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  • 1.
    Edin-Liljegren, Anette
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Centre for Rural Medicine, Primary Health Care, County Council of Västerbotten, Storuman, Sweden.
    Daerga, Laila
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. Umeå University, Faculty of Medicine, Department of Nursing. Centre for Rural Medicine, Primary Health Care, County Council of Västerbotten, Storuman, Sweden.
    Sahlén, Klas-Göran
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health. Umeå University, Faculty of Medicine, Department of Nursing.
    Jacobsson, Lars
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Psychosocial perspectives on working conditions among men and women in reindeer breeding in Sweden2017In: Journal of Northern Studies, ISSN 1654-5915, E-ISSN 2004-4658, Vol. 11, no 2, p. 31-47Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this project was to describe the work organisation in the Sami communities and in reindeer-herding work and to explore the range of female duties and compare how men and women experience their psychosocial working conditions.

    Design: A kind of intervention study was performed by means of a questionnaire sent out to 200 individuals from seven Sami communities. Questions were asked about work organisation, communication, personal relations, solitary work, support, participation and appreciation from colleagues and women's tasks. Meetings and discussions were held about what was perceived as being important in the life of the Sami communities. Notes from 16 group discussions were written down and analysed according to themes of topics relating to how men and women in the Sami communities experience their lives.

    Results: Communication and relations were described as being inadequate and some respondents experienced a heavy workload. The women reported more troubled relations, less participation in decision-making and less appreciation from colleagues. Positive issues reported were the Sami identity and a strong connection to the reindeer and to nature.

    Conclusions: This study indicates a need for a more systematic study of the psychosocial work conditions in the Sami communities in Sweden. Measures should be taken to develop the organisation of work, e.g. through developing communication strategies and conflict management, which has been requested by several Sami communities.

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  • 2.
    Edin-Liljegren, Anette
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sahlen, Klas-Göran
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jacobsson, Lars
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Daerga, Laila
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Reindeer-herding Sami experiences of seeking care in the mainstream society2016In: International Journal of Circumpolar Health, ISSN 1239-9736, E-ISSN 2242-3982, Vol. 75, no 33200Article in journal (Refereed)
  • 3.
    Ek, Charlott
    et al.
    Jokkmokks Healthcare Centre, Region Norrbotten, Jokkmokk, Sweden.
    Liljegren, Per-Daniel
    Primary Care, Region Västerbotten, Umeå, Sweden.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.
    Patients with cardiovascular disease revisiting specialist physicians via remote treatment: interview study of experiences2023In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 10, article id e43125Article in journal (Refereed)
    Abstract [en]

    Background: Access to health care for an aging population with growing needs presents major challenges in northern Sweden’s sparsely populated regions. Few people, the lack of professionals, and long distances make it difficult to provide health care on equitable terms according to the Swedish legislation. Remote treatment (RT) using information and communication technology has been suggested to overcome these difficulties, and person-centered care (PCC) is a desired philosophy to improve the quality of health care. However, there is scarce knowledge about how patients experience RT meetings.

    Objective: This study aimed to describe the experiences of patients with cardiovascular disease revisiting specialist physicians via RT guided by a PCC perspective in northern Sweden’s sparsely populated regions.

    Methods: A qualitative study was conducted based on interviews with 8 patients with cardiovascular disease revisiting their physician through RT, from a digital health room to a health care center or from a health care center to a hospital. The interviews were recorded, transcribed verbatim, and analyzed using inductive content analysis. The results are discussed from a PCC perspective.

    Results: The analysis resulted in 6 categories: good accessibility, safety with good relationships, proximity and distance with technology, habit and quality of the technology facilitating the meeting, cherishing personal integrity, and participation in own care. These categories were interpreted as the theme, participation and relationships are important for good and close care via RT.

    Conclusions: The study shows that participation and relationships are important for good and close care via RT. To improve the quality of an RT meeting, PCC can be applied but needs to be extended to the digital domain—electronic PCC, especially the communication component, as it is the most salient difference from a face-to-face meeting. Important factors that should be considered before, during, and after the RT meeting have been identified.

