TY - JOUR

T1 - End of life care in paediatric settings

T2 - UK national survey

AU - Bedendo, Andre

AU - Papworth, Andrew

AU - Beresford, Bryony

AU - Phillips, Bob

AU - Vasudevan, Chakrapani

AU - Lake Walker, Gabriella

AU - Weatherly, Helen

AU - Feltbower, Richard

AU - Hinde, Sebastian

AU - Hewitt, Catherine Elizabeth

AU - Murtagh, Fliss

AU - Noyes, Jane

AU - Hackett, Julia

AU - Hain, Richard

AU - Oddie, Sam

AU - Subramanian, Gayathri

AU - Haynes, Andrew

AU - Fraser, Lorna

N1 - © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.

PY - 2024/11/28

Y1 - 2024/11/28

N2 - OBJECTIVES: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.METHODS: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.RESULTS: 91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.CONCLUSIONS: Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.

AB - OBJECTIVES: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.METHODS: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.RESULTS: 91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.CONCLUSIONS: Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.

U2 - 10.1136/spcare-2023-004673

DO - 10.1136/spcare-2023-004673

M3 - Article

C2 - 39609076

JO - BMJ Supportive and Palliative Care

JF - BMJ Supportive and Palliative Care

SN - 2045-435X

ER -