Developing and testing the feasibility of a new internet-based intervention-A case study of people with stroke and occupational therapists.

INTRODUCTION: Internet-based interventions are called for within rehabilitation to meet the limited access to support for self-management after stroke. Therefore, a new intervention program, "Strategies for Empowering activities in Everyday life" (SEE) was developed. The aim of this study was to explore and describe how clients with stroke and their occupational therapists experienced the SEE intervention process and whether SEE has the potential to promote an active everyday life. METHODS: A qualitative descriptive case study was designed. Four people with stroke (two of each sex, mean age 66,5 years) and their two occupational therapists (one of each sex) were included. A mix of data collection methods as interviews, assessments, registration forms and fieldnotes was used to uncover the participants' experiences and potential changes. Data were analysed with pattern matching. FINDINGS: The analysed data formed three categories: "Not being able to take on the internet-based intervention", "Being facilitated in the change process of everyday life through the internet-based intervention", and "Providing a new internet-based intervention is a transition from ordinary practice". These categories included two to four subcategories that reflected aspects of SEE feasibility and acceptability with a focus on content and delivery. CONCLUSION: The first test of the intervention indicates that the content and delivery of SEE can be feasible and acceptable both for clients and occupational therapists. The findings suggest that SEE has the potential to support clients' self-reflections and their adoption of strategies that influence engagement in daily activities and satisfaction with life in various ways. Further research with large-scale studies is needed.

Self-initiated management strategies in digitalized work and everyday life - experiences of people with cognitive difficulties due to neurological disorders.

Background: Digitalized work life can increase cognitive demands and influence people's everyday life. This can be challenging for people with cognitive difficulties, yet there is scarce knowledge of how they manage these. It is essential to learn how self-initiated management strategies can be a resource to support sustainable work and everyday life.Aim: To describe how people with cognitive difficulties due to neurological disorders experience their use of self-initiated strategies to manage digitalized work and other activities of everyday life.Material and Methods: Eleven employees in digital work with cognitive difficulties and neurological disorders participated in qualitative interviews supported by a dialogue support tool. Data were analyzed using content analysis.Results: A complexity of strategies was used to manage digital work and other activities. Based on how strategies were applied, three different profiles were found. These reflected efforts to manage situations in everyday life and how these influenced strategies applied and their importance.Conclusion: This knowledge can support people with cognitive difficulties and professionals to become aware of the potential of strategies and acknowledge a person's own management resources. Reflections on how to manage situations can give perspectives on prevention or vocational rehabilitation to facilitate a sustainable work life.

The "Managing Fatigue" programme - Experiences shared by MS participants.

BACKGROUND: The "Managing Fatigue" (MF) programme can help people living with Multiple sclerosis (MS) manage fatigue in their everyday lives. The programme has been proven feasible with Swedish occupational therapists, but there is a lack of knowledge of how MS participants experience the programme, and what they learned from participating in the programme. AIM: To describe how Swedish MS participants experience the content and structure of the Swedish MF programme, as well as what they learned from participating in the programme. MATERIAL AND METHODS: Qualitative interviews were performed with nine MS participants, and data were analysed according to direct content analysis. RESULTS: Participants experienced programme material was relevant, and they valued the structured sessions that utilised different teaching forms. Participants described the group format and the experienced course leader nurtured their learning process. They learned occupational skills to save energy, to re-value daily occupations, and initiated a process of change, but individual support is needed after programme completion. CONCLUSION AND SIGNIFICANCE: Findings support programme feasibility among MS participants, and show the importance of being able to practice skills to handle fatigue in everyday life. Future studies should consider adding outcome measures focussing on engagement in occupations when evaluating programme effectiveness.

Stroke survivors' preferences regarding study participation in rehabilitation research.

