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1.	Pauli Bock, Emelie, et al. (author) Literature Review : Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities. 2021 In: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 61, s. e42-e50 Journal article (peer-reviewed)abstract PROBLEM: The current knowledge of evidence-based design for adults is not always implemented when hospital buildings are designed. Scientific data are sparse on the effects of hospital design in pediatric settings on health outcomes in children, parents, and staff. The objective of this review is to determine the evidence-based impact of the built environment in pediatric hospital facilities on health outcomes in children, parents, and staff.ELIGIBILITY CRITERIA: A systematic literature review was carried out on the electronic databases Cochrane Library, Embase, Medline and CINAHL from the period of 2008 to 2019. The review considered studies using either quantitative, qualitative, or mixed methodologies.SAMPLE: Out of 1414 reviewed articles the result is based on eight included articles.RESULTS: Two of these eight articles included health outcomes. The other six articles presented results on measures of perceptions and/or satisfaction for children, parents or staff with the built environment when transitioning to a new or renovated facility. These were generally higher for the new compared to the old facility.CONCLUSIONS: Given the small number of studies addressing the question posed in this review, no firm conclusions can be drawn.IMPLICATIONS: The review illustrates the need for more research in the pediatric setting assessing the evidence-based health outcomes of aspects of physical environmental design in pediatric hospitals or units in children, parents and staff.
2.	Girma Kebede, Betlehem, et al. (author) Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia 2020 In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3 Journal article (peer-reviewed)abstract Background: Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. Results Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. Conclusions This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients’ dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient’s continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.
3.	Falk Erhag, Hanna, et al. (author) A Multidisciplinary Approach to Capability in Age and Ageing 2022 Book (other academic/artistic)abstract This open access book provides insight on how to interpret capability in ageing – one’s individual ability to perform actions in order to reach goals one has reason to value – from a multidisciplinary approach. With for the first time in history there being more people in the world aged 60 years and over than there are children below the age of 5, the book describes this demographic trends as well as the large global challenges and important societal implications this will have such as a worldwide increase in the number of persons affected with dementia, and in the ratio of retired persons to those still in the labor market. Through contributions from many different research areas, it discussed how capability depends on interactions between the individual (e.g. health, genetics, personality, intellectual capacity), environment (e.g. family, friends, home, work place), and society (e.g. political decisions, ageism, historical period). The final chapter by the editors summarizes the differences and similarities in these contributions. As such this book provides an interesting read for students, teachers and researchers at different levels and from different fields interested in capability and multidisciplinary research.
4.	Eerola, Paula, et al. (author) Accelerator-based infrastructures in the fields of particle and nuclear physics 2020 Reports (other academic/artistic)abstract The Council for Research Infrastructures (RFI) within the Swedish Research Council (Vetenskapsrådet) commits a significant part of its annual budget to accelerator-based infrastructures in particle and nuclear physics. The funding covers membership fees, running costs and investments. The Swedish activities in these fields are mainly focused on CERN (Geneva, Switzerland) and FAIR (Darmstadt, Germany). In 2019, RFI decided to commission an investigation and landscape analysis of the research infrastructures they fund in these fields. The report is meant to support the Council’s work in ensuring that these funds are strategically well-spent and of maximum benefit to the research community. A panel of seven experts from the Nordic countries have worked on the task with the aid of data from relevant documentation, hearings, interviews and questionnaires. The report contains several concrete recommendations given from the authors to RFI.
5.	Hovlin, Lina, et al. (author) Mutual trust is a prerequisite for nurses’ sense of safety and work satisfaction – Mobile Integrated Care Model : A qualitative interview study 2023 In: Nordic journal of nursing research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 43:1, s. 1-8 Journal article (peer-reviewed)abstract An increasing number of older persons have complex health care needs. This, along with the organizational principle of remaining at home, emphasizes the need to develop collaborations among organizations caring for older persons. A health care model developed in Sweden, the Mobile Integrated Care Model aims to promote work in teams across organizations. The aim of the study was to describe nurses’ experiences in working and providing health care in the Mobile Integrated Care Model in the home with home health care physicians. Semi-structured interviews were conducted with 18 nurses and analyzed through qualitative content analysis. The method was compliant with the COREQ checklist. A mutually trusting collaboration with physicians, which formed person-centered care, created work satisfaction for the nurses. Working within the Mobile Integrated Care Model was negatively impacted by being employed by different organizations, lack of time to provide health care, and physicians’ person-centered work abilities.
6.	Hovlin, Lina, et al. (author) The role of the home health care physician in mobile integrated care : a qualitative phenomenograpic study 2022 In: BMC Geriatrics. - : BioMed Central (BMC). - 1471-2318. ; 22:1 Journal article (peer-reviewed)abstract Background: An increasing older population, along with the organizational principle of remaining at home, has moved health care from institutions into the older person’s home, where several health care providers facilitate care. The Mobile Integrated Care Model strives to provide cost-efficient, coherent, person-centered health care in the home. In the integrated care team, where the home health care physician is the medical authority, several health care professions work across organizational borders. Therefore, the aim of this study was to describe Home Health Care Physicians perceptions of working and providing health care in the Mobile Integrated Care Model, as well as perceptions of participating in and forming health care.Methods: A phenomenographic qualitative study design, with semi-structured interviews using an interview guide.Results: Working within Mobile Integrated Care Model was a different way of working as a physician. The physicians’ role was to support the patient by making safe medical decisions. Physicians described themselves as a piece in the team puzzle, where the professional knowledge of others was crucial to give quality health care. Being in the patients’ homes was expressed as adding a unique dimension in the provision of health care, and the physicians learned more about the patients by meeting them in their homes than at an institution. This aided the physicians in respecting patient autonomy in medical decision making, even though the physicians sometimes disregarded patient autonomy in favor of their own medical experience. There was a divided view on next of kin participation among the home health care physicians, ranging from always including to total absence of involving next of kin in decision making.Conclusions: The home health care physicians described the Mobile Integrated Care Model as the best way to work, but there was still a need for additional resources and structure when working in different organizations. The need for full-time employment, additional time or hours, more equipment, access to each other’s medical records, and additional collaboration with other health care providers were expressed, which could contribute to increased work satisfaction and facilitate further development of person-centered care in the Mobile Integrated Care Model.
7.	Elf, Marie, 1962-, et al. (author) The home as a place for rehabilitation-What is needed? 2020 In: Architecture for Residential Care and Ageing Communities: Spaces for Dwelling and Healthcare. - New York, NY : Routledge, 2021. : Routledge. - 9780367358730 ; , s. 252-266, s. 252-266 Book chapter (other academic/artistic)abstract This chapter aims to contribute to an understanding of the physical environment as an important part of the rehabilitation process for patients recovering from a stroke who rehabilitate at home. To further develop evidence-based care models for rehabilitation at home and incorporate person-environment dynamics, an understanding of how environmental factors relate to everyday life and recovering at home is crucial, especially for persons with long-term conditions, such as stroke survivors. Along with highlighting the challenges for the stroke survivors when rehabilitated at home, we discuss initiatives and intervention needed. We also present important theories that can be used in research in order to increase the knowledge of the person-environment interaction from a societal perspective vital to increase our knowledge of home and health dynamics in this context.
