Abstract
Fetal alcohol spectrum disorder (FASD) is a complex neurodevelopmental disability characterized by a range of brain- and body-based difficulties which, when left unsupported, can lead to experiences of significant adversity across the lifespan. Caregivers of individuals with FASD play a critical role in advocating and supporting healthy outcomes for individuals with FASD, and most caregiver research to date has been focused on stressors and challenges. Very few studies have been conducted to systematically capture the full experience of caring for someone with FASD across the lifespan, including perspectives, concerns, as well as strengths and successes of caregivers and their families. Collaborative research with individuals with living experience is essential for understanding needs and supporting healthy outcomes for individuals with FASD and their families, and caregivers are in a unique and important position to provide perspectives and share living expertise. Therefore, the current study was developed collaboratively with caregivers and researchers to capture the many aspects of caregivers' contexts, concerns, needs, and successes in raising individuals with FASD. In this study protocol paper, we describe the rationale, development, design, and anticipated impacts of this research. The goal of this paper is to share information about why and how this study is being done, and potentially guide other teams in developing similar projects to better understand caregivers' experiences, needs, and successes. Documenting and giving voice to the breadth and depth of caregiver experiences will help us to tailor services and supports, develop resources, stimulate knowledge translation based in resilience and protective factors, guide future studies, and inform evidence-based policy initiatives.