A Salutogenic Perspective on End-of-Life Care among the Indigenous Sámi of Northern Fennoscandia

Abstract

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.