Treatment adaptation and affecting factors in hemophilic youth with 12-18 age inhibitor

Treatment Adaptation and Affecting Factors in Hemophilic Youth with 12-18 Age Inhibitor Objective: The aim of this study was to investigate the conditions affecting treatment compliance in the hemophilia group with 12-18 age inhibitor. Method: This research was carried out in the phenomenology pattern which is one of the qualitative research methods. The sample of the study consisted of 10 participants diagnosed as inhibitor (+) hemophilia between 12-18 years of age in Ege University Faculty of Medicine Pediatric Hospital Hematology Polyclinic. The research data were collected through an in-depth interview with the individual introductory form and semi-structured questions prepared by the researcher. Interviews were recorded and then written out. The data were encoded in itself, themes and sub-themes were defined and analyzed using content analysis.The data analysis program of MAXQDA Analytics pro 2018 (Release 18.1.0) was used for the analysis of the data. Results: The results of the study were collected in five main themes "Application of Factor in Inhibitor", "Situations Making Obstacle in Factor Application in Inhibitor", "Situations Supporting Factor Application in Inhibitor", "Be Hempohilia with Inhibitor" and "Health Professionals". In the first theme, it was determined that the hemophilic youth with inhibitor did not regularly apply their treatment, although they knew the self-infusion and did not perform their treatment themselves. It was determined that the participants were aware of the hemophilia diary, but did not use it effectively and regularly. Participants were able to compensate for their treatment by applying them during the day or the next day when they skipped the practice, while another participant backed up the prophylactic dose to use it in case of bleeding, not the planned treatment time.In the second theme, vascular access problems faced by the participants, having negative thoughts about treatment, time-consuming treatment, no bleeding symptoms and difficulties of 12-18 years of age have made the compliance with treatment difficult. In the third theme, it was found that the participants had noticed the benefits of prophylaxis treatment, fear of bleeding, family support and good communication with health professionals supported the compliance with the treatment. In the fourth theme, the inhibitor (+) state restricted the sports activities. In addition, the fact that having a diagnosis of hemophilia influenced the choice of future profession was also seen. In the fifth theme, it was found that health professionals were expected to give self-infusion training, to be informed more about the course of their illness and to find a permanent treatment. Conclusion: It has been observed that the pediatric nurse will contribute to the treatment to implement examples of supportive, encouraging and motivating interventions to individualized care practices especially directed patients with hemophilia with inhibitor of 12-18 years of age. Providing emotional, mental and socially supported nursing care with a more effective treatment to the young and family receiving hemophilia treatment will increase treatment compliance. Keywords: Hemophilia; Inhibitor; Adherence to treatment; Young; Phenomenological study