692163251320204",

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McLorie, EV , Hackett, J , Barrett, L , Peat, G , Weatherly, H , Hinde, S, Walker, G, Noyes, J, Oddie, S, Vasudevan, C, Feltbower, RG, Phillips, B , Hewitt, C, Hain, R, Subramanian, G, Haynes, A, Papworth, A , Fraser, LK & Murtagh, FEM 2025, 'Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative study', Palliative Medicine. https://doi.org/10.1177/02692163251320204

TY - JOUR

T1 - Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings

T2 - A multi-site qualitative study

AU - McLorie, Emma Victoria

AU - Hackett, Julia

AU - Barrett, Laura

AU - Peat, George

AU - Weatherly, Helen

AU - Hinde, Sebastian

AU - Walker, Gabriella

AU - Noyes, Jane

AU - Oddie, Sam

AU - Vasudevan, Chakrapani

AU - Feltbower, Richard G

AU - Phillips, Bob

AU - Hewitt, Catherine

AU - Hain, Richard

AU - Subramanian, Gayathri

AU - Haynes, Andrew

AU - Papworth, Andrew

AU - Fraser, Lorna Katharine

AU - Murtagh, Fliss E M

PY - 2025/2/24

Y1 - 2025/2/24

N2 - BACKGROUND: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care.AIM: To explore healthcare professionals' experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation.DESIGN: Qualitative study employing online focus groups, analysed using framework analysis.SETTING/PARTICIPANTS: Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units.RESULTS: A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals' awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable. CONCLUSIONS: This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.

AB - BACKGROUND: Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care.AIM: To explore healthcare professionals' experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation.DESIGN: Qualitative study employing online focus groups, analysed using framework analysis.SETTING/PARTICIPANTS: Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units.RESULTS: A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals' awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable. CONCLUSIONS: This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.

U2 - 10.1177/02692163251320204

DO - 10.1177/02692163251320204

M3 - Article

C2 - 39995206

SN - 0269-2163

JO - Palliative Medicine

JF - Palliative Medicine

M1 - 2692163251320204

ER -