title: "They silently live in terror…" why sleep problems and night-time related quality-of-life are missed in children with a fetal alcohol spectrum disorder.
abstract: Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Children's Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs' systemic inattention to the sequelae of SPs and the affected family's wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents' contributions in recognizing SPs and related sequelae in designing appropriate treatment and care.
authors.affiliation: Sleep Research Group, Division of Developmental Paediatrics, Department of Paediatrics, British Columbia Children's Hospital, University of British Columbia, Vancouver, Canada. oipsiroglu@cw.bc.ca
authors.forename: Osman S
authors.initials: OS
authors.lastname: Ipsiroglu
authors.forename: William H
authors.initials: WH
authors.lastname: McKellin
authors.forename: Norma
authors.initials: N
authors.lastname: Carey
authors.forename: Christine
authors.initials: C
authors.lastname: Loock
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D002983:Clinical Competence; D003142:Communication; D003951:Diagnostic Errors; D005260:Female; D063647:Fetal Alcohol Spectrum Disorders / Q000523:psychology*; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D011247:Pregnancy; D011368:Professional-Family Relations; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012893:Sleep Wake Disorders / Q000175:diagnosis* / Q000628:therapy; D013997:Time Factors