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Objectives: Despite increasing research interest in the health and well-being of the Indigenous Sámi people, knowledge remains fragmented and insufficient. The HALDI study aims to examine health status, well-being, and associated determinants within a multi-ethnic context, focusing on the Sámi people in Sweden. This protocol outlines the study’s objectives, design, and methodology, with the goal of generating representative data to inform future research, policy, and interventions targeting Sámi health.

Design: To ensure relevance, initial focus groups discussions identified key health issues for the Sámi people in Swedish Sápmi. Based on these findings, a comprehensive questionnaire was developed, encompassing socioeconomic status, ethnicity, psychiatric and somatic disorders, and self-perceived health. All adults in Jokkmokk municipality (n = 4077) were invited to participate. The following year, a clinical examination was conducted, including measures such as blood pressure, pulse, height, weight, blood sampling, and an updatet questionnaire on health status, dietary habits, and, for those aged 65 years and above, assessments of frailty and cognition. A total of 1682 individuals (41%) responded to the first questionnaire; 68% identified as Swedish, 22% as Sámi, and 7% with other ethnic identities. In the clinical study, 706 participated with similar ethnic proportions.

Conclusion: This is the first study in Sweden to incorporate ethnic self-identification in a multi-ethnic population. By presenting the study protocol and sample characteristics, we highlight the potential for future analyses to inform evidence-based health interventions and policy to improve outcomes for the multi-ethnic Arctic population.

Background and objectives: Cardiovascular disease contributes significantly to disease burden among many Indigenous populations. However, data on stroke incidence in Indigenous populations are sparse. We aimed to investigate what is known of stroke incidence in Indigenous populations of countries with a very high Human Development Index (HDI), locating the research in the broader context of Indigenous health.

Methods: We identified population-based stroke incidence studies published between 1990 and 2022 among Indigenous adult populations of developed countries using PubMed, Embase, and Global Health databases, without language restriction. We excluded non-peer-reviewed sources, studies with fewer than 10 Indigenous people, or not covering a 35- to 64-year minimum age range. Two reviewers independently screened titles, abstracts, and full-text articles and extracted data. We assessed quality using "gold standard" criteria for population-based stroke incidence studies, the Newcastle-Ottawa Scale for risk of bias, and CONSIDER criteria for reporting of Indigenous health research. An Indigenous Advisory Board provided oversight for the study.

Results: From 13,041 publications screened, 24 studies (19 full-text articles, 5 abstracts) from 7 countries met the inclusion criteria. Age-standardized stroke incidence rate ratios were greater in Aboriginal and Torres Strait Islander Australians (1.7-3.2), American Indians (1.2), Sámi of Sweden/Norway (1.08-2.14), and Singaporean Malay (1.7-1.9), compared with respective non-Indigenous populations. Studies had substantial heterogeneity in design and risk of bias. Attack rates, male-female rate ratios, and time trends are reported where available. Few investigators reported Indigenous stakeholder involvement, with few studies meeting any of the CONSIDER criteria for research among Indigenous populations.

Discussion: In countries with a very high HDI, there are notable, albeit varying, disparities in stroke incidence between Indigenous and non-Indigenous populations, although there are gaps in data availability and quality. A greater understanding of stroke incidence is imperative for informing effective societal responses to socioeconomic and health disparities in these populations. Future studies into stroke incidence in Indigenous populations should be designed and conducted with Indigenous oversight and governance to facilitate improved outcomes and capacity building.

The prevalence of interpersonal violence has been reported at higher levels among Indigenous than non-Indigenous populations worldwide, but has not been thoroughly investigated among the Sámi population in Sweden. The aims of this study were to investigate: (1) the prevalence of emotional, physical, and sexual violence and violence by intimate partners, family members, acquaintances, and strangers among participants identifying as Sámi or Swedish, (2) whether reporting experiences of historical losses and discrimination mediated the anticipated association between identifying as Sámi and reporting experiences of violence, and (3) whether background characteristics were associated with reporting experiences of violence. Cross-sectional questionnaire data collected in 2021 for the “Health and Living conditions in Sápmi” study were used. All adults in an arctic region in Sweden were invited to participate (response rate: 41%). Respondents self-identifying as Sámi (n = 375; 24.7%) or Swedish (n = 1,144; 75.3%) were included in this study. Sámi respondents of both sexes more often reported violence by an acquaintance or stranger. Likewise, more Sámi than Swedish women reported family violence (16.4% vs. 9.2%), but there was no difference concerning intimate partner violence (13.3% vs. 15.4%). Mediation analyses revealed strong positive indirect effects of historical losses and discrimination on the different types of violence. Being female was the strongest predictor of reporting intimate partner violence, and younger age was associated with violence by all perpetrators except family members. In conclusion, interpersonal violence was more often reported by Sámi respondents, but the association was explained in full by experiences of historical losses and discrimination. The results underline the importance of a life-course and even intergenerational and historical perspectives when investigating interpersonal violence.

