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沉默的轮回:原住民女性在支持性癌症护理中克服社会和历史障碍。

Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care.

作者信息

Hammond Chad, Thomas Roanne, Gifford Wendy, Poudrier Jennifer, Hamilton Ryan, Brooks Carolyn, Morrison Tricia, Scott Tracy, Warner Doris

机构信息

School of Rehabilitation Sciences, University of Ottawa, Ottawa, ON, Canada.

School of Nursing, University of Ottawa, Ottawa, ON, Canada.

出版信息

Psychooncology. 2017 Feb;26(2):191-198. doi: 10.1002/pon.4335. Epub 2017 Jan 16.

DOI:10.1002/pon.4335
PMID:27935147
Abstract

BACKGROUND

First Nations people with cancer in Canada confront several critical inequities in physical and psychosocial domains. First Nations women are at a particular disadvantage as they are disproportionately affected by social determinants of health, but how they navigate these challenges within their communities is poorly understood.

OBJECTIVE

Our study explores survivorship experiences of First Nations women with cancer and their caregivers. Drawing from a larger data set on survivorship, we identify several major barriers to cancer communication and support in First Nations communities.

METHODS

Our team conducted a participatory, arts-based study using several data collection methods (interviews, sharing sessions, photovoice, and other creative activities) with 43 participants (24 cancer survivors and 19 caregivers) from four First Nations communities in Canada.

RESULTS

Two major themes have emerged out of our data analyses: (1) suffering without support leads to cycles of silence and (2) community-based supports can disrupt these cycles. We identified several social, historical, and institutional barriers to speaking about cancer and finding/providing support; however, communities met the challenge of silence through voluntary and unsolicited provision of support.

CONCLUSIONS

Widespread silence around cancer reflects both the limited access First Nations people have to formal, supportive programs and services, as well as the creative ways they provide emotional, social, and financial support within their informal networks. Beyond the support of their communities, they also required institutional provision of care that is culturally safe, addressing the colonial impacts on cancer communication and the disproportionate burdens of disease in First Nations communities.

摘要

背景

加拿大的原住民癌症患者在身体和心理社会领域面临着一些严重的不平等问题。原住民女性处于特别不利的地位,因为她们受到健康的社会决定因素的影响尤为严重,但人们对她们如何在自己的社区中应对这些挑战却知之甚少。

目的

我们的研究探讨了原住民癌症女性患者及其照顾者的生存经历。基于一个关于生存的更大数据集,我们确定了原住民社区中癌症沟通和支持的几个主要障碍。

方法

我们的团队开展了一项基于艺术的参与式研究,使用了多种数据收集方法(访谈、分享会、照片声音法以及其他创意活动),对来自加拿大四个原住民社区的43名参与者(24名癌症幸存者和19名照顾者)进行了研究。

结果

通过数据分析得出了两个主要主题:(1)缺乏支持的痛苦导致沉默的循环,(2)基于社区的支持可以打破这些循环。我们确定了在谈论癌症以及寻找/提供支持方面存在的几个社会、历史和制度障碍;然而,社区通过自愿和主动提供支持应对了沉默的挑战。

结论

围绕癌症的普遍沉默既反映了原住民获得正规支持项目和服务的机会有限,也反映了他们在非正式网络中提供情感、社会和经济支持的创造性方式。除了社区的支持外,他们还需要机构提供具有文化安全性的护理,解决殖民主义对癌症沟通的影响以及原住民社区中疾病负担过重的问题。

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