'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.