Developing a Canadian lexicon for pediatric palliative care: a modified Delphi study

Pediatric Palliative Care (PPC) has long been subject to various misconceptions about its purpose, potential, and integration. Clear and agreed-upon language has the potential to help demystify and improve awareness of tenets of PPC. Variable use of terminology suggests that current language in the field is shifting and would benefit from consensus-finding. This study aimed to refine an up-to-date Canadian lexicon of terms in PPC using a consensus-based modified Delphi approach with key interest-holders. A small panel of ten Canadian PPC experts, comprised of multiple disciplines, locations, and a parent partner, completed rounds of consultation to define current terminology for the field. The research team conducted an environmental scan, literature review, and consultation meeting leading to the initial inclusion of 50 terms and their definitions. Following the first Delphi round with experts, 47 terms were included, one term excluded, and two terms revised. The second Delphi round led to the inclusion of both revised terms, leading to a total of 49 included terms, defined, as well as endorsed and denounced language. These terms and their definitions were translated into French and peer-reviewed by a subset of participants to develop a bilingual version for Canadian use. A total of 49 terms related to PPC and their respective definitions were produced through this modified Delphi study. This lexicon can serve clinicians, educators, and researchers as standard for the use of terms in PPC in their work.