Studies In Progress

Assessing the Efficacy of a Psychosocial Intervention Program for siblings of Children

Principal Investigator:  Dr. Maru Barrera

“What factors do children with cancer and childhood cancer survivors say are important

Drs. Lillian Sung and Samantha Anthony

PedPalASCNet: A network for accessible, sustainable, and collaborative research

Dr. H. Siden, MD, MHSc; Dr. S. Cadell, MSW, PhD; Dr. B. Davies, RN, PhD, FAAN; Dr. D. Davies, MD; Dr. M-C Grégoire, MD, PhD; Dr. M. Harlos, MD; Dr. S. Liben, MD; Dr. M-E Macdonald, PhD; Dr. A. Rapoport, MD, FRCPC, MHSc; Dr. S. Spicer, MD; Dr. R. Steele, RN, PhD; Dr. L. Straatman, MD, FRCPC; and Dr. C. Vadeboncoeur, MD

Experiences of Parents of Paediatric Patients with ALL, Two Months After Completion

Principal Investigator: Dr. Barbara Muskat

A Randomized -waitlist contrial to evaluate the efficacy of a social skills intervention for childho

Principal Investigator: M. Barrera, Co-Investigators: Sung L, Bartels, U, Janzen, L, Atenafu, A, Cataudella, D, Zelcer, S, Downie, A, Johnston, D, Brandon, S, Schulte, F, Strother, D, Briere, M, Chung, J, Hukin, J, McConnell, D.

Sibling’s Perspectives: Toward a Better Understanding of their Involvement with

Ceilidh Eaton Russell, CCLs, MSc (candidate), Maru Barrera, Ph.D; Laura Beaune, MSW; Susan Cadell, MSW, PhD; Adam Rapoport, MD,  Maria Rugg, RN, MN, CHPC(C),; Rose Steele, RN, PhD, Kimberley Widger, RN, PhD (c), CHPCN(C).

A systematic review of bereavement after the death of a child: A meta-synthesis of literature on fam

Experiences and perceptions of pediatric health professionals providing end-of-life and palliative c

Principal Investigator:  Dr. Barbara Muskat, PhD, Co-applicants:  Samantha Anthonly, MSW, Laura Beaune, MSW, David Brownstone, MSW, Pam Hubley, RN, MSc, ACNP, Dr. Christine Newman, MD, FRCP, Adam Rapoport, MD, FRCPC, MHSc

Understanding the experiences and support needs of fathers of children with life-limiting illnesses

Principal Investigator and Co-Applicants:  Dr. David Nicholas, PhD, Laura Beaune, MSW, Res.Dip. SW, Dr. Maru Barrera, PhD, Jonathan Blumberg

Palliative medicine physician’s knowledge and comfort caring for pediatric patients

Principal Investigator:  Dr. A. Rapoport, MD, FRCPC, MHSc. Co-applicants:  Ms. F. Srianni, Dr. A Husain, MD, FRCPC & Dr. L. Librach, MD, FRCPC

Parental perceptions of forgoing artificially delivered nutrition and hydration during end-of-life

Principal Investigator:  Dr. A. Rapoport, MD, FRCPC, MHSc; co-applicants: Dr. C. Newman, MD, FRCPC; Ms. M. Rugg, RN, MN & Dr. R. Steele, RN, PhD

Feasibility pilot test study of group therapy for bereaved siblings

Investigators & Staff: M. Barrera, F. Schulte, K. Hancock, E. Atenafu, & L. Sung

Sibling and parent bereavement from childhood cancer

Investigators & Staff: C. Gerhardt & M. Barrera

A multi-dimensional strategy for knowledge translation in pediatric palliative care research

Principal applicant Dr. H. Siden, MD, MHSc; co-applicants Dr. S. Cadell, MSW, PhD; Dr. B. Davies, RN, PhD, FAAN; Dr. R. Steele, RN, PhD; and Dr. L. Straatman, MD, FRCPC
To initiate a four-part strategy to support the translation of this team’s research results and the promotion of best practices to clinicians, researchers, and policy makers.

Development and testing of an instrument to measure parents’ perspectives of the quality of children’s end-of-life care

Principal Investigator Ms. K. Widger, RN, PhD(c), CHPCN(C); co-investigators Dr. A Tourangeau, RN, PhD; Dr. R. Steele, RN, PhD; and Dr. D. Streiner, PhD
The purpose of the proposed study is to develop and test an instrument to measure the quality of end-of-life care provided to families before, at the time of, and following the death of a child, from the perspective of parents.

