a Cancer Council NSW , Practical Support Unit , Sydney , Australia.
b Psycho-Oncology Co-Operative Research Group , The University of Sydney , NSW , Australia.
J Psychosoc Oncol. 2019 May-Jun;37(3):383-397. doi: 10.1080/07347332.2018.1551261. Epub 2019 Feb 4.
Chinese migrant cancer survivors and carers face multiple barriers to accessing quality cancer information and support. This study aimed to explore the challenges and unmet needs experienced by the Australian Chinese community affected by cancer, and understand the contexts that hindered optimal care for this community.
Adult cancer survivors and carers, whose native language is Mandarin or Cantonese, were recruited through community cancer support organizations. Bilingual researchers conducted focus groups with participants in either Mandarin or Cantonese. Focus groups were audio-recorded, transcribed, translated into English and thematically analyzed using qualitative methods.
62 Chinese-speaking participants (34 cancer survivors and 28 carers) participated in one of the eight focus groups conducted. The three main themes were (1) unmet information and support needs (trust, wellness, and rights); (2) barriers compounding unmet needs (language, health literacy, culture); and (3) participants' recommendations regarding cancer information and support provision. Seven subthemes of unmet needs were also identified: Trust (e.g., communication barriers, health system barriers, comparison regarding the care received), wellness (e.g., cultural differences produce conflict on views about wellness, need for psychological, community, and spiritual support), and rights (e.g., low awareness of financial and legal assistance, other factors increasing or reducing vulnerability).
This study highlights the needs and provides new insights into the impact of language, culture and health literacy barriers on the unmet information and support needs of the Chinese community affected by cancer. The key findings will inform the development of culturally targeted information and support resources for this community.
中国移民癌症幸存者及其照顾者在获取高质量癌症信息和支持方面面临多种障碍。本研究旨在探讨受癌症影响的澳大利亚华人社区所面临的挑战和未满足的需求，并了解阻碍该社区获得最佳护理的背景因素。
通过社区癌症支持组织招募母语为普通话或广东话的成年癌症幸存者及其照顾者。双语研究人员用普通话或广东话对参与者进行焦点小组访谈。焦点小组的讨论内容被录音、转录、翻译成英文，并使用定性方法进行主题分析。
共有 62 名讲中文的参与者（34 名癌症幸存者和 28 名照顾者）参加了 8 个焦点小组中的一个。三个主要主题是（1）未满足的信息和支持需求（信任、健康和权利）；（2）加剧未满足需求的障碍（语言、健康素养、文化）；以及（3）参与者关于癌症信息和支持提供的建议。还确定了七个未满足需求的子主题：信任（例如，沟通障碍、医疗体系障碍、对所接受的护理的比较）、健康（例如，文化差异导致对健康的看法产生冲突，需要心理、社区和精神支持）和权利（例如，对财务和法律援助的认识度低，其他因素增加或减少了脆弱性）。
本研究强调了语言、文化和健康素养障碍对受癌症影响的华人社区的未满足信息和支持需求的影响，并提供了新的见解。主要研究结果将为该社区制定有针对性的文化信息和支持资源提供信息。
