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Samer och livets slut: kunskap om traditioner för att utveckla framtidens vård
Umeå University, Faculty of Medicine, Department of Nursing. (Arcum)ORCID iD: 0000-0003-4546-5269
2021 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Introduktion och syfte: Det finns kunskapsluckor när det gäller vård i livets slut bland samer i Sverige idag. I takt med en åldrande befolkning ökar antalet kroniska sjukdomar som leder till ett stigande behov av stödjande insatser vid vård i livets slut. Många samer bor i glesbygd med stora geografiska avstånd och det kan vara en utmaning att få vård i livets slut av god kvalitet. För att kunna utforma vård i livets slut som är både kulturellt säker och personcentrerad, behövs kunskap om kulturella uttryck och traditioner som bland annat bygger på människors erfarenheter. Kastenbaums modell av ett så kallat dödssystem, och ett salutogent perspektiv enligt Antonovsky, har bidragit till tolkningen av resultaten. Det övergripande syftet med denna avhandling är att studera önskemål, prioriteringar, värderingar och behov såväl som uttryck bland samer relaterade till livets slut och omhändertagandet därefter.

Metoder: De fyra delstudier som denna avhandling omfattar har kvalitativ design av olika slag. Individuella intervjuer, fokusgruppsdiskussioner både vid rundabordssamtal och go-along diskussioner utomhus i fjällmiljö samt intervjuer i samband med användning av samtalsverktyget DöBra-kortleken, har genomförts. Totalt 82 personer, i åldrarna 25–84 år har deltagit, huvudsakligen samer. Deltagarna har kommit från olika geografiska orter och språkområden, från både glesbygd och tätort, och har varierande yrkeserfarenheter och utbildning. Både män och kvinnor var representerade. Data har analyserats i delstudie 1, 3 och 4 med Interpretive Description, Directed Content Analysis och Framework Analysis. Narrativ analys har använts med data från go-along diskussionerna.

Resultat: Markörer som stödjer en bibehållen samisk identitet som storfamiljen, språk och traditionell mat, framstod som särskilt viktiga i livet slut (I, II). Säsongsförändringar och förhållandet till naturen präglade det samiska dödssystemet och länkade samman människor, platser och tider så att de blev nästan oskiljaktiga (I, II). Genom traditionell kunskap blev materiella och immateriella värden förmedlade via berättande, där landskapet bidrog till utformningen av berättelsen (II). Samiskt specifika former för att uttrycka sina önskningar för sista tiden i livet, som exempelvis att låta ett renmärke gå i arv, underströk betydelsen av reflektion och diskussion om samiska värderingar och preferenser för det framtida slutet av livet (II). Ett samtalsverktyg, DöBra-kortleken, som stimulerade många av deltagarna att gärna berätta hur de tänkte och önskade sig sin eventuella vård i livets slut och sitt framtida döende, gav insikt om att samma kortpåstående kan tolkas olika av olika individer och därmed stödja personcentrerad vård. De valfria korten användes oftast i samband med att tydliggöra önskningar vilka hörde samman med att bibehålla en samisk identitet och kultur (III). Erfarenheter av vård i livets slut visade att stöd från bådeVIinformella och formella system skulle kunna bidra till en känsla av sammanhang på kollektiv nivå (IV). Den samiska storfamiljen visade sig i sammanhang kring livets slut inkludera ett brett nätverk med långa förgreningar. Detta nätverk fungerar som ett socialt organisatoriskt system och en form av stöd där de involverade har tydliga roller och ansvar. Genom detta nätverk kan ett stort antal resurser aktiveras. Detta utökade system med människor, som överbryggar det samiska och majoritetssamhället, spelar en central roll när det gäller att koppla ihop det som ofta kallas ett ”informellt” vårdsystem med de formella vård- och omsorgssystemen. Relativt få men ändå märkbara brister, som avsaknad av stöd från en storfamilj, bristande stöd från de formella vård- och omsorgssystemen, samt få sammanhang där samiska språk kan användas, nämndes som tärande vid livets slut.