8.	Maneschiöld, Per-Ola, et al. (author) Nursing assistant's perceptions of the good work environment in municipal elderly care in Sweden –a focus group study 2021 In: Journal of health organization and management. - : Emerald Group Publishing Limited. - 1477-7266 .- 1758-7247. ; 35:9, s. 163-177 Journal article (peer-reviewed)abstract Purpose: The purpose of this paper is to investigate aspects related to difficulty to retain nursing assistants at nursing homes in Sweden related to perceived work environment characteristics. Design/methodology/approach: To reveal aspects related to difficulty to retain nursing assistants, the paper uses the BIKVA model, sense of coherence and New Public Management (NPM). In total, three focus groups with nursing assistants at three nursing homes are interviewed with corresponding individual interviews with their senior managers and users. The purpose is to analyze the situation from the affected group of nursing assistants. The focus of this study is how nursing assistants discuss related to recruit and retain nursing assistants at nursing homes and elderly care and the response from senior management related to those aspects. Findings: The main conclusions are that nursing assistants consider their job as meaningful, but limited latitude and direct involvement in managing their daily tasks in a continuous communication with management affect negatively. Furthermore and combined with wage levels, aspects related to scheduling, working hours, shift work, split shifts and understaffing generate a burdensome and stressful environment affecting the possibility to retain staff in a negative direction. Originality/value: The research uses a new approach utilizing the BIKVA model, sense of coherence and NPM. The study shows that central in retaining nursing assistants at nursing homes relates to aspects such as wages, staffing, shift work and split shifts and continuous communication between nursing assistants and management. © 2021, Per-Ola Maneschiöld and Diana Lucaci-Maneschiöld.
9.	Persson, Klara Josefina, et al. (author) Do best practice recommendations align with current aphasia practices in the Swedish care context : a national survey 2022 In: Aphasiology. - : Routledge. - 0268-7038 .- 1464-5041. ; 36:8, s. 903-920 Journal article (peer-reviewed)abstract Background: For healthcare professionals, decision-makers and taxpayers, clinical guidelines and recommendations are tools for implementing interventions supported by research evidence. To ensure efficient, safe, and equal care for people with aphasia (PWA) in Sweden, it is vital that speech and language pathologists (SLPs) can work in accordance with evidence-based practice.Aim: To investigate to which degree the Best practice recommendations for aphasia (BPRA) are already well aligned with current practice in the management of aphasia and to what extent they would require adjustment to fit the Swedish care contexts.Methods and procedures: The BPRA were translated from English to Swedish according to steps 1 and 2 in the translation method recommended by the World Health Organization (WHO). A web-based questionnaire was used for data collection. All healthcare regions in Sweden were represented, and the study included a total of 109 SLPs. The participants' perceived knowledge and application of the recommendations and whether the recommendations can serve as a basis for national clinical guidelines were summarized quantitatively. The participants' comments on the applicability of the BPRA were analyzed with qualitative content analysis according to an established model.Outcomes and results: Only a few participants indicated they had good knowledge of the BPRA. The responses additionally showed that the application of the BPRA varied between the participants and across clinical settings. Lacking SLP resources was stated to be the main perceived barrier for complying with the recommendations. The participants also stated that the BPRA requires adjustment to provide a partial basis for national clinical guidelines for aphasia and the need for national clinical guidelines to be adjusted to prevalent SLP resources.Conclusions: There are challenges in following up on some of the interventions that, according to both multinational recommendations and Swedish guidelines, should be given priority in the care of PWA. The barriers that are stated to complicate Swedish SLPs' compliance with some of the multinational recommendations are similar to the barriers posed by SLPs in other national studies on the uptake of aphasia rehabilitation recommendations. In Sweden, SLPs experience a lack of resources of various kinds to be able to fully comply with the BPRA.
10.	Rexhepi, Hanife, 1984-, et al. (author) Online electronic healthcare records : Comparing the views of cancer patients and others 2020 In: Health Informatics Journal. - : Sage Publications. - 1460-4582 .- 1741-2811. ; 26:4, s. 2915-2929 Journal article (peer-reviewed)abstract This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.
11.	Wennman, Ingela, et al. (author) "We Are Here for You All the Way"-Patients' and Relatives' Experiences of Receiving Advanced Home Care 2020 In: American Journal of Hospice & Palliative Medicine. - : SAGE Publications. - 1049-9091 .- 1938-2715. ; 37:9, s. 669-74 Journal article (peer-reviewed)abstract Background: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care. Objective: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives. Design: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating. Setting/Participants: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group's Performance Status, older than 18 years, able to orient to time and place, and not newly registered. Analysis: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis. Results: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home. Conclusion: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.
12.	Mohammad, Salahuddin, et al. (author) Job satisfaction and job tenure of people with mental health disorders : a UK Biobank cohort study 2023 In: Scandinavian Journal of Public Health. - : Sage Publications. - 1403-4948 .- 1651-1905. ; 51:8, s. 1248-1257 Journal article (peer-reviewed)abstract Aims:Job satisfaction plays an important role for the life quality and health of working individuals. While studies have shown that self-reported mental health conditions such as stress, anxiety and depression are associated with job satisfaction, a large population-based study exploring and comparing self-reported physician posed diagnosed conditions and their association with job satisfaction and job tenure is missing. This study addresses the gap along with exploring the impact of the neurotic personality trait and other possible contributing factors.Methods:Sixteen mental health disorders diagnosed by physicians, categorised into four major groups were investigated in relation to employment status (108,711 participants) and in relation to job satisfaction and job tenure (34,808 participants). Analyses were performed using linear regression adjusted for age, sex, townsend deprivation index, body mass index, education, physical activity, work hours and neuroticism.Results:Neurotic and stress disorders, eating disorders and other mental health disorders were strongly associated with lower job satisfaction and shorter job tenure in both unadjusted and adjusted analyses. Neuroticism was strongly linked to job satisfaction but was not associated with job tenure.Conclusions:Study findings clarify the complex relationship of mental health with job satisfaction and job tenure, which is very important to understand in designing measures to improve working life participation of individuals with mental health issues.
13.	Bångsbo, Angela, PhD, 1968-, et al. (author) Preconditions to implementation of an integrated care process programme 2021 In: Journal of Integrated Care. - : Emerald Group Publishing Limited. - 1476-9018. Journal article (peer-reviewed)abstract PurposeThe purpose of this study was to investigate the preconditions of a full-scale implementation of an integrated care process programme for frail older people from the staff's understanding, commitment and ability to change their work procedures with comparisons over time and between organisations.Design/methodology/approachA repeated cross-sectional study was conducted in a hospital, municipal health and social care setting.FindingsStaff commitment decreased to the importance of a permanent municipal contact from baseline compared to the 12-months follow-up (p = 0.02) and the six- and 12-months follow-up (p = 0.05), to the information transfer from emergency department from the six- to the 12-months follow-up (p = 0.04), to discharge planning at the hospital at six- and 12-months follow-up (p = 0.04) and towards discharge planning at home from baseline to the six-month follow-up (p = 0.04). Significant differences occurred between the organisations about information transfer from the emergency department (p = 0.01) and discharge planning at home (p = 0.03). The hospital staff were the most committed.Practical implicationsThe results can guide the implementation of complex interventions in organisations with high-employee turnover and heavy workload.Originality/valueThe study design, allowing the comparison of implementation results over time and between organisations in a later phase, gives this study a unique perspective.
