The overall goal of this study is to improve the care provided to children living with a serious illness. Pediatric palliative care is an extra layer of support for these children and their families. It is about making each day as good as it can be – whatever that means to a child and family. (Find more information about pediatric palliative care here).
Many different criteria or indicators are currently used to assess the quality of the care provided. If everyone used the same indicators and only the most important ones, we could compare and consistently report on the quality of care provided by different programs.
In this study, two groups (called ‘panels’) of experts from around the world will help us select the indicators that are most important for measuring the quality of care.
The Family Panel will be made of up of children with a serious illness and their families (e.g., parents, siblings, grandparents, etc.).
The Healthcare Professional (HCP) Panel will be made up of clinicians (e.g., doctors, nurses, social workers etc.), researchers, and administrators (e.g., executive director of a palliative care program) who are involved in palliative care for children.
between 12 and 19 years of age and are currently living with a serious illness (for example, cancer, muscular dystrophy, a serious genetic illness, etc.)
OR a family member of a child 19 years old or younger living with a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)
OR a family member of a child who passed away from a serious illness and you are 12 years of age or older (e.g., parents, siblings, grandparents)
Health Care Professional Panel
Participants will be asked to complete a series of 3 surveys over about an 8-month period. Each survey will take about 30 to 45 minutes to complete. Please watch the video to learn more about the study and the surveys.