RT info:eu-repo/semantics/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, Juan Antonio
A1 Cortés Martín, Jonathan
A1 Reinoso Cobo, Andrés
A1 Sánchez García, Juan Carlos
A1 Rodríguez Blanque, Raquel
A1 Romay Coca, Juán
K1 Hemophilia
K1 Hemofília
K1 Hematology
K1 Rare diseases
K1 Enfermedades raras
K1 Equality - Health aspects
K1 Igualdad - Aspectos sanitarios
K1 Health Inequalities
K1 Social action
K1 Salud - Aspecto social
K1 Blood - Diseases
K1 Sangre - Enfermedades
K1 Public health - Spain
K1 Salud pública - España
K1 3205.04 Hematología
K1 32 Ciencias Médicas
K1 3212 Salud Publica
AB 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 self-management 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.
PB MDPI
SN 2077-0383
YR 2023
FD 2023
LK https://uvadoc.uva.es/handle/10324/66610
UL https://uvadoc.uva.es/handle/10324/66610
LA eng
NO Journal of Clinical Medicine, 2023, Vol. 12, Nº. 16, 5417
NO Producción Científica
DS UVaDOC
RD 17-jul-2024