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1.	Flink, Maria, et al. (författare) Measuring care transitions in Sweden : validation of the care transitions measure 2018 Ingår i: International Journal for Quality in Health Care. - : Oxford University Press. - 1353-4505 .- 1464-3677. ; 30:4, s. 291-297 Tidskriftsartikel (refereegranskat)abstract Objective: To translate and assess the validity and reliability of the original American Care Transitions Measure, both the 15-item and the shortened 3-item versions, in a sample of people in transition from hospital to home within Sweden.Design: Translation of survey items, evaluation of psychometric properties.Setting: Ten surgical and medical wards at five hospitals in Sweden.Participants: Patients discharged from surgical and medical wards.Main outcome measure: Psychometric properties of the Swedish versions of the 15-item (CTM-15) and the 3-item (CTM-3) Care Transition Measure.Results: We compared the fit of nine models among a sample of 194 Swedish patients. Cronbach's alpha was 0.946 for CTM-15 and 0.74 for CTM-3. The model indices for CTM-15 and CTM-3 were strongly indicative of inferior goodness-of-fit between the hypothesized one-factor model and the sample data. A multidimensional three-factor model revealed a better fit compared with CTM-15 and CTM-3 one factor models. The one-factor solution, representing 4 items (CTM-4), showed an acceptable fit of the data, and was far superior to the one-factor CTM-15 and CTM-3 and the three-factor multidimensional models. The Cronbach's alpha for CTM-4 was 0.85.Conclusions: CTM-15 with multidimensional three-factor model was a better model than both CTM-15 and CTM-3 one-factor models. CTM-4 is a valid and reliable measure of care transfer among patients in medical and surgical wards in Sweden. It seems the Swedish CTM is best represented by the short Swedish version (CTM-4) unidimensional construct.
2.	Ahmadi, Zainab, et al. (författare) Smoking and home oxygen therapy : a review and consensus statement from a multidisciplinary Swedish taskforce 2024 Ingår i: European Respiratory Review. - : European Respiratory Society. - 0905-9180 .- 1600-0617. ; 33:171 Forskningsöversikt (refereegranskat)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.
3.	Axelsson, Bertil, et al. (författare) Bostadsort avgör den palliativa vårdens resurser och kvalitet : Satsningar för att öka kompetensen behövs 2016 Ingår i: Läkartidningen. - : Läkartidningen Förlag. - 0023-7205 .- 1652-7518. ; 113:47 Tidskriftsartikel (refereegranskat)abstract Access to palliative care is unequally distributed across Sweden and thus does not meet the needs. The holistic perspective of palliative care is sometimes contrasted with the usual medical focus on organ failure and disease. Palliative consultation teams provide specialist palliative care competencies for staff caring for patients in primary care, nursing homes and in hospitals. Efforts to increase knowledge and skills in palliative care is needed at undergraduate university level and through postgraduate and specialist training. Well organized cooperation between municipalities, county councils and primary care is crucial for patients in the final stages of life.
4.	Axelsson, Lena, et al. (författare) Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life 2018 Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244 Tidskriftsartikel (refereegranskat)abstract Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
5.	Beernaert, Kim, et al. (författare) Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents : A Population-Based Survey Study 2017 Ingår i: Journal of Clinical Oncology. - : American Society of Clinical Oncology. - 0732-183X .- 1527-7755. ; 35:27, s. 3136-3142 Tidskriftsartikel (refereegranskat)abstract Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
6.	Berg, Marie, 1955, et al. (författare) Room4Birth - the effect of an adaptable birthing room on labour and birth outcomes for nulliparous women at term with spontaneous labour start: study protocol for a randomised controlled superiority trial in Sweden 2019 Ingår i: Trials. - : Springer Science and Business Media LLC. - 1745-6215 .- 1745-6215. ; 20:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: An important prerequisite for optimal healthcare is a secure, safe and comfortable environment. There is little research on how the physical design of birthing rooms affects labour, birth, childbirth experiences and birthing costs. This protocol outlines the design of a randomised controlled superiority trial (RCT) measuring and comparing effects and experiences of two types of birthing rooms, conducted in one labour ward in Sweden. METHODS/DESIGN: Following ethics approval, a study design was developed and tested for feasibility in a pilot study, which led to some important improvements for conducting the study. The main RCT started January 2019 and includes nulliparous women presenting to the labour ward in active, spontaneous labour and who understand either Swedish, Arabic, Somali or English. Those who consent are randomised on a 1:1 ratio to receive care either in a regular room (control group) or in a newly built birthing room designed with a person-centred approach and physical aspects (such as light, silencer, media installation offering programmed nature scenes with sound, bathtub, birth support tools) that are changeable according to a woman's wishes (intervention group). The primary efficacy endpoint is a composite score of four outcomes: no use of oxytocin for augmentation of labour; spontaneous vaginal births (i.e. no vaginal instrumental birth or caesarean section); normal postpartum blood loss (i.e. bleeding < 1000 ml); and a positive overall childbirth experience (7-10 on a scale of 1-10). To detect a difference in the composite score of 8% between the groups we need 1274 study participants (power of 80% with significance level 0.05). Secondary outcomes include: the four variables in the primary outcome; other physical outcomes of labour and birth; women's self-reported experiences (the birthing room, childbirth, fear of childbirth, health-related quality of life); and measurement of costs in relation to the hospital stay for mother and neonate. Additionally, an ethnographic study with participant observations will be conducted in both types of birthing rooms. DISCUSSION: The findings aim to guide the design of birthing rooms that contribute to optimal quality of hospital-based maternity care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03948815. Registered 13 May 2019-retrospectively registered.
