In the summer of 2017, Christie Petrenko, an assistant professor and research associate at the University of Rochester’s Mt. Hope Family Center, and Cristiano Tapparello, a research assistant professor in the University’s Department of Electrical and Computer Engineering, teamed up to create the first mobile phone app for caregivers of children with fetal alcohol spectrum disorders (FASD).
Through previous research, Petrenko, who is a recognized expert on a FASD, knew of the many challenges parents and caregivers face: isolation the lack of access to specialized care, limited financial resources, the stigma associated with the disability, and ultimately the caregivers’ quest for readily available and scientifically sound information.
“Many families have little to no access to the kinds of information and parenting strategies that are most helpful in managing the behavior of children with FASD,” Petrenko says. “They also need support from others who understand their experiences.”
Caused by prenatal alcohol exposure, fetal alcohol spectrum disorders affect around 2 to 5 percent of school-aged children in the United States and can result in lifelong developmental, cognitive, and behavioral problems.
Previous studies have pointed out that available online information for parents of children with developmental disabilities may lack in quality, consistency, and readability. In the past two-and-a-half years, the duo has designed, coded, assembled and written the content for their mobile health intervention app, FMF Connect. Its name and content are derived from the scientifically validated Families Moving Forward Program, developed at the Seattle Children’s Research Institute and the University of Washington. The researchers took mock-ups of the app to seven focus groups across the country, and then followed up with two beta tests.
The FMF Connect app allows users to easily access five distinct components:
- Learning Modules: training for caregivers
- Library: fact sheets and resource lists with medically sound advice
- Family Forum: a space for users to share advice and ideas
- Notebook: a place to save personalized content
- Dashboard: includes a customizable avatar that tracks progress through the Learning Modules and charts child behavior.