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.
Citation
Scott, H. M., Coombes, L., Braybrook, D., Roach, A., Harðardóttir, D., Bristowe, K., Ellis-Smith, C., Higginson, I., Gao, W., Bluebond-Langner, M., Farsides, B., Murtagh, F. E., Fraser, L. K., & Harding, R. (in press). COVID-19: Impact on Pediatric Palliative Care. Journal of pain and symptom management, https://doi.org/10.1016/j.jpainsymman.2022.02.330
