Handling fatigue in everyday activities at five years after stroke: A long and demanding process.

BACKGROUND: Fatigue is common and can be challenging after stroke. AIM: To explore how post-stroke fatigue (PSF) was experienced and handled among people with stroke in their performance of everyday activities and in participation in social activities five years after stroke. METHODS: Nine persons who perceived PSF one year after stroke onset were interviewed five years later. The interviews were analysed using qualitative content analysis. RESULTS: Most participants experienced PSF even five years after stroke and reported longstanding difficulties in everyday activities. Handling fatigue-a long slow process with invisible adjustments in everyday life emerged as the theme. By implementing new strategies in everyday life their PSF lessened over time. Understanding among significant others as to how PSF appears and providing information about PSF early after stroke was perceived important. CONCLUSION: This study adds new knowledge regarding experiences of PSF and long-term support needs. Even if PSF still was reported the participants experienced improvements in everyday life through the application of new strategies. Information about PSF and strategies for managing everyday life should be provided during rehabilitation. SIGNIFICANCE: This study is one out of only a few focussing on long-term PSF and adjustment to its consequences in everyday life.

Twenty-Year Benefit From Adjuvant Goserelin and Tamoxifen in Premenopausal Patients With Breast Cancer in a Controlled Randomized Clinical Trial.

PURPOSE: To assess the long-term (20-year) endocrine therapy benefit in premenopausal patients with breast cancer. METHODS: Secondary analysis of the Stockholm trial (STO-5, 1990-1997) randomly assigning 924 premenopausal patients to 2 years of goserelin (3.6 mg subcutaneously once every 28 days), tamoxifen (40 mg orally once daily), combined goserelin and tamoxifen, or no adjuvant endocrine therapy (control) is performed. Random assignment was stratified by lymph node status; lymph node-positive patients (n = 459) were allocated to standard chemotherapy (cyclophosphamide, methotrexate, and fluorouracil). Primary tumor immunohistochemistry (n = 731) and gene expression profiling (n = 586) were conducted in 2020. The 70-gene signature identified genomic low-risk and high-risk patients. Kaplan-Meier analysis, multivariable Cox proportional hazard regression, and multivariable time-varying flexible parametric modeling assessed the long-term distant recurrence-free interval (DRFI). Swedish high-quality registries allowed a complete follow-up of 20 years. RESULTS: In estrogen receptor-positive patients (n = 584, median age 47 years), goserelin, tamoxifen, and the combination significantly improved long-term distant recurrence-free interval compared with control (multivariable hazard ratio [HR], 0.49; 95% CI, 0.32 to 0.75, HR, 0.57; 95% CI, 0.38 to 0.87, and HR, 0.63; 95% CI, 0.42 to 0.94, respectively). Significant goserelin-tamoxifen interaction was observed (P = .016). Genomic low-risk patients (n = 305) significantly benefitted from tamoxifen (HR, 0.24; 95% CI, 0.10 to 0.60), and genomic high-risk patients (n = 158) from goserelin (HR, 0.24; 95% CI, 0.10 to 0.54). Increased risk from the addition of tamoxifen to goserelin was seen in genomic high-risk patients (HR, 3.36; 95% CI, 1.39 to 8.07). Moreover, long-lasting 20-year tamoxifen benefit was seen in genomic low-risk patients, whereas genomic high-risk patients had early goserelin benefit. CONCLUSION: This study shows 20-year benefit from 2 years of adjuvant endocrine therapy in estrogen receptor-positive premenopausal patients and suggests differential treatment benefit on the basis of tumor genomic characteristics. Combined goserelin and tamoxifen therapy showed no benefit over single treatment. Long-term follow-up to assess treatment benefit is critical.

Activities in Daily Living: The development of a new client-centred ADL intervention for persons with stroke.

