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.

A Theoretical Model for Urban Walking Among People With Disabilities.

This paper is an attempt to advance research on walking at a neighborhood level of analysis for people with disabilities by proposing a theoretical model that combines the knowledge of two disciplines: traffic planning and environmental psychology. The aim is to provide guidance for a discussion and a plan for future interdisciplinary investigations by proposing a model that accounts for the dynamic interaction between environmental characteristics, human processes, and walking experience among individuals with a disability. For this purpose, traffic planners, and environmental psychologists came together to discuss theories, concepts, and thematic relevance in a series of focus group meetings. These meetings led to the selection of the Human Environment Interaction (HEI) model, originally developed from the field of environmental psychology and operationalized to describe how walking experiences result from the interplay between individual abilities, emotional processes, and the physical and social characteristics of the environment (Küller, 1991). The proposed model aims to sustain interdisciplinary discussion and research planning around the topic of neighborhood walking for people with disabilities. By operationalizing each dimension in the model, a good fit between groups with disabilities and individual differences associated with walking experiences is assumed, which, in turn, will have the potential to provide a more conscious analysis of wellbeing-related outcomes, such as usability of the environment, frequency of mobility, and quality of life. However, to improve understanding of urban walking at a neighborhood level for people with disabilities, empirical studies must be carried out to test the proposed model.

Dignity as a guiding principle for family care partners in the care of an old relative with dementia.

AIM: There is a growing number of older people (65+) with dementia, and many family care partners are involved in making help-seeking choices. The aim of this study was to reveal how family care partners with an old relative with dementia proceed in the name of dignity in their desire to secure the best care possible while still maintaining their own dignity. METHODS: Data were collected in 2009-2010 in open semi-structured interviews and follow-up contacts with seven family care partners with an old relative with dementia on 14 occasions. From this collected data and for this study, a design based on patterns labelled archetypes was chosen to permit an in-depth data analysis. RESULTS: In the analysis, three archetypes emerged, emanating from three specific family care partners. A prominent feature in the findings was that the dignity of an old relative with dementia was hard to separate from the dignity as a family care partner, which gave rise to their need to express accounts in terms of excuses and justifications. CONCLUSION: This study provides an important insight into the connection between different elements of dignity and it contributes to explain the complexity behind family care partners' decisions in the care of an old relative with dementia. This multifaceted meaning of dignity needs more attention for a better understanding and thereby implementation in practice and in the follow-up of policy for older people.

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.

How older people as pedestrians perceive the outdoor environment - methodological issues derived from studies in two European countries.

This paper has re-analysed and compared data between three studies conducted in the United Kingdom and in Sweden (the OPUS 'Older People's Use of Unfamiliar Space' study in the United Kingdom and the Swedish studies 'Let's Go for a Walk' and 'Walking in Old Age') to provide a comprehensive account of the issues facing older people in the outdoor environment. All three studies draw on the 'fit' between the person and their environment as a guiding conceptual base - capturing the dynamics of the relationship between older people's personal needs and their wider environmental context. This common conceptual base allowed us to test theory against practice, and to explore the utility of this concept across different geographical contexts. Participatory research was also applied, highlighting the importance of the voice of older people and involving older people in research. The studies also used a mixed-method approach involving both quantitative and qualitative methods. The paper highlights that although not generalisable, you can compare cross-locales and cross-nationally using different methodology; it investigates the challenges of cross-national comparative analysis and draws on findings from the three studies to illustrate the different challenges and solutions and finally looks at lessons that are transferable.

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.

Long-Term Predictors of Social and Leisure Activity 10 Years after Stroke.

