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2.
  • Elf, Lena Marie, 1962, et al. (author)
  • Developing a model of a Stroke Care Process
  • 2009
  • In: Online Journal of Nursing Informatics. - 1089-9758. ; 13:3, s. 1-34
  • Journal article (peer-reviewed)abstract
    • Aim. The paper presents the development and structure of a generic stroke care simulation model, used in designing of a stroke unit in Sweden. Background and rationale. Designing new health care spaces is a multifaceted process; requiring multi-professional (nurses, other healthcare professionals, building planners and architects) involvement. To secure that the patients’ interest are in focus the different stakeholders need to analyze and develop a common understanding of the care processes that are to take place in the new space. Modeling and simulation is one significant method, making it possible to depict the dynamic structure of the system and experiment with the model, asking “what – ifs” questions. Methods. System dynamics, a modeling method was used to develop the model. The iterative and group-modeling process included development of a quantified model (with a multi-professional design team, based on evidence from the literature, and a survey from stroke care experts), and validation of the model. Results. The dynamic care model developed included variables that are essential in modern care, such as patient-participation, care-planning, and teamwork. Conclusion. The presented generic model provides a framework for exploring, comprehending, and communicating complex ideas about stroke care.
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3.
  • Garcia-Ptacek, Sara, et al. (author)
  • Prestroke Mobility and Dementia as Predictors of Stroke Outcomes in Patients Over 65 Years of Age : A Cohort Study From The Swedish Dementia and Stroke Registries
  • 2018
  • In: Journal of the American Medical Directors Association. - Hagerstown, Maryland : Lippincott Williams & Wilkins. - 1525-8610 .- 1538-9375. ; 19:2, s. 154-161
  • Journal article (peer-reviewed)abstract
    • OBJECTIVES: To explore the association between prestroke mobility dependency and dementia on functioning and mortality outcomes after stroke in patients>65 years of age.DESIGN: Longitudinal cohort study based on SveDem, the Swedish Dementia Registry and Riksstroke, the Swedish Stroke Registry.PARTICIPANTS: A total of 1689 patients with dementia >65 years of age registered in SveDem and suffering a first stroke between 2007 and 2014 were matched with 7973 controls without dementia with stroke.MEASUREMENTS: Odds ratios (ORs) and 95% confidence intervals (CIs) for intrahospital mortality, and functioning and mortality outcomes at 3 months were calculated. Functioning included level of residential assistance (living at home without help, at home with help, or nursing home) and mobility dependency (independent, needing help to move outdoors, or needing help indoors and outdoors).RESULTS: Prestroke dependency in activities of daily living and mobility were worse in patients with dementia than controls without dementia. In unadjusted analyses, patients with dementia were more often discharged to nursing homes (51% vs 20%; P < .001). Mortality at 3 months was higher in patients with dementia (31% vs 23% P < .001) and fewer were living at home without help (21% vs 55%; P < .001). In adjusted analyses, prestroke dementia was associated with higher risk of 3-month mortality (OR 1.34; 95% CI 1.18-1.52), requiring a higher level of residential assistance (OR 4.07; 3.49-.75) and suffering from more dependency in relation to mobility (OR 2.57; 2.20-3.02). Patients with dementia who were independent for mobility prestroke were more likely to be discharged to a nursing home compared with patients without dementia with the same prestroke mobility (37% vs 16%; P < .001), but there were no differences in discharge to geriatric rehabilitation (19% for both; P = .976). Patients, who moved independently before stroke, were more often discharged home (60% vs 28%) and had lower mortality. In adjusted analyses, prestroke mobility limitations were associated with higher odds for poorer mobility, needing more residential assistance, and death.CONCLUSIONS: Patients with mobility impairments and/or dementia present a high burden of disability after a stroke. There is a need for research on stroke interventions among these populations.
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4.
  • Hoang, Minh Tuan, et al. (author)
  • Costs of Inpatient Rehabilitation for Ischemic Stroke in Patients with Dementia : A Cohort Swedish Register-Based Study
  • 2020
  • In: Journal of Alzheimer's Disease. - Amsterdam, Netherlands : IOS Press. - 1387-2877 .- 1875-8908. ; 73:3, s. 967-979
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: Stroke and dementia are frequent comorbidities. Dementia possibly increases total costs of stroke care, especially cost of institutionalization and informal medical care. However, stroke rehabilitation costs in dementia patients are understudied.OBJECTIVE: To estimate inpatient stroke rehabilitation costs for Swedish dementia patients in comparison with non-dementia patients.METHODS: A longitudinal cohort study with linked data from the Swedish Dementia Register and the Swedish Stroke Register was conducted. Patients diagnosed with dementia who suffered a first ischemic stroke between 2010 and 2014 (n = 138) were compared with non-dementia patients (n = 935). Cost analyses were conducted from a Swedish health care perspective. The difference of rehabilitation costs between the two groups was examined via simple linear regression (before and after matching by propensity scores of dementia) and multiple linear regression.RESULTS: Mean inpatient rehabilitation costs for dementia and non-dementia patients were SEK 103,693/$11,932 and SEK 130,057/$14,966, respectively (median SEK 92,183/$10,607 and SEK 106,365/$12,239) (p = 0.001). Dementia patients suffered from more comorbidities and experienced lower functioning, compared to non-dementia patients. The inpatient rehabilitation cost for patients with known dementia was 0.84 times the cost in non-dementia individuals.CONCLUSION: Dementia diagnosis was significantly associated with lower inpatient stroke rehabilitation costs. This might be explained by physicians' beliefs on the limited effectiveness of rehabilitation in dementia patients. Further research on cost-effectiveness of stroke rehabilitation and patients' satisfaction with stroke rehabilitation is necessary.
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5.