BACKGROUND: An intervention that contains several interacting components can be defined as a complex intervention. This intervention was developed in accordance with the Medical Research Council (MRC) guidance for complex interventions. AIM: To describe the development, theoretical framework, and content of a client-centred activities in daily living intervention (CADL) for people with stroke. MATERIAL AND METHODS: Different steps were used; identifying the evidence base, identifying/developing theory and the modelling process and outcomes in the development of the CADL. The remodelling of the process and content of the intervention that emerged are defined. RESULTS: Findings from a series of qualitative studies of people with stroke demonstrated the need to develop an ADL intervention based on the clients' lived experiences. The theoretical framework is based on empirical research, theories about human occupation and client-centredness. The CADL is applying an occupational and phenomenological perspective in order to enable agency in daily activities and participation in everyday life among persons with stroke. CONCLUSIONS AND SIGNIFICANCE: The article can be used as an example of how to present the development and theoretical framework of a new complex intervention in occupational therapy.

The delivery of the ReWork-Stroke program: A process evaluation.

BACKGROUND: The ReWork-Stroke program was developed to meet the need for a person-centered rehabilitation program addressing return to work after stroke and was provided by occupational therapists (OTs). OBJECTIVE: To gain knowledge on the implementation process of the ReWork-Stroke program, the mechanisms of impact, and the contextual factors that might have affected the process. METHODS: A case study design was used. Data were collected by interviews with two ReWork-Stroke providers and their logbooks of 13 clients. Content analysis was applied. RESULTS: The ReWork-Stroke program varied in duration (12-48 weeks) and was largely implemented according to plan regarding components and how they were provided. It was mostly delivered at the workplace. Mechanisms of impact were building alliances with clients, providing intervention at the workplace, informing about stroke, assigning co-workers as tutors for clients, and collaboration between stakeholders. CONCLUSIONS: The ReWork-Stroke program can be implemented according to plan and is a flexible person-centered program in which stakeholders, coordinated by an OT, plan and take actions, mostly at the workplace, for the client's return to work. A key factor was recognizing the current work ability after stroke. Further program development includes a more structured evaluation and technical solutions for supporting stakeholders.

The ReWork-Stroke rehabilitation programme described by use of the TIDieR checklist.

BACKGROUND: About half of those that have had stroke in working age return to work (RTW). Few rehabilitation programmes exist focussing RTW after stroke. AIM: To produce a clear replicable description of the ReWork-Stroke rehabilitation programme targeting RTW for people of working age who have had stroke. MATERIALS AND METHODS: The Template for Intervention Description and Replication 12 item checklist was used to describe the ReWork-Stroke programme developed 2013-2014. This paper presents the development, rationale and processes in the programme to enable replication and provide evidence for implementation. RESULTS: Occupational therapists (OTs) skilled in stroke rehabilitation contribute knowledge about consequences of stroke and coordinate stakeholders involved. The ReWork-Stroke is person-centred, includes individual plans and generic components, consists of a preparation and a work trial phase. During the preparation phase, resources and hindrances for RTW are mapped and a plan for work trial is elaborated. During the work trial phase, the intervention is located at the workplace. The OT conducts recurrent follow-ups and collaborates with employers/co-workers. CONCLUSIONS: A person-centred programme has advantages in its flexibility to meet different needs between people and by this thorough description of ReWork-Stroke, others can replicate the programme and its fidelity and evidence can be strengthened.

Work Potential and Work Performance during the First Try-Out of the Person-Centred Return to Work Rehabilitation Programme ReWork-Stroke: A Case Study.

