MyStory

Description

The MyStory Project will study the physical health (fatigue and pain), mental health (anxiety and depression), chronic stress, and overall well-being in Adolescents and Young Adults (AYA) with Cerebral Palsy (CP) between the ages of 13-30.

Adolescents and Young Adults (AYA) with Cerebral Palsy (CP) have aspirations similar to those of their peers without CP, but face challenges to physical and mental health, and wellness. In addition to motor impairments, adults with CP may also be affected by chronic pain, fatigue, and depressive symptoms.

Currently, there are many critical gaps in our understanding of the developmental trajectories of AYA with CP. While most brain research in cerebral palsy has primarily focused on changes that may occur in the brain during early development, little is known about the brain changes that may occur as the child with cerebral palsy matures into adolescence and into young adulthood. The overall goal of the project is to examine the brain and behavior correlates of health and well-being in AYA with CP. Through the use of surveys, hair samples, and if you qualify, snapshots of brain activity, we hope to gain an understanding of how your experience with CP impacts your body, and overall well-being.

Hypothesis: We hypothesize that there may be an altered maturation process of the brain (via altered neural activity and/or neurophysiological signals) in AYA with CP, involving chronic stress, that correlates with physical and mental health and overall well-being.

Study Flyer

Engagement/Qualitative study

In response to MyStory participants’ initial feedback, the team augmented the study with a qualitative component. 17 participants engaged in three focus groups to share their stories and help researchers understand rich contexts for living with CP. The preliminary results were shared at the CP Net: Science and Family Day on October 7, 2015 at Holland Bloorview Kids Rehabilitation Centre.