A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care PedPalASCNET

PedPalASCNET Team

The ultimate goal of PedPalASCNET is to determine, through research, the interventions that are most effective in strengthening positive and mitigating negative outcomes of children with life-threatening conditions and the relative impact on their families.

Investigators

The network’s inter-disciplinary team of Co-Investigators, plus affiliated collaborators and students, represents a broad range of organizations, including hospitals, hospices, and universities.

The team brings together clinical and research expertise in nursing, social work, medicine, and anthropology.

PRINCIPAL INVESTIGATOR

Hal Siden, MD, MHSc, FRCPC

Hal Siden

  • Medical Director, Canuck Place Children’s Hospice, Vancouver
  • Clinical Associate Professor, Dept. of Pediatrics, University of British Columbia
  • In addition to his clinical work in pediatrics, palliative medicine and complex pain, Dr. Siden’s recent research has focused on pain management in pediatrics and palliative and end-of-life care. He is specifically interested in new and emerging areas in biological markers of pain in children as well as imaging.

PROGRAM MANAGER

Gail Andrews, M.ed.

Gail_Andrews_2016

  • Program Manager, PedPalASCNet
  • Child and Family Research Institute, BC Children’s Hospital
  • Gail Andrews holds a Master’s degree in Human Development & Applied Psychology from University of Toronto. She has coordinated and managed various large research projects, including a multi-site, interdisciplinary study called “Charting the Territory,” applying a mixed-methods approach to investigating the experiences of families with children in pediatric palliative care. Gail’s research interests focus on quality of life improvements for families of children with life threatening conditions as they navigate the often complex decision making processes and service deliveries of pediatric palliative care. She is currently enrolled in the accelerated Nursing Program (RN) at the University of British Columbia.

CO-INVESTIGATORS

Susan Cadell, MSW, PhD

Susan Cadell

  • Director, Renison School of Social Work, University of Waterloo
  • Affiliate Investigator, Centre for Community Child Health Program, Child & Family Research Institute, BC Research Institute for Children’s & Women’s Health, Vancouver
  • Dr. Cadell’s research concerns positive aspects of stress and coping, particularly post-traumatic growth. She is also investigating the positive aspects of such adverse situations as caring for a child with a life-limiting illness, spinal cord injury, lone motherhood, parental bereavement and aging with HIV/AIDS. Her current research concerns couples coping with caregiving as well as undertaking an exploration of physical manifestations of stress.

Betty Davies, RN, PhD, FAAN

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  • Professor and Senior Scholar, School of Nursing, University of Victoria
  • Affiliate Investigator, Centre for Community Child Health Program, Child & Family Research Institute, BC Research Institute for Children’s & Women’s Health, Vancouver
  • Professor Emerita, Family Health Care Nursing, University of California, San Francisco
  • Dr. Davies edited the section on Pediatric Palliative Care in the first three editions of the Oxford Textbook of Palliative Care, the first textbook about palliative care
  • Dr. Davies is internationally recognized for her work on death, dying, and bereavement, particularly from the perspective of families and vulnerable populations, and in the role of nurses in palliative and end of life care. Her research is centered within the framework of palliative and end-of-life care, with her focus being on child and family health. She is particularly interested in the psychosocial aspects of care, throughout the course of a disease, for the family whose child is seriously ill or who dies.

Marie-Claude Grégoire, MD, MSc, FRCPC

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  • Physician with Pediatric Palliative Care Service at IWK Health Centre
  • Assistant Professor of Pediatrics and Anaesthesiology, Dalhousie University
  • Dr. Grégoire’s research focuses on assessment and management of symptoms, especially pain and breathlessness.

 

Stephen Liben, MD

liben_stephen

  • Director, Pediatric Palliative Care Program, Montreal Children’s Hospital
  • Associate Professor, Pediatrics, McGill University
  • One of the founders of Lighthouse, the first pediatric respite hospice for children in Quebec
  • Co-editor of first Oxford textbook of Pediatric Palliative Care and organizes the Pediatric component of the biannual International Congress on Palliative Care
  • Dr. Liben’s research interests are in post traumatic growth in parents of children with life limiting illnesses, experiences of families of the most ill children in the pediatric intensive care unit, and better understanding the illness trajectory and lived experiences of children with neurological genetic disease and their families.

Mary Ellen Macdonald, PhD

MEM

  • Assistant Professor, Division of Oral Health and Society, McGill University
  • Dr. Macdonald is a medical anthropologist with postdoctoral training in Pediatric Palliative Care at Montreal Children’s Hospital
  • Dr. Macdonald’s research focuses on family bereavement after the death of a child. Recent work includes a gender analysis of pediatric palliative care research and a socio-cultural analysis of child-death.
  • Dr Macdonald is also involved with medical education research, and research involving cultural aspects of health and illness with Aboriginal communities in Montreal and Northern Quebec.

Adam Rapoport, MD, FRCPC, MHSc

Formal Adam

  • Medical Director, Palliative and Bereavement Care Service, The Hospital for Sick Children, Toronto
  • Pediatric Palliative Care consultant, Max and Beatrice Wolfe Children’s Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto
  • Dr. Rapoport has a Masters of Health Sciences in Bioethics from the University of Toronto Joint Centre for Bioethics. His academic work focuses on the intersection of his 3 primary interests: pediatrics, palliative care, and ethics.

Marli Robertson, MBChB, FRACP

marli

  • Section Chief, Palliative Medicine, Department of Paediatrics, University of Calgary
  • Medical Director, Children’s Hospice and Palliative Care Service and Rotary Flames House
  • Dr. Robertson previously worked for 15 years as a specialist in Pediatric Gastroenterology and Nutrition with particular research interests in children with developmental disabilities and infants with short bowel syndrome.

Rose Steele, RN, PhD

Rose Steele profile_picture

  • Professor, School of Nursing, York University
  • Dr. Steele has had a broad and eclectic career during her 35 years in nursing and brings a wealth of experience and knowledge to her research, teaching, and professional activities. Her current research focus is pediatric palliative care and she has presented and published extensively in this area. Dr. Steele’s research takes a holistic approach to families’ bio-psycho-social-spiritual experiences.

Christina Vadeboncoeur, MD, FRCPC

Vadeboncoeur, Christina

  • Pediatrician on the Palliative Care Outreach Team at the Children’s Hospital of Eastern Ontario (CHEO)
  • Dr. Vadeboncoeur provides care to children at CHEO, at Roger’s House Children’s Hospice and in the community
  • Dr. Vadeboncoeur’s research interests include medications, hydration and nutrition at end-of-life, and pain and symptom management in children with life-limiting illness.

Kimberley Widger, RN, PhD, CHPCN(C)

Kim Widger

  • Assistant Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto
  • Nursing Research Associate, Hospital for Sick Children
  • Dr. Widger’s research focuses on identifying and measuring structures, processes, and outcomes that are indicative of high-quality pediatric palliative and end-of-life care and finding ways to ensure optimal care is provided regardless of setting or diagnosis.

ALUMNI

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