Investigators: Kimberley Widger RN PhD and Dr. Ann Tourangeau RN PhD
We are doing this research because we believe it is important to provide the highest quality of care possible to dying children and their families. We want to hear from parents both what is going well and what needs to be changed. Our goal is to develop a survey to ask parents about the quality of the care they received and identify areas that need to be changed. This study will help to ensure that care given to dying children and their families in the future is the best that it can be.
This research is part of the PhD work of the main investigator (Kimberley Widger). The research has three phases:
Phase 1 included focus groups with parents. We asked parents what they believe is important to quality end-of-life care for children and their families. We had 3 focus groups with a total of 10 parents. All groups were held in Toronto or Hamilton.
Phase 2 included creating the survey questions about quality care. The questions were based on what parents said was important during the focus groups. Health professionals and parents reviewed all of the questions to make sure they are clear and easy to understand. We also asked if the questions seemed to be about quality care and if anything was missing. There were 8 health professionals and 6 parents who took part in phase 2 of the study.
Phase 3 of the study included 128 mothers from across Canada. Mothers were recruited through 10 different children’s hospitals and hospices involved in the study. The name and contact information of the investigator from each site is listed below. These mothers answered all of the survey questions about the quality of care that they received. We have done a number of tests to see how well the questions work to measure the quality of children’s end-of-life care (reliability and validity). Final results will be posted soon.
January 2012 – The study is now complete and results summaries will be posted soon.
For more information about this study please contact Kimberley Widger at firstname.lastname@example.org.
Information about grief or sources of support can be found on the following website:
Poster Presentations: Click on the poster title below to view poster
Sharyn Gibbins, NNP, PhD
Head of Interdisciplinary Research & Evidence Based Practice, NICU
Lynn Grandmaison Dumond, RN(EC), MScN
Advanced Practice Nurse
Palliative Care Outreach Program
Phone: 613-523-6300 #610
Dr. Katrin Scheinemann MD MSc
Division of Hematology/ Oncology, Department of Pediatrics
Assistant Professor, McMaster University
Phone: 905-521-2100 ext 73818
Dr. Hal Siden MD MHSc FRCPC
Clinical Associate Professor, Faculty of Medicine, Department of Pediatrics
University of British Columbia
Grace MacConnell RN MN CNHPC(C)
Clinical Nurse Specialist
Pediatric Palliative Care Service
Lisa Pearlman RN(EC),MN ACNP
Pediatric Symptom Management and Supportive Care
Phone: 519.685.8500 x 52288
Laura Beaune, MSW, RSW, Res. Dip.SW
Palliative and Bereavement Care Service
Phone: 416-813-7654 ext. 3372
Dawn Davies MD, FRCP(C)
Associate Professor, Dept. of Pediatrics,University of Alberta
Medical Director, Pediatric Palliative Care Program, Capital Health
Simone Stenekes RN MN
Pediatric Symptom Management & Palliative Care Service
Winnipeg Regional Health Authority