  • Marcheschi, Elizabeth, 1980, et al. (author)
  • Home setting after stroke, facilitators and barriers: a systematic literature review
  • 2018
  • In: Health and Social Care in the Community. - : Hindawi Limited. - 1365-2524 .- 0966-0410. ; 26:4, s. e451-e459
  • Research review (peer-reviewed)abstract
    • This paper seeks to improve the understanding of the interaction between patients with stroke and the physical environment in their home settings. Stroke care is increasingly performed in the patient’s home. Therefore, a systematic review was conducted to identify the existing knowledge about facilitators and barriers in the physical environment of home settings for the stroke rehabilitation process. Based upon Arksey and O’Malley’s framework, a Boolean search strategy was performed in the databases; CINAHL, Medline, Web of Science and Scopus. Fifteen articles were retained from the literature search conducted between August and November 2016, and two researchers independently assessed their quality based on the Swedish Council on Health Technology Assessment guidelines. The results suggest that despite the healthcare system’s ongoing shift towards home-based rehabilitation, the role played by the physical environment of home settings is still considered a side finding. Moreover, the research appears to focus mainly on how this environment supports mobility and activities of daily living, whereas information regarding the psychosocial and emotional processes that mediate the interaction between stroke survivors and their home setting are missing. A lack of information was also found with regard to the influence of different geographic locations on the stroke rehabilitation process. Future investigations are therefore needed to advance the understanding of the role played by the physical environment of home settings in supporting stroke recovery.
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6.
  • Minh, Tuan, et al. (author)
  • Satisfaction with Stroke Care Among Patients with Alzheimer's and Other Dementias : A Swedish Register-Based Study
  • 2021
  • In: Journal of Alzheimer's Disease. - : IOS Press. - 1387-2877 .- 1875-8908. ; 79:2, s. 905-916
  • Journal article (peer-reviewed)abstract
    • Background: Patient dissatisfaction with stroke care is associated with poor self-rated health and unmet care needs. Dementia patients' satisfaction with stroke care is understudied.Objective: To compare satisfaction with stroke care in patients with and without dementia.Methods: This longitudinal cohort study included 5,932 dementia patients (2007-2017) who suffered a first stroke after dementia diagnosis and 39,457 non-dementia stroke patients (2007-2017). Data were retrieved by linking the Swedish Stroke Register, the Swedish Dementia Register, the Swedish National Patient Register, and the Swedish Prescribed Drug Register. The association between dementia and satisfaction was analyzed with ordinal logistic regression.Results: When dementia patients answered themselves, they reported significantly lower odds of satisfaction with acute stroke care (OR: 0.71; 95% CI: 0.60-0.85), healthcare staff's attitude (OR: 0.79; 95% CI: 0.66-0.96), communication with doctors (OR: 0.78; 95% CI: 0.66-0.92), stroke information (OR: 0.62; 95% CI: 0.52-0.74); but not regarding inpatient rehabilitation (OR: 0.93; 95% CI: 0.75-1.16), or outpatient rehabilitation (OR: 0.93; 95% CI: 0.73-1.18). When patients answered with caregivers' help, the association between dementia status and satisfaction remained significant in all items. Subgroup analyses showed that patients with Alzheimer's disease and mixed dementia reported lower odds of satisfaction with acute care and healthcare staff's attitude when they answered themselves.Conclusion: Patients with dementia reported lower satisfaction with stroke care, revealing unfulfilled care needs among dementia patients, which are possibly due to different (or less) care, or because dementia patients require adaptations to standard care.
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7.
  • Åkerblom, Ylva, 1967- (author)
  • Experiences of pain and associations between pain, disease severity and individual quality of life in people with motor neuron diseases
  • 2019
  • Licentiate thesis (other academic/artistic)abstract
    • Many people with the incurable and often times fatal motor neuron diseases have pain, but there is lack of knowledge about people’s experiences of living with pain. Further, the correlation between pain and their quality of life is not well understood, and previous studies have not used individual quality of life, namely that people with their own words express what quality of life is.   The aim of these studies was to explore the experiences of pain and the association between pain and quality of life in people with MND.Methods: Study I was explorative about the individual experience of pain, while study II was correlational between pain, pain severity, disease severity and IQOL. Study I was qualitative, whereas study II used both qualitative and quantitative analysis.Results and conclusions: People with motor neuron diseases experienced pain to have multiple characteristics and impact. However, the results emphasise that the individual experienced some pain characteristics as difficult and that pain could worsen functions that were already affected by the disease. The experience was also that it could be challenging to manage pain. However, the symptom of pain could pass unnoticed in contacts with healthcare professionals (study I). The three most important areas for individual quality of life in both participants with and without pain were: Social relations, followed by Activities for amusement and relaxations, and Being in the outdoor environment. Individual quality of life was noticed to be good regardless of pain. Pain and pain severity were not found to be associated with satisfaction of individual quality of life in patients with motor neuron diseases, neither was disease severity. The results support previous findings, that strong associations between symptoms of MND and IQoL are not obvious. However, this does not infer that pain in people with MNDs should be neglected and undertreated. On the contrary, it seems to be important for healthcare to pay more attention to pain in people with motor neuron diseases and that pain continuously is measured, individually treated and followed. Regardless of whether persons with MND have pain or not, the results point to the importance of healthcare professionals providing support to not only the patient but also the patient’s family and friends, as well as assisting in various forms of relaxing activities and possibility of being in the outdoor environment.
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8.
  • Amare, Azmeraw, et al. (author)
  • Association of Polygenic Score and the involvement of Cholinergic and Glutamatergic Pathways with Lithium Treatment Response in Patients with Bipolar Disorder.
  • 2023
  • In: Research square. - : Research Square Platform LLC.
