Development of Fewer Falls in MS-An Online, Theory-Based, Fall Prevention Self-Management Programme for People With Multiple Sclerosis.

OBJECTIVE: The aim of this study was to describe the process used to develop a theory-based, online fall prevention self-management programme for ambulatory and non-ambulatory people with multiple sclerosis (pwMS). METHODS: The development process was guided by the Medical Research Council framework of complex interventions and began with a scoping review of the literature on self-management of falls in pwMS. Subsequent phases of development were performed through iterative and concurrent processes and were informed by the perspectives of pwMS and healthcare professionals with MS expertise. RESULTS: Through a systematic and iterative process in close collaboration with pwMS and healthcare professionals, a theory-based online fall prevention self-management programme, Fewer Falls in MS, for ambulatory and non-ambulatory pwMS was developed. The programme is grounded in theory and pedagogical models and features utilization of action plans to address diverse influences on fall risks. CONCLUSIONS: A carefully operationalized definition of self-management and an iterative co-development process were essential to the creation of the Fewer falls in MS programme. Continuation of the co-development process and collaboration with end users was needed to refine the programme. PATIENT OR PUBLIC CONTRIBUTION: PwMS and healthcare professionals were involved throughout the development process of the programme. The patient organization Neuro Sweden was contacted in the initial phase to discuss the relevance of a self-management programme to prevent falls in MS. They supported the research group (all authors) in identification of and contact with pwMS with interest to participate. Three members of the research group (S.T.J., M.F. and C.Y.), that is, the operative group, met neuro Sweden and one pwMS to further discuss the relevance of a self-management programme to prevent falls. To develop the process and content of the fall prevention programme, a co-design process was performed together with pwMS and healthcare professionals. The results of the co-design process are presented in this manuscript. In addition to participating in the co-design process, pwMS and healthcare professionals provided feedback to the research group on programme process and content on several occasions during the subsequent programme development process. In a pretest (Beta version) of the programme, four pwMS acted as test subjects and provided additional feedback on the programme to the research group. TRIAL REGISTRATION: NCT04317716.

Struck by stroke - experiences of living with stroke in a rural area in Uganda.

BACKGROUND: The global burden of stroke is increasing and persons with low socioeconomic status are among those worst affected. In Uganda, stroke is estimated to be the sixth highest ranking cause of death. The Ugandan healthcare system is reported to be inequitable, where poorer populations often live in rural areas with long distances to health care. Stroke rehabilitation is often scarce, with less financial and human resources. The aim of this study was to explore and describe the consequences of stroke in daily activities in everyday life for people in a rural part of Masaka in Uganda. METHODS: Qualitative study design. Fourteen persons who had had stroke and were living in their home environment were interviewed about their experiences of having a stroke and managing their lives after the stroke incident. The interviews were analysed using thematic analysis. In addition, sociodemographic data and level of independence (Barthel Index and Stroke Impact Scale 3.0) was collected to describe participant characteristics. RESULTS: Most of the participants had major consequences of stroke and described that they were dependent on support for managing their daily activities. Five themes were identified in the analysis: (1) Accepting and adapting to new ways of managing everyday life, (2) Changing roles and hierarchical positions, (3) Depending on caregiver support, (4) Interrupted care due to economic constraints, (5) Stroke leading to losses and losses leading to stroke. CONCLUSIONS: The consequences of stroke on the persons' daily lives clearly reached beyond the person with stroke, affecting the whole family and their proximate social networks. These consequences included increased burdens on caregivers and a worsened economic situation for all persons affected. Therefore, interventions for stroke management should preferably not only target the individual affected by stroke, but also support the caregivers in the caring and rehabilitation process. Home rehabilitation approaches with a focus on improving health literacy are suggested.

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.

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.

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.

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation.

