The centrality of work in everyday life after stroke: A qualitative study of long-term stroke survivors.

BACKGROUND: Work is an occupation of great concern for younger stroke survivors. Given the high rate of people not working after stroke, there is a need to explore work after stroke from a long-term perspective, including not just an initial return to work, but also the ability to retain employment and how this may affect everyday life after stroke. Therefore, the objective of this study was to explore experiences relating to work and to work incapacity among long-term stroke survivors. METHOD: This study used thematic analysis on data gathered through individual semi-structured interviews with long-term stroke survivors. RESULTS: The analysis resulted in four themes that together comprised the main theme 'The centrality of work in everyday life', containing descriptions of how everyday life was affected by aspects of work both for those who did work and those who did not return to work after stroke. CONCLUSION AND SIGNIFICANCE: The results highlight the importance of addressing return to work not just as an isolated outcome but as part of everyday life after stroke. The results indicate a need for a more flexible approach to supporting return to work that continues past the initial return.

Integrating consequences of stroke into everyday life - Experiences from a long-term perspective.

BACKGROUND: Occupational engagement encompasses both objective and subjective aspects of occupation. Long-term follow-up studies indicate that stroke can have a negative impact on the ability to perform IADL. Less is known about the subjective experiences of occupational engagement and how engagement may evolve after stroke. OBJECTIVE: To explore stroke survivors' experiences of occupational engagement and how engagement changed over time and across contexts. MATERIAL AND METHODS: Repeat, semi-structured interviews 15-18 years post-stroke, analysed using thematic analysis. Eight out of nine participants were classified as having had a mild stroke at onset. RESULTS: The analysis resulted in five themes that together formed the main theme 'It takes time - integrating consequences of stroke into everyday life by engaging in occupation, using internal resources and adapting to context'. This illustrated how occupational outcome was the result of a continuous process in which occupational engagement was a way of gradually integrating consequences of stroke into everyday life. CONCLUSION AND SIGNIFICANCE: Occupational engagement plays an important part in the process of moving on with life and can serve as both goal and means of achieving desired outcomes after stroke. Interventions that focus on enabling opportunities for occupational engagement in valued occupations and support the use of abilities and internal resources can reduce the impact of stroke in everyday life.

Long-term performance of instrumental activities of daily living in young and middle-aged stroke survivors-Impact of cognitive dysfunction, emotional problems and fatigue.

BACKGROUND: With an upward trend in the number of people who return home to independent living after stroke, the ability to perform more complex activities is becoming an increasingly important long-term outcome after stroke. Although associations between Instrumental Activities of Daily Living (IADL) and cognitive dysfunction, emotional problems, and fatigue have been reported, less is known about the long-term impact of these stroke consequences on the performance of everyday activities in young and middle-aged stroke survivors. OBJECTIVE: To explore the impact of cognitive dysfunction, emotional problems, and fatigue on long-term performance of instrumental activities of daily living in young and middle-aged stroke survivors. METHOD: Data on stroke survivors, aged 18-69 at index stroke, were collected from the Sahlgrenska Academy Study on Ischaemic Stroke. IADL outcome was assessed using the Frenchay Activities Index (FAI), and the impact of chosen variables was assessed using Spearman´s rank-order correlation and logistic regression. RESULTS: Seven years after index stroke, 296 stroke survivors (median age of 64) were included in this study. Cognitive dysfunction showed the strongest correlations with FAI outcome and independently explained worse outcome on FAI summary score and the domain of work/leisure activities. Fatigue was independently explanatory of worse outcome on FAI summary score and domestic chores, while depressive symptoms independently explained worse outcome on work/leisure activities. In a subgroup with only those participants who had no or minimal residual neurological deficits at follow-up (NIHSS score 0), cognitive dysfunction independently explained worse outcome on FAI summary score and work/leisure activities. Depressive symptoms independently explained worse outcome on FAI summary score and domestic chores. CONCLUSION: Our results show that in young and middle-aged stroke survivors, cognitive dysfunction, depressive symptoms, and fatigue negatively impact performance of IADL even at seven years post stroke onset. Further, we have shown that an impact of both cognitive dysfunction and depressive symptoms can be found also among stroke survivors with mild or no remaining neurological deficits.

