{"id":294102,"date":"2018-02-06T16:04:29","date_gmt":"2018-02-06T21:04:29","guid":{"rendered":"http:\/\/www.rochester.edu\/newscenter\/?p=294102"},"modified":"2018-03-27T17:14:01","modified_gmt":"2018-03-27T21:14:01","slug":"building-right-mobile-app-caregivers-children-fasd-294102","status":"publish","type":"post","link":"https:\/\/www.rochester.edu\/newscenter\/building-right-mobile-app-caregivers-children-fasd-294102\/","title":{"rendered":"Building the right mobile app for caregivers of children with FASD"},"content":{"rendered":"

\"logo<\/a>No discipline is an island.<\/p>\n

After years of working with patients and researching fetal alcohol spectrum disorders (FASD), Christie Petrenko<\/a>, a research associate at the University\u2019s Mt. Hope Family Center<\/a>, knew a mobile app might be just the tool she was missing in order to help families and caregivers of children with FASD. She wasn\u2019t sure who might have the right technical expertise but knew fellow psychology researchers had forged connections with colleagues at the Hajim School of Engineering and Applied Sciences.<\/a> Soon, she was introduced to Cristiano Tapparello,<\/a> a research associate in the Department of Electrical and Computer Engineering<\/a>. A team was born.<\/p>\n

This past summer the newly-formed team were awarded a $1.5 million grant from the National Institutes of Health to develop an app that provides health information for self-directed and peer-to-peer interventions for parents and caregivers of children with FASD. The mobile health intervention will provide scientific, evidence-based content and peer-moderated support that\u2019s easily accessible.<\/p>\n

Earlier this month, the duo conducted initial focus group meetings with caregivers to show off their first prototypes and get input from those the app is designed to serve. Top of the list for parents: confidentiality, community, the ability to personalize information to their child, and, of course, ease of use.<\/p>\n

Among other things, parents agreed with the researchers\u2019 idea that the app should contain a caregiver forum to exchange ideas and local resources. The forum needs to feel safe and be moderated so that people can\u2019t make inappropriate comments, they told the researchers. Also, focus group participants said they didn\u2019t want to engage in endless scrolling on their screens to find the pertinent content.<\/p>\n

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DID YOU KNOW?<\/h3>\n

A pilot study, conducted by the University of Rochester\u2019s Mt. Hope Family Center, finds that children with FASD who received a specific multi-component intervention showed lower levels of anxiety and modest, but significant, gains in their ability to control emotions better. The biggest change, however, came in the parents\u2019 understanding of their children\u2019s disabilities and their improved ability to respond to their children\u2019s needs.<\/p>\n