POSITIVE: experiences of an intervention aiming for reversing and preventing frailty using a home monitoring and communication platform within primary health care.

BACKGROUND: Frailty is increasing worldwide as the population ages. Physical activity is one component that has been shown to hinder and even reverse the process. The POSITIVE system (i.e., maintaining and imPrOving the intrinSIc capaciTy Involving primary care and caregiVErs) is a prevention program that consists of home-monitoring equipment and a communication platform to support the initial treatment of frailty symptoms in primary health care. The participants, older aged (+ 70) frail persons and those at risk for frailty, took part in the program that promoted physical activity at home for six months. The aim was to explore and describe older persons' experiences of participating in a new prevention program using the POSITIVE system including technological tools intended to prevent the development of frailty. METHODS: Nine interviews were conducted about experiences of participating in an intervention including use of technological tools to support physical activity. Qualitative content analysis was applied. RESULTS: Two themes revealed: (1) Perceptions of being old are seldom positive, and (2) A rewarding and fruitful participation in the project with suggestions for improvement. Becoming older was related to physical pain and tiredness reducing the performance of former meaningful activities as well as an increase in mental stress. There was also a tendency to postpone the start of everyday activities, and in general, fewer activities were planned for one day than at younger ages. Participating in a physical activity intervention, including the use of technical tools, was considered meaningful and added motivation for engaging in other physical activities, this despite some difficulties with technical tools provided by the program. The contact with health care and the research team was appreciated. In addition, contact with other participants was requested and reported to be highly valued if added to the intervention, which could have been an expression of loneliness. CONCLUSION: Participation in a prevention program motivated activities and social interaction. Adding opportunities for participants to meet each other is suggested for improving the intervention in terms of increasing the social dimensions. Our findings conclude that despite difficulties with handling the technical tools for the home-monitoring and communication platform, participation in the POSITIVE intervention was in general a positive experience.

Cross-cultural adaption and inter-rater reliability of the Swedish version of the updated clinical frailty scale 2.0.

BACKGROUND: Worldwide, there is a large and growing group of older adults. Frailty is known as an important discriminatory factor for poor outcomes. The Clinical Frailty Scale (CFS) has become a frequently used frailty instrument in different clinical settings and health care sectors, and it has shown good predictive validity. The aims of this study were to describe and validate the translation and cultural adaptation of the CFS into Swedish (CFS-SWE), and to test the inter-rater reliability (IRR) for registered nurses using the CFS-SWE. METHODS: An observational study design was employed. The ISPOR principles were used for the translation, linguistic validation and cultural adaptation of the scale. To test the IRR, 12 participants were asked to rate 10 clinical case vignettes using the CFS-SWE. The IRR was assessed using intraclass correlation and Krippendorff's alpha agreement coefficient test. RESULTS: The Clinical Frailty Scale was translated and culturally adapted into Swedish and is presented in its final form. The IRR for all raters, measured by an intraclass correlation test, resulted in an absolute agreement value among the raters of 0.969 (95% CI: 0.929-0.991) and a consistency value of 0.979 (95% CI: 0.953-0.994), which indicates excellent reliability. Krippendorff's alpha agreement coefficient for all raters was 0.969 (95% CI: 0.917-0.988), indicating near-perfect agreement. The sensitivity of the reliability was examined by separately testing the IRR of the group of specialised registered nurses and non-specialised registered nurses respectively, with consistent and similar results. CONCLUSION: The Clinical Frailty Scale was translated, linguistically validated and culturally adapted into Swedish following a well-established standard technique. The IRR was excellent, judged by two established, separately used, reliability tests. The reliability test results did not differ between non-specialised and specialised registered nurses. However, the use of case vignettes might reduce the generalisability of the reliability findings to real-life settings. The CFS has the potential to be a common reference tool, especially when older adults are treated and rehabilitated in different care sectors.

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.

ASSIST: a reablement program for older adults in Sweden - a feasibility study.

