I am a Registered Nurse and (full) professor in caring sciences and leader of the Resilient Healthcare and Patient Activation, ReAction, research group at Linnaeus University. I also hold a position as researcher at Karolinska Institutet. My research aims to improve resilient healthcare systems through development, testing and implementation of person-centered work processes and digital tools that support patients' active participation in healthy behavior and self-care management. This multidisciplinary research targets people living with complex and chronic conditions in transitional care or care at home. Mixed qualitative and quantitative-driven designs are used, ranging from exploration to testing of evidence in randomized controlled studies, and implementation sciences.
Background Chronic diseases are increasing worldwide, and the complexity of disease management is... more Background Chronic diseases are increasing worldwide, and the complexity of disease management is putting new demands on safe healthcare. Telemonitoring technology has the potential to improve self-care management with the support of healthcare professionals for people with chronic diseases living at home. Patient safety threats related to telemonitoring and how they may affect patients’ and healthcare professionals’ sense of security need attention. This study aimed to explore patients’ and healthcare professionals’ experiences of safety and sense of security when using telemonitoring of chronic conditions at home. Methods Semi-structured interviews were conducted with twenty patients and nine healthcare professionals (nurses and physicians), recruited from four primary healthcare centers and one medical department in a region in southern Sweden using telemonitoring service for chronic conditions in home healthcare. Results The main theme was that experiences of safety and a sense ...
ObjectivesAcute care units manage high risk patients at the edge of scientifically established tr... more ObjectivesAcute care units manage high risk patients at the edge of scientifically established treatments and organisational constraints while aiming to balance reliability to standards with the needs of situational adaptation (resilience). First-line managers are central in coordinating clinical care. Any systemic brittleness will be evident only in retrospect through, for example, care quality measures and accident statistics. This challenges us to understand what successful managerial strategies for adaptation are and how they could be improved. The managerial work of balancing reliability and adaptation is only partially understood. This study aims to explore and describe how system resilience is enhanced by naturally occurring coordination performed in situ by a management team under variable circumstances.DesignAn explorative observational study of a tertiary neonatal intensive care unit (NICU) in Sweden. One year of broad preparatory work followed by focused shadowing observa...
Background The Patient Activation Measure (PAM) is a recognized measure of how active patients ar... more Background The Patient Activation Measure (PAM) is a recognized measure of how active patients are in their care, and has been translated into several languages and cultural contexts. Patient activity, self-care, and health literacy have become increasingly important aspects of health care, and thus reliable measures of these are needed. However, a Swedish translation of PAM is currently lacking. The aim of the study was to translate and assess the validity and reliability of the Swedish PAM-13. Methods A self-report questionnaire was handed out to 521 patients at ten medical, geriatric, and surgical wards, and one Virtual Health Room. The Rasch model was employed, using the partial credit model, to assess the functioning of the PAM scale, item fit, targeting, unidimensionality, local independence, differential item functioning (DIF), and person-separation index. Evidence of substantive, content, structural, and external validity was examined. Results Of the 521 patients who were co...
BACKGROUND Prostate cancer has increased in incidence worldwide and is the leading cause of cance... more BACKGROUND Prostate cancer has increased in incidence worldwide and is the leading cause of cancer death in 24 countries. The most common treatment is radical prostatectomy. However, surgery is associated with postoperative complications such as urinary incontinence and sexual dysfunction, causing decreased quality of life. If survivors are encouraged to be more active in self-care management, the symptom burden may decrease and quality of life improve. An eHealth intervention based on motivational behavioral theory has been developed for this purpose. OBJECTIVE to compare the effectiveness of a tailored eHealth-assisted self-management support, ePATH, with standard care of postoperative symptoms (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim is to test the effect on patient activation, motivation, overall well-being, and health literacy over time, in and between groups. METHODS A pragmatic multi-center block-randomized contr...
Being a family member of a patient who is being treated in an acute care setting for cancer often... more Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.
Introduction Since early 2020, the COVID-19 pandemic has challenged societies and revealed the bu... more Introduction Since early 2020, the COVID-19 pandemic has challenged societies and revealed the built-in fragility and dependencies in complex adaptive systems, such as healthcare. The pandemic has placed healthcare providers and systems under unprecedented amounts of strain with potential consequences that have not yet been fully elucidated. This multilevel project aims to explore resilient performance with the purpose of improving the understanding of how healthcare has adapted during the pandemic’s rampage, the processes involved and the consequences on working conditions, ethics and patient safety. Methods An emerging explorative multilevel design based on grounded theory methodology is applied. Open and theoretical sampling is performed. Empirical data are gathered over time from written narratives and qualitative interviews with staff with different positions in healthcare organisations in two Swedish regions. The participants’ first-person stories are complemented with data fr...