Diskussion: Som grund för att vidare utveckla vård i livets slut för samer kan förståelsen av ett samiskt dödssystem vara en av de bärande delarna. Där ingår kännedom om traditioner och traditionell kunskap. Att utveckla interaktion med och stöd från formella system för att komplettera det samiska samhället i svåra situationer, som livets slut, kan ses som utmaningar men också innebära möjligheter. Att ta vara på personer som kan fungera som länkar mellan majoritetssamhället och det samiska samhället utgör ett exempel. Sammantaget kan medvetandegörande och kulturell ödmjukhet bidra till kulturellt tryggare vård för samer i livets slut.

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.

Abstract

Saemieh jïh jielemen minngiegietjie: maahtoe aerpievuekiej bïjre guktie båetije biejjiej hoksem evtiedidh

Aalkove jïh aajkoe: Ibie gaajhkem daejrieh hoksen bïjre jielemen minngiegietjesne saemiej gaskem Sveerjesne daan biejjien. Gosse almetjh voerestuvvieh dellie kronihken skïemtjelassi låhkoem jeanene mejstie almetjh daarpesjieh viehkiem dåarjojne hoksesne jielemen minngiegietjesne. Jïjnjh saemieh voenine årroeh stoerre geografijen gåhkojne jïh maahta haesteme sjïdtedh buerie hoksem åadtjodh jielemen minngiegietjesne. Guktie maahtah hoksem jielemen minngiegietjesne hammoedidh mij lea dovne kulturellen vuekine jïh aktegs almetjasse sjïehtedamme, dellie maahtoem daarpesje kulturellen hammoej jïh aerpievuekiej bïjre mah leah gaskem jeatjah almetji dååjrehtimmiej mietie. Kastenbaumen modelle, guktie gohtje, sealadimmieöörnege jïh salutogent perspektijve Antonovskyn mietie, leah meatan illeldahkine gosse toelhkestimh. Bijjemes aajkoe daejnie tjaalegisnie lij vaajtelassh, prioriteeremh, vuarjasjimmieh jïh daerpiesvoeth goerehtidh lissine dej vuekieh saemiej luvnie, relateereme hoksese jielemen minngiegietjesne jïh såjhtoem dan mænngan.

Vuekieh: Dah njieljie biehkiegoerehtimmieh mah dennie tjaalegisnie ovmessie såarhth kvalitatijve designh utnieh. Individuellen gihtjedimmieh, fokusedåehkiedigkiedimmieh, dovne jorpebuertiesoptsestallemh jïh go-along digkiedimmieh ålkone vaeresne, jïh gihtjedimmieh gosse soptsestallemedïrregem DöBra-kåarhtine nuhtjin leah tjïrrehtamme. 82 almetjh, 25–84 jaepien båeries, leah meatan orreme, jeenjemesh saemieh. Dah almetjh leah båateme ovmessie geografijen sijjijste jïh gïeledajvijste, dovne voenijste jïh sjeltijste, jïh dej ovmessie barkoedååjrehtimmide jïh ööhpehtimmide utnin. Dovne ålmah jïh nyjsenæjjah lin meatan. Daatah leah vuekine Interpretive Description, Directed Content Analysis jïh Framwork Analysis joekehtahteme biehkiegoerehtimmine 1, 3 jïh 4. Narratijve analyjsem lea nuhtjeme daatajgujmie go-along digkiedimmijste.