14.	Rasmussen, Bodil, et al. (author) We're on mute! Exclusion of nurses' voices in national decisions and responses to COVID-19: An international perspective 2022 In: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 78 Journal article (peer-reviewed)
15.	Widberg, Cecilia, et al. (author) Patients’ experiences of eHealth in palliative care : an integrative review 2020 In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1, s. 1-14 Research review (peer-reviewed)abstract Background: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care.Methods: The aim of this study was to describe patients’ experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014–2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies.Results: The findings are synthesized in the main theme: E-health applications – promoting communication on patients’ and families’ terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients’ experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology.Conclusions: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.
16.	Josephsson, Staffan, et al. (author) Using Ricoeur's notions on narrative interpretation as a resource in supporting person-centredness in health and social care. 2022 In: Nursing Philosophy. - : Wiley. - 1466-769X .- 1466-7681. ; 23:3 Journal article (peer-reviewed)abstract This article suggests a shift in focus from stories as verbal accounts to narrative interpretation of the every day as a resource for achieving person-centred health and social care. The aim is to explore Ricoeur's notion of narrative and action, as expressed in his arguments on a threefold mimesis process, using this as a grounding for the use of narration to achieve person-centredness in health and social care practice. This focus emerged from discussions on this matter at the IPONS conference in Gothenburg, 2021. Based on philosophical resources from Ricoeur's notions of narrative and action developed in his arguments on a threefold mimesis process, we propose a wider use of stories in health and social care practices. We suggest expanding from only focusing on verbal accounts to focusing on narrative as a human way to interpret and make sense of everyday life and circumstances and to communicate possible meanings. We discuss how such complementary focus can be a resource in getting patients involved and collaborating in their health and social care and thereby help develop person-centred practices.
17.	Pasquini, Mirko, 1991 (author) Like ticking time bombs. Improvising structural competency to ‘Defuse’ the exploding of violence against emergency care workers in Italy 2023 In: Global Public Health. - : Informa UK Limited. - 1744-1692 .- 1744-1706. ; 18:1 Journal article (peer-reviewed)abstract While violence against health care workers is being progressively recognised as a serious problem in the healthcare industry, it remains an under-studied area of enquiry in global public health. Anthropologists have long observed that violence toward patients is tied to institutional care practises in multiple ways, including repression, misrecognition and silencing. But research on health care staff’s experience of violence is still lacking. This article aims to address this literature gap by providing research on the daily experience of vulnerability to violence that health care providers face during their work. To do so, the paper ethnographically explores the effects and perception of violence against health care workers in an emergency department (ED) in northern Italy, a place with a dramatic escalation of violent incidents. The article illustrates how the ED staff attended to the experience of suffering of potentially violent patients. In so doing, ED professionals shifted the responsibility of violence against them from violent individuals to violent structures shaping health inequities. The paper thus argues that ED professionals display a structural competence perspective when dealing with violence.
18.	Berbyuk Lindström, Nataliya, 1978, et al. (author) Person- and Family-Centeredness in Ethiopian Cancer Care: Improving Communication, Ethics, Decision Making and Health 2020 In: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:5 Journal article (peer-reviewed)abstract BACKGROUND: Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital (TASH) in Addis Ababa is the country's sole specialist unit for cancer care. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential in order to help patients as much as possible within such limitations. OBJECTIVE: The project addresses three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice, and (3) to plan and evaluate interventions in this area. METHODS: This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making, and ethical tensions between patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semi-structured interviews with the Ethiopian staff, patients, and family caregivers (91), survey data on cancer awareness (150) and attitudes to breaking bad news (450), and video-recordings of medical consultations (45). In addition, we will also develop clinical and methodological solutions to formulate educational interventions. RESULTS: The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018-2021. The research ethics board in Sweden and in Ethiopia approved the conduct of the project in May 2018. The results from the studies will be published in 2020 and 2021. CONCLUSIONS: The project is a first step towards producing unique and seminal knowledge for the specific context of Ethiopia in the area of physician-patient communication research and ethics. It contributes to an understanding of the complexity around the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low resource settings in Africa and the Middle East, which share central cultural prerequisites (such as a strong patriarchal family structure, combined with strong and devout religiosity). The project will also serve to develop greater understanding about current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will also contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication.
19.	Hagström, Josefin, et al. (author) Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online 2024 In: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1422-1423 Journal article (peer-reviewed)abstract Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.
20.	Ahmadi, Zainab, et al. (author) Smoking and home oxygen therapy : a review and consensus statement from a multidisciplinary Swedish taskforce 2024 In: European Respiratory Review. - : European Respiratory Society. - 0905-9180 .- 1600-0617. ; 33:171 Research review (peer-reviewed)abstract Background: Home oxygen therapy (HOT) improves survival in patients with hypoxaemic chronic respiratory disease. Most patients evaluated for HOT are former or active smokers. Oxygen accelerates combustion and smoking may increase the risk of burn injuries and fire hazards; therefore, it is considered a contraindication for HOT in many countries. However, there is variability in the practices and policies regarding this matter. This multidisciplinary Swedish taskforce aimed to review the potential benefits and risks of smoking in relation to HOT, including medical, practical, legal and ethical considerations.Methods: The taskforce of the Swedish Respiratory Society comprises 15 members across respiratory medicine, nursing, medical law and ethics. HOT effectiveness and adverse risks related to smoking, as well as practical, legal and ethical considerations, were reviewed, resulting in five general questions and four PICO (population–intervention–comparator–outcome) questions. The strength of each recommendation was rated according to the GRADE (grading of recommendation assessment, development and evaluation) methodology.Results: General questions about the practical, legal and ethical aspects of HOT were discussed and summarised in the document. The PICO questions resulted in recommendations about assessment, management and follow-up of smoking when considering HOT, if HOT should be offered to people that meet the eligibility criteria but who continue to smoke, if a specific length of time of smoking cessation should be considered before assessing eligibility for HOT, and identification of areas for further research.Conclusions: Multiple factors need to be considered in the benefit/risk evaluation of HOT in active smokers. A systematic approach is suggested to guide healthcare professionals in evaluating HOT in relation to smoking.
21.	Jäderlund Hagstedt, Lovisa, et al. (author) Impact of the Covid-19 pandemic on use of Video consultations in a Swedish Primary care setting 2022 In: Proceedings of the 18th Scandinavian Conference on Health Informatics. - : Linköping University Electronic Press. - 9789179293444 ; , s. 212-213 Conference paper (peer-reviewed)abstract The objective is to describe how the uptake of online video consultations was affected by the Covid-19 pandemic, using data from a Swedish primary care setting. There seem to be a relationship between the use of video consultations and spread of Covid-19, especially in 2020 when the use varied more with the contagion waves. In 2021 the use was more consistent over time. In summary, the Covid-19 pandemic had a direct impact on the adoption of video consultations in our primary care setting, yet after the initial high use, it appears to have stabilized on a lower level.
22.	Øvretveit, J (author) Implementation researchers can improve the responses of services to the COVID-19 pandemic 2020 In: Implementation research and practice. - : SAGE Publications. - 2633-4895. ; 1, s. 2633489520949151- Journal article (peer-reviewed)abstract This article describes a rapid implementation research project with the Stockholm health care system to assist the system to respond to the COVID-19 pandemic. It uses this example to illustrate some ways in which implementation research and knowledge can contribute to improving service responses to the pandemic and its consequences as these evolve over the coming months. A sub-specialty of rapid implementation science is proposed to provide practical assistance and as one way to develop implementation research. This article describes a rapid implementation research project with the Stockholm health care system to assist the system to respond to the COVID-19 pandemic. It uses this example to illustrate some ways in which implementation research and knowledge can contribute to improving service responses to the pandemic and its consequences as these evolve over the coming months. A sub-specialty of rapid implementation science is proposed to provide practical assistance and as one way to develop implementation research.
