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A Population-Based Study on Health and Living Conditions in Areas with Mixed Sami and Norwegian Settlements Б the SAMINOR 2

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A Population-Based Study on Health and Living Conditions in Areas with Mixed Sami and Norwegian Settlements Б the SAMINOR 2 æ ORIGINAL RESEARCH ARTICLE A population-based study on health and living conditions in areas with mixed Sami and Norwegian settlements Á the SAMINOR 2 questionnaire study Magritt Brustad1*, Ketil Lenert Hansen1, Ann Ragnhild Broderstad1,2, Solrunn Hansen1 and Marita Melhus1 1Centre for Sami Health Research, Department of Community Medicine, UiT The Arctic University of Norway, Tromsø, Norway; 2Department of Medicine, University Hospital of Northern Norway, Harstad, Norway Objectives. To describe the method, data collection procedure and participation in The Population-based Study on Health and Living Conditions in Areas with both Sami and Norwegian Settlements Á the SAMINOR 2 questionnaire study. Study design. Cross-sectional and semi-longitudinal. Methods. In 2012, all inhabitants aged 18Á69 and living in selected municipalities with both Sami and Norwegian settlements in Mid and Northern Norway were posted an invitation to participate in a questionnaire survey covering several topics related to health and living conditions. The geographical area was similar to the area where the SAMINOR 1 study was conducted in 2003/2004 with the exception of one additional municipality. Participants could alternatively use a web-based questionnaire with identical question and answer categories as the posted paper version. Results. In total, 11,600 (27%) participated (16% used the web-based questionnaire), with a higher participation rate among those over 50 (37% for women and 32% for men). Some geographical variation in participation rates was found. In addition, for those invited who also participated in the SAMINOR 1 study, we found that the participation rates increased with the level of education and income, while there was little difference in participation rates across ethnic groups. Conclusion. The knowledge generated from future theme-specific research utilizing the SAMINOR 2 database has the potential to benefit the general population in this geographical area of Norway, and the Sami people in particular, by providing knowledge-based insight into the health and living conditions of the multi-ethnic population in these parts of Norway. Keywords: Sami; epidemiology; ethnicity; health; Arctic *Correspondence to: Magritt Brustad, Centre for Sami Health Research, UiT The Arctic University of Norway, NO-9037 Tromsø, Norway, Email: [email protected] Received: 23 October 2013; Revised: 28 March 2014; Accepted: 19 May 2014; Published: 18 June 2014 ami, Kven and Norwegian populations have and Norwegian Populations Á The SAMINOR Study was traditionally inhabited Northern Norway. The conducted in 2003/2004 (1) by the Centre for Sami Health SSAMINOR study was designed to provide more Research, Department of Community Medicine, UiT The information about this multi-ethnic population, particu- Arctic University of Norway in collaboration with the larly in relation to the Sami people living in Northern Norwegian Institute of Public Health, with support from Norway. the Norwegian Ministry of Health and Care Services. The The Sami are an indigenous people primarily living data were collected in a cross-sectional epidemiological in the northern parts of Norway, Sweden, Finland and design in which all inhabitants in the selected areas aged the Kola Peninsula in Russia. There is no direct means to 30 or between 36 and 79 were invited. In total, 16,968 estimate the number of Sami in Norway, although it is participated, of whom approximately 35% reported a assumed that Norway has the largest proportion of the Sami affiliation. The SAMINOR 1 study consisted of total Sami population. The first Population-based Study questionnaire data, clinical measures and a biobank, and on Health and Living Conditions in Areas with Both Sami is described in detail elsewhere (1). The SAMINOR 1 International Journal of Circumpolar Health 2014. # 2014 Magritt Brustad et al. This is an Open Access article distributed under the terms of the Creative 1 Commons CC-BY 4.0 License (http://creativecommons.org/licenses/by/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license. Citation: Int J Circumpolar Health 2014, 73: 23147 - http://dx.doi.org/10.3402/ijch.v73.23147 (page number not for citation purpose) Magritt Brustad et al. study enabled the achievement of systematic and population- based knowledge related to selected aspects of the health and living conditions of the Sami population (2Á15); such knowledge was scarce or lacking before this study was initiated. The reasoning for a SAMINOR 2 study was mainly 2-fold: (a) the motivation to conduct a follow-up with the methodological benefits of a longitudinal design and (b) the introduction of new themes not included in SAMINOR 1. Our aim in this paper has been to describe the method, data collection procedure and participation in the SAMINOR 2 questionnaire study. Methods and material The