Preventing falls in multiple sclerosis: a qualitative study on user requirements for a self-management programme.

PURPOSE: To explore perspectives of ambulatory and non-ambulatory people with MS (PwMS) and health care professionals (HCPs) on falls and falls management to gain a deeper understanding of how a self-management programme can be designed to fit the needs of end users. MATERIALS AND METHODS: Twelve PwMS and seven HCPs participated in three four-hour workshops based on Design Thinking. Collected data were field notes and digital post-it notes gathered at the workshops. Data were analyzed using qualitative content analysis with an inductive approach. RESULTS: Two main categories, "Managing the complexity of fall-risk behaviour" and "Embracing diversity to establish group engagement", comprising a total of seven categories were constructed from the analysis. The first main category reflects the challenges PwMS face in managing fall risk in their daily lives, and the support needed to address these challenges. The second main category highlights how engaging in peer learning activities can fulfil individual needs and improve learning outcomes for PwMS. CONCLUSION: A self-management fall prevention programme that is relevant to PwMS regardless of ambulation level should include the development of self-tailored behavioural strategies to prevent falls along with interactive learning activities with other PwMS.

A self-management fall prevention programme should be customized to individual fall prevention needs and circumstances in daily life.A self-management fall prevention programme conducted online can enable accessibility for ambulatory and non-ambulatory people with multiple sclerosis (PwMS).Peer learning in groups with other PwMS can facilitate the development of self-tailored fall prevention strategies and provide positive reinforcement to support behavioral change.

A person-centred care transition support for people with stroke/TIA: A study protocol for effect and process evaluation using a non-randomised controlled design.

INTRODUCTION: Care transitions following a stroke call for integrated care approaches to reduce death and disability. The proposed research described in this study protocol aims to evaluate the effectiveness of a person-centred multicomponent care transition support and the process in terms of contextual moderators, implementation aspects and mechanisms of impact. METHODS: A non-randomized controlled trial design will be used. The intervention includes person-centred dialogue intended to permeate all patient-provider communication, various pedagogical modes of information, a person-centred care and rehabilitation plan, and a bridging e-meeting to prepare patients for homecoming. Patients with stroke or TIA who are to be discharged from the participating hospitals to home and referred to a neurorehabilitation team for continued rehabilitation will be included. Follow-ups will be conducted at one week, 3 months and 12 months. Data will be collected on the primary outcome of perceived quality of the care transition, and on the secondary outcomes of health literacy, medication adherence, and perceived person-centeredness. Data for process evaluation will be collected through semi-structured interviews, focus groups, participatory observations, and the Normalisation Measure Development Questionnaire. DISCUSSION: The study will provide insights on implementation, mechanisms of impact, contextual moderators, and effectiveness of a care transition support, targeting a poorly functioning part of the care trajectory for people with stroke and TIA. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05646589.

Association between general self-efficacy and health literacy among stroke survivors 1-year post-discharge: a cross-sectional study.

Stroke may affect physical functioning, cognition, and mental and social aspects of one's life. Health literacy and self-efficacy are associated with positive health outcomes and are important factors for managing the diverse consequences of a stroke. However, there is very little literature on the association between health literacy and self-efficacy. This study aimed to investigate the association between health literacy and self-efficacy among stroke survivors 1 year after discharge from hospital. Participants in this cross-sectional study were patients diagnosed with a stroke, mainly a mild stroke, who were referred to rehabilitation in primary care after discharge from hospital in Sweden. Data was collected using questionnaires, performance-based tests, and medical records. Ordinal logistic regression was used to analyze the association between general self-efficacy and health literacy in adjusted models. The analysis revealed that higher levels of general self-efficacy and higher levels of performing activities of daily living were associated with higher levels of health literacy. Stroke survivors with higher general self-efficacy also report higher health literacy 1-year post-discharge from hospital. Future studies should focus on the pathways by which health literacy and general self-efficacy work among stroke survivors and in populations with low health literacy, severe stroke or significant cognitive impairments.