Long-term performance of instrumental activities of daily living (IADL) in young and middle-aged stroke survivors: Results from SAHLSIS outcome.

BACKGROUND: Although stroke prevalence is increasing and large proportions of stroke survivors are expected to live many years after stroke onset, research on the long-term consequences of stroke for instrumental activities of daily living (IADL) is limited. AIM: To explore performance of IADL seven years post-stroke onset and identify predictors of long-term IADL performance based on commonly employed acute measures and demographic characteristics in young and middle-aged stroke survivors. METHODS: Data on stroke survivors were collected from SAHLSIS. IADL performance was assessed at 7 years using the Frenchay Activities Index (FAI). Demographic data and baseline measures were assessed as predictors of FAI outcome, using logistic regression. RESULTS: 237 stroke survivors with a median age of 63 at follow-up were included. Participants had predominantly suffered a mild stroke and >90% lived at home with no community services. Mean FAI was 25.7(score range 0-45), indicating reduced levels of participation in IADL. Frequency of performance of IADL was lowest for work/leisure activities. Gender, cohabitation status, initial stroke severity and baseline score on mRS were independently associated with IADL outcome. CONCLUSIONS: Reduced levels of participation in IADL persist many years after stroke onset and indicate a need to adapt a long-term perspective on stroke rehabilitation.

Linking the Klein-Bell Activities of Daily Living Scale to the International Classification of Functioning, Disability and Health.

OBJECTIVE: The main objective of this study was to link the Klein-Bell activities of daily living (KB) Scale to the International Classification of Functioning, Disability and Health (ICF), in order to validate the KB Scale content-wise. DESIGN: A qualitative approach was used with directed content analysis. METHODS: Concepts in the KB Scale items were linked to ICF categories according to established rules. This was followed by 4 analyses: examination of the linked categories' frequency distribution; comparison of these categories with core sets for spinal cord injury (SCI) and occupational therapists; calculation of content density, content diversity and range of linked categories; and calculation of agreement between two independent linkage versions. RESULTS: All except one identified KB Scale concept could be linked to ICF categories. The occupational therapists Core Sets were most consistent with linked categories in the KB Scale. Content density, content diversity and range varied between the different KB Scale dimensions. Agreement was reliable for the whole KB Scale and for 5 of 6 dimensions. CONCLUSION: The ICF has provided a valuable reference to identify and quantify the concepts in the KB Scale. Furthermore, comparison between the KB Scale and ICF Core Sets provides insights into areas covered by these instruments.

Comparison of visual acuity charts identifying visual impairment among older people outside the eye clinic.

PURPOSE: Evaluate the construct validity and describe sensitivity, specificity and predictive value of two short charts of visual acuity (VA) and examine whether these can identify and detect signs of visual impairment among older people. METHOD: The study included 43 persons, >65 years, with age related eye disease, living in their own homes. An ophthalmologist assessed the individuals' VA at an eye clinic with the 5 m KM chart. A research assistant assessed individuals' VA by the 1 m KM chart and the Visual Acuity Screening Test in their home environment. RESULTS: All persons with a VA level of <0.5 were correctly identified by both instruments. The instruments have good positive and negative predictive values for the 1 m KM chart (73% and 100%) and for the Visual Acuity Screening Test (69% and 100%). The construct validity between the instruments was good, but the assessment at the eye clinic assessed the participants as having higher VA level. CONCLUSIONS: Both instruments have good construct validity, considering they were carried out in poorer lighting conditions and a good predictive value for screening out VA levels <0.5. The 1 m KM chart showed the best agreement with the 5 m KM chart.

