We have checked in with the families and individuals in our first study about every 2 years. In the first 5 phases, we worked with families in their homes. Starting with phase 6, we sent out questionnaires to the young adults only. We are now in our 8th phase of data collection! We have been so lucky to work with our participants as they have gone through childhood, adolescence, and young adulthood!
To find out more about our preliminary study, click here!
Status of Our Current Study: End of Phase 5, Start of Phase 6!
We try to check in with families every 2 years. Here's where we are right now:
Phase 1 (completed in 2010): participants were between the ages of 8 and 15.
Phase 2 (completed in 2013): participants were between the ages of 10 and 17.
Phase 3 (completed in 2015): participants were between the ages of 12 and 19. For our participants over age 18, we worked with the young adult only (friends and parents are no longer involved).
Phase 4 (completed in 2017): participants were between the ages of 14 and 21. Again, for our participants over age 18, we worked with the young adult only (friends and parents are no longer involved).
We are now at the end of Phase 5, and the beginning of Phase 6! In Phase 5, participants are between the ages of 16 - 23, and in Phase 6, participants are between the ages of 18-25. Again, for our participants over age 18, we work with the young adult only (friends and parents are no longer involved).
Why do a second study? How is our current study different from our preliminary study?
We get the chance to work with a whole new set of individuals with spina bifida and their families! This allows us to see if our findings from the preliminary study can also be found in on a different set of individuals and their families. In research, we call this "replication of findings."
We have already learned a lot about the differences between youth with spina bifida and their families compared to typically developing youth and their families. We want to learn even more about children, teenagers, and young adults! To do this, we are focusing only on individuals with spina bifida. This has let us work with more youth with spina bifida than we could before!
Since starting our first study, we have learned more about the unique ways the brain works in individuals with spina bifida. In the current study, we learn more about the way the brain works (called "neuropsychological function") by doing several tests with participants.
Because spina bifida is more common in Latino families, we have tried to work with more of these families in our study. This will help to make sure that our findings represent what is really happening in the spina bifida community.
We have really become interested in the social skills and friendships of youth with spina bifida. Besides including more questionnaires about these topics, we also ask the adolescents with spina bifida to invite a friend to help us in our research! Our friendship pairs are videotaped playing games and completing small discussion tasks, are interviewed about their own friendships, and answer questionnaires for us.
What is a typical home visit like?
Home Visits with Adolescents
Our research assistants (RAs) meet at Loyola to get all of our gear. They drive to the family's home, which can take up to 7 hours! Although most of our visits are in the Chicago area, we work with families in Western Illinois, Indiana, Ohio, Michigan, and Minnesota!
Once at the family's house, RAs review information about the study and confidentiality policies with the family (the "consent process"). The family has the chance to agree to participate in the study and ask questions.
The adolescent and his or her parent(s) are filmed while playing games and engaging in discussions together.
Parent(s) answer questions about their children's future, social relationships, academics, independence, and health into our audiorecorders.
The adolescent completes several different tests that help us to learn more about how his or her brain works.
The adolescent and a friend are also filmed playing games and discussing various topics. We hear a lot of laughing and silliness during this part!
Both adolescents are interviewed by RAs about their friendships.
The adolescent, parent(s), and friend complete questionnaire packets. There are a lot of questions to answer, but this helps us to learn as much as we can!
RAs gather materials, thank families, and head back to Loyola. Once in the CHATS offices, RAs unpack and file materials.
Home Visits with Young Adults
Once the adolescents in our study turn 18 years old, the home visit changes.
RAs work with the young adult only - no family or friends participate on this visit.
An RA interviews the young adult about his or her current independent living skills, self-care responsibilities, career and educational information, and romantic relationships.
The young adult fills out a packet of questionnaires. We ask different kinds of questions than we did during adolescence because we realize that our participants are growing up!
What do CHATS Staff Like Most About Home Visits?
We love getting to know the families who participate in our study! This includes the friendly dogs, cats, and other pets we get to meet as well!
It is pretty clear that the families we visit are very close. We often notice that kids and their parents and other family members have really tight-knit relationships.
A lot of families point out that they are participating in the study so they can help other families who have kids with spina bifida. It is really cool to see how much they care for others in the community.