Spina Bifida (SB) is a condition where the spinal cord does not fully form, leading to a variety of health complications from birth. People with SB are born with different levels of disability. The condition is lifelong, complex, and highly individualistic. However, any individual with SB can live a long and fulfilling life with the proper support, like every person.

It is important for young people with SB to learn independent living skills (e.g., problem solving, managing money, and household tasks) and condition self-management (e.g., knowing about SB, knowing how to prevent complications, and taking medications). A primary goal supported by the FamilyWISE lab is that young people with SB will become as independent as possible as they grow up.

The FamilyWISE lab is interested in and actively working towards producing research that supports families who experience any chronic condition. We understand that these conditions require continuous, coordinated, patient-centered, and family-oriented care. We are committed to understanding how to support individuals and families in developing self-management and creating helpful tools and resources. Some questions we plan on exploring include...

• How are children developing skills and abilities?

• What family interactions support self-management?

• How are children taking on responsibility for care?