Social Services Post-discharge and Their Association With Readmission in a 2016 Swedish Geriatric Cohort.

OBJECTIVES: To describe the social services received by a 2016 Swedish cohort after discharge from inpatient geriatric care and to analyze the association between level of social services post-discharge and 30-day readmission. DESIGN: Observational, closed-cohort study. SETTING AND PARTICIPANTS: All patients admitted to 1 of 3 regionally operated inpatient geriatric care settings in Region Stockholm, Sweden, in 2016 (n = 7453). METHODS: Individual-level data from medical records and population registries were linked using unique personal identification numbers. Descriptive statistics were reported for 4 levels of municipal social services post-discharge: long-term care, 1 to 50 home help hours per month, >50 home help hours per month, and no home help. Multinomial logistic regression was performed to analyze the association between level of social services post-discharge and 3 outcomes within 30 days: readmission, death without readmission, or neither readmission nor death. RESULTS: Results show that almost 11% of patients were discharged to long-term care and 54% received municipal home help services. Individuals with no municipal home help or with 1 to 50 hours per month were more likely to be readmitted within 30 days compared with those in long-term care. Living with more than 50 hours of help was not associated with an increased likelihood of 30-day readmission. CONCLUSIONS AND IMPLICATIONS: Patients who received inpatient geriatric care are significant users of municipal social services post-discharge. Living in long-term care or with extensive home help appears to be a protective factor in preventing readmission compared with more limited or no home help services. Care transitions for this frail patient group require careful social care planning. Supporting individuals discharged with fewer social service hours may help reduce readmissions.

Health literacy is associated with less depression symptoms, higher perceived recovery, higher perceived participation, and walking ability one year after stroke - a cross-sectional study.

INTRODUCTION: Life after stroke may entail several lifestyle changes and new routines. Hence, it is imperative for people with stroke to understand and make use of health information, i.e. to have sufficient health literacy. This study aimed to explore health literacy and its associations with outcomes at 12-months post-discharge regarding depression symptoms, walking ability, perceived stroke recovery, and perceived participation in people with stroke. METHODS: This was a cross-sectional study of a Swedish cohort. Data were collected at 12 months post-discharge using European Health Literacy Survey Questionnaire, the Hospital Anxiety and Depression Scale, the 10-m walk test, and the Stroke Impact Scale 3.0. Each outcome was then dichotomized into favorable versus unfavorable outcome. Logistic regression was performed to assess the association between health literacy and favorable outcomes. RESULTS: The participants, n = 108, were on average 72 years old, 60% had mild disability, 48% had a university/college degree, and 64% were men. At 12 months post-discharge, 9% of the participants had inadequate health literacy, 29% problematic health literacy, and 62% sufficient health literacy. Higher levels of health literacy were significantly associated with favorable outcomes relating to depression symptoms, walking ability, perceived stroke recovery, and perceived participation in models adjusted for age, sex, and education level. CONCLUSION: The association between health literacy and mental, physical, and social functioning 12-months post-discharge suggests that health literacy is an important factor to consider in post-stroke rehabilitation. Longitudinal studies of health literacy in people with stroke are warranted to explore the underlying reasons for these associations.

The Use of Teach Back at Hospital Discharge to Support Self-Management of Prescribed Medication for Secondary Prevention after Stroke-Findings from A Feasibility Study.

The study aimed to investigate whether a structured discharge letter and the use of the person-centred communication method Teach Back for sharing information at hospital discharge could support perceived understanding and knowledge of and adherence to prescribed medication for secondary prevention after stroke. Data from a feasibility study of a codesigned care transition support for people with stroke was used. Patients who at discharge received both a structured discharge letter and participated in the person-centred communication method Teach Back (n = 17) were compared with patients receiving standard discharge procedures (n = 21). Questionnaires were used to compare the groups regarding perceived understanding of information about medical treatment, knowledge of information about medical treatment and medication adherence at 1 week and 3 months. There was a statistically significant difference in perceived understanding of information about medical treatment (p > 0.01) between the groups in favour of those who participated in Teach Back at the discharge encounter. No differences between groups were found regarding understanding health information about medical treatment and medication adherence. The results indicate that the use of Teach Back at the discharge encounter positively impacts perceived understanding of information about medical treatment in people with stroke. However, considering the nonrandomised study design and the small sample size, a large-scale trial is needed.

