The phenomenological examination of Turkish mothers who have hemophilic sons

Abstract

Hemophilia is a coagulation disorder characterized by bleeding episodes that are genetically transmitted from mothers to sons. The disease affects the family psychologically and socially, especially the mothers, who are closely involved in the care of the affected child. We aimed to question the experiences of Turkish mothers with children diagnosed with hemophilia. Method: The study is based on phenomenology, one of the qualitative research designs. We conducted and recorded face-to-face interviews with nine mothers of patients with severe hemophilia A. Each of the semi-structured interviews, in which the interview form consisting of 23 questions was used, lasted approximately 40 minutes. After the recorded data were deciphered, the interviews were analyzed using qualitative analysis methods and presented under six themes. Results: There is long-term anxiety in the daily life of mothers. Fatalism in Islam and the presence of a hemophilic individual in the family were the most important factors in accepting the disease. However, the mothers have the potential to live an uneasy and anxious life. It limits the social life of both the hemophilic son and the mother. Children are placed in a “glass bell” like a lonely fish during early childhood. The glass bell suddenly breaks at the beginning of school, and children face various social-emotional risks. In the adolescent period, children’s social life expands, and mothers’ anxiety about the future of their children begins to increase. Conclusion: As we know, treatment compliance can improve the quality of life in children with hemophilia. To ensure this compliance, knowing and identifying the psychosocial burden of the disease on the mother and finding solutions will increase her child’s compliance with hemophilia treatment and life expectancy.