Problems faced by people with hemophilia aged 18-35 years in social life: a qualitative study.

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Tác giả: Zeynep Meva Altaş, Mahmut Batman, Mehmet Mert Baykara, Selin Davun, Ahmet Celal Demirel, Beyza Doğan, Seyhan Hıdıroğlu, Melda Karavuş, Sarp Kayauman, Nabila Salehin

Ngôn ngữ: eng

Ký hiệu phân loại:

Thông tin xuất bản: England : Expert review of hematology , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 180146

BACKGROUND: The aim of this qualitative study is todetermine 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, 13individuals aged 18-35 years with hemophilia were reached with snowballsampling and online interviews with them. Participants were asked about theirsociodemographic characteristics and the problems they encountered in variousfields related to hemophilia using a semi-structured question guide withopen-ended questions. Thematic content analysis was carried out. RESULTS: Most participants were diagnosed withhemophilia in early childhood and have maintained knowledge of the conditionsince then. Hemophilia-related complications often resulted in significanteducational delays, with two participants unable to complete formal schooling.Experiences of stigmatization in school were commonly reported. Some familiesfaced migration or job changes due to the financial burden of hemophilia. Whilethe majority viewed current healthcare services in Türkiye as sufficient,access issues in rural areas were noted. Nearly all participants belonged to ahemophilia-related non-governmental organization, which they felt had greatlyenhanced their quality of life. CONCLUSIONS: To improve thesocial well-being of people with hemophilia, awareness campaigns to reducestigma and foster a more supportive social environment are needed.
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