Open AccessState 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
Author(s) -
Melissa K. Cousino,
Blyth Lord,
Elizabeth D. Blume
Publication year - 2021
Publication title -
cardiology in the young
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.386
H-Index - 54
eISSN - 1467-1107
pISSN - 1047-9511
DOI - 10.1017/s104795112100233x
Subject(s) - medicine , multidisciplinary approach , palliative care , multidisciplinary team , medical education , diversity (politics) , curriculum , end of life care , population , nursing , family medicine , psychology , political science , pedagogy , law , environmental health
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.