A qualitative examination of the cognitive and behavioural challenges experienced by children with fetal alcohol spectrum disorder

Abstract

Introduction: At present it is unclear whether there is a consistent behavioural phenotype for children with Fetal Alcohol Spectrum Disorder (FASD) that can support screening efforts. There has been a dearth of qualitative studies exploring the behavioural phenotype from the perspective of caregivers raising children with FASD. The current study explores the cognitive and behavioural difficulties and impairments experienced by children with FASD aged between four and 12 years from the perspective of caregivers.

Methods: Fourteen caregivers of children with FASD participated in telephone interviews. Caregivers were recruited until data saturation occurred. Thematic analysis was undertaken on the transcribed interviews, using NVivo 12.

Results: Three over-arching themes were identified that consisted of subthemes 1) Self-regulation; behavioural, emotional, and attention; 2) Cognitive abilities; academic abilities and learning and memory; and 3) Adaptive functioning; social skills, communication and language skills, motor skills, and sleep concerns. Multiple subthemes were consistently identified across participants. A further two cross-cutting themes were identified; children behaving young for their age, and inconsistency in behaviour and strategies.

Discussion: Despite the lack of a consistent behavioural phenotype for FASD, the findings suggest consistency between caregivers in their reports of the difficulties experienced by children with FASD. The implications for early identification and screening tool development are discussed.

Keywords: Children.; Fetal alcohol spectrum disorder (FASD); Qualitative research.