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.
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.
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.
Abstract 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.
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.
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.
Abstract 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 incidence of stroke among working-age adults is increasing in high-income countries. Approximately 40–50% of those having stroke in working ages do not return to work. Work plays an essential role in peoples’ lives and has positive health effects for people with or without disabilities. Not participating in working life has social and economic consequences and a negative impact on the quality of life. The process of returning to work for persons with disabilities is complex, and there are challenges due to legal, administrative, social, political, and cultural systems. Vocational rehabilitation involves many actors whose objective is to enable people with health problems to return to and remain in work. In a systematic review of the evidence base for return-to-work interventions for people with acquired brain injuries, there was strong evidence that workplace and work-directed interventions were associated with successful return to work. These entail early contact with workplace, tailoring work tasks, work-place adjustments, involvement of the employer as well as co-workers, and work practice. The use of case coordinators in vocational rehabilitation has proven to be effective. The content of three vocational rehabilitation programs using coordinators is presented. The experience of returning to work after stroke has been described with mixed feelings, including both trust and fear for the future work situation. Other important factors to consider in return-to-work programs for people with stroke are to have an open communication about the present work ability and to involve stakeholders i.e., the person with stroke, the employer, and coworkers.
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.
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.
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.
As part of efforts to increase innovation, artistic interventions with similarities to design thinking interventions have become increasingly popular. An important aspect of an artistic intervention is the facilitation or bridging process that links the organization, the artist or designer, and the target group. This process is at the core of the relationship, essential for avoiding frustrations and frictions that easily emerge in the communication processes between the different worlds or logics of the artist (artistic logic) and the target� group� (economic� logic),� and� for� ensuring� that� the� “tools� gained”� continue to be used in the organization after the artist has left. We present a study of three Swedish facilitating organizations with different processes, SVID (www.svid.se). TILLT (www.tillt.se), and SKISS (www.konstframjandet.se/projekt/skiss). Our research included interviews with representatives of the different organizations. We discovered that while the processes are similar in their intentions and ways of dealing with issues that arose within the target group, they differ foremost in the time and conditions offered to the artists/designers. We discuss the resources required for the different approaches and reflect on implications for new producers of artistic innovations
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.
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.
This chapter offers a journey across the territory of new research on artistic interventions in organizations. It discusses the contours of the field, its development and its dominant discourses. The chapter presents the absence of some critical discourses and outlines some challenges that encourage bold academics, artists, managers, intermediaries and policymakers to take up to reignite a revolutionary spirit in the development of research, theory and practice of artistic interventions in organizations. Lotte Darso presents a map of the development of artistic interventions a framework for practice. Ariane Berthoin Antal and Anke Straub presents extensive review of empirical studies documents the great number and variety of artistic interventions in organizations in Europe, and provides a realistic assessment of the different kinds of value such initiatives have generated. Currently researchers focus on how differences and difficulties between the world of the arts and the world of organizations are overcome in order to improve the existing order of things.
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.
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.
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 12months 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 12months. 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 12months. 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.