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  • 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)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.
  • 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.
  • 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. - 1472-6947 .- 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.
  • 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.
  • Berlin, Johan, 1975- (författare)
  • Teamarbete : ett livsviktigt samspel
  • 2013. - 1
  • Ingår i: Sjuksköterskans kärnkompetenser. - Stockholm : Liber. - 9789147105687 ; , s. 159-177
  • Bokkapitel (refereegranskat)
  • 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. - 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.
  • 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. 
  • 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.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • Mobile Access and Adoption of the Swedish National Patient Portal.
  • 2020
  • Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 275, s. 82-86
  • Tidskriftsartikel (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.
  • Hägglund, Maria, Lektor, 1975-, et al. (författare)
  • Patients’ access to health records
  • 2019
  • Ingår i: BMJ. British Medical Journal. - : BMJ Publishing Group Ltd. - 1756-1833. ; 367
  • Tidskriftsartikel (övrigt vetenskapligt)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.
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