Getting used to assistive devices: ambivalent experiences by frail elderly persons.

The aim was to learn how frail elderly people experienced becoming assistive device users and how assistive devices affected their independence in daily activities. Focus-group methodology was used, including people 80 and older with multiple health problems. Five group discussions were conducted with a total of 18 people including 14 women and four men. Each group met once, for 90-120 minutes, and all discussions were audiotaped. Two themes emerged: Confidence in knowledge and experience and getting used to assistive devices in daily activities. Confidence in knowledge and experience was formed by two categories of experiences from the prescription procedure: trust the expert and trust yourself, and to have confidence in having the right information about assistive devices. Getting used to assistive devices in daily activities was formed by five categories of ambivalent experiences when using assistive devices in daily activities: creates opportunities and limitations; provides security but also raises concerns; the need is seen as transient or permanent; the social environment both encourages and restricts; the physical environment both facilitates and complicates, with less extreme experiences in between. This study indicates that frail elderly people need specifically developed support in the process of becoming assistive device users.

Virtual rehabilitation in an activity centre for community-dwelling persons with stroke. The possibilities of 3-dimensional computer games.

BACKGROUND: The main purpose of this study was to place a virtual reality (VR) system, designed to assess and to promote motor performance in the affected upper extremity in subjects after stroke, in a nonhospital environment. We also wanted to investigate if playing computer games resulted in improved motor function in persons with prior stroke. METHODS: The intervention involved 11 patients after stroke who received extra rehabilitation by training on a computer 3 times a week during a 4-week period. The control group involved 11 patients after stroke who continued their previous rehabilitation (no extra computer training) during this period. The mean age of all was 68 years (range = 47-85) and the average time after stroke 66 months (range = 15-140). The VR training consisted of challenging games, which provided a range of difficulty levels that allow practice to be fun and motivating. An additional group of 11 right-handed aged matched individuals without history of neurological or psychiatric illnesses served as reference subjects. RESULTS: All the participants reported that they were novel computer game players. After an initial introduction they learned to use the VR system quickly. The treatment group demonstrated improvements in motor outcome for the trained upper extremity, but this was not detected in real-life activities. CONCLUSIONS: The results of this research suggest the usefulness of computer games in training motor performance. VR can be used beneficially not only by younger participants but also by older persons to enhance their motor performance after stroke.

Virtual rehabilitation after stroke.

The purpose of this project was to investigate the effects of Virtual Reality technology and haptics for stroke rehabilitation. Twenty-nine stroke subjects, 17 women, and 12 men aged 44-85 years, participated in three different studies. All participants responded favorable to the use of the VR activity station. A change of attitude took place after the subjects were exposed to playing computer games. The general experience with the VR application approach suggests that this treatment concept is promising in stroke rehabilitation, with a wide range of applicability.

Consequences of severity at stroke onset for health-related quality of life (HRQL) and informal care: a 1-year follow-up in elderly stroke survivors.

Severity of stroke influences the possibility of living at homes after stroke and has been discussed as one possible prognostic factor for functional outcome and future residence. The objective was to explore how severity at stroke onset affects health-related quality of life (HRQL) and informal care among 147 stroke survivors and their spouses living in their own homes 1 year after acute stroke. This study is part of "The Göteborg 70+ Stroke Study" which included 249 elderly persons after acute stroke. One year after stroke 59% of the survivors, 94 women and 53 men, lived in their own homes. This group forms the present study population. They were subdivided according to the severity of stroke at onset, as assessed by Barthel index (BI) ratings in the acute phase. The stroke survivors rated their HRQL and were interviewed in their own homes to assess the effects of stroke on daily life activities and informal care after 1 year. Informal caregivers were found to assist their spouses to a great extent, regardless of severity of stroke. Persons with moderate/severe stroke at onset received more informal as well as more formal help than the ones with mild stroke. As expected, the group with moderate/severe stroke also was more dependent on personal assistance, used more assistive devices (ADs) and rated their HRQL lower. However, persons who were assessed as mild stroke at onset also needed informal care, particularly with more complex tasks. Gender differences were obvious, since many women were living alone after their partner had died, while the men usually had assistance from their spouses. Noteworthy is that informal caregivers assisted their spouses to a large extent, regardless of severity of stroke at onset. Different kind of support programs, extended day rehabilitation centers and more relieve places should be developed. That could possibly improve the life situation for the elderly stroke survivors and their caregivers, generally an elderly spouse.

