Patients' experiences of living with a stoma in rural areas in Northern Sweden.

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.

Patients With Cardiovascular Disease Revisiting Specialist Physicians via Remote Treatment: Interview Study of Experiences.

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.

Attitudes to and Experiences of Physical Activity After Colon Cancer Diagnosis Amongst Physically Active Individuals - A Qualitative Study.

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.

What is needed for continuity of care and how can we achieve it? - Perceptions among multiprofessionals on the chronic care trajectory.

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.

What matters in care continuity on the chronic care trajectory for patients and family carers?-A conceptual model.

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.

Values and preferences for future end-of-life care among the indigenous Sámi.

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.

A Salutogenic Perspective on End-of-Life Care among the Indigenous Sámi of Northern Fennoscandia.

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.

Rural-urban differences in suicide attempts and mortality among young people in northern Sweden, 1998-2017: A register-based study.

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.

Patient perceptions of a Virtual Health Room installation in rural Sweden.

INTRODUCTION: The Virtual Health Room (VHR) is an ehealth initiative in the village of Slussfors in northern Sweden. Construction of VHRs in other locations is taking place, and the Centre for Rural Medicine in the Västerbotten County Council primary care department has implemented a VHR evaluation framework. This research focuses on evaluation of patient perceptions of the usability of the VHR and its contribution to their health care. METHODS: Nineteen of the 25 unique users of the VHR during 2014/15 completed a survey asking about their attitudes to their own health (using the 13-question version of the Patient Activation Measure (PAM)), their demographic attributes, and their satisfaction with their visit to the VHR. RESULTS: Respondents with lower PAM scores were less satisfied with the technical performance of the VHR, but equally likely to think the VHR made a good contribution to access to health care. In contrast, older patients were less likely to value the contribution of the VHR, but no less likely to be satisfied with its technical performance. There were no relationships between level of education and distance travelled and perceptions of the VHR. CONCLUSIONS: The research clearly demonstrated the distinction between technical performance of an ehealth initiative and its overall contribution to health care and access. Evaluation frameworks need to consider both aspects of performance. Transferability of these findings to other settings may depend at least in part on the nature of the catchment area for the VHR, with the Slussfors catchment being quite small and the impact of distance on access consequently limited.

Changes in attitudes towards mental disorders and psychiatric treatment 1976-2014 in a Swedish population.

BACKGROUND: Mental illness has always been subject to stigma and discrimination. There are a number of studies on public attitudes towards people with mental illness. Long-term studies, however, examining changes over time are scarce. AIMS: The aim of this study was to examine potential changes concerning attitudes between 1976 and 2014 in Vilhelmina, a community in northern Sweden. METHODS: A postal questionnaire was sent out to a random sample of 500 adults aged 18-70 years. The same questionnaire has previously been used in 1976 and 2003. RESULTS: The attitudes towards people with mental illness have not generally become more positive over the years. In 2014 almost a quarter of the population still think that "people with mental illness commit violentX acts more than others". Even more people in 2014 than in 1976 agree to the statement that "mental illness harms the reputation more than a physical disease" (77.2% versus 52.8%). People with low educational level have more negative views than people with higher education. Younger respondents, < 20 years, had a more positive view than the older age groups. Almost 70% of the respondents would advise someone with psychological problems to seek a psychiatrist but only 23% of the respondents would follow their own advice. Psychotherapy has been and is still highly appreciated. As regards medication the perception is more critical, but there has been a significant change, however, to a more positive attitude towards medication since 1976. CONCLUSION: Attitudes towards mental illness and mentally ill people have not changed substantially over time.

The confidence in health care and social services in northern Sweden--a comparison between reindeer-herding Sami and the non-Sami majority population.

AIMS: To investigate the confidence in primary health care, psychiatry and social services among the reindeer-herding Sami and the non-Sami population of northern Sweden. METHODS: A semi-randomized, cross-sectional study design comprising 325 reindeer-herding Sami (171 men, 154 women) and a control population of 1,437 non-Sami (684 men, 753 women). A questionnaire on the confidence in primary health care, psychiatry, social services, and work colleagues was distributed to members of reindeer-herding families through the Sami communities and to the control population through the post. The relative risk for poor confidence was analyzed by calculating odds ratios with 95% confidence intervals adjusted for age and level of education. RESULTS: The confidence in primary health care and psychiatry was significantly lower among the reindeer-herding Sami compared with the control group. No differences were found between men and women in the reindeer-herding Sami population. In both the reindeer-herding Sami and the control population, younger people (≤ 48 years) reported significantly lower confidence in primary health care than older individuals (>48 years). CONCLUSIONS: A conceivable reason for the poor confidence in health care organizations reported by the reindeer-herding Sami is that they experience health care staff as poorly informed about reindeer husbandry and Sami culture, resulting in unsuitable or unrealistic treatment suggestions. The findings suggest that the poor confidence constitutes a significant obstacle of the reindeer-herding Sami to fully benefit from public health care services.