  • Journal article (peer-reviewed)abstract
    • Lithium is regarded as the first-line treatment for bipolar disorder (BD), a severe and disabling mental disorder that affects about 1% of the population worldwide. Nevertheless, lithium is not consistently effective, with only 30% of patients showing a favorable response to treatment. To provide personalized treatment options for bipolar patients, it is essential to identify prediction biomarkers such as polygenic scores. In this study, we developed a polygenic score for lithium treatment response (Li+PGS) in patients with BD. To gain further insights into lithium's possible molecular mechanism of action, we performed a genome-wide gene-based analysis. Using polygenic score modeling, via methods incorporating Bayesian regression and continuous shrinkage priors, Li+PGS was developed in the International Consortium of Lithium Genetics cohort (ConLi+Gen: N=2,367) and replicated in the combined PsyCourse (N=89) and BipoLife (N=102) studies. The associations of Li+PGS and lithium treatment response - defined in a continuous ALDA scale and a categorical outcome (good response vs. poor response) were tested using regression models, each adjusted for the covariates: age, sex, and the first four genetic principal components. Statistical significance was determined at P<����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������.
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9.
  • Amare, Azmeraw T, et al. (author)
  • Association of polygenic score and the involvement of cholinergic and glutamatergic pathways with lithium treatment response in patients with bipolar disorder.
  • 2023
  • In: Molecular psychiatry. - 1476-5578. ; 28, s. 5251-5261
  • Journal article (peer-reviewed)abstract
    • Lithium is regarded as the first-line treatment for bipolar disorder (BD), a severe and disabling mental healthdisorder that affects about 1% of the population worldwide. Nevertheless, lithium is not consistently effective, with only 30% of patients showing a favorable response to treatment. To provide personalized treatment options for bipolar patients, it is essential to identify prediction biomarkers such as polygenic scores. In this study, we developed a polygenic score for lithium treatment response (Li+PGS) in patients with BD. To gain further insights into lithium's possible molecular mechanism of action, we performed a genome-wide gene-based analysis. Using polygenic score modeling, via methods incorporating Bayesian regression and continuous shrinkage priors, Li+PGS was developed in the International Consortium of Lithium Genetics cohort (ConLi+Gen: N=2367) and replicated in the combined PsyCourse (N=89) and BipoLife (N=102) studies. The associations of Li+PGS and lithium treatment response - defined in a continuous ALDA scale and a categorical outcome (good response vs. poor response) were tested using regression models, each adjusted for the covariates: age, sex, and the first four genetic principal components. Statistical significance was determined at P<0.05. Li+PGS was positively associated with lithium treatment response in the ConLi+Gen cohort, in both the categorical (P=9.8×10-12, R2=1.9%) and continuous (P=6.4×10-9, R2=2.6%) outcomes. Compared to bipolar patients in the 1st decile of the risk distribution, individuals in the 10th decile had 3.47-fold (95%CI: 2.22-5.47) higher odds of responding favorably to lithium. The results were replicated in the independent cohorts for the categorical treatment outcome (P=3.9×10-4, R2=0.9%), but not for the continuous outcome (P=0.13). Gene-based analyses revealed 36 candidate genes that are enriched in biological pathways controlled by glutamate and acetylcholine. Li+PGS may be useful in the development of pharmacogenomic testing strategies by enabling a classification of bipolar patients according to their response to treatment.
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10.
  • Anåker, Anna, et al. (author)
  • A comparative study of patients' activities and interactions in a stroke unit before and after reconstruction-The significance of the built environment
  • 2017
  • In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203 .- 1932-6203. ; 12:7, s. Article no e0177477-
  • Journal article (peer-reviewed)abstract
    • Early mobilization and rehabilitation, multidisciplinary stroke expertise and comprehensive therapies are fundamental in a stroke unit. To achieve effective and safe stroke care, the physical environment in modern stroke units should facilitate the delivery of evidence-based care. Therefore, the purpose of this study was to explore patients' activities and interactions in a stroke unit before the reconstruction of the physical environment, while in a temporary location and after reconstruction. This case study examined a stroke unit as an integrated whole. The data were collected using a behavioral mapping technique at three different time points: in the original unit, in the temporary unit and in the new unit. A total of 59 patients were included. The analysis included field notes from observations of the physical environment and examples from planning and design documents. The findings indicated that in the new unit, the patients spent more time in their rooms, were less active, and had fewer interactions with staff and family than the patients in the original unit. The reconstruction involved a change from a primarily multi-bed room design to single-room accommodations. In the new unit, the patients' lounge was located in a far corner of the unit with a smaller entrance than the patients' lounge in the old unit, which was located at the end of a corridor with a noticeable entrance. Changes in the design of the stroke unit may have influenced the patients' activities and interactions. This study raises the question of how the physical environment should be designed in the future to facilitate the delivery of health care and improve outcomes for stroke patients. This research is based on a case study, and although the results should be interpreted with caution, we strongly recommend that environmental considerations be included in future stroke guidelines.
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13.
  • Anåker, Anna, et al. (author)
  • “It’s Lonely”: Patients’ Experiences of the Physical Environment at a Newly Built Stroke Unit
  • 2019
  • In: HERD. - : SAGE Publications. - 2167-5112 .- 1937-5867. ; 12:3, s. 141-152
  • Journal article (peer-reviewed)abstract
    • Objective: The aim of this study was to explore patients’ experiences of the physical environment at a newly built stroke unit. Background: For a person who survives a stroke, life can change dramatically. The physical environment is essential for patients’ health and well-being. To reduce infections, a majority of new healthcare facilities mainly have a single-room design. However, in the context of stroke care, knowledge of how patients experience the physical environment, particularly their experience of a single-room design, is scarce. Method: This study used a qualitative design. Patients (n = 16) participated in semistructured individual interviews. Data were collected in December 2015 and February 2017 in Sweden; interviews were transcribed verbatim and analyzed using content analysis. Results: Two main themes were identified: (i) incongruence exists between community and privacy and (ii) connectedness with the outside world provides distraction and a sense of normality. In single rooms, social support was absent and a sense of loneliness was expressed. Patients were positively distracted when they looked at nature or activities that went on outside their windows. Conclusions: The physical environment is significant for patients with stroke. This study highlights potential areas for architectural improvements in stroke units, primarily around designing communal areas with meeting places and providing opportunities to participate in the world outside the unit. A future challenge is to design stroke units that support both community and privacy. Exploring patients’ experiences could be a starting point when designing new healthcare environments and inform evidence-based design.
