@article{78d4f0038db1472697dfa7d59b75e01b,
title = "Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study",
abstract = "Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children{\textquoteright}s hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.",
keywords = "Child, existential concerns, palliative care, religious concerns, spiritual concerns, terminal illness",
author = "Scott, {Hannah May} and Lucy Coombes and Debbie Braybrook and Anna Roach and Daney Har{\dh}ard{\'o}ttir and Katherine Bristowe and Clare Ellis-Smith and Julia Downing and Murtagh, {Fliss E.M.} and Bobbie Farsides and Fraser, {Lorna K.} and Myra Bluebond-Langner and Richard Harding",
note = "Funding Information: We thank the European Research Council and the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust for the financial support needed to undertake this study. The Children{\textquoteright}s Palliative care Outcome Scale (C-POS) Study Steering Group members are: AK Anderson, Jo Bayly, Lydia Bate, Myra Bluebond-Langner, Debbie Box, Katherine Bristowe, Rachel Burman, Lizzie Chambers, Lucy Coombes, Alan Craft, Fin Craig, Aislinn Delaney, Jonathan Downie, Julia Downing, Bobbie Farsides, Sara Fovargue, Lorna Fraser, Jane Green, Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Jo Laddie, Angela Logun, Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Fliss Murtagh, Eve Namisango, Veronica Neefjes, Cheryl Norman, Sue Picton, Christina Ramsenthaler, Anna Roach, Ellen Smith, Michelle Ward, Mark Whiting. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The C-POS study is supported by the European Research Council{\textquoteright}s Horizon 2020 programme [Grant ID: 772635]; this article reflects only the author{\textquoteright}s views, and the European Research Council is not liable for any use that may be made of the information contained therein. The C-POS study is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Hannah Scott, King{\textquoteright}s College London, is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Fliss Murtagh is a UK National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care. Professor Myra Bluebond-Langner{\textquoteright}s post is supported by funding from The True Colours Trust. All research at Great Ormond Street Hospital NHS Foundation Trust is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The funding bodies above did not have any role in the design of the study, collection, analysis, interpretation of data or writing of the manuscript. Funding Information: We thank the European Research Council and the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust for the financial support needed to undertake this study. The Children{\textquoteright}s Palliative care Outcome Scale (C-POS) Study Steering Group members are: AK Anderson, Jo Bayly, Lydia Bate, Myra Bluebond-Langner, Debbie Box, Katherine Bristowe, Rachel Burman, Lizzie Chambers, Lucy Coombes, Alan Craft, Fin Craig, Aislinn Delaney, Jonathan Downie, Julia Downing, Bobbie Farsides, Sara Fovargue, Lorna Fraser, Jane Green, Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Jo Laddie, Angela Logun, Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Fliss Murtagh, Eve Namisango, Veronica Neefjes, Cheryl Norman, Sue Picton, Christina Ramsenthaler, Anna Roach, Ellen Smith, Michelle Ward, Mark Whiting. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The C-POS study is supported by the European Research Council{\textquoteright}s Horizon 2020 programme [Grant ID: 772635]; this article reflects only the author{\textquoteright}s views, and the European Research Council is not liable for any use that may be made of the information contained therein. The C-POS study is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Hannah Scott, King{\textquoteright}s College London, is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Fliss Murtagh is a UK National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care. Professor Myra Bluebond-Langner{\textquoteright}s post is supported by funding from The True Colours Trust. All research at Great Ormond Street Hospital NHS Foundation Trust is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The funding bodies above did not have any role in the design of the study, collection, analysis, interpretation of data or writing of the manuscript. Publisher Copyright: {\textcopyright} The Author(s) 2023.",
year = "2023",
month = jun,
doi = "10.1177/02692163231165101",
language = "English",
volume = "37",
pages = "856--865",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "Sage Publications",
number = "6",
}
