Prevention of Secondary Conditions in Fetal Alcohol Spectrum Disorders: Identification of Systems-Level Barriers

Abstract

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.

Positive Behavioral Interventions and Family Support for Fetal Alcohol Spectrum Disorders

“…In addition, caregivers of children with FASD often experience high levels of stress that differ in magnitude and contributing factors relative to caregivers of children with other disabilities, such as autism [31–34]. Families raising children with FASD also face significant systems-level barriers and often have to assume the role of advocate and service coordinator for their children [35]. …”

“…For example, systematic qualitative research can help inform the development of interventions that will facilitate their uptake and implementation in the community, as was done by Petrenko and colleagues [10,35]. Community-based participatory research (CBPR; [84]), which involves a collaborative partnership between researchers, community members, and organizational representatives in all aspects of the research process, may also be helpful in this regard.…”

“…This information is critical to facilitate systematic dissemination and implementation of evidence-based interventions in the community. One major challenge impacting the uptake of evidence based interventions for FASD is the lack of knowledge about this condition by providers and the community in general [35]. FASD is also under recognized and under diagnosed, which prevents children and adults with this condition getting the appropriate services to prevent secondary conditions [35,90].…”

Fetal Alcohol Spectrum Disorder (FASD): A call on mental health treatment professionals to become informed

“…Afflicting millions of individuals in the United States and many more around the world, Fetal Alcohol Spectrum Disorder (FASD) is a life-course persistent disorder caused by prenatal alcohol exposure [1][2][3][4]. It has been estimated that disorders associated with prenatal alcohol exposure impact up to 5% of the general population [5] with even higher rates being documented among at-risk and criminal justice populations [6][7][8][9].…”

Caregivers of Youth with a Fetal Alcohol Spectrum Disorder: Hopes for Them as Adults

“…Caregivers recognize and appreciate that the needs of their children with FASD are lifelong (Petrenko et al 2014). The challenges faced during childhood and adolescence may change in response to physical maturation, but as they age, others' expectations of them also change.…”