BACKGROUND: Restrictions in social and leisure activity can have negative consequences for the health and well-being of stroke survivors. To support the growing number of people who are ageing with stroke, knowledge is needed about factors that influence such activity in a long-term perspective. AIM: To identify long-term predictors of the frequency of social and leisure activities 10 years after stroke. METHOD: 145 stroke survivors in Sweden were followed-up at 16 months and 10 years after a first-ever stroke. Data representing body functions, activities & participation, environmental factors and personal factors at 16 months after stroke, were used in multiple linear regression analyses to identify predictors of the activity frequency after 10 years, as assessed by the 'Community, social and civic life' sub-domain of the Frenchay Activities Index (FAI-CSC). RESULTS: At the 10-year follow-up the frequency of social and leisure activities varied considerably among the participants, with FAI-CSC scores spanning the entire score range 0-9 (mean/median 4.9/5.0). Several factors at 16 months post stroke were independently related to the long-term activity frequency. The final regression model included four significant explanatory variables. Driving a car (B = 0.999), ability to walk a few hundred meters (B = 1.698) and extent of social network (B = 1.235) had a positive effect on activity frequency, whereas an age ≥ 75 years had a negative effect (B = -1.657). This model explained 36.9% of the variance in the FAI-CSC (p<0.001). CONCLUSION: Stroke survivors who drive a car, have the ability to walk a few hundred meters and have a wide social network at 16 months after a first-ever stroke are more likely to have a high frequency of social and leisure activities after 10 years, indicating that supporting outdoor mobility and social anchorage of stroke survivors during rehabilitation is important to counteract long-term inactivity.

Activity among long-term stroke survivors. A study based on an ICF-oriented analysis of two established ADL and social activity instruments.

PURPOSE: To describe activity in different aspects of daily life among long-term stroke survivors, and conceptualise the content of the Barthel Index (BI) and the Swedish extended and modified Frenchay Activities Index (mFAI) using the ICF framework. METHOD: Assessments were performed by means of the BI and the mFAI at a 10-year follow-up of 145 consecutive stroke survivors from Lund Stroke Register, Sweden. After linking the two instruments to the ICF core set for stroke, data were analysed and presented in terms of activity-specific domain-scores for the total sample and sub-groups according to gender and age. RESULTS: Together the two instruments covered 69% of the Activities and participation component of the ICF core set for stroke. Two activity-specific domains were identified within the BI and six within the mFAI. Most participants reported a high overall activity level. Inactivity was most common among those ≥80 years. Men and women participated in different types of activities and used different modes of transport. CONCLUSIONS: Long-term stroke survivors have a high activity level in daily life, though individual variation is considerable. The structure provided by linking instruments to the ICF core set for stroke can be used for more fine-tuned descriptions of activity. Implications for Rehabilitation Since most long-term stroke survivors are independent in ADL but may have limitations in other activity domains such as social and leisure activities, these aspects should be considered in the rehabilitation process. Older stroke survivors deserve special attention due to their higher risk of long-term inactivity. The Barthel Index and the Swedish extended and modified Frenchay Activities Index are complementary for assessments of ADL and social activity after stroke and cover over two thirds of the Activities and participation component in the ICF core set for stroke.

Functional status and patient-reported outcome 10 years after stroke: the Lund Stroke Register.

BACKGROUND AND PURPOSE: Long-term studies of outcome after stroke are scarce. Our aim was to study functional status and patient-reported outcome 10 years after a first-ever stroke. METHODS: Ten-year follow-up was conducted among the survivors from a population-based group of 416 patients included in the Lund Stroke Register, Sweden, between March 1, 2001, and February 28, 2002. The Barthel index was used to assess the functional status and the modified Rankin Scale to assess the degree of disability. The EQ-5D scale was used for survivors' self-reports about health outcome and the specific Short-Form 36 (SF-36) question for rating their overall health. The patients also reported their frequency of physical activity. RESULTS: Among 145 survivors 10 years after stroke (median age, 78 years), 59% were men, 90% lived in their ordinary housing, 73% were assessed as independent, and 71% had no or slight disability. The need of assistance with mobility and self-care was reported by 14% and with usual activities by 22%. Moderate pain was reported by 39%, and 4% had a high degree of pain. Moderate anxiety/depression was reported by 28% and high degree only by 1%. Overall health status was reported in positive terms by more than two thirds of the survivors. Almost half the cohort reported the same frequency of physical activity (≥4× weekly) as before stroke onset. CONCLUSIONS: This study indicates that 10-year stroke survivors in Sweden are mostly independent in daily activities and report good overall health and frequent physical activity, although half of them are ≥78 years.