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14.
  • Anåker, Anna, et al. (author)
  • The physical environment and multi-professional teamwork in three newly built stroke units
  • 2020
  • In: Disability and Rehabilitation. - : Informa UK Limited. - 1464-5165 .- 0963-8288. ; , s. 1-9
  • Journal article (peer-reviewed)abstract
    • Purpose: To explore multi-professional teamwork in relation to the physical environment in three newly built or renovated stroke units. Materials and methods: An observational study was undertaken. The participants were all staff members of a multi-professional team working in the reviewed stroke units. The data were collected using behavioural mapping and semi-structured observations, and they were analysed by content analysis and descriptive statistics. Results: Out of all the observations in the behavioural mapping, very few were of two or more members from the team together with a patient. None of the included stroke units had a co-location for all the members of the multi-professional team. Three main categories emerged from the analysis of the interviews: (i) the hub of the unit; (ii) the division of places; and (iii) power imbalance. All the categories reflected the teamwork in relation to parts of the physical environment. Conclusion: The design of the physical environment is important for multi-professional teamwork. Emphasis must be placed on better understanding the impact of the physical environment and on incorporating the evidence related to multi-professional teamwork during the design of stroke units.IMPLICATIONS FOR REHABILITATION Understanding the link between the physical environment and effective teamwork can lead to more tailored and supportive design solutions. The design of the physical environment should be considered as a vital part of effective teamwork in stroke units. The physical environment should include shared workstations, allowing team members to meet and communicate face to face.
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15.
  • Anåker, Anna, et al. (author)
  • The physical environment and patients' activities and care. A comparative case study at three newly built stroke units
  • 2018
  • In: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 74
  • Journal article (peer-reviewed)abstract
    • AIM: To explore and compare the impact of the physical environment on patients' activities and care at three newly built stroke units.BACKGROUND: Receiving care in a stroke unit instead of in a general ward reduces the odds of death, dependency and institutionalized care. In stroke units, the design of the physical environment should support evidence-based care. Studies on patients' activities in relation to the design of the physical environment of stroke units are scarce.DESIGN: This work is a comparative descriptive case study.METHOD: Patients (N=55) who had a confirmed diagnosis of stroke were recruited from three newly built stroke units in Sweden. The units were examined by non-participant observation using two types of data collection: behavioral mapping analyzed with descriptive statistics and field note taking analyzed with deductive content analysis. Data were collected from April 2013 - December 2015.RESULTS: The units differed in the patients' levels of physical activity, the proportion of the day that patients spent with health professionals and family presence. Patients were more physically active in a unit with a combination of single and multi-bed room designs than in a unit with an entirely single room design. Stroke units that were easy to navigate and offered variations in the physical environment had an impact on patients' activities and care.CONCLUSIONS: Patients' activity levels and interactions appeared to vary with the design of the physical environments of stroke units. Stroke guidelines focused on health status assessments, avoidance of bed-rest and early rehabilitation require a supportive physical environment. 
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16.
  • Bergstrom, Aileen L., et al. (author)
  • Perceived occupational gaps one year after stroke : An explorative study
  • 2012
  • In: Journal of Rehabilitation Medicine. - Uppsala : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 44:1, s. 36-42
  • Journal article (peer-reviewed)abstract
    • 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.
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17.
  • Bergström, Aileen L., et al. (author)
  • Combined life satisfaction of persons with stroke and their caregivers : associations with caregiver burden and the impact of stroke
  • 2011
  • In: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 9, s. 1-
  • Journal article (peer-reviewed)abstract
    • Background: Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods: In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS). Results: The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions: Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.
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18.
  • Bergström, Aileen L., et al. (author)
  • Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3–6 months after onset
  • 2015
  • In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 47:6, s. 508-515
  • Journal article (peer-reviewed)abstract
    • Objective: To explore and describe persons with stroke and their caregivers' restrictions in participation in everyday occupations, i.e. occupational gaps, 3-6 months post-stroke, in relation to life satisfaction, combined life satisfaction, caregiver burden, perceived impact of stroke, and activities of daily living. Design: Cross-sectional study. Subjects: Persons with stroke and their caregivers (105 dyads). Methods: The Occupational Gaps Questionnaire, Life Satisfaction Checklist, Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used. Correlations were analysed with Spearman's rank, and regression analyses used life satisfaction as the dependent variable. Results: At least one person in 86% of the dyads perceived restrictions in participation, with the most common gap in travelling for pleasure. Correlations were low between the numbers of occupational gaps and life satisfaction (R=-0.33, R=-0.31); however, life satisfaction accounted for occupational gaps both for persons with stroke and for caregivers. A greater number of occupational gaps were perceived in the dyads with combined low levels of life satisfaction compared with those with combined high levels of life satisfaction. Conclusion: Participation in everyday occupations is related to life satisfaction even for caregivers of persons with stroke. The results of this study add to our knowledge about the stroke-caregiver dyad and will help to inform family-centred approaches within stroke rehabilitation.
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19.
  • Bertilsson, Ann-Sofie, et al. (author)
  • A client-centred ADL intervention: three-month follow-up of a randomized controlled trial
  • 2014
  • In: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 21, s. 377-391
  • Journal article (peer-reviewed)abstract
    • Objective: The aim was to study a client-centred activities of daily living (ADL) intervention (CADL) compared with the usualADL 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, lifesatisfaction, and informal care. Methods: In this multicentre study, 16 rehabilitation units were randomly assigned to deliverCADL or UADL. The occupational therapists who provided the CADL were specifically trained. Eligible for inclusion werepeople with stroke treated in a stroke unit £3 months after stroke, dependent in ‡two ADL, not diagnosed with dementia, andable to understand instructions. Data were collected at inclusion and three months thereafter. To detect a significant differencebetween the groups in the Stroke Impact Scale (SIS) domain “participation”, 280 participants were required. Intention-totreatanalysis 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” infavour of CADL (p = 0.04). Conclusion: The CADL does not appear to bring about short-term differences in outcomes andlonger follow-ups are required.
