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.