BACKGROUND: Western countries emphasise the provision of assistive home care by implementing reablement services. Reablement services are offered to a limited degree in Sweden, and systematic research regarding outcomes and how reablement can be tailored to maximize benefits for older adults has been lacking. This study aimed to evaluate the feasibility of a novel reablement program (ASSIST 1.0) regarding study design and outcome measures, as well as fidelity, adherence, and acceptability of the program in a Swedish context. METHOD: A non-randomised, quasi-experimental, mixed-method, pre/post-test design was applied with an intervention group receiving ASSIST 1.0 (n = 7) and a control group receiving regular home care (n = 10). ASSIST 1.0 was developed to empower older adults to increase their perceived performance and satisfaction of performing activities in everyday life as well as increase their perceived health, self-efficacy, and well-being. ASSIST 1.0 was founded on the concept of reablement and included three components: i) goal setting with The Canadian Occupational Performance Measure (COPM), ii) provided support to home care staff to enhance their provision of reablement, and iii) explored the incorporation and use of an information- and communication technology (ICT) to facilitate information transfer. RESULTS: Using COPM for goal setting with older adults and providing support to the staff via workshops were valuable components in the delivery of ASSIST 1.0. The ICT product encountered several challenges and could not be evaluated. COPM and EQ-5D were deemed the most important instruments. Organisational and political barriers affected the feasibility. Although, the fidelity and adherence were complied the staff perceived the program to be acceptable. CONCLUSION: The ASSIST 1.0 program was feasible in regard of study design, delivering the intervention, and evaluating instruments that detected a change. A logical progression would be to conduct a full-scale trial. In addition, a usability study to evaluate the technological component is also recommended. With minor improvements, the ASSIST 1.0 program has the potential to contribute to the development of a home care organisation that could enhance older adults possibility to age in place at home. TRIAL REGISTRATION NUMBER: NCT03505619.

Individual and organisational factors in the psychosocial work environment are associated with home care staffs' job strain: a Swedish cross-sectional study.

BACKGROUND: Home care staff (HCS) provide essential service to enable older adults to age in place. However, unreasonable demands in the work environment to deliver a safe, effective service with high quality has a negative impact on the individual employee's well-being and the care provided to the older adults. The psychosocial work environment is associated with employees´ well-being, although, knowledge regarding which individual and organisational factors that contribute to job strain for HCS is limited. These factors need to be identified to develop targeted interventions and create sustainable work situations for HCS. This study aimed to explore how HCS´s perceived job strain is associated with, and to what extent can be explained by, individual and organisational factors of the psychosocial work environment and psychosomatic health. METHOD: An explorative cross-sectional questionnaire survey design was used in a large Swedish county. Five home care agencies with a total of 481 HCS were asked to respond to a questionnaire regarding their perceived level of job strain (Strain in Dementia Care Scale), psychosocial work environment (QPSNordic34+), and psychosomatic health (Satisfaction with Work Questionnaire). Multiple linear regression (MLR) analyses were conducted to explore the association between job strain and individual and organisational factors. RESULTS: In total, 226 (46%) HCS responded to the questionnaire. Both individual and organisational factors were significant predictors of job strain and explained a variance ranging between 39 to 51% (p = 0.001). The organisational factor job demand and the individual factor feeling worried and restless was most frequently represented in these MRL models. A higher job strain was also associated with adverse outcomes regarding leadership, organisational culture and climate, and control at work. CONCLUSION: This study indicates that there is an intertwined complexity of individual and organisational factors that are associated with the HCS´s perception of job strain. Implementation of new multidimensional work strategies, such as a reablement approach, could support the development of efficient strategies for HCS and reduce the level of job strain. Policy changes for the provision of home care are also needed to support the development of a sustainable and healthy psychosocial work environment.

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".

What's in it for me? A process evaluation of the implementation of a mobile phone-supported intervention after stroke in Uganda.

BACKGROUND: The prevalence of stroke in Uganda is increasing. In stroke rehabilitation, information and communication technology has been shown to have potential in improving service delivery in high-income countries but there is limited knowledge of its use and impact in low-income countries. The aim of the study was to evaluate the implementation process of a mobile phone-supported family-centred rehabilitation intervention and to gain knowledge on the mechanisms of impact as well as the contextual factors that might have affected the implementation process and its outcome. METHOD: This was a single-case study design using the integrated Promoting Action on Research Implementation in Health Services framework and the Medical Research Council guidance as frameworks. Quantitative process data was derived from 14 log books used by occupational therapists during the implementation. Qualitative semi-structured interviews were conducted with 12 implementers in different professions, 12 months into the implementation, in order to obtain the primary data. Secondary data was derived from six semi-structured interviews conducted directly after pre-intervention workshops and 6 months later. The framework method was used in the data analysis. RESULTS: In 11 out of 14 cases, the clients were compliant with the intervention. Yet, challenges such as technical problems were reported. The target of conducting 16 phone calls for each client was achieved to 74%. Eight categories emerged from the qualitative analysis of the interviews including: 1) perceptions on facilitation, 2) using scientific and experience-based knowledge, 3) tailoring the intervention, 4) supportive working culture, 5) barriers to the service delivery, 6) implementers' interaction with the intervention, 7) perceptions on motivations and values, and 8) improving the model and enabling sustainability. Mechanisms contributing to the implementation of the intervention included engaged facilitators and motivated participants. Challenges in the client recruitment and poor information dissemination were some of the mechanisms impeding the implementation. CONCLUSIONS: The intervention was partially delivered in accordance with the logic model for the project, where the implementation process was influenced by several barriers in the context such as technical setbacks. However, there were also several mediators in the process driving the project forward, including strong facilitation and motivated participants.