BACKGROUND: Identification of people with multiple sclerosis (PwMS) with increased risk of restricted participation in social and lifestyle activities (e.g. social outings and pursuing a hobby) could guide the development of interventions supporting sustained participation. OBJECTIVE: To explore changes in participation in complex and social everyday activities over 10 years in PwMS in relation to multiple sclerosis (MS) severity and to identify predictors of sustained participation. METHODS: This study was based on a 10-year follow-up of 264 PwMS living in Stockholm County, Sweden. Ten-year changes in participation in social/lifestyle activities were assessed and compared between PwMS with different MS severity with the Frenchay Activities Index using age- and sex-related normative values. Multiple logistic regression analyses were used to predict sustained participation at 10 years using personal factors, disease severity and functioning as independent variables. RESULTS: While a majority of people with mild MS demonstrated sustained participation (67%), a minority of PwMS moderately (26%) and severely affected by MS (5%) demonstrated sustained participation. Significant predictors of sustained participation after 10 years were walking speed ⩾1.2 m/s and ⩾32 correct responses on the Symbol Digit Modalities Test. CONCLUSION: Our findings accentuate the importance for health services to support mobility and cognition to obtain sustained participation.

F@ce: a team-based, person-centred intervention for rehabilitation after stroke supported by information and communication technology - a feasibility study.

BACKGROUND: Globally, there is a growing use of Information and Communication Technology (ICT), including mobile phones, tablets and computers, which are being integrated into people's daily activities. An ICT-based intervention called F@ce was developed in order to provide a structure for the process in stroke rehabilitation and facilitate change by integrating a global problem-solving strategy using SMS alerts. The aim of the study was to evaluate the feasibility of i) F@ce within in-patient and primary care rehabilitation after stroke, ii) the study design and outcome measures used, and iii) the fidelity, adherence and acceptability of the intervention. METHODS: Three teams comprising occupational therapists and physiotherapists who work in neurological rehabilitation participated in a preparatory workshop on F@ce and then enrolled 10 persons with stroke to participate in the intervention. Goals were set using the Canadian Occupational Performance Measure (COPM) and the participants with stroke rated their performance and satisfaction with the activities associated with the three goals every day for 8 weeks. Data were collected at inclusion, at four and 8 weeks, using the COPM, Stroke Impact Scale, Frenchay Activities Index, Life Satisfaction Checklist, Self-Efficacy Scale, Hospital Anxiety and Depression Scale, Fatigue Severity Scale, follow-up survey, daily ratings on the web platform and logbooks. RESULTS: All of the participants showed increased scores in the primary outcome (COPM) and a clinically meaningful improvement of ≥2 points was found in four participants regarding performance and in six participants regarding satisfaction. Overall fidelity to the components of F@ce was good. The response rates to the F@ce web platform were 44-100% (mean 78%). All of the participants stated that F@ce had supported their rehabilitation. CONCLUSION: The results indicate that the most beneficial part of F@ce was the person-centred, goal-setting process and SMS alerts. All participants were satisfied with F@ce and highlighted the benefits of receiving daily alerts about their goals. This encouraged them to be more active. The only downside mentioned was that they felt under an obligation to practice, although this was described as "a positive obligation".

Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.

AIMS AND OBJECTIVES: This study set out to describe caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction. BACKGROUND: Knowledge about factors related to caregivers' health-related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included. Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction Checklist) and caregiver- and patient-related factors. Associations were explored by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction. CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction. RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Experiences of Sexuality Six Years After Stroke: A Qualitative Study.