23.	Sandheimer, Christine, et al. (author) Implementation of a care manager organisation and its association with antidepressant medication patterns: a register-based study of primary care centres in Sweden. 2021 In: BMJ Open. - : BMJ. - 2044-6055. ; 11:3 Journal article (peer-reviewed)abstract To evaluate the implementation of a care manager organisation for common mental disorders and its association with antidepressant medication patterns on primary care centre (PCC) level, compared with PCCs without this organisation. Moreover, to determine whether a care manager organisation is associated with antidepressant medication patterns that is more in accordance with treatment guidelines.Register-based study on PCC level.Primary care in Region Västra Götaland, Sweden.All PCCs in the region. PCCs were analysed in three subgroups: PCCs with a care manager organisation during 2015 and 2016 (n=68), PCCs without the organisation (n=92) and PCCs that shifted to a care manager organisation during 2016 (n=42).Proportion of inadequate medication users, defined as number of patients >18 years with a common mental disorder diagnosis receiving care at a PCC in the region during the study period and dispensed 1-179 defined daily doses (DDD) of antidepressants of total patients with at least 1 DDD. The outcome was analysed through generalised linear regression and a linear mixed-effects model.Overall, all PCCs had about 30%-34% of inadequate medication users. PCCs with a care manager organisation had significantly lower proportion of inadequate medication users in 2016 compared with PCCs without (-6.4%, p=0.02). These differences were explained by higher proportions in privately run PCCs. PCCs that shifted to a care manager organisation had a significant decrease in inadequate medication users over time (p=0.01).Public PCCs had a more consistent antidepressant medication pattern compared with private PCCs that gained more by introducing a care manager organisation. It was possible to document a significant decrease in inadequate medication users, notwithstanding that PCCs in the region followed the guidelines to a comparatively high extent regardless of present care manager organisation.
24.	Sandheimer, Christine, et al. (author) Implementation of a Care Manager Organization and Its Association with Health Care Contacts and Psychotherapy: A Register-Based Study of Real-Life Outcomes at Primary Health Care Centers in Sweden. 2021 In: International Journal of General Medicine. - 1178-7074. ; 14, s. 5621-5630 Journal article (peer-reviewed)abstract A care manager organization, based on a collaborative care model, was implemented in the primary health care service in Region Västra Götaland, Sweden, to improve the care of persons with common mental disorders (CMDs). We aimed to investigate the association between the care manager organization and number of health care contacts, and the extent of psychotherapy among female and male patients with CMD compared to primary health care centers (PHCCs) offering usual care, in the introductory year of implementation with one year follow-up.This register-based study included all PHCCs in the region, which were analyzed in two groups depending on their care manager status. The study periods were 2015.09.01-2016.08.31 (first year) and 2016.09.01-2017.08.31 (second year). Data on health care contacts and psychotherapy per PHCC were obtained from a health care register. The mean number and proportion of visits to different health care professionals, and the proportion of patients with short-term versus long-term psychotherapy were measured. A linear mixed-effects model for cross-sectional and longitudinal analysis was implemented as well as a generalized linear regression model for possible interaction effects of PHCC characteristic on care manager status and outcomes.PHCCs with a care manager organization had more nurse contacts (p = 0.001 for both year 1 and year 2) compared to PHCCs with usual care. PHCCs with usual care had a significantly lower proportion of visits to psychotherapists and a higher proportion of both female and male patients receiving short-term psychotherapy (1-5 sessions vs ≥6) over time and compared to PHCCs with a care manager organization.With a care manager organization, nurse contacts increased at the PHCCs. However, this did not negatively influence the visits to a general practitioner and to psychotherapists. This evaluation showed that the care manager organization at PHCC level implies higher accessibility and sustainability of care for up to two years after implementation.
25.	Johansson, Linda, 1978-, et al. (author) Using aggregated data from Swedish national quality registries as tools to describe health conditions of older adults with complex needs 2021 In: Aging Clinical and Experimental Research. - : Springer. - 1594-0667 .- 1720-8319. ; 33:5, s. 1297-1306 Journal article (peer-reviewed)abstract Background: Combining National Quality Registries (NQRs) with existing National Health Registries (NHRs) might make it possible to get a wider picture of older adults health situation. The aim was to examine the feasibility of aggregating data across different NQRs and existing NHRs to explore the possibility to investigate trajectories and patterns of disease and care, specifically for the most ill older adults. Method: A Swedish twin population (N = 44,816) was linked to nine NQRs and four NHRs. A descriptive mixed-method study was performed. A manifest content analysis identified which health parameters were collected from each NQR. Factor analysis identified patterns in representation across NQRs. Two case studies illustrated individual trajectories of care by using NQRs and NHRs. Results: About 36% of the population was registered in one or more NQRs. NQRs included 1849 variables that were sorted into 13 categories with extensive overlap across the NQRs. Health and function variables were identified, but few social or cognitive variables. Even though most individuals demonstrated unique patterns of multi-morbidities, factor analysis identified three clusters of representation in the NQRs with sufficient sample sizes for future investigations. The two cases illustrated the possibility of following patterns of disease and trajectories of care. Conclusions: NQRs seem to be a significant source for collecting data about a population that may be underrepresented in most research on aging because of their age and poor health. However, NQRs are primarily disease related, and further development of the registries to maximize coverage and utility is needed.
26.	Marmstål Hammar, Lena, 1979-, et al. (author) Being Treated With Respect and Dignity? : Perceptions of Home Care Service Among Persons With Dementia 2021 In: Journal of the American Medical Directors Association. - New York : Elsevier. - 1525-8610 .- 1538-9375. ; 22:3, s. 656-662 Journal article (peer-reviewed)abstract Objective: Studies on the quality of home care services (HCS) offered to persons with dementia (PwDs) reveal the prevalence of unmet needs and dissatisfaction related to encounters and a lack of relationships with staff. The objective of this study was to enhance knowledge of the perceptions of PwDs regarding their treatment with dignity and respect in HCS over time.Design: A mixed longitudinal cohort study was designed to study trends in the period between 2016 and 2018 and compare the results between PwDs (cases) and persons without dementia (controls) living at home with HCS.Setting and Participants: Persons aged 65 years and older with HCS in Sweden.Methods: Data from an existing yearly HCS survey by the Swedish National Board of Health and Welfare (NBHW) was used. The focus was on questions concerning dignity and respect. NBHW data sets on diagnoses, medications, HCS hours, and demographic information were also used. We applied GEE logistic and cumulative logit regression models to estimate effects and trends of interest after controlling for the effects of age, gender, self-rated health, and number of HCS hours.Results: Over the study period, 271,915 (PwDs¼8.1%) respondents completed the survey. The results showed that PwDs were significantly less likely (3%-10% lower odds and cumulative odds) than controls to indicate that they were satisfied in response to questions related to dignity and respect. Both groups experienced a decrease in satisfaction from 2016 to 2018. Females, individuals with poor self-rated health, and individuals granted more HCS hours were found to be more dissatisfied.Conclusions and Implications: The HCS organization needs to shift from a task-oriented system to a person-centered approach, where dignity and respect are of the utmost importance. The HCS organizations need to be developed to focus on competence in person-centered care, and leadership to support staff.
