Cultural conceptions on hemophilia in parents who are members of a civil association in Mexico

Abstract

Introduction: Hemophilia is a chronic condition and there are activities that, depending on the person, can improve the patient's health. To be able to understand these actions it is needed an approach to the cultural conceptions that families have about hemophilia.

Objectives: Describe the cultural conceptions regarding hemophilia that parents have with children who suffer from this disease and reside in the Mexican Republic.

Methods: A qualitative study of cognitive anthropology research was conducted. Two structured interviews were applied to 64 parents, who belonged to the civil association. Hemophilia meanings were sought from the use of five words and then it was identified if existed or not consensus among participants.

Results: The main categories that derived from cultural dimensions were: "consequences derived from the condition" and "how it is lived". The main cultural dimensions were “responsibility" and "living". Within "responsibility" it was found what the treatment implies, what the person must overcome, the unwanted and what the person must learn. In the "living" dimension were family affectation, repercussions, fears, reality and knowledge.

Conclusions: Although informants live in different parts of the country, they have a high cultural consensus on hemophilia; their perception generally shows an adverse picture for their children in the Mexican context in which they find themselves. They feel shared responsibility with the health personnel, which should be leveraged so that both doctors and people with the condition and their families learn about treatment limitations, fears, life experiences and timely drugs that can be taken as alternatives to improve the care and adherence to treatment.