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

Abstract

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.

Plain language summary

This paper reports the first qualitative study among families raising children with fetal alcohol spectrum disorder (FASD) – the constellation of difficulties resulting from impaired physical development and neurodevelopment following prenatal alcohol exposure – in Scotland. Adoptive parents took part in semi-structured interviews and identified a range of challenges associated with raising children with FASD. Four themes were identified: ‘The fight for support’; ‘A life of inequity’; ‘An uncertain future’; and ‘A complex psychological journey’. These themes highlighted the need for improved education about FASD amongst both professionals supporting families, as well as among the wider population. Lack of knowledge among professionals was a source of stress for families, and a lack of knowledge in the general population was posited to impact families’ informal support networks. Parents also identified gaps in service provision both geographically and across important transitions within their children’s lives, particularly as they approached adolescence and entered into adulthood. Adoptive parents also described a complex psychological journey, where the relief of gaining a diagnosis was often tempered by a loss of support. Adoptive parents also reported making sacrifices of their own plans and careers to support children.