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Complexity in Care: scoping the ethical, practical and systemic challenges facing children with chronic conditions during the COVID-19 pandemic

Changes made to the provision of, and access to, usual care and support pathways as a result of COVID-19 raise important ethical questions, in particular for children with chronic conditions.

Regardless of the specificities of service delivery, challenges related to efforts to maintain public health and to meet the continuing and complex needs of these children are common across different health and care systems such as the US and the UK health system. 1,2

This project aims to undertake preliminary scoping work and to develop a clear rationale and a robust methodology for a larger research proposal that will directly address questions related to allocation decisions and social justice in this context.

The project has issued a call for papers for a special issue of the Monash Bioethics Review: Ethical, Practical and Systemic Challenges Facing Children with Complex Chronic Conditions: A Global Health Perspective.

Objectives

  • To understand the ways in which the different sub-categories of children with chronic conditions, their families, and providers interact with the health system and social provision and to explore modifications in resources and care pathways during the pandemic.
  • To develop and potentially pilot methods for identifying how decisions were made about these changes and the values and processes that informed these decisions.
  • To refine the key ethical questions that need to be attended to in order to ensure good care for children with chronic conditions.

References

1. Brisca G, Vagelli G, Tagliarini G, Rotulo A, Pirlo D, Romanengo M, Piccotti E. The impact of COVID-19 lockdown on children with medical complexity in pediatric emergency department. Am J Emerg Med. 2020 Nov 28: S0735-6757(20)31097-4

2. RCPCH. (2020). The impact of COVID-19 on child health services – report. https://www.rcpch.ac.uk/resources/impact-covid-19-child-health-services-report#main-findings

project team

  • Sapfo Lignou Ethox Centre, University of Oxford
  • Rebecca Seltzer Berman Institute of Bioethics; Johns Hopkins University School of Medicine
  • Mark Sheehan Ethox Centre, University of Oxford
  • Yoram Unguru Berman Institute of Bioethics, Johns Hopkins University
  • Michael Dunn Centre for Biomedical Ethics, National University of Singapore
  • Jeff Jones Berman Institute of Bioethics, Johns Hopkins University & Ethox Centre, University of Oxford