Illedahke: Marköörh mah stïeres saemien identiteetem dåarjoeh stuaranïmmine, maadtoeh, gïele jïh aerpievuekien beapmoeh, leah sjïere vihkeles jielemen minngiegietjesne. (I, II). Jaepieboelhki jarkelimmieh jïh eatnemen tsiehkine saemien sealadimmieöörnegem tsevtsieh, jïh almetjh, sijjieh jïh tïjjh aktanieh guktie mahte ij maehtieh dejtie juekedh. (I, II). Aerpievuekien maahtoen tjïrrh materijellen jïh immaterijellen vierhtieh buektiehtamme soptsestallemi mietie, gusnie eatneme lij meatan soptsesem hammode (II). Saemien sjïere hammoeh dej vaajtelassh jiehtedh minngemes tïjjen jieliemisnie, vuesiehtimmie danXmïerhke aerpine vedtedh, tjuvtjede man vihkeles refleksjovne jïh digkiedimmie saemiej aarvoej jïh preferensi bïjre båetije jielemen minngiegeatjan (II). Soptsestallemedïrrege, DöBra-kåarhth, mij gellie almetjidie gïeh meatan skreejrieh soptsestidh guktie dah ussjedin jïh vaajtelin jis hoksem daarpesjidh jielemen minngiegietjesne jïh dej båetije sealadimmesne, dah kåarhth vuajnoej buektieh seamma kåarhtejiehtege maahta ovmessie vuekine toelhkestidh, ovmessie almetjijstie jïh dan mietie persovnensentreereme hoksem dåarjodh. Dah jïjtjevyljehke kåarhth daamhtaj nuhtjin gosse vaajtelassh tjïelkestidh mah lin ektesne saemien identiteetem jïh kultuvrem gorredidh (III). Dååjrehtimmieh hokseste jielemen minngiegietjesne vuesiehtieh dåarjoe dovne formelle jïh informelle öörnegijstie edtja meatan årrodh ektievoetem domtedh kollektijve daltesisnie (IV). Maadtoe saemien tsiehkine jielemen minngiegietjesne vuesehte gamte viermiem guhkies åeksiejgujmie. Daate viermie jåhta goh sosijaale organisatovreles öörnege jïh dåarjoe gusnie dah tjïelke råållah jïh dïedth utnieh. Dejnie viermine maahta stoerre låhkoeh vierhtieh aktiviseeredh. Daate vijries öörnege almetjigujmie gïeh saemien jïh jienebelåhkoesïebredahkine ektiedidh, lea vihkeles gosse maam daamhtaj gohtje “informelle” hokseöörnege jïh formelle hokse- jïh såjhtoeöörnegh ektiedidh. Vaenie mohte maaje neavroem krööhkestamme goh dåarjohts maadtojste, dåarjohts aaj formelle hokse- jïh såjhtoeöörnegijstie, jïh aaj vaenie ektiedimmieh gusnie maahta saemiengïelem nuhtjedh, neebnesovvin goh gïerve jielemen minngiegietjesne.

Digkiedimmie: Våaroeminie vijrebe hoksem evtiedidh saemiej jielemen minngiegietjesne maahta goerkesem saemien sealadimmieöörnegistie årrodh akte dejstie vihkielommes biehkijste. Maahtoe aerpievuekiej jïh aerpievuekien maahtoej bïjre dan sisnie. Interaksjovnem evtiedidh dåarjojne formellen öörnegijstie guktie saemien sïebredahkem kompletteeredh gïerve tsiehkine, goh jielemen minngiegietjesne, maahta haestemh vååjnedh mohte aaj nuepieh vedtedh. Almetjh gorredidh gïeh maehtieh svaalhtesh årrodh jienebelåhkoesïebredahken jïh saemien sïebredahken gaskem lea akte vuesiehtimmie. Vuerkies årrodh jïh kultuvrem krööhkedh ektesne kulturellen vihtiesvoetem vadta, jearsoes hoksine saemide jielemen minngiegietjesne.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2021. , p. 82
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2126
Keywords [sv]
arktis, kvalitativ metod, palliativ vård, renskötare, traditionell kunskap, samer, urfolksmetodologier, vård i livets slut
National Category
Nursing
Research subject
caring sciences in social sciences; Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-182772ISBN: 978-91-7855-530-7 (electronic)ISBN: 978-91-7855-531-4 (print)OAI: oai:DiVA.org:umu-182772DiVA, id: diva2:1549042
Public defence
2021-05-28, Glesbygdsmedicinskt centrum, Storuman, 13:00 (Swedish)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4071Available from: 2021-05-07 Created: 2021-05-04 Last updated: 2021-08-17Bibliographically approved
List of papers
1. The past is present: Death systems among the Indigenous Sámi in Northern Scandinavia today
Open this publication in new window or tab >>The past is present: Death systems among the Indigenous Sámi in Northern Scandinavia today
2020 (English)In: Mortality, ISSN 1357-6275, E-ISSN 1469-9885, Vol. 25, no 4, p. 470-489Article in journal (Refereed) Published
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. 