Test-retest of a Swedish version of the Pulmonary Functional Status & Dyspnea Questionnaire-modified.

The number of people suffering from chronic obstructive pulmonary disease (COPD) is increasing. From an occupational therapy perspective, it is important to estimate dyspnea, fatigue and activity performance in daily activities to be able to use the most effective interventions. In Sweden, there are several assessments for evaluating activities in daily living, but none of them are diagnosis specific for this group. The Pulmonary Functional Status & Dyspnea Questionnaire-Modified (PFSDQ-M) is a self-completion assessment, which takes a short time to complete. The aim of this study was to translate the PFSDQ-M into Swedish and test it twice on 30 people to make a test-retest assessment. The aim was also to evaluate the interviewees' experience of filling in the form. Agreement between the assessments was examined by percentage agreement (PA) and unweighted kappa value (k). The test-retest shows the complexity of evaluating the influence of dyspnea and fatigue in performing activities. It was easier to reach agreement in a five-point scale compared to an eleven-point scale. When it comes to screening people with COPD, the PFSDQ-M can be a valuable instrument for detecting individuals who require occupational therapy.

Gender perspective on informal care for elderly people one year after acute stroke.

BACKGROUND AND AIMS: The aim of the one-year follow-up was to evaluate formal care and the situation of informal caregivers from a gender perspective. METHODS: The present study targeted elderly persons (n = 147) living in their own homes 12 months after acute stroke, 94 women and 53 men. The median age of the women was 81 years and the men 80 years. RESULTS: A statistically significant gender difference was seen in living conditions. Eighty percent of the women were living alone compared with 28% of the men (CI 48-56%). The informal care given far exceeded that provided by the community: 65% of these elderly people had some kind of informal care and 44% received formal care from the community. There was a gender difference in daily informal personal care, 24% of men and 16% of women (CI 2-18%), and in daily informal household assistance (CI 15-43%). Formal care was provided by the community significantly more frequently to women (56%) than men (23%) (CI 21-45%). The women more frequently had community-based help with house-cleaning (CI 23-39%) and they also more frequently received help with personal care (CI 1-10%). CONCLUSIONS: This study showed statistically significant gender differences in the use of informal and formal care. Elderly caregivers' situations must be given greater attention, since informal care to stroke survivors represents a far greater burden than the care that is provided by the community. Most of the caregivers were elderly women, and preventive intervention measures should be developed in order to enable them to manage their everyday lives.

Cognitive impairment after stroke - impact on activities of daily living and costs of care for elderly people. The Göteborg 70+ Stroke Study.

BACKGROUND AND PURPOSE: The economic burden of stroke is substantial and is likely to increase with an increasing number of elderly individuals in the population. There is thus a need for information on the use of health care resources and costs among these elderly stroke patients. We examined the impact of the cognitive impairments on the ability to perform activities of daily living (ADL) and utilization and costs of health care in a cohort of elderly stroke patients. METHODS: One hundred and forty-nine patients aged >/=70 years with acute stroke were included. The patients were assessed regarding their ability to carry out ADL and health resource utilization and cost during the first year after stroke. Cognitive impairments were assessed 18 months after the index stroke. RESULTS: Stroke severity in acute stroke and cognitive impairment at 18 months after stroke onset was associated with impairment in ADL and increased costs for utilisation of care during the first year. Patients with cognitive impairment were more dependent on personal assistance in ADL. Costs per patient during the study were three times higher for patients with cognitive impairment. Hospital care, institutional living and different kinds of support from society accounted for the highest costs. CONCLUSIONS: Costs of care utilisation during the first year after stroke were associated with cognitive impairments, stroke severity and dependence in ADL. The results should be interpreted cautiously as the assessment of cognitive function was made 18 months after stroke onset and costs were estimated for the first year after stroke.