7.	Berlin, Johan, 1975- (författare) Teamarbete : ett livsviktigt samspel 2013. - 1 Ingår i: Sjuksköterskans kärnkompetenser. - Stockholm : Liber. - 9789147105687 ; , s. 159-177 Bokkapitel (refereegranskat)
8.	de Bekker-Grob, Esther, et al. (författare) Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle : The PREFER Public–Private Project 2017 Ingår i: Patient. - : Springer. - 1178-1653 .- 1178-1661. ; 10:3, s. 263-266 Tidskriftsartikel (refereegranskat)
9.	Eerola, Paula, et al. (författare) Accelerator-based infrastructures in the fields of particle and nuclear physics 2020 Rapport (övrigt vetenskapligt/konstnärligt)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.
10.	Ekman, Björn, et al. (författare) Utilization of digital primary care in Sweden : Descriptive analysis of claims data on demographics, socioeconomics, and diagnoses 2019 Ingår i: International Journal of Medical Informatics. - : Elsevier. - 1386-5056 .- 1872-8243. ; 127, s. 134-140 Tidskriftsartikel (refereegranskat)abstract Objective: As digital technologies for health continue to develop, the ability to provide primary care services to patients with new symptoms will grow. In Sweden, two providers of digital primary care have expanded rapidly over the past years giving rise to a heated debate with clear policy implications. The purpose of the study is to present a descriptive review of digital primary care as currently under development in Sweden.Methods: Descriptive analysis of national coverage data on the utilization of digital care by sex, age, place of residence, socioeconomic status, and most common diagnoses. The data are compared with samples of corresponding data on traditional, office-based primary care, out-of-hours care, and on non-emergency telephone consultations to obtain a comparative analysis of digital care.Results: Digital primary care in Sweden has increased rapidly over the past two years. Currently, more than 30,000 digital consultations are made per month, equivalent to around two percent of all physician-led primary care. Digital care differs in some ways to that of traditional care as users are generally younger and seek for different conditions compared with office-based primary care. Digital care is also similar to traditional care as utilization is higher in metropolitan areas compared with rural areas. Similar to general health care use, there is a negative correlation between use of digital care and socioeconomic status. User profiles by age and sex of digital care are also similar to those of out-of-hours care and non-emergency telephone medical consultations.Conclusions: By providing a detailed description of the development of digital primary care the study contributes to a growing understanding of the contributions that digital technologies can make to health care. Based on current trends digital primary care is likely to continue to increase in frequency over the coming years. As technologies develop and the public becomes more familiar to interacting with medical providers over the Internet also the scope of digital care is likely to expand. As the provision of digital primary care expands across Europe and beyond, policy makers will need to develop regulating capacities to ensure its safe, effective and equitable integration into existing health systems.
11.	Eldh, Ann Catrine, Docent, 1965-, et al. (författare) Health Care Professionals' Experience of a Digital Tool for Patient Exchange, Anamnesis, and Triage in Primary Care : Qualitative Study. 2020 Ingår i: JMIR Human Factors. - Toronto, Canada : JMIR Publications. - 2292-9495. ; 7:4 Tidskriftsartikel (refereegranskat)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.
12.	Faria, Vanda, et al. (författare) Placebos in pediatrics : A cross-sectional survey investigating physicians' perspectives 2023 Ingår i: Journal of Psychosomatic Research. - : Elsevier. - 0022-3999 .- 1879-1360. ; 172 Tidskriftsartikel (refereegranskat)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.
