In this study, we are interviewing siblings of a child who has a life-threatening illness. We are asking them about how they spend time with the ill child, how they are involved and how they would like to be involved with the ill child. We are interviewing each sibling at least twice to look for any changes in their involvement with the ill child over time. If the ill child dies during the study, then we are interviewing the sibling a few months after the death to see how the bond developed before the death may continue afterwards. We will use what the siblings tell us to develop strategies to better support siblings of children with life-threatening illnesses in the future.
Ceilidh Eaton Russell (Principal Investigator), Maru Barrera, Laura Beaune, Susan Cadell, Adam Rapoport, Maria Rugg, Rose Steele, Kimberley Widger
The Innovation Fund in Children’s Palliative Care Research, The Hospital for Sick Children (3 years, $9860)
Eaton Russell, C., Widger, K., Beaune, L., Neville, A., Cadell, S., Steele, R., Rapoport, A., Rugg, M., & Barrera, M. (2017). Sibling voices: A prospective investigation of experiences with a dying child. Death Studies. Early online doi: 10.1080/07481187.2017.1334009
In this study, we looked at the health records of children who died at the Hospital for Sick Children during three time periods: 1998, 2005, and 2012. We focused on children who had an underlying condition that would have normally resulted in admission to a general pediatric ward. We found that over time, the number of children dying in hospital decreased, and a smaller proportion of deaths were occurring in the critical care units. The number of children who had a ‘no CPR’ order prior to death, and the number of children who received care from the palliative care team increased significantly over time.
Amanda Roth, Adam Rapoport, Kimberley Widger, Jeremy Friedman
Roth, A., Rapoport, A., Widger, K., & Friedman, J. (2017). General paediatric inpatient deaths over a 15-year period. Paediatrics and Child Health, 22(2), 80-83. doi: 10.1093/pch/pxx005
In this study, we are looking for the safest and most effective dose of sucrose to reduce pain during a painful procedure for a neonate, and whether or not giving multiple doses of sucrose for the many procedures neonates get while in hospital has any negative impact on the baby. We are also looking at ways to increase health professionals’ use of sucrose for these babies.
Bonnie Stevens (Principal Investigator), Anna Taddio, Denise Harrison, Sharon Gibbins, Marsha Campbell-Yeo, Janet Yamada, Janet Squires, Marilyn Ballantyne, Carole Estabrooks, Carol McNair, Souria Sidani, Anne Synnes, Kimberley Widger, Andrew Willan.
CIHR Operating Grant (5 years, $1,245,000)
In this study we used a new survey to find out nurses’ knowledge, competency, and attitudes about pediatric palliative care at our hospital. We will use the study results to guide delivery of education about pediatric palliative care to nursing staff. We will also examine the survey to see if it is a good measure of pediatric palliative care knowledge, competency, and attitudes that can be used in future research.
Gurjit Sangha, Kimberley Widger, Simone Stenekes, Mary McAllister