BACKGROUND: Little is known about the long-term consequences of stroke on sexuality, and studies on how individuals with stroke communicate with health care professionals about information and/or interventions on sexuality are even sparser. AIM: To explore experiences of sexuality 6 years after stroke, including communication with health care professionals concerning sexuality. METHODS: This qualitative study was based on data collected by semistructured interviews with 12 informants 43 to 81 years old 6 years after stroke. Interviews were recorded and transcribed verbatim and thematic analysis was performed. RESULTS: The analysis resulted in the following three themes. Not exclusively negative experiences in sexuality after stroke: Most informants experienced some change in their sexual life from before their stroke. Decreased sexual interest and function were ascribed to decreased sensibility, post-stroke pain, or fatigue. Some informants reported positive changes in sexuality, which were attributed to feelings of increased intimacy. Individual differences and variability on how to handle sexuality after stroke: Different strategies were used to manage unwanted negative changes such as actively trying to adapt by planning time with the partner and decreasing pressure or stress. Open communication about sexuality with one's partner also was described as important. Strikingly, most informants with negative experiences of sexual life attributed these to age or a stage in life and not to the stroke or health issues. Furthermore, they compared themselves with others without stroke but with changes in sexuality, thus achieving a sense of normality. Communication and counseling concerning sexuality-many unmet needs: Experiences of communication with health care professionals varied. Very few informants had received any information or discussed sexuality with health care professionals during the 6 years since the stroke, although such needs were identified by most informants. CLINICAL TRANSLATION: When encountering individuals with previous stroke, there is a need for vigilance concerning individual experiences of stroke on sexuality to avoid under- or overestimating the impact and to raise the subject, which currently might be seldom. STRENGTHS AND LIMITATIONS: Individuals with long-term diverse consequences of stroke and with different sociodemographic backgrounds were interviewed. Because most individuals in the present study had retained functioning, this could decrease transferability to populations with more severe sequelae after stroke. CONCLUSIONS AND IMPLICATIONS: The individuals in the present study had different experiences of sexuality after stroke. The results point to the importance of acknowledging sexual rehabilitation as part of holistic person-centered stroke rehabilitation. Nilsson MI, Fugl-Meyer K, von Koch L, Ytterberg C. Experiences of Sexuality Six Years After Stroke: A Qualitative Study. J Sex Med 2017;14:797-803.

The case of value-based healthcare for people living with complex long-term conditions.

BACKGROUND: There is a trend towards value-based health service, striving to cut costs while generating value for the patient. The overall objective comprises higher-quality health services and improved patient safety and cost efficiency. The approach could align with patient-centred care, as it entails a focus on the patient's experience of her or his entire cycle of care, including the use of well-defined outcome measurements. Challenges arise when the approach is applied to health services for people living with long-term complex conditions that require support from various healthcare services. The aim of this work is to critically discuss the value-based approach and its implications for patients with long-term complex conditions. Two cases from clinical practice and research form the foundation for our reasoning, illustrating several challenges regarding value-based health services for people living with long-term complex conditions. DISCUSSION: Achieving value-based health services that provide the health outcomes that matter to patients and providing greater patient-centredness will place increased demands on the healthcare system. Patients and their informal caregivers must be included in the development and establishment of outcome measures. The outcome measures must be standardized to allow evaluation of specific conditions at an aggregated level, but they must also be sensitive enough to capture each patient's individual needs and goals. Healthcare systems that strive to establish value-based services must collaborate beyond the organizational boundaries to create clear patient trajectories in order to avoid fragmentation. The shift towards value-based health services has the potential to align healthcare-service delivery with patient-centred care if serious efforts to take the patient's perspective into account are made. This is especially challenging in fragmented healthcare systems and for patients with long-term- and multi-setting-care needs.

Variations in and predictors of the occurrence of depressive symptoms and mood symptoms in multiple sclerosis: a longitudinal two-year study.

BACKGROUND: There is limited knowledge regarding how depressive symptoms and a cluster of specific mood symptoms in people with multiple sclerosis (MS) vary over time and how they are influenced by contributing factors. Therefore, the aims of this study were a) to describe variations over 2 years in the occurrence of depressive symptoms and mood symptoms in a sample of people with MS, and b) to investigate the predictive value of sex, age, coping capacity, work status, disease severity, disease course, fatigue, cognition, frequency of social/lifestyle activities, and perceived impact of MS on health, on the occurrence of depressive symptoms and mood symptoms. METHODS: Through using a protocol of measures of functioning and perceived impact of MS on health, comprising of the Beck Depression Inventory, 219 people with MS were assessed at 0, 12 and 24 months. Predictive values were explored with Generalised Estimating Equations. RESULTS: Proportions with depressive symptoms varied significantly (p < 0.001) from 21 to 30% between the three time points. Proportions with mood symptoms varied significantly (p < 0.001) from 14 to 17% between the three time points. Weak coping capacity and reduced frequency of social/lifestyle activities predicted the occurrence of depressive symptoms and mood symptoms, as did the psychological impact of MS on health in interaction with time. For people with MS of working age, not working predicted the occurrence of depressive symptoms and mood symptoms, as did the physical impact of MS on health on the occurrence of mood symptoms. CONCLUSIONS: The occurrence of depressive symptoms and mood symptoms in people with MS vary over a 2-year time period; almost half have depressive symptoms at least once. Health care services should develop strategies aimed at identifying people with MS who are depressed or who develop depressive symptoms. Interventions for alleviating depressive symptoms should consider the individual's coping capacity and perceived impact of MS on health, and facilitate their ability to maintain participation in valued everyday activities.

