Sami family caregivers’ experiences with accessing and collaborating with municipal health and care services

Our results demonstrate the need for active outreach services, for more explicit distribution of responsibilities, and for authentic partnerships between public care services and family caregivers.

Background: Previous research has indicated that indigenous Sami families in Norway use public home-based care services less often than their non-Sami peers. However, little is known about the situation of Sami family caregivers, particularly about family caregivers for older adults with dementia. We aimed to explore what Sami family caregivers experience as barriers to accessing public care services for older adults living with dementia, and how Sami family caregivers experience collaboration with care service providers and their own role as family caregivers.

Methods: The study is based on qualitative interviews with Sami family caregivers in five municipalities in Northern Norway included in the area of administration of the Sami Language Act.

Results: Through a reflexive thematic approach, we identified that rather than a cultural norm of 'taking care of one’s own’, the underuse of public care services among Sami families were related to several intertwined circumstances. The Sami family caregivers reported barriers to accessing public care, such as lack of familiarity with the services and cultural and language concerns and the legacy of history, and drivers for continuing family care, such as blurred distribution of responsibility, lack of continuity of care, and culturally unsafe caring environments and marginalizing practices.

Conclusions: While it has been assumed in both policy papers and previous research that Sami people prefer to ‘take care of their own’, this study indicates that this assumption is wrong. Our results demonstrate that the underuse of public care services among Sami families may be explained by a number of intertwined circumstances.