Ngwenya Nothando, Kenten Charlotte, Jones Louise, Gibson Faith, Pearce Susie, Flatley Mary, Hough Rachael, Stirling L Caroline, Taylor Rachel M, Wong Geoff, Whelan Jeremy
1 Cancer Clinical Trials Unit, University College Hospital , London, United Kingdom .
2 Division of Psychiatry, Palliative Care Research Department, University College London , London, United Kingdom .
J Adolesc Young Adult Oncol. 2017 Jun;6(2):200-212. doi: 10.1089/jayao.2016.0055. Epub 2017 Jan 11.
To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.
回顾关于16至40岁癌症患者（青年成人）及其非正式照料者临终关怀体验与偏好的定性文献。采用叙事综合法对定性研究进行系统综述，依据2006年英国经济与社会研究委员会的研究方法项目指南。检索了2004年1月至2015年10月期间的七个电子文献数据库、两个临床试验数据库和三个相关论文数据库。纳入了来自十二个国家的18篇文章。所选研究的患者样本中至少5%在16至40岁年龄范围内。这些研究在目的、重点和样本方面存在异质性，但描述了癌症患者临终关怀的不同方面。积极体验包括促进适应性应对和接受姑息性家庭护理，而消极体验是失去“自我”以及服务和环境不利。偏好包括以家庭为中心的护理方式、关于生命终结的坦诚对话以及促进正常生活。几乎没有证据聚焦于青年成人的临终需求。对包含一些青年成人的报告进行分析时，未按年龄探讨体验或偏好；因此，难以明确识别特定年龄问题。通过本次综述，我们建议需要支持性干预措施和教育，以促进与年轻人在适当层面进行开放和坦诚的沟通。未来研究应聚焦于关于癌症青年成人及其非正式照料者临终体验和偏好的特定年龄证据。
