Hamilton Rebekah J, Innella Nancy A, Bounds Dawn T
Department of Women, Children & Family Nursing, Rush University College of Nursing, 2624 Newcastle Dr., Carrollton, TX, 75007, USA.
J Genet Couns. 2016 Feb;25(1):49-61. doi: 10.1007/s10897-015-9877-x. Epub 2015 Sep 2.
This is the second article of a two part series about utilizing the life course perspective (LCP) in genetic counseling. Secondary data analysis was conducted on a grounded theory, longitudinal study which provided a wide focus on living with hereditary breast and ovarian cancer (HBOC) risk. The aim of this analysis was to explore the longitudinal data for both the temporal and social context of living with BRCA mutation genetic test results. Sixteen women from two previous studies were interviewed on multiple occasions over an 8 year time period. The LCP was used to direct a thematic analysis of the data. Families experience the consequences of knowing they carry a BRCA1 or BRCA2 gene mutation long after the initial diagnosis. These women's experiences across time reflect the concepts of the LCP and show how life is changed when families know they live with a genetic vulnerability to an adult-onset and potentially life-threatening disease. Different emphases on concepts from the LCP were evident across the different age groups. For example, the group of 40-50 year old women emphasized the concept of linked lives, those in their 30's focused on human agency and women in their 20's were more focused on timing of events. This study helps give direction to healthcare providers counseling women living with a BRCA mutation.
这是关于在遗传咨询中运用生命历程视角（LCP）的系列文章的第二篇。我们对一项扎根理论纵向研究进行了二次数据分析，该研究广泛关注遗传性乳腺癌和卵巢癌（HBOC）风险患者的生活状况。本次分析的目的是探究有关携带BRCA突变基因检测结果患者生活的时间和社会背景的纵向数据。我们对来自前两项研究的16名女性在8年时间里进行了多次访谈。生命历程视角被用于指导对数据的主题分析。在初次诊断后的很长一段时间里，家庭都在经历着知晓自己携带BRCA1或BRCA2基因突变所带来的后果。这些女性在不同时间的经历反映了生命历程视角的概念，并展示了当家庭知道自己因基因易感性而面临一种成年发病且可能危及生命的疾病时，生活是如何改变的。不同年龄组对生命历程视角概念的侧重点各不相同。例如，40至50岁的女性强调相互关联的生活这一概念，30多岁的女性关注个人能动性，而20多岁的女性则更关注事件发生的时机。这项研究有助于为为携带BRCA突变的女性提供咨询的医疗服务提供者指明方向。
