Lived experience of fetal alcohol spectrum disorder: A qualitative scoping review

Aim: To explore the lived experiences of individuals with fetal alcohol spectrum disorder (FASD), their caregivers, and professionals working with individuals with FASD.

Method: We conducted a scoping review using qualitative methods to explore what it is like to live with FASD from the perspective of those living with FASD, their caregivers, and stakeholders experienced in working with individuals with FASD. We searched electronic databases and grey literature for research published between 2005 and 2022.

Results: The 47 studies included in this scoping review show that FASD affects people's lives on a daily basis. Individuals with FASD are aware of their disability and its effects. Caregivers face daily challenges raising children with FASD and are often left unsupported by professionals. Professionals are unprepared and frustrated when supporting someone with FASD.

Interpretation: FASD affects individuals, caregivers, and families on a daily basis; and they require improved support and funding.

What this paper adds: Professionals are overwhelmed and frustrated because of a lack of training and organizational support with regard to fetal alcohol spectrum disorder (FASD). Extends on previous reviews with the inclusion of grey literature and professionals. FASD is a highly stigmatized disorder that affects individuals with FASD, and their caregivers and families, on a daily basis. Research is needed exploring the experiences of adults living with FASD and their siblings. There is a lack of research involving indigenous populations and their experience with FASD.