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1.
  • Scott Duncan, Therese, et al. (författare)
  • From Information Seekers to Innovators : Qualitative Analysis Describing Experiences of the Second Generation of E-Patients
  • 2019
  • Ingår i: Journal of Medical Internet Research. - Stockholm : JMIR Publications Inc.. - 1438-8871. ; 21:8
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative.OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care.METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset.RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them.CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.
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2.
  • Aamodt, Ina Thon, et al. (författare)
  • Health Care Professionals Perceptions of Home Telemonitoring in Heart Failure Care: Cross-Sectional Survey
  • 2019
  • Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 21:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Noninvasive telemonitoring (TM) can be used in heart failure (HF) patients to perform early detection of decompensation at home, prevent unnecessary health care utilization, and decrease health care costs. However, the evidence is not sufficient to be part of HF guidelines for follow-up care, and we have no knowledge of how TM is used in the Nordic Baltic region. Objective: The aim of this study was to describe health care professionals (HCPs) perception of and presumed experience with noninvasive TM in daily HF patient care, perspectives of the relevance of and reasons for applying noninvasive TM, and barriers to the use of noninvasive TM. Methods: A cross-sectional survey was performed between September and December 2016 in Norway and Lithuania with physicians and nurses treating HF patients at either a hospital ward or an outpatient clinic. A total of 784 questionnaires were sent nationwide by postal mail to 107 hospitals. The questionnaire consisted of 43 items with close- and open-ended questions. In Norway, the response rate was 68.7% (226/329), with 57 of 60 hospitals participating, whereas the response rate was 68.1% (310/455) in Lithuania, with 41 of 47 hospitals participating. Responses to the closed questions were analyzed using descriptive statistics, and the open-ended questions were analyzed using summative content analysis. Results: This study showed that noninvasive TM is not part of the current daily clinical practice in Norway or Lithuania. A minority of HCPs responded to be familiar with noninvasive TM in HF care in Norway (48/226, 21.2%) and Lithuania (64/310, 20.6%). Approximately half of the HCPs in both countries perceived noninvasive TM to be relevant in follow-up of HF patients in Norway (131/226, 58.0%) and Lithuania (172/310, 55.5%). For physicians in both countries and nurses in Norway, the 3 most mentioned reasons for introducing noninvasive TM were to improve self-care, to reduce hospitalizations, and to provide high-quality care, whereas the Lithuanian nurses described ability to treat more patients and to reduce their workload as reasons for introducing noninvasive TM. The main barriers to implement noninvasive TM were lack of funding from health care authorities or the Territorial Patient Fund. Moreover, HCPs perceive that HF patients themselves could represent barriers because of their physical or mental condition in addition to a lack of internet access. Conclusions: HCPs in Norway and Lithuania are currently nonusers of TM in daily HF care. However, they perceive a future with TM to improve the quality of care for HF patients. Financial barriers and HF patients condition may have an impact on the use of TM, whereas sufficient funding from health care authorities and improved knowledge may encourage the more widespread use of TM in the Nordic Baltic region and beyond.
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3.
