‘‘I am the mother of the kind of child you dread having’’: Experiences of living with chronic sorrow among parents with a disabled child

Authors Edith Raap, Katie Lee Weille, Christine Dedding
Published in Journal of Health Psychology
Publication date 2024
Research groups Wonen en Welzijn
Type Article

Summary

Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.

On this publication contributed

  • Edith Raap | Promovendus| Innovatieve Maatschappelijke Dienstverlening
    Edith Raap
    • PhD candidate
    • Research group: Wonen en Welzijn

Language Engels
Published in Journal of Health Psychology
Key words chronic sorrow, disabled children, interpretative phenomenological analysis, parental experiences, parenthood
Digital Object Identifier 10.1177/13591053241292822
Page range 1-14

Edith Raap

Edith Raap | Promovendus| Innovatieve Maatschappelijke Dienstverlening

Edith Raap

  • PhD candidate
  • Research group: Wonen en Welzijn