Department of Psychology, University of Bologna, Bologna, Italy.
Qual Health Res. 2011 Dec;21(12):1667-78. doi: 10.1177/1049732311417456. Epub 2011 Aug 2.
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.
为了了解伴有血友病患儿的家庭的正常化过程，并探讨两种不同治疗方案（按需治疗和预防治疗）对其的影响，我们使用半结构化访谈进行了一项两阶段研究。在第一阶段，我们对 10 个接受按需治疗的血友病患儿家庭中的 13 位家长进行了访谈。在第二阶段，5 年后，我们对三个不同时间开始预防治疗的家庭进行了重复访谈。我们使用文本分析软件对访谈进行了分析。结果显示，对血友病和日常生活的描述非常不同。正常化过程涉及克服生活分裂的观念，并鼓励将护理实践融入日常生活。此外，我们在文章中还提出，尽管预防治疗有助于恢复正常的家庭常规，但它本身并不能实现正常化。
