Engagement in occupations in persons with Multiple Sclerosis

The overall aim of this thesis was to increase our knowledge of engagement in occupations in persons with Multiple Sclerosis (MS) in order to develop client-centred occupational therapy and rehabilitation. In study I, observations of the performance of self-care and household occupations were pursued in 44 participants, and study II identified self-perceived problems in performance of occupations in 47 participants. In studies III and IV, in-depth interviews with ten participants revealed experiences related to engagement in occupations and to the process of adaptation of engagement in occupations. The results showed that persons with MS can perceive problems related to all areas of occupations, and at different hierarchical levels. They can be dissatisfied with performance in occupations, especially related to self-care and household occupations and observational assessments confirm that performance in these occupations is impacted on. Furthermore, they can be independent in self-care but dependent in household occupations, and can have problems in their performance regardless of their age, disease severity, or their living arrangements. They can experience that they need to struggle continuously to manage occupations, and that this changes them as a person and make them live their lives differently than they had anticipated. In addition, they experience their adaptation of engagement in occupations as an ongoing, non-linear process, involving both themselves and their family, and they consider who would benefit the most, before they choose their adaptation of engagement in occupations. In summary, this thesis has shown that engagement in occupations in persons with MS is a complex phenomenon. All areas of occupations can be affected, and need to be addressed within occupational therapy and rehabilitation. Clients’ own experiences needs to be elucidated in order to facilitate the reconstruction of self, identity and support the process of adaptation of occupations

Self-perceived performance and satisfaction with performance of daily activities in persons with multiple sclerosis following interdisciplinary rehabilitation.

Abstract Purpose: To assess self-perceived performance and satisfaction with performance of daily activities in persons with multiple sclerosis (MS) on admission to and at discharge from interdisciplinary rehabilitation. Method: A retrospective study with a pre-post design. Twenty-seven women and 16 men with MS (mean age 51 years; median EDSS 6.5) participated in an individualised, goal-oriented, interdisciplinary, rehabilitation programme (average length 4 weeks). The Canadian Occupational Performance Measure (COPM) was used on admission to rehabilitation and at discharge. Results: On admission, the persons prioritised 216 activities that they perceived difficult to perform (mean number 3, range 2-8). Of these, 136 (63%) were in the COPM area of self-care, 52 (24%) in productivity and 28 (13%) in leisure. The lowest mean ratings of performance were found in the subgroups active recreation, community management and socialisation, and for satisfaction in the subgroup socialisation. For about 60% of the 216 prioritised activities, ratings of COPM performance as well as satisfaction were higher at discharge than on admission. For 18 (42%) and 24 (56%) persons, respectively, the mean change scores of performance and of satisfaction were equal to or greater than 2.0 at discharge, indicating a clinically significant change. Conclusions: Persons with MS can experience problems with all types of daily activities upon admission to rehabilitation, but also perceive improvements in their performance and satisfaction with performance in these activities at discharge from rehabilitation. Using patient-reported outcome measures, such as the COPM, may contribute to a broader understanding of the benefits of interdisciplinary rehabilitation in persons with MS. Implications for Rehabilitation Persons with MS can perceive problems with all types of daily activities which have to be considered during interdisciplinary rehabilitation. Following interdisciplinary rehabilitation, persons with MS can perceive improvements in their performance and satisfaction with performance in all types of daily activities. Patient-reported outcome measures can contribute to a broader understanding of the benefits of interdisciplinary rehabilitation in persons with MS

Psychometric properties of the Swedish version of the General Self-Efficacy Scale in stroke survivors.