27.	Snögren, Maria, et al. (author) Older adults’ perceptions of oral health and its influence on general health : A deductive direct content analysis 2023 In: Nordic journal of nursing research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 43:1, s. 1-8 Journal article (peer-reviewed)abstract Oral health is a complex issue associated with social and behavioral factors and general health. Therefore, this study aims to explore Swedish older adults’ perceptions of oral health and its influence on general health, based on the World Dental Federation's (FDI) definition and framework of oral health. The study adopted a descriptive qualitative design. Data were collected from semi-structured individual and focus group interviews with older adults (n = 23) and were analyzed with deductive direct content analysis. The study was evaluated using the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. The older adults described the importance of good oral health in the physical, social, emotional, and mental aspects of their daily lives. The findings also indicate that older adults described oral health as multifaceted and agreed with the FDI's definition and framework of oral health. Therefore, the study findings might provide healthcare professionals with new knowledge and further insight into older adults’ perceptions of oral health and its influence on their well-being and general health.
28.	Tarvis, Maria, 1963-, et al. (author) From chaos to a new normal—the COVID-19 pandemic as experienced by municipal health and social care providers in Sweden : A qualitative study 2023 In: Nordic journal of nursing research. - London : Sage Publications. - 2057-1585 .- 2057-1593. ; 43:1, s. 1-9 Journal article (peer-reviewed)abstract When the COVID-19 pandemic began to spread around the world, Swedish municipalities were unprepared. Different guidelines on how to act in relation to the disease varied and protective equipment was lacking. This study aims to describe the experiences of health and social care providers of working at municipality level during the COVID-19 pandemic. A total of 12 assistant nurses, 13 registered nurses, and three physicians were interviewed, individually or in groups, between fall 2020 and spring 2021. The interviews were semi-structured and were analyzed using thematic analysis, utilizing a design following the COREQ-checklist. Three main themes were identified as follows: ‘Initial chaotic situation and uncertainty regarding how to deal with the pandemic’; ‘Continuous changes in organization and work routines’, and ‘Management of the pandemic has become the new normal’. Though health and social care workers eventually managed to embed dealing with COVID-19 as a routine feature of their daily work, municipalities must prepare for future crises.
29.	Wijk, Helle, 1958 (author) Interventions and mixed methods research design for a person-centered and safe environment in old age 2020 In: Architecture for Residential Care and Ageing Communities: Spaces for Dwelling and Healthcare. - New York, NY : Routledge, 2021. : Routledge. ; , s. 241-251, s. 241-251 Book chapter (other academic/artistic)abstract This chapter focuses on interventions in physical healthcare/residential care environments in order to support person-centered and safe care for older people. The chapter discusses the mixed method research design to increase the knowledge base and follow up of outcomes of these interventions. The chapter has a nursing care perspective with a basis in the notion that the physical environment represents an important part of the nursing care. The resources and disabilities following old age should be the starting point when designing environments for older people to minimize unwanted behaviors and feelings and maximize desired ones. But how can we even further adjust the physical environment to support and to promote perception, attention and orientation, and in turn reduce stress? The aim is to contribute with evidence- and practice-based knowledge to support the developing of caring environments for older people that puts the persons and his/her demands in focus. A place where it is easy to reside, where the older people and their family members are being welcomed, can recognize themselves in the environment and feel safe, and where staff can take pride in the care given and feel satisfied with their job.
30.	Guerra, Matheus, et al. (author) Effects of a 10-Week Physical Activity Program on Asylum Seekers’ Physiological Health 2020 In: 32nd Association for Psychological Science Annual Convention. Chicago, Illinois, USA. Conference paper (other academic/artistic)abstract We evaluated the effect of a 10-week training program on physiological health among a sample of 465 asylum seekers in Sweden, most of them from Syria. We found increases on the overall maximum aerobic fitness along with body composition (e.g., skeletal muscle mass) and a decrease in body fat.
31.	Lexell, Jan, et al. (author) Rehabiliteringsmetodiken är läkarspecialitetens kärnpunkt 2021 In: Läkartidningen. - Stockholm : Läkartidningen Förlag AB. - 0023-7205 .- 1652-7518. ; 118:36-37 Journal article (peer-reviewed)
32.	Eldh, Ann Catrine, Docent, 1965-, et al. (author) Health Care Professionals' Experience of a Digital Tool for Patient Exchange, Anamnesis, and Triage in Primary Care : Qualitative Study. 2020 In: JMIR Human Factors. - Toronto, Canada : JMIR Publications. - 2292-9495. ; 7:4 Journal article (peer-reviewed)abstract BACKGROUND: Despite a growing body of knowledge about eHealth innovations, there is still limited understanding of the implementation of such tools in everyday primary care.OBJECTIVE: The objective of our study was to describe health care staff's experience with a digital communication system intended for patient-staff encounters via a digital route in primary care.METHODS: In this qualitative study we conducted 21 individual interviews with staff at 5 primary care centers in Sweden that had used a digital communication system for 6 months. The interviews were guided by narrative queries, transcribed verbatim, and subjected to content analysis.RESULTS: While the digital communication system was easy to grasp, it was nevertheless complex to use, affecting both staffing and routines for communicating with patients, and documenting contacts. Templates strengthened equivalent procedures for patients but dictated a certain level of health and digital literacy for accuracy. Although patients expected a chat to be synchronous, asynchronous communication was extended over time. The system for digital communication benefited assessments and enabled more efficient use of resources, such as staff. On the other hand, telephone contact was faster and better for certain purposes, especially when the patient's voice itself provided data. However, many primary care patients, particularly younger ones, expected digital routes for contact. To match preferences for communicating to a place and time that suited patients was significant; staff were willing to accept some nuisance from a suboptimal service-at least for a while-if it procured patient satisfaction. A team effort, including engaged managers, scaffolded the implementation process, whereas being subjected to a trial without likely success erected barriers.CONCLUSIONS: A digital communication system introduced in regular primary care involved complexity beyond merely learning how to manage the tool. Rather, it affected routines and required that both the team and the context were addressed. Further knowledge is needed about what factors facilitate implementation, and how. This study suggested including ethical perspectives on eHealth tools, providing an important but novel aspect of implementation.
33.	Faria, Vanda, et al. (author) Placebos in pediatrics : A cross-sectional survey investigating physicians' perspectives 2023 In: Journal of Psychosomatic Research. - : Elsevier. - 0022-3999 .- 1879-1360. ; 172 Journal article (peer-reviewed)abstract Objective: Placebo responses are significantly higher in children than in adults, suggesting a potential underused treatment option in pediatric care. To facilitate the clinical translation of these beneficial effects, we explored physicians' current practice, opinions, knowledge, and likelihood of recommending placebos in the future.Methods: A cross-sectional web-based survey administered by REDCap was conducted at Boston Children's Hospital between October 2021 and March 2022. Physicians (n = 1157) were invited to participate through an email containing a link to a 23-item survey designed to assess physicians' attitudes and perceptions towards the clinical use of placebo in pediatrics.Results: From 207 (18%) returned surveys, 109 (9%) were fully completed. Most respondents (79%) believed that enhancing the therapeutic components that contribute to the placebo response may be a way of improving pediatric care. However, whereas most (62%) found placebo treatments permissible, only one-third reported recommending them. In pediatrics, placebos are typically introduced as a medicine that "might help" (43%). The most common treatments recommended to enhance placebo effects are physical therapy, vitamins, and over-the-counter analgesics. Physicians most frequently recommend placebos for occasional pain, headaches, and anxiety disorders. Finally, the great majority of physicians (87%) stated they would be more likely to recommend pla-cebo treatments if there were safety and ethical guidelines for open-label placebos.Conclusions: Placebo treatments seem permissible to physicians in pediatric care, but the development of safety and ethical guidelines may be necessary before physicians systematically incorporate the benefits of the placebo effect in pediatrics.
