“Taking part in the project has really changed our experience as a family” Investigating parents’ experience of participation in a study to screen for Fetal Alcohol Spectrum Disorder.

Background Screening children for developmental disorders presents unique ethical and methodological challenges, particularly with disorders associated with high levels of shame and stigma. Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental condition resulting from prenatal alcohol exposure. The potential distress caused by informing parents that their child may have FASD has been cited as a significant barrier to conducting such studies. However, limited research has investigated the impact of screening for FASD on parents and children. Aims This exploratory study aimed to examine the experiences of a small sample of parents participating in an active case ascertainment prevalence study screening for FASD in Greater Manchester, UK (ADD-GM study). Methods Interviews were conducted with six parents, whose children aged 8 - 10 years, underwent screening (including three cases of FASD). Thematic analysis was performed on the collected data to identify key themes and patterns. Results The analysis revealed that parents perceived participation in the study as worthwhile, and their children either enjoyed or were indifferent to the process of data collection. Parents of children identified with FASD reported that although the results were surprising, they did not find the experience overly distressing. Conclusion The findings suggest that parents generally view participation positively and perceive limited negative impact. These insights contribute to a better understanding of the challenges and benefits associated with screening children for FASD.