Purpose
The main objective of SAMINOR 3 is to enhance knowledge of health and living conditions in the Sami, Kven and Norwegian populations in selected areas of northern and central Norway. Important topics in SAMINOR 3 will be the major lifestyle diseases such as diabetes and cardiovascular disease and various topics related to mental health and quality of life.
A further objective of SAMINOR 3 is to improve the user perspective by involving the invited population in the research. This will be done by 1) interviewing individuals and groups about important topics to include in a questionnaire, and 2) inviting groups of people from different geographical areas to participate in planning, implementation and finally publication, which is known as participatory research.
The interview study
The first part of SAMINOR 3 is a qualitative interview study. We invite people from different geographical areas and different ethnic backgrounds to participate in individual interviews or in group interviews with 5-6 others, i.e. focus group interviews. The interview study explores what the people themselves think is relevant in studying health and living conditions, and thus what they believe a health survey in their area should focus on. Participants can choose to be interviewed in Sami, Kven/Finnish or Norwegian.
In the interview study, participants themselves decide how much they want to talk about the different topics. Researchers must treat sensitive topics with respect. We know that interviewees may be reminded of difficult and stressful events. They may be emotionally affected by talking about difficult topics during or after the interview. We have therefore arranged for the Sámi Norwegian National Advisory Unit on Mental Health and Substance Use (SANKS) to provide free, low-threshold consultations to any participant who wants it after the interviews. The consultations from SANKS are for everyone, regardless of their ethnicity.
The results from the interview study will be used to formulate even better and more relevant questions for the questionnaire in the comprehensive survey of health and living conditions of SAMINOR 3. This ensures that members of the population themselves can help to determine the research questions to be emphasized. The interviews will also be used for qualitative research to provide knowledge about the views of the multi-ethnic population on topics related to health and living conditions.
The survey of health and living conditions
Sápmi extends over a large area where the inhabitants speak different languages and have different ethnicities. The northernmost part of Norway has for generations been an area where three ethnic groups meet; here Sami, Norwegians and Kvens/Finns have lived side by side with their different cultures, languages and lifestyles. In order to detect any differences in health and living conditions between ethnic groups in different areas, it is important to collect data from a large number of people from several geographical areas. Our plan is therefore to include about 40 municipalities in northern and central Norway in the SAMINOR 3 health and living conditions survey. These will include all the 25 municipalities that participated in SAMINOR 1 or 2. We plan to include all municipalities in Finnmark, at least 11 municipalities in Troms and 6-7 municipalities in Nordland, in addition to many South Sami areas.
The survey will include questionnaires, clinical measurements and blood sampling. We plan to invite around 80 000 people aged 40-79 years.
Photo: Jonatan Ottesen, Inger Dagsvold, Fotodama AS
User involvement in SAMINOR 3
User involvement in health research implies an equal partnership and collaboration between the researchers and the people being studied.
Participatory research is especially important to safeguard the right of indigenous and minority groups to influence the production of knowledge about themselves (“nothing about us without us”). Allowing the people being researched to be involved in the research will ensure that their perspectives and views are presented in an ethical manner.
For example, earlier research on the Sami was characterized by a view of indigenous peoples as an inferior race. Researchers measured the skulls of living Sami and removed skeletal material from Sami graves to find evidence that the Sami were a primitive, less intelligent race. Today, the Sami Parliament’s ethical guidelines for Sami health research state that the relationship between researchers and Sami communities/informants must involve respect, reciprocity, equality, cultural safety and Sami self-determination.
User involvement and collaboration with local communities are key aspects of the planning and implementation of SAMINOR 3. The Centre for Sami Health Research emphasizes the principle of community-based participatory research, which involves close and equal collaboration and partnership between researchers and the people being researched. We wish to involve the people living in the municipalities studied throughout the research process, from the idea stage, design and methodology, through data collection and interpretation of results, and as far as the final reporting and dissemination.
The people will be involved in developing knowledge about what they feel are the main topics to be included in research on their health and living conditions. Identifying and taking into account their experiences and views may lead to knowledge that is more useful. This can then improve the populations health and the health services in the area. Close collaboration with the people being researched is of great importance for the success of health research.
In SAMINOR 3 we focus on three forms of participatory research:
The organisation of user involvement in SAMINOR 3.
SAMINOR 3 involve several forms of participatory research:
- Sami collective consent from the Sami Parliament, administered by The Expert Ethics Committee for Sami Health Research. Sami collective consent concern admittance to perform health research involving the Sami population, Sami human biological material, or where Sami language, culture, tradition and / or history are included.
