Resilience and Thriving Among Youth and Young Adults with Fetal Alcohol Spectrum Disorder

Abstract

This manuscript-based dissertation investigated the processes of resilience and thriving among youth and young adults with Fetal Alcohol Spectrum Disorder (FASD). Following a review of relevant literature, two studies are presented. Study 1 is a quantitative study focused on resilience among youth with FASD. The purpose of Study 1 was to provide a profile of youth- and caregiver-reported resilience resources and the association between these resources and concurrently reported emotional and behavioural functioning. This study included 19 youth with FASD (aged 13 to 23 years) and their caregivers (foster or adoptive parents). Youth with FASD were reported to have comparable relational resilience resources to a typically developing normative reference group, but lower contextual resources compared to the reference group. Caregivers reported youth to have low individual resilience resources, but youth with FASD reported individual resources commensurate with the normative reference group. Early childhood adversity, age, sex, and IQ were not significantly associated with resilience resources. However, earlier age of stable caregiving placement and earlier age at FASD diagnosis were associated with greater caregiver-reported relational and contextual resilience resources. Finally, higher youth- and caregiver-reported individual resources were associated with less mental health symptomology, and higher youth- and caregiver-reported individual and contextual resources were associated with better adaptive functioning behaviour. These findings complement previous research documenting the necessity of ensuring early stable relationships for youth with FASD and permitting timely access to diagnostic services. The results also highlight the need to better understand and strengthen individual and contextual resources. The second study is a qualitative study that explored what it means to thrive with FASD. Five youth and young adults with FASD (aged 16 to 24 years) and seven caregivers provided a rich understanding of how thriving is conceptualized and supported among young people with FASD. Participants described individual qualities that they believed characterized a thriving youth with FASD, as well as qualities of youth environments that supported the development of thriving. Individual markers of thriving with FASD were described by six themes: connection to others, competence and autonomy, meaningful participation, integrated identity, moving toward, and feeling happy. Four additional themes reflected the importance of youth environments in supporting thriving: context matters, affirming youth, understanding youth, and responsive to youth’s individual needs. Overall, thriving with FASD was conceptualized as an individualized, multidimensional, and interactive process. As the first study in this population to explore thriving, this research contributes to our understanding of how to define what it means to be successful with FASD, and how to support people with FASD to do well across the lifespan. The findings of Study 1 and 2 both support and expand upon the existing literature, shedding light on the individual, relational, and contextual strengths of individuals with FASD and how to best support successful trajectories that matter to individuals with FASD and their families. This dissertation concludes with a discussion and integration of key findings from Study 1 and 2, including how this research informs clinical practice and future research.