ABSTRACT
Objectives: Fetal alcohol spectrum disorders (FASD) affect the health and development of people across the lifespan. Adults with FASD experience significant barriers to care. Accessible and scalable solutions are needed. In partnership with members of the International Adult Leadership Collaborative of FASD Changemakers, an international group of adults with FASD, we developed a mobile health (mHealth) application based on self-determination theory (SDT), called "My Health Coach," to promote self-management and health advocacy. Methods: This project follows an established user-centered design approach to app development and evaluation, allowing for feedback loops promoting iterative change. Research staff and ALC members co-led online focus groups (n = 26) and an online follow-up survey (n = 26) with adults with FASD to elicit feedback on completed design prototypes. Focus group transcriptions and surveys underwent systemic thematic and theoretical framework analysis. Results: Analyses show overall positive impressions of the My Health Coach app. Participants were enthusiastic about the proposed features and tools the app will provide. Discussions and free responses revealed SDT constructs (autonomy, competence, relatedness) are a strong fit with participants' perceived outcomes shared in their evaluation of the prototype. Interesting recommendations were made for additional features that would further promote SDT constructs. Conclusions: This project demonstrates advantages of community-engaged partnerships in FASD research. Adults with FASD have a strong interest in scalable mHealth tools and described the acceptability of our initial design. App features and tools promoted SDT constructs.
ABSTRACT
Fetal alcohol spectrum disorders (FASD) are among the most common neurodevelopmental disorders and substantially impact public health. FASD can affect people of all races and ethnicities; however, there are important racial and ethnic disparities in alcohol-exposed pregnancy prevention, assessment and diagnosis of FASD, and interventions to support individuals with FASD and their families. In this article we use the Dis/Ability Studies and Critical Race Theory (Dis/Crit) framework to structure the exploration of disparities and possible solutions within these three areas (prevention, diagnosis, intervention). Dis/Crit provides a guide to understanding the intersection of dis/ability and race, while framing both as social constructs. Following the Dis/Crit framework, the systemic, historical, and contemporary racism and ableism present in psychological care is further discussed. We aim to elucidate these racial and ethnic disparities within the fields of psychology and neuropsychology through the Dis/Crit framework and provide potential points of action to reduce these disparities.
