Abstract
BackgroundFetal alcohol spectrum disorders (FASD) affect approximately 2% to 5% of the US population. However, most families are unable to access FASD-informed interventions. Barriers to care include the lack of a knowledgeable and skilled workforce and family-level barriers such as limited financial resources, inability to access childcare, and stigma. As a result, families often try peer-to-peer and self-help support strategies. However, they often take these strategies from disparate sources, which have quite variable intervention quality and empirical support.ObjectiveThis study aimed to initiate systematic development and evaluation of a mobile health intervention (app) for caregivers raising children with FASD. Focus groups were conducted to elicit participant perspectives on app design and functionalities to inform further app development.MethodsThe app, called FMF Connect, was derived from the scientifically validated Families Moving Forward (FMF) Program, a clinician-delivered behavioral consultation intervention. FMF Connect was intended for caregiver self-delivery and included five main components: (1) Learning Modules, (2) Family Forum, (3) Library, (4) Notebook, and (5) Dashboard. Focus group methods were used to solicit perspectives from diverse families during the early stages of app development. Questions were asked about interface design, relevance of components and content, and perceived barriers and facilitators of use. A total of 25 caregivers participated in 7 focus groups across 5 US cities. Data were analyzed thematically.ResultsFocus group participants were generally enthusiastic about the app interface design and components. Four global positive impression themes emerged, including (1) ease of access, (2) how the app guides and organizes information, (3) connection to other users and information, and (4) ability to share some content with others. Themes arose not only in discussions relating to positive app features but also when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge. Participants identified many positive features about individual app components and functionalities. They also communicated potential barriers to use and raised important concerns and considerations relating to several app components. These included recognizability of the app based on the logo, and the balance of following the planned intervention sequence versus obtaining immediate answers. Also mentioned were privacy and dynamics within the Family Forum.ConclusionsFMF Connect is a promising novel intervention with potential to reach many families in need and reduce significant barriers to care, resulting in a broader public health impact. Study findings will guide further app development both in terms of content and technological advances to optimize intervention effects. FMF Connect app development provides useful directions for other apps aimed at changing parenting practices.
Highlights
BackgroundFetal alcohol spectrum disorders (FASD) affect an estimated 2% to 5% of the US general population [1] and occur at even higher rates in special populations, such as those served by child welfare and juvenile justice or in psychiatric care [2]
Themes arose in discussions relating to positive app features and when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge
This study presents data from an initial evaluation of the design and planned functionalities of a novel Mobile health (mHealth) intervention for caregivers raising children with FASD, called Families Moving Forward (FMF) Connect
Summary
Fetal alcohol spectrum disorders (FASD) affect an estimated 2% to 5% of the US general population [1] and occur at even higher rates in special populations, such as those served by child welfare and juvenile justice or in psychiatric care [2]. There are very few providers in the community who regularly diagnose this condition or provide FASD-informed care. This problem is especially the case in rural or underserved communities. Families often try peer-to-peer and self-help support strategies. They often take these strategies from disparate sources, which have quite variable intervention quality and empirical support
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