Background The number of patients with one or more chronic conditions is increasing globally. One... more Background The number of patients with one or more chronic conditions is increasing globally. One strategy to achieve more sustainable care for these patients is by implementing use of home-based eHealth applications. Such services support patients to take on a more active role as value-creating co-producers of their own care, in collaboration with health care professionals. Health care professionals have a key role in the value creation process, but little is known about value formation within eHealth interactions, especially from their perspective. Therefore, this study aimed to provide a deeper understanding of how an eHealth application can function as a value-creating resource from the perspective of health care professionals. Methods Semi-structured interviews were conducted with thirteen health care professionals (nurses, physicians and first-line managers). Qualitative content analysis was used to analyze the interviews. Results The findings indicate that value formation pro...
Studies in Health Technology and Informatics, 2018
For older people who transition from hospital to home, home care is an increasingly important and... more For older people who transition from hospital to home, home care is an increasingly important and effective way of managing chronic illness with skilled nursing care in the home. Communication between clinicians across care settings is fundamental for continuity of care. Poor communication of patient information is acknowledged to be a root cause of sentinel events. In Scandinavia and the United States, researchers study the communication of patient information from hospital to home care. The health care systems of these two countries differ. Differences are reflected in the characteristics of patients transferred from hospital to home care, as well as the characteristics of health information systems (ICT). These differences help to elucidate key issues related to the transfer of patient information from hospital to home care.
Access to the published version may require subscription. N.B. When citing this work, cite the or... more Access to the published version may require subscription. N.B. When citing this work, cite the original published paper. Permanent link to this version: http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-1269
International Journal of Environmental Research and Public Health
The increasing prevalence of chronic conditions and multimorbidity poses great challenges to heal... more The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients’ engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application—ePATH (electronic Patient Activation in Treatment at Home)—with separate user interfaces for patients and healthcare pr...
Despite a development in Swedish patient safety work in recent years, unambiguous results are mis... more Despite a development in Swedish patient safety work in recent years, unambiguous results are missing. Here we propose some activities that will result in improved patient safety. Patients and employees are a strong driving force, and should be given a more important role. The level of education in patient safety must be raised in all levels in the system. Effective systems for learning, sharing and follow-up need to be reinforced. The understanding on how the health-care system adapts to varying circumstances, resilience, needs development. The knowledge basis of what constitutes and creates safety in psychiatry, paediatric care, primary care, and in care of the elderly must be developed.
Background Chronic diseases are increasing worldwide, and the complexity of disease management is... more Background Chronic diseases are increasing worldwide, and the complexity of disease management is putting new demands on safe healthcare. Telemonitoring technology has the potential to improve self-care management with the support of healthcare professionals for people with chronic diseases living at home. Patient safety threats related to telemonitoring and how they may affect patients’ and healthcare professionals’ sense of security need attention. This study aimed to explore patients’ and healthcare professionals’ experiences of safety and sense of security when using telemonitoring of chronic conditions at home. Methods Semi-structured interviews were conducted with twenty patients and nine healthcare professionals (nurses and physicians), recruited from four primary healthcare centers and one medical department in a region in southern Sweden using telemonitoring service for chronic conditions in home healthcare. Results The main theme was that experiences of safety and a sense ...
ObjectivesAcute care units manage high risk patients at the edge of scientifically established tr... more ObjectivesAcute care units manage high risk patients at the edge of scientifically established treatments and organisational constraints while aiming to balance reliability to standards with the needs of situational adaptation (resilience). First-line managers are central in coordinating clinical care. Any systemic brittleness will be evident only in retrospect through, for example, care quality measures and accident statistics. This challenges us to understand what successful managerial strategies for adaptation are and how they could be improved. The managerial work of balancing reliability and adaptation is only partially understood. This study aims to explore and describe how system resilience is enhanced by naturally occurring coordination performed in situ by a management team under variable circumstances.DesignAn explorative observational study of a tertiary neonatal intensive care unit (NICU) in Sweden. One year of broad preparatory work followed by focused shadowing observa...