  • Aamodt, Ina Thon, et al. (författare)
  • Self-Care Monitoring of Heart Failure Symptoms and Lung Impedance at Home Following Hospital Discharge: Longitudinal Study
  • 2020
  • Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 22:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Self-care is key to the daily management of chronic heart failure (HF). After discharge from hospital, patients may struggle to recognize and respond to worsening HF symptoms. Failure to monitor and respond to HF symptoms may lead to unnecessary hospitalizations. Objective: This study aimed to (1) determine the feasibility of lung impedance measurements and a symptom diary to monitor HF symptoms daily at home for 30 days following hospital discharge and (2) determine daily changes in HF symptoms of pulmonary edema, lung impedance measurements, and if self-care behavior improves over time when patients use these self-care monitoring tools. Methods: This study used a prospective longitudinal design including patients from cardiology wards in 2 university hospitals-one in Norway and one in Lithuania. Data on HF symptoms and pulmonary edema were collected from 10 participants (mean age 64.5 years; 90% (9/10) male) with severe HF (New York Heart Association classes III and IV) who were discharged home after being hospitalized for an HF condition. HF symptoms were self-reported using the Memorial Symptom Assessment Scale for Heart Failure. Pulmonary edema was measured by participants using a noninvasive lung impedance monitor, the Cardio Set Edema Guard Monitor. Informal caregivers aided the participants with the noninvasive measurements. Results: The prevalence and burden of shortness of breath varied from participants experiencing them daily to never, whereas lung impedance measurements varied for individual participants and the group participants, as a whole. Self-care behavior score improved significantly (P=.007) from a median of 56 (IQR range 22-75) at discharge to a median of 81 (IQR range 72-98) 30 days later. Conclusions: Noninvasive measurement of lung impedance daily and the use of a symptom diary were feasible at home for 30 days in HF patients. Self-care behavior significantly improved after 30 days of using a symptom diary and measuring lung impedance at home. Further research is needed to determine if daily self-care monitoring of HF signs and symptoms, combined with daily lung impedance measurements, may reduce hospital readmissions.
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4.
  • Agnello, Danielle Marie, et al. (författare)
  • Establishing a Health CASCADE-Curated Open-Access Database to Consolidate Knowledge About Co-Creation : Novel Artificial Intelligence-Assisted Methodology Based on Systematic Reviews
  • 2023
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 25
  • Forskningsöversikt (refereegranskat)abstract
    • BACKGROUND: Co-creation is an approach that aims to democratize research and bridge the gap between research and practice, but the potential fragmentation of knowledge about co-creation has hindered progress. A comprehensive database of published literature from multidisciplinary sources can address this fragmentation through the integration of diverse perspectives, identification and dissemination of best practices, and increase clarity about co-creation. However, two considerable challenges exist. First, there is uncertainty about co-creation terminology, making it difficult to identify relevant literature. Second, the exponential growth of scientific publications has led to an overwhelming amount of literature that surpasses the human capacity for a comprehensive review. These challenges hinder progress in co-creation research and underscore the need for a novel methodology to consolidate and investigate the literature.OBJECTIVE: This study aimed to synthesize knowledge about co-creation across various fields through the development and application of an artificial intelligence (AI)-assisted selection process. The ultimate goal of this database was to provide stakeholders interested in co-creation with relevant literature.METHODS: We created a novel methodology for establishing a curated database. To accommodate the variation in terminology, we used a broad definition of co-creation that encompassed the essence of existing definitions. To filter out irrelevant information, an AI-assisted selection process was used. In addition, we conducted bibliometric analyses and quality control procedures to assess content and accuracy. Overall, this approach allowed us to develop a robust and reliable database that serves as a valuable resource for stakeholders interested in co-creation.RESULTS: The final version of the database included 13,501 papers, which are indexed in Zenodo and accessible in an open-access downloadable format. The quality assessment revealed that 20.3% (140/688) of the database likely contained irrelevant material, whereas the methodology captured 91% (58/64) of the relevant literature. Participatory and variations of the term co-creation were the most frequent terms in the title and abstracts of included literature. The predominant source journals included health sciences, sustainability, environmental sciences, medical research, and health services research.CONCLUSIONS: This study produced a high-quality, open-access database about co-creation. The study demonstrates that it is possible to perform a systematic review selection process on a fragmented concept using human-AI collaboration. Our unified concept of co-creation includes the co-approaches (co-creation, co-design, and co-production), forms of participatory research, and user involvement. Our analysis of authorship, citations, and source landscape highlights the potential lack of collaboration among co-creation researchers and underscores the need for future investigation into the different research methodologies. The database provides a resource for relevant literature and can support rapid literature reviews about co-creation. It also offers clarity about the current co-creation landscape and helps to address barriers that researchers may face when seeking evidence about co-creation.
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5.