The aim of this study was to assess the psychometric properties of a Swedish version of the General Self-Efficacy Scale (GSE) in stroke survivors. The GSE was administered by the same assessor on two occasions 3 weeks apart with 34 stroke survivors (21 men, 13 women; mean age=68.1 years) 6-10 months after stroke. Psychometric properties including targeting and scaling assumptions, and several reliability indices, were calculated. The mean score was well above the midpoint of the scale and the total scores spanned almost the entire scale range. Floor and ceiling effects were within the limits of 15-20% for total scores (0 and 8.8%, respectively), but not for each item individually. Total skewness was estimated at -1.02 and skewness for individual items was estimated as -1.55 to -0.33. The corrected item-total correlations were all above 0.3, except for one item. Cronbach's α was high (0.92) and the test-retest reliability was acceptable (intraclass correlation coefficient2,1=0.82). The mean difference (đ) was -0.68 (NS). The SEM was 2.97 (SEM%; 9.40). In conclusion, although targeting in relation to skewness and ceiling effects was observed in some items, the GSE was reliable for use in mobile stroke survivors 6-10 months after stroke

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

Purpose: The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.Material and methods: A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.Results: The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.Conclusions: The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered. Implications for rehabilitation Apps can be used for self-management if they are safe and can be trusted. People with neurological disabilities want to be involved in their healthcare and needs to be addressed by health care professionals. The use of apps grasp over a wide variety of areas this is something that may be considered in health care and something that can be addressed by interdisciplinary approaches. Ordinary health-oriented apps and disease-specific apps were used differently and for different purposes

IMAGINE study protocol of a clinical trial: a multi-center, investigator-blinded, randomized, 36-month, parallel-group to compare the effectiveness of motivational interview in rehabilitation of older stroke survivors

Background: Rehabilitation pathways are crucial to reduce stroke-related disability. Motivational Interviewing (MI), as a person-centered complex intervention, aimed to empower and motivate, and could be a resource to improve rehabilitation outcomes for older stroke survivors. The IMAGINE project aims to assess the impact of MI, as a complement to standard geriatric rehabilitation, on functional improvement at 30 days after admission, compared to standard geriatric rehabilitation alone, in persons admitted to geriatric rehabilitation after a stroke. Secondary objectives include assessing the impact of MI on physical activity and performance, self-efficacy, safety, cost-utility, participants' experiences and functional status at 3 months. Methods: We will conduct a multicenter randomized clinical trial in three geriatric rehabilitation hospitals in Spain. Older adults after mild-moderate stroke without previous severe cognitive impairment or disability will be randomized into the control or intervention group (136 per group, total N = 272). The intervention group will receive 4 sessions of MI by trained nurses, including the design of a personalized rehabilitation plan agreed between stroke survivors and nurses based on stroke survivors´ goals, needs, preferences and capabilities. Main outcome will be the Functional Independence Measure (FIM). In-hospital physical activity will be measured through accelerometers and secondary outcomes using validated scales. The study includes a process evaluation and cost-utility analysis. Discussion: Final results are expected by end of 2020. This study will provide relevant information on the implementation of MI as a rehabilitation reinforcement tool in older stroke survivors. A potential reduction in post-stroke disability and dependence would increase person's health-related quality of life and well-being and reduce health and social care costs. IMAGINE has the potential to inform practice and policymakers on how to move forward towards shared decision-making and shared responsibilities in the vulnerable population of older stroke survivors

Performance of activities of daily living in multiple sclerosis.

Purpose: To assess the performance of activities of daily living (ADL) in individuals with moderate to severe multiple sclerosis (MS). Method: A total of 12 men and 32 women with MS ( Expanded Disability Status Scale, EDSS, 6.0-8.5) were studied. The performance of personal ADL (P-ADL) and instrumental ADL (I-ADL) was assessed with the Functional Independence Measure (FIM) and the Assessment of Motor and Process Skills (AMPS). Results: Twenty-four of the 44 individuals were rated dependent in P-ADL by the FIM motor score, mainly due to limitations in some areas of self-care and in transfers and locomotion. Only three individuals were rated dependent by the FIM cognitive score, indicating no or little cognitive disability. Two thirds of the individuals who were rated independent/modified independent in P-ADL by the FIM were rated dependent in I-ADL by the AMPS. Only the FIM motor score was significantly related to the EDSS score, indicating that ADL performance and disease severity is weakly related. Conclusions: Moderate to severe MS reduces the ability to perform both P-ADL and I-ADL. An individual with MS can be independent in P-ADL but still unable to perform I-ADL satisfactorily. Assessments of both P-ADL and I-ADL are advocated to evaluate ADL performance in order to implement appropriate management strategies for individuals with MS

The complexity of daily occupations in multiple sclerosis.

