COVID-19: Impact on Pediatric Palliative Care

Hannah May Scott; Lucy Coombes; Debbie Braybrook; Anna Roach; Daney Harðardóttir; Katherine Bristowe; Clare Ellis-Smith; Irene Higginson; Wei Gao; Myra Bluebond-Langner; Bobbie Farsides; Fliss Em Murtagh; Lorna K Fraser; Richard Harding

doi:10.1016/j.jpainsymman.2022.02.330

COVID-19: Impact on Pediatric Palliative Care

J Pain Symptom Manage. 2022 Jul;64(1):e1-e5. doi: 10.1016/j.jpainsymman.2022.02.330. Epub 2022 Feb 26.

Affiliations

¹ Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute (H.M.S, D.B., D.H., K.B., C.ES., I.H., W.G., R.H.), King's College London, London, UK. Electronic address: hannah.m.scott@kcl.ac.uk.
² Florence Nightingale Faculty of Nursing Midwifery and Palliative Care (L.C.), Cicely Saunders Institute, King's College London, London, UK; Royal Marsden NHS Foundation Trust, London, UK.
³ Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute (H.M.S, D.B., D.H., K.B., C.ES., I.H., W.G., R.H.), King's College London, London, UK.
⁴ Florence Nightingale Faculty of Nursing Midwifery and Palliative Care (A.R.), Cicely Saunders Institute, King's College London, London, UK; University College London, London, UK.
⁵ University College London (M.B.L.), Louis Dundas Centre for Children's Palliative Care, London, UK; Rutgers University, New Jersey, USA.
⁶ Brighton and Sussex Medical School (B.F.), University of Sussex, Brighton, UK.
⁷ Wolfson Palliative Care Research Centre (F.EM.M.), Hull York Medical School, University of Hull, Hull, UK.
⁸ Martin House Research Centre (L.K.F.), Department of Health Sciences, University of York, York, UK.

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; Pediatrics; palliative care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
COVID-19*
Child
Communicable Disease Control
Family / psychology
Humans
Palliative Care* / psychology
Pandemics