  • Alaqra, Ala Sarah, et al. (författare)
  • Enhancing Privacy Controls for Patients via a Selective Authentic Electronic Health Record Exchange Service : Qualitative Study of Perspectives by Medical Professionals and Patients
  • 2018
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 20:12
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patients' privacy is regarded as essential for the patient-doctor relationship. One example of a privacy-enhancing technology for user-controlled data minimization on content level is a redactable signature. It enables users to redact personal information from signed documents while preserving the validity of the signature, and thus the authenticity of the document. In this study, we present end users' evaluations of a Cloud-based selective authentic electronic health record (EHR) exchange service (SAE-service) in an electronic health use case. In the use case scenario, patients were given control to redact specified information fields in their EHR, which were signed by their doctors with a redactable signature and transferred to them into a Cloud platform. They can then selectively disclose the remaining information in the EHR, which still bears the valid digital signature, to third parties of their choice. Objective: This study aimed to explore the perceptions, attitudes, and mental models concerning the SAE-service of 2 user roles: signers (medical professionals) and redactors (patients with different technical knowledge) in Germany and Sweden. Another objective was to elicit usability requirements for this service based on the analysis of our investigation. Methods: We chose empirical qualitative methods to address our research objective. Designs of mock-ups for the service were used as part of our user-centered design approach in our studies with test participants from Germany and Sweden. A total of 13 individual walk-throughs or interviews were conducted with medical staff to investigate the EHR signers' perspectives. Moreover, 5 group walk-throughs in focus groups sessions with (N=32) prospective patients with different technical knowledge to investigate redactor's perspective of EHR data redaction control were used. Results: We found that our study participants had correct mental models with regard to the redaction process. Users with some technical models lacked trust in the validity of the doctor's signature on the redacted documents. Main results to be considered are the requirements concerning the accountability of the patients' redactions and the design of redaction templates for guidance and control. Conclusions: For the SAE-service to be means for enhancing patient control and privacy, the diverse usability and trust factors of different user groups should be considered.
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6.
  • Alfonsson, Sven, et al. (författare)
  • Interformat Reliability of Digital Psychiatric Self-Report Questionnaires : A Systematic Review
  • 2014
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 16:12, s. 86-97
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: Research on Internet-based interventions typically use digital versions of pen and paper self-report symptom scales. However, adaptation into the digital format could affect the psychometric properties of established self-report scales. Several studies have investigated differences between digital and pen and paper versions of instruments, but no systematic review of the results has yet been done.OBJECTIVE: This review aims to assess the interformat reliability of self-report symptom scales used in digital or online psychotherapy research.METHODS: Three databases (MEDLINE, Embase, and PsycINFO) were systematically reviewed for studies investigating the reliability between digital and pen and paper versions of psychiatric symptom scales.RESULTS: From a total of 1504 publications, 33 were included in the review, and interformat reliability of 40 different symptom scales was assessed. Significant differences in mean total scores between formats were found in 10 of 62 analyses. These differences were found in just a few studies, which indicates that the results were due to study effects and sample effects rather than unreliable instruments. The interformat reliability ranged from r=.35 to r=.99; however, the majority of instruments showed a strong correlation between format scores. The quality of the included studies varied, and several studies had insufficient power to detect small differences between formats.CONCLUSIONS: When digital versions of self-report symptom scales are compared to pen and paper versions, most scales show high interformat reliability. This supports the reliability of results obtained in psychotherapy research on the Internet and the comparability of the results to traditional psychotherapy research. There are, however, some instruments that consistently show low interformat reliability, suggesting that these conclusions cannot be generalized to all questionnaires. Most studies had at least some methodological issues with insufficient statistical power being the most common issue. Future studies should preferably provide information about the transformation of the instrument into digital format and the procedure for data collection in more detail.
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7.
  • Alfonsson, Sven, et al. (författare)
  • Motivation and Treatment Credibility Predicts Dropout, Treatment Adherence, and Clinical Outcomes in an Internet-Based Cognitive Behavioral Relaxation Program : A Randomized Controlled Trial.