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  • 4.
    Jacobsson, Lars
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry. Umeå University, Arctic Research Centre at Umeå University.
    Fagerström, Anna
    Centre for Rural Medicine, County Council of Västerbotten, Umeå University, Umeå , Sweden.
    Daerga, Laila
    Centre for Rural Medicine, County Council of Västerbotten, Umeå University, Umeå , Sweden.
    Edin-Liljegren, Anette
    Centre for Rural Medicine, County Council of Västerbotten, Umeå University, Umeå , Sweden.
    Experiences of Psychiatric Care among Young Sami in Northern Sweden2016In: International Journal of Circumpolar Health, ISSN 1239-9736, E-ISSN 2242-3982, Vol. 75, no 33200Article in journal (Refereed)
  • 5.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. The Centre for Rural Medicine, Storuman, Sweden.
    Eneslätt, Malin
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Department of Health, Education and Technology, Luleå University of Technology, Luleå, Sweden.
    Tishelman, Carol
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services, Stockholm, Sweden.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. The Centre for Rural Medicine, Storuman, Sweden; LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    Values and preferences for future end-of-life care among the Indigenous Sámi2022In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 2, p. 504-514Article in journal (Refereed)
    Abstract [en]

    Intoduction: Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited.

    Aim: We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi.

    Methods: This qualitative study is based on interviews with 31 self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals’ card rankings were collated and compiled on group level to examine variation in card choices.

    Findings: All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card ‘to have those I am close to around me’. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death.

    Conclusions: The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden.

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  • 6.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Glesbygdsmedicinskt centrum, Storuman.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. Glesbygdsmedicinskt centrum, Storuman; Karolinska Institutet, LIME/Division of Innovative Care Research, Stockholm, Sweden .
    Tishelman, Carol
    Karolinska institutet, Stockholm.
    Using narrative analysis to explore traditional Sámi knowledge through storytelling about End-of-Life2020In: Health and Place, ISSN 1353-8292, E-ISSN 1873-2054, Vol. 65, article id 102424Article in journal (Refereed)
    Abstract [en]

    In this narrative study, we investigate salient Sámi-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sámi knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sámi peoples. Analysis illustrates how important material and immaterial cultural values are transferred across generations through their connection to people, place, and time—nature-bound as opposed to calendar-bound— objects, and symbols in relation to end-of-life issues. We found that the environment both shaped storytelling and became part of the stories themselves.

  • 7.
    Kroik, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. The Center for Rural Medicine, Region Västerbotten, Storuman, Sweden.
    Tishelman, Carol
    LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden; Stockholm Health Care Services, Stockholm, Sweden.
    Stoor, Krister
    Umeå University, Faculty of Arts, Várdduo – Centre for Sámi Research. Umeå University, Faculty of Arts, Department of language studies.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. The Center for Rural Medicine, Region Västerbotten, Storuman, Sweden; LIME/Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    A salutogenic perspective on end-of-life care among the Indigenous Sámi of Northern Fennoscandia2021In: Healthcare, E-ISSN 2227-9032, Vol. 9, no 6, article id 766Article in journal (Refereed)
    Abstract [en]

    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.

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  • 8.
    Ljungholm, Linda
    et al.
    Department of Health and Caring Sciences, Linnaeus University, Pedalstråket 13, Kalmar, Sweden.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health. The Centre for Rural Medicine, Research and Development Unit, Region Västerbotten, Storuman, Sweden.
    Ekstedt, Mirjam
    Department of Health and Caring Sciences, Linnaeus University, Pedalstråket 13, Kalmar, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Klinga, Charlotte
    Department of Health and Caring Sciences, Linnaeus University, Pedalstråket 13, Kalmar, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden; Research and Development Unit for Elderly Persons (FOU Nu) Region Stockholm, Stockholm, Sweden.
    What is needed for continuity of care and how can we achieve it?: Perceptions among multiprofessionals on the chronic care trajectory2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 686Article in journal (Refereed)
    Abstract [en]