Occurrence and Predictors of Falls in People With Stroke: Six-Year Prospective Study.

BACKGROUND AND PURPOSE: The purpose was to investigate the occurrence of self-reported falls in people with stroke at 3, 6, and 12 months and 6 years post stroke and predictors for falls during 6 years. METHODS: A prospective study involving 121 people with stroke. Data were obtained through structured interviews and assessments. Generalized estimating equation modeling using proportional odds was used to explore the predictive value of fall history, functioning/disability, and personal factors during 6 years. RESULTS: The proportion of fallers constituted of 35%, 26%, 33%, and 35% of the sample at 3, 6, and 12 months and 6 years of follow-up, respectively. Higher perceived effect of stroke on activities of daily living (odds ratio, 1.37; 95% confidence interval, 1.04-1.80), falls at 3 months (odds ratio, 1.0; 95% confidence interval, 1.01-3.94), and no gait/balance disability at baseline (odds ratio, 7.29; 95% confidence interval, 1.99-26.73) were predictors for future falls. During the 6 years, the odds for a fall decreased for participants with gait/balance disability at baseline but increased for those with no gait/balance disability. CONCLUSIONS: Results highlight the importance of performing fall risk evaluations over time among people with stroke, even when gait and balance functioning initially post stroke is good.

A 10-year population-based study of people with multiple sclerosis in Stockholm, Sweden: use of and satisfaction with care and the value of different factors in predicting use of care.

BACKGROUND: The national strategy for treatment of chronic diseases - including MS - and changes in the Swedish welfare system, call for analyses of the use of, and patient satisfaction with, care in a long-term perspective. The aim was therefore to explore the use of care and the predictive value of personal factors, disease-specific factors and functioning on the use of care and to explore patient satisfaction with care in a 10-year perspective. METHODS: Information regarding personal factors, disease-specific factors, functioning and satisfaction with care was collected by home-visits; use of care was collected from the Stockholm County Council computerised register. RESULT: Data from 121 people with MS (PwMS) was collected. Primary care accounted for the majority of all care. Neurology and Rehabilitation Departments together accounted for two-thirds of all hospital outpatient care. Rehabilitation Departments accounted for one-third of the total number of inpatient days. Lower coping capacity, impaired manual dexterity and activity of daily living dependency at baseline, together with progress in MS disability predicted a higher use of care. Overall, patient satisfaction with care was stable over time. CONCLUSION: The extensive use of care offers challenges to care coordination. Implementation of person-centred care could be a strategy to increase efficacy/outcome of care.

Acceptability of two mobile applications to support cross-sectoral, person-centred and empowering stroke rehabilitation - a process evaluation.

AIM: To evaluate the acceptability of two co-designed mobile applications Mit Sygehus [a knowledge-based solution] and Genoptræn.dk [a self-training solution] to support a cross-sectoral, person-centred and empowering stroke rehabilitation. SETTING: The applications were implemented and tested throughout two stroke rehabilitation trajectories in Southern Denmark, comprising two acute, two sub-acute and two municipal stroke rehabilitation settings. METHODS, PARTICIPANTS AND ANALYSIS: A process evaluation focusing on acceptability was conducted. Individual and dyadic interviews were performed with ten stroke survivors (three women and seven men, aged 50-84) with moderate stroke and seven significant others (five women and two men, aged 50-78) post-rehabilitation. A constructivist Grounded Theory analysis was used to explore what, why, when, and how the apps worked or did not work throughout the stroke rehabilitation trajectory and if adaptions were needed. RESULTS: Participants found that Mit Sygehus provided adequate and sufficient knowledge and was easy to use, however, acceptability of Mit Sygehus declined throughout the rehabilitation process. Also, knowledge on 'return-to-work' and 're-gaining driver's license/permission to drive' needed to be developed. The content in Genoptræn.dk was perceived as acceptable, through content being person-centred, motivating and meaningful. Genoptræn.dk furthermore, supported the transfer between rehabilitation settings, provided a sense of progress throughout the rehabilitation process, facilitated positive habits regarding self-training, and relieved the burden on significant others. Genoptræn.dk was perceived most acceptable in the sub-acute rehabilitation setting and declined when rehabilitation continued in the municipal setting. CONCLUSION: Stroke survivors and their significant others found Mit Sygehus and Genoptræn.dk acceptable to support cross-sectoral, person-centred and empowering stroke rehabilitation, however acceptability declined throughout the rehabilitation process. Further investigations are required to determine how cognitive rehabilitation can play a greater role in app-supported stroke rehabilitation and how the need for more long-term follow-up can be supported.

