Projects

The FAME Study

Family Assessment and Momentary Evaluation Study

Study Objective

The FAME study aims to examine the self-management process and family interactions in real time using ecological momentary assessment (EMA). Participants include youth (ages 8-15) with spina bifida (SB) who are willing to share how they take care of themselves, along with their families. We are interested in how families manage SB together and what makes this process easier or harder.

What is Ecological Momentary Assessment (EMA)?

Ecological Momentary Assessment (EMA) captures participant interaction and information about behaviors in everyday life by sending notifications that participants can respond to, providing data in real-time!

Why is This Important?

It is important for individuals with SB to learn how to take care of themselves to live full and happy lives. Strategies for managing SB start as early as childhood, as families navigate the condition together. Gaining an understanding of what makes this collaborative process easier or harder is vital in creating helpful tools and resources to share with the SB community!

Interested in Participating?

The FAME study is for youth living with SB and their parents. You may be able to participate in the study if you...

Are an 8 to 15 year-old living with SB or a parent of an 8 to 15 year-old living with SB
Live in the United States
Have a smartphone device
Are willing to share how you and your family manage SB

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