Self-management of falls in people with multiple sclerosis: A scoping review.

OBJECTIVE: Falls are common in people with multiple sclerosis. There is rising interest in how the multifactorial and chronic nature of fall risk among people with multiple sclerosis can be addressed through self-management. Thus, the aims were to investigate the extent and the scope of publications on self-management of falls in people with multiple sclerosis, and to identify how the concept of self-management was defined and used. DATA SOURCES: A systematic literature search in Medline, Cochrane, Web of Science and PsycInfo was conducted to identify publications until July 2022. REVIEW METHODS: Published methodological guidance was followed. Articles targeting: (1) people with multiple sclerosis, (2) falls, and (3) self-management were selected. Of 1656 records, 203 publications were assessed for eligibility, of which 173 did not meet the inclusion criteria, and 16 publications did not contain empirical data. The type of publication, study focus, and study design was extracted. If applicable, key findings, self-management tasks and skills, and the definition of self-management were extracted. RESULTS: Fourteen original articles met all inclusion criteria. Ten articles represented six different fall prevention interventions. Three publications were randomized controlled trials. Self-management content was variable and not comprehensive in nature. None of the 14 publications included a self-management definition. CONCLUSION: The limited number of original articles and the even fewer intervention studies show that the research on self-management of falls in people with multiple sclerosis is in its infancy. To progress in the research area of self-management of falls, a more robust, consensus-based description of self-management frameworks and activities is needed.

Online self-management fall prevention intervention for people with multiple sclerosis: a feasibility study protocol of a parallel group randomised trial.

INTRODUCTION: Falls among people with multiple sclerosis (PwMS) are common and associated with injuries, fear of falling and low health-related quality of life. Considerations of behavioural, environmental, psychological and physical influences (including ambulation status) are needed to meet fall prevention needs for PwMS. Thus, using a codesign process involving key stakeholders a novel online self-management fall prevention intervention was created specifically for ambulatory and non-ambulatory PwMS. The feasibility, acceptability, fidelity and outcome of this complex intervention will be explored. Findings will inform a future full-scale randomised controlled trial. METHODS AND ANALYSIS: A mixed-method design will be used. Forty-eight PwMS, stratified for ambulation level, will be randomised to control (n=24) or intervention (n=24). Both groups will receive a brochure about fall risk factors and fall prevention. The intervention is group-based (eight PwMS in each group); will be delivered online; and involve six, 2-hour weekly sessions and a booster session 8 weeks after the sixth session. Each intervention group will be led by a trained facilitator. Data collection will be performed at baseline, and after seven and 18 weeks. Outcome measures will capture data on fall prevention behaviours, fear of falling, falls self-efficacy, social and everyday activities, perceived impact of MS and number of falls. Feasibility of recruitment process, data collection procedures, outcome measures, and delivery, and intervention acceptability, fidelity and outcomes will be evaluated. Both quantitative and qualitative methods will be used. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Swedish Ethical Review Authority (registration number 2021-04817). Results will be disseminated in peer-review journals, at conferences, research meetings, in social media and through the patient organisation Neuro Sweden. TRIAL REGISTRATION NUMBER: NCT04317716.

Referral-based transition to subsequent rehabilitation at home after stroke: one-year outcomes and use of healthcare services.