13.	Fläckman, Birgitta, et al. (författare) Consequences of working in elder care during changes and cutbacks in the organisation while education and clinical supervision was provided : A mixed methods study 2015 Ingår i: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5336 .- 2162-5344. ; 5:9, s. 813-827 Tidskriftsartikel (refereegranskat)abstract Background: Reorganization and downsizing can disrupt a competent staff and conflicts can arise between what the employee is being asked to do and their knowledge and competences. Reduced job satisfaction among nursing home staff with increased workload and strain can occur. Aim and Objectives: The aim was to investigate the organizational climate and prevalence of burnout symptoms among caregivers over time in three Swedish nursing homes (NH I-III) undergoing organizational changes, while education and clinical supervision were provided. Design: The study design combines qualitative and quantitative methods in a longitudinal two-year follow-up project in NH I-III. Methods: Support through education and clinical supervision was provided for caregivers only at NH I and NH II. At NH I-III caregiver self-assessments and interviews were completed and analysed three different times. Results: NH I revealed improvement and increased innovation over time, while NH II showed a decline with no ability to implement new knowledge. NH III retained a more status quo. Conclusions: Organizational changes and cutbacks, occurring at different times, appeared to cause major stress and frustration among the three personnel groups. They felt guilty about not meeting their perceived obligations, seemed to have lost pride in their work but kept struggling. The changes seemed to over-shadow attempts to improve working conditions through education and clinical supervision initially. Implications for practice: It will be important to learn from reorganizations and the consequences they will have for the staff and quality of care. Important topics for future research are to study financial cutbacks and changes in organizational processes in care of older people to be able to develop a more person centered care for older people.
14.	Girma Kebede, Betlehem, et al. (författare) Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia 2020 Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3 Tidskriftsartikel (refereegranskat)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.
15.	Henoch, Ingela, 1956, et al. (författare) Equal palliative care for patients with COPD? A nationwide register study 2019 Ingår i: Upsala Journal of Medical Sciences. - : Uppsala Medical Society. - 0300-9734 .- 2000-1967. ; 124:2, s. 140-147 Tidskriftsartikel (refereegranskat)abstract Background: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided. Methods: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care. Results: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p < 0.001). Younger age and co-habiting increased the probability of dying in SPC (p < 0.001). Conclusion: Despite similar symptom prevalence, older persons are more likely to be referred to NHs. If applying a palliative care philosophy in NHs, routine symptom assessment and prescription of rescue medication for frequent symptoms, would be more likely. Promoting advance care planning and EOL discussions at an earlier stage would result in more prepared patients and families. © 2019, © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
16.	Hoffmann, Mikael, et al. (författare) 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 Ingår i: Expert Review of Clinical Pharmacology. - : Taylor & Francis. - 1751-2433 .- 1751-2441. ; 13:9, s. 925-934 Tidskriftsartikel (refereegranskat)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.
17.	Humayun, Jhangir, et al. (författare) Systematic review of the healthcare cost of bronchopulmonary dysplasia. 2021 Ingår i: BMJ open. - : BMJ. - 2044-6055. ; 11:8 Tidskriftsartikel (refereegranskat)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.
18.	Hägglund, Maria, Lektor, 1975-, et al. (författare) Escape to the future : a qualitative study of physicians' views on the work environment, education, and support in a digital context 2023 Ingår i: BMC Medical Informatics and Decision Making. - : BioMed Central (BMC). - 1472-6947. ; 23:1 Tidskriftsartikel (refereegranskat)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.
19.	Hägglund, Maria, Lektor, 1975-, et al. (författare) Mobile Access and Adoption of the Swedish National Patient Portal 2020 Ingår i: Integrated Citizen Centered Digital Health and Social Care. - : IOS Press. - 9781643681443 - 9781643681450 ; 275, s. 82-86 Konferensbidrag (refereegranskat)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.
