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

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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.

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Acknowledgments

This research was supported by a Career Development Award (K01AA020486) from the National Institute on Alcohol Abuse and Alcoholism. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute on Alcohol Abuse and Alcoholism or the National Institutes of Health. We appreciate all of the families and providers who made the time in their busy schedules to participate in this study. This research would not have been possible without their valuable insights.

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Authors and Affiliations

  1. Mt. Hope Family Center, University of Rochester, 187 Edinburgh St., Rochester, NY, 14608, USA

    Christie L. M. Petrenko, Naira Tahir & Erin C. Mahoney

  2. Department of Public Health Sciences, University of Rochester School of Medicine and Dentistry, Rochester, NY, USA

    Nancy P. Chin

Authors
  1. Christie L. M. Petrenko
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  2. Naira Tahir
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  3. Erin C. Mahoney
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  4. Nancy P. Chin
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Correspondence to Christie L. M. Petrenko.

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Petrenko, C.L.M., Tahir, N., Mahoney, E.C. et al. Prevention of Secondary Conditions in Fetal Alcohol Spectrum Disorders: Identification of Systems-Level Barriers. Matern Child Health J 18, 1496–1505 (2014). https://doi.org/10.1007/s10995-013-1390-y

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  • DOI: https://doi.org/10.1007/s10995-013-1390-y

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