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Process of normalization in families with children affected by hemophilia
Francesca Emiliani1, Sabrina Bertocchi, Silvia Potì
1Department of Psychology, University of Bologna, Bologna, Italy.
Insights
Normalization in families with hemophiliac children is achieved by integrating care into daily life. While prophylaxis aids routine, it doesn't guarantee full normalization for children with hemophilia.
Area of Science:
- Pediatric Hematology
- Family Studies
- Psychosocial Health
Background:
- Hemophilia significantly impacts family dynamics and daily routines.
- Understanding normalization is crucial for families managing chronic childhood conditions.
Purpose of the Study:
- To investigate the normalization process in families with hemophiliac children.
- To compare the effects of on-demand therapy versus prophylaxis on normalization.
Main Methods:
- A two-phase study utilizing semistructured interviews.
- Qualitative analysis of interviews from 10 families (on-demand therapy) and 3 families (prophylaxis).
- Longitudinal follow-up after 5 years.
Main Results:
- Families' representations of hemophilia and daily life differed significantly between therapy groups.
- Normalization involves integrating care practices and overcoming a divided life conception.
- Prophylaxis facilitates family routine recovery but does not solely achieve normalization.
Conclusions:
- Normalization is an active process of integrating hemophilia care into the family's life.
- Therapeutic regimes influence, but do not solely determine, the normalization process.
- Further research into psychosocial support for families managing hemophilia is warranted.
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.
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