Kroik Lena, Tishelman Carol, Stoor Krister, Edin-Liljegren Anette
Department of Nursing, Umeå University, 901 87 Umeå, Sweden.
The Center for Rural Medicine, Region Västerbotten, 923 31 Storuman, Sweden.
Healthcare (Basel). 2021 Jun 19;9(6):766. doi: 10.3390/healthcare9060766.
There is limited empirical data about both health and end-of-life (EoL) issues among the Indigenous Sámi of Fennoscandia. We therefore aimed to investigate experiences of EoL care and support among the Sámi, both from the Sámi community itself as well as from more formalized health and social care services in Sweden. Our primary data source is from focus group discussions (FGDs) held at a Sámi event in 2017 with 24 people, complemented with analysis of previously collected data from 15 individual interviews with both Sámi and non-Sámi informants familiar with dying, death and bereavement among Sámi; "go-along" discussions with 12 Sámi, and individual interviews with 31 Sámi about advance care planning. After initial framework analysis, we applied a salutogenic model for interpretation, focusing on a sense of community coherence. We found a range of generalized resistance resources in relation to the Sámi community, which appeared to support EoL care situations, i.e., Social Organization; Familiarity with EoL Care, Collective Cultural Heritage; Expressions of Spirituality; Support from Majority Care Systems; and Brokerage. These positive features appear to support key components of a sense of community coherence, i.e., comprehensibility, meaningfulness and manageability. We also found relatively few, but notable deficits that may diminish the sense of community coherence, i.e., lack of communication in one's own language; orientation, familiarity and/or agreement in contacts with formal health and social care systems; and/or support from extended family. The results suggest that there is a robust basis among Sámi for well-functioning EoL care; a challenge is in developing supportive interactions with the majority health and social care systems that support and complement these structures, for partnership in developing care that is meaningful, comprehensible and manageable even in potentially difficult EoL situations.
关于斯堪的纳维亚半岛原住民萨米人的健康和临终问题，实证数据有限。因此，我们旨在调查萨米人在临终护理和支持方面的经历，这些经历既来自萨米社区自身，也来自瑞典更正规的健康和社会护理服务机构。我们的主要数据来源是2017年在一次萨米人活动中举行的焦点小组讨论（FGD），参与讨论的有24人，同时还对之前收集的15份个人访谈数据进行了分析，这些访谈对象既有熟悉萨米人临终、死亡和丧亲情况的萨米人，也有非萨米人；与12名萨米人进行了“随行”讨论，并就预先护理计划对31名萨米人进行了个人访谈。在初步的框架分析之后，我们应用了一种健康生成模型进行解读，重点关注社区凝聚力。我们发现了一系列与萨米社区相关的普遍抵抗资源，这些资源似乎对临终护理情况起到了支持作用，即社会组织；对临终护理的熟悉程度；集体文化遗产；精神性表达；多数护理系统的支持；以及中介作用。这些积极特征似乎支持了社区凝聚力的关键要素，即可理解性、意义性和可管理性。我们还发现了相对较少但值得注意的缺陷，这些缺陷可能会削弱社区凝聚力，即缺乏用本族语言进行的沟通；在与正规健康和社会护理系统接触时缺乏方向感、熟悉感和/或认同感；以及/或者缺乏来自大家庭的支持。结果表明，萨米人有一个良好运作的临终护理的坚实基础；一个挑战在于与多数健康和社会护理系统发展支持性互动，这些系统能够支持并补充这些结构，以便在发展即使在潜在困难的临终情况下也有意义、可理解和可管理的护理方面建立伙伴关系。