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20.
  • Bertilsson, Ann Sofie, et al. (author)
  • A cluster randomized controlled trial of a client-centred, activities of daily living intervention for people with stroke : One year follow-up of caregivers
  • 2016
  • In: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 30:8, s. 765-775
  • Journal article (peer-reviewed)abstract
    • 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.
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21.
  • Bertilsson, Ann-Sofie, et al. (author)
  • Client-centred ADL intervention after stroke : Significant others' experiences
  • 2015
  • In: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 22:5, s. 377-386
  • Journal article (peer-reviewed)abstract
    • Background: Client-centredness is a prominent contemporary concept in rehabilitation. However, there is a lack of knowledge on if and how a client-centred rehabilitation approach is incorporated in the everyday life of significant others of people who receive such rehabilitation. Objective: Explore and describe if and how a client-centred ADL intervention (CADL) was integrated in the everyday lives of significant others of people with stroke. Materials and methods: Qualitative longitudinal design, with a grounded theory approach. Seven significant others, who cohabited with persons receiving a CADL intervention, were interviewed during the first year. Findings: One core category was identified: "Taking responsibility and achieving balance with respect to self-esteem in order to get on with everyday life". The integration of the CADL was a process. A key aspect was that as the person with stroke acted upon his/her own desired activity goals the significant others were encouraged to act on their own needs. Conclusions: Enablement is important also for the significant others of people with stroke. One way of enabling significant others to maintain an active lifestyle and find respite in everyday life might be to enable people with stroke to formulate and act upon their desired activity goals.
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22.
  • Bråndal, Anna, 1966- (author)
  • Rehabilitation after stroke with focus on early supported discharge and post-stroke fatigue
  • 2016
  • Doctoral thesis (other academic/artistic)abstract
    • Background Stroke is a major cause of disability worldwide. After treatment in a specialized stroke unit, early supported discharge (ESD) followed by home rehabilitation has shown to be an effective way to improve patient outcome and quality of care for persons with mild to moderate stroke. ESD service is recommended in the national and international guidelines for stroke care, but has only partially been implemented in Sweden. Following stroke, fatigue is a common consequence that often becomes more evident when the patient comes home. Currently, there is insufficient evidence about how to measure, treat and handle post-stroke fatigue. The overall aim of this thesis was to evaluate and implement early supported discharge (ESD) based on stroke patients experience after discharge from the stroke unit and local conditions. The aim was also to evaluate post-stroke fatigue with a potentially valid and reliable scale and finally to prepare for a study to evaluate cardiorespiratory training as a part of ESD service for patients with post-stroke fatigue.Methods In paper I, nine strategically chosen patients were interviewed of their experience of falling ill, the hospital stay, discharge, contact with health care after discharge and their request of support. Papers II-III describe and evaluate the development, content, implementation and effects of a locally adopted method for early supported discharge (Umeå Stroke Center ESD) in modern stroke care. Paper II included 153 consecutive patients and paper III, 30 232 patients with first-ever stroke registered in the Riksstroke registry in Sweden. Paper II evaluated number of patients/year, clinical and functional health status, satisfaction in relation to needs, accidental falls/other injuries and resources with the result summarized in a value compass. The implementation process was evaluated retrospectively by means of Consolidated Framework for Implementation (CFIR). Paper III evaluated patient reported outcome measurements (PROMs) at 3 months. The primary outcome in paper III was satisfaction with the rehabilitation after discharge. Secondary outcomes were information about stroke provided, tiredness/fatigue, pain, dysthymia/depression, general health status and dependence in activities of daily living (mobility, toilet hygiene and dressing). Multivariable logistic regression models for each PROM was used to analyze associations between PROMs and ESD/no ESD. In Paper IV, the Fatigue Assessment scale (FAS) was translated into Swedish and evaluated regarding psychometric properties when self-administered by persons with mild to moderate stroke. 72 consecutively patients selected from the stroke unit admission register received a letter including three questionnaires: the FAS, the Short Form Health Survey (SF-36) subscale for vitality and the Geriatric Depression Scale GDS-15. A second letter with FAS was sent within 2 weeks, for re-test evaluation. Paper V is a study protocol for a planned randomized controlled trial (RCT) of 50 consecutive stroke patients will who receive stroke unit care followed by ESD-service at Umeå Stroke Center, University Hospital, Umeå, Sweden. Paper V will investigate if a structured cardiorespiratory interval training program (CITP) added to the ESD-service may result in relieved post-stroke fatigue and increased oxygen uptake.Results The interviews in Paper I revealed three main categories with subcategories: “Responsible and implicated”, “Depersonalized object for caring measures” and “The striving for repersonalization and autonomy”. The findings indicate that coming home gave the informants’ important insights and understanding of the stroke, its consequences and was also an important factor for the recovery. Paper II-III showed that it is possible to develop and implement an adapted ESD service for stroke patients based on the patients’ experiences and requests, evidence-based recommendations and local conditions. The ESD service reduced dependence of activity, increased mobility with seemingly no increased risk of accidental falls or other injuries. The patient satisfaction in relation to needs regarding the ESD was high. Paper III showed that patients that received ESD were more satisfied with rehabilitation after discharge, had less need for assistance with ADL and less dysthymia/depression compared to patients that did not receive ESD. Study IV showed that the Swedish FAS used at home as a selfadministered questionnaire is a reliable and valid questionnaire for measuring fatigue in persons with mild to moderate stroke. The internal consistency was good, the agreement between the test and retest reliability for individual items (weighted kappa) was for the majority of items good or moderate. The relative reliability for total scores was good and the absolute reliability was 9 points. The Swedish FAS had no floor nor ceiling effects and correlated both with the SF-36, subscale for vitality and the GDS-15 indicating convergent construct validity, but not divergent construct validity.Conclusion It is possible to develop and implement ESD care for stroke patients based on patients’ experience and needs, evidence-based principles and local conditions. Early supported discharge (ESD) in the setting of modern stroke unit care appears to have positive effects on rehabilitation in the subacute phase. The Swedish FAS used at home as a self-administered questionnaire is reliable and valid for measuring fatigue in persons with mild to moderate stroke.
