Gunilla Eriksson

OCCUPATIONAL GAPS IN EVERYDAY LIFE 1 /4 YEARS AFTER ACQUIRED BRAIN INJURY

OBJECTIVE To explore adaptation, by examining the occupational gaps occurring between what individuals want to do and what they actually do in terms of their everyday activities before and after brain injury. In addition, the relationships between occupational gaps and impairment/activity limitations and the time lapse since the brain injury were explored. DESIGN A cross-sectional study. SUBJECTS A total of 187 persons, affected by traumatic brain injury or subarachnoid haemorrhage 1-4 years previously. METHODS A postal questionnaire encompassing questions concerning gaps in the performance of activities in everyday life before and after the brain injury and perceived impairment/activity limitations. RESULTS The numbers of occupational gaps increased after the injury, with the number of gaps having increased from 46% to 71%. The number of occupational gaps was significantly related to executive impairment/activity limitations, and motor impairment/activity limitations and other somatic impairments, such as headache, also had an impact. The time lapse since the brain injury had no significant effect on the number of occupational gaps. CONCLUSION The results suggests that there is a need for adaptation in everyday activities, even several years after a brain injury, which indicates that follow-up and access to individualized rehabilitation interventions in the long-term are required.

A client-centred ADL intervention : three-month follow-up of a randomized controlled trial

Abstract Objective: The aim was to study a client-centred activities of daily living (ADL) intervention (CADL) compared with the usual ADL intervention (UADL) in people with stroke regarding: independence in ADL, perceived participation, life satisfaction, use of home-help service, and satisfaction with training and, in their significant others, regarding: caregiver burden, life satisfaction, and informal care. Methods: In this multicentre study, 16 rehabilitation units were randomly assigned to deliver CADL or UADL. The occupational therapists who provided the CADL were specifically trained. Eligible for inclusion were people with stroke treated in a stroke unit ≤3 months after stroke, dependent in ≥two ADL, not diagnosed with dementia, and able to understand instructions. Data were collected at inclusion and three months thereafter. To detect a significant difference between the groups in the Stroke Impact Scale (SIS) domain “participation”, 280 participants were required. Intention-to-treat analysis was applied. Results: At three months, there was no difference in the outcomes between the CADL group (n = 129) and the UADL group (n = 151), or their significant others (n = 87/n = 93) except in the SIS domain “emotion” in favour of CADL (p = 0.04). Conclusion: The CADL does not appear to bring about short-term differences in outcomes and longer follow-ups are required.

Complex negotiations : The lived experience of enacting agency after a stroke

Abstract Objective: This qualitative, longitudinal, descriptive study aimed to understand the lived experience of enacting agency, and to describe the phenomenon of agency and the meaning structure of the phenomenon during the year after a stroke. Agency is defined as making things happen in everyday life through one’s actions. Methods: This study followed six persons (three men and three women, ages 63 to 89), interviewed on four separate occasions. Interview data were analysed using the Empirical Phenomenological Psychological method. Results: The main findings showed that the participants experienced enacting agency in their everyday lives after stroke as negotiating different characteristics over a span of time, a range of difficulty, and in a number of activities, making these negotiations complex. The four characteristics described how the participants made things happen in their everyday lives through managing their disrupted bodies, taking into account their past and envisioning their futures, dealing with the world outside themselves, and negotiating through internal dialogues. Conclusions: This empirical evidence regarding negotiations challenges traditional definitions of agency and a new definition of agency is proposed. Understanding clients’ complex negotiations and offering innovative solutions to train in real-life situations may help in the process of enabling occupations after a stroke.

A cross-diagnostic validation of an instrument measuring participation in everyday occupations: The Occupational Gaps Questionnaire (OGQ)

Abstract The aim of this study was to validate the Occupational Gaps Questionnaire (OGQ) when used in samples of people with acquired brain injuries (ABI), stroke, stress-related disorders, concussion, and persons receiving rehabilitation after ABI to investigate whether the OGQ could be used as a generic scale. A total of 601 individuals answered the OGQ at various time points after illness/injury. A Rasch analysis was performed on the data to evaluate evidence of internal scale validity and person response validity, and the capability of the OGQ to separate people into different levels of participation in everyday occupations. The results provided evidence that the OGQ is a valid measure across different diagnostic groups. A generic version of the OGQ can separate at least two levels of perceived occupational gaps and is therefore recommended as a screening tool to be used by occupational therapists working with different diagnostic groups.