20.	Hägglund, Maria, Lektor, 1975-, et al. (författare) Patients’ access to health records 2019 Ingår i: The BMJ. - : BMJ. - 1756-1833 .- 0959-8138. ; 367 Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract Patients and clinicians are equally frustrated by the slow pace of changeThe international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation. In the United States, the philanthropic OpenNotes initiative works to increase transparency by encouraging healthcare organisations to provide patients with access to notes in their electronic health record. It began in 2010 as a pilot that included 105 volunteer primary care providers and their 19 000 patients and has since spread throughout the US, with more than 200 organisations offering roughly 41 million patients access to their clinical notes. In Sweden, the first region-wide implementation of patient access to electronic health records was in 2012, more than 10 years after the first pilot study. All 21 Swedish regions have now offered this e-service through a national patient portal that integrates with all electronic health record systems currently used in Sweden. More than 3 million people (>30% of the population) had accessed their records online by August 2019, and more than 2 million logins occur each month.Similar patient accessible electronic record systems are implemented in other countries, though different strategies and approaches have influenced uptake and impact. Progress has been slow because of legal constraints, technical challenges, and concerns or resistance among healthcare professionals. Low rates of adoption among patients have also been a problem in some areas. Nonetheless, research evidence reports positive outcomes among patients accessing their records, and the concerns expressed by healthcare professionals have not been realised. Patients who read their notes report understanding their care plans better, feeling more in control of their care, doing a better job taking their medications, improved communication with and trust in their clinicians, and improved patient safety.
21.	Hägglund, Maria, Lektor, 1975-, et al. (författare) Personalized Communication : People with Hearing Loss' Experiences of Using a National Patient Portal 2020 Ingår i: Digital Personalized Health and Medicine. - : IOS Press. - 9781643680828 - 9781643680835 ; 270, s. 1031-1035 Konferensbidrag (refereegranskat)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.
22.	Jäderlund Hagstedt, Lovisa, et al. (författare) Impact of the Covid-19 pandemic on use of Video consultations in a Swedish Primary care setting 2022 Ingår i: Proceedings of the 18th Scandinavian Conference on Health Informatics. - : Linköping University Electronic Press. - 9789179293444 ; , s. 212-213 Konferensbidrag (refereegranskat)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.
23.	Klinthäll, Martin, 1967-, et al. (författare) Migration and health : A study of effects of early life experiences and current socio-economic situation on mortality of immigrants in Sweden 2011 Ingår i: Ethnicity and Health. - London : Taylor & Francis. - 1355-7858 .- 1465-3419. ; 16:6, s. 601-623 Tidskriftsartikel (refereegranskat)abstract Objectives. Previous research has demonstrated mortality differences between immigrants and natives living in Sweden. The aim of this study is to investigate the effects of early life conditions in the country of birth and current socio-economic conditions in adult life in Sweden on cardiovascular, cancer, all other cause and total mortality among immigrants and natives in Sweden.Design. The cohort data concerning individual demographic characteristics and socio-economic conditions stems from the Swedish Longitudinal Immigrant Database (SLI), a register-based representative database, and consists of individuals from 11 countries of birth, born between 1921 and 1939, who were residents in Sweden between 1980 and 2001. The associations between current socio-economic conditions as well as infant mortality rates (IMR) and Gross Domestic Product (GDP) per capita in the year and country of birth, and total, cardiovascular, cancer and ‘all other’ mortality in 1980–2001 were calculated by survival analysis using Cox proportional hazards regression to calculate hazard rate ratios.Results. The effects of current adult life socio-economic conditions in Sweden on mortality are both stronger and more straightforward than the effects of early life conditions in the sense that higher socio-economic status is significantly associated with lower mortality in all groups of diagnoses; however, we find associations between infant mortality rates (IMR) in the year and country of birth, and cancer mortality among men and women in the final model.Conclusions. Socioeconomic conditions in Sweden are more strongly associated with mortality than early life indicators IMR and GDP per capita in the year of birth in the country of origin. This finding has health policy and other policy implications.
24.	Liljeroos, Maria (författare) Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention 2017 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
25.	Lind, Susanne, et al. (författare) Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study 2018 Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 16:6, s. 698-705 Tidskriftsartikel (refereegranskat)abstract Objective: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.Method: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.Result: Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units.Significance of the results: The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.