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23.
  • Conradsson, David Moulaee, et al. (author)
  • Employment status of people with multiple sclerosis in relation to 10-year changes in functioning and perceived impact of the disease
  • 2020
  • In: Multiple Sclerosis and Related Disorders. - : ELSEVIER SCI LTD. - 2211-0348 .- 2211-0356. ; 46
  • Journal article (peer-reviewed)abstract
    • Background: Although it is well known that people with multiple sclerosis (PwMS) retire from work early, little is known about how long-term changes in functioning and perceived impact of multiple sclerosis (MS) interact with sustainability of employment.Objective: To explore changes in functioning and in perceived impact of MS over 10 years, in relation to employment status of PwMS.Methods: In order to measure functioning, data on activities (walking ability, fine hand use, personal activities in daily living); participation in activities of everyday life (domestic, outdoor and leisure activities); body functions (cognitive function, fatigue, depressive symptoms); and perceived impact of MS were collected in 116 PwMS at baseline and at a 10-year follow-up. Ten-year changes were explored with the participants divided into four subgroups based on employment status at the follow-up: 1) full-time work at the 10-year follow-up; 2) part-time work at the 10-year follow-up; 3) declined from working at baseline to not working at the 10-year follow-up; and 4) not working at baseline nor at the 10-year follow-up.Results: Patterns of change in functioning for PwMS who worked showed a more apparent deterioration over 10 years among those working part-time with regard to walking ability, fatigue and depressive symptoms. Members of the subgroups who declined from working at baseline to not working at the 10-year follow-up or who were working neither at baseline nor at the follow-up deteriorated the most in functioning. The subgroup whose employment status declined from baseline to follow-up showed a significant decrease in cognitive function and an increase in perceived physical impact of the disease. All subgroups experienced a deterioration in walking ability over the 10-year span, and in all subgroups a majority had limited fine hand use over the span of the study period.Conclusion: The deterioration in functioning was most apparent in those PwMS whose employment status declined from working at baseline to not working at the 10-year follow-up. Close monitoring of work situation and frequency of activities and participation in everyday activities, as well as recurrent training of functioning, are suggested for maintaining a high level of functioning and work status, or for supporting transition to an appropriate number of working hours.
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24.
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25.
  • Elf, Marie, et al. (author)
  • Designing patient-centered healthcare spaces
  • 2013
  • Conference paper (peer-reviewed)abstract
    • The architecture can promote patients health. Accessibility, safety and care quality can be built into the design of healthcare environments. The current planning process has been criticized to be guided by technical solutions rather than the users’ needs and a lack of correspondence between the goal of the organization and the planning process. We used the system dynamics (SD) modeling method to facilitate the pre-planning process (before architectural design details are presented) of new healthcare environments. SD is an interactive computer-based method that is suitable for use with a group-modeling approach with a focus on learning, which is facilitated through the construction of simple models of the system that help the user to experiment with and study the behavior of these models. The aim of using SD was to strengthen the understanding of the healthcare organization and its care processes, enhance the integration of scientific knowledge related to care processes and architecture. A case study design was used in five different healthcare settings. The participants built the model in collaboration through a reflective and iterative process of learning about their organization/system to contribute to the planning process. The preliminary results show that we succeeded in turning the discussions toward the work and related care processes as a basis for further planning of the building.
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26.
  • Elf, Marie, 1962, et al. (author)
  • Designing Sustainable Health Care Spaces
  • 2008
  • In: The Natural Step´s Sustainability Leadership Challenge - conference in Stockholm. - Stockholm.
  • Conference paper (other academic/artistic)
  •  
27.
  •  
28.
  • Elf, Marie, 1962, et al. (author)
  • Designing sustainable healthcare environments.
  • 2012
  • In: 19th International Conference on Health Promoting Hospitals and Health Services. June 1-3, 2011 Turku, Finland.
  • Conference paper (peer-reviewed)
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29.
  •  
30.
  • Elf, Marie, et al. (author)
  • Self-reported fatigue and associated factors six years after stroke
  • 2016
  • In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 11:8
  • Journal article (peer-reviewed)abstract
    • 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.
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31.
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32.