BACKGROUND: There is a lack of knowledge about patients' journeys across the stroke care continuum, especially regarding the transition from inpatient to outpatient care and rehabilitation. Therefore, the aim of the present study was to explore and describe patterns of healthcare use over a one-year period, health outcomes at 3 and 12 months for patients following a referral-based transition to subsequent rehabilitation in the home, and the caregiver burden on their significant others. A further aim was to explore factors associated with the use of rehabilitation and healthcare after the referral-based transition to continued rehabilitation in the home for people recovering from a stroke. METHODS: Data regarding healthcare use during the first 12 months post-stroke was collected from the Region Stockholm computerized register. Data on patient characteristics, disease-related data, and functioning were retrieved drawn from medical records and questionnaires. Descriptive statistics were used to present healthcare use, participants' characteristics, disease-related data, and patient functioning. Multivariable regression models were created to explore associations between the total number of outpatient contacts, total visits with the neurorehabilitation team, and the independent variables. RESULTS: The mean age for the 190 participants was 73 years for men and 78 years for women. Twenty-one participants (11%) had an acute rehospitalization within 30 days after discharge, and 41 participants (21%) were re-hospitalized within 90 days. Twenty-two (12%) of the participants had no visits with the neurorehabilitation team, 73 (39%) participants had 1-3 visits, 57 (30%) had 4-16 visits, and 38 (20%) had ≥17 visits. Female sex and length of hospital stay were associated with a higher number of visits with the neurorehabilitation team. Living alone, higher self-rated recovery, and being able to walk independently were associated with a lower number of visits with the neurorehabilitation team. Female sex, having home help services before the stroke, longer length of hospital stay, and more comorbidities were associated with a higher number of outpatient contacts. CONCLUSIONS: The findings indicate that there is no generic pattern of healthcare use during the first-year post-stroke in patients receiving referral-based transition to continued rehabilitation in the home. The different patterns of healthcare use seemed to mirror the participants' level of functioning. However, there is a need to further investigate how follow-up and rehabilitation correspond to the needs of patients and their significant others in the short- and long-term perspective. TRIAL REGISTRATION: ClinicalTrials.gov , registration number: NCT02925871 . Date of registration: October 6, 2016.

Person-centred care transitions for people with stroke: study protocol for a feasibility evaluation of codesigned care transition support.

BACKGROUND: Care transitions following stroke should be bridged with collaboration between hospital staff and home rehabilitation teams since well-coordinated transitions can reduce death and disability following a stroke. However, health services are delivered within organisational structures, rather than being based on patients' needs. The aim of this study protocol is to assess the feasibility, operationalised here as fidelity and acceptability, of a codesigned care transition support for people with stroke. METHODS: This study protocol describes the evaluation of a feasibility study using a non-randomised controlled design. The codesigned care transition support includes patient information using videos, leaflets and teach back; what-matters-to me dialogue; a coordinated rehabilitation plan; bridged e-meeting; and a message system for cross-organisational collaboration. Patients with stroke, first time or recurrent, who are to be discharged home from hospital and referred to a rehabilitation team in primary healthcare for continued rehabilitation in the home will be included. One week after stroke, data will be collected on the primary outcome, namely satisfaction with the care transition support, and on the secondary outcome, namely health literacy and medication adherence. Data on use of healthcare will be obtained from a register of healthcare contacts. The outcomes of patients and significant others will be compared with matched controls from other geriatric stroke and acute stroke units, and with matched historic controls from a previous dataset at the intervention and control units. Data on acceptability and fidelity will be assessed through interviews and observations at the intervention units. ETHICS AND DISSEMINATION: Ethical approvals have been obtained from the Swedish Ethical Review Authority. The results will be published open-access in peer-reviewed journals. Dissemination also includes presentation at national and international conferences. DISCUSSION: The care transition support addresses a poorly functioning part of care trajectories in current healthcare. The development of this codesigned care transition support has involved people with stroke, significant other, and healthcare professionals. Such involvement has the potential to better identify and reconceptualise problems, and incorporate user experiences. TRIAL REGISTRATION NUMBER: http://www.clinicaltrials.gov id: NCT02925871. Date of registration 6 October 2016. PROTOCOL VERSION: 1.

