RT Journal Article
T1 A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca.
A1 Ramos Petersen, Laura
A1 Rodríguez-Sánchez, Agustín
A1 Cortés-Martín, Jonathan
A1 Reinoso-Cobo, Andrés
A1 Sánchez García, Juan Carlos
A1 Rodríguez-Blanque, Raquel
A1 Coca, Juan R.
K1 Hemofilia - Pacientes
AB Hemophilia is a chronic, congenital/hereditary and X-linked disease, characterized by aninsufficiency of factors VIII or IX, which are necessary for blood clotting. Those affected by hemophiliaoften suffer from particular psychosocial problems, both in the acceptance, coping, treatment and selfmanagementof their disease and in their family and social relationships, which are often mediated bythese circumstances. The aim of this study was to explore the experiences of people with hemophiliaor 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 ofHemophilia and Osorio-Guzmán et al. as a guide, as well as a literature review of qualitative workon hemophilia. Data were analyzed using a six-step thematic analysis. A total of 34 interviews werethematically analyzed. The results showed that three key themes emerged from the data: (1) thedaily 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 theirlives (work, family, leisure and personal environment). The main conclusion is that hemophilia has anegative impact on the daily lives of patients, families and caregivers.
PB MDPI
YR 2023
FD 2023-08-21
LK https://hdl.handle.net/10630/30557
UL https://hdl.handle.net/10630/30557
LA eng
NO 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
NO Part of this paper has received support from the Ministry of Science, Innovation and Universities (‘El sistema de salud español ante las enfermedades raras (1950–2019): profesionales y pacientes,investigación y asistencia’ PID2021-126019NB-I00) Proyectos de Generación de Conocimiento 2021.Non-Oriented Research Type B.We thank the Colegio Oficial de Enfermería de Granada (CODEGRA) for theirhelp in the research support program.
NO Partial funding for open access charge: Universidad de Málaga
DS RIUMA. Repositorio Institucional de la Universidad de Málaga
RD 19 ene 2026