Guilt in parents of children diagnosed with hemophilia: A qualitative study

Parents of children with hemophilia often face complex emotional and psychological challenges. The genetic nature of the disease often leads to guilt and responsibility, negatively affecting family dynamics, coping, and well-being. Understanding these experiences is essential for improving psychosocial support and healthcare services.

This study aimed to explore and describe the guilt experiences of parents of children diagnosed with hemophilia within the broader emotional context of the caregiving process.

A descriptive qualitative design was used. Data were collected through in-depth, semi-structured interviews with 13 parents of children followed at a university hospital's Pediatric Hematology Clinic between March and September 2024. Criterion-based purposive sampling was employed, and interviews continued until data saturation. Data were analyzed using content analysis and reported in line with the COREQ checklist.

Four themes emerged: (1) Emotional and Psychological Reactions-uncertainty and anxiety before diagnosis, shock and fear at diagnosis, and adaptive responses; (2) Feelings of Guilt and Responsibility-self-blame linked to genetic factors, criticism of the health system and society, and efforts to alleviate guilt; (3) Changes in Daily Life and Family Dynamics-altered family roles, social restrictions, and concerns about education and the child's future; and (4) Coping and Support Mechanisms-individual strategies and the need for psychological and social support.

Parental guilt, often stemming from the genetic basis of hemophilia, can undermine psychological well-being, strain relationships, and cause social withdrawal. Access to information, peer groups, and professional services can reduce these feelings. Developing psychosocial programs, raising awareness, and ensuring inclusive, empathetic healthcare communication are essential to strengthen family resilience and optimize pediatric hemophilia care.