BACKGROUND: This case study explores changes in work potential and work performance for ten people who worked before their stroke while participating in the ReWork-Stroke programme. It describes measures performed by the occupational therapists to enhance work potential and work performance and the participants' level of work re-entry nine months after the start of their work trial. METHODS: Ten people who had experienced a mild or moderate stroke participated. Changes were assessed using the Worker Role Interview and the Assessment of Work Performance. Logbooks relating to work potential and work performance were analysed using content analysis. RESULTS: The participants' work potential was in general supportive to returning to work at baseline and remained so at the three-month follow-up. Most changes occurred in the environmental factors regarding the participants' belief that adaptations at the workplace would make re-entry possible. Changes concerning work performance were predominately in a positive direction. Seven of the participants returned to paid work. CONCLUSION: The ReWork-Stroke programme seems promising for promoting changes in work potential, work performance, and return to paid work. However, further studies are needed to evaluate changes in work potential and work performance and the programme's effectiveness for increasing work re-entry for people who have had stroke.

Employment status of people with multiple sclerosis in relation to 10-year changes in functioning and perceived impact of the disease.

BACKGROUND: Although it is well known that people with multiple sclerosis (PwMS) retire from work early, little is known about how long-term changes in functioning and perceived impact of multiple sclerosis (MS) interact with sustainability of employment. OBJECTIVE: To explore changes in functioning and in perceived impact of MS over 10 years, in relation to employment status of PwMS. METHODS: In order to measure functioning, data on activities (walking ability, fine hand use, personal activities in daily living); participation in activities of everyday life (domestic, outdoor and leisure activities); body functions (cognitive function, fatigue, depressive symptoms); and perceived impact of MS were collected in 116 PwMS at baseline and at a 10-year follow-up. Ten-year changes were explored with the participants divided into four subgroups based on employment status at the follow-up: 1) full-time work at the 10-year follow-up; 2) part-time work at the 10-year follow-up; 3) declined from working at baseline to not working at the 10-year follow-up; and 4) not working at baseline nor at the 10-year follow-up. RESULTS: Patterns of change in functioning for PwMS who worked showed a more apparent deterioration over 10 years among those working part-time with regard to walking ability, fatigue and depressive symptoms. Members of the subgroups who declined from working at baseline to not working at the 10-year follow-up or who were working neither at baseline nor at the follow-up deteriorated the most in functioning. The subgroup whose employment status declined from baseline to follow-up showed a significant decrease in cognitive function and an increase in perceived physical impact of the disease. All subgroups experienced a deterioration in walking ability over the 10-year span, and in all subgroups a majority had limited fine hand use over the span of the study period. CONCLUSION: The deterioration in functioning was most apparent in those PwMS whose employment status declined from working at baseline to not working at the 10-year follow-up. Close monitoring of work situation and frequency of activities and participation in everyday activities, as well as recurrent training of functioning, are suggested for maintaining a high level of functioning and work status, or for supporting transition to an appropriate number of working hours.

Being a co-worker or a manager of a colleague returning to work after stroke: A challenge facilitated by cooperation and flexibility.

Background: The process of return to work is complex. Knowledge is scarce regarding the experiences from co-workers and employers about this process.Aim: To explore and describe how co-workers and managers experience the return to work process involving a colleague with stroke who is participating in a person-centred rehabilitation programme focusing on return to work including a work trial.Material and methods: Seven co-workers and four managers were interviewed during the work trial of a colleague with stroke.Results: Being a co-worker or manager was related to various challenging experiences; the emotional challenge of being a supportive co-worker or manager, the challenging experience of having too much responsibility, and the challenge of being supportive despite a lack of knowledge.Conclusions: The participants placed value on having support from the coordinator for handling different challenges, but despite this they experienced difficulties in being a valuable support. The limited time of work trial and occasional lack of support from the employer were aggravating aspects.Significance: This study highlights the importance of establishing a commitment between the employer and all involved actors in the initial phase in order to create the best possibilities for a fruitful return to work process, including work trial.

Occupational therapists' perceptions of implementing a client-centered intervention in close collaboration with researchers: A mixed methods study.