Dementia is a health priority for Indigenous peoples. Here, we reviewed studies on the prevalence of dementia or cognitive impairment among Indigenous populations from countries with a very high Human Development Index (≥0·8). Quality was assessed using the Joanna Briggs Institute risk-of-bias tool and CONSolIDated critERia for strengthening the reporting of health research involving Indigenous peoples (CONSIDER), with oversight provided by an Indigenous Advisory Board. After screening, 23 studies were included in the Review. Relative to the respective non-Indigenous populations, greater age-standardised prevalence ratios were observed in the Australian Aboriginal and Torres Strait Islander (2·5–5·2), Aotearoa-New Zealand Māori (1·2–2·0), and Singaporean Malay (1·3–1·7) populations, and greater crude prevalence ratios were observed in the Canadian First Nation (1·3), Singaporean Malay (2·3), Malaysian Melanau (1·7–4·0), American Indian and Alaska Native (1·0–3·2), and Chamorro of Guam (1·2–2·0) populations. The prevalence ratios were greater across younger age groups, predominantly comprising those younger than 70 years. 14 studies presented a moderate risk of bias and few studies reported Indigenous involvement. Despite improved management of risk factors, a greater prevalence of dementia persists in Indigenous populations, overall and at younger ages than in non-Indigenous populations. Future epidemiological work involving Indigenous populations should uphold and prioritise Indigenous perspectives.

Background: While equity in health care is the core of the Swedish health system, social inequalities in accessing health care, particularly regarding dental care, exist. There is however no information on how the Sámi population is affected. This study aimed to assess the prevalence and risk factors for refraining from seeking dental care among the Sámi in Sweden.

Methods: A Sámi sample was constructed from three pre-existing registers. Among the 9,249 invitations for individuals aged 18–84 years old, 3,779 answered the survey during February–May 2021. We first calculated frequencies and proportions of the independent variables in terms of socio-economic, socio-demographic, and cultural-related factors as well as the outcome, refraining from dental care. Then, we summarized the magnitude of the association between the independent variables and self-reported refrain from dental care with the prevalence difference (PD) using the 95% confidence interval (95% CI) for inferential purposes.

Results: Overall, 17.5% of the participants refrained from seeking dental care despite self-reported need in the last three months, with almost the same proportion between men and women. Among the socio-demographic factors, being in the 30–44 years group (PD = 8.0; 95% CI: 3.59, 12.48), in the 45–64 group (PD = 7.3; 95% CI: 2.96, 11.61) and in the 65–84 group (PD = 5.4; 95% CI: 0.92, 9.78) as well as being divorced/widow-er (PD = 6.7; 95% CI: 2.73, 10.70) and unmarried (PD = 3.1; 95% CI: 0.23, 6.04) were statistically significantly associated with refraining from seeking dental care. Among the socio-economic variables, those in the middle-income quintile (PD = 5.3; 95% CI: 1.28, 9.35), in the poor (PD = 8.1; 95% CI: 3.64, 12.51) and poorest (PD = 8.0 95% CI: 3.48, 12.50) quintiles, and especially those experiencing economic stress once (PD = 9.2; 95% CI: 2.93, 15.48) and several times (PD = 26.5; 95% CI: 19.50, 33.43), were strongly associated with refraining.

Conclusions: Approximately one in six of the Sámi participating in this study refrained from seeking dental care despite self-reported need in the last three months. Those who experienced economic difficulties were the most affected group. To achieve equity in dental health care in Sweden, policies removing economic barriers to access dental health care should be implemented.

Objectives: To investigate the prevalence of poor self-reported oral health and to identify socio-demographic, socio-economic and cultural-related risk factors associated with poor oral health among Sámi in Sweden.

Methods: A Sámi sample frame was constructed drawing from three pre-existing registers. All identified persons aged 18–84 were invited to participate in the study during February–May 2021. Among the 9249 invitations, 3779 answered the survey. The frequencies of the independent variables in terms of socio-economic, socio-demographic and cultural-related factors as well as the outcome, self-reported oral health, were calculated first. Prevalence ratios (PRs) and their 95% confidence interval (95% CI) were estimated to assess the relationship between the independent variables and the outcome.

Results: Overall, 32.5% of the participants reported a poor oral health with a higher prevalence among men compared to women. Among the socio-demographic factors, being old (PR: 1.99; 95% CI: 1.59–2.51), unmarried (PR: 1.17; 95% CI: 1.03–1.33) and divorced or widow-er (PR: 1.27; 95% CI: 1.09–1.46) were statistically associated to poor self-reported oral health. Among the socio-economic factors, a low education level (PR: 1.56; 95% CI: 1.29–1.89), belonging to the poorest quintile (PR: 1.63; 95% CI: 1.35–1.96), and experiencing difficulties to make ends meet several times during the last 12 months (PR: 1.74; 95% CI: 1.51–1.99) were statistically significant related to poor oral health.

Conclusions: The self-reported oral health among Sámi in Sweden appears to be worse than that of the general Swedish population. Several socio-economic and socio-demographic factors were found to be strongly associated with poor self-reported oral health. Targeted interventions addressing these social determinants are needed to reduce inequalities in oral health among the Sámi population.

