How should we talk with parents of children with cerebral palsy about advance care planning? Join our study and let us know.
This study is about understanding what parents of children with cerebral palsy (CP) think about having advance care planning conversations with their health care providers.
Advance care planning may help families better understand their child’s diagnosis and prognosis and then use that knowledge to think, talk and plan for possible future educational, health and medical issues that may arise.
The purpose of this research is to help us understand what parents think about having advance care planning conversations and to guide clinicians about what should be discussed, when these topics should be raised, and with whom they’d prefer to have these conversations.
Most brain research for people with Cerebral Palsy (CP) focuses on early brain development. More research is needed to understand how the brain changes through the teenage years and into adulthood. The MyStory Project will study physical health (fatigue and pain), mental health (anxiety and depression), chronic stress and overall well-being in adolescents and young adults with CP between the ages of 16-30.
The CP-NET Research Database is an Ontario Brain Institute funded research project. We are collecting information to better understand how many kids are affected by Cerebral Palsy (CP) in different parts of Ontario and what causes CP so that we can improve care and treatments.