    Background: Continuity of care (CoC) implies delivery of services in a coherent, logical and timely fashion. Continuity is conceptualized as multidimensional, encompassing three specific domains – relational, management and informational continuity – with emphasis placed on their interrelations, i.e., how they affect and are affected by each other. This study sought to investigate professionals’ perceptions of the prerequisites of CoC within and between organizations and how CoC can be realized for people with complex care needs. Methods: This study had a qualitative design using individual, paired and focus group interviews with a purposeful sample of professionals involved in the chain of care for patients with chronic conditions across healthcare and social care services from three different geographical areas in Sweden, covering both urban and rural areas. Transcripts from interviews with 34 informants were analysed using conventional content analysis. Results: CoC was found to be dependent on professional and cross-disciplinary cooperation at the micro, meso and macro system levels. Continuity is dependent on long-term and person-centred relationships (micro level), dynamic stability in organizational structures (meso level) and joint responsibility for cohesive care and enabling of uniform solutions for knowledge and information exchange (macro level). Conclusions: Achieving CoC that creates coherent and long-term person-centred care requires knowledge- and information-sharing that transcends disciplinary and organizational boundaries. Collaborative accountability is needed both horizontally and vertically across micro, meso and macro system levels, rather than a focus on personal responsibility and relationships at the micro level.

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  • 9.
    Ljungholm, Linda
    et al.
    Department of Health and Caring Sciences, Linnaeus University Kalmar, Kalmar, Sweden.
    Klinga, Charlotte
    Department of Health and Caring Sciences, Linnaeus University Kalmar, Kalmar, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    Ekstedt, Mirjam
    Department of Health and Caring Sciences, Linnaeus University Kalmar, Kalmar, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
    What matters in care continuity on the chronic care trajectory for patients and family carers?: A conceptual model2022In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 9-10, p. 1327-1338Article in journal (Refereed)
    Abstract [en]

    Aims and Objectives: To describe essential aspects of care continuity from the perspectives of persons with complex care needs and their family carers.

    Background: Continuity of care is an important aspect of quality, safety and efficiency. For people with multiple chronic diseases and complex care needs, care must be experienced as connected and coherent, and consistent with medical and individual needs. The more complex the need for care, the greater the need for continuity across different competencies, services and roles.

    Design: A constructivist grounded theory approach was applied.

    Methods: Sixteen patients with one or more chronic diseases needing both health care and social care, living in their private homes, and twelve family carers, were recruited. Semi-structured interviews were conducted and analysed with constructivist grounded theory. The COREQ checklist was followed.

    Results: A conceptual model of care continuity was constructed, consisting of five categories that were interconnected through the core category: time and space. Patients' and family carers' experiences of care continuity were closely related to timely personalised care delivery, where access to tailored information, regardless of who was performing a care task, was essential for mutual understanding. This required clarity in responsibilities and roles, interprofessional collaboration and achieving a trusting relationship between each link in the chain of care, over time and space. To achieve care continuity, all the identified categories were important, as they worked in synergy, not in isolation.

    Conclusion: Care continuity for people with complex care needs and family carers is experienced as multidimensional, with several essential aspects that work in synergy, but varies over time and depends on each person's own resources and situational and contextual circumstances.

    Relevance to clinical practice: The findings promote understanding of patients' and family carers' experiences of care continuity and may guide the delivery of care to people with complex care needs.

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  • 10.
    Näverlo, Simon
    et al.
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Strigård, Karin
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing.
    Experiences of living with a stoma in rural areas in northern SwedenManuscript (preprint) (Other academic)
  • 11.
    Näverlo, Simon
    et al.
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Strigård, Karin
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.
    Patients’ experiences of living with a stoma in rural areas in Northern Sweden2023In: International Journal of Circumpolar Health, ISSN 1239-9736, E-ISSN 2242-3982, Vol. 82, no 1, article id 2221767Article in journal (Refereed)
    Abstract [en]

    Introduction: Stoma complications are common and interfere with many aspects of everyday life. Stoma problems are usually managed by a specialised stoma nurse, a service not present in the rural areas of South Lapland in Sweden. The aim of this study was to describe how stoma patients in rural areas experience living with a stoma.

    Methods: A qualitative descriptive study with semi-structured interviews were conducted with 17 stoma patients living in rural municipalities and who received a part of their care at the local cottage hospital. Qualitative content analysis was employed.

