Juggling between caregiving and self-actualization: Older parents’ lifelong experience of caring for an adult child with developmental disabilities

Abstract

Recently, the number of adults with Developmental Disabilities (DD) who live with their parents has increased. This study aims to explore how parents report retrospectively and interpret their experience in the context of self-actualization in the long-term care of a child with a developmental disability. Four forms of parents’ experiences emerged from the analysis: “This child is my whole world”–Total devotion; “I Can Do Both”—Actualizing personal and familial goals as well as caregiving issues; “It’s a mission, it’s a calling, it’s a full-time job”–Self-actualization through caregiving; and "Disability will not stop me"—Emphasizing self-actualization. While prior studies have created a distinct separation between caregiving and self-actualization, the current study focuses on the complex dynamics of lifelong parental caregiving for a child with DD, illustrating the parents’ ways of actualizing their life goals in the context of caregiving over the years.