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State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop

Published online by Cambridge University Press:  24 June 2021

Melissa K. Cousino Open the ORCID record for Melissa K. Cousino [Opens in a new window] ,
Blyth T. Lord  and
Elizabeth D. Blume
Melissa K. Cousino*
Affiliation:
Department of Pediatrics, Michigan Medicine, Ann Arbor, MI, USA University of Michigan Congenital Heart Center, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Blyth T. Lord
Affiliation:
Courageous Parents Network, Newton, MA, USA
Elizabeth D. Blume
Affiliation:
Department of Pediatrics, Harvard Medical School, Boston, MA, USA Heart Center at Boston Children’s Hospital, Boston, MA, USA
*
Author for correspondence: Melissa K. Cousino, PhD, Department of Pediatrics, Michigan Medicine, 1500 E. Medical Center Dr., Ann Arbor, MI 48109, USA. Tel: (734) 615-2577. E-mail: melcousi@med.umich.edu
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Abstract

Workshop proceedings, priorities, and recommendations from the “State of the Science and Future Directions in Palliative and End-of-Life Care in Pediatric Cardiology,” a Harvard Radcliffe Accelerator Workshop, are detailed. Eight priorities for research were identified, including patient and family decision making, communication, patient and family experience, patient symptom measurement and management, training and curriculum development, teamwork, family hardships and bereavement, and ethical considerations. Barriers to research in this area were also identified: lack of outcome/measurement tools, lack of research funding, small population sizes, lack of effort/protected time for research, undervalued research topic by field and colleagues, and heterogeneous research participant diversity. Priorities and barriers were mostly consistent with those reported by the field of paediatric palliative care at large. These collective, consensus-based findings from diverse, multidisciplinary leaders in the field, as well as parent representatives, provide a catalyst for scientific advancement specific to paediatric and end-of-life care in paediatric cardiology.

Keywords

Palliative careend of lifepaediatric cardiologyresearch
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 3 , March 2022 , pp. 431 - 436
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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Footnotes

*

The Harvard Radcliffe Accelerator Work Group included (in alphabetical order): Elizabeth D. Blume, MD; Kristin M. Burns, MD; Melissa K. Cousino, PhD; Janet Duncan, MSN, CPNP; Angela M. Feraco, MD, MMSc; Seth A. Hollander, MD; Dio Kavalieratos, PhD; Blyth T. Lord, EdM; Kate Middlemiss; Emily Morell, MD; Katie Moynihan, MBBS; Kerri Padgett; Nelangi M. Pinto, MD; Abby R. Rosenberg, MD, MS; Michelle Rybka, MD; Kurt R. Schumacher, MD, MS; Jill M. Steiner, MD, MS; Jennifer K. Walter, MD, PhD, MS.

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