data collection for the SAMINOR 2 study was divided into 2 steps: (a) a questionnaire-based study and (b) a clinical study including a questionnaire. This paper covers the first step, that is, the questionnaire-based data collection, referred to as the SAMINOR 2 questionnaire study. Sample The target population for the survey was all inhabitants aged 18Á69 registered in the Norwegian National Popula- tion Register by 1 December 2011 and selected from the same areas where the first SAMINOR study was carried out in 2003/2004, in addition to Sør-Varanger in eastern Finnmark. This meant that inhabitants in the following Fig. 1. Investigation area of the SAMINOR 2 questionnaire 25 municipalities were included (in some cases, only a part study. of the municipality was included, and indicated here in brackets): Sør-Varanger, Nesseby, Tana, Lebesby, Karasjok, Porsanger, Kvalsund, Loppa, Alta, Kautokeino, Kvænagen, 2003/2004 SAMINOR data collection. This was done Ka˚fjord, Storfjord, Lyngen, Lavangen, Ska˚nland, Evenes, in order to be able to compare certain selected health Narvik (Vassdalen), Tysfjord, Hattfjelldal (Hattfjelldal), and living condition variables across the period be- Grane (Majavatn), Namskogen (Trones and Furuly), tween the 2 studies. The questions regarding ethnicity Røyrvik, Sna˚sa (Vinje) and Røros (Brekken) (Fig. 1). In were among those that were the same as the questions total, 44,669 individuals were invited to participate. used in the first data collection, including family back- ground, home language in 3 generations and self-perceived Questionnaire ethnicity (1). The questionnaire and the information material were In addition, a selection of questions was repeated from written in Norwegian, but also translated into 3 relevant the first SAMINOR study, including some related to Sami languages, Northern, Lule and Southern Sami, by physical and mental health and socio-economic and living professional translators. Information letters were sent out conditions. However, the majority of the questions in the to all in Norwegian and in the Sami language relevant to questionnaire were not included in the first SAMINOR the area. The Norwegian questionnaire was sent to all and study. These new questions were included to enable a translated version in the relevant Sami language was also assessment of new and relevant research questions, which included for those living in the Administrative Area for the was not possible based on the data from the former survey, Sami Language (Nesseby, Tana, Karasjok, Porsanger, but in line with the fields of interest of the researchers Kautokeino, Ka˚fjord, Lavangen, Tysfjord, Røyrvik and involved in the project. Sna˚sa). In brief, the questionnaire had questions on self- After contributions were received from collaborating perceived health and selected diseases, as well as health- researchers from various fields, the questionnaire was related conditions (‘‘The EQ-5D Health-Related Quality coordinated and finalized by the SAMINOR study board. of Life Questionnaire’’), socio-economic status, physical The questionnaire was 8 pages long and contained a set activity, height and weight, family and language back- of questions corresponding to the questions used in the ground, mental health (‘‘The Hopkins Symptom Checklist, 2 Citation: Int J Circumpolar Health 2014, 73: 23147 - http://dx.doi.org/10.3402/ijch.v73.23147 (page number not for citation purpose) The SAMINOR 2 study Table I. Participation by age and gender: the SAMINOR 2 or HSCL-10,’’ ‘‘WHO-5 Well-being Index’’ and ‘‘The questionnaire study (n11,600) Resilience Scale for Adults, or RSA’’), tobacco and drug/ alcohol use, use of hypnotics, religion, discrimination, Age (years) Sample Participants % violence and abuse, oral/dental health, suicide, gambling Males 18Á19 966 100 10.4 and health care service-related experiences, including the use of a Sami-speaking interpreter. Thus, the question- 20Á29 3,987 426 10.7 naire covered a broad range of research topics, and a 30Á39 3,778 680 18.0 variety of formerly used questions (from comparable 40Á49 4,876 1,096 22.5 surveys) but also new questions. 50Á59 4,592 1,339 29.2 It is beyond the scope of this paper to go in detail 60 69 4,366 1,508 34.5 Á regarding the different questions, their validity, former Total men 22,565 5,149 22.8 use, and so on. However, we do anticipate and recommend Females 18Á19 844 173 20.5 thorough descriptions of these specific methodological 20Á29 3,610 785 21.8 issues when results from thematic research projects based 30Á39 3,586 965 26.9 on the SAMINOR data are communicated in the future. 40Á49 4,586 1,548 33.8 50Á59 4,236 1,594 37.6 Logistics 60Á69 3,818 1,386 36.3 The invited individuals were sampled by Statistics Total women 20,680 6,451 31.2 Norway, and each participant was assigned a unique ID code that was pre-printed on the questionnaire. Statistics All 43,245 11,600 26.8 Norway administrates and stores the code for future Sami affiliation1 (n=3,928) Self-perceived Sami2 (n=2,321) 118 (3%) 1,0975 (28%) 805 (20%) 26 (1%) 1,372 (35%) 420 (11%) 42 (1%) 48 (1%) Sami ethnic background3 (n=2,645) Sami as home language4 (n=1,488) Fig.
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