JMIR Publications

ABSTRACT

Background:

Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental disorders. Yet significant barriers prevent family access to FASD-informed care in the US and other countries. To improve accessibility, a scalable mobile health (mHealth) intervention for caregivers of children with FASD is under development. The app, called FMF Connect, is derived from the Families Moving Forward (FMF) Program, a parenting intervention tailored for FASD. FMF Connect has five components: Learning Modules, Family Forum, Library, Notebook, and Dashboard.

Objective:

During the beta-testing phase of systematic development and evaluation of the FMF Connect intervention, primary research questions examined: (1) technological function of the app, and (2) user evaluation of the intervention, including possible refinement to enhance user experience.

Methods:

Two rounds of beta-testing were conducted. First round (April-May 2019): An iOS prototype was tested with 20 caregivers of children (ages 3-17) with FASD and 17 providers. Second round (November-December 2019): iOS and Android prototypes were tested with 25 caregivers and 1 provider. After each 6-week trial, focus group or individual interviews were completed. Usage analytics and thematic analysis were utilized to answer research questions.

Results:

Across beta-test trials, 38 of 45 caregivers and 17 of 18 providers installed the FMF Connect app. Technological issues were tracked in real time, with updates to address problems and expand app functionalities. On usage days, caregivers averaged 20 minutes using the app; most time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. 48.7% of caregivers posted at least once in the Family Forum. 26 caregivers and 16 providers completed interviews. App evaluations generally did not differ by usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive than negative coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with caregivers’ stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made based on feedback during the first beta-test; these were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, useful in improving user experience.

Conclusions:

Findings demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. Results will guide subsequent app refinement prior to large-scale, randomized testing. This study uses a systematic user-centered design approach to app development and evaluation. The approach used here may illustrate a model that can broadly inform the process of developing mHealth and digital parenting interventions.