Carr Tracey, Arcand Lorna, Roberts Rose, Sedgewick Jennifer, Ali Anum, Groot Gary
Community Health and Epidemiology (Carr, Sedgewick, Ali, Groot), University of Saskatchewan, Saskatoon, Sask.; Patient Partner (Arcand), Whitecap, Sask.; Gwenna Moss Centre for Teaching and Learning (Roberts), Centre for Teaching and Learning (Roberts) and College of Medicine (Groot), University of Saskatchewan, Saskatoon, Sask.
CMAJ Open. 2020 Dec 10;8(4):E852-E859. doi: 10.9778/cmajo.20200012. Print 2020 Oct-Dec.
Although disparities in cancer rates, later diagnoses and lower survival rates between Indigenous and non-Indigenous people have been documented, little is known about how Indigenous patients with cancer encounter the health care system. We explored perceptions and experiences of Indigenous patients with cancer and their families to understand better how 2 key concepts - trust and world view - influence cancer care decisions.
In this patient-oriented study that included participation of 2 patient partners, qualitative data were collected from Indigenous patients with cancer and their families using an Indigenous method of sharing circles. The sharing circle occurred at a culturally appropriate place, Wanuskewin Heritage Park, Saskatoon, on Sept. 22, 2017. The first patient partner started the sharing circle by sharing their cancer journey, thus engaging the Indigenous methodology of storytelling. This patient partner was involved in selecting the data collection method and recruiting participants through snowballing and social media. Trust and world view were employed as meta themes to guide our examination of the data. In keeping with Indigenous methodology, interview transcripts were analyzed using narrative analysis. The themes were reviewed and verified by a second Indigenous patient partner.
There were 14 participants in the sharing circle. The 2 meta themes, trust and world view, comprised 8 subthemes. The meta theme trust included mistrust with diagnosis and Western treatment after cancer therapy, protection of Indigenous medicine and physician expertise with treatment recommendations. The world view meta theme included the following subthemes: best of both worlds, spiritual beliefs, required to be strong for family and importance of knowing Indigenous survivors.
This study displayed complex relations between trust and world view in the cancer journeys of Indigenous patients and their families. These findings may assist health care providers in gaining a better understanding of how trust and world view affect the decision-making of Indigenous patients regarding cancer care.
尽管已有文献记载了原住民与非原住民在癌症发病率、诊断延迟和生存率较低方面存在差异,但对于癌症原住民患者如何接触医疗保健系统却知之甚少。我们探讨了癌症原住民患者及其家人的看法和经历,以更好地理解信任和世界观这两个关键概念如何影响癌症治疗决策。
在这项以患者为导向的研究中,有两名患者伙伴参与其中,采用原住民分享圈的方法从癌症原住民患者及其家人那里收集定性数据。分享圈于2017年9月22日在萨斯卡通市文化适宜的地点瓦努斯凯温遗产公园举行。第一名患者伙伴通过分享他们的癌症历程开启了分享圈,从而采用了原住民讲故事的方法。这名患者伙伴参与了数据收集方法的选择,并通过滚雪球和社交媒体招募参与者。信任和世界观被用作元主题来指导我们对数据的审查。按照原住民方法,使用叙事分析对访谈记录进行分析。这些主题由第二名原住民患者伙伴进行审查和验证。
分享圈有14名参与者。信任和世界观这两个元主题包含8个子主题。信任元主题包括对癌症治疗后的诊断和西医治疗的不信任、对原住民医学的保护以及对医生治疗建议专业知识的信任。世界观元主题包括以下子主题:两全其美、精神信仰、为家人保持坚强的必要性以及认识原住民幸存者的重要性。
本研究展示了原住民患者及其家人在癌症历程中信任和世界观之间的复杂关系。这些发现可能有助于医疗保健提供者更好地理解信任和世界观如何影响原住民患者在癌症治疗方面的决策。