34.	Hoffmann, Mikael, et al. (author) Guiding principles for the use of knowledge bases and real-world data in clinical decision support systems : report by an international expert workshop at Karolinska Institutet 2020 In: Expert Review of Clinical Pharmacology. - : Taylor & Francis. - 1751-2433 .- 1751-2441. ; 13:9, s. 925-934 Journal article (peer-reviewed)abstract Introduction Technical and logical breakthroughs have provided new opportunities in medicine to use knowledge bases and large-scale clinical data (real-world) at point-of-care as part of a learning healthcare system to diminish the knowledge-practice gap. Areas covered The article is based on presentations, discussions and recommendations from an international scientific workshop. Value, research needs and funding avenues of knowledge bases and access to real-world data as well as transparency and incorporation of patient perspectives are discussed. Expert opinion Evidence-based, publicly funded, well-structured and curated knowledge bases are of global importance. They ought to be considered as a public responsibility requiring transparency and handling of conflicts of interest. Information has to be made accessible for clinical decision support systems (CDSS) for healthcare staff and patients. Access to rich and real-world data is essential for a learning health care ecosystem and can be augmented by data on patient-reported outcomes and preferences. This field can progress by the establishment of an international policy group for developing a best practice guideline on the development, maintenance, governance, evaluation principles and financing of open-source knowledge bases and handling of real-world data.
35.	Humayun, Jhangir, et al. (author) Systematic review of the healthcare cost of bronchopulmonary dysplasia. 2021 In: BMJ open. - : BMJ. - 2044-6055. ; 11:8 Journal article (peer-reviewed)abstract To determine the costs directly or indirectly related to bronchopulmonary dysplasia (BPD) in preterm infants. The secondary objective was to stratify the costs based on gestational age and/or birth weight.Systematic literature review.PubMed and Scopus were searched on 3 February 2020. Studies were selected based on eligibility criteria by two independent reviewers. Included studies were further searched to identify eligible references and citations.Two independent reviewers extracted data with a prespecified data extraction sheet, including items from a published checklist for quality assessment. The costs in the included studies are reported descriptively.Costs of BPD.The 13 included studies reported the total costs or marginal costs of BPD. Most studies reported costs during birth hospitalisation (cost range: Int$21392-Int$1 094509 per child, equivalent to €19103-€977397, in 2019) and/or during the first year of life. One study reported costs during the first 2years; two other studies reported costs later, during the preschool period and one study included a long-term follow-up. The highest mean costs were associated with infants born at extremely low gestational ages. The quality assessment indicated a low risk of bias in the reported findings of included studies.This study was the first systematic review of costs associated with BPD. We confirmed previous reports of high costs and described the long-term follow-up necessary for preterm infants with BPD, particularly infants of very low gestational age. Moreover, we identified a need for studies that estimate costs outside hospitals and after the first year of life.CRD42020173234.
36.	Hägglund, Maria, Lektor, 1975-, et al. (author) Escape to the future : a qualitative study of physicians' views on the work environment, education, and support in a digital context 2023 In: BMC Medical Informatics and Decision Making. - : BioMed Central (BMC). - 1472-6947. ; 23:1 Journal article (peer-reviewed)abstract BackgroundThe use of remote services such as video consultations (VCs) has increased significantly in the wake of the COVID-19 pandemic. In Sweden, private healthcare providers offering VCs have grown substantially since 2016 and have been controversial. Few studies have focused on physicians’ experiences providing care in this context. Our aim was to study physicians’ experiences of VCs, focusing on the work environment, quality of care, and educational needs.MethodsTwenty-two semi-structured interviews were performed with physicians working with VCs in Sweden, and analyzed through inductive content analysis.ResultsWe identified five categories; flexibility, social work environment, impact on care and society, continuous learning and career development, and organizational support. Flexibility and accessibility were considered positive features of working digitally by giving physicians control over their time and workplace and increasing patients’ timely access to healthcare. Regarding collegial contact and social activities in a digital context, the majority of the participants did not experience any significant difference compared to the physical context. Access to technical support services, educational support, and collegial support in decision-making, guidance, and consultations were described as well-functioning. Satisfied patients positively impacted the work environment, and participants felt that VCs have a positive socio-economic effect. Continuity of care was considered supported, but patients did not always prioritize this. Privacy risks were considered a challenge, as were poor development of clinical skills due to the low variation of patient cases. Working for an online healthcare provider was contributing to career advancements for junior clinicians.ConclusionsPhysicians appreciate the flexibility of the digital context and seem satisfied with a work environment where they have a high level of control, but few consider this a full-time career option. The pandemic year 2020 has led to a significant increase in the implementation of VCs in traditional care systems. How this affects the work environment and continuous education needs and career development remains to be seen.
37.	Hägglund, Maria, Lektor, 1975-, et al. (author) Mobile Access and Adoption of the Swedish National Patient Portal 2020 In: Integrated Citizen Centered Digital Health and Social Care. - : IOS Press. - 9781643681443 - 9781643681450 ; 275, s. 82-86 Conference paper (peer-reviewed)abstract Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one's health record. In a retrospective analysis of real-world data from the Swedish National Patient Portal 1177.se, we describe the rate of adoption over time, as well as how patterns of device usage have changed over time. In Jan 2013, 53% of all visits were made from a computer, and 38% from a mobile phone. By June 2020, 77% of all visits were made from a mobile phone and only 20% from a computer. These results underline the importance of designing responsive patient portals that allow patients to use any device without losing functionality or usability.
38.	Hägglund, Maria, Lektor, 1975-, et al. (author) Personalized Communication : People with Hearing Loss' Experiences of Using a National Patient Portal 2020 In: Digital Personalized Health and Medicine. - : IOS Press. - 9781643680828 - 9781643680835 ; 270, s. 1031-1035 Conference paper (peer-reviewed)abstract Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one's health record. A qualitative study was therefore performed to understand how people with hearing loss experience using the Swedish national patient portal 1177.se and the patient accessible electronic health record Journalen. Data was collected through focus groups and individual interviews. Ten persons with varying degree of hearing loss, age and years of using a hearing aid participated. The data was analyzed through thematic content analysis and three themes emerged; access to written information, patient-created information and personalized communication. Although the study is limited in size, we believe that important lessons can be learned regarding the needs for personalized communication, including access to written information.
39.	Oberschmidt, Kira, et al. (author) How To Train Your Stakeholders : Skill Training In Participatory Health Research 2022 In: NordiCHI '22: Adjunct Proceedings of the 2022 Nordic Human-Computer Interaction Conference. - New York, NY, USA : ACM Digital Library. ; , s. 1-4 Conference paper (peer-reviewed)abstract Currently, health research increasingly involves diverse groups of stakeholders. Such collaborations occur on various levels, where in some cases, stakeholders become co-researchers. However, these stakeholders (e.g. patients) are not always trained in the necessary research skills. On the other hand, researchers are not trained to collaborate with stakeholders. While there is agreement that skill training should be offered as an integral part of participatory health, so far knowledge is lacking on what such a training should look like. This workshop aims to collect experiences from those who have either previously implemented stakeholder skill training or have experiences where stakeholder skill training was lacking but would have been beneficial, and facilitate the exchange of ideas between participants who are interested in the topic. The outcomes will be communicated in ways that are accessible for academic and non-academic stakeholders and will provide them with guidance for conducting stakeholder skill training.
