Characterizeing the Cognitive and Motivational Contributions to Health Self-Management of Adolescents and Young Adults with Congenital Neurodevelopmental Conditions

What is the purpose of this study?

The Self-Management Study is part of the Technology Increasing Knowledge: Technology Optimizing Choice Rehabilitation Engineering Research Center (TIKTOC RERC), an interdisciplinary collaboration of clinicians and researchers from the School of Medicine, the College of Engineering, the College of Pharmacy, and the School of Information within the University of Michigan. The over-arching aim of the TIKTOC RERC is to develop and evaluate innovative Rehabilitation Strategies, Techniques and Interventions that can be incorporated into healthcare practice and the lives of individuals with disabilities in order to enhance health, participation, and employment outcomes. The Health Self-Management study is an exploratory study to identify the primary cognitive and motivational variables that impact self-management ability and behaviors among adolescents and young adults with neurodevelopmental disabilities; it will identify important design recommendations for self-management technology so that it is carefully tailored to the individual needs of people who may have some thinking and learning difficulties.

Who can participate in this research project?

Adolescents and young adults with cerebral palsy or spina bifida myelomeningocele between the ages of 13 and 29 years can participate in this study. Their parent or legal guardian must also be present for the child’s test appointment and must be able to complete questionnaire and the informed consent. Participants must currently live with a parent/legal guardian and speak English as their primary language. In addition, all participants must not have a visual or hearing impairment or history of an acquired brain injury (apart from the cause of their cerebral palsy or spina bifida).

What will my child do during the research project?

The participant will complete questionnaires and be interviewed about health behaviors and motivation. They will also complete neuropsychological tests. Some tests are standard paper/pencil/speaking tests and others will be administered on a computer and/or Ipad. Certain tests will require the participant to draw and manipulate objects such as blocks.

While the child is testing, the parent/guardian will complete surveys and questionnaires that ask questions about their child’s medical history, health behaviors, motivation and attention.

How long does the testing take?

Testing will take up to 3 hours for the participant and up to 2 hours for the parent/legal guardian. 
 
Is there compensation for participating in this research study?

Yes – we are offering the participant $50 for participating in this study.  A check will be mailed to the address provided to us. You (your child) can expect to receive the check within 10 to 15 business days from the date of participation.

What will I learn from my child’s participation in this research?

You (your child) may not receive any personal benefits from being in this study. Your (your child's) participation will help us better understand what is needed to help young people with cerebral palsy or spina bifida myelomeningocele learn to better manage their own health needs.

Who should I contact?

To schedule an appointment or for questions call (734) 936-6023.  You may also e-mail this study team at PMR-UMACAL@med.umich.edu 

*This study is funded by the Department of Education/National Institute on Disability and Rehabilitation Research

and has been approved by the University of Michigan’s Institutional Review Board and committee on human subjects’ research (IRB # HUM00055681).