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Mental Health Aspects of Developmental Disabilities April/May/June 2005 Vol. 8, No. 2 Quality of Life and Psychosocial Profile Among Young Women With Fetal Alcohol Spectrum Disorders Therese Grant, Ph.D., Janet Huggins, Ph.D., 1 1 Paul Connor, Ph.D. & Ann Streissguth, Ph.D. 1 1 Department of Psychiatry and Behavioral Sciences, Fetal Alcohol and Drug Unit, 1 University of Washington School of Medicine F etal alcohol syndrome (FAS) and alcohol-related neurodevelopmental disorders (ARND) are permanent birth defects caused by maternal alcohol use during pregnancy; FAS is a leading preventable cause of intellectual disability. Depending on dose, timing, 1 frequency, and genetic susceptibility, prenatal alcohol exposure can result in a range of neurodevelopmental disorders including FAS and ARND that have been termed fetal alcohol spectrum disorders (FASD). 21,27 The neuropsychological deficits associated with prenatal alcohol exposure affect multiple areas of functioning. Even if an affected 17 individual has intellectual abilities in the normal range, other problems in adaptive behavior, attention, memory, abstract thinking, and executive functioning (i.e., cognitive abilities that include sequencing of information and behavior, cognitive flexibility, response inhibition, planning, and organizing behavior) may seriously impede his or her ability to work, to live independently, and to maintain social relationships. 26 Clinical reports indicate that a poor quality of life is a grim reality for most adults with FASD because their broad spectrum neurobehavioral deficits continue to impair functioning across the lifespan, and because access to services that might ameliorate their circumstances is either inconsistent or uncoordinated. An individual’s self-report of quality of life is important in order for clinicians to understand the impact of a medical or psychiatric condition. However, 16,22,24,32 to our knowledge, quality of life has not been formally assessed and reported in this population. In 1999, the Parent-Child Assistance Program (PCAP) at the University of Washington expanded its evidence-based and widely replicated intervention model in order to enroll a sample of women diagnosed with FAS or another fetal alcohol-related diagnosis. The PCAP 3-year home visitation model was designed originally in 1991 to work with high-risk alcohol and drug-abusing pregnant women, with the primary goal of preventing future births of children prenatally exposed to alcohol and drugs. As part of a 7,10,11 research unit that has conducted FASD research since the 1970’s, we hypothesized that our combined expertise on FASD and on interventions with high-risk women could be applied to the FASD population for whom interventions had not been developed, by enrolling some young women with FASD into the existing PCAP. In 2001 we began the 12-month pilot study reported here with the aim of assessing and better understanding quality of life and psychosocial problems among these women. Elsewhere we have reported specific strategies developed to increase connection to community services and improve quality of services delivered.12 The purpose of this report is to: • Describe demographic and psychosocial characteristics of the FASD group enrolled in this pilot study; Prenatal alcohol exposure can result in a range of neurodevelopmental disorders termed fetal alcohol spectrum disorders (FASD). Clinical reports indicate ...





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