Foetal alcohol syndrome, a neurodevelopmental disorder caused by the use of alcohol during pregnancy. FAS Aware UK�
points out that there is are varying estimates of the prevalence of the disorder, but is thought to have a prevalence of around 1 in 1000.
The researchers in this study were interested in finding out about the experience of parents of children with such a diagnosis and point out that when parents learn of a child’s disability, this can be a difficult time, but that this is compounded when there is uncertainty about prognosis and the services that may be available to support them and their child in the future.
As the authors point out, foetal alcohol syndrome is a preventable cause of learning disability but is found to be prevalent in all developing countries.
They focused on understanding of the psychosocial aspects of the impact of this disorder on parents, which they believe is important to ensure well-informed support can be provided for families.
Families shared their experiences of raising a child with foetal alcohol syndrome with the researchers, who used interpretative phenomenological analysis to identify the key themes which included difficulties in understanding the nature of the problems they would face and the difficulty they found in getting appropriate support because of a lack of developed strategies and care pathways.
Raising a child with foetal alcohol syndrome: hearing the parent voice, Whitehurst, T., in British Journal of Learning Disabilities, 40: 187–193.