遗传性癌症综合征携带者:感觉被抛在角落里
Celia Diez de Los Rios de la Serna1, Maria Teresa Lluch-Canut1, Maria Paz Fernández-Ortega2
1PhD Programme, Faculty of Nursing, Bellvitge Campus, University of Barcelona (UB), Barcelona, Spain.
患有遗传性癌症综合征的人希望获得有关健康行为和长期管理的专业指导. 护士对于支持至关重要,但需要对遗传性癌症综合征有更深入的了解.
科学领域:
- 在瘤学瘤学.
- 遗传学 遗传学 是一个
- 公共卫生 公共卫生
背景情况:
- 关于对遗传性癌症综合征的健康促进干预措施的证据有限.
- 了解患者支持和信息来源对于这一群体至关重要.
研究的目的:
- 探索患有遗传性癌症综合征的个体的经验和需求.
- 确定他们的信息需求,关于预防/心理健康的观点,以及所需的护理支持.
主要方法:
- 来自10个欧洲国家的22名参与者 (幸存者和幸存者) 的定性研究.
- 个人半结构面试使用反射主题分析进行分析.
- 患者和公众参与小组为研究设计和分析做出了贡献.
主要成果:
- 经验在各个国家都是一致的,不管测试/查的访问.
- 参与者报告说,对于降低癌症风险的健康行为信息不足.
- 患者寻求在线来源和患者团体的支持和信息,强调未满足的需求和医疗保健提供者的局限性.
结论:
- 患有遗传性癌症综合征的个人需要专业人员参与长期管理和可靠的信息.
- 在瘤学中增加基因组整合需要加强对这些患者的专业支持.
- 护士在自我管理和决策方面发挥着关键作用,但需要有关遗传性癌症综合征的专业技能和知识.
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