Feeling different: the experience of living with fetal alcohol spectrum disorder.

ABSTRACT

BACKGROUND: In Canada the incidences of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be in 1 in 100 live births caused by prenatal exposure to alcohol, the disorder is the leading cause of developmental and cognitive disabilities among Canadian children and its effects are life lasting. No research has attempted to describe the experience of living with FASD from the perspective of Canadian children. PURPOSE: The main purpose of this study was to describe the children's experience of living with FASD. METHODS: A qualitative method was used to examine the children's experiences. Twenty-two (22) children, aged 6 to 18 years, living in urban and rural communities across Canada participated in an unstructured in-depth interview. Data was analysed using Colaizzi's qualitative method. RESULTS: For all children in this study, living day-to-day with FASD meant feeling different. Within this construct knowing the disability; feeling alone-feeling supported, and overcoming the disability were dominant themes which emerged. CONCLUSION: Implications for practice and research have been described. KEYWORDS Fetal Alcohol Spectrum Disorder, children's experience, qualitative research.