Background The Patient Activation Measure (PAM) is a recognized measure of how active patients ar... more Background The Patient Activation Measure (PAM) is a recognized measure of how active patients are in their care, and has been translated into several languages and cultural contexts. Patient activity, self-care, and health literacy have become increasingly important aspects of health care, and thus reliable measures of these are needed. However, a Swedish translation of PAM is currently lacking. The aim of the study was to translate and assess the validity and reliability of the Swedish PAM-13. Methods A self-report questionnaire was handed out to 521 patients at ten medical, geriatric, and surgical wards, and one Virtual Health Room. The Rasch model was employed, using the partial credit model, to assess the functioning of the PAM scale, item fit, targeting, unidimensionality, local independence, differential item functioning (DIF), and person-separation index. Evidence of substantive, content, structural, and external validity was examined. Results Of the 521 patients who were co...
BACKGROUND Prostate cancer has increased in incidence worldwide and is the leading cause of cance... more BACKGROUND Prostate cancer has increased in incidence worldwide and is the leading cause of cancer death in 24 countries. The most common treatment is radical prostatectomy. However, surgery is associated with postoperative complications such as urinary incontinence and sexual dysfunction, causing decreased quality of life. If survivors are encouraged to be more active in self-care management, the symptom burden may decrease and quality of life improve. An eHealth intervention based on motivational behavioral theory has been developed for this purpose. OBJECTIVE to compare the effectiveness of a tailored eHealth-assisted self-management support, ePATH, with standard care of postoperative symptoms (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim is to test the effect on patient activation, motivation, overall well-being, and health literacy over time, in and between groups. METHODS A pragmatic multi-center block-randomized contr...
Being a family member of a patient who is being treated in an acute care setting for cancer often... more Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.
Introduction Since early 2020, the COVID-19 pandemic has challenged societies and revealed the bu... more Introduction Since early 2020, the COVID-19 pandemic has challenged societies and revealed the built-in fragility and dependencies in complex adaptive systems, such as healthcare. The pandemic has placed healthcare providers and systems under unprecedented amounts of strain with potential consequences that have not yet been fully elucidated. This multilevel project aims to explore resilient performance with the purpose of improving the understanding of how healthcare has adapted during the pandemic’s rampage, the processes involved and the consequences on working conditions, ethics and patient safety. Methods An emerging explorative multilevel design based on grounded theory methodology is applied. Open and theoretical sampling is performed. Empirical data are gathered over time from written narratives and qualitative interviews with staff with different positions in healthcare organisations in two Swedish regions. The participants’ first-person stories are complemented with data fr...
Background The number of patients with one or more chronic conditions is increasing globally. One... more Background The number of patients with one or more chronic conditions is increasing globally. One strategy to achieve more sustainable care for these patients is by implementing use of home-based eHealth applications. Such services support patients to take on a more active role as value-creating co-producers of their own care, in collaboration with health care professionals. Health care professionals have a key role in the value creation process, but little is known about value formation within eHealth interactions, especially from their perspective. Therefore, this study aimed to provide a deeper understanding of how an eHealth application can function as a value-creating resource from the perspective of health care professionals. Methods Semi-structured interviews were conducted with thirteen health care professionals (nurses, physicians and first-line managers). Qualitative content analysis was used to analyze the interviews. Results The findings indicate that value formation pro...
Studies in Health Technology and Informatics, 2018
For older people who transition from hospital to home, home care is an increasingly important and... more For older people who transition from hospital to home, home care is an increasingly important and effective way of managing chronic illness with skilled nursing care in the home. Communication between clinicians across care settings is fundamental for continuity of care. Poor communication of patient information is acknowledged to be a root cause of sentinel events. In Scandinavia and the United States, researchers study the communication of patient information from hospital to home care. The health care systems of these two countries differ. Differences are reflected in the characteristics of patients transferred from hospital to home care, as well as the characteristics of health information systems (ICT). These differences help to elucidate key issues related to the transfer of patient information from hospital to home care.
Access to the published version may require subscription. N.B. When citing this work, cite the or... more Access to the published version may require subscription. N.B. When citing this work, cite the original published paper. Permanent link to this version: http://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-1269
International Journal of Environmental Research and Public Health
The increasing prevalence of chronic conditions and multimorbidity poses great challenges to heal... more The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients’ engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application—ePATH (electronic Patient Activation in Treatment at Home)—with separate user interfaces for patients and healthcare pr...
Despite a development in Swedish patient safety work in recent years, unambiguous results are mis... more Despite a development in Swedish patient safety work in recent years, unambiguous results are missing. Here we propose some activities that will result in improved patient safety. Patients and employees are a strong driving force, and should be given a more important role. The level of education in patient safety must be raised in all levels in the system. Effective systems for learning, sharing and follow-up need to be reinforced. The understanding on how the health-care system adapts to varying circumstances, resilience, needs development. The knowledge basis of what constitutes and creates safety in psychiatry, paediatric care, primary care, and in care of the elderly must be developed.
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