Selin Davun, Zeynep Meva Altaş, Mahmut Batman, Melda Karavuş, Mehmet Mert Baykara, Beyza Doğan, Nabila Salehin, Sarp Kayauman, Ahmet Celal Demirel, Seyhan Hıdıroğlu
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引用次数: 0
Abstract
Background: The aim of this qualitative study is to determine and evaluate the problems faced by people with hemophilia aged 18-35 years in their social lives.
Research design and methods: In this qualitative type research, 13 individuals aged 18-35 years with hemophilia were reached with snowball sampling and online interviews with them. Participants were asked about their sociodemographic characteristics and the problems they encountered in various fields related to hemophilia using a semi-structured question guide with open-ended questions. Thematic content analysis was carried out.
Results: Most participants were diagnosed with hemophilia in early childhood and have maintained knowledge of the condition since then. Hemophilia-related complications often resulted in significant educational delays, with two participants unable to complete formal schooling. Experiences of stigmatization in school were commonly reported. Some families faced migration or job changes due to the financial burden of hemophilia. While the majority viewed current healthcare services in Türkiye as sufficient, access issues in rural areas were noted. Nearly all participants belonged to a hemophilia-related non-governmental organization, which they felt had greatly enhanced their quality of life.
Conclusions: To improve the social well-being of people with hemophilia, awareness campaigns to reduce stigma and foster a more supportive social environment are needed.
期刊介绍：
Advanced molecular research techniques have transformed hematology in recent years. With improved understanding of hematologic diseases, we now have the opportunity to research and evaluate new biological therapies, new drugs and drug combinations, new treatment schedules and novel approaches including stem cell transplantation. We can also expect proteomics, molecular genetics and biomarker research to facilitate new diagnostic approaches and the identification of appropriate therapies. Further advances in our knowledge regarding the formation and function of blood cells and blood-forming tissues should ensue, and it will be a major challenge for hematologists to adopt these new paradigms and develop integrated strategies to define the best possible patient care. Expert Review of Hematology (1747-4086) puts these advances in context and explores how they will translate directly into clinical practice.
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