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End of life care in paediatric settings: UK national survey

Andre Bedendo Orcid Logo, Andrew Papworth Orcid Logo, Bryony Beresford Orcid Logo, Bob Phillips Orcid Logo, Chakrapani Vasudevan, Gabriella Lake Walker Orcid Logo, Helen Weatherly Orcid Logo, Richard Feltbower Orcid Logo, Sebastian Hinde Orcid Logo, Catherine Elizabeth Hewitt Orcid Logo, Fliss Murtagh Orcid Logo, Jane Noyes Orcid Logo, Julia Hackett Orcid Logo, Richard Hain, Sam Oddie Orcid Logo, Gayathri Subramanian Orcid Logo, Andrew Haynes Orcid Logo, Lorna Fraser Orcid Logo

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...

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Published in: BMJ Supportive & Palliative Care
ISSN: 2045-435X 2045-4368
Published: BMJ Publishing Group Ltd 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa68566
first_indexed 2025-01-09T20:33:50Z
last_indexed 2025-01-09T20:33:50Z
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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.</abstract><type>Journal Article</type><journal>BMJ Supportive &amp; Palliative Care</journal><volume>0</volume><journalNumber/><paginationStart/><paginationEnd/><publisher>BMJ Publishing Group Ltd</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>2045-435X</issnPrint><issnElectronic>2045-4368</issnElectronic><keywords/><publishedDay>28</publishedDay><publishedMonth>11</publishedMonth><publishedYear>2024</publishedYear><publishedDate>2024-11-28</publishedDate><doi>10.1136/spcare-2023-004673</doi><url/><notes/><college>COLLEGE NANME</college><CollegeCode>COLLEGE CODE</CollegeCode><institution>Swansea University</institution><apcterm>Another institution paid the OA fee</apcterm><funders>This study is funded by the NIHR Health service and Delivery Programme (NIHR129213). 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spelling 2024-12-13T11:36:45.9082796 v2 68566 2024-12-13 End of life care in paediatric settings: UK national survey 0cac9e375f563bc5927ed86a04606566 Richard Hain Richard Hain true false 2024-12-13 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. Journal Article BMJ Supportive & Palliative Care 0 BMJ Publishing Group Ltd 2045-435X 2045-4368 28 11 2024 2024-11-28 10.1136/spcare-2023-004673 COLLEGE NANME COLLEGE CODE Swansea University Another institution paid the OA fee 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. 2024-12-13T11:36:45.9082796 2024-12-13T11:23:03.5500833 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Nursing Andre Bedendo 0000-0001-9554-6564 1 Andrew Papworth 0000-0002-3244-2634 2 Bryony Beresford 0000-0003-0716-2902 3 Bob Phillips 0000-0002-4938-9673 4 Chakrapani Vasudevan 5 Gabriella Lake Walker 0009-0005-2693-4041 6 Helen Weatherly 0000-0002-9117-6452 7 Richard Feltbower 0000-0002-1728-9408 8 Sebastian Hinde 0000-0002-7117-4142 9 Catherine Elizabeth Hewitt 0000-0002-0415-3536 10 Fliss Murtagh 0000-0003-1289-3726 11 Jane Noyes 0000-0003-4238-5984 12 Julia Hackett 0000-0003-1720-6665 13 Richard Hain 14 Sam Oddie 0000-0001-8701-4912 15 Gayathri Subramanian 0000-0003-1771-4002 16 Andrew Haynes 0000-0003-3030-629X 17 Lorna Fraser 0000-0002-1360-4191 18
title End of life care in paediatric settings: UK national survey
spellingShingle End of life care in paediatric settings: UK national survey
Richard Hain
title_short End of life care in paediatric settings: UK national survey
title_full End of life care in paediatric settings: UK national survey
title_fullStr End of life care in paediatric settings: UK national survey
title_full_unstemmed End of life care in paediatric settings: UK national survey
title_sort End of life care in paediatric settings: UK national survey
author_id_str_mv 0cac9e375f563bc5927ed86a04606566
author_id_fullname_str_mv 0cac9e375f563bc5927ed86a04606566_***_Richard Hain
author Richard Hain
author2 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
format Journal article
container_title BMJ Supportive & Palliative Care
container_volume 0
publishDate 2024
institution Swansea University
issn 2045-435X
2045-4368
doi_str_mv 10.1136/spcare-2023-004673
publisher BMJ Publishing Group Ltd
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Nursing{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Nursing
document_store_str 0
active_str 0
description 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.
published_date 2024-11-28T08:37:10Z
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score 11.04748

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