Objective Fetal alcohol spectrum disorders (FASD) impact 2 to 5 percent of the U.S. population and are associated with life-long cognitive and behavioral impairments. Individuals with FASD have high rates of secondary conditions, including mental health problems, school disruptions, and trouble with the law. This study focuses on systems-level barriers that contribute to secondary conditions and interfere with prevention and treatment. Methods Using a phenomenological methodology, semi-structured interviews and focus groups were conducted with parents of children with FASD and service providers. Data were analyzed using a framework approach. Results Participants emphasized the pervasive lack of knowledge of FASD throughout multiple systems. This lack of knowledge contributes to multi-system barriers including delayed diagnosis, unavailability of services, and difficulty qualifying for, implementing, and maintaining services. Conclusions FASD is a major public health problem. Broad system changes using a public health approach are needed to increase awareness and understanding of FASD, improve access to diagnostic and therapeutic services, and create responsive institutional policies to prevent secondary conditions. These changes are essential to improve outcomes for individuals with FASD and their families and facilitate dissemination of empirically supported interventions.

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