Background: Integration of research-based knowledge in health care is challenging. Occupational therapists (OTs) need to implement new research-based interventions in clinical practice. Therefore it is crucial to recognize and understand the factors of specific barriers and facilitators affecting the implementation process.Aim: To identify the key factors important for OTs during the implementation process of a complex intervention.Materials and methods: A cross-sectional study with a combination of qualitative and quantitative data in a mixed method design. Forty-one OTs and 23 managers from three county councils in Sweden, responded to a questionnaire one year after the OTs participation in a workshop to prepare for implementation of a client-centered activity of daily living intervention for persons with stroke.Results: Over 70% of the OTs benefitted from reading and discussing articles in the workshop; 60% had faith in the intervention; 69% reported usability of the intervention. High level of support from managers was reported, but less from team members. The therapists' interaction, perceptions of own efforts and contextual influence affected the implementation process.Conclusion: The workshop context with facilitation and access to evidence, supportive organizations and teams, sufficient interaction with researchers and satisfying self-image were successful key factors when involved in research.

Parents' experiences of conducting a goal-directed intervention based on children's self-identified goals, a qualitative study.

AIM/OBJECTIVE: To explore and describe parents' perceptions and experiences of conducting a goal-directed intervention focused on children's self-identified goals. MATERIAL AND METHODS: Individual semi-structured interviews were performed with nine parents (8 mothers, 1 father). All the parents had participated actively in conducting a goal-directed intervention addressing their children's self-identified goals. The interviews were analyzed using qualitative content analysis. RESULTS: From a parental perspective, working on children's self-identified goals was a positive experience. The findings revealed three categories: Goals challenged the parents describes the parents' experiences of the complexity of goal setting. The intervention demanded an intensive and flexible parental engagement; here the parents expressed the importance of active parental engagement, which for some parents could be challenging. The child's personal goals gave more than anticipated describes the parents' experiences of how the children's personal goals positively influenced the children's self-esteem, increased the children's motivation for practice, and helped the children develop more than the parents had anticipated. CONCLUSIONS AND SIGNIFICANCE: In the parents' experience, goal-directed intervention comprehensively relies on their engagement. Follow up's from the occupational therapist motivated the parents and their own child's personal goals gave them more than they could have expected. This indicates the importance of supporting parents and letting children actively participate in the goal setting process.

Experiences of the return to work process after stroke while participating in a person-centred rehabilitation programme.

BACKGROUND: In Sweden, less than 50% of those getting stroke in working age return to work (RTW). Effective rehabilitation programmes need to be developed and therapeutic aspects understood. AIM: To explore and describe how persons with stroke experience their RTW process while participating in a person-centred rehabilitation programme focusing on RTW. MATERIALS AND METHODS: Seven persons with mild or moderate stroke were interviewed twice during the intervention in the vocational training phase using semi-structured interviews. Data were analysed using grounded theory. RESULTS: Having a coordinator by their side gave support and guidance during the RTW process. Knowledge of stroke, strategies and a straightforward communication created a structure for the RTW process. Expressing one's own wishes increased opportunities to influence and decide which path to follow in order to reach the goal. CONCLUSION: Straightforward, open and recurring communication facilitated the possibility to adapt to the situation. These aspects increased insight and awareness which facilitated the RTW process. SIGNIFICANCE: The findings indicate that a precondition for a fruitful RTW process was that suitable platforms at work were created in which the actors involved could cooperate. This knowledge might also be valuable in the RTW process for people with other diagnosis.

Time trends in axilla management among early breast cancer patients: Persisting major variation in clinical practice across European centers.

