University of Sussex
JPSM-D-21-01071_R2 Author Accepted Clean.pdf (249.47 kB)

COVID-19: impact on pediatric palliative care

Download (249.47 kB)
journal contribution
posted on 2023-06-10, 02:45 authored by Hannah May Scott, Lucy Coombes, Debbie Braybrook, Anna Roach, Daney Harðardóttir, Katherine Bristowe, Clare Ellis-Smith, Irene Higginson, Wei Gao, Myra Bluebond-Langner, Bobbie FarsidesBobbie Farsides, Fliss E M Murtagh, Lorna K Frase, Richard Harding
Context Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) 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. 106 UK-wide purposively-sampled CYP with LLLTC, parent/carers, siblings, health professionals and commissioners. Results COVID-19 was raised by participants in 12/44 interviews conducted after the UK's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusions Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays.


Publication status

  • Published

File Version

  • Accepted version


Journal of Pain and Symptom Management





Department affiliated with

  • Clinical and Experimental Medicine Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date


First Open Access (FOA) Date


First Compliant Deposit (FCD) Date


Usage metrics

    University of Sussex (Publications)


    No categories selected