BACKGROUND: To pursue high quality research, successful participant recruitment is essential, but recruitment rates are often low. This is specifically true in target populations with impairments, for instance, among stroke survivors. Previous studies focusing on recruitment have mainly relied on information from professionals, and there is therefore a need to contribute with new methodological insights to how potential rehabilitation research participants describe their interest and preferences to participate in research. The purpose of this study was to generate knowledge about stroke survivors' interest in participating in rehabilitation research, reasons for being interested or not, and preferred forms and foci of rehabilitation interventions. An additional aim was to describe preferences regarding survey administration modes and processes for recruitment to studies. METHOD: This cross-sectional study recruited Swedish residents who had sustained a stroke, initially by using advertisement on the National Stroke Association's website, flyers posted at local occupational and physical therapy offices and at local stroke/senior organization meetings. Secondly, participants were recruited through a local stroke register. The survey, administered either in a paper form returned by postal mail; online or as a phone interview with 128 stroke survivors. RESULTS: Most of the participants were interested in participating in rehabilitation research, particularly younger persons (p = 0.001) and those closer to stroke onset (p = 0.047). Contribution to research, possibility to try new rehabilitation interventions and meeting others in the same situation were reasons that attracted an interest to participate. Other important aspects were related to motivation, individual needs, as well as how skilled the people who provided the intervention were. Participants preferred group-based programs, and programs focusing on regaining lost functions were highly requested. A majority wanted to be contacted through postal mail (70%) and most of them (90%) used the paper form to respond to the survey. CONCLUSIONS: A range of personal and external aspects, including challenges related to digitized administration modes, should be considered to achieve high participation rates in rehabilitation research targeting stroke survivors. The importance of addressing individual needs and prerequisites in an individualized manner should not be underestimated and might be a useful strategy to recruitment success.

Participation in social and leisure activities while re-constructing the self: understanding strategies used by stroke survivors from a long-term perspective.

PURPOSE: To further understand social and leisure (SL) participation after stroke and how it can be supported in a long-term perspective, this study aims to deepen the understanding of strategies used by long-term stroke survivors in relation to SL activities. MATERIALS AND METHODS: The study has a qualitative design, using a grounded theory approach, and is based on in-depth interviews with 10 persons who had a stroke 15 years ago and four of their family members. RESULTS: The findings comprise nine different strategies used by the participants. These had two overarching purposes; to protect and re-construct the post-stroke self and to enable participation in valued SL activities despite challenges. The findings are summarized in one overarching theme: "Employing different strategies to balance costs and rewards of engagement in social and leisure activities". CONCLUSIONS: Strategies for SL participation involves balancing different priorities in life and can change over time as they are continuously influenced by various personal and environmental conditions. These findings contribute to an improved understanding of why and how people hold on to activities, give up activities and find new activities after a stroke. It also highlights the need for a long-term perspective on stroke rehabilitation and support.IMPLICATIONS FOR REHABILITATIONRe-engagement in social and leisure activities after stroke is a long-term process and various types of support may be needed during different stages of recovery and adaptation.Successful rehabilitation interventions build on an understanding of each individual's priorities, goals and strategies and how these may change or manifest over time.Special attention should be given to the individual's perception of costs and benefits in relation to engagement in activities, and the role that it has for the person's identity.By providing knowledge and supporting the use of adequate coping strategies, rehabilitation professionals can help patients find a new and accepted post-stroke identity.

Optimising the development of sustainable internet-based occupational therapy interventions: Important key actions and perspectives to consider.

BACKGROUND: By examining the health needs of the general population and utilising the potential of digitalisation as a driving force, new internet-based services need to be developed in occupational therapy. However, existing guidelines for the development of complex interventions provide scant information on how to develop internet-based interventions. AIM: The aim of this paper is to share experiences and illustrate important key actions and new perspectives to consider during the innovation process of developing and designing an internet-based occupational therapy intervention. METHOD AND MATERIALS: International guidelines for intervention development was reviewed to add important perspectives in the innovation process. RESULTS: The illustration focuses on five key actions in the development phase to highlight new perspectives and questions important to consider when designing new internet-based occupational therapy interventions. CONCLUSION: The new perspectives can complement existing guidelines to enhance the development of more effective and sustainable internet-based interventions. SIGNIFICANCE: The illustration provided has potential to improve the sustainability in innovation processes of new internet-based occupational therapy interventions.

