Women with hemophilic children: knowledge and care practices

Mujeres con hijos hemofílicos: saberes y prácticas de cuidado

Introduction: hemophilia carries complications and comorbidities which impact quality of life of the patient and his caregiver, typically a woman. Objective: to describe the experiences, knowledge and care practices of mothers of sons diagnosed with severe and/or moderate symptomatic hemophilia, seen at a hospital in Colombia. Methodology: a qualitative hermeneutic phenomenological study. Nine mother caregivers participated. In-depth interviews and a focus group were used for data obtention. A simultaneous analysis with data collection was conducted using the Strauss and Corbin proposal.  The study complied with the ethical considerations set by Resolution 8430 of 1993 of the Colombian Ministry of Health which rated it as minimum risk research. Results: the following is highlighted from the information provided by caregivers: 1. Hemophilia as a condition that allows the individual´s normal development and not as a disease, 2. Insistence on that hemophilia is not infectious or transmissible by blood, 3. The perception that it is only transmitted by females. 4. The introduction of the clotting factor prophylaxis has improved patients´ physical status, 5. Practices aimed at preventing and reducing complications.  6. The importance of physical, emotional and spiritual care of their children. Conclusions: hemophilia creates an unbreakable bond between mothers and children due to the high demand of care, based on its complexity. Two categories emerged from the information provided by mothers: knowledge about hemophilia and care process, and physical, emotional, religious and dietary care practices.