Background We examined time trends in axilla management among patients with early breast cancer in European clinical settings. Material and methods EUROCANPlatform partners, including population-based and cancer center-specific registries, provided routinely available clinical cancer registry data for a comparative study of axillary management trends among patients with first non-metastatic breast cancer who were not selected for neoadjuvant therapy during the last decade. We used an additional short questionnaire to compare clinical care patterns in 2014. Results Patients treated in cancer centers were younger than population-based registry populations. Tumor size and lymph node status distributions varied little between settings or over time. In 2003, sentinel lymph node biopsy (SLNB) use varied between 26% and 81% for pT1 tumors, and between 2% and 68% for pT2 tumors. By 2010, SLNB use increased to 79-96% and 49-92% for pT1 and pT2 tumors, respectively. Axillary lymph node dissection (ALND) use for pT1 tumors decreased from between 75% and 27% in 2003 to 47% and 12% in 2010, and from between 90% and 55% to 79% and 19% for pT2 tumors, respectively. In 2014, important differences in axillary management existed for patients with micrometastases only, and for patients fulfilling the ACOSOG Z0011 criteria for omitting ALND. Conclusion This study demonstrates persisting differences in important aspects of axillary management throughout the recent decade. The results highlight the need for international comparative patterns of care studies in oncology, which may help to identify areas where further studies and consensus building may be necessary.

Return to work after stroke: Important aspects shared and contrasted by five stakeholder groups.

BACKGROUND: Poor co-operation between the various stakeholders underscores the need for reviewing important factors that facilitate return to work (RTW) after stroke. OBJECTIVE: To explore and describe important aspects expressed by Swedish stakeholders in the RTW process for persons post stroke and to contrast the stakeholders' aspects exploring different perspectives that may influence optimal RTW. METHODS: Data from seven focus group interviews with the stakeholders were analyzed using qualitative content analysis. RESULTS: Three main categories made up the findings; the prolonged RTW process, the need for extended knowledge, and the assessment of work ability in the RTW process. Despite the stakeholders' agreement on these important aspects, they presented divergent views of the categories, representing their diverse agendas. CONCLUSIONS: A stroke coordinator may remediate the stakeholders' divergent perspectives. The coordinator should be versed in stroke specific knowledge and in a person centered approach to inform the decision process regarding RTW, while finding optimal solutions within regulatory boundary conditions. A coordinator could increase collaboration of the various stakeholders, provide support and coordinate services for the client with stroke and the employer throughout the whole process facilitating RTW after stroke. Future studies are needed to confirm this proposal.

A cluster randomized controlled trial of a client-centred, activities of daily living intervention for people with stroke: one year follow-up of caregivers.

OBJECTIVE: Compare caregiver burden, provision of informal care, participation in everyday occupations and life satisfaction of caregivers to people with stroke, who either had received a client-centred, activities of daily living intervention or usual activities of daily living interventions. DESIGN: A multicentre cluster randomized controlled trial in which 16 rehabilitation units were randomly assigned to deliver a client-centred, activities of daily living intervention or usual activities of daily living interventions. Caregiver outcomes were compared cross-sectionally at 12 months and changes in outcomes between three and 12 months after people with stroke were included in the study. SETTING: Inpatient and outpatient rehabilitation. PARTICIPANTS: Caregivers of people with stroke enrolled in the trial. INTERVENTION: A client-centred, activities of daily living intervention aiming to increase agency in daily activities and participation in everyday life for people after stroke. MAIN MEASURES: Caregiver Burden Scale, Occupational Gaps Questionnaire, LiSat-11. RESULTS: There were no differences in outcomes between caregivers in the client-centred, activities of daily living (n = 88) and the usual activities of daily living (n = 95) group at 12 months. The caregiver burden score was 42.7 vs. 41.8, p = 0.75, mean occupational gaps were 3.5 vs. 4.0, p = 0.52 and satisfaction with life was 53% vs. 50%, p = 0.87. There were no differences in changes between three and 12 months. However, within groups there were significant differences in caregiver burden, factor general strain, for caregivers in the client-centred, activities of daily living group, and in provision of informal care for the usual activities of daily living group. CONCLUSION: The client-centred intervention did not bring about any difference between caregiver-groups, but within groups some difference was found for caregiver burden and informal care.

Can children identify and achieve goals for intervention? A randomized trial comparing two goal-setting approaches.

