Gregory M, Boddington P, Dimond R, Atkinson P, Clarke A, Collins P
Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, UK.
Haemophilia. 2007 Mar;13(2):189-98. doi: 10.1111/j.1365-2516.2006.01417.x.
This study examines communication within families affected by haemophilia, focusing especially on communication about carrier status. A qualitative study using semi-structured interviews with family members in the UK revealed recurrent patterns in communication strategies and styles. Participants drew a marked contrast between the nature of communication within the clinic and within the home. In families, it is notable that communication usually occurs within the context of concrete experience of the condition. Noticeable differences existed in families with obligate carriers when compared with families with non-obligate carrier daughters. In families with affected sons, daughters may have more experience of haemophilia and consequently more understanding of their possible carrier status than in families with an affected father. Families also typically make value judgements and comments on coping strategies when they communicate about the condition. Readiness to receive information is very variable, and depends upon factors such as personality and life stage. Information may seem to be successfully communicated but the recipient may sometimes actually comprehend much less, only understanding more fully later or when the information becomes directly relevant to them. Periodic checking of understanding of different family members, and the provision of written information, may be helpful.
本研究考察了受血友病影响的家庭内部的沟通情况，尤其关注关于携带者状态的沟通。一项对英国家庭成员进行半结构化访谈的定性研究揭示了沟通策略和方式中反复出现的模式。参与者明确对比了诊所内和家庭内沟通的性质。在家庭中，值得注意的是，沟通通常发生在该疾病具体经历的背景下。与有非义务性携带者女儿的家庭相比，有义务性携带者的家庭存在明显差异。在有患病儿子的家庭中，女儿可能比有患病父亲的家庭中的女儿对血友病有更多的经历，因此对她们可能的携带者状态有更多的理解。当家庭就该疾病进行沟通时，通常也会对应对策略做出价值判断和评论。接收信息的意愿差异很大，这取决于个性和生活阶段等因素。信息看似成功传达，但接收者有时实际理解的要少得多，只是在之后或信息与他们直接相关时才会更充分地理解。定期检查不同家庭成员的理解情况并提供书面信息可能会有所帮助。