  • Elf, Marie, 1962-, et al. (author)
  • Tailoring and Evaluating an Intervention to Support Self-management After Stroke : Protocol for a Multi-case, Mixed Methods Comparison Study
  • 2022
  • In: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 11:5
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: Self-management programs are recognized as a valuable approach to supporting people with long-term conditions, such as stroke, in managing their daily lives. Bridges Self-Management (Bridges) focuses on how practitioners interact and support patients' confidence, skills, and knowledge, and it is an example of a complex intervention. Bridges has been developed and used across multiple health care pathways in the United Kingdom and is theoretically informed by social cognition theory and self-efficacy principles. Evidence shows that self-management programs based on the construct of self-efficacy can be effective. There is still much to learn about how health care services or pathways should implement support for self-management in a sustainable way and whether this implementation process is different depending on the context or culture of the team or service provided.OBJECTIVE: The aim of this study is to tailor and evaluate an intervention (Bridges) to support self-management after stroke in a Swedish context.METHODS: We will use a pretest-posttest design with a case study approach to evaluate the feasibility and implementation of self-management support in two stroke settings. This project includes a complex intervention and depends on the actions of individuals, different contexts, and the adaptation of behavior over time. A mixed methods approach was chosen to understand both outcomes and mechanisms of impact. Data collection will comprise outcome measurements and assessment tools as well as qualitative interviews. Data will be collected concurrently and integrated into a mixed methods design.RESULTS: Recruitment and data collection for the first site of the project ran from September 1, 2021, to January 17, 2022. The intervention at the first site was conducted from November 1, 2021, to March 5, 2022. The evaluation will start after the implementation phase. The second site has been recruited, and the baseline data collection will start in spring 2022. The intervention will start in early autumn 2022. Data collection will be completed by the end of 2022.CONCLUSIONS: This study represents a unique, highly relevant, and innovative opportunity to maximize knowledge and minimize practice gaps in rehabilitation stroke care. The study will produce robust data on the intervention and in-depth data on the contextual factors and mechanisms related to the feasibility of the intervention and for whom it is feasible. Bridges has been used in the United Kingdom for more than 10 years, and this study will explore its contextualization and implementation within a Swedish stroke environment. The evaluation will study results at the patient, staff, and organizational levels and provide recommendations for the adoption and refinement of future efforts to support self-management.
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33.
  • Elf, Marie, et al. (author)
  • The case of value-based healthcare for people living with complex long-term conditions
  • 2017
  • In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 17:1, s. 1-6
  • Journal article (peer-reviewed)abstract
    • BackgroundThere is a trend towards value-based health service, striving to cut costs while generating value for the patient. The overall objective comprises higher-quality health services and improved patient safety and cost efficiency. The approach could align with patient-centred care, as it entails a focus on the patient’s experience of her or his entire cycle of care, including the use of well-defined outcome measurements. Challenges arise when the approach is applied to health services for people living with long-term complex conditions that require support from various healthcare services. The aim of this work is to critically discuss the value-based approach and its implications for patients with long-term complex conditions. Two cases from clinical practice and research form the foundation for our reasoning, illustrating several challenges regarding value-based health services for people living with long-term complex conditions.DiscussionAchieving value-based health services that provide the health outcomes that matter to patients and providing greater patient-centredness will place increased demands on the healthcare system. Patients and their informal caregivers must be included in the development and establishment of outcome measures. The outcome measures must be standardized to allow evaluation of specific conditions at an aggregated level, but they must also be sensitive enough to capture each patient’s individual needs and goals. Healthcare systems that strive to establish value-based services must collaborate beyond the organizational boundaries to create clear patient trajectories in order to avoid fragmentation.SummaryThe shift towards value-based health services has the potential to align healthcare-service delivery with patient-centred care if serious efforts to take the patient’s perspective into account are made. This is especially challenging in fragmented healthcare systems and for patients with long-term- and multi-setting-care needs.
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34.
  • Elf, Marie, 1962, et al. (author)
  • upporting pre-planning design phases of new dementia care environments through group-modeling
  • 2012
  • In: Operations Research Society, OR54.
  • Conference paper (other academic/artistic)abstract
    • Problem and rationale The pre-design phase, before architectural design details are presented is important for the success of the entire construction process. In this phase, it is important to identify the needs of the users and the organization. The present project describes a group-modeling project with system dynamics (SD) in the pre-design phase of a new dementia care environment. The aim was to support a dynamic design process that was oriented towards the users needs. SD uses models to create scenarios and experiment with different solutions to understand complex problems. The method is interactive and suited for group- modeling. The tools used are a construction of a diagram depicting the system and a mathematical model for scenario experiments. Methods and procedureThe group- modeling was performed during five workshops with stakeholders from the organization. The data for the model was collected through discussions with the modeling group, a questionnaire, literature reviews and documents. The process was documented by video-recording and field notes. The participants were interviewed at the end of the project. The data was analyzed by content analysis. ResultsResult show that the modeling process supported the group to explicitly express their goal regarding care. The modeling process moved the group discussions from space solutions and square meters to the goals of the care process. The model developed illustrates a modern perspective of dementia care. Conclusions Group-modeling using SD is interesting for the pre-design process. It can be feasible for linking strategic planning of the organization with the plan over the new healthcare environment since it moves the participants in the pre-design phase to focus on important issues about the care and away from a wish list of various needed spaces, commonly achieved in traditional planning processes.
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35.
  • Elf, Marie, et al. (author)
  • Using modeling as a co-design approach in the planning process of new care environments
  • 2016
  • In: Nordic Conference in Nursing Research 2016.
  • Conference paper (peer-reviewed)abstract
    • Current research shows a relationship between healthcare architecture and patient-related Outcomes. The planning and designing of new healthcare environments is a complex process; the needs of the various end-users of the environment must be considered, including the patients, the patients’ significant others, and the staff. The aim of this study was to explore the experiences of healthcare professionals participating in group modelling utilizing system dynamics in the pre-design phase of new healthcare environments. We engaged healthcare professionals in a series of workshops using system dynamics to discuss the planning of healthcare environments in the beginning of a construction, and then interviewed them about their experience. An explorative and qualitative design was used to describe participants’ experiences of participating in the group modelling projects. Participants (n=20) were recruited from a larger intervention study using group modeling and system dynamics in planning and designing projects. The interviews were analysed by qualitative content analysis. Two themes were formed, representing the experiences in the group modeling process: ‘Partaking in the G-M created knowledge and empowerment’and ‘Partaking in the G-M was different from what was expected and required time and skills’. The method can support participants in design teams to focus more on their healthcare organization, their care activities and their aims rather than focusing on detailed layout solutions. This clarification is important when decisions about the design are discussed and prepared and will most likely lead to greater readiness for future building process.
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36.
