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首页> 外文期刊>European journal of cancer care >Experiencing genetic counselling for hereditary cancers: the client's perspective.
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Experiencing genetic counselling for hereditary cancers: the client's perspective.

机译：体验遗传性癌症的遗传咨询：服务对象的观点。

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摘要

As genetic health care expands and genetic testing becomes more widely available, it becomes relevant to understand how individuals involved in genetic counselling are integrating this new information in health management and into their lives. This article examines the client's experiences of genetic counselling for hereditary cancers, which definitely play a major role in the assessment of their needs and also lead to improvement of the psychosocial focus in genetic counselling protocols. Methods include a semi-structured interview, administered in two focus groups, comprising 10 (5 + 5) participants after attending genetic counselling for hereditary cancers at a Portuguese public hospital. Findings suggest an experience embedded in two dimensions: (1) instrumental (goals, needs and decision making); and (2) emotional (uncertainty regarding genetic risk screening and an emotional complex). Ambiguity plays a crucial role, especially in two moments: (1) the hiatus between genetic testing and the screening results; and (2) after being confirmed as carrying a cancer susceptibility gene mutation. The spectrum of genetic illness comprises an intensely complex emotional experience that challenges individuals and their families in terms of health management, and personal and family planning. Recommendations are included in order to enhance the services available by expanding psychosocial support.
机译：随着基因医疗保健的发展和基因检测的日益广泛，了解参与基因咨询的个人如何将这种新信息纳入健康管理并融入他们的生活中变得至关重要。本文探讨了客户对遗传性癌症进行遗传咨询的经验，这些经验在评估他们的需求方面绝对起着主要作用，并且也导致了遗传咨询方案中对心理社会关注的改善。方法包括在两个焦点小组中进行的半结构访谈，包括在葡萄牙一家公立医院接受遗传性遗传咨询的10名（5 + 5）参与者。研究结果表明，这种经验包含两个方面：（1）工具性的（目标，需求和决策）; （2）情绪激动（关于遗传风险筛查和情绪激动的不确定性）。歧义性起着至关重要的作用，尤其是在以下两个时刻：（1）基因检测与筛选结果之间的差距; （2）被确认为携带癌症易感基因突变后。基因疾病的范围包括非常复杂的情感体验，在健康管理以及个人和计划生育方面挑战着个人及其家人。包括了一些建议，以通过扩大社会心理支持来增强可用的服务。

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