Lisa Ekstam

The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1 year after stroke: a mixed methods study.

Objectives The aim of the study was to explore the associations between the dyad’s (person with stroke and informal caregiver) perception of the person with stroke’s rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1 year after stroke. Design A mixed methods design was used combining quantitative and qualitative data and analyses. Setting Data were mainly collected in the participants’ homes. Outcome measures Data were collected through established instruments and open-ended interviews. The dyads perceptions of the person with stroke’s rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware’s taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. Participants 86 persons with stroke (mean age 73 years, 38% women) and their caregivers (mean age 65 years, 40% women). Results Fifty-two per cent of the dyads perceived that the person with stroke’s need for rehabilitation was met 12 months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. Conclusions Rehabilitation interventions need to focus on supporting the dyads’ process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation.

A cluster randomized controlled trial of a client-centred, activities of daily living intervention for people with stroke: one year follow-up of caregivers

Objective: Compare caregiver burden, provision of informal care, participation in everyday occupations and life satisfaction of caregivers to people with stroke, who either had received a client-centred, activities of daily living intervention or usual activities of daily living interventions. Design: A multicentre cluster randomized controlled trial in which 16 rehabilitation units were randomly assigned to deliver a client-centred, activities of daily living intervention or usual activities of daily living interventions. Caregiver outcomes were compared cross-sectionally at 12 months and changes in outcomes between three and 12 months after people with stroke were included in the study. Setting: Inpatient and outpatient rehabilitation. Participants: Caregivers of people with stroke enrolled in the trial. Intervention: A client-centred, activities of daily living intervention aiming to increase agency in daily activities and participation in everyday life for people after stroke. Main measures: Caregiver Burden Scale, Occupational Gaps Questionnaire, LiSat-11. Results: There were no differences in outcomes between caregivers in the client-centred, activities of daily living (n = 88) and the usual activities of daily living (n = 95) group at 12 months. The caregiver burden score was 42.7 vs. 41.8, p = 0.75, mean occupational gaps were 3.5 vs. 4.0, p = 0.52 and satisfaction with life was 53% vs. 50%, p = 0.87. There were no differences in changes between three and 12 months. However, within groups there were significant differences in caregiver burden, factor general strain, for caregivers in the client-centred, activities of daily living group, and in provision of informal care for the usual activities of daily living group. Conclusion: The client-centred intervention did not bring about any difference between caregiver-groups, but within groups some difference was found for caregiver burden and informal care.

Differences in awareness between persons with left and right hemispheric stroke

Abstract Aim: The aim of this study was to investigate whether there are any differences in awareness of ability between persons with left and right hemispheric stroke. Methods: The sample consisted of data from the Assessment of Awareness of Ability (A³) database, primarily consisting of clients admitted to occupational therapy services. In total the study included 183 data records from clients, 78 with left and 105 with right hemispheric stroke. Awareness of ability was assessed using the Assessment of Awareness of Ability (A³). Differences in awareness were investigated using t-tests, CI, effect size, and differential item functioning. Results: No significant overall mean difference (t-test = 1.31, p = 0.19) in awareness between left and right hemispheric stroke was identified. However, significant differences (p < 0.05) were identified on three specific items included in the A³. In these cases, persons with right hemispheric stroke showed a more limited awareness. Conclusion: Persons with right hemispheric stroke have more pronounced problems with being aware of limitations in specific ADL performance skills compared with persons with left hemispheric stroke.

Heterogeneity of Characteristics among Housing Adaptation Clients in Sweden-Relationship to Participation and Self-Rated Health.

The aim of the paper was to explore the heterogeneity among housing adaptation clients. Cluster analysis was performed using baseline data from applicants in three Swedish municipalities. The analysis identified six main groups: “adults at risk of disability”, “young old with disabilities”, “well-functioning older adults”, “frail older adults”, “frail older with moderate cognitive impairments” and “resilient oldest old”. The clusters differed significantly in terms of participation frequency and satisfaction in and outside the home as well as in terms of self-rated health. The identification of clusters in a heterogeneous sample served the purpose of finding groups with different characteristics, including participation and self-rated health which could be used to facilitate targeted home-based interventions. The findings indicate that housing adaptions should take person/environment/activity specific characteristics into consideration so that they may fully serve the purpose of facilitating independent living, as well as enhancing participation and health.

