Health Services and Systems Research, Duke-NUS Medical School, Singapore, Singapore.
Duke-NUS Medical School, Singapore, Singapore.
Psychooncology. 2020 Oct;29(10):1557-1563. doi: 10.1002/pon.5452. Epub 2020 Jul 27.
This study aimed to provide an in-depth exploration of follow-up care experiences and supportive care needs in long-term colorectal cancer (CRC) survivors within multiethnic Asian communities.
Semi-structured in-depth interviews were conducted on a purposive sample of 30 long-term CRC survivors who had completed all treatment without recurrence ranging 2 to 17 years in Singapore. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted following grounded theory approach.
Four themes represented the experience of the Asian long-term CRC survivors: (a) living with long-term consequences, (b) dealing with unceasing adaptation demands, (c) navigating a healthcare journey with limited direction, (d) regaining mastery through adversity. CRC and its treatment had profound physical impacts on some long-term survivors and these effected their psychological well-being. A sense of abandonment and vulnerability following the cessation of a 5-year follow-up care was repeatedly expressed. Participants defined recovery from CRC as not merely surviving but also having high physical function and full independence. They often sought less conventional remedies and medicine based on cultural beliefs rather than current evidence. Participants noted pervasive social stigma associated with CRC that impeded their inclusion in the workforce.
Asian long-term CRC survivors experienced multiple challenges and needs relating to the care experience, information provision and workforce stigmatization, and several of which were unique to the Asian context. Future work will need to consider the implementation of culturally tailored cancer survivorship care plans that incorporate the specific needs of Asian CRC survivors.
本研究旨在深入探讨亚洲多民族群体中长期结直肠癌（CRC）幸存者的随访护理体验和支持性护理需求。
在新加坡，对 30 名完成所有治疗且无复发（2 至 17 年）的长期 CRC 幸存者进行了目的抽样的半结构式深入访谈。访谈进行了录音，并逐字转录。采用扎根理论方法进行主题分析。
四项主题代表了亚洲长期 CRC 幸存者的体验：（a）长期后果的生活，（b）应对持续的适应需求，（c）在有限指导的医疗保健之旅中导航，（d）通过逆境恢复掌控权。CRC 及其治疗对一些长期幸存者产生了深远的身体影响，并影响了他们的心理健康。在结束 5 年随访护理后，他们反复表达了被抛弃和脆弱的感觉。参与者将从 CRC 中恢复定义为不仅幸存，而且具有较高的身体功能和完全独立。他们经常根据文化信仰而不是当前证据寻求不太传统的补救措施和药物。参与者注意到与 CRC 相关的普遍社会耻辱感，这阻碍了他们融入劳动力。
亚洲长期 CRC 幸存者在护理体验、信息提供和劳动力污名化方面经历了多种挑战和需求，其中一些是亚洲特有的。未来的工作将需要考虑实施针对特定亚洲 CRC 幸存者需求的文化定制的癌症生存护理计划。
