Despite growing interest in Indigenous health, the lack of end-of-life (EOL) research about the Sámi people led us to explore experiencebased knowledge about EoL issues among the Sámi. We aim here to describe Sámi death systems and the extent to which Kastenbaum's conceptualisation of death systems is appropriate to Sámi culture. Transcribed conversational interviews with 15 individuals, chosen for their varied experiences with EoL issues among Sámi, were first inductively analysed. Kastenbaum's model of death systems, with functions along a time trajectory from prevention to social consolidation after death, and the components of people, times, places, and symbols/ objects, was applied thereafter in an effort to understand the data. The model provides a framework for understanding aspects of the death system that were Sámi-specific, Sámi-relevant as well as what has changed over time. Whereas Kastenbaum differentiated among the components of the death system, our analysis indicated these were often so interrelated as to be nearly inseparable among the Sámi. Seasonal changes and relationships to nature instead of calendar time dominated death systems, linking people, places and times. The extended family's role in enculturation across generations and EoL support was salient. Numerous markers of Sámi culture, both deathspecific and those recruited into the death system, strengthened community identity in the EoL.
Intoduction: Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. Aim:We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi.Methods: This qualitative study is based on interviews with 31 self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals' card rankings were collated and compiled on group level to examine variation in card choices.Findings: All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card 'to have those I am close to around me'. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. Conclusions:The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden.
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.
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