@article{48c3895067a24055acfa63ba94f267f8,
title = "COVID-19: Impact on Pediatric Palliative Care",
abstract = "Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives: To explore the impact of the COVID-19 pandemic and lockdowns on this population. Methods: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. Results: COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusion: Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays.",
keywords = "COVID-19, palliative care, Pediatrics",
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 Irene Higginson and Wei Gao and Myra Bluebond-Langner and Bobbie Farsides and Murtagh, {Fliss EM} and Fraser, {Lorna K.} and Richard Harding",
note = "Funding Information: Principal Investigator: Richard Harding. This article reflects only the author's views and the European Research Council is not liable for any use that may be made of the information contained therein. Professor Fliss Murtagh is a UK National Institute for Health 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'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 C-POS study is supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King'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. Acknowledgments: We thank the European Research Council for the financial support needed to undertake this study. The Children's Palliative Care Outcome Scale (C-POS) Study Steering Group members are: Anna-Karenia Anderson, Lydia Bates, Rachel Burman, Lizzie Chambers, Alan Craft, Finella Craig, Aislinn Delaney, Julia Downing, Sara Fovargue, Ann Goldman, Jane Green, Ping Guo, Julie Hall-Carmichael, Michelle Hills, Mevhibe Hocaoglu, Gill Hughes, Joanna Laddie, Angela Logun, Steve Marshall, Linda Maynard, Andrina McCormack, Renee McCulloch, Eve Namisango, Cheryl Norman, Susan Picton, Pat Sartori. Funding: This work was supported by the European Research Council's Horizon 2020 programme [Grant ID: 772635]. No conflicts of interest declared. Ethical approval: Granted by the Bloomsbury research ethics committee (HRA:19/LO/0033). Permission given for anonymized direct quotes to be used in the report, publications and presentations, No data are available. Not applicable. Funding Information: The C-POS study is supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King'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. Funding Information: Funding: This work was supported by the European Research Council's Horizon 2020 programme [Grant ID: 772635 ]. No conflicts of interest declared. Funding Information: Professor Myra Bluebond-Langner'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. Funding Information: Acknowledgments: We thank the European Research Council for the financial support needed to undertake this study. The Children's Palliative Care Outcome Scale (C-POS) Study Steering Group members are: Anna-Karenia Anderson, Lydia Bates, Rachel Burman, Lizzie Chambers, Alan Craft, Finella Craig, Aislinn Delaney, Julia Downing, Sara Fovargue, Ann Goldman, Jane Green, Ping Guo, Julie Hall-Carmichael, Michelle Hills, Mevhibe Hocaoglu, Gill Hughes, Joanna Laddie, Angela Logun, Steve Marshall, Linda Maynard, Andrina McCormack, Renee McCulloch, Eve Namisango, Cheryl Norman, Susan Picton, Pat Sartori. Publisher Copyright: {\textcopyright} 2022 The Authors",
year = "2022",
month = jul,
day = "1",
doi = "10.1016/j.jpainsymman.2022.02.330",
language = "English",
volume = "64",
pages = "e1--e5",
journal = "Journal of pain and symptom management",
issn = "0885-3924",
publisher = "Elsevier",
number = "1",
}