  • 2016
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 18:3
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: In previous research, variables such as age, education, treatment credibility, and therapeutic alliance have shown to affect patients' treatment adherence and outcome in Internet-based psychotherapy. A more detailed understanding of how such variables are associated with different measures of adherence and clinical outcomes may help in designing more effective online therapy.Objective: The aims of this study were to investigate demographical, psychological, and treatment-specific variables that could predict dropout, treatment adherence, and treatment outcomes in a study of online relaxation for mild to moderate stress symptoms.Methods: Participant dropout and attrition as well as data from self-report instruments completed before, during, and after the online relaxation program were analyzed. Multiple linear and logistical regression analyses were conducted to predict early dropout, overall attrition, online treatment progress, number of registered relaxation exercises, posttreatment symptom levels, and reliable improvement.Results: Dropout was significantly predicted by treatment credibility, whereas overall attrition was associated with reporting a focus on immediate consequences and experiencing a low level of intrinsic motivation for the treatment. Treatment progress was predicted by education level and treatment credibility, whereas number of registered relaxation exercises was associated with experiencing intrinsic motivation for the treatment. Posttreatment stress symptoms were positively predicted by feeling external pressure to participate in the treatment and negatively predicted by treatment credibility. Reporting reliable symptom improvement after treatment was predicted by treatment credibility and therapeutic bond.Conclusions: This study confirmed that treatment credibility and a good working alliance are factors associated with successful Internet-based psychotherapy. Further, the study showed that measuring adherence in different ways provides somewhat different results, which underscore the importance of carefully defining treatment adherence in psychotherapy research. Lastly, the results suggest that finding the treatment interesting and engaging may help patients carry through with the intervention and complete prescribed assignments, a result that may help guide the design of future interventions.
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8.
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9.
  • Allemann, Hanna, et al. (författare)
  • Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure : Qualitative Study
  • 2019
  • Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 21:7
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them.Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF.Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis.Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future.Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.
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10.
  • Anderberg, Peter, et al. (författare)
  • A Novel Instrument for Measuring Older People's Attitudes Toward Technology (TechPH) : Development and Validation
  • 2019
  • Ingår i: Journal of Medical Internet Research. - : JMIR PUBLICATIONS, INC. - 1438-8871. ; 21:5
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: The use of health technology by older people is coming increasingly in focus with the demographic changes. Health information technology is generally perceived as an important factor in enabling increased quality of life and reducing the cost of care for this group. Age-appropriate design and facilitation of technology adoption are important to ensure functionality and removal of various barriers to usage. Development of assessment tools and instruments for evaluating older persons' technology adoption and usage as well as measuring the effects of the interventions are of high priority. Both usability and acceptance of a specific technology or service are important factors in evaluating the impact of a health information technology intervention. Psychometric measures are seldom included in evaluations of health technology. However, basic attitudes and sentiments toward technology (eg, technophilia) could be argued to influence both the level of satisfaction with the technology itself as well as the perception of the health intervention outcome. Objective: The purpose of this study is to develop a reduced and refined instrument for measuring older people's attitudes and enthusiasm for technology based on relevant existing instruments for measuring technophilia A requirement of the new instrument is that it should be short and simple to make it usable for evaluation of health technology for older people. Methods: Initial items for the TechPH questionnaire were drawn from a content analysis of relevant existing technophilia measure instruments. An exploratory factor analysis was conducted in a random selection of persons aged 65 years or older (N=374) on eight initial items. The scale was reduced to six items, and the internal consistency and reliability of the scale were examined. Further validation was made by a confirmatory factor analysis (CFA). Results: The exploratory factor analysis resulted in two factors. These factors were analyzed and labeled techEnthusiasm and techAnxiety. They demonstrated relatively good internal consistency (Cronbach alpha=.72 and .68, respectively). The factors were confirmed in the CFA and showed good model fit (chi(2)(8)=21.2, chi(2)/df=2.65, comparative fit index=0.97, adjusted goodness-of-fit index=0.95, root mean square error of approximation=0.067, standardized root mean square residual=0.036). Conclusions: The construed TechPH score showed expected relations to external real-world criteria, and the two factors showed interesting internal relations. Different technophilia personality traits distinguish clusters with different behaviors of adaptation as well as usage of new technology. Whether there is an independent association with the TechPH score against outcomes in health technology projects needs to be shown in further studies. The instrument must also be validated in different contexts, such as other countries.
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