26.	Magnusson, Carl, 1976, et al. (författare) The final assessment and its association with field assessment in patients who were transported by the emergency medical service 2018 Ingår i: Scandinavian Journal of Trauma Resuscitation & Emergency Medicine. - : Springer Science and Business Media LLC. - 1757-7241. ; 26 Tidskriftsartikel (refereegranskat)abstract BackgroundIn patients who call for the emergency medical service (EMS), there is a knowledge gap with regard to the final assessment after arriving at hospital and its association with field assessment.AimIn a representative population of patients who call for the EMS, to describe a) the final assessment at hospital discharge and b) the association between the assessment in the field and the assessment at hospital discharge.MethodsThirty randomly selected patients reached by a dispatched ambulance each month between 1 Jan and 31 Dec 2016 in one urban, one rural and one mixed ambulance organisation in Sweden took part in the study. The exclusion criteria were age<18years, dead on arrival, transport between health-care facilities and secondary missions. Each patient received a unique code based on the ICD code at hospital discharge and field assessment.ResultsIn all, 1080 patients took part in the study, of which 1076 (99.6%) had a field assessment code. A total of 894 patients (83%) were brought to a hospital and an ICD code (ICD-10-SE) was available in 814 patients (91% of these cases and 76% of all cases included in the study). According to these ICD codes, the most frequent conditions were infection (15%), trauma (15%) and vascular disease (9%). The most frequent body localisation of the condition was the thorax (24%), head (16%) and abdomen (13%). In 118 patients (14% of all ICD codes), the condition according to the ICD code was judged as time critical. Among these cases, field assessment was assessed as potentially appropriate in 75% and potentially inappropriate in 12%.ConclusionAmong patients reached by ambulance in Sweden, 83% were transported to hospital and, among them, 14% had a time-critical condition. In these cases, the majority were assessed in the field as potentially appropriate, but 12% had a potentially inappropriate field assessment. The consequences of these findings need to be further explored.
27.	Magnusson, Lina, et al. (författare) Mobility and satisfaction with lower-limb prostheses and orthoses among users in Sierra Leone: A cross-sectional study 2014 Ingår i: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1651-2081 .- 1650-1977. ; 46:5, s. 438-446 Tidskriftsartikel (refereegranskat)abstract Objectives: To investigate patients' mobility and satisfaction with their lower-limb prosthetic or orthotic device and related service delivery in Sierra Leone; to compare groups of patients regarding type and level of assistive device, gender, area of residence, income; and to identify factors associated with satisfaction with the assistive device and service. Methods: A total of 139 patients answered questionnaires, including the Quebec User Evaluation of Satisfaction with Assistive Technology questionnaire (QUEST 2.0). Results: Eighty-six percent of assistive devices were in use, but half needed repair. Thirty-three percent of patients reported pain when using their assistive device. Patients had difficulties or could not walk at all on: uneven ground (65%); hills (75%); and stairs (66%). Patients were quite satisfied with their assistive device and the service (mean 3.7 out of 5 in QUEST), but reported 886 problems. Approximately half of the patients could not access services. In relation to mobility and service delivery, women, orthotic patients and patients using above-knee assistive devices had the poorest results. The general condition of the assistive device and patients' ability to walk on uneven ground were associated with satisfaction with the assistive devices and service. Conclusion: Patients reported high levels of mobility while using their device although they experienced pain and difficulties walking on challenging surfaces. Limitations in the effectiveness of assistive devices and limited access to follow-up services and repairs were issues desired to be addressed.
28.	Maneschiöld, Per-Ola, et al. (författare) Nursing assistant's perceptions of the good work environment in municipal elderly care in Sweden –a focus group study 2021 Ingår i: Journal of health organization and management. - : Emerald Group Publishing Limited. - 1477-7266 .- 1758-7247. ; 35:9, s. 163-177 Tidskriftsartikel (refereegranskat)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.
29.	Markovic, Gabriela, et al. (författare) STATISTICAL PROCESS CONTROL: A FEASIBILITY STUDY OF THE APPLICATION OF TIME-SERIES MEASUREMENT IN EARLY NEUROREHABILITATION AFTER ACQUIRED BRAIN INJURY 2017 Ingår i: Journal of Rehabilitation Medicine. - : FOUNDATION REHABILITATION INFORMATION. - 1650-1977 .- 1651-2081. ; 49:2, s. 128-135 Tidskriftsartikel (refereegranskat)abstract Background: Progress in early cognitive recovery after acquired brain injury is uneven and unpredictable, and thus the evaluation of rehabilitation is complex. The use of time-series measurements is susceptible to statistical change due to process variation. Objective: To evaluate the feasibility of using a time-series method, statistical process control, in early cognitive rehabilitation. Method: Participants were 27 patients with acquired brain injury undergoing interdisciplinary rehabilitation of attention within 4 months post-injury. The outcome measure, the Paced Auditory Serial Addition Test, was analysed using statistical process control. Results: Statistical process control identifies if and when change occurs in the process according to 3 patterns: rapid, steady or stationary performers. The statistical process control method was adjusted, in terms of constructing the baseline and the total number of measurement points, in order to measure a process in change. Conclusion: Statistical process control methodology is feasible for use in early cognitive rehabilitation, since it provides information about change in a process, thus enabling adjustment of the individual treatment response. Together with the results indicating discernible subgroups that respond differently to rehabilitation, statistical process control could be a valid tool in clinical decision-making. This study is a starting-point in understanding the rehabilitation process using a real-time-measurements approach.