40.	Peute, Linda W., et al. (author) Challenges and Best Practices in Ethical Review of Human and Organizational Factors Studies in Health Technology : a Synthesis of Testimonies 2020 In: IMIA Yearbook of Medical Informatics. - : Georg Thieme Verlag KG. - 0943-4747 .- 2364-0502. ; 29:1, s. 58-70 Journal article (peer-reviewed)abstract OBJECTIVE: Human and Organizational Factors (HOF) studies in health technology involve human beings and thus require Institutional Review Board (IRB) approval. Yet HOF studies have specific constraints and methods that may not fit standard regulations and IRB practices. Gaining IRB approval may pose difficulties for HOF researchers. This paper aims to provide a first overview of HOF study challenges to get IRB review by exploring differences and best practices across different countries.METHODS: HOF researchers were contacted by email to provide a testimony about their experience with IRB review and approval. Testimonies were thematically analyzed and synthesized to identify and discuss shared themes.RESULTS: Researchers from seven European countries, Argentina, Canada, Australia, and the United States answered the call. Four themes emerged that indicate shared challenges in legislation, IRB inefficiencies and inconsistencies, general regulation and costs, and lack of HOF study knowledge by IRB members. We propose a model for IRB review of HOF studies based on best practices.CONCLUSION: International criteria are needed that define low and high-risk HOF studies, to allow identification of studies that can undergo an expedited (or exempted) process from those that need full IRB review. Enhancing IRB processes in such a way would be beneficial to the conduct of HOF studies. Greater knowledge and promotion of HOF methods and evidence-based HOF study designs may support the evolving discipline. Based on these insights, training and guidance to IRB members may be developed to support them in ensuring that appropriate ethical issues for HOF studies are considered.
41.	Rivano Fischer, Marcelo, et al. (author) Variability in patient characteristics and service provision of interdisciplinary pain rehabilitation : a study using the Swedish national quality registry for pain rehabilitation 2020 In: Journal of Rehabilitation Medicine. - : Foundation for Rehabilitation Information. - 1650-1977 .- 1651-2081. ; 52:11 Journal article (peer-reviewed)abstract Objective: To describe the organization, content and dosage of interdisciplinary pain rehabilitation, and the differences in degree of severity of problems of patients admitted to clinical units reporting to a Swedish national quality pain registry, grouped according to unit size and possible affiliation with a university hospital.Methods: Reports from 31 out of 39 clinical units in Sweden, on inclusion processes, organization, content and dosage of interdisciplinary pain rehabilitation, and patient-reported data from a Swedish national quality pain registry at assessment for interdisciplinary pain rehabilitation were analysed.Results: the number of patients treated annually at each unit ranged from 3 to 340. In 17 units, teams comprised 5 professionals. Dosage of interdisciplinary pain rehabilitation ranged from 20-180 h per patient in total. Patients at the university-hospital units scored the highest levels of symptoms and lowest levels of health related quality of life. Units used similar sets of inclusion criteria, and several treatments, such as education, self-training and psychological interventions, were used by most units.Conclusion: When interpreting outcome data from registries, aspects other than rehabilitation out-comes must be considered. The interpretation of outcomes from quality registries would be facilitated if data, in addition to assessments and patient reported outcomes, also includes standardized descriptions of the reporting clinical units.
42.	Baxter, Rebecca, et al. (author) COVID-19 : Opportunities for interdisciplinary research to improve care for older people in Sweden 2021 In: Scandinavian Journal of Public Health. - : Sage Publications. - 1403-4948 .- 1651-1905. ; 49:1, s. 29-32 Journal article (peer-reviewed)abstract The emergence of COVID-19 has changed the world as we know it, arguably none more so than for older people. In Sweden, the majority of COVID-19-related fatalities have been among people aged ⩾70 years, many of whom were receiving health and social care services. The pandemic has illuminated aspects within the care continuum requiring evaluative research, such as decision-making processes, the structure and organisation of care, and interventions within the complex public-health system. This short communication highlights several key areas for future interdisciplinary and multi-sectorial collaboration to improve health and social care services in Sweden. It also underlines that a valid, reliable and experiential evidence base is the sine qua non for evaluative research and effective public-health systems.
43.	Van Bulck, Liesbet, et al. (author) Healthcare system inputs and patient-reported outcomes : a study in adults with congenital heart defect from 15 countries 2020 In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1 Journal article (peer-reviewed)abstract BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease.METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed.CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn.TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.
44.	Jonsdottir, Ingibjörg H, 1966, et al. (author) A pre/post analysis of the impact of the COVID-19 pandemic on the psychosocial work environment and recovery among healthcare workers in a large university hospital in Sweden 2021 In: Journal of Public Health Research. - : SAGE Publications. - 2279-9028 .- 2279-9036. ; 10:4 Journal article (peer-reviewed)abstract Background: The impact of the COVID-19 pandemic on workload, mental health, and well-being of healthcare workers, and particularly those on the front-line, has received considerable attention. Design and methods: We surveyed hospital employees about their working environment during the pandemic and identified departments which were negatively affected in comparison to the pre-pandemic situation, as well as factors contributing to this. Setting and participants We surveyed all hospital employees at Sahlgrenska University Hospital, Sweden in September 2020 and compared results across departments and to the results of a large employee survey from October 2019. Results: The overall impact of the pandemic on perceived working conditions and possibility for recovery differed among departments. During the pandemic, healthcare workers working with COVID-19 patients reported poorer working environments than other employees. Factors significantly related to perception of work environment and recovery during the pandemic included worries of being infected, departmental transfer, and having insufficient access to personal protective equipment. Men reported better working conditions than women in all, but one item and higher age was related to better perceived working environment. Conclusions: Our results indicate that the pandemic differentially affects hospital departments and underscores the multifactorial nature of this topic. Contributing factors to poor perceived working environment could be addressed at times of high workload, such as during the pandemic, including providing appropriate support to managers, ensuring possibility for recovery during working hours, and acknowledging worries about infection. Young healthcare workers and staff who are relocated due to the pandemic warrant special attention.
45.	Eiermann, Birgit, et al. (author) Läkemedelsinformatik 2021 In: Medicinsk informatik. - Stockholm : Liber. - 9789147134083 ; , s. 245-261 Book chapter (other academic/artistic)abstract Kapitlet ger en översikt av kunskapsläget inom läkemedelsinformatik, med fokus på Sverige.
