What Matters Most
Identifying a Core Indicator Set for Quality Pediatric Palliative Care
The overall goal of this study is to improve the care provided to children living with a serious illness. Pediatric palliative care is an extra layer of support for these children and their families. It is about making each day as good as it can be – whatever that means to a child and family. (Find more information about pediatric palliative care here).
Many different criteria or indicators are currently used to assess the quality of the care provided. If everyone used the same indicators and only the most important ones, we could compare and consistently report on the quality of care provided by different programs.
In this study, two groups (called ‘panels’) of experts from around the world will help us select the indicators that are most important for measuring the quality of care.
The Family Panel will be made of up of children with a serious illness and their families (e.g., parents, siblings, grandparents, etc.).
The Healthcare Professional (HCP) Panel will be made up of clinicians (e.g., doctors, nurses, social workers etc.), researchers, and administrators (e.g., executive director of a palliative care program) who are involved in palliative care for children.
Eligibility
Family Panel
between 12 and 19 years of age and are currently living with a serious illness (for example, cancer, muscular dystrophy, a serious genetic illness, etc.)
OR a family member of a child 19 years old or younger living with a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)
OR a family member of a child who passed away from a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)
Health Care Professional Panel
Time Commitment
Participants will be asked to complete a series of 3 surveys over about an 8-month period. Each survey will take less than 30 minutes to complete. Please watch the video to learn more about the study and the surveys.
Ready to get started?
About the Project
Meet the Research Team
Principal Investigator:
Kimberley Widger RN PhD, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada kim.widger@utoronto.ca
Co-Investigators:
Prasanna Ananth MD PhD, Yale University, Connecticut, USA prasanna.ananth@yale.edu
Justin Baker MD FAAP FAAHPM, St. Jude Children’s Research Hospital, Memphis, USA
Jackie Boyden RN PhD, Children’s Hospital of Philadelphia, Philadelphia, USA boydenj@chop.edu
Francine Buchanan MLIS, Hospital for Sick Children, Toronto, Canada francine.buchanan@sickkids.ca
Poh Heng Chong MBBS PhD, HCA Hospice Care, Singapore pohhengC@hcahospicecare.org.sg
Ross Drake MBChB, Starship Children’s Health, Auckland, New Zealand rossd@adhb.govt.nz
Veronica Dussel MD MPH, Universidad de Buenos Aires, Argentina veronica_dussel@dfci.harvard.edu
Chris Feudtner MD PhD, Children’s Hospital of Philadelphia, Philadelphia, USA feudtner@email.chop.edu
Lorna Fraser PhD MBChB, University of York, England lorna.fraser@york.ac.uk
Marie Friedel PNP PhD, Universite catholique de Louvain, Belgium marie.friedel@uclouvain.be
Anthony Herbert MD, Queensland Children’s Hospital, South Brisbane, Australia Anthony.Herbert@health.qld.gov.au
Emily Johnston MD, University of Alabama at Birmingham, USA ejohnston@peds.uab.edu
Rebecca Kirch BA JD, National Patient Advocate Foundation, Washington, USA Rebecca.Kirch@npaf.org
Blyth Lord MA, Courageous Parents Network, Newton, USA blord@courageousparentsnetwork.org
Mike McNeil MD, St. Jude Children’s Research Hospital, Memphis, USA Micheal.McNeil@STJUDE.ORG
Kate Nelson MD PhD, Hospital for Sick Children, Toronto, Canada kate.nelson@sickkids.ca
Juerg Streuli MD PhD, Stiftung Ostschweizer Kinderspital, Switzerland streuli@ethik.uzh.ch
Rachel Thienprayoon MD Cincinnati Children’s Hospital Medical Center, Cincinnati, USA rachel.thienprayoon@cchmc.org
Joanne Wolfe MD MPH, Boston Children’s Hospital, Boston, USA joanne_wolfe@dcfi.harvard.edu
Research Coordinator/Assistants:
Vishu Chakravarti MSc, Hospital for Sick Children, Toronto, Canada
Ridwaanah Ali RN MN, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Musthafa Raswoli MBBS, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
Research Contact:
Kimberley Widger RN PhD, Principal Investigator, Associate Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
e-mail: kim.widger@utoronto.ca phone: 416-978-7925