Place, publisher, year, edition, pages
Routledge, 2020
Keywords
Culture; death systems; end-of-life care; Indigenous; Kastenbaum; Sámi; Arctic
National Category
Medical and Health Sciences
Research subject
health services research
Identifiers
urn:nbn:se:umu:diva-167910 (URN)10.1080/13576275.2020.1715359 (DOI)000704602800006 ()2-s2.0-85078439729 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4071
Available from: 2020-02-06 Created: 2020-02-06 Last updated: 2023-09-05Bibliographically approved
2. Using narrative analysis to explore traditional Sámi knowledge through storytelling about End-of-Life
Open this publication in new window or tab >>Using narrative analysis to explore traditional Sámi knowledge through storytelling about End-of-Life
2020 (English)In: Health and Place, ISSN 1353-8292, E-ISSN 1873-2054, Vol. 65, article id 102424Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Elsevier, 2020
Keywords
Culture, death systems, go-along discussions, Qualitative research, Focus groups, Indigenous, Kastenbaum, Sámi, Arctic
National Category
Nursing Ethnology
Research subject
caring sciences in social sciences; Ethnology
Identifiers
urn:nbn:se:umu:diva-174804 (URN)10.1016/j.healthplace.2020.102424 (DOI)000573801300008 ()2-s2.0-85090051869 (Scopus ID)
Projects
DöBra: Samer och vård i livets slutskede
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4071
Available from: 2020-09-08 Created: 2020-09-08 Last updated: 2021-05-04Bibliographically approved
3. Values and preferences for future end-of-life care among the Indigenous Sámi
Open this publication in new window or tab >>Values and preferences for future end-of-life care among the Indigenous Sámi
Show others...
2022 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 2, p. 504-514Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2022
Keywords
Public Health, Environmental and Occupational Health, advance care planning, DöBra cards, end of life, ethnic groups, go wish cards, go-wish cards, indigenous, Sámi
National Category
Nursing
Research subject
caring sciences in social sciences
Identifiers
urn:nbn:se:umu:diva-182085 (URN)10.1111/scs.13047 (DOI)000723058500001 ()34841544 (PubMedID)2-s2.0-85119981637 (Scopus ID)
Funder
The Dementia Association - The National Association for the Rights of the DementedVårdal FoundationForte, Swedish Research Council for Health, Working Life and Welfare, 2014‐4071
Available from: 2021-04-08 Created: 2021-04-08 Last updated: 2022-08-04Bibliographically approved
4. A salutogenic perspective on end-of-life care among the Indigenous Sámi of Northern Fennoscandia
Open this publication in new window or tab >>A salutogenic perspective on end-of-life care among the Indigenous Sámi of Northern Fennoscandia
2021 (English)In: Healthcare, E-ISSN 2227-9032, Vol. 9, no 6, article id 766Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
MDPI, 2021
Keywords
indigenous research; salutogenesis, end-of-life, ethnic groups, Sámi, Sweden, sense of community coherence
National Category
Nursing
Research subject
caring sciences in social sciences
Identifiers
urn:nbn:se:umu:diva-182084 (URN)10.3390/healthcare9060766 (DOI)000666494600001 ()34205402 (PubMedID)2-s2.0-85109079166 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4071
Note

Previously included in thesis in manuscript form

Available from: 2021-04-08 Created: 2021-04-08 Last updated: 2021-08-12Bibliographically approved

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