30.	Munthe, Christian, 1962 (författare) A New Ethical Landscape of Prenatal Testing: Individualizing Choice to Serve Autonomy and Promote Public Health: A Radical Proposal 2015 Ingår i: Bioethics. - : Wiley. - 0269-9702 .- 1467-8519. ; 29:1, s. 36-45 Tidskriftsartikel (refereegranskat)abstract A new landscape of prenatal testing (PNT) is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development supports a radical individualization of how PNT screening is organized. This reformation is, at the same time, difficult to reconcile with responsible spending of resources in a publicly funded healthcare context. Thus, while the ethical imperative of individualization holds and applies to PNT, the new landscape of PNT provides reasons to start rolling back the type of mass-screening programmes currently established in many countries. Instead, more limited offers are suggested, based on considerations of severity of conditions and optimized to simultaneously serve reproductive autonomy and public health within an acceptable frame of priorities. The new landscape of PNT furthermore underscores the ethical importance of supporting and including people with disabilities. For the very same reason, no ban on what may be analysed using PNT in the new landscape should be applied, although private offers must, of course, conform to strict requirements of respecting reproductive autonomy and what that means in terms of counselling.
31.	Munthe, Christian, 1962 (författare) A NEW ETHICAL LANDSCAPE OF PRENATALTESTING: Individualising Choice for Reproductive Autonomy – A Radical Proposal 2013 Ingår i: Individualized Choice: A New Approach to Reproductive Autonomy in Prenatal Screening, Brocher Foundation, geneva, April 4-5, 2013. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
32.	Munthe, Christian, 1962 (författare) Den (kommande) nya fosterdiagnostiken (och den gamla): Etiska aspekter : The (coming) new prenatal testing (and the old one): Ethical aspects 2014 Ingår i: Medicinska Riksstämman, symposium om den nya fosterdiagnistiken, Stockholm, 4 December, 2014.. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
33.	Munthe, Christian, 1962 (författare) Etik och ärftlighet: exemplet cancer : Ethics and heredity: the case of cancer 2009 Ingår i: The Karlstad Meeting on Oncological Care and Medicine, Karlstad, February 28, 2009. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
34.	Munthe, Christian, 1962 (författare) Preimplantation Genetic Diagnosis: Ethical Aspects 2003 Ingår i: Nature Encyclopedia of the Human Genome (London: Nature Publishing Group). Forskningsöversikt (refereegranskat)
35.	Munthe, Christian, 1962 (författare) Will IVF ever be the norm? 2014 Ingår i: Future of IVF - A Brave New World? ESHRE symposium, September 26-27, Stockholm. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
36.	Oberschmidt, Kira, et al. (författare) How To Train Your Stakeholders : Skill Training In Participatory Health Research 2022 Ingår i: NordiCHI '22: Adjunct Proceedings of the 2022 Nordic Human-Computer Interaction Conference. - New York, NY, USA : ACM Digital Library. ; , s. 1-4 Konferensbidrag (refereegranskat)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.
37.	Olsson-Tall, Maivor, et al. (författare) The Impact of Repeated Assessments by Patients and Professionals: A 4-Year Follow-Up of a Population With Schizophrenia 2019 Ingår i: Journal of the American Psychiatric Nurses Association. - : SAGE Publications. - 1078-3903 .- 1532-5725. ; 25:3, s. 189-199 Tidskriftsartikel (refereegranskat)abstract The needs of people with schizophrenia are great, and having extensive knowledge of this patient group is crucial for providing the right support. The aim of this study was to investigate, over 4 years, the importance of repeated assessments by patients with schizophrenia and by professionals. Data were collected from evidence-based assessment scales, interviews, and visual self-assessment scales. The data processing used descriptive statistics, correlation and regression analyses. The results showed that the relationships between several of the patients’ self-rating assessments were stronger at the 4-year follow-up than at baseline. In parallel, the concordance rate between patient assessments and case manager assessments increased. The conclusions drawn are that through repeated assessments the patients’ ability to assess their own situation improved over time and that case managers became better at understanding their patients’ situation. This, in turn, provides a safer basis for assessments and further treatment interventions, which may lead to more patients achieving remission, which can lead to less risk for hospitalization and too early death.
