Journal article 10 views
End of life care in paediatric settings: UK national survey
Andre Bedendo 
,
Andrew Papworth ,
Bryony Beresford ,
Bob Phillips ,
Chakrapani Vasudevan,
Gabriella Lake Walker ,
Helen Weatherly ,
Richard Feltbower ,
Sebastian Hinde ,
Catherine Elizabeth Hewitt ,
Fliss Murtagh ,
Jane Noyes ,
Julia Hackett ,
Richard Hain,
Sam Oddie ,
Gayathri Subramanian ,
Andrew Haynes ,
Lorna Fraser
,
Andrew Papworth ,
Bryony Beresford ,
Bob Phillips ,
Chakrapani Vasudevan,
Gabriella Lake Walker ,
Helen Weatherly ,
Richard Feltbower ,
Sebastian Hinde ,
Catherine Elizabeth Hewitt ,
Fliss Murtagh ,
Jane Noyes ,
Julia Hackett ,
Richard Hain,
Sam Oddie ,
Gayathri Subramanian ,
Andrew Haynes ,
Lorna Fraser
BMJ Supportive & Palliative Care
Swansea University Author: Richard Hain
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DOI (Published version): 10.1136/spcare-2023-004673
Abstract
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), paedi...
| Published in: | BMJ Supportive & Palliative Care |
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| ISSN: | 2045-435X 2045-4368 |
| Published: |
BMJ Publishing Group Ltd
2024
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| Online Access: |
Check full text
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| URI: | https://cronfa.swan.ac.uk/Record/cronfa68566 |
| Abstract: |
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. |
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| College: |
Faculty of Medicine, Health and Life Sciences |
| Funders: |
This study is funded by the NIHR Health service and Delivery Programme (NIHR129213). FM is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. |