Family communication about cystic fibrosis from the mother's perspective: an exploratory study
Family communication about cystic fibrosis from the mother's perspective: an exploratory study
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DOI：
10.1177/1744987107083594
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发表时间：
2007-11-01
影响因子：
3.1
通讯作者：
Parsons, Evelyn
中科院分区：
文献类型：
--
作者：
Coates, Nicola;Gregory, Maggie;Parsons, Evelyn
随着英国全国新生儿囊性纤维化筛查的出现，诊断后家庭内部的信息交流非常重要。由于囊性纤维化是一种隐性遗传疾病，即使是远亲也可能是携带者，因此可能有患病儿童的风险。研究人员对在孩子出生时被诊断患有囊性纤维化的母亲进行了8次半结构化访谈。对采访笔录进行了专题分析。访谈数据表明，在这些家庭中，一级亲属之间的沟通是开放的。尽管对远亲的披露更有选择性，但有证据表明，信息是通过其他家庭成员过滤给他们的。母亲们透露的主要原因似乎是需要支持，并允许亲属选择携带病毒检测。披露的障碍包括与亲属缺乏情感和地理上的亲密关系，以及希望保护亲属免受不受欢迎的信息。卫生专业人员可以通过积极地与父母讨论披露情况来协助披露过程。在父母有一段时间来适应孩子囊性纤维化的诊断后，与父母重新讨论披露的问题也可能是有帮助的。
With the advent of national newborn screening for cystic fibrosis in the UK, the communication of information within families after a diagnosis is made is important. As cystic fibrosis is a recessive genetic condition, even distant relatives may be carriers and therefore potentially at risk of having an affected child. Eight semi-structured interviews were carried out with mothers of children who were diagnosed with cystic fibrosis at around the time of birth. Thematic analysis was undertaken on interview transcripts. The interview data suggest open communication in these families with respect to first-degree relatives. Although disclosure was more selective with distant relatives, there was evidence that information was filtered to them through other family members. The main reasons for disclosure by mothers appeared to be the need for support and to allow relatives the option of carrier testing. Barriers to disclosure included lack of emotional and geographical closeness to relatives and the desire to protect relatives from unwelcome information. Health professionals may be able to assist the disclosure process by actively discussing disclosure with parents. It may also be helpful to revisit the issue of disclosure with parents after they have had some time to adjust to the diagnosis of cystic fibrosis in their child.