Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Katherine E. Nelson,
James A. Feinstein,
Cynthia A. Gerhardt,
Abby R. Rosenberg,
Kimberley Widger,
Jennifer A. Faerber,
Chris Feudtner
Affiliations
Katherine E. Nelson
Pediatric Advanced Care Team, Department of Paediatrics, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada
James A. Feinstein
Adult and Child Consortium for Health Outcomes Research and Delivery Science, Children’s Hospital Colorado, Aurora, CO 80045, USA
Cynthia A. Gerhardt
Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital, Columbus, OH 43205, USA
Abby R. Rosenberg
Department of Pediatrics, University of Washington School of Medicine; Cancer and Blood Disorders Center, Seattle Children’s Hospital, Seattle, WA 98105, USA
Kimberley Widger
Pediatric Advanced Care Team, Department of Paediatrics, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada
Jennifer A. Faerber
Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Chris Feudtner
Pediatric Advanced Care Team, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