Work and everyday life in a digitalized time: Experiences of people with subjective cognitive difficulties related to neurological disorders.

INTRODUCTION: Digitalization has changed working life and increased cognitive demands on employees in general. Nevertheless, the consequences for employees with cognitive impairments and subjective cognitive difficulties are to a large extent unexplored. The aim of this study was to explore and describe how employees with subjective cognitive difficulties who are performing digital work tasks experience their vocational situation and how this situation influences their everyday life. METHODS: A qualitative, descriptive, multiple-case study was designed. Self-reports, assessments and qualitative interviews were used to collect data from the seven participants with neurological disorders. The data were analysed using pattern matching. FINDINGS: The analysed data formed four categories conceptualized as "Working to my full potential", "Working, but it is largely up to me", "Working at the expense of everyday life" and "Working without known difficulties", and these categories included one to four subcategories. CONCLUSION: Managing subjective cognitive difficulties in vocational situations and everyday life was challenging in a digitalized working life for participants with neurological disorders. To provide equal access to preventive measures and rehabilitation and a sustainable working life, it is important to investigate the influence of subjective cognitive difficulties systematically on work, everyday life and management strategies in people with neurological disorders in digitalized work.

Strategies for Empowering activities in Everyday life (SEE 1.0): study protocol for a feasibility study of an Internet-based occupational therapy intervention for people with stroke.

BACKGROUND: Rehabilitation after stroke seldom focuses on needs related to an active everyday life and the process of change that people must undergo to adapt to an altered capacity and life situation. In particular, occupational therapy in the late phase needs to support clients in adopting sustainable self-initiated management strategies to regain daily activities and an active everyday life. To improve access to rehabilitation, the use of digital solutions has been suggested. This study aims to evaluate the feasibility of the Internet-based occupational therapy intervention "Strategies for Empowering activities in Everyday life" (SEE, version 1.0). We will investigate the feasibility of the intervention process in terms of acceptability and adherence as well as the most suitable outcome measures to evaluate SEE and improve the knowledge about the potential changes and outcomes of SEE for clients with stroke. METHODS: This feasibility study is based on a pretest posttest design without a control group. Quantitative and qualitative data will be collected from clients and staff concurrently embedded in a mixed-method design during the entire study. DISCUSSION: The project is a first test of a novel Internet-based occupational therapy intervention, and the research will contribute to the continued development and evaluation of the SEE programme. SEE can provide people with strategies in daily activities that can support them to live an active everyday life despite changed capacity and to improve access to rehabilitation interventions. TRIAL REGISTRATION: NCT04588116 . Name of the registry: Strategies Empowering Activities in Everyday Life (SEE 1.0). A Web-based Occupational Therapy Intervention. URL of trial registry record. Date of registry: Trial first posted: October 19, 2020; first submitted: October 2, 2020.

Assessing environmental barriers by means of the swedish craig hospital inventory of environmental factors among people post-stroke.

BACKGROUND: When occupational therapists address environmental barriers to occupational engagement, some barriers might not be possible to reduce for single individuals, because decisions have to be taken at community or societal level, for example changes in public transport. Investigating environmental barriers by means of the Swedish Craig Hospital Inventory of Environmental Factors (CHIEF-S) may increase our understanding of the environmental impact on occupation engagement and the methodological challenges to assess environmental barriers. AIMS: To investigate and describe the magnitude of encountered environmental barriers in a group of people post-stroke and to assess psychometric properties of the CHIEF-S. MATERIAL AND METHODS: In total, 34 participants, who had sustained a stroke in Sweden were recruited. RESULTS: The participants reported in average 2,7 barriers and the total frequency-magnitude score of barriers (CHIEF-S score) was 0.45. The Cronbach's α for the total CHIEF-S was 0.80 and the analysis of test-retest reliability revealed ICC = 0.86. The entire instrument demonstrated better psychometric properties than the single sub-scales. CONCLUSION: In this study, the frequency-magnitude of environmental barriers encountered by people post-stroke are reported at a group level and adds information to the cumulative knowledge generation on perceived environmental barriers in the society. However, to inform which interventions are needed at a more detailed level, other data collection methods have to be added.

