In Chile, haemophilia was incorporated into the Explicit Health Guarantees System, which guarantees access to treatment and financial protection for these people. Despite this progress, there are no educational initiatives focused on the needs of patients.

This study, in which MICARE research associate Alejandra Araya participated together with Carolina Zapata, seeks to understand the educational needs of parents of haemophiliac children and adolescents, in order to promote their comprehensive care.

Main results:

The results of the study indicate that the educational needs most frequently expressed by parents include content such as venipuncture training, injury prevention, and pathophysiological aspects of the disease, among others. The preferred methodology was in groups and peer-led workshops in a comfortable and familiar place.

The study concludes that knowledge of educational needs is the starting point for the creation of an educational program to guide the comprehensive care of haemophiliac children and their parents.