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  • 1.
    Kroik, Lena
    Umeå University, Faculty of Medicine, Department of Nursing.
    Samer och livets slut: kunskap om traditioner för att utveckla framtidens vård2021Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Sámi and the end of life: knowledge about traditions to develop care for the future

    Introduction and Aim: There is a lack of research about the end-of-life (EoL) among the Indigenous Sámi people in Sweden today. As the population ages with an increase in chronic diseases, there is also a growing need for supportive care at the EoL. Many Sámi live in rural and remote areas with large geographic distances that may contribute to challenges in accessing quality EoL care. To be able to develop EoL care for Sámi that is both culturally- safe and person-centered, it is necessary to build further on experience-based knowledge about traditions and how they are expressed. The overarching aim of this thesis is therefore to study EoL preferences, priorities, values and needs, as well as their expression, among the Sámi.

    Methods: The four sub-studies in this thesis apply different forms of qualitative design. Individual interviews, focus group discussions (FGDs), both in the form of round-table and as go-along- discussions outdoors in the mountains, as well as interviews in conjunction with use of the conversation tool, DöBra cards, have been carried out with a total of 82 participants, primarily Sámi. The participants were aged 25–84, came from different geographical and Sámi language areas, including rural, remote and urban settings, and had a range of employment and educational backgrounds. Both men and women were represented. Data analysis in sub-studies 1, 3 and 4 were utilized by Interpretive Description, Directed Content Analysis and Framework Analysis respectively, while sub-study 2 used Narrative Analysis.

    Results: Markers of Sámi identity such as the extended family, language and traditional food were salient, and supported maintaining identity in relation to the EoL. Seasonal changes and relationships to nature characterized death systems, linking people, places and times so as to be nearly inseparable (I, II). We found that important material and immaterial cultural values were transferred across generations through storytelling, with the landscape both shaping and becoming part of the stories themselves (II). A Sámi-specific form for EoL planning, e.g. a reindeer earmark as a legacy to be inherited, highlighted the importance of reflection and discussion about values and preferences for one’s future EoL (II). A conversation tool, the DöBra cards, stimulated many of the participants to speak openly about their reflections and preferences for future EoL care and their own future deaths, and provided insight into how the same card statement could be subject to different interpretations by different individuals, thus supporting person-centeredness. ‘Wild cards’ were used mostVIIIoften to clarify preferences that were related to maintaining the participant’s Sámi identity and culture (III). Experiences of EoL care indicated that support from both informal as well as formal systems had potential to contribute to a sense of community coherence. (IV). We found that in Sámi EoL contexts, the extended family included a broad network with far-reaching arms. This network functions as a social organizational system and form of support in which those involved have clear roles and responsibilities. Through this network, a wide range of resources can be activated when needed. This extended system plays a central role in linking both an ‘informal’ community-based care system with the formal care provided by majority society. Relatively few, but still notable deficits, i.e. lack of support from an extended family and poor support from formal health/social care systems, as well as few contexts in which Sámi languages were viable, were described as draining at the EoL.

    Discussion: Understanding of a Sámi death system can be one of the pillars underlying further development of EoL care for Sámi and includes traditional knowledge as well as awareness of traditions. Developing interaction with and support from formal health/care systems in difficult life situations, able to complement that available in the Sámi community, can involve challenges, but also possibilities. Making better use of those people who can function as brokers, linking majority society and the Sámi community, is one example. In summary, consciousness-raising and cultural sensitivity can contribute to cultural safety, with more secure EoL care for the Sámi.

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  • 2.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. The Centre for Rural Medicine, Storuman, Sweden.
    Eneslätt, Malin
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Department of Health, Education and Technology, Luleå University of Technology, Luleå, Sweden.
    Tishelman, Carol
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services, Stockholm, Sweden.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. The Centre for Rural Medicine, Storuman, Sweden; LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    Values and preferences for future end-of-life care among the Indigenous Sámi2022In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 2, p. 504-514Article in journal (Refereed)
    Abstract [en]

    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.

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  • 3.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Linqvist, Olav
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Tishelman, Carol
    Karolinska institutet.
    The past is present: Death systems among the Indigenous Sámi in Northern Scandinavia today2020In: Mortality, ISSN 1357-6275, E-ISSN 1469-9885, Vol. 25, no 4, p. 470-489Article in journal (Refereed)
    Abstract [en]

    Despite growing interest in Indigenous health, the lack of end-of-life (EOL) research about the Sámi people led us to explore experience-based 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 death-specific and those recruited into the death system, strengthened community identity in the EoL. 

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  • 4.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Glesbygdsmedicinskt centrum, Storuman.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. Glesbygdsmedicinskt centrum, Storuman; Karolinska Institutet, LIME/Division of Innovative Care Research, Stockholm, Sweden .
    Tishelman, Carol
    Karolinska institutet, Stockholm.
    Using narrative analysis to explore traditional Sámi knowledge through storytelling about End-of-Life2020In: Health and Place, ISSN 1353-8292, E-ISSN 1873-2054, Vol. 65, article id 102424Article in journal (Refereed)
    Abstract [en]

    In this narrative study, we investigate salient Sámi-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sámi knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sámi peoples. Analysis illustrates how important material and immaterial cultural values are transferred across generations through their connection to people, place, and time—nature-bound as opposed to calendar-bound— objects, and symbols in relation to end-of-life issues. We found that the environment both shaped storytelling and became part of the stories themselves.

  • 5.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. The Center for Rural Medicine, Region Västerbotten, Storuman, Sweden.
    Tishelman, Carol
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services, Stockholm, Sweden.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. The Center for Rural Medicine, Region Västerbotten, Storuman, Sweden; LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    A salutogenic perspective on end-of-life care among the Indigenous Sámi of Northern Fennoscandia2021In: Healthcare, E-ISSN 2227-9032, Vol. 9, no 6, article id 766Article in journal (Refereed)
    Abstract [en]

    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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