The "Managing Fatigue" programme for people with multiple sclerosis - acceptance and feasibility with Swedish occupational therapists.

Background: Fatigue is common among people with multiple sclerosis (MS), and significantly influences engagement in occupations. The Managing Fatigue (MF) programme is an evidence-based occupational therapy group-based intervention, utilising self-management science that provides people with tools to manage fatigue. Although the national MS-guidelines in Sweden cite this as best practice, a Swedish version is not available.Aim: To translate and investigate the feasibility of a Swedish MF programme delivered by occupational therapists working with MS clients in Sweden.Material and methods: We used a mixed-methods design. Eight recruited occupational therapists, participated in a workshop prior to delivering the MF programme. Following programme delivery, they completed a questionnaire and participated in focus group interviews.Results: Each therapist conducted one programme with 5-9 MS clients. Overall, therapists were satisfied with programme content, and delivery was followed. Minor improvements were suggested, specifically in relation to how cognitive fatigue can be managed. Therapists acknowledged challenges moving from "expert" to supporting self-management.Conclusion: The MF programme is feasible in Sweden, and its client-centred and occupation focus is consistent with therapists' scope of practice. In the future, acceptability and satisfaction from the perspectives of MS participants should be examined. Larger, more robust intervention studies evaluating effectiveness are also warranted.

Living and ageing with stroke: an exploration of conditions influencing participation in social and leisure activities over 15 years.

OBJECTIVE: To explore conditions influencing long-term participation in social and leisure activities among people who have had a stroke. METHODS: This study had a qualitative design, using a grounded theory methodology. Data collection was based on in-depth interviews performed 15 years after a first-ever stroke with 10 persons recruited from a population-based stroke cohort in Sweden. The study also included four family members. FINDINGS: Over time, the stroke meant a changed but gradually normalised life situation. Participation in social and leisure activities was influenced by several transacting personal and contextual conditions changing with time and ageing. Central conditions that emerged from the analysis included personal characteristics, having social and supportive networks, being dependent on others, having access to valued activities and contexts, being motivated to participate, and perceiving sufficient capacity to participate. CONCLUSIONS: Long-term participation after stroke is possible despite impairments, but is influenced by a range of personal and environmental conditions. Stroke rehabilitation should be based on an awareness of this influence and address conditions that change with time and ageing during different phases after stroke.

Facilitators for travelling with local public transport among people with mild cognitive limitations after stroke.

INTRODUCTION: Previous research of how people with stroke manage public transport has mainly focused on barriers due to physical limitations whereas the influence of cognitive limitations is scarce. There is also a lack of knowledge of facilitators that can help to overcome these barriers. The aim of this study was to describe facilitators for travelling with public transport, e.g. local buses, among people with mild cognitive limitations after stroke. METHODS: A multiple case study research design was used, where quantitative and qualitative data were utilized, and analysed according to a mixed methods design. FINDINGS: The case descriptions reveal how people with mild cognitive limitations after stroke manage their trips but constantly have to be prepared to solve problems to unexpected events. Personal characteristics and other individual strategies together with support and solutions from society were important facilitators for travelling with bus. DISCUSSION: This study takes a new approach by specifically describing facilitators for travelling with public transport among people with mild cognitive limitations after stroke. To facilitate participation in society for this particular traveller group, occupational therapists have an important role when new technology and interventions that target bus travels, and other modes of transport are developed.

BUS TRIPS-A Self-Management Program for People with Cognitive Impairments after Stroke.

