Preliminary findings from the feasibility trial of families moving forward connect mobile health intervention for caregivers of children with FASD

ABSTRACT

Objectives: Although fetal alcohol spectrum disorders (FASD) affect approximately 2-5% of the US population, most families are unable to access FASD-informed interventions. FMF Connect is a comprehensive mobile Health (mHealth) intervention derived from the scientifically-validated Families Moving Forward (FMF) Program, developed at Seattle Children's Research Institute/University of Washington. FMF Connect has five main components 1) Learning Modules;2) Family Forum;3) Library;4) Notebook;and 5) Dashboard. Methods: A 3-month feasibility trial of the FMF Connect app was conducted with caregivers of children (ages 3-12) with FASD. Data presented are from 63 iOS users enrolled in the trial (conducted February-September 2020);an Android trial is underway. Participants reported on satisfaction using the app, and the impact of COVID-19. Usage metrics were also calculated. Qualitative interviews were completed with a subsample to elicit user experience from both technological and content perspectives. Interviews were coded thematically. Results: Of 63 eligible users, 52 completed baseline surveys, and 41 downloaded the FMF Connect app. Of those caregivers, 29 (71%) completed at least one Learning Module and 6 (14%) completed all 12 modules. 64% of participants indicated the COVID-19 pandemic negatively impacted their ability to use the app. Participants reported high satisfaction with the app, including on Engagement, Information, and Total App Quality scales. 14 caregivers completed interviews. Participants generally had positive experiences with the app and offered constructive feedback to improve user experience. Specifically, caregivers described the content and exercises within the Learning Modules and Library as useful and motivating. However, some caregivers felt the Learning Modules were too long and suggested consolidation. Many struggled with the step-by-step progression and said they would have preferred open access to content. Although Family Forum use was lower than expected, participants valued the idea of connecting with other caregivers who understand. Caregivers suggested adding more notifications and state-specific forums. Caregivers described the Tip of the Day feature as very useful, with a positive emotional impact. The Notebook and Dashboard received limited discussion. Conclusions: Results indicate caregivers were generally satisfied with the FMF Connect app. Iterative feedback from key stakeholders and early development trials are strengths of this project. Content refinement based on feedback is underway.