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

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:

• text mining
• fetal alcohol spectrum disorders
• child
• sleep
• interview