Parents of children with haemophilia--a transforming experience

Area of Science:

• Pediatric Hematology
• Psychosocial Health
• Qualitative Research

Background:

• Modern haemophilia management has improved children's experiences.
• Haemophilia significantly impacts the quality of life for both children and their parents.
• Parental psychosocial well-being is a critical, yet often overlooked, aspect of childhood haemophilia care.

Purpose of the Study:

• To qualitatively explore the multifaceted impact of childhood haemophilia on parents.
• To understand the lived experiences of parents raising children with severe haemophilia.
• To identify key themes influencing parental adaptation and well-being.

Main Methods:

• Qualitative study involving 12 parents of children with severe haemophilia.
• Data collection through semi-structured interviews and focus groups.
• Thematic analysis to identify emergent patterns in parental experiences.

Main Results:

• Four primary themes emerged: initial experiences, managing the condition, engaging with others, and developing mastery.
• Parents' lives are significantly transformed by their child's haemophilia diagnosis.
• Parental responses and adaptation are influenced by the child's condition management and associated difficulties.

Conclusions:

• Parental experiences with childhood haemophilia are profound and transformative.
• Evaluating and understanding parents' perspectives is essential for comprehensive care.
• Further research is needed to fully grasp the long-term impact on parents' lives.