Five-year follow-up of a cluster-randomized controlled trial of a client-centred activities of daily living intervention for people with stroke.

OBJECTIVE:: To compare five-year outcomes and changes over time of a client-centred activities of daily living (ADL) intervention versus usual ADL interventions for people with stroke and their significant others. DESIGN:: Five-year follow-up of a cluster-randomized controlled trial where a client-centred ADL intervention ( n = 129) or usual ADL interventions ( n = 151) were delivered to people with stroke. SETTING:: Multicentre study including 16 inpatient or home-based rehabilitation units. PARTICIPANTS:: People with stroke and significant others. INTERVENTION:: The client-centred ADL intervention aimed at enabling agency in daily activities and participation in everyday life and at reducing caregiver burden. MAIN MEASURES:: For people with stroke, perceived participation (Stroke Impact Scale), independence in ADL, life satisfaction, and use of formal/informal care were measured. For significant others, caregiver burden, life satisfaction, and mood (Hospital Anxiety and Depression Scale) were assessed. RESULTS:: Five years post-intervention, data were collected from 145 people with stroke (intervention group: n = 71/control group: n = 74) and 75 significant others (intervention group: n = 36/control group: n = 39). For those with stroke, the Participation domain of the Stroke Impact Scale showed no group differences at year five (68.9 vs 75.4, P = 0.062) or in changes over time. At year five, the control group had better outcomes regarding Other help/supervision. Significant others in the control group were more likely to show signs of depression at year five (odds ratio = 22.3; P < 0.001). CONCLUSION:: The client-centred ADL intervention appears to render similar long-term effects as usual ADL interventions for people with stroke, but for significant others signs of depression might be reduced.

User evaluation of a novel SMS-based reminder system for supporting post-stroke rehabilitation.

BACKGROUND: According to WHO stroke is a growing societal challenge and the third leading cause of global disease-burden estimated using disability-adjusted life years. Rehabilitation after stroke is an area of mutual interest for health care in many countries. Within the health care sector there is a growing emphasis on ICT services to provide clients with easier access to information, self-evaluation, and self-management. ICT-supported care programs possible to use in clients' home environments are also recommended when there are long distances to the health care specialists. The aim of this study was to evaluate the technical usability of a SMS-based reminder system as well as user opinions when using such a system to assist clients to remember to perform daily rehabilitation activities, to rate their performance and to allow Occupational therapists (OT's) to track and follow-up clients' results over time. METHODS: Fifteen persons with stroke were invited to participate in the study and volunteered to receive daily SMS-based reminders regarding three activities to perform on a daily basis as well as answer daily SMS-based questions about their success rate during eight weeks. Clients, a number of family members, as well as OTs were interviewed to evaluate their opinions of using the reminder system. RESULTS: All clients were positive to the reminder system and felt that it helped them to regain their abilities. Their OTs agreed that the reminder and follow-up system was of benefit in the rehabilitation process. However, some technical and other issues were limiting the use of the system for some clients. The issues were mostly linked to the fact that the SMS system was based on a Swedish phone number, so that all messages needed to be sent internationally. CONCLUSION: In conclusion, it seems that this type of SMS-based reminder systems could be of good use in the rehabilitation process after stroke, even in low income counties where few clients have access to Internet or smart phones, and where access to healthcare services is limited. However, since the results are based on clients', OTs' and family members' expressed beliefs, we suggest that future research objectively investigate the intervention's beneficial effects on the clients' physical and cognitive health.

A feasibility study of a mobile phone supported family-centred ADL intervention, F@ce™, after stroke in Uganda.