AIM: The efficacy of two different goal-setting approaches (children's self-identified goals and goals identified by parents) were compared on a goal-directed, task-oriented intervention. METHOD: In this assessor-blinded parallel randomized trial, 34 children with disabilities (13 males, 21 females; mean age 9y, SD 1y 4mo) were randomized using concealed allocation to one of two 8-week, goal-directed, task-oriented intervention groups with different goal-setting approaches: (1) children's self-identified goals (n=18) using the Perceived Efficacy and Goal-Setting System, or (2) goals identified by parents (n=16) using the Canadian Occupational Performance Measure (COPM). Participants were recruited through eight paediatric rehabilitation centres and randomized between October 2011 and May 2013. The primary outcome measure was the Goal Attainment Scaling and the secondary measure, the COPM performance scale (COPM-P). Data were collected pre- and post-intervention and at the 5-month follow-up. RESULTS: There was no evidence of a difference in mean characteristics at baseline between groups. There was evidence of an increase in mean goal attainment (mean T score) in both groups after intervention (child-goal group: estimated mean difference [EMD] 27.84, 95% CI 22.93-32.76; parent-goal group: EMD 21.42, 95% CI 16.16-26.67). There was no evidence of a difference in the mean T scores post-intervention between the two groups (EMD 6.42, 95% CI -0.80 to 13.65). These results were sustained at the 5-month follow-up. INTERPRETATION: Children's self-identified goals are achievable to the same extent as parent-identified goals and remain stable over time. Thus children can be trusted to identify their own goals for intervention, thereby influencing their involvement in their intervention programmes.

Participation in the workforce after a traumatic brain injury: a matter of control.

PURPOSE: This study sought to explore individual experience in developing a mastery of daily activities and roles after a traumatic brain injury (TBI) with the objective of returning to work. METHOD: Eight 30-60-year-old men, employed at the time of injury, were each interviewed three times over a 6-month period. Ten to 21 months after the injuries, four participants had returned to work at least part time. Grounded theory was adapted for analyses. RESULTS: A single core category emerged: a desire for control: focusing on high-priority issues. Still, 2 years after injury, the participants were uncertain about their abilities with respect to what was expected of them at work. They felt they would do better as time progressed. CONCLUSIONS: The participants' uncertainty about their efficacy cast doubt on their beliefs in improving their skills, balancing daily activities and work. They wondered about the sustainability of their health and efficacy at work. Wanting to control their own improvement, the participants asked for counselling in strategies and techniques to help with their progress. This issue could be taken into account in follow-up rehabilitation programmes. Additionally, the workplace might be the ideal context in which to develop the structures and routines necessary to master life in general. IMPLICATIONS FOR REHABILITATION: Two years after injury, the participants remained uncertain about their abilities with respect to what was expected of them at work. The participants felt they would do better as time progressed. The participants, wanting to control their own improvement, sought counselling to help sort out their priorities and found it could contribute to help with their progress in finding a suitable balance between daily activities and work. A consequence of our main finding, in a multidisciplinary context, is that counselling in structures and routines with respect to work-related tasks should be considered to be an integral part of any rehabilitation programme after TBI.

Training in client-centeredness enhances occupational therapist documentation on goal setting and client participation in goal setting in the medical records of people with stroke.

