What If? Incorporating the Voices of Those with Lived Experience to Change the Focus of Fetal Alcohol Spectrum Disorder Research

Abstract

How would our understanding of fetal alcohol spectrum disorder (FASD) be different if FASD research was done in collaboration with individuals with lived experience? We speculate that there would be a better balance between basic science and applied research, focusing on effective interventions and strengths. As members of the Canada FASD Research Network Family Advisory Committee and the Adult FASD Expert Collaboration Team, we provide lived experience perspectives on FASD research and assist in knowledge translation of research results. This article, written by individuals with both in-home and in-body lived experience, in collaboration with researchers, explores the importance and unique contributions of participatory approaches in broadening and shifting the focus of FASD research. We use the term “in-body” to describe the experience of individuals with FASD, and the term “in-home” refers to the experience of those who live with individuals with FASD such as caregivers, siblings, and spouses. The collaboration between researchers and people with lived experience has not only expanded the scope of FASD research, but has also helped to disseminate the information obtained through research into the hands of those who need it most: individuals with FASD and their caregivers, frontline service providers, and FASD policy makers. We believe that participatory research with individuals with lived experience will lead to the development of more effective intervention strategies, encourage strengths and resilience, and facilitate better outcomes and an enhanced feeling of support from the FASD research community for individuals living with FASD. This will, in turn, identify successes and reduce stigmatization for individuals with FASD and their caregivers.