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<\/a><\/p>\nWhen considering the future of children\u2019s palliative care within the UK, it is recognised that an equitable palliative care service is needed (Together for Short Lives 2023). Currently the differences in the availability of children\u2019s palliative care services vary considerably (Hakanson et al<\/em> 2017; Renton et al<\/em> 2018; Mitchell et al<\/em> 2019), and where these services are available the provision is not consistent (Fraser, Fleming and Paslow 2018; Mitchell et al<\/em> 2019; Malcolm and Knighting 2021). The National Child Maternity Database (NCMD) shows a steady increase in deaths of 0-17 year olds, with child deaths due to life limiting and life threatening conditions (LLCs and LTCs) recording significantly higher than unanticipated deaths (NCMD 2023). Whilst advances in medicine and technology have seen children who would previously have died in childhood, transitioning into adulthood, the unpredictable nature of LLCs and LTCs, means that support for their health care needs is required throughout their childhood, a \u201cthread that runs through children\u2019s lives\u201d (Delamere et al<\/em> 2024 p.2). As such, the services that are currently available are going to find themselves under further increasing pressure.<\/p>\n In considering the potential impact of providing children\u2019s palliative and end of life care to an increasing number of children, some assumptions need to be challenged. There is a belief that the preferred place of death for adults and children is home (Ellingsen et al <\/em>2014; Pollock, 2015; Rainsford et al <\/em>2018). This belief is based on adult studies (Bluebond-Langner et al<\/em> 2013; Bluebond-Langner et al<\/em> 2015), and both Pollock (2015) and Rainsford et al<\/em> (2018) argue that the assertion that home is the preferred place is not supported by evidence. Rather, it is suggested that the preferred place of death is a \u201csafe\u201d place which may or may not be home (Rainsford et al<\/em> 2018; Dunbar, Carter and Brown, 2019). \u00a0Where home is not felt to be a safe place, a hospice can be considered as such (Simpson and Penrose, 2011; Price, McCloskey and Brazil, 2017; Rainsford et al<\/em> 2018). A recent scoping review (Davis et al 2024a) explored what factors influence the parent and\/or child\u2019s choice of place of death for a child with a non-oncological complex care condition, when death is expected. It concluded that informed discussions with families that recognise the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care. An ethnophenomenological study exploring the choice of place for the death of a child with a non-oncological life limiting or life-threatening condition, used the stories of bereaved parents (Davis et al 2024b). For four of the families in this study, whose chosen place was a hospice, but where death occurred in hospital; the importance of the place of where the child died moved from being the aim, to being part of the journey, and being able to spend time as a family at a hospice (using a hospice cold bedroom for the child who had died) became the focus.<\/p>\n In the UK, children\u2019s hospices actively encourage a home-like environment through the use of furnishings and the use of rooms as shared living spaces, to try to create a positive welcoming environment to where families can feel they belong (Holdsworth, 2015; Mitchell et al<\/em> 2016; Dunbar, Carter and Brown, 2019). Dunbar, Carter and Brown (2019) refer to this as place bonding; where a place can be perceived as somewhere the child and family can feel safe, and to where they can \u201ccome home\u201d (p101); a place which can offer ontological security by enabling the family to maintain their usual daily routines, whilst providing a feeling of safety with the presence of children\u2019s nurses (Ellingsen et al <\/em>2014; Dunbar, Carter and Brown, 2019).<\/p>\n In challenging the assumption of home as the preferred place, the challenge for children\u2019s palliative care is about how that choice is offered. Davis et al (2024b) identified the importance of discussion that clinical staff have with children, parents and families, and how this can impact not only their preferred place to die, but also their end of life care. \u00a0Other implications for practice include how the outcome of these conversations can impact on the grief journey of the parent (Davis et al 2024b).<\/p>\n Recognition needs to be given to the complimentary roles of children\u2019s hospice teams and community paediatric palliative care teams, and their parts in the palliative care (Delamere et al<\/em> 2024 p.2). The need for increased funding in children\u2019s palliative care has long been recognised (Together for Short Lives 2024), but consideration also needs to be given to how this is presented across the children\u2019s palliative care sector.<\/p>\n References<\/u><\/p>\n Bluebond-Langner, M. et al<\/em> (2013) Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy, Palliaitive Medicine,<\/em> 27(8), pp705-713. DOI:10.1177\/0269216313483186.