- The qualitative interview study “Stories about health” is the first part of SAMINOR 3. The qualitative study is considered as participatory research, since the interviews will identify what the multi-ethnic populations themselves experience as good health/a good life, health challenges and resilience factors, and good health services. The results will influence on the formulation of questions on health and living conditions in the SAMINOR 3 questionnaire.
- User groups in both the first and the main part of SAMINOR 3.
- Local user groups in the interview study. The interview study has established three local user groups where users, that is, members of the populations, are involved in the accomplishment of the interview study as well as the development of the questionnaire in the SAMINOR 3 survey.
- The SAMINOR 3 survey will establish a “SAMINOR 3 user group” consisting of members from the local user groups in the interview study, as well as key persons from some municipalities, the county administration, political representatives, health administration and health professionals, voluntary organizations and patient organizations.
- The SAMINOR 3 user group are involved in the accomplishment of the SAMINOR 3 survey as a whole. The users can advise the researchers, participate in information meetings, discussions prior to study and afterwards, and in presentation of results to the public.
- Users within academia and research. Research committees and reference groups will be established for research topics such as domestic violence and somatic/bodily health topics, alternative medicine nutrition, and others.
- Forthcoming users within milieus and institutions. Dialogue meetings will be held with persons and institutions of relevance along the way, e.g. public and political representatives, health administration and health professionals, voluntary organizations and/or patient organizations.
Communication and dissemination
Mutual understanding between researchers and participants/the local population is essential for research to benefit society. Good collaboration with various actors must be established even before data collection starts and must continue throughout the research process until the dissemination of the results. Work on communication and dissemination will thus be part of the methodology and is crucial for the research to have legitimacy in the communities where it is conducted. Good communication before and during data collection is also important to ensure high participation in the SAMINOR 3 survey of health and living conditions.
The Centre for Sami Health Research is keen to ensure that the results are shared with the communities where the research was conducted. Therefore, reports on the main results in each municipality will be prepared in collaboration with the municipality concerned, the relevant county council and participants.
Planned topics
Data on health and living conditions will be collected from questionnaires, clinical measurements (e.g. height, weight and blood pressure) and blood samples. Altogether, this will constitute a large database for researchers to use. Many different topics will be covered, and these will partly depend on previous research and findings, results from the interview study and input from various actors and partners.
SAMINOR 3 has the following main themes:
- Physical health and the factors affecting it
Here the main focus is on two major lifestyle diseases: diabetes and cardiovascular disease. Important influencing factors are smoking, diet and physical activity. Obesity, blood pressure and lipids (blood fats) are examples of health indicators that can indicate the risk of disease.
- Mental health and the factors affecting it
Relevant topics are symptoms of anxiety/depression and post-traumatic stress, eating problems and suicidal behaviour. Here, factors with a negative influence are violence, unemployment, bullying and discrimination, while good relations with family and friends can have a positive effect.
- Public healthcare services
Respondents will be asked how often they go to the doctor, whether they have been to hospital for treatment and how satisfied they are with the healthcare services and the treatment they receive. Further topics will be language problems in dealing with healthcare services and interpreting for Sami-speaking patients.
- The impact on public health of historical trauma and long-term Norwegianization policies
Prolonged Norwegianization policies and traumas after World War II have left a clear mark on the population of northern Norway. It is therefore of great interest to include the impact of these historical processes on people’s mental and physical health across generations.
Young SAMINOR
SAMINOR has until now concentrated on the adult section of the population. There have been other studies of young people, but these are either old, lack information about ethnicity or have few participants. We therefore felt that it would be useful to collect data on primary and secondary school pupils (Young SAMINOR), which can involve the same geographical areas as the adult part of SAMINOR 3.
Data collection plan
The collection of data on health and living conditions in SAMINOR 3 is planned to start in 2023-2024.
An overview of the three planned data collections in SAMINOR 3:
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Qualitative interview study
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Clinical examination
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YoungSAMINOR
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Years (tentative)
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2021-2022
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2023-2025
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2023-2025
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Age
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30 years and above
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40-79 years
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5th and 9th grades
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No. invited
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About 100
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About 80 000
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About 3500
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No. of municipalities
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Minimum 40
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Minimum 40
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Type of data collection
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Focus group and individual interviews
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Questionnaire
Clinical measurements
Blood samples
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Questionnaire
Clinical measurements
Blood samples
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