En sammanfattning av rapporten finns på svenska, nord- och lulesamiska. En sydsamisk översättning utgår på grund av återbud med kort varsel där ingen ersättare kunnat hittas inom tidsfristen. 

Syfte: Fokusgruppstudiens syfte var att möjliggöra för samer att delta i öppna samtal om hälsotillstånd och hur levnadsvillkor och livsstil kan påverka hälsan och att låta denna kunskap berika utformningen av en enkät och en klinisk studie om hälsotillstånd som nästa steg av HALDI-studien.

Metod: Elva fokusgrupper med samiska deltagare geografiskt fördelade från södra delarna till norra delarna av Sápmi genomfördes under hösten 2018-våren 2019. Deltagarnas ålder sträcker sig från 23-77 år, med en medelålder på 53 år. Två över-gripande frågeområden avhandlades vid fokusgruppdiskussionerna; samisk hälsa och hälsoforskning med fokus på samernas hälsa. Samtalen ljudinspelades och transkriberades till text. Texterna analyserades av tre oberoende forskare med hjälp av kvalitativ innehållsanalys.

Resultat: Deltagarna beskriver en holistisk syn på hälsa, det vill säga att allt hänger samman. De lägger stor vikt vid upplevelser/tillstånd av andlighet, vistelsei naturen, fysisk aktivitet och harmoni för att uppnå en god hälsa. Andligheten kopplas inte samman med religion utan förknippas starkt med naturen. Det framkom att en kulturell norm ”ieš birget” kan påverka benägenheten att söka vård. Denna norm innebär en strävan efter att klara sig själv, att vara stark, inte visa sig svag och att inte belasta andra med problem. I fokusgruppdiskussionerna framkom även att det både är svårt och ovanligt att öppet prata om psykisk ohälsa och missbruksproblematik. Detta kan på sikt påverka hälsan och benägenhet att söka vård negativt. Deltagarna har negativa erfarenheter av bristfällig kulturförståelse och okunskap om samiska livsvillkor i mötet med hälso- och sjukvården. Utsatthet i form av diskriminering, rasism och okunskap om samisk historia och samiska livsvillkor framkommer som vanligt förekommande och beskrevs vara en risk för ohälsa och ansågs ha en negativ inverkan på hälsotillståndet. Det uttrycktes skepsis och misstroende mot forskning generellt. Detta grundades på upplevelse av brist på delaktighet, bristfällig information och utebliven återkoppling av resultat men även på historiska erfarenheter kopplade till bland annat rasbiologi. Samtidigt påtalades att ökad kunskap avseende samernas hälsa behövs och därför ansåg deltagarna att det ändå var viktigt att delta i forskningsstudier. Vikten av att tydliggöra forskningens syfte och dess nytta betonades särskilt.

Slutsatser: Fokusgruppstudien har gett värdefulla bidrag om viktiga forskningsområden och hur kommande hälsostudier som involverar samisk befolkning bör utformas och genomföras. Det går att konstatera att inom samisk hälsoforskning i Sverige finns många områden som går att förbättra och tydlig-göra exempelvis kring etik, information, återkoppling, datahantering och utformning av studier 

Forskningen rörande samisk hälsa har de senaste två decennierna ökat avsevärt och bit för bit börjat förbättra ett fragmentariskt kunskapsläge. Det kan också sägas om det internationella forskningsområdet urfolkshälsa (Indigenous Health), där samisk hälsoforskning ofta hämtar jämförelser och inspiration. Vi önskar med detta temanummer väcka intresse för den samiska befolkningens hälsa och sätta ljus på den pågående samiska hälsoforskningen. Temanummret innehåller sammanlagt fem peer-review granskade originalartiklar, två översiktsartiklar och tre recensioner. Välkomna till det första temanumret om samisk hälsoforskning!

Forskningen rörande samisk hälsa har de senaste två decennierna ökat avsevärt och bit för bit börjat förbättra ett fragmentariskt kunskapsläge. Det kan också sägas om det internationella forskningsområdet urfolkshälsa (Indigenous Health), där samisk hälsoforskning ofta hämtar jämförelser och inspiration. Vi önskar med detta temanummer väcka intresse för den samiska befolkningens hälsa och sätta ljus på den pågående samiska hälsoforskningen. Temanumret innehåller sammanlagt fem peer-review granskade originalartiklar, två översiktsartiklar och tre recensioner. Välkomna till det första temanumret om samisk hälsoforskning!

Indigenous Data Sovereignty is increasingly discussed in CANZUS countries but not as much in the Nordic countries, mostly due to Nordic prohibitions of the collection of ethnicity data. This chapter reports the first study on how the Sami people in Sweden perceive Indigenous control and ownership of Sami health research data. Results show that data and data management are important with preference for Sami authorities, preferably the Sami Parliament to take responsibility of data. However, doubts were expressed on the capacity of the Sami Parliament to undertake a data repository role. The study also shows that the legacy of the Nazi regime, of racial biology and of colonization is still present in discussions on Indigenous data and adds to the lack of trust between the Sami and the Swedish nation state.