Adherence to a traditional lifestyle affects food and nutrient intake among modern Swedish Sami.

OBJECTIVES: To compare the nutrient and food intake of Sami still engaged in reindeer herding (traditional lifestyle or reindeer-herding Sami [RS]) and Sami not involved in reindeer herding (industrialized lifestyle or non-reindeer-herding Sami [NRS]) with other northern Swedish populations. STUDY DESIGN: Cross-sectional analysis of data from a prospective cardiovascular intervention program in northern Sweden. METHODS: Data were used from a prospective cardiovascular intervention program in northern Sweden. Sami recruited into this study were divided according to whether they were involved in reindeer herding (traditional lifestyle, RS) (66 females, 79 males) or not (NRS) (255 females, 195 males), and compared to non-Sami from the same area taking part in the same study (controls) (499 females, 501 males). Subjects completed a Food Frequency Questionnaire (FFQ) and clinical parameters were analysed. RESULTS: RS had a higher overall intake of energy for both females (P<0.01) and males (P<0.05), but not total food intake compared to controls and NRS. The overall Sami diet was characterized by a higher proportion of energy from protein and fat. RS had a lower energy adjusted intake of vitamins A and E, and fibre, and higher intake of sodium. RS and NRS both had a lower intake of vegetables and a higher intake of meat, and for RS, fish. Nutrient and food-intake patterns were similar for males and females. CONCLUSIONS: Classification of Sami into RS and NRS indicates that a traditional lifestyles defined by occupation is reflected in differences in food and nutrient intake.

Quality of life in relation to physical, psychosocial and socioeconomic conditions among reindeer-herding Sami.

OBJECTIVES: To analyse different aspects of health-related quality of life factors among members of reindeer-herding families. STUDY DESIGN: Cross-sectional study based on data from a comprehensive survey. METHODS: The health-related quality of life (SF-36) factors were analysed on 99 (56 men, 43 women) adult members of reindeer-herding families. Comparisons were made between the reindeer-herding family members and a Swedish reference population. Associations between mental and physical component summary measures and a number of sociodemographic, biomedical, physical, psychosocial and socio-economic variables were analysed with multivariate regression statistics. RESULTS: Men scored higher than women on physical and social function and vitality. The average scores on the subscales for the reindeer-herding family members were similar to those of the Swedish reference population, except for reindeer-herding men who scored higher on physical function and lower on bodily pain. For women, the quality of life was related to age, sense of coherence, lifestyle and behavioural variables, as well as to issues such as diseases among close relatives, social networks and the economy of their business. For men, it was mainly related to musculoskeletal pain conditions, age, sense of coherence and physical and psychosocial working conditions. CONCLUSIONS: Men and women of the reindeer-herding families need partly different conditions to enjoy a high quality of life. From the results, it might be predicted that poor somatic and psychosocial health, increased intrusion from exploiters on the grazing land and declining profit in reindeer husbandry constitute important threats to a good quality of life among members of reindeer-herding families.

Linkage disequilibrium between microsatellite markers in the Swedish Sami relative to a worldwide selection of populations.

The pattern of linkage disequilibrium (LD) is affected by a number of factors, including population demography. High LD is seen in populations with a relatively limited and constant size, presumably because of genetic drift. We have examined the extent of LD among over 300 genome-wide pattern microsatellite loci in 29 populations from around the world. The pattern of LD varied between populations, with a larger extent of LD in populations with limited size relative to larger populations. In addition, the LD between 88 less well-spaced microsatellite markers from 10 different genomic regions was examined in the Sami compared with the general Swedish population. For these markers, increased LD extending up to 5 Mb was detected in the Sami. The amount of LD also differed between the chromosomal regions. The amount of LD in the Sami makes this population suitable for the mapping of complex genetic traits.

Work-related musculoskeletal pain among reindeer herding Sami in Sweden--a pilot study on causes and prevention.

OBJECTIVE: To investigate the prevalence and to identify causes of musculoskeletal pain (MSP) among reindeer herding Sami, and to evaluate the impact on the MSP symptoms elicited by an intervention-prevention programme (IP programme). STUDY DESIGN: A prospective cohort study in which alterations in MSP symptoms were documented over a two-year period. METHODS: Data were collected from 51 reindeer herders (26 men, 25 women) before and after a two-year IP programme. Information on MSP characteristics (affected body regions, pain duration and pain intensity) and exposure to a number of physical and psychosocial risk factors were collected as part of comprehensive health examinations. Clinical examinations and interviews complemented self-reported data collected through questionnaires. RESULTS: MSP symptoms were prevalent, both among women and men. High exposure to physical risk factors, to a large extent related to extensive use of snowmobiles and motorcycles, was the main cause of MSP among men, while psychosocial risk factors were suggested to be more important among women. About one-third of the reindeer herders reported fewer MSP symptoms as a result of the IP programme. CONCLUSIONS: This pilot study suggests that it is possible to reduce the number and the severity of the MSP symptoms among reindeer herders by implementing suitably tailored intervention-prevention measures.