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  • 1.
    Flink, Maria
    et al.
    Karolinska Institutet;Karolinska University Hospital.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet.
    Planning for the Discharge, not for Patient Self-Management at Home - An Observational and Interview Study of Hospital Discharge2017In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 17, article id UNSP 1Article in journal (Refereed)
    Abstract [en]

    Introduction and objective: Despite recent interest in care transitions, little is known about how patients are prepared for the self-management tasks following the hospitalization. The objective of the study was to explore how discharge information is prepared and provided to patients in the transition from hospital to home. Method: The discharge process at three hospitals in Sweden was observed over 12 days spread over ten weeks. In total, 30 discharge encounters were observed followed by interviews with patients and professionals. Data were analysed using qualitative content analysis. Results: Much time, effort and resources were used to prepare the discharge; home-going teams and registered nurses planned the practical and social aspects of the discharge and the physicians compiled a plain-language discharge letter. Less focus was given on the actual discharge information to the patients. The discharge encounters lasted for a median of 4: 46 minutes and the information had a retrospective focus with information on the hospitalization period, though omitting self-management tasks and lifestyle advice. Conclusion: The discharge letter constitutes the basis for all patient information at discharge. The focus of the discharge encounter needs to be extended beyond mere information to include patient understanding, motivation and skills for self-management at home.

  • 2.
    Frykholm, Oscar
    et al.
    Karolinska Institutet.
    Flink, Maria
    Karolinska Institutet.
    Lindblad, Marlene
    KTH Royal Institute of Technology.
    Ekstedt, Mirjam
    Karolinska Institutet;KTH Royal Institute of Technology.
    User-centered design of integrated eHealth to improve patients' activation in transitional care2016In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 16, no 6, p. 1-8, article id A338Article in journal (Refereed)
    Abstract [en]

    Introduction: The burden of chronic diseases is expected to escalate worldwide. Despite extensive use of emergency rooms and specialized care of persons with multiple or chronic diseases, the majority of the time care is managed in the patient’s home. For patients, living with chronic illnesses can be highly demanding, requiring them to manage their symptoms, disabilities and complex medical regimens at home. Effectively functioning in the role of self-manager requires a high level of knowledge, skill, and confidence. In order to handle these challenges, new models for care are required.

    eHealth solutions, successfully implemented in everyday clinical practice have shown significant effects on symptom management and self-efficacy, improving quality of care. Despite the wide proliferation and everyday use of consumer technology as well as eHealth solutions, the contribution of eHealth solutions in enhancing patients’ activation in self-management of their care is an underdeveloped field. Therefore, we undertake a long-term project of developing an eHealth solution where patients and care-givers are active stakeholders, and in parallel, paving the way for clinical ownership of the eHealth solution, in order to evaluate it in a randomized controlled study. The aim of this abstract is to describe the user-centered design in the development of an eHealth service.

    Theory and Method: We report process data from an ongoing study; aiming to improve transitional care by focusing on patient activation and participation during the critical post-hospitalization phase. We draw upon principals of the evidence-based Care Transition Intervention, which will be integrated into an eHealth solution, as a ‘digital coach’ to support patients’ self- management. We have identified four pillars that will form the foundation of the eHealth solution: care plan, medication self-management, symptom management, and contact information to relevant care-givers.

    In the first phase of the project, we have utilized a user-centered design process by engaging patients and care-givers in interviews, workshops and design activities. Results from these activities are documented in user-centered material such as patient journeys, effect maps, and prototypes of the eHealth solution. This material has been directly fed into the development of the technical solution, making us confident that the proposed solution will solve concrete user needs. At the same time, we make long-term collaborations with the care-givers and departments, from where the eHealth solution will be distributed to patients in the study.