    Results: Initially, the stoma was experienced as very depressing. Participants had difficulties in properly managing the dressing. Over time they learned how to properly care for their stoma, making their life easier. Both satisfaction and dissatisfaction with the healthcare were experienced. Those who were dissatisfied expressed a lack of competence in dealing with stoma-related problems.

    Conclusions: Living with a stoma in a rural area in northern Sweden is experienced as a learning process and acceptance of the stoma’s existence is important. This study emphasises the need for increased knowledge of stoma-related problems in rural primary healthcare in order to help patients cope with everyday life.

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  • 12.
    Renman, David
    et al.
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Strigård, Karin
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Palmqvist, Richard
    Umeå University, Faculty of Medicine, Department of Medical Biosciences, Pathology.
    Näsvall, Pia
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.
    Attitudes to and Experiences of Physical Activity After Colon Cancer Diagnosis Amongst Physically Active Individuals: A Qualitative Study2022In: Cancer Control: Journal of the Moffitt Cancer Cente, ISSN 1073-2748, E-ISSN 1526-2359, Vol. 29Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Physical activity improves survival, reduces postoperative complications, and reduces the risk of developing colon cancer. It is important to maintain physical activity after receiving a diagnosis of colon cancer to improve postoperative recovery. Individuals who are physically active and diagnosed with colon cancer presumably have different motivations to maintain physical activity compared to their sedentary counterparts.

    OBJECTIVE: Enlighten how the diagnosis of colon cancer might affect physically active individuals in their attitude and experiences towards physical activity.

    METHODS: A qualitative study using content analysis was conducted in northern Sweden based on semi-structured telephone interviews of twenty patients diagnosed with colon cancer. All participants met the recommendations for physical activity issued by the World Health Organization.

    RESULTS: Participants were between 50 and 88 years and 50% were male. Three main categories were identified: I'll fight the cancer and come out stronger; The diagnosis makes no difference; and The diagnosis is an obstacle for physical activity. These main categories represent the ways the individuals reacted to the diagnosis of colon cancer regarding their physical activity.

    CONCLUSION: Attitudes to and experience of physical activity after colon cancer diagnosis varied from a will to increase physical activity and fight the cancer, to the diagnosis putting a stop to physical activity. It is important that healthcare professionals recommend physical activity even in already physically active individuals, to encourage continued physical activity after diagnosis of colon cancer.

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  • 13.
    San Sebastian, Miguel
    et al.
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.
    Edin-Liljegren, Anette
    Umeå University, Faculty of Medicine, Department of Nursing. Centre for Rural Medicine, Region Västerbotten, Storuman, Sweden; Division of Innovative Care Research, Karolinska Institutet, Stockholm, Sweden.
    Jonsson, Frida
    Umeå University, Faculty of Medicine, Department of Epidemiology and Global Health.
    Rural-urban differences in suicide attempts and mortality among young people in northern Sweden, 1998-2017: A register-based study2020In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 48, no 8, p. 794-800Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to assess trends in suicide attempts and mortality between 1998 and 2017 by residential area and gender among northern Swedish youths.

    Methods: Events of suicide attempts and deaths for each municipality in the four counties of the northern Swedish region, stratified by gender, were retrieved for each year from 1998 to 2017. All cases identified within the registers with the diagnostic codes X60-X84 or Y10-Y34 (International Classification of Diseases, 10th revision) for individuals aged 15-24 years were included. Place of residence at municipal level was categorized into three groups: rural - municipalities with a population of <10,000 inhabitants; semi-rural - those between 10,000 and 50,000; and urban - those with >50,000 inhabitants.

    Results: The rates of attempted suicides in the northern region were higher in both men and women than in Sweden, while the rates of suicide deaths were slightly higher in young men but similar in young women compared to the national averages. Overall, the risk of suicide attempts was higher in semi-rural municipalities compared to urban ones, particularly among women. A significantly higher risk of mortality was also observed for men and women in semi-rural municipalities, but only in the period 2010-2013.

    Conclusions: The high rates of attempted and completed suicides among youth in northern Sweden and the higher risks in rural and semi-rural municipalities need close attention. The implementation of suicide prevention programs, especially in rural and semi-rural municipalities, should be intensified.

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