Motherhood in the Context of Fragile X Syndrome: Implications for Caregiving, Work, and Romantic-Partner Relationships

This dissertation reports on findings from a qualitative analysis of mothers' accounts of caregiving, work, and couple relationships in the context of having one or more children with special needs, based on semi-structured interview data (n=57) from the Family Adaptation to Fragile X Syndrome Study. Each family involved in the study had at least one child diagnosed with fragile X syndrome, the leading inherited cause of intellectual disability. Additional semi-structured interviews were conducted with a subset of respondents (n=15), and data displaying work and family changes over time were collected.;Findings reveal that one aspect of mothers' experiences was a profound sense of responsibility for advancing their children's development in multiple areas. Findings regarding work-family interplay describe juggling that took place within families and between work and family domains; the concept of articulation work is used to illuminate families' experiences. Employment decisions by families are shown to relate to configurations of resources and demands in both work and family domains, and results show how families make use of strategies to influence fit between work and family domains. Findings also suggest that for some, alignment on parenting is significant in assessments of couple relationships, and that there may be certain complexities associated with aligning on parenting when children have special needs. Together, these findings provide insight into commonalities as well as variation in mothers' perspectives and experiences, and contribute to literature on caregiving, work-family interplay, and romantic-partner relationships.