OBJECTIVE: The aim of the present study was to compare client-centeredness as it was documented by the occupational therapists in the units randomized to the intervention clusters with documentation by occupational therapists in the control clusters. DESIGN: Comparison of medical records. SETTING: The study is conducted in a context of a randomized controlled trial in Sweden, with 16 post-stroke rehabilitation units cluster randomized to intervention or control group. SUBJECTS: Occupational therapist documentation in medical records of 279 clients with stroke. MAIN MEASURES: The medical records were reviewed for their level of client-centeredness using a protocol developed from the Stewart et al model. The occupational therapists in the intervention groups participated in a workshop training to enhance their client-centeredness. RESULTS: Occupational therapists with training in client-centeredness documented significantly more on goal setting (OR = 4.1; 95% CI, 1.87-8.81), on client participation in goal setting (OR=11.34; 95% CI, 5.97-21.57), on how the goals could be reached (OR=2.8; 95% CI, 1.7-4.62), on client participation in how goals could be reached (OR=4.56; 95% CI, 2.73-7.64), on the follow-up on goals (OR=5.77; 95% CI, 2.78-11-98) and on client participation in follow-up on goals (OR=7.44, 95% CI, 4.33-12.8). This association remained after adjustment for healthcare setting, client socio-demographic variables, and stroke severity. CONCLUSION: Documentation of goal setting and client participation in goal setting can be influenced by training.

Client-centred ADL intervention after stroke: Significant others' experiences.

BACKGROUND: Client-centredness is a prominent contemporary concept in rehabilitation. However, there is a lack of knowledge on if and how a client-centred rehabilitation approach is incorporated in the everyday life of significant others of people who receive such rehabilitation. OBJECTIVE: Explore and describe if and how a client-centred ADL intervention (CADL) was integrated in the everyday lives of significant others of people with stroke. MATERIALS AND METHODS: Qualitative longitudinal design, with a grounded theory approach. Seven significant others, who cohabited with persons receiving a CADL intervention, were interviewed during the first year. FINDINGS: One core category was identified: "Taking responsibility and achieving balance with respect to self-esteem in order to get on with everyday life". The integration of the CADL was a process. A key aspect was that as the person with stroke acted upon his/her own desired activity goals the significant others were encouraged to act on their own needs. CONCLUSIONS: Enablement is important also for the significant others of people with stroke. One way of enabling significant others to maintain an active lifestyle and find respite in everyday life might be to enable people with stroke to formulate and act upon their desired activity goals.

The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1†year after stroke: a mixed methods study.

OBJECTIVES: The aim of the study was to explore the associations between the dyad's (person with stroke and informal caregiver) perception of the person with stroke's rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1 year after stroke. DESIGN: A mixed methods design was used combining quantitative and qualitative data and analyses. SETTING: Data were mainly collected in the participants' homes. OUTCOME MEASURES: Data were collected through established instruments and open-ended interviews. The dyad's perceptions of the person with stroke's rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware's taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. PARTICIPANTS: 86 persons with stroke (mean age 73 years, 38% women) and their caregivers (mean age 65 years, 40% women). RESULTS: Fifty-two per cent of the dyads perceived that the person with stroke's need for rehabilitation was met 12 months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. CONCLUSIONS: Rehabilitation interventions need to focus on supporting the dyads' process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation.

Changes in the impact of stroke between 3 and 12 months post-stroke, assessed with the Stroke Impact Scale.

OBJECTIVE: To examine data collected using the Stroke Impact Scale 3.0 (SIS) at 3 and 12 months post-stroke, and to explore any clinically meaningful changes in everyday life in relation to age, gender and stroke severity. DESIGN: Prospective longitudinal study. METHODS: A total of 204 persons were assessed using the SIS at 3 and 12 months after onset of stroke. Changes in domain scores were calculated over time and in relation to age, gender and stroke severity. RESULTS: The Strength, Hand Function and Participation domains had the highest perceived impact at 3 and 12 months, indicating problems in everyday life. Stroke recovery was perceived to be significantly higher at 12 than at 3 months irrespective of stroke severity, age or gender. The impact on the Strength and Emotion domains was significantly lower at 12 months than at 3 months. Most clinically meaningful changes, both positive and negative (± 15 points), were seen in the Participation domain and in Stroke recovery. Few changes were associated with age, gender or stroke severity. CONCLUSION: Both positive and negative clinically meaningful changes related to impact of stroke were found between 3 and 12 months post-stroke. Therefore it is important to pay close attention to patients' perceptions of their everyday life situation during rehabilitation and at discharge.