By using process evaluation, the user acceptability of newly developed and complex interventions can be evaluated.ICT and app-based solutions can support cross-sectoral person-centred and empowering stroke rehabilitation.Therapists play an important role in implementing and supporting stroke survivors using app-based solutions to support person-centred and empowering stroke rehabilitation.

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.

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.

Physiotherapists' and occupational therapists' experiences with cross-sectoral coordination of rehabilitation for people with mild stroke - a qualitative interview study.

PURPOSE: To meet the needs of people with mild stroke, multidisciplinary, person-centred, cross-sectoral rehabilitation is internationally recommended. However, there seem to be gaps in the rehabilitation process. The aim of this study was to investigate how occupational therapists and physiotherapists experience working in cross-sectoral rehabilitation for people with mild stroke. MATERIALS AND METHODS: Data were generated through interviews with occupational therapists and physiotherapists working in four different Danish rehabilitation settings. Four group interviews and two individual interviews with a total of 19 participants were conducted. Ricoeur's theory of interpretation was used to interpret and discuss the data. RESULTS: Four themes were identified: the risk of overlooking symptoms: better safe than sorry; varying degrees of involvement of people with mild stroke; spontaneous involvement of relatives; and contextual challenges for coherence in the rehabilitation process. CONCLUSION: The therapists experienced challenges in coordinating rehabilitation across sectors due to the timing of the needs assessment and contextual challenges. They used a preventive strategy of sending a plan or referral for later re-assessment. The therapists involved people with mild stroke to varying degrees. They involved relatives spontaneously. For successful rehabilitation, ongoing assessment, recognition of collaboration factors and relative involvement are essential.

It is crucial to continuously evaluate needs and establish goals throughout the entirety of the rehabilitation process.Recognizing that the capacity and resources of people with mild strokes to collaborate with professionals are contextually, relationally, and individually determined is important.Involvement of relatives should be strengthened on many levels from the institutional level to the personal level.

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.

What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke--amount, place, operator or timing?

BACKGROUND AND OBJECTIVE: To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self-reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke. METHODS: The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self-reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home-based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset. RESULTS: Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (OR 8.36, CI 1.40-49.88 P = 0.020) were more likely to report met rehabilitation needs. CONCLUSION: For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self-reported met needs for rehabilitation.

Use of health services in people with multiple sclerosis with and without depressive symptoms: a two-year prospective study.

BACKGROUND: To organize tailored healthcare for people with multiple sclerosis (MS), knowledge about patterns in the use of healthcare among subgroups, such as those with depressive symptoms, is essential. Thus, the purpose of this study was to explore and compare the use of health services in people with MS and depressive symptoms, and without depressive symptoms over a period of 30 months. METHODS: Data on the use of health services by 71 people with MS and depressive symptoms, and 102 with no depressive symptoms were collected from a computerised register and by interview, then categorized with regard to disease severity (Expanded Disability Status Scale). RESULTS: People with EDSS mild and depressive symptoms used more outpatient and inpatient care compared to those with no depressive symptoms. Furthermore, they received more unsalaried informal care as well as intense rehabilitation periods. CONCLUSIONS: The issues underlying the differences in the use of healthcare need to be explored further, as well as the plausible implications for the organization of healthcare services for people with MS and depressive symptoms. Furthermore, the life situations of caregivers of people with MS and depressive symptoms should be considered, and appropriate interventions supplied in order to diminish caregiver burden.