Development and Testing of an Instrument to Measure Parents’ Perspectives of the Quality of Children’s End-of-Life Care
This study was completed as part of my PhD. In this study, we developed and tested an instrument or survey to measure parents’ perspectives on the quality of care provided to families before, at the time of, and following the death of a child. Both parents and health professionals helped develop the questions. We then tested the instrument with bereaved mothers to see how well it worked to measure care quality.
We found 10 areas or domains that were most important for high quality end-of-life care for children: Connect with Families, Involve Parents, Share Information with Parents, Share Information among Health Professionals, Support Parents, Support the Child, Support Siblings, Provide Care at Death, Provide Bereavement Follow-up, and Structures of Care. Details about these domains can be found in the 45 minute presentation (linked below): Connections: The Key to High Quality End-of-Life Care for Children and their Families. The instrument worked well to measure quality of care in these areas, however it still needs some work – mostly to make it shorter. We will make the instrument available on this website in the coming weeks!
Widger, K., Tourangeau, A., Steele, R., & Streiner, D. (2015). Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care. BMC Palliative Care, 14, 1. DOI: 10.1186/1472-684X-14-1
Widger, K. (2012). Development and testing of an instrument to measure the quality of children’s end-of-life care from the parents’ perspective. University of Toronto Libraries. Available at: http://hdl.handle.net/1807/32851.
Widger, K., Steele, R., Oberle, K. & Davies, B. (2009). Exploring the supportive care model as a framework for pediatric palliative care. Journal of Hospice & Palliative Nursing. 11(4), 209-216. doi: 10.1097/NJH.0b013e3181aada87
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Kimberley Widger Ann Tourangeau (PhD Supervisor) Rose Steele (PhD Committee Member) David Streiner (PhD Committee Members)
The Innovation Fund in Children’s Palliative Care Research, The Hospital for Sick Children (2 years, $4874)
During my PhD I was also supported by a Canadian Institutes for Health Research Fellowship, the Canadian Child Health Clinician Scientist Program Career Enhancement Program, and the Canadian Nurses Foundation