Inter-rater agreement of a modified and extended Swedish version of the Frenchay Activities Index (FAI).

The point of departure for this study was the need for an instrument capturing social activities updated to the living circumstances of the 21st century. Starting out from the Frenchay Activities Index (FAI), the objective was to investigate the inter-rater agreement of the scoring of a modified and extended Swedish version, capturing activity performance and participation. Thirty-one older people, living in the community post stroke, were interviewed in their homes by two raters using the Swedish FAI version, extended with items on use of mode of transport and use of telephone, and modified with additional scales. Besides the original frequency scale, the new scales captured changes in frequency, reasons for change, and performance satisfaction; inter-rater agreement was analyzed with kappa statistics. Overall, the inter-rater agreement was high or very high, with weighted [Formula: see text] = 0.924 for the frequency scale and [Formula: see text]= 0.784-0.940 for the new scales. As a conclusion, while further validity and reliability testing is necessary, when out-of-home activities are of interest the scoring of the modified and extended Swedish FAI version can be administered with high inter-rater agreement.

Family members' strategies when their elderly relatives consider relocation to a residential home--adapting, representing and avoiding.

The aim of this article is to reveal how family members act, react and reason when their elderly relative considers relocation to a residential home. Since family members are usually involved in the logistics of their elderly relative's relocation, yet simultaneously expected not to influence the decision, the focus is on how family members experience participation in the relocation process in a Swedish context. 17 family members are included in 27 open, semi-structured interviews and follow-up contacts. Prominent features in the findings are firstly the family members' ambition to tone down their personal opinions, even though in their minds their personal preferences are clear, and secondly, the family members' ambivalence about continuity and change in their everyday lives. Family members are found to apply the adapting, the representing, or the avoiding strategy, indirectly also influencing their interaction with the care manager. Siblings applied the adapting strategy, spouses the representing strategy, while family members in the younger generation at times switched between the strategies.

Barriers to senior citizens' outdoor mobility in Europe.

The aim of this study was to picture perceived problems amongst older citizens in the traffic environment. Moreover, answers to the question why measures that are known to be efficient concerning the mobility of senior citizens are often not implemented. Eight EU countries participated in the study, involving both senior citizens and experts (researchers, decision makers and practitioners who deal with all aspects of seniors' mobility). Focus group interviews and personal interviews involving 487 senior citizens and 225 experts were carried out in order to chart problems. These were followed by quantitative surveys with 3,309 senior citizens and 490 experts that had the scope to measure the distribution of charted problems in the population. Finally, five workshops were carried out in order to discuss results and to formulate assumptions why promising measures are not implemented, as it appears. Barriers to mobility are by both experts and senior citizens attributed to traffic and infrastructure characteristics, to legal issues, to vehicle design problems, to inter-personal and inter-generational frictions, to lacking lobby power, but also to individual health problems. In order to improve mobility it is suggested by both senior citizens and experts to enforce vehicle speeds. Both groups also agree that public transport vehicles should be brought into an appropriate standard (low floor vehicles, kneeling busses). Senior citizens more than the experts ask for measures to support the sense of security and safety in the public space (police should be visible, appropriate design of infrastructure, public lighting).

Detection of warning surfaces in pedestrian environments: the importance for blind people of kerbs, depth, and structure of tactile surfaces.