BACKGROUND: There is a lack of evidence-based health services to reduce the impact of stroke in low-income countries at a personal, family or community level. The aim was to evaluate the feasibility of: i) a mobile phone supported family-centred intervention (F@ce™), and ii) the study design for evaluating the effects of the intervention on the perceived impact of stroke; perceived participation in everyday life; and self-efficacy in everyday activities amongst persons with stroke and their families in Uganda. METHODS: The study comprised a pre-post design with an intervention group (IG) receiving the F@ce™ and a control group (CG). The inclusion criteria's were: a) confirmed stroke diagnosis, b) access to and ability to use a mobile phone, c) ability to communicate in English and/or Luganda, d) > 18 years, e) residents in Kampala, and f) a Modified Rankin Scale level 2 to 4. The aim of the F@ceTM was to increase functioning in daily activities for persons living with the consequences of stroke, and participation in everyday life for persons with stroke and their families. The F@ce™ was an eight-week family-centred intervention, which entailed goal setting and problem-solving strategies, daily reminders and self-rated follow-ups of performance by short message service (SMS). Data were collected in the participants' home environment at baseline and after eight weeks. Data on acceptability of the F@ce™ and study procedures were collected by log-books and the responses of the SMS follow ups on the server. The primary outcomes were performance and satisfaction of valued daily activities in everyday life using the Canadian Occupational Performance Measure (COPM), self-efficacy in performance of activities in daily life. RESULTS: The IG comprised n = 13 and the CG n = 15. There were differences between the IG and CG in changes between baseline and follow-up in the primary outcomes COPM (performance component) and self-efficacy in favour of F@ce™. Overall with minor modifications the intervention and the study design were feasible for all participants involved. CONCLUSION: The results support the need for further research to rigorously evaluate the effects of F@ce™ since the intervention appears to be feasible for persons with stroke and their family members.

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.

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.

Phronesis: Recognising a neglected dimension of knowledge within occupational therapy research.

BACKGROUND: Phronesis is a way of knowing, implying wisdom, experiences, and reflections that guide our judgements. Phronesis, important for learning, is a neglected form of knowledge when applied to research. AIM: To examine how phronesis is conceptualised and practiced in three research projects. METHOD: Data from eight interviews with researchers involved in three research projects was generated. The interview material was analysed. A theoretical matrix of contemporary understanding of phronesis was applied to the material. RESULT: Examples of phronesis from three research projects in occupational therapy are presented according to categories of contemporary phronesis; acknowledging embodiment, embracing humility, using perceptiveness, and practicing reflexivity. SIGNIFICANCE: This unique approach of analysing research projects contributes to the understanding of phronesis and its implications for research, providing valuable insights into the researchers' praxis in their respective projects. CONCLUSION: There is a need for a greater recognition of phronesis as a dimension of knowledge within all types of research, and within the discipline. By not recognising phronesis as a legitimate form of knowledge, the discipline perpetuates a superiority of knowledge from episteme that dominates our ways of learning about the world around us and where the type of knowledge gleaned from phronesis is consequently marginalised.

Information and communication technology in home-based rehabilitation - a discussion of possibilities and challenges.

Background: Information and communication technology (ICT) has been proven to have effect in terms of providing alternative ways to deliver rehabilitation services. The intention with this paper is to serve as a foundation for discussions regarding the future development, design, and delivery of home-based rehabilitation, including ICT.Aim: To reflect on and discuss the possibilities and challenges of using ICT in home-based rehabilitation services.Method and material: We use experiences and results from various projects to reflect on and discuss possibilities and challenges related to the use of ICT in home-based rehabilitation.Findings and discussion: We exemplify how ICT present new possibilities that can increase the quality of the rehabilitation process and improve access to services. We reflect on some challenges in the use of ICT, related to non-user-friendly solutions, to the specific rehabilitation situation, and a lack of technical support. At an organisational level, readiness to use ICT can impact the extent to which new solutions are integrated into practice.Conclusion: We emphasise that ICT has the potential to develop and improve service delivery and contribute to increased quality and accessibility of home-based rehabilitation.

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.

In search of self after stroke: a longitudinal qualitative study in the context of client-centred rehabilitation.

PURPOSE: The aim was to illuminate the experiences of stroke survivors returning to everyday life in the year following stroke, in the context of client-centred rehabilitation. METHODS: Four men who participated in a client-centred rehabilitation program were followed during the first year after stroke. Semi-structured interviews were conducted, allbut the first in the participants' home. The data were analysed using a grounded theory approach. RESULTS: The results revealed a process with the overarching core category; The "new" self becomes reality through challenging everyday experiences, and five main categories driving the process: 1) Striving for structure in a "new" chaotic world, 2) Homecoming an ambiguous experience, 3) Reaching the "new" self through reflections of self-understanding, 4) Socialising in new circumstances, and 5) Realising a new reality. CONCLUSIONS: While in hospital, stroke survivors can have unrealistic expectations. When at home they can begin to realise their actual capacity . To find a "new" self after a stroke can involve time-consuming and taxing processes of reflections of self-understanding. Engagement in self-selected meaningful and valued activities can support stroke survivors' reconstruction of the "new" self but not all stroke survivors may succeed in finding their "new" self during the first year after stroke.

Impact of stroke on people that receive rehabilitation and are living in Ankara, Turkey.

