Research Priorities in Pediatric Palliative Care

Abstract

Objective To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents to formulate a consensus on the prioritization of the PPC research agenda. Study design A 4-round modified Delphi online survey was administered, to PPC experts and to parents of children who had received PPC. In Round 1, research priorities were spontaneously generated. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. A fourth iteration asked participants to rank the research priorities that had reached at least 80% consensus. Results A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in Round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for Round 2 ratings (n = 130, 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98, 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. Conclusions This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

Research priority setting in childhood chronic disease: a systematic review

“…Priorities to develop effective communication strategies were described 43 69 70 105. Evaluating the roles of patients and parents in healthcare decision making was prioritised,44 58 105 including developing decision aids to help parents make decisions for or with their child 105…”

Paediatric palliative care and intellectual disability—A unique context

“…In particular, research is needed in the areas of symptom management and care coordination, communication and decision making, psychosocial and bereavement support and education/training. Children's understanding of death and dying is another suggested focus of further research (Baker et al., ; Downing, Knapp, Muckaden, Fowler‐Kerry, & Marston, ) and is particularly important in the context of intellectual disability.…”

Going straight to the source: A pilot study of bereaved parent‐facilitated communication training for pediatric subspecialty fellows

“…Importantly, investigation of decision‐making interventions and the experiences of bereaved parents have been identified as a research priority in palliative care. This pilot study addresses this call to action, using the experiences of bereaved parents to improve the self‐reported comfort and competency of pediatric subspecialty fellowship trainees in the communication of difficult information that is integral to shared medical decision making. Moreover, participation in this training not only benefitted the trainees; bereaved parents themselves stated benefits from participation.…”

“…In this context, the Accreditation Council for Graduate Medical Education has identified communication skills as a core competence for all training physicians, requiring programs to evaluate the communication skills of trainees. Despite this recognized need for communication training, few established training programs focus on communication, particularly regarding the provision of “bad news.” Importantly, both clinicians and bereaved parents recognize EOL decision making as being a very difficult process, and they likewise identify clear communication as a top priority in EOL care …”