Significados de ser portadoras de hemofilia

Abstract

Objective: To analyze the signifi cance built by mothers of people with hemophilia about being a carrier of this disease. Materials and methods: Qualitative study, focused on the symbolic interaction that, through a particular ethnography and the use of semi structured interviews, observations and documental reviews, rescued the point of view of 17 mothers that made part of the Antioquia League of Hemophiliacs, and voluntarily participated and reside in different municipalities of the Antioquia department. Results: The participants recognize themselves as potential people, meaning, not only as transmitters or caregivers of the disease of their children, but also as connoisseurs of their reality, willing to refl ect about their knowledge and incorporate them in favor of the relationship with themselves and everybody else. The most relevant signifi cances are: start living with hemophilia, assume the disease, the family, the care and the parenting, the relation with health services, and walking with something they cannot take off and realizing it. Conclusions: The collective health is the possibility of having a close and more comprehensive encounter with the process of healthdisease-care in human communities, considering the economic, social and cultural conditions in which these are involved. The question about the signifi cance of these mothers unveiled the bond of the individual and the community, as an issue that transcends the biological level of the disease and notes the social construction in which practices, knowledge and feelings combine.

Keywords

• Caregivers
• chronic disease
• hemophilia A
• mothers