Charting the territory: Determining and documenting trajectories for families where a child has a life-threatening condition

Co-Principal Investigators Dr. H. Siden, Dr. R. Steele & Dr. A. Rapoport; co-applicants Dr. R. Brant, Dr. S. Cadell, Dr. B. Davies, Dr. L. Straatman, & G. Andrews

Stress and Growth Over Time: Caregiving and Bereaved Parents of Children with Life-Limiting Illnesses

Investigators and Staff: Susan Cadell, Betty Davies, David Hemsworth, Stephen Liben, Hal Siden, Rose Steele, Lynn Straatman &  Kathleen Wilson

Careful Transitions:  Developing an Integrated Service Delivery Model for Paediatric Palliative Care

Investigators & Staff: Laura Beaune, David Nicholas, Maru Barrera, Eric Bouffet, Christine Newman, Maria Rugg, Margot Jeffrey, Deborah Adams, Andrea Wheat, Dipti Purbhoo, Kim Widger, Frank Wagner, Anu Chahauver

Does an integrated and coordinated model of care help improve the care of children with life limiting illnesses during palliation and end-of-life?  Through this research we will test the feasibility of a coordinated and integrated system model of care that supports a dying child and his/her family when moving between home, hospital or hospice.

Hope: The complex journey of parents of children with cancer

Investigators & Staff: David Nicholas, Maru Barrera, Eric Bouffet, Ahmed Naqvi, Norma D’Agostino, Anne Marie Maloney, Jocelyne Volpe, Laura Beaune, Karen Ghelani, Maria Rugg, Deborah Berlin-Romalis, Patty Martinez, Karen Fung, Sonia Lucchetta, Wendy Shama, Karen Sappleton, Jenny Shaheed

This study is part of a program of research aimed at improving the quality of psychosocial care for young people who have been recently diagnosed with cancer and their parents.  It focuses on parents’ perceptions of hope, the role that hope plays in parents’ choices on behalf of their child as well as the transformations of hope over the course of their child’s treatment and changing health.  This innovative study will provide a vital foundation for future research and quality care for children with cancer, by providing a greater understanding of how parents of children with cancer perceive hope, and the role that hope plays in parents’ decisions on behalf of their child

Web reporting: the complex journey of parents of children with cancer

Principle Investigators: Nicholas, D & Barrera, M.; Co- investigators: D’Agostino, N. Maloney, A.M. Volpe, J.
B.R.A.I.N.Child, The Hospital for Sick Children Foundation
$24,000

Palliative Chemotherapy versus Supportive Care alone for End of Life Care in Pediatric Cancer: Measuring Parents’ and Health Care Professionals’ Preferences.

Investigators & Staff: Lillian Sung, Hilary Llewellyn-Thomas, Eric Bouffet, Mark L. Greenberg, Sylvain Baruchel, Janet Gammon, Michael Capra, Jocelyne Volpe, Maru Barrera, Pamela Hinds, Deborah Tomlinson

Decision-making at end-of-life is extremely difficult for most families and healthcare professionals. For children with cancer who die, we know very little about how parents make decisions, what factors influence these decisions and whether we can make this process easier for families. Improvement of shared decision-making and provision of decision support for families is critically important, as this will not only improve the quality of, and satisfaction with care for families, but may also facilitate the bereavement process.
We plan to describe preferences for chemotherapy relative to supportive care alone for children receiving palliative care.

Transitions in pediatric palliative and end of life care

Investigators and Staff: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman, Carly Fleming

The purpose of this internally funded pilot study was to describe the experiences of children and families as they transitioned into the Canuck Place Hospice program.

The efficacy of sublingually delivered ophthalmic atropine for the control of oral secretions in children

Investigators & Staff: Adam Rapoport, Christine Newman, Jeremy Friedman

Does sublingually delivered ophthalmic atropine solution decrease oral secretions in children?  This study will evaluate this through a series of N-of-1 double-blind randomized-controlled trials.  Furthermore, as the use of ophthalmic atropine sublingually is off-label, this study will attempt to draw conclusions regarding the optimal dosing of sublingual atropine in children and comment on its adverse effects.