Measuring the Quality of Children's End-Of-Life Care: Summary Of Research Project by Kim Widger

A child’s death has a widespread and long-lasting impact on parents, siblings, extended family, the community and those who care for the child. Therefore it is important that the care be of the highest quality.

In this research we are developing and testing a survey which asks bereaved parents to report on various aspects of care provided to their child and family before, at the time of, and following the death of their child. Through a review of existing research with parents we have identified care needed in five areas by parents from health professionals in order to have high quality care. The areas are: connect with families, involve parents, alleviate suffering, share information, and provide bereavement care. The research has three phases. In Phase I will have focus groups with parents. I will ask parents what they believe is important to quality end-of-life care for children and their families. Phase 2 will involve creating the survey questions about quality care. The questions will be based on what parents said was important during the focus groups. When all the questions are created, we will ask health professionals and parents to review the questions to make sure they are clear and easy to understand. We will also ask if the questions seem to be about quality care and if anything is missing. Between 5 and 10 parents will take part in Phase 2 of the study. Phase 3 of the study will involve about 100 mothers. These mothers will answer all of the questions so we can learn about the quality of care that they received. We will also see how well the questions work to measure the quality of children’s end-of-life care. Part of the study will also look at the best way to ask parents about the care they received and to make sure that these type of questions do not cause a burden to parents.

The survey developed in this study will provide a way for health professionals, health systems, and policy makers to improve care provided to families facing the death of a child. My hope is that once the survey is developed and is shown to work well to measure the quality of care, it will be used in hospitals across Canada to give bereaved parents the chance to give feedback about all of the good and not so good things they experienced so health professionals are always listening to parents and working to give the highest quality care to families.