Hospital re-admissions in relation to acute stroke unit care versus conventional care in elderly patients the first year after stroke: the Göteborg 70+ Stroke study.

BACKGROUND: re-hospitalisation after discharge following index stroke varies over time and with age and comorbidity. There is little knowledge about whether stroke unit care reduces the need of re-admissions. OBJECTIVES: to examine whether stroke unit care as compared with care in general medical wards was associated with fewer re-hospitalisations for conditions judged to be secondary to acute stroke and to identify the influence of stroke severity on re-admission rates. DESIGN: we conducted a one-year randomised study to compare the outcome of treatment at an acute stroke unit in a care continuum with the outcome of treatment at general medical wards. SETTINGS: acute and geriatric hospitals in Göteborg, Sweden. SUBJECTS: 216 elderly patients aged >or=70 years discharged to their own homes or to institutionalised living after index stroke. METHODS: comparison of comorbidity classified according to Charlson's morbidity index, re-admission rates, length of hospital stay, number of re-admissions and diagnoses between a group treated at a stroke unit and a group treated at general wards. RESULTS: the re-admission rates, length of hospital stay and causes of re-admissions did not differ between the two groups. Complications related to the damage to the brain and concomitant heart disease were the most common causes of re-admissions in both groups. Index stroke severity did not influence the re-admission rates. CONCLUSIONS: re-admissions for conditions judged to be secondary to acute stroke were equal in the two groups in this prospective study.

Characteristics of elderly people readmitted to the hospital during the first year after stroke. The Göteborg 70+ stroke study.

BACKGROUND AND PURPOSE: Readmissions after acute stroke vary over time and with age and comorbidity. Knowledge of the reasons for readmissions and characteristics of readmitted patients is sparse. This 1-year prospective study examined whether readmissions were related to severity of the index stroke or to comorbidity and explored outcomes in readmitted patients with respect to daily life activities and health-related quality of life. METHODS: The study included 216 elderly patients (aged >/=70 years) discharged to their homes or a nursing home after index stroke. The main outcomes were readmission rates and reported diagnoses, performance of daily life activities and health-related quality of life. RESULTS: Nearly half (45%) of the patients were readmitted to the hospital after being discharged to their homes. One readmission was most common, and stroke-related diagnoses were most frequently reported as the reason for readmission. Different forms of heart disease were the next most common reason. The readmitted patients were significantly more dependent in daily life activities, and health-related quality of life was significantly lower among this group. CONCLUSIONS: Recurrent stroke and sequelae after stroke were major factors behind readmissions, followed by heart disease in elderly stroke patients. The readmitted patients were more dependent in daily life activities and reported a lower health-related quality of life compared with not readmitted patients.

Use and cost of assistive technology the first year after stroke. A randomized controlled trial.

OBJECTIVE: The objective was to compare and evaluate assistive technology given to patients treated in a stroke unit and patients treated in a general medical ward. METHOD: Use and cost of assistive technology was evaluated in a randomized study comprising 249 patients during a 12-month period. RESULT: Acute stroke unit care was associated with a higher prescription of assistive devices during the first 3 months. There was no difference in use and total mean cost per patient of assistive technology during the first year after stroke. CONCLUSION: There was no difference in use or cost of assistive technology during the first year, but a beneficial effect was found on supplementary prescription of assistive devices during the first 3 months. The cost during the first year after stroke was a small fraction of the total costs for care and rehabilitation. It is not expensive for the community to equip these patients and their caregivers with assistive technology, and economic resources should be available to this vulnerable group of elderly patients.