Self-management challenges following hospital discharge for patients with multimorbidity: a longitudinal qualitative study of a motivational interviewing intervention.

OBJECTIVES: The aim of this study was to describe challenges in self-management activities among people with multimorbidity during a 4-week post-discharge period. DESIGN: This is a longitudinal qualitative study using data from a randomised controlled trial (RCT) of motivational interviewing (MI) sessions. SETTING: The RCT was conducted at six wards in two hospitals-one university hospital and one general hospital in Stockholm, Sweden, during 2016-2018. PARTICIPANTS: Sixteen participants from the intervention group, diagnosed with heart failure or chronic obstructive pulmonary disease and at least one other chronic condition, were purposively selected for this study. INTERVENTIONS: Each participant had four or five post-discharge MI sessions with a trained social worker during a period of approximately 4 weeks. The sessions were recorded digitally and analysed using content analysis. Altogether, 70 recorded sessions were analysed. RESULTS: Self-management after hospital discharge was a dynamic process with several shifting features that evolved gradually over time. Patients with multimorbidity experienced two major challenges with self-management in the first 4 weeks following hospital discharge: 'Managing a system-centred care' and 'Handling the burden of living with multiple illnesses at home post-discharge'. CONCLUSIONS: Self-management for patients with multimorbidity in the first post-discharge period does not equate to a fixed set of tasks, but varies over the post-discharge period. Self-management challenges include not only the burden of the disease itself, but also that of navigating and understanding the healthcare system. Hence, self-management support post-discharge involves both aiding patients with care coordination and meeting their gradually shifting disease-related needs. TRIAL REGISTRATION NUMBER: NCT02823795.

The manifestation of participation within a co-design process involving patients, significant others and health-care professionals.

BACKGROUND: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed. OBJECTIVE: The aim of this study was to describe how user participation manifests itself within a co-design process involving patients, significant others and health-care professionals, including potential enablers or barriers. METHODS: This study was conducted in the context of a co-design process of a new person-centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi-structured interviews and questionnaires. RESULTS: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever-adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute. DISCUSSION/CONCLUSION: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co-design processes should allow for varying levels of participation among the participants and throughout the process. PATIENT OR PUBLIC CONTRIBUTION: Patients, significant others and health-care professionals participated as co-designers of a care transition model between hospital and home.

Design and Development of an eHealth Service for Collaborative Self-Management among Older Adults with Chronic Diseases: A Theory-Driven User-Centered Approach.

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 professionals was developed. The feasibility study with two nurses and five patients led to a redesign and highlighted the importance of adequately addressing not only varying user needs but also the complex nature of healthcare organizations when implementing new services and processes in chronic care management.

"Standing on common ground" - a qualitative study of self-management support for patients with multimorbidity in primary health care.

BACKGROUND: Multimorbidity, the co-existence of two or more chronic conditions in an individual, is present in most patients over 65 years. Primary health care (PHC) is uniquely positioned to provide the holistic and continual care recommended for this group of patients, including support for self-management. The aim of this study was to explore professionals', patients', and family caregivers' perspectives on how PHC professionals should support self-management in patients with multimorbidity. This study also includes experiences of using telemedicine to support self-management. METHODS: A mixed qualitative method was used to explore regular self-management support and telemedicine as a tool to support self-management. A total of 42 participants (20 physicians, 3 registered nurses, 12 patients, and 7 family caregivers) were interviewed using focus group interviews (PHC professionals), pair interviews (patients and family caregivers), and individual interviews (registered nurses, patients, and family caregivers). The study was performed in urban areas in central Sweden and rural areas in southern Sweden between April 2018 and October 2019. Data were analyzed using content analysis. RESULTS: The main theme that emerged was "Standing on common ground enables individualized support." To achieve such support, professionals needed to understand their own views on who bears the primary responsibility for patients' self-management, as well as patients' self-management abilities, needs, and perspectives. Personal continuity and trustful relationships facilitated this understanding. The findings also indicated that professionals should be accessible for patients with multimorbidity, function as knowledge translators (help patients understand their symptoms and how the symptoms correlated with diseases), and coordinate between levels of care. Telemedicine supported continual monitoring and facilitated patient access to PHC professionals. CONCLUSION: Through personal continuity and patient-centered consultations, professionals could collaborate with patients to individualize self-management support. For some patients, this means that PHC professionals are in control and monitor symptoms. For others, PHC professionals play a less controlling role, empowering patients' self-management. Development and improvement of eHealth tools for patients with multimorbidity should focus on improving the ability to set mutual goals, strengthening patients' inner motivation, and including multiple caregivers to enhance information-sharing and care coordination.

