Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
by
Katherine E. Nelson 1,2, James A. Feinstein 3,4
, Cynthia A. Gerhardt 5,6, Abby R. Rosenberg 7,8, Kimberley Widger 1,9, Jennifer A. Faerber 10 and Chris Feudtner 11,12,*
Katherine E. Nelson 1,2, James A. Feinstein 3,4, Cynthia A. Gerhardt 5,6, Abby R. Rosenberg 7,8, Kimberley Widger 1,9, Jennifer A. Faerber 10 and Chris Feudtner 11,12,*
1
Pediatric Advanced Care Team, Department of Paediatrics, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada
2
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON M5T 3M6, Canada
3
Adult and Child Consortium for Health Outcomes Research and Delivery Science, Children’s Hospital Colorado, Aurora, CO 80045, USA
4
Division of General Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA
5
Center for Biobehavioral Health, The Research Institute at Nationwide Children’s Hospital, Columbus, OH 43205, USA
6
Departments of Pediatrics and Psychology, The Ohio State University, Columbus, OH 43210, USA
7
Department of Pediatrics, University of Washington School of Medicine; Cancer and Blood Disorders Center, Seattle Children’s Hospital, Seattle, WA 98105, USA
8
Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA 98101, USA
9
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON M5T 1P8, Canada
10
Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
11
Pediatric Advanced Care Team, The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
12
Department of Pediatrics, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA 19104, USA
*
Author to whom correspondence should be addressed.
Children 2018, 5(3), 32; https://doi.org/10.3390/children5030032
Received: 9 January 2018 / Revised: 13 February 2018 / Accepted: 16 February 2018 / Published: 26 February 2018
(This article belongs to the Special Issue Pediatric Palliative Care)
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.
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Keywords:
pediatric palliative care; research methods; outcomes
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited
MDPI and ACS Style
Nelson, K.E.; Feinstein, J.A.; Gerhardt, C.A.; Rosenberg, A.R.; Widger, K.; Faerber, J.A.; Feudtner, C. Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies. Children 2018, 5, 32.
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