title: Prevention of secondary conditions in fetal alcohol spectrum disorders: identification of systems-level barriers.
abstract: Fetal alcohol spectrum disorders (FASD) impact 2-5% of the US 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. 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. 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. 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.
authors.affiliation: Mt. Hope Family Center, University of Rochester, 187 Edinburgh St., Rochester, NY, 14608, USA, Christie.petrenko@rochester.edu.
authors.forename: Christie L M
authors.initials: CL
authors.lastname: Petrenko
authors.forename: Naira
authors.initials: N
authors.lastname: Tahir
authors.forename: Erin C
authors.initials: EC
authors.lastname: Mahoney
authors.forename: Nancy P
authors.initials: NP
authors.lastname: Chin
mesh_terms: D000328:Adult; D000368:Aged; D002648:Child; D057210:Delayed Diagnosis; D005260:Female; D063647:Fetal Alcohol Spectrum Disorders / Q000175:diagnosis / Q000628:therapy*; D017144:Focus Groups; D006297:Health Services Accessibility / Q000458:organization & administration*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010290:Parents