A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia

• Introduction: Haemophilia is a chronic illness that affects the whole family as the child’s reactions to the illness occur in interaction with the parents. Limited research has been conducted on how fathers of children with haemophilia experience their life situation. Aim: The aim of this study was to describe the lived experience of being a father to a child with severe haemophilia. Method: Individual, qualitative interviews were conducted with 14 fathers of 17 children with severe Haemophilia A. Data were analysed by means of a phenomenological hermeneutic method, including na€ıve reading, structural analysis and comprehensive interpretation. Results: The results revealed that the fathers gradually grew into fatherhood through a process that can be explained in the metaphor, ‘A tortuous road to a capable fatherhood’. The fathers experienced sorrow, powerlessness, concern and loss of a regular fatherhood after the child’s diagnosis. The loss of an envisaged fatherhood emerged as the greatest sorrow of being a father to a child with haemophilia. When home treatment with factor concentrates functioned without the involvement of Health Care Personal (HCP), the fathers’ sense of insufficiency decreased. Conclusion: A sense of being a capable father was associated with a sense of independence and control of one’s life situation. Support from the Haemophilia Treatment Centre (HTC) in the learning process is essential for both parents of a child with severe haemophilia. Awareness of the fathers’ struggle to feel capable is also vital while supporting the family in the first years after diagnosis.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Publication and Content Type

ref (subject category)

art (subject category)