The aims of this study were to describe which self-care, productivity, and leisure occupations individuals with multiple sclerosis (MS) perceive as difficult to perform on admission to rehabilitation and the individuals' own perception of the importance of, performance of, and satisfaction with these occupations. Whether the reported self-care, productivity, and leisure occupations were related to sex, age, disease severity, and living arrangements was also investigated. Forty-seven men and women (mean age 49.4 years) were assessed with the Canadian Occupational Performance Measure (COPM) on admission to rehabilitation. The individuals reported 366 occupations (median 8, range 3-15), which were categorized as self-care (51%), productivity (30%), and leisure (19%). Three COPM subcategories—household management (26%), personal care (21%), and functional mobility (20%)—accounted for two-thirds of the reported occupations. All prioritized occupations (n=238; (median 5, range 2-7) had high ratings for importance and the ratings for performance and satisfaction were generally low. Men reported significantly more occupations related to self-care than women, but no significant difference between the sexes could be found for productivity and leisure. No significant differences between the occupational areas were found when age, disease severity, or/and living arrangements were included in the analysis. In conclusion, individuals with MS perceive difficulties with occupations related to all aspects of daily life. This underscores the need to use assessment tools that capture the complexity of daily occupations

Occupations that People with Late Effects of Polio Perceive Difficult to Perform

The aims of this study were to describe which occupations that people with late effects of polio perceive difficult to perform, which occupational area the occupations were related to and their level of complexity. The aims were also to describe their own perception of the importance, performance and satisfaction with these occupations. Sixty-two participants (mean age 61years) were assessed with the Canadian Occupational Performance Measure. A total of 431 occupations were reported (43% self-care, 32% productivity and 25% leisure). Two subcategories, household management (27 %) and functional mobility (23 %), represented half of all the reported occupations. Ratings for prioritized occupations (N=300) were high for importance and generally low for performance and satisfaction. A wide variety of occupations were reported, related to both occupational areas and different levels of complexity within an occupational area. The results underscore the importance of using assessment tools that can capture both the variety and complexity of occupations. By obtaining more detailed information about occupations that people with late effects of polio perceive difficult to perform, this will enable occupational therapists to offer targeted interventions that can facilitate engagement in meaningful and purposeful occupations. A larger and more heterogeneous sample may enable the results to be generalized to more people with late effects of polio. Future studies should focus on methods that can facilitate engagement in meaningful and purposeful occupations for people with late effects of polio. Copyright (c) 2014 John Wiley & Sons, Ltd

The rehabilitation plan can support clients' active engagement and facilitate the process of change - experiences from people with late effects of polio participating in a rehabilitation programme

Purpose: To explore how the rehabilitation plan influences the rehabilitation process and its outcome in people with late effects of polio participating in an individualised goal-oriented interdisciplinary rehabilitation programme. Methods: Four women and two men with late effects of polio were interviewed before rehabilitation, at discharge, and at follow-up. Data were analysed according to the constant comparative method of grounded theory. Findings: The participants' experiences formed one core category: The same starting point but different rehabilitation processes. Before rehabilitation, all participants experienced a similar starting point: Naive understanding of rehabilitation. During rehabilitation, two separate processes followed. Four participants experienced their rehabilitation as being a mutually shared process that led to a process of change. They were actively engaged, using the rehabilitation plan, and working towards goals targeting a broad perspective of daily activities. The remaining two participants experienced their rehabilitation as a staff-directed process, with limited use of the rehabilitation plan, focusing on goals mainly related to body functions and self-care, not leading to any substantial changes. Conclusion: When clients experience that they develop a mutually shared rehabilitation process, based on a rehabilitation plan, they became more engaged in their rehabilitation and gained a better understanding of their participation during the process. Knowledge of the differences in how clients use the rehabilitation plan during the rehabilitation process can support their active engagement during rehabilitation. This, in turn, can promote a more holistic view among clients and professionals during the rehabilitation for people with late effects of polio