Ristevski Eli, Thompson Sharyn, Kingaby Sharon, Nightingale Claire, Iddawela Mahesh
Monash University, Warragul, Victoria, Australia.
Latrobe Community Health Service, Traralgon, Victoria, Australia.
JCO Glob Oncol. 2020 Feb;6:124-132. doi: 10.1200/JGO.19.00109.
To explore the cancer diagnosis, treatment, and survivorship experiences of Aboriginal people in the Gippsland region, Victoria, Australia, and identify factors critical to the development of a culturally appropriate cancer survivorship model of care.
Yarning circles were used to capture the stories of 15 people diagnosed with cancer and/or those of family members. Yarning circles were conducted in two locations in the Gippsland region. Sessions were facilitated by an Aboriginal Elder, audio recorded, and transcribed verbatim. Thematic analysis of the data were triangulated among three researchers and incorporated researcher reflexivity.
Cultural connections and family were critical supports on the cancer journey. Putting the needs of the family first and caring for sick family members were more important than an individual's own health. There was "no time to grieve" for one's own cancer diagnosis and look after oneself. Cancer was a private experience; however, the constancy of deaths highlighted the importance of raising family awareness. Health professionals did not always understand the importance of people's cultural and family supports in their treatment and recovery. There were negatives attitudes in hospitals when family come to visit, seeing family as too large and overstaying visiting times. Health professionals did not seek family assistance with communication of information to family members whose literacy level was low, nor did they include family in treatment decision-making. Access to services depended on family support with transport, finances, and family responsibilities, often resulting in lapses in treatment and follow-up services.
Understanding the importance of Aboriginal peoples' cultural and family connections can help to inform the development of culturally safe cancer survivorship models of care.
探索澳大利亚维多利亚州吉普斯兰地区原住民的癌症诊断、治疗及生存经历，并确定对制定符合文化需求的癌症生存照护模式至关重要的因素。
通过围坐聊天圈收集了15名癌症确诊患者及/或其家庭成员的故事。围坐聊天圈在吉普斯兰地区的两个地点进行。活动由一位原住民长者主持，进行了音频录制，并逐字转录。三位研究人员对数据进行了主题分析，并采用了研究人员反思法。
文化联系和家庭是癌症治疗过程中的关键支持。将家庭需求置于首位并照顾患病家庭成员比个人自身健康更为重要。对于自己的癌症诊断，人们“无暇悲伤”，也无暇照顾自己。癌症是一种个人经历；然而，持续不断的死亡凸显了提高家庭意识的重要性。医疗专业人员并不总是理解人们的文化和家庭支持在其治疗和康复中的重要性。当家人前来探望时，医院存在负面态度，将家人视为人数过多且探视时间过长。医疗专业人员在向识字水平低的家庭成员传达信息时，没有寻求家人的帮助，也没有让家人参与治疗决策。获得服务取决于家庭在交通、经济和家庭责任方面的支持，这往往导致治疗和后续服务出现中断。
了解原住民文化和家庭联系的重要性有助于为制定文化安全的癌症生存照护模式提供参考。
