Being a parent of a child diagnosed with hemophilia:A qualitative study

Objective: This study was conducted to deeply investigate whatparents having children with hemophiliaexperience during diagnosis, treatment, schooling, and puberty, how they are affected by their children's health problem andwhat changes they have to make in their lifestyles. Method: In this study, the phenomenological research method, a type of descriptive qualitative research, was used to examine the life experiences of parents who have children diagnosed with hemophilia and to determine the effects of their children's health problem on their lives. Of the parents of the children diagnosed with hemophilia and registered in the Ege University Medical Faculty Children's Hospital Hematology Polyclinic,both parents of 3 children and a mother of one childwho agreed to participate in the study were interviewed. The study data were collected using the semi-structured interview form and the questionnaire questioning sociodemographic and disease characteristics (such as the duration of diagnosis, hospitalization experience in the last year, the number of hospitalizations, treatment outcome / factor level). In the study, the in-depth interview method was used. During the interviews, the responses the parents gave regarding their experiences,feelings and perceptionswere audio-recorded. Afterthe content of their responses were analyzed, the data obtained wereencoded using the MAXQDA Analytics Pro-18 qualitative analysis program. Results: The study was conducted by interviewingboth parents of 3 children and the mother of 1 child. Of the children, three had severe hemophilia A (factor level <1%) and one had mild hemophilia A (factor level <15%). While one of the cases had genetic transmission, the other threehad gene mutation. The diagnostic and medical treatment process of hemophilia, a chronic disease, experiences of children, parents, siblings and other peersin this process and health care services received by the patients were the main findings of the study. In the interviews, it was observed that parents felt lonely in the acceptance process of the disease after the diagnosis was made, that they obtainedinformation about the disease from physicians and that theircompliance to treatmentwas improved after they wereinformed. The parents'knowledge of hemophilia was mostly on bleedings / factor, future treatment improvements especially genetic therapy, self-infusion.In addition, their views on the spiritual approach, home accidents, school life and maintenance of life safely were determined in detail. It was also determined that their support needs on these issues varied. Conclusion: It was observed that the parents of children with hemophilia were psychologically and socially affected during the diagnosis and treatment process. Since the child with hemophilia is at risk for bleeding at any moment and thus the parents lead a disease-focused lifestyle due to "fear of bleeding", this situation affectstheir life from all aspects (physical, emotional, social, and economic). Therefore, considering their positive and negative experiences,it wasdetermined that the families needed support in the points where they were inadequate to manage the disease. Improvement of professional care policies and presentations of these policies that will provide support in these areas of need will also strengthen childrenwith hemophilia and their parents. Key words: Children with hemophilia, Hemophilia nurse, Experiences of parents, Qualitative research.