PURPOSE: The overall purpose was to study whether and how persons with blindness detect warning surfaces with a long white cane in a real pedestrian environment after following a natural guidance surface to the warning surfaces. Of particular interest was the importance of kerb, depth, and structure of the warning surfaces. METHOD: A concurrently mixed methods approach, with a combination of observation using a structured form together with 'think aloud' and a structured interview, was used. It was done with well-defined samples and study sites in an inter-disciplinary research context. RESULTS: The results show that the most important design characteristic for detection of the warning surfaces with a white cane is the structure of the surface, while the depth of the surface and availability of a kerb do not have any impact on the detection. A precondition was that there is a distinct natural guidance surface leading up to the warning surface. CONCLUSIONS: The probability among pedestrians with blindness to detect a tactile surface is not higher if the design solution has a kerb. This study also confirms the complexity of being a blind pedestrian in the traffic environment. The results can be used for evidence-based physical planning. The study also has implications for development of more efficient vision rehabilitation.

Post-stroke functional limitations and changes in use of mode of transport.

PURPOSE: To investigate the use of different modes of transport and long-term changes among stroke survivors with cognitive functional limitations (CFLs), and to study differences among sub-groups (decreased/ceased vs. unchanged and increased public transport use) regarding physical functional limitations (PFLs), CFLs, depression, and social activity outside home. METHOD: Survey of 79 individuals living in the community with CFLs post-stroke (mean 26 months). Well-established and study-specific instruments were used capturing the mode of transport use, CFLs (professionally assessed and self-reported), depression symptoms, and PFLs. RESULTS: Over one third of the participants reported decreased/ceased use of bus and train, among whom more PFLs were found in comparison with those reporting unchanged use and more depression was found in comparison with those showing increased use. There were no sub-group differences concerning occurrence of CFLs and decrease in social activity. The use of own car or motorbike had largely ceased, most often replaced by Special Transportation Service or travelling by private car or taxi. Yet 27% were still frequent car drivers. CONCLUSION: The results indicate considerably affected use of modes of transport after stroke, and higher frequencies of PFLs and symptoms of depression among those with decreased/ceased public transport use.

Older pedestrians' perceptions of the outdoor environment in a year-round perspective.

This paper focuses on older peoples' needs as pedestrians by examining their perceptions of the outdoor environment in both bare-ground and snow/ice conditions. Qualitative and quantitative methods are used, including focus group interviews, participant observations, and questionnaires. The results show that older people consider accessibility/usability issues as very important and that the importance depends on such individual background variables as age, sex, occurrence of functional limitations, use of mobility devices, and dependence on walking as transport mode. In bare-ground conditions, physical barriers are more important for the oldest old (80+) and for older people with functional limitations or mobility devices. However, orderliness-related issues (e.g. cyclists in pedestrian areas, lighting, and litter/graffiti) are equally important regardless of the background variables. In snow/ice conditions, ice prevention is considered more important than snow removal. Snow removal on a detailed level (e.g. removal of heaps of snow on pavements and zebra crossings) is emphasised. In conclusion, it is important to study subgroups, not older people as one group, in the analysis of accessibility/usability of outdoor environments. Further, even though those accessibility issues emphasised in current Swedish governmental directives on accessibility are considered as important by older people themselves, especially among the oldest old and among those with functional limitations and mobility devices, the needs will not totally be fulfilled by current directives. For example, winter maintenance, problems with cyclists in pedestrian areas, and the need for benches are neglected.

Long-term cognitive functional limitations post stroke: objective assessment compared with self-evaluations and spouse reports.