38.	Omerov, Pernilla, et al. (författare) Preparatory Studies to a Population-Based Survey of Suicide-Bereaved Parents in Sweden. 2013 Ingår i: Crisis. - : Hogrefe Publishing Group. - 0227-5910 .- 2151-2396. ; 34:3, s. 200-210 Tidskriftsartikel (refereegranskat)abstract Background: There is a need for evidence-based guidelines on how professionals should act following a suicide. In an effort to provide empiric knowledge, we designed a nationwide population-based study including suicide-bereaved parents. Aim: To describe the process from creating hypotheses through interviews to the development of a population-based questionnaire. Method: We used interviews, qualitative analysis and various means of validation to create a study-specific questionnaire to be used in a nonselected nationwide population of suicide-bereaved parents and a control population of nonbereaved (N = 2:1). The Swedish Register of Causes of Death and the Multigeneration Register were used to identify eligible individuals. All presumptive participants received a letter of invitation followed by a personal contact. Results: We developed a questionnaire covering the participants' perception of participation, their daily living, psychological morbidity, professional actions, and other experiences in immediate connection to the time before and after the suicide. Almost three out of four parents (bereaved = 666, nonbereaved = 377) responded to the questionnaire. Conclusions: By involving parents early in the research process we were able to create a questionnaire that generated a high participation rate in a nationwide population-based study that might help us to answer our hypotheses about bereavement after suicide.
39.	Pauli Bock, Emelie, et al. (författare) Literature Review : Evidence-Based Health Outcomes and Perceptions of the Built Environment in Pediatric Hospital Facilities. 2021 Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 61, s. e42-e50 Tidskriftsartikel (refereegranskat)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.
40.	Persson, Klara Josefina, et al. (författare) Do best practice recommendations align with current aphasia practices in the Swedish care context : a national survey 2022 Ingår i: Aphasiology. - : Routledge. - 0268-7038 .- 1464-5041. ; 36:8, s. 903-920 Tidskriftsartikel (refereegranskat)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.
41.	Pestoff, Rebecka, et al. (författare) Genetic counsellors in Sweden : their role and added value in the clinical setting. 2016 Ingår i: European Journal of Human Genetics. - : Nature Publishing Group. - 1018-4813 .- 1476-5438. ; 24:3, s. 350-355 Tidskriftsartikel (refereegranskat)abstract Genetic testing is becoming more commonplace in general and specialist health care and should always be accompanied by genetic counselling, according to Swedish law. Genetic counsellors are members of the multi-disciplinary team providing genetic counselling. This study examined the role and added value of genetic counsellors in Sweden, using a cross-sectional on-line survey. The findings showed that the genetic counsellors added value in the clinical setting by acting as the 'spider-in-the-web' regarding case management, having a more holistic, ethical and psychological perspective, being able to offer continuous support and build a relationship with the patient, and being more accessible than medical geneticists. The main difference between a genetic counsellor and medical geneticist was that the doctor had the main medical responsibility. Thus genetic counsellors in Sweden contribute substantially to the care of patients in the clinical genetic setting.
42.	Peute, Linda W., et al. (författare) Challenges and Best Practices in Ethical Review of Human and Organizational Factors Studies in Health Technology : a Synthesis of Testimonies 2020 Ingår i: IMIA Yearbook of Medical Informatics. - : Georg Thieme Verlag KG. - 0943-4747 .- 2364-0502. ; 29:1, s. 58-70 Tidskriftsartikel (refereegranskat)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.
43.	Rasmussen, Bodil, et al. (författare) Breastfeeding practices in women with type 1 diabetes: A discussion of the psychosocial factors and policies in Sweden and Australia 2015 Ingår i: Women and Birth. - : Elsevier BV. - 1871-5192. ; 28:1, s. 71-75 Tidskriftsartikel (refereegranskat)abstract Background: Women with type 1 diabetes (T1DM) face many challenges during their pregnancy, birth and in the postnatal period, including breastfeeding initiation and continuation while maintaining stable glycaemic control. In both Sweden and Australia the rates of breastfeeding initiation are high. However, overall there is limited information about the breastfeeding practices of women with T1DM and the factors affecting them. Similarities in demographics, birth rates and health systems create bases for discussion. Aim: The aim of this paper is to discuss psychosocial factors, policies and practices that impact on the breastfeeding practices of women with T1DM. Findings: Swedish research indicates that the overall breastfeeding rate in women with T1DM remains significantly lower than in women without diabetes in the first 2 and 6 months after childbirth with no differences in exclusive breastfeeding. Breastfeeding initiation and continuation among women with T1DM in Sweden has been shown to be influenced by health services delivery, supportive breastfeeding polices and socio-economic factors, particular perceived support from social networks and health professionals. Conclusion: There is limited research on the impact of attitudes towards breastfeeding, emotional and social well-being and diabetes-related stress on the decision of women with T1DM to initiate and continue to breastfeed for at least 6 months. A more comprehensive understanding of the breastfeeding practices and psychosocial factors operating during the first 6 months after birth for women with T1DM will be instrumental in the future design of interventions promoting initiation and continuation of breastfeeding in Sweden, Australia and elsewhere.