Perceived Quality of Care Transitions between Hospital and the Home in People with Stroke.

OBJECTIVES: To explore the perceived quality of care transitions from hospital to the home with referral to subsequent rehabilitation in the home, and factors associated with low perceived quality, in people with stroke. DESIGN: Observational study. SETTING AND PARTICIPANTS: Eligible were patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region and discharged home with referral to a neurorehabilitation team in primary care. METHODS: Data on perceived quality of care transition was collected with the Care Transition Measure (CTM-15) 1 week after discharge. Additional data were mainly retrieved from medical records. To analyze difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable regression analyses were performed. Thereafter, multivariable regression models were created to explore associations between low perceived quality and the independent variables. RESULTS: Mean age of the 189 participants was 75 years and 91% had a mild or very mild stroke. The majority perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. The association was weak between patient or clinical characteristics and the perceived quality. CONCLUSION AND IMPLICATIONS: Our findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition after stroke. Special attention should be given to people with severe stroke.

Perceptive Dialogue for Linking Stakeholders and Units During Care Transitions - A Qualitative Study of People with Stroke, Significant Others and Healthcare Professionals in Sweden.

INTRODUCTION: Care transitions are a complex set of actions that risk poor quality outcomes for patients and their significant others. This study explored the transition process between hospital and continued rehabilitation in the home. The process is explored from the perspectives of people with stroke, significant others and healthcare professionals in Stockholm, Sweden. METHOD: Focus group interviews (n = 10), semi-structured individual interviews (n = 23) and interviews in dyad (n = 4) were conducted with healthcare professionals, people with stroke and significant others, altogether 71 participants. Data was collected and analyzed using Grounded Theory. RESULTS: One core category "Perceptive dialogue for a coordinated transition", and two categories "Synthesis of parallel processes for common understanding" and "The forced transformation from passive attendant to uninformed agent" emerged from the analysis. The transition consisted of several parallel processes which made it difficult for the stakeholders to get a common understanding of the transition as a whole. Enabling a perceptive dialogue was as a prerequisite for the creation of a common understanding of the care transition. CONCLUSION: This study elucidates that a perceptive dialogue with patients/significant others as well as within and across organizations is part of a coordinated and person-centred transition. There is an extensive need for increased involvement of patients and significant others regarding dialogue about health conditions, procedures at the hospital and preparation for self-management after discharge.

Validation of the patient activation measure in patients at discharge from hospitals and at distance from hospital care in Sweden.

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 consecutively handed a questionnaire, 248 consented to participate, yielding a response rate of 47.6%. The average measure for each category advanced monotonically. The difficulty of the PAM items ranged from - 1.55 to 1.26. The infit and outfit values for the individual items were acceptable. Items 1, 2, and 4 showed disordered thresholds. The mean person location was 1.48 (SD = 1.66). The person-item map revealed that there were no item representations at the top of the scale. The evidence for unidimensionality was ambiguous and response dependency was seen in some items. DIF was found for age. The person separation index was 0.85. CONCLUSION: The Swedish PAM-13 was reliable, but was not conclusively found to represent one underlying construct. It seems that the Swedish PAM-13 lacks strong evidence for substantive, content, and structural validity. Although valid and reliable measures of ability for activation in self-care among patients are highly warranted, we recommend further development of PAM-13 before application in everyday clinical care.

