Process of Normalization in Families With Children Affected by Hemophilia

Abstract

To understand the normalization process in families with hemophiliac children, and to explore the impact of two different therapeutic regimes on it (on-demand therapy and prophylaxis), we conducted a two-phase study using semistructured interviews. In the course of the first phase, we interviewed 13 parents belonging to 10 families with hemophiliac children in on-demand therapy. In the second phase, 5 years later, we repeated the interviews with three families who began prophylaxis at different times. We analyzed the interviews using text analysis software. The results show very different representations of hemophilia and daily life. Normalization processes involve the overcoming of a divided conception of life, and encourage the integration of care practices within daily life. Moreover, in our article we suggest that although prophylaxis facilitates the recovery of a regular family routine, it alone cannot produce normalization.