Perspectives of fetal alcohol spectrum disorder diagnoses in children: The experiences of adoptive parents in Scotland

Background Fetal alcohol spectrum disorder (FASD) refers to the constellation of difficulties resulting from impaired physical development and neurodevelopment following alcohol exposure in utero . The UK has the fourth highest rate of prenatal alcohol use worldwide, but the condition remains stigmatised and under-recognised. The parents of children with FASD play a crucial role in informing the development of relevant policy to address these shortfalls. Aims This study sought to examine parents’ experiences of caring and advocating for children with FASD in Scotland, taking an exploratory perspective to give voice to the most salient issues for families. Methods and procedures Six adoptive parents were interviewed and interpretative phenomenological analysis was used to analyse the data. Outcomes and results Four superordinate themes were identified: ‘The fight for support’; ‘A life of inequity’; ‘An uncertain future’; and ‘A complex psychological journey’. These reflect the complexity of the participants’ experiences in navigating a world that is not set up to allow them or their children to thrive. Conclusions and implications Caring for a child with FASD brings significant challenges, often driven by shortcomings in professional knowledge and services. Parents described their futures as highly uncertain, with mental health, social support and financial wellbeing reported as being precarious.