46.	Lazzerini, Marzia, et al. (author) Quality of facility-based maternal and newborn care around the time of childbirth during the COVID-19 pandemic : online survey investigating maternal perspectives in 12 countries of the WHO European Region 2022 In: The Lancet regional health. Europe. - : Elsevier BV. - 2666-7762. ; 13 Journal article (peer-reviewed)abstract Background: Multi-country studies assessing the quality of maternal and newborn care (QMNC) during the COVID-19 pandemic, as defined by WHO Standards, are lacking.Methods: Women who gave birth in 12 countries of the WHO European Region from March 1, 2020 - March 15, 2021 answered an online questionnaire, including 40 WHO Standard-based Quality Measures.Findings: 21,027 mothers were included in the analysis. Among those who experienced labour (N=18,063), 41·8% (26·1%- 63·5%) experienced difficulties in accessing antenatal care, 62% (12·6%-99·0%) were not allowed a companion of choice, 31·1% (16·5%-56·9%) received inadequate breastfeeding support, 34·4% (5·2%-64·8%) reported that health workers were not always using protective personal equipment, and 31·8% (17·8%-53·1%) rated the health workers' number as "insufficient". Episiotomy was performed in 20·1% (6·1%-66·0%) of spontaneous vaginal births and fundal pressure applied in 41·2% (11·5% -100%) of instrumental vaginal births. In addition, 23·9% women felt they were not treated with dignity (12·8%-59·8%), 12·5% (7·0%-23·4%) suffered abuse, and 2·4% (0·1%-26·2%) made informal payments. Most findings were significantly worse among women with prelabour caesarean birth (N=2,964). Multivariate analyses confirmed significant differences among countries, with Croatia, Romania, Serbia showing significant lower QMNC Indexes and Luxemburg showing a significantly higher QMNC Index than the total sample. Younger women and those with operative births also reported significantly lower QMNC Indexes.Interpretation: Mothers reports revealed large inequities in QMNC across countries of the WHO European Region. Quality improvement initiatives to reduce these inequities and promote evidence-based, patient-centred respectful care for all mothers and newborns during the COVID-19 pandemic and beyond are urgently needed.Funding: The study was financially supported by the Institute for Maternal and Child Health IRCCS Burlo Garofolo, Trieste, Italy.Study registration: ClinicalTrials.gov Identifier: NCT04847336.
47.	Remus, A., et al. (author) A core outcome set for research and clinical practice in women with pelvic girdle pain: PGP-COS 2021 In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 16:2 Journal article (peer-reviewed)abstract Background Inconsistent reporting of outcomes in clinical trials of women with Pelvic Girdle Pain (PGP) hinders comparison of findings and the reliability of evidence synthesis. A core outcome set (COS) can address this issue as it defines a minimum set of outcomes that should be reported in all clinical trials on the condition. The aim of this study was to develop a consensus-based COS for evaluating the effectiveness of interventions in PGP during pregnancy and postpartum for use in research and clinical practice. Methods A systematic review of previous studies on PGP and semi-structured interviews with women were undertaken to identify all outcomes that were reported in prior studies and that are relevant to those experiencing the condition. Key stakeholders (clinicians, researchers, service providers/policy makers and individuals with PGP) then rated the importance of these outcomes for including in a preliminary PGP-COS using a 3-round Delphi study. The final COS was agreed at a face-to-face consensus meeting. Results Consensus was achieved on five outcomes for inclusion in the final PGP-COS. All outcomes are grouped under the "life impact" domain and include: pain frequency, pain intensity/severity, function/disability/activity limitation, health-related quality of life and fear avoidance. Conclusion This study identified a COS for evaluating the effectiveness of interventions in pregnancy-related and postpartum-related PGP in research and clinical settings. It is advocated that all trials, other non-randomised studies and clinicians in this area use this COS by reporting these outcomes as a minimum. This will ensure the reporting of meaningful outcomes and will enable the findings of future studies to be compared and combined. Future work will determine how to measure the outcomes of the PGP-COS. Core outcome set registration This PGP-COS was registered with COMET (Core Outcome Measures for Effectiveness Trials) in January 2017 (http://www.comet-initiative.org/studies/details/958).
48.	Bellander, Lisa, et al. (author) Oral assessment and preventive actions within the swedish quality register senior alert: Impact on frail older adults’ oral health in a longitudinal perspective 2021 In: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 18:24 Journal article (peer-reviewed)abstract Poor oral health is common among older people in nursing homes. To identify and prevent oral health problems among the residents, ROAG-J (Revised Oral Assessment Guide–Jönköping), a risk-assessment instrument, is used by nursing staff routinely, and the outcome is registered in the web-based Swedish quality register Senior Alert. This study aims to investigate the preventive actions registered when oral health problems are identified and the effect of these actions longitudinally. ROAG-J data registered at nursing homes in Sweden during 2011–2016 were obtained from the Senior Alert database. Out of 52,740 residents (≥65 years), 41% had oral health problems, of whom 62% had preventive actions registered. The most common action was “Assistance with cleaning teeth”. Longitudinally, during the five-year observation period, a slight increase in oral health problems assessed with ROAG-J was found. Registered preventive actions, however, led to significant improvement in the subsequent assessment for the ROAG items lips, tongue, and dentures. Standardised risk assessments like ROAG-J provide an opportunity to detect problems early and establish preventive actions. The study, however, indicates a further need for structured education and a continuous follow-up in ROAG-J. Moreover, increased collaboration between nursing and dental care to improve oral health for older residents at nursing homes is needed.
49.	Chalfont, Garuth, et al. (author) Designing with nature for ageing: Health-related effects in care settings 2020 In: Architecture for Residential Care and Ageing Communities: Spaces for Dwelling and Healthcare. - New York, NY : Routledge, 2021. : Routledge. ; , s. 189-201 Book chapter (other academic/artistic)abstract Drawing on international research and practice, this chapter highlights how designing with nature improves care and health for ageing. We outline the benefits of nature and outdoors to care settings, architecture’s crucial role in ‘edge spaces’ and site design, plus give brief UK design examples from extra-care housing, dementia nursing care and hospice. Furthermore, we identify tools to assess and improve care settings to better support dementia green care. Scientific evidence is driving a resurgence in nature-enhanced hospital design. Gardens with pleasant views and other sensory stimulation provide psychological and physiological restoration from stress and clinically significant reduction of pain. Well-designed gardens can entice patients into movement, physical activity or rehabilitation by providing access to social support, privacy, and positive nature distraction. Families as well as patients report reduced stress, enhanced emotional well-being, and higher satisfaction with care quality, while hospital staff experience lowered work-related stress and burnout. The chapter ends with evidence-informed guidelines for designing hospitals with nature.
50.	Dahlin, Sara, 1980 (author) Exploring the usefulness of Lexis diagrams for quality improvement 2020 In: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 20:1 Journal article (peer-reviewed)abstract Background: Visualization is important to aid practitioners in understanding local care processes and drive quality improvement (QI). Important aspects include timely feedback and ability to plot data over time. Moreover, the complexity of care also needs to be understood, as it affects the variation of care processes. However, there is a lack of QI methods visualizing multiple, related factors such as diagnosis date, death date, and cause of death to unravel their complexity, which is necessary to understand processes related to survival data. Lexis diagrams visualize individual patient processes as lines and mark additional factors such as key events. This study explores the potential of Lexis diagrams to support QI through survival data analysis, focusing on feedback, timeliness, and complexity, in a gynecological cancer setting in Sweden. Methods: Lexis diagrams were produced based on data from a gynecological cancer quality registry (4481 patients). The usefulness of Lexis diagrams was explored through iterative data identification and analysis through semi-structured dialogues between the researcher and domain experts (clinically active care process owners) during five meetings. Visualizations were produced and adapted by the researcher between meetings, based on the dialogues, to ensure clinical relevance, resulting in three relevant types of visualizations. Results: Domain experts identified different uses depending on diagnosis group and data visualization. Key results include timely feedback through close-to-real-time visualizations, supporting discussion and understanding of trends and hypothesis-building. Visualization of care process complexity facilitated evaluation of given care. Combined visualization of individual and population levels increased patient focus and may possibly also function to motivate practitioners and management. Conclusion: Lexis diagrams can aid understanding of survival data, triggering important dialogues between care givers and supporting care quality improvement and new perspectives, and can therefore complement survival curves in quality improvement.

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