Background: Clinical guidelines for stroke rehabilitation and practices vary between high and low/middle-income countries (LMICs). Knowledge of the perceived impact of stroke in Turkey is limited. Understanding these perceptions can serve as a basis for developing rehabilitation. Design and methods: The aim was to investigate and compare the perceived impact of stroke in two groups of people living in Ankara. A cross-sectional study with 150 participants divided by stroke onset (Group I: stroke onset <12 months; Group II: >12 months) was conducted. The Barthel Index was used to describe the level of independence in daily living activities and stroke severity. The Stroke Impact Scale (SIS 3.0) was used to investigate the perceived impact of stroke. Results: The proportion of mild strokes was 78 and 82%, respectively, and 46% of participants in the total sample were moderately dependent. The impact of stroke was high; mean domain scores were below 50 in six of the eight SIS domains. Conclusions: Turkish stroke survivors perceived a higher impact of stroke regardless of the time passed since stroke onset, compared to survivors from other countries, including other LMICs. The high impact among survivors with mostly mild stroke indicates that Turkish survivors might not receive adequate rehabilitation. The content of rehabilitation services needs to be developed, and an evaluation of individually tailored interventions, preferably with a multidisciplinary approach, is warranted to find ways to decrease the perceived impact of stroke among Turkish stroke survivors.

Experiences of participation in everyday activities for people with stroke in Nairobi, Kenya.

BACKGROUND: Stroke is currently one of the greatest causes of disability and death in Kenya. Previous research indicates a lack of knowledge regarding how participation in everyday life is experienced after a stroke in Sub-Sahara Africa. OBJECTIVES: The aim was to explore and describe experiences of participation in everyday life for people who had had a stroke living in Nairobi, Kenya. METHODS: A qualitative study design using semi-structured interviews with nine people who have had a stroke, together with their caregivers. The inclusion criteria were: 1) stroke diagnosis 2) no psychiatric diagnosis, and 3) ability to understand and respond to instructions in English, or local language. All participants were living in the community, members of the Stroke Association of Kenya, and participated voluntarily. The transcribed interviews were analyzed using qualitative content analysis. RESULTS: The participants expressed their experiences of participation in everyday life, along with how resources and barriers affected their participation. Three categories were found:1) A sense of satisfaction at being involved in everyday life, 2) Challenges in doing everyday activities and social participation, and 3) Dependence as enabling or hindering participation. CONCLUSIONS: After stroke, people's experiences of participation in everyday life changed. Performing activities that the person found meaningful added a sense of increased participation and satisfaction. The experience of being dependent in everyday activities and finances appeared to reduce perceived participation. Participation in a group connected to a patient association with like-minded people contributed to a new role, and a sense of belonging.

Using experience-based co-design to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation.

AIM: To investigate and describe the process of using experience-based co-design (EBCD) to develop mobile/tablet applications to support a person-centred and empowering stroke rehabilitation. SETTING: Two cross-sectoral stroke rehabilitation settings in Denmark comprising six rehabilitation units. PARTICIPANTS: Stroke survivors (n = 23), significant others (n = 18), occupational therapists (n = 12), physiotherapists (n = 9), representative of a patient organization (n = 1), application developers (n = 3) and researchers (n = 2). METHOD: A structured, facilitated EBCD approach comprising six stages was used to co-design a service that aimed to address the priorities and needs of all relevant end-users. Data were collected by interviews, participant observations, notes on "flip sheets" and written feedback on the content in the apps and on the instruction pages. Data were analyzed descriptively and with a constructivist grounded theory analysis. RESULTS: The content in the application solutions "Mit Sygehus" and "Genoptræn.dk" were co-designed to support the needs identified by all end-users. Relevant evidence-based knowledge, person-centred exercises and guidelines using video recordings were the most important among the developed content in the applications to support person-centred and empowering stroke rehabilitation. Furthermore, easy, and seamless communication were considered important. CONCLUSIONS: EBCD facilitated the development of content in the applications to support a person-centred and empowering stroke rehabilitation. Participants experienced that their contribution was considered important and valued.

Many app-based solutions exist to support stroke rehabilitation; however, stroke survivors and significant others are seldom involved in the design of these solutions, which often reduces the uptake in clinical setting.By involving stroke survivors, significant others, therapists from diverse rehabilitation settings, patient organizations, app-designers, and researchers, we co-designed the content in two app-solutions to support a person-centred and empowering stroke rehabilitation, based on the needs and wishes of all stakeholders. Stroke survivors and significant others experienced that their voices were heard throughout the co-design process, and that their contribution was considered important and valued.