<\/p>\n Bluebond-Langner, M., Beecham, E. and Jones, L. (2015) \u2018Problems with preference and place of death for children too\u2019, BMJ<\/em>, (19th November), p. 1. DOI:10.1136\/bmj.h6123.<\/p>\n Bogetz, J. et al<\/em> (2020) \u201cI could never prepare for something like the death of my own child\u201d: Parental perspectives on preparedness at end of life for children with complex chronic conditions death, Journal of Pain and Symptom Management, <\/em>60(6), pp1154-1162. DOI:10.1016\/j.jpainsymman.2020.06.035.<\/p>\n Davis, G., Gaskin, K., Moln\u00e1r, G., & Bentley, J. (2024a). Places of Farewell: A Scoping Review Exploring Factors Influencing the Choice of Place of Death for Children when Death is Expected. Comprehensive Child and Adolescent Nursing<\/em>,\u00a047<\/em>(3), 151\u2013169. https:\/\/doi.org\/10.1080\/24694193.2024.2374239<\/a><\/p>\n Davis G, Molnar G, Bentley J, Gaskin K (2024b) Places of farewell \u2013 bereaved parents\u2019 decision making about their child\u2019s place of death, Evidence Based Nursing<\/em> available at: https:\/\/blogs.bmj.com\/ebn\/2024\/02\/11\/places-of-farewell-bereaved-parents-decision-making-about-their-childs-place-of-death\/<\/a> (accessed 27\/9\/24)<\/p>\n Delamere, T et al <\/em>(2024) Defining and quantifying population-level need for children\u2019s palliative care: findings from a rapid scoping review, BMC Palliative Care, <\/em>23(212). DOI:10.1186\/s12904-024-01539-8<\/p>\n Dunbar, H., Carter, B. and Brown, J. (2019) Coming \u201chome\u201d: Place bonding for parents accessing or considering hospice based respite, Health & Place, <\/em>57, pp. 101-106. DOI:10.1016\/j.healthplace.2019.03.004.<\/p>\n Ellingsen, S. et al<\/em> (2014) Being in transit and in transition. The experience of time at the place, when living with severe incurable disease \u2013 a phenomenological study, Scandinavian Journal of Caring Sciences, <\/em>28, pp. 458-468. DOI: 10.1111\/scs.12067.<\/p>\n Fraser, L., Fleming, S. and Paslow, R. (2018) Changing place of death in children who died after discharge from paediatric intensive care units: a national, data linkage study, Palliative Medicine, <\/em>32(2), pp. 337-346. DOI: 10.1177\/0269216317709711.<\/p>\n H\u00e5kanson, C. et al<\/em> (2017) Place of death of children with complex chronic conditions: cross-national study of 11 countries, European Journal of Paediatrics, <\/em>176, pp. 327-335. DOI:10.1007\/s00431-016-2837-0.<\/p>\n Holdsworth, L. (2015) Bereaved carers\u2019 accounts of the end of life and the role of care providers in a \u201cgood death\u201d: a qualitative study, Palliative Medicine, <\/em>29(9), pp. 834-841. DOI:10.1177\/0269216315584865.<\/p>\n Malcolm, C. and Knighting, K. (2021) What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents, Palliative Medicine, <\/em>35(8), pp. 1602-1611. DOI:10.1177\/02692163211023300.<\/p>\n Mitchell, S. et al<\/em> (2019) Parental experiences of end of life care decision making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study, BMJ Open, <\/em>9, pp. 1-10 DOI:10.1136\/bmjopen-2018-028548.<\/p>\n NCMD (2023) Child Death review Data Release: Year ending 31 March 2023 <\/em>https:\/\/www.ncmd.info\/publications\/child-death-data-2023\/<\/a> (accessed 22\/09\/24).<\/p>\n Pollock, K. (2015) Is home always the best and preferred place of death, BMJ, <\/em>351, pp. 1-3. DOI:10.1136\/bmj.h4855.<\/p>\n Price, J., McCloskey, S. and Brazil, K. (2017) The role of hospice in the transition from hospital to home for technology-dependent children \u2013 a qualitative study, Journal of Clinical Nursing, <\/em>27, pp. 396-406. DOI:10.1111\/jocn.13941.<\/p>\n Rainsford, S. et al<\/em> (2018) The \u201csafe death\u201d: an ethnographic study exploring the perspectives of rural palliative care patients and family caregivers, Palliative Medicine, <\/em>32(10), pp. 1575-1583. DOI:10.1177\/0269216318800613.<\/p>\n Renton, K. et al<\/em> (2018) Factors associated with place of death for children in South Yorkshire: a retrospective cohort study, BMJ Supportive and Palliative Care, <\/em>10(e10), pp. 1-4. DOI:10.1136\/bmjspcare-2018-001584.<\/p>\n Together for Short Lives (2023) A Manifesto for Palliative and End of Life Care<\/em> https:\/\/www.togetherforshortlives.org.uk\/changing-lives\/speaking-up-for-children\/policy-advocacy\/a-manifesto-for-palliative-and-end-of-life-care\/<\/a> (accessed 22\/09\/24).<\/p>\n Together for Short Lives (2024) Five \u201cmust-dos\u201d for the new UK Government <\/em>https:\/\/www.togetherforshortlives.org.uk\/changing-lives\/speaking-up-for-children\/policy-advocacy\/five-must-dos-for-the-new-uk-government\/<\/a> (accessed 27\/09\/24)<\/p>\n <\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" In this week’s blog, the 5th and final of our CYP series, Gilda Davis @GildaMDavis, Senior Lecturer in Children’s Nursing at the University of Worcester discusses challenges affecting children’s palliative care. When considering the future of children\u2019s palliative care within the UK, it is recognised that an equitable palliative care service is needed (Together for […]<\/p>\n