This study was part of a Swedish interdisciplinary research project targeting accessibility problems in public transport for people with cognitive functional limitations (CFLs). The objective was to describe and compare different assessment perspectives of long-term CFLs among community citizens having had CFLs in the acute stroke phase but with moderate physical limitations. Eighty-four participants in ordinary housing 18-36 months post stroke, initially sampled from a national quality stroke register, received data collection home-visits. The Cognistat screening instrument was used for an objective assessment, and a study-specific questionnaire for self-evaluations of CFLs. A revised form of the latter questionnaire was used for reports from spouses of a subset of 30 participants. The agreement between self-evaluated CFLs and spouse reports was analysed by percentage agreement and Cohen's kappa, whereas differences in ratings were tested by McNemar's test, as were differences between objective and self-evaluated/spouse-reported occurrence of CFLs. Regardless of the different perspectives applied, CFLs were frequent. In absence of significant difference in ratings, the percentage agreement between self-evaluations and spouse reports was good or very good, whereas kappa values were less encouraging. Overall, participants and spouses expressed more CFLs, as compared with the screening. Most consistency was demonstrated for the area of calculation. When researchers and clinicians solely rely on cognitive screenings in their investigations, there is a considerable risk for underestimations of CFLs.

"Let's go for a walk!": identification and prioritisation of accessibility and safety measures involving elderly people in a residential area.

By emphasising the involvement of elderly people in a project applying a mixed-method approach, the overriding objective of this study was to identify and prioritise concrete measures aimed at increasing accessibility and safety in the outdoor pedestrian environment within a residential area of a Swedish town. Measures generally given priority were: the separation of pedestrians/cyclists, lower speed limits, better maintenance and specific measures in pedestrian walkways such as wider sidewalks, curb levels and form and more even surfaces on pavements. Definition of these priorities offered knowledge to the highway department concerning the importance of small details in relation to the larger infrastructure. The elderly people in the study district found new ways to communicate with and influence those within the community who are responsible for these matters.

Very old people's use of the pedestrian environment: functional limitations, frequency of activity and environmental demands.

Due to decreased functional capacity as well as high environmental demands there is a risk of diminishing activity outside home in very old age (age 80+). In order to explore differences according to functional limitations (FL) among very old people with respect to frequency of activity, perceived health, overall perception of neighbourhood environment, and perceived problems in the pedestrian environment, data derived from a postal questionnaire survey to very old people living in an urban area in Sweden were used. This explorative study is based on the sub-sample of people aged 80+ who reported outdoor activities (n = 97). Four groups of respondents with different types of FL were identified: with no FL (n = 23), with only movement-related FL (n = 26), with only perception/cognition-related FL (n = 16), and with both movement- and perception/ cognition-related FL (n = 32). The majority of the respondents reported rather high frequency of activity outside home. When examining differences between the four groups, the analysis indicated how the complexity of FL and perceived problems in the pedestrian environment impacted on their activity performance. Persons with both movement- and perception/cognition-related FL were less satisfied with their frequency of activity, experienced their health more negatively and experienced more problems in the pedestrian environment than in the other groups. The findings from this study indicate the importance of considering combinations of FL in creating supportive environments for activity and health.

Safety as perceived by wheelchair-seated passengers in special transportation services.

The aim of this study was to gain a better understanding of, and to help form a more complete picture of, the perceived safety of wheelchair-seated passengers using special transportation services (STS). A questionnaire was sent out and completed by 801 respondents in five Swedish regions. Additional information was acquired by means of 15 subsequent in-depth interviews. It was found that 5% reported personal incident-related injuries during the period that they had been eligible for STS. Injuries were most likely to occur during normal driving, but the passengers were also exposed to risks during boarding and alighting procedures. Nevertheless, 80% of the passengers were basically satisfied with the degree of safety. A large majority (97%) reported that they always use tie-down systems, and 78% always use safety belts. These results indicate that, despite general satisfaction with the STS system as such, malfunction of the existing safety equipment is a problem, since safety is especially critical for STS passengers-a vulnerable road-user group with few alternative travel modes. Therefore, there is a need for wheelchair tie-down and occupant restraint systems (WTORS) that are easier to handle by the operators and more suitable for the passengers and their wheelchairs. A low-floor vehicle concept might also reduce injury risks related to boarding and alighting procedures.