Influencing factors of adherence to prophylaxis in adults with hemophilia based on roy adaptation model

Introduction= Hemophilia which is characterized by deficiency of factor VIII or factor IX is an X linked hemorrhagic disease that affects males clinically. Besides, it is the most common coagulation disorder, following in a life-long time and also treatment would be necessary for the patients. The aim of this descriptive and qualitative study was to assess influencing factors of adherence to prophylaxis in adults with haemophilia based on Roy Adaptation Model. Materials and methods=The sample of the study was taken from study groups on the basis of appropriate case and homogeneous sampling. Between November 2015 and May 2016, 21 patients who underwent prophylaxis treatment from the Ege University Medical Faculty Hospital Internal Medicine Department Hematology Science Adult Hemophilia Outpatient Clinic were enrolled in the study. Ege University Nursing Faculty Ethics Committee has been informed from the hospital where the study was implemented and the informed consent of the participating patients.Respondents were interviewed in depht interview and face to face method. The semi- structured interviews lasted 14-46 min ( 27 min). Interviews were taped recorded and data in the tape was transcripted by interviewer in the same day. Transcripts were checked for accurarcy anonymized and imported in to Nvivo 11 qualitative data survey for management and analysis. Sosciodemographic and disease characteristic such as age, education, type of haemophilia, severe levels, etc. were taken from patients' records. Results=Adaptation Models of Roy Adaptation Models have been created themes for the study.The factors that increase the adaptation for the physiological mode of the Roy Adaptation Model; increase the physical activity, appearance of the factor as a physiological requirement, pain relief, being healthy with prophylaxis, protection of joints. On the other hand, the problems with vascular access reduce the adaptation for the physiological mode. Factors that increase compliance for the physical self-concept mode; increasing the physical activity, bad experiences, self-independence / freedom with prophylaxis, self-infusion and self-confidence. Factors that reduce physical self-mode were time loss, self infusion, self-confidence. Moral, ethical, moral thoughts, expectation, loyalty, acceptance of value / prophylaxis, self-esteem, self-confidence and character traits are reported as increasing the self-concept mode.However prejudice against illness, acceptance of illness, feeling good and character type reduce the self-concept mode. The factors that increase the interdependence mode; support the patients, effective communication and support from the health system. The factors that reduce the interdependence mode; lack of support system, ineffective communication and health system.Being primary role, secondary role (father, partner, professional role) and tertiary roles are identified increasing the role mode. Conclusion= Decreasing factors of adherence were difficulties accessing or getting to a hospital, feeling good, healthworkers' attitude. Increasing factors of adherence were preserving activities, physical function, experiencing bleeding symptoms. Inlight of the results, the adherence efforts should be especially to adults. Relationship with healtworkers is important for adherence treatment.It can be recommended that effective nursing interventions should be implemented to change non-adherence behavior into adherence ones. KeyWords: Hemophilia, Adherence, Prophylaxis, Qualitative study