Occupational Gaps in Everyday Life One Year After Stroke and the Association With Life Satisfaction and Impact of Stroke

Abstract Purpose: To examine the presence, frequency, and distribution of occupational gaps and to explore whether there are associations between occupational gaps and life satisfaction, self-rated recovery, and functioning and participation in activities of daily living (ADLs) 1 year after stroke. Method: Data were collected at onset and at 12 months after stroke from 161 patients admitted to a stroke unit in central Sweden by using Occupational Gaps Questionnaire, LiSat-11, Stroke Impact Scale, Katz ADL Index, and Barthel Index. Spearman rank correlation and Mann Whitney U test were used in the analyses. Results: Occupational gaps were reported by 87% of the participants. The number of occupational gaps was moderately associated with participation and self-rated recovery. There was a significant difference in the number of occupational gaps between the participants who were independent in ADLs and those who were not, both at baseline and at 12 months after stroke. There was, however, no significant association between occupational gaps and life satisfaction. Conclusions: Occupational gaps 1 year after stroke are very common, particularly among individuals experiencing difficulties in ADLs. Increased efforts are vital to enable individuals to do the activities that are important to them, irrespective of whether these are instrumental ADLs or leisure or social activities. Occupational gaps could be reduced by developing rehabilitation interventions that enable desired activities in different contexts that are crucial for individual patients.

PERCEIvEd oCCuPATIoNAl GAPS oNE yEAR AFTER STRokE: AN ExPloRATIvE STudy

OBJECTIVE To explore and describe factors associated with occupational gaps and to identify factors at 3 months that predict occupational gaps one year post-stroke. A gap, a restriction in participation, is considered to be present when there is a discrepancy between what the individual wants to do and what they actually do in everyday life. DESIGN Prospective longitudinal study. SUBJECTS Two hundred persons with stroke. METHODS Data from the Occupational Gaps Questionnaire, one year post-stroke, was used as the dependent variable in 3- and 12-month regression analyses. Domains of the Stroke Impact Scale, global life satisfaction, demographic and medical factors were used as independent variables. RESULTS At 3 months, activities of daily living abilities, social participation and not being born in Sweden predicted occupational gaps at 12 months. Stroke severity and not being born in Sweden and 3 factors at 12 months: social participation, self-rated recovery, and global life satisfaction were associated with occupational gaps. CONCLUSION Activities of daily living ability at 3 months predicted occupational gaps after stroke. Thus, it is possible to identify early on, and provide interventions for, those that risk participation restrictions. Not being born in the country might be an indicator of a risk for participation restrictions.

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.

Perceived participation after stroke: the influence of activity retention, reintegration, and perceived recovery.

OBJECTIVE We sought to determine the extent to which perceptions of participation in everyday occupations were affected in a sample of people with predominantly mild stroke. Demographic variables, stroke severity, community integration, participation in everyday occupations, and perceptions of recovery were examined as potential contributors to their perceptions of participation. METHOD We conducted a cross-sectional study with 116 people with mild to moderate first stroke assessed approximately 6 mo after stroke. RESULTS Perceptions of participation assessed using the Stroke Impact Scale varied (range = 19-100), with a mean score of 82. Regression analyses revealed three factors that contributed to perceptions of participation: retention of previous activities, reintegration in home and community, and perception of stroke recovery. CONCLUSION Although the majority of participants reported a high level of perceived participation, more than a third failed to report successful participation.

Self-Reported Fatigue and Associated Factors Six Years after Stroke

Several studies have found that fatigue is one of the most commonly reported symptoms after stroke and the most difficult to cope with. The present study aimed to investigate the presence and severity of self-reported fatigue six years after stroke onset and associated factors. The cohort “Life After Stroke Phase I” (n = 349 persons) was invited at six years to report fatigue (Fatigue Severity Scale 7-item version), perceived impact of stroke and global recovery after stroke (Stroke Impact Scale), anxiety and depression (Hospital Anxiety and Depression Scale), life satisfaction (Life Satisfaction Checklist) and participation in everyday social activities (Frenchay Activities Index). At six years 37% of the 102 participants in this cross-sectional study reported fatigue. The results showed that in nearly all SIS domains the odds for post-stroke fatigue were higher in persons with a higher perceived impact. Furthermore, the odds for post-stroke fatigue were higher in those who had experienced a moderate/severe stroke and had signs of depression and anxiety. Fatigue is still present in one-third of persons as long as six years after stroke onset and is perceived to hinder many aspects of functioning in everyday life. There is an urgent need to develop and evaluate interventions to reduce fatigue.

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.