Negotiating Control: From Recognizing a Need to Making a Decision to Apply for a Housing Adaptation

ABSTRACT A housing adaptation (HA) can enable independent living in ones own home, but deciding to change the home environment can be a thought-provoking matter. The aim of this study was to explore the applicants perspective and decision-making process when applying for an HA grant. Seventeen persons were interviewed about their application for such a grant, and the data were analyzed using a constant comparative approach. The findings illustrated how the participants negotiated control in their everyday lives as they went from recognizing a need to then deciding to apply for an HA grant. Before coming to a decision, alternative solutions were considered and their expectations on the effect of having an HA were explored. This knowledge is useful for professionals and caregivers to help support people during the HA decision-making process.

Factors associated with participation frequency and satisfaction among people applying for a housing adaptation grant.

Abstract Background: People applying for a housing adaptation (HA) grant are at great risk of participation restrictions due to declining capacity and environmental barriers. Aim: To investigate the association of person-, environment-, and activity-related factors with participation frequency and satisfaction among people applying for a housing adaptation grant. Material and methods: Baseline cross-sectional data were collected during home visits (n = 128). The association between person-, environment-, and activity-related factors and participation frequency and satisfaction was analysed using logistic regressions. Results: The main result is that frequency of participation outside the home is strongly associated with dependence in activities of daily living (ADL) and cognitive impairments, while satisfaction with participation outside the home is strongly associated with self-reported health. Moreover, aspects of usability in the home were associated with frequency of participation outside the home and satisfaction with participation in the home and outside the home alone. Conclusion: Dependence in ADL, cognitive impairments, self-rated health, and aspects of usability are important factors contributing to participation frequency and satisfaction among people applying for a housing adaptation grant, particularly outside the home. Significance: Our findings indicate that more attention should be directed towards activity-related factors to facilitate participation among HA applicants, inside and outside the home.

Falls and Fear of Falling among Persons Who Receive Housing Adaptations—Results from a Quasi-Experimental Study in Sweden

While health might deteriorate through the ageing and disablement process, the impacts of disability can be reduced by adapting the environment. This study aimed to investigate the effects of applying a standardized research-based strategy to housing adaptation as compared to ordinary practice with respect to falls and fear of falling. Another aim was to investigate the overall effects of housing adaptations on fall-related outcomes over time. In total, 196 clients were included at baseline, with follow-up at 3 and 6 months after the housing adaptation was implemented. The only significant difference between the two approaches was identified with respect to fear of falling at 3 months after the housing adaptation, but not after 6 months. The number of clients reporting actual falls increased over time in both sites, whereas the number of reported near-falls decreased most in the intervention site, but without significant differences. Thus, the patterns of differences between the sites are inconsistent, as are the patterns of change in fall-related outcomes. An overall conclusion is that if the goal is to improve fall-related outcomes, housing adaptation should be complemented with other interventions preventing falls and explicitly address the clients’ activity limitations. In addition, longer follow-up times are necessary.

Health-Related Quality of Life among People Applying for Housing Adaptations: Associated Factors

Housing adaptations (HA) clients are a heterogeneous group of people with disabilities experiencing restricted performance and participation in everyday life. While health-related quality of life is a common and relevant outcome in health care research, associated factors among HA clients are largely unknown. Thus, the aim of this study was to investigate which factors are associated with health-related quality of life among HA clients in Sweden. The study has a cross-sectional design, using baseline data collected among 224 participants in three municipalities in Sweden. The main outcome was health-related quality of life measured by the EQ-5D. Factors investigated as potentially associated were age, sex, living conditions, cognitive impairment, usability of the home, activities of daily living (ADL) dependence, participation, and fear of falling. The associations were explored using multiple linear regression analysis. Younger age and higher dependence in ADL were associated with lower scores on the EQ-5D. The social aspect of usability in the home had a positive association with the EQ VAS. Results suggest that certain groups of HA clients might be at risk for low health-related quality of life. Knowledge of their characteristics can potentially improve development and implementation of tailored interventions aiming at increasing their health-related quality of life.