2026-05-29T22:27:23Zhttps://riuma.uma.es/rest/oai/request

oai:riuma.uma.es:10630/305572026-02-03T11:05:34Zcom_10630_2254col_10630_37953

00925njm 22002777a 4500 dc Ramos Petersen, Laura author Rodríguez-Sánchez, Agustín author Cortés-Martín, Jonathan author Reinoso-Cobo, Andrés author Sánchez García, Juan Carlos author Rodríguez-Blanque, Raquel author Coca, Juan R. author 2023-08-21 Hemophilia is a chronic, congenital/hereditary and X-linked disease, characterized by an insufficiency of factors VIII or IX, which are necessary for blood clotting. Those affected by hemophilia often suffer from particular psychosocial problems, both in the acceptance, coping, treatment and selfmanagement of their disease and in their family and social relationships, which are often mediated by these circumstances. The aim of this study was to explore the experiences of people with hemophilia or their family members, of in a specific region of Spain, regarding the impact of having hemophilia. Structured interviews were conducted and developed, using the studies of the World Federation of Hemophilia and Osorio-Guzmán et al. as a guide, as well as a literature review of qualitative work on hemophilia. Data were analyzed using a six-step thematic analysis. A total of 34 interviews were thematically analyzed. The results showed that three key themes emerged from the data: (1) the daily impact of having hemophilia, (2) uncertainty about the disease, (3) the role of associations and (4) support from institutions. The results make it clear that the disease has a major impact on their lives (work, family, leisure and personal environment). The main conclusion is that hemophilia has a negative impact on the daily lives of patients, families and caregivers. Ramos‐Petersen, L., Rodríguez-Sánchez, J. A., Cortés-Martín, J., Reinoso-Cobo, A., Sánchez-García, J. C., Rodríguez-Blanque, R., & Coca, J. R. (2023). A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca. Journal Of Clinical Medicine, 12(16), 5417. https://doi.org/10.3390/jcm12165417 https://hdl.handle.net/10630/30557 10.3390/jcm12165417 Hemofilia - Pacientes A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca.