Raising a child with foetal alcohol syndrome: hearing the parent voice

Accessible summary•  Parents have told us what it is like to have a child with a diagnosis of foetal alcohol syndrome. •  Listening to parent views is very important because parents want professionals to understand the support they need. •  People do not know very much about foetal alcohol syndrome. •  It is important to help parents of children with a disability to make sure that the children and families get the help they need. •  Parents told us how they first knew their child had foetal alcohol syndrome, the problems they faced and how difficult they found it to get support.Summary Learning of a child’s disability can be a difficult time for any parent. Sensitive support is critical to ensuring parents understand the nature of the disability, the prognosis and services available to them. However, where the disability is not well understood, where professionals are not well informed and where pathways of care are not available, parents may be left feeling lonely, isolated and unable to cope. Foetal alcohol syndrome is a completely preventable cause of intellectual disability and is prevalent in all developing countries. Whilst research has focused on identification, diagnosis and epidemiology, understanding the psychosocial aspects of the impact of this disorder has been neglected resulting in a paucity of strategies to support parents. Understanding the needs of parents raising a child with foetal alcohol syndrome is central to providing well‐informed support for families. In this study, families shared their experiences of raising a child with foetal alcohol syndrome. These were then analysed using interpretative phenomenological analysis enabling themes to be identified which were core to understanding their journey.