von der Lippe Charlotte, Frich Jan C, Harris Anna, Solbraekke Kari Nyheim
Centre for Rare Disorders, Oslo University Hospital HF, Rikshospitalet, Oslo, Norway.
Institute of Health and Society, University of Oslo, Oslo, Norway.
Pediatr Blood Cancer. 2017 Jan;64(1):121-127. doi: 10.1002/pbc.26167. Epub 2016 Jul 29.
In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18-24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons' hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home.
In this qualitative study, we interviewed 16 mothers of boys or men with hemophilia A or B. Data were collected via semistructured interviews and analyzed using an inductive thematic analytical approach.
Mothers experienced both practical and emotional challenges in relation to their sons' treatment, and repeated venipuncture was especially difficult emotionally. Parents preferred home treatment to hospital treatment because it was less time-consuming, less disruptive to family life, and provided a greater sense of control. Encountering healthcare professionals who were unfamiliar with hemophilia was a second major stress factor, especially when parents felt that health professionals lacked competence and were unwilling to seek advice.
While home treatment for hemophilia enables freedom, flexibility, and autonomy for the boys as well as for the family, mothers may experience treatment of hemophilia as a burden. Health professionals should provide tailored practical and emotional support to parents by probing into their experiences with treating their sons' hemophilia.
在挪威，患有血友病的男孩通常在首次出血发作后开始治疗。患有严重血友病的男孩通常在18至24个月左右开始预防性治疗。最初由卫生专业人员给予凝血因子浓缩剂，但当男孩大约4岁时，大多数父母开始在家中治疗他们的孩子。关于父母，尤其是携带血友病基因的母亲如何看待儿子血友病的医学治疗，缺乏相关研究。我们的目的是调查携带血友病基因的母亲在医院环境和家中对这种治疗的体验。
在这项定性研究中，我们采访了16位患有甲型或乙型血友病的男孩或男性的母亲。通过半结构化访谈收集数据，并采用归纳主题分析方法进行分析。
母亲们在儿子的治疗方面既经历了实际挑战，也经历了情感挑战，反复静脉穿刺在情感上尤其困难。父母更喜欢在家中治疗而不是在医院治疗，因为这样更省时，对家庭生活的干扰更小，并且能提供更强的掌控感。遇到不熟悉血友病的医护人员是第二个主要压力因素，尤其是当父母觉得医护人员缺乏能力且不愿意寻求建议时。
虽然血友病的家庭治疗为男孩及其家庭带来了自由、灵活性和自主性，但母亲们可能会将血友病的治疗视为一种负担。卫生专业人员应通过探究父母治疗儿子血友病的经历，为他们提供量身定制的实际和情感支持。
