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Measuring the Quality of Children’s End-of-Life Care

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 1 Results Summary

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.

Current status:

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

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

Developing a Measure of Quality Pediatric End-of-Life Care: Engaging Parents in the Process (Sept 2010)

Room for Improvement: Mother’s Perspectives on Children’s End-of-Life Care(Sept 2011)

Participating Centres:

Sunnybrook Health Sciences Centre, Toronto

Sharyn Gibbins, NNP, PhD
Head of Interdisciplinary Research & Evidence Based Practice, NICU
Phone: 416-323-6313

Children’s Hospital of Eastern Ontario and Roger’s House, Ottawa

Lynn Grandmaison Dumond, RN(EC), MScN
Advanced Practice Nurse
Palliative Care Outreach Program
Phone: 613-523-6300 #610

McMaster Children’s Hospital, Hamilton

Dr. Katrin Scheinemann MD MSc
Staff Physician
Division of Hematology/ Oncology, Department of Pediatrics
Assistant Professor, McMaster University
Phone: 905-521-2100 ext 73818

Canuck Place Children’s Hospice, Vancouver

Dr. Hal Siden MD MHSc FRCPC
Clinical Associate Professor, Faculty of Medicine, Department of Pediatrics
University of British Columbia
Phone: 604-975-2776

IWK Health Centre, Halifax

Grace MacConnell RN MN CNHPC(C)
Clinical Nurse Specialist
Pediatric Palliative Care Service
Phone: 902-470-7984

Children’s Hospital London Health Sciences Centre, London

Lisa Pearlman RN(EC),MN ACNP
Pediatric Symptom Management and Supportive Care
Phone: 519.685.8500 x 52288

The Hospital for Sick Children, Toronto

Laura Beaune, MSW, RSW, Res. Dip.SW
Research Coordinator
Palliative and Bereavement Care Service
Phone: 416-813-7654 ext. 3372

Stollery Children’s Hospital, Edmonton

Dawn Davies MD, FRCP(C)
Associate Professor, Dept. of Pediatrics,University of Alberta
Medical Director, Pediatric Palliative Care Program, Capital Health
Phone: 780-407-7210

Winnipeg Health Sciences Centre, Winnipeg

Simone Stenekes RN MN
Pediatric Symptom Management & Palliative Care Service
Winnipeg Regional Health Authority
Phone: 204-787-2464

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