Stroke is a major cause of disability worldwide and different types of impairments can affect the individual's ability to manage everyday activities such as travel that is essential for participation in society. The purpose of this study was to investigate the feasibility of a new self-management intervention (BUS TRIPS) focusing on travelling by bus, and potential contributions to an improved ability to travel by bus for people with cognitive impairments after stroke. This is a pilot study of five individuals, utilizing a multiple case study design with a mixed methods approach. Assessments (Stroke Impact Scale, General Self-Efficacy Scale and Life Satisfaction Scale-11, Item 1) were performed before, two weeks after, and three months after the program. The data collection also comprised reflection notes from the group leaders (an occupational therapist and a physiotherapist), a semi-structured group interview and an individual phone survey. The feasibility of the intervention was presented in four sub-categories: (1) appreciated group format despite too short sessions; (2) the importance of skilled leaders and motivated participants; (3) session material adequate but needs minor revision to fit the target group; and (4) homework is valuable but reflective group discussions must be supported. The narratives of each case showed that all participants made some progress related to travelling by bus, but the overall positive results could not be verified by all of the quantitative assessments. We conclude that the BUS TRIPS intervention is feasible and can potentially contribute to an improved ability to travel by bus for the target group. Future studies is called for, and should focus on recruitment challenges, to clarify assessments that would be suitable to use in larger scale clinical trials and during subsequent implementation in clinical practice.

Experiences of using powered wheelchair or powered scooter and accessibility in housings.

OBJECTIVE: To describe powered wheelchair (PW) and powered scooter (PS) users' experiences of accessibility and housing adaptions in their homes. METHOD: A qualitative research approach with focus group methodology was used. Four focus groups were created, with men and women as well as PW and PS users in different groups. Applying a descriptive approach, data were analysed according to the principles described by Krueger and Casey. FINDINGS: With a specific focus on how PW and PS and housing adaptations operate together, the findings of this paper formed two categories: "Possibility of receiving housing adaptations according to individual needs" and "Importance of receiving the correct type of PW and PS in relation to individual needs". CONCLUSION: It is vital to acknowledge the characteristics and requirements of PW and PS as well as housing adaptations in order to optimize the use of such devices in the home, as a prerequisite for independence, activity and participation. The provision of PW and PS and housing adaptations should be considered and planned simultaneously, applying an explicitly user-centred perspective. Additionally, the collaboration between the different actors involved should be improved.

Men's and women's perspectives on using a powered mobility device: benefits and societal challenges.

OBJECTIVE: To describe how men and women experience their use of powered wheelchairs (PW) and powered scooters (PS) in everyday occupations, in the home and in society at large. METHODS: A qualitative research approach with focus-group methodology was used. Four focus groups were created, with men and women as well as PW and PS users in different groups. Applying a descriptive approach, data were analysed according to the principles described by Krueger. FINDINGS: Three categories emerged and revealed that even though use of PW and PS increased independence and enabled everyday occupations, participants struggled to be independent powered mobility device (PMD) users. They experienced many accessibility problems in dwellings and in society, described similarly by users of PW and PS. Men and women experienced their use of (PMD) differently, especially in relation to the service delivery process. CONCLUSIONS: The study contributes with new knowledge on accessibility for PW and PS users and related service delivery processes, stating that gender differences regarding provision and training must be taken into account. Occupational therapists can contribute to an enhanced understanding of PMD users' challenges in person-environment-occupation transactions in the home and society, and thereby promote occupational justice for PMD users.

Occupations that people with late effects of polio perceive difficult to perform.

The aims of this study were to describe which occupations that people with late effects of polio perceive difficult to perform, which occupational area the occupations were related to and their level of complexity. The aims were also to describe their own perception of the importance, performance and satisfaction with these occupations. Sixty-two participants (mean age 61 years) were assessed with the Canadian Occupational Performance Measure. A total of 431 occupations were reported (43% self-care, 32% productivity and 25% leisure). Two subcategories, household management (27 %) and functional mobility (23 %), represented half of all the reported occupations. Ratings for prioritized occupations (N = 300) were high for importance and generally low for performance and satisfaction. A wide variety of occupations were reported, related to both occupational areas and different levels of complexity within an occupational area. The results underscore the importance of using assessment tools that can capture both the variety and complexity of occupations. By obtaining more detailed information about occupations that people with late effects of polio perceive difficult to perform, this will enable occupational therapists to offer targeted interventions that can facilitate engagement in meaningful and purposeful occupations. A larger and more heterogeneous sample may enable the results to be generalized to more people with late effects of polio. Future studies should focus on methods that can facilitate engagement in meaningful and purposeful occupations for people with late effects of polio.