The Information Flow in a Healthcare Organisation with Integrated Units.

INTRODUCTION: Integrated care is believed to provide support to patients with multiple long-term and complex conditions. Transparency in information delivery is key for shared decision-making, and co-production of care. This study aimed to explore information pathways within an integrated healthcare and social care organisation and describe how information continuity was delivered for an older patient with complex care needs. METHODS: An explorative single-case study conducted in a Swedish healthcare organization where municipality and the county council have integrated their services. One focus group discussion and six individual interviews were conducted. RESULTS: Information flow to partners in care was obstructed, with compensatory double documentation, complementary information channels, and information loss. A heavy burden was on the patient and relatives to keep track of and communicate information between different caregivers. Patients were expected to be active partners in their own care, but were largely excluded from the information flow. DISCUSSION: Even integration of care organisations does not imply that integrated care is delivered at the sharp end of practice. An integrated electronic health record is needed to improve accessibility of care information from within all the organisations, facilitating handovers between professionals and levels of care, and involving patients in the information flow.

Why patients decline participation in an intervention to reduce re-hospitalization through patient activation: whom are we missing?

BACKGROUND: Despite worldwide interest in reducing re-hospitalization, there is limited knowledge regarding characteristics of patients who chose to decline participation in such efforts and why. The aim is to explore reasons to decline participation in an intervention using motivational interviewing to reduce re-hospitalization through patient activation for persons with chronic obstructive pulmonary disease or heart failure. METHODS: This study uses data from 385 patients who were asked about participating in a randomized controlled trial; of these, 232 declined participation. Data on age, gender, and diagnosis were collected for those who agreed to participate and those who declined. Reasons to decline participation were collected for those who were asked to participate but refused. The stated reasons to decline were analyzed using content analysis, and the categories identified were used for the statistical analysis. RESULTS: The main reasons for declining participation were having sufficient support (17.5%), no need for support (16%), being too ill (14.6%), and lack of time for illness-related activities (14.2%). A statistically significant negative association between age and willingness to participate was found (odds ratio = - 0.03, 95% confidence interval 0.95-0.99). CONCLUSIONS: Those who agreed to participate were younger than non-participants, and non-participants either lacked time for illness-related activities or did not have the energy needed to become involved in the intervention. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02823795 . Registered on 1 July 2016.

Exploring patient safety in Swedish specialised home healthcare: an interview study with multidisciplinary teams and clinical managers.

OBJECTIVE: Home healthcare is the fastest growing arena in the healthcare system but patient safety research in this context is limited. The aim was to explore how patient safety in Swedish specialised home healthcare is described and adressed from multidisciplinary teams' and clinical managers' perspectives. DESIGN: An explorative qualitative study. SETTING: Multidisciplinary teams and clinical managers were recruited from three specialised home healthcare organisations in Sweden. METHODS: Nine focus group interviews with multidisciplinary teams and six individual interviews with clinical managers were conducted, in total 51 participants. The data were transcribed verbatim and analysed using qualitative content analysis. RESULTS: Patient safety was inherent in the well-established care ideology which shaped a common mindset between members in the multidisciplinary teams and clinical managers. This patient safety culture was challenged by the emerging complexity in which priority had to be given to standardised guidelines, quality assessments and management of information in maladapted communication systems and demands for required competence and skills. The multiple guidelines and quality assessments that aimed to promote patient safety from a macro-perspective, constrained the freedom, on a meso-level and micro-level, to adapt to challenges based on the care ideology. CONCLUSION: Patient safety in home healthcare is dependent on adaptability at the management level; the team members' ability to adapt to the varying conditions and on patients being capable of adjusting their homes and behaviours to reduce safety risks. A strong culture related to a patient's value as a person where patients' and families' active participation and preferences guide the decisions, could be both a facilitator and a barrier to patient safety, depending on which value is given highest priority.