Challenging sleep-wake behaviors reported in informal, conversational interviews of caregivers of children with fetal alcohol spectrum disorder

Int J Dev Disabil. 2016 Sep 19;64(2):65-74. doi: 10.1080/20473869.2016.1229395.

Abstract

Objective: Sleep complaints are clinically expected in children exposed to alcohol during pregnancy. We aim to reveal patterns of association among sleep-wake behaviors that are challenging in the life of children with fetal alcohol spectrum disorders (FASD). Methods: Through text-mining analyses, we numericized the transcripts of 59 caregiver's informal, conversational interviews. That is, the relative frequencies-of-occurrences of words as well as their semantic specificities (italic) were clustered, categorized, and visualized for patterns. Results: A total of 4008 words were indexed where sleep took the 91st place of most important words. Sleep and wake were however not associatively conversed throughout the interviews. Sleep-related words conversed were: night, nap, apnea, asleep, awake, bed, bedroom, bedtime, mattress, melatonin, overnight, and wake-up. Among some FASD-characteristic words describing the challenges were: huge, alcohol, manage*, stop, adopt, crazy*. The semantic space reflecting these challenges experienced in caring for children with FASD was divided into two axes: child-oriented vs. other-oriented words, and day-related and night-related words. The position of sleep shows that problematic sleep was expressed as a 'family' issue. Clumsy* was interrelated with problematic sleeping and waking. Despite that mostly night was associatively conversed, the association of Routines, Managing, and Planning with sleep underscores the challenges faced. Conclusion: When conversing caregivers of children with FASD seldom interrelate 'sleep' but rather 'night' with FASD-characteristics. Increased sleep awareness combined with educational initiatives regarding sleep are advocated.

Keywords: child; fetal alcohol spectrum disorders; interview; sleep; text mining.