Communicating genetic risk information within families: a review

Communicating genetic risk information within families: a review
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DOI:
10.1007/s10689-010-9380-3
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发表时间:
2010-12-01
期刊:
影响因子:
2.2
通讯作者:
Michie, Susan
Michie, Susan
中科院分区:
医学4区
文献类型:
--
作者:
Wiseman, Mel;Dancyger, Caroline;Michie, Susan

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本文综述了遗传风险信息的家庭沟通,讨论了以下问题:沟通的功能和影响;家庭成员被告知遗传风险信息的内容、对象和方式;对咨询者、亲属和关系的影响;是否存在性别和条件差异;以及使用了哪些理论和方法。一项系统性检索策略使用多种方法识别了1985-2009年发表的同行评审期刊文章。叙述性合成被用来提取和总结与研究问题相关的数据。这篇综述确定了33篇文章,发现了一个一致的模式的结果,即家庭内遗传风险的沟通是受个人的信念,沟通遗传风险的可取性和家庭内的关系密切。没有一项研究直接调查沟通对接受咨询者或其家庭的影响,根据接受咨询者的性别或条件的差异,也没有调查与亲属沟通的替代方法。这些发现主要适用于迟发性疾病,如遗传性乳腺癌和卵巢癌。最常用的理论是家庭系统理论,方法一般是定性的。这篇综述指出了多因素影响谁是沟通的家庭和他们被告知有关遗传风险的信息。需要进一步的研究来调查遗传风险信息对家庭系统的影响以及性别和条件之间的差异。
This review of family communication of genetic risk information addresses questions of what the functions and influences on communication are; what, who and how family members are told about genetic risk information; what the impact for counsellee, relative and relationships are; whether there are differences by gender and condition; and what theories and methodologies are used. A systematic search strategy identified peer-reviewed journal articles published 1985-2009 using a mixture of methodologies. A Narrative Synthesis was used to extract and summarise data relevant to the research questions. This review identified 33 articles which found a consistent pattern of findings that communication about genetic risk within families is influenced by individual beliefs about the desirability of communicating genetic risk and by closeness of relationships within the family. None of the studies directly investigated the impact of communication on counsellees or their families, differences according to gender of counsellee or by condition nor alternative methods of communication with relatives. The findings mainly apply to late onset conditions such as Hereditary Breast and Ovarian Cancer. The most frequently used theory was Family Systems Theory and methods were generally qualitative. This review points to multifactorial influences on who is communicated with in families and what they are told about genetic risk information. Further research is required to investigate the impact of genetic risk information on family systems and differences between genders and conditions.