‘It is up to me because I gave him this life’ How the awareness of being permanently and unconditionally responsible shapes the experience of chronic sorrow in parents of disabled children

Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate emotions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.