44.	Rexhepi, Hanife, 1984-, et al. (författare) Online electronic healthcare records : Comparing the views of cancer patients and others 2020 Ingår i: Health Informatics Journal. - : Sage Publications. - 1460-4582 .- 1741-2811. ; 26:4, s. 2915-2929 Tidskriftsartikel (refereegranskat)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.
45.	Riggare, Sara, et al. (författare) "You have to know why you're doing this" : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease 2019 Ingår i: BMC Medical Informatics and Decision Making. - Stockholm : Springer Science and Business Media LLC. - 1472-6947. ; 19:1 Tidskriftsartikel (refereegranskat)abstract Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.
46.	Rivano Fischer, Marcelo, et al. (författare) Variability in patient characteristics and service provision of interdisciplinary pain rehabilitation : a study using the Swedish national quality registry for pain rehabilitation 2020 Ingår i: Journal of Rehabilitation Medicine. - : Foundation for Rehabilitation Information. - 1650-1977 .- 1651-2081. ; 52:11 Tidskriftsartikel (refereegranskat)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.
47.	Rosengran, Björn, et al. (författare) EPA-en modell för att träna och bedöma dagligt läkarjobb 2019 Ingår i: Läkartidningen. - : Läkartidningen Förlag AB. - 0023-7205 .- 1652-7518. ; 116, s. 1-4 Tidskriftsartikel (refereegranskat)
48.	Rovner, Graciela, 1959, et al. (författare) Chronic pain and sex-differences; women accept and move, while men feel blue. 2017 Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 12:4 Tidskriftsartikel (refereegranskat)abstract The aim of this study is to explore differences between male and female patients entering a rehabilitation program at a pain clinic in order to gain a greater understanding of different approaches to be used in rehabilitation.1371 patients referred to a specialty pain rehabilitation clinic, completed sociodemographic and pain related questionnaires. They rated their pain acceptance (CPAQ-8), their kinesiophobia (TSK), the impact of pain in their life (MPI), anxiety and depression levels (HAD) and quality of life scales: the SF-36, LiSat-11, and the EQ-5D. Because of the large sample size of the study, the significance level was set at the p ≤.01.Analysis by t-test showed that when both sexes experience the same pain severity, women report significantly higher activity level, pain acceptance and social support while men report higher kinesiophobia, mood disturbances and lower activity level.Pain acceptance (CPAQ-8) and kinesiophobia (TSK) showed the clearest differences between men and women. Pain acceptance and kinesiophobia are behaviorally defined and have the potential to be changed.
49.	Saget, Sylvie, et al. (författare) Developing strategies to stop bullying: Design considerations for an artificial training center 2019 Ingår i: Dialog for Good (DiGo) 2019: Workshop on Speech and Language Technology Serving Society, Stockholm, 10 September, 2019. Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract Reporting incidents to an adult is the top recommendation for youth victims facing bullying. At the same time, victims need to develop strategies to use when they are facing their offenders: counter aggression and making a safety plan. This paper presents design considerations for a conversational system being a training center for a victim to learn and try such strategies. We first detail what is bullying and existing preventive measures. We then detail specific features of such a conversational system and we define a set of functionalities and dialog design considerations required to ensure compliance with the preceding features. We close with the presentation of a simple illustrative implementation.
50.	Scandurra, Isabella, 1973-, et al. (författare) Is Access to eHealth Records Important for Patients? : Opinions of Healthcare Personnel 2015 Ingår i: MedInfo 2015. - Amsterdam, Netherlands : IOS Press. - 9781614995647 - 9781614995630 ; , s. 908-908 Konferensbidrag (refereegranskat)abstract Sweden has had significant progress with the the introduction of electronic health records. A pilot county deployed in an eHealth service in 2012, giving access to health records for all of its patients. This eHealth service is, however, a controversial issue. Two surveys were conducted to discover whether healthcare professionals' opinions differ between professionals, and between staff who have had experience with patients using eHealth records and those, to date, who have had none. Experienced nurses found this eHealth service more important for the patients compared to unexperienced nurses outside the pilot county, as well as both semi-experienced physicians.

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