    Progress report: A number of observational and design activities have been conducted with both patients and care-givers, at two different hospitals. User context has been documented in patient journeys, which describe a typical patient’s journey from first symptom through medical evaluation and treatment, up to living with the disease or complications of the treatment. The patient journey describes, in different stages, how the patient´s feels, their contact with health care, what information they receives and requires, and what examinations and treatments they undergoes. Visualizing health care from the patient’s perspective in this manner helps identifying gaps in e.g. information needs and to position the eHealth solution in situations where it can solve concrete needs. Furthermore, user needs have been captured in effect maps, which connect hands-on needs or functionality with high-level goals (e.g. ultimately enhanced patient activation and reduced re-hospitalization). As of now, in the second phase of the project, development of technical solution has commenced, and we are planning for pilot testing in the next couple of months.

    Discussion and conclusions: eHealth solutions play an important part in improving activation and awareness. However, it is not simply solved by the sheer introduction of eHealth solutions we have learned that it requires:

    - Successful implementation in the health care processes, as personnel should feel an ownership of the eHealth solution in order to perceive it as an effective tool in their communication with patients and collaboration with other care givers.

    - Presentation of relevant feedback to patients, in order for them to learn about their own disease and symptoms, and to be actively engaged in self-management at home Using motivational gamification in eHealth solutions will help to capture patients’ interest to take active role in their own care, and to motivate patients to learn and maintain self-management knowledge and skills.

    - Fitting it into the existing eco system of technical solutions for health care as well as patient- and lifestyle-centered applications.

  • 3.
    Petrakou, Alexandra
    University of Kalmar, School of Communication and Design.
    Integrated care in the daily work: Coordination beyond organisational boundaries2009In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 9, no july 2009, p. 1-8Article in journal (Refereed)
  • 4.
    Struckmann, Verena
    et al.
    Berlin Univ Technol, Germany.
    Barbabella, Francesco
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Natl Inst Hlth & Sci Ageing INRCA, Italy.
    Dimova, Antoniya
    Varna Med Univ, Bulgaria.
    van Ginneken, Ewout
    Berlin Univ Technol, Germany.
    Integrated Diabetes Care Delivered by Patients - A Case Study from Bulgaria2017In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 17, article id UNSP 6Article in journal (Refereed)
    Abstract [en]

    Introduction: Increasing numbers of persons are living with multiple chronic diseases and unmet medical needs in Bulgaria. The Bulgarian 'Diabetic care' non-profit (DCNPO) programme aims to provide comprehensive integrated care focusing on people with diabetes and their co-morbidities. Methods: The DCNPO programme was selected as one of eight 'high potential' programmes in the Innovating Care for People with Multiple Chronic Conditions (ICARE4EU) project, covering 31 European countries. Data was first gathered with a questionnaire after which semi-structured interviews with project staff and participants were conducted during a site visit. Results: The programme trains diabetic patients to act as carers, case managers, self-management trainers and health system navigators for diabetic patients and their family. The programme improved care coordination and patient-centered care by offering free care delivered by a multidisciplinary team. It facilitates the collaboration between patients, volunteers, health providers and the community. Internal evaluations demonstrate reduced hospital admissions and avoidable amputations, with consequent cost savings for the health care system. Conclusion: Integrated care provided by volunteering patients can empower people suffering from diabetes and their co-morbidities and address health and social inequalities in resource-poor settings. It can also contribute to an increased trust and improved satisfaction among vulnerable patients with complex care needs.

  • 5.
    Tolson, Debbie
    et al.
    University of the West of Scotland, UK.
    Fleming, Anne
    University of the West of Scotland, UK.
    Hanson, Elizabeth
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Abreu, Wilson
    Porto School of Nursing, Portugal.
    Lillo Crespo, Manuel
    University of Alicante, Spain.
    Macrae, Rhoda
    University of the West of Scotland, UK.
    Jackson, Graham
    University of the West of Scotland, UK.
    Hvalič Touzery, Simona
    Faculty of Healthcare Jesenice, Slovenia.
    Routasalo, Pirkko
    Turku University of Applied Sciences, Finland.
    Holmerová, Iva
    Charles University, Czech Republic.
    Achieving Prudent Dementia Care (Palliare): an International Policy and Practice Imperative2016In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 16, no 4, p. 1-11, article id 18Article in journal (Refereed)
    Abstract [en]

    This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.

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