The Child Neurology Foundation (CNF) invites you to participate in the new Caregiver Perspectives on Transitions Project — to better understand parent/caregiver perspectives in key aspects of transition to adulthood for those living with complex neurologic conditions which often include intellectual and developmental disabilities.
Through online focus groups and surveys, we will explore and highlight medical transitions, as well as transitions related to community-based supports, residential services, and social/recreational supports.
To participate, please consider questions 1-3 below:
- Are you a parent or caregiver of an individual age 12-30 years living with a complex neurologic condition who is not expected to live fully independently in adulthood?
- Are you over the age of 18?
- Do you have access to a computer with ability to connect to either Skype or Google Hangouts? (only needed for online focus groups)
If your answers are ‘yes’ to the items above and you are interested in sharing your perspectives, click here and tell us a little more about yourself and your child. You will be notified via email if you have been selected for a focus group.
The 60-minute online focus groups are conducted by researcher and patient advocate, Christina SanInocencio (founder of the Lennox-Gastaut Syndrome Foundation and sibling of a person living with a complex neurologic condition). Please Note: You will be asked to sign a consent form in order to participate. Names and other identifying information will not be included in study findings or publications.
While limited spots are available for the online focus groups, additional opportunities to participate in Caregiver Perspectives on Transition Project surveys may be available later this year. Regardless of whether you are selected for a focus group, we will gladly keep your name and email on file for such opportunities. We will also include you in our Partners email list, so you can stay up-to-date on all CNF activities.
Seth M. Keller, MD