  • Elf, Marie, et al. (author)
  • Using of Group-Modeling in Predesign Phase of New Healthcare Environments: Stakeholders Experiences
  • 2016
  • In: HERD. - : SAGE Publications. - 2167-5112 .- 1937-5867. ; 9:2, s. 69-81
  • Journal article (peer-reviewed)abstract
    • Background: Current research shows a relationship between healthcare architecture and patient-related outcomes. The planning and designing of new healthcare environments is a complex process. The needs of the various end users of the environment must be considered, including the patients, the patients' significant others, and the staff. The aim of this study was to explore the experiences of healthcare professionals participating in group modeling utilizing system dynamics in the predesign phase of new healthcare environments. We engaged healthcare professionals in a series of workshops using system dynamics to discuss the planning of healthcare environments in the beginning of a construction and then interviewed them about their experience. Methods: An explorative and qualitative design was used to describe participants' experiences of participating in the group-modeling projects. Participants (N = 20) were recruited from a larger intervention study using group modeling and system dynamics in planning and designing projects. The interviews were analyzed by qualitative content analysis. Results: Two themes were formed, representing the experiences in the group-modeling process: Participation in the group modeling generated knowledge and was empowering and Participation in the group modeling differed from what was expected and required the dedication of time and skills. Conclusions: The method can support participants in design teams to focus more on their healthcare organization, their care activities, and their aims rather than focusing on detailed layout solutions. This clarification is important when decisions about the design are discussed and prepared and will most likely lead to greater readiness for future building process.
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37.
  • Erikson, Anette, et al. (author)
  • In search of self after stroke: a longitudinal qualitative study in the context of client-centred rehabilitation
  • 2023
  • In: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 18:1
  • Journal article (peer-reviewed)abstract
    • PurposeThe aim was to illuminate the experiences of stroke survivors returning to everyday life in the year following stroke, in the context of client-centred rehabilitation.MethodsFour men who participated in a client-centred rehabilitation program were followed during the first year after stroke. Semi-structured interviews were conducted, allbut the first in the participants’ home. The data were analysed using a grounded theory approach.ResultsThe results revealed a process with the overarching core category; The “new” self becomes reality through challenging everyday experiences, and five main categories driving the process: 1) Striving for structure in a “new” chaotic world, 2) Homecoming an ambiguous experience, 3) Reaching the “new” self through reflections of self-understanding, 4) Socialising in new circumstances, and 5) Realising a new reality.ConclusionsWhile in hospital, stroke survivors can have unrealistic expectations. When at home they can begin to realise their actual capacity . To find a “new” self after a stroke can involve time-consuming and taxing processes of reflections of self-understanding. Engagement in self-selected meaningful and valued activities can support stroke survivors’ reconstruction of the “new” self but not all stroke survivors may succeed in finding their “new” self during the first year after stroke.
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38.
  • Eriksson, Gunilla, et al. (author)
  • Occupational gaps in everyday life one year after stroke : association with life satisfaction and impact of stroke
  • 2012
  • In: Topics in Stroke Rehabilitation. - Birmingham, USA : Thomas Land Publishers Inc. - 1074-9357 .- 1945-5119. ; 19:3, s. 244-255
  • Journal article (peer-reviewed)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.
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39.
  • Eriksson, Gunilla, et al. (author)
  • Study protocol of a non-randomised controlled trial evaluating the effectiveness of the F@ce 2.0 programme : a person-centred, ICT-supported and interdisciplinary rehabilitation intervention after stroke
  • 2022
  • In: BMJ Open. - : NLM (Medline). - 2044-6055. ; 12:8
  • Journal article (peer-reviewed)abstract
    • INTRODUCTION: Knowledge is missing on use of information and communication technology (ICT), for example, mobile phones/tablets in rehabilitation after stroke. F@ce 2.0 is a person-centred, interdisciplinary intervention supported by ICT. The components of F@ce 2.0 intend to increase performance in daily activities and participation in everyday life for patients with stroke and their significant others. Based on previous feasibility studies, a full-scale evaluation is planned in Sweden. The aim is to implement and evaluate F@ce 2.0, regarding performance of daily activities and participation in everyday life, in comparison with ordinary rehabilitation among persons who have had stroke and significant others. Second, to increase knowledge about how the programme leads to a potential change by studying the implementation process and mechanisms of impact. METHODS AND ANALYSIS: Twelve rehabilitation teams (intervention n=7; control n=5) will recruit patients (n=160) who receive rehabilitation at home after stroke and their significant others. F@ce 2.0 is an 8-week intervention where patients, together with the team, formulate three activity goals regarding what they need and want to do in daily lives. The patients will receive short messages service (SMS) each morning reminding about goals, and in the evening to rate their performance during the day. Primary outcomes for patients: self-efficacy measured by the Self-Efficacy Scale; perceived performance in daily activities measured by the Canadian Occupational Performance Measure. Significant others: perceived caregiver burden measured by Caregiver Burden Scale. Qualitative interviews with team members delivering, patients receiving intervention and significant others will explore experiences of F@ce 2.0. A process evaluation applying a case-study design using mixed methods will be conducted. ETHICS AND DISSEMINATION: Approved by the Swedish Ethical Review Authority, Stockholm. Knowledge will be created for using ICT for rehabilitation of people after stroke in self-selected activities. Dissemination will include peer-reviewed publications, presentations at conferences, and information to stakeholders. TRIAL REGISTRATION NUMBER DETAILS: NCT04351178 . © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
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40.
  • Flink, Maria, et al. (author)
  • Person-centred care transitions for people with stroke : study protocol for a feasibility evaluation of codesigned care transition support.
  • 2021
  • In: BMJ Open. - : BMJ. - 2044-6055. ; 11:12
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: Care transitions following stroke should be bridged with collaboration between hospital staff and home rehabilitation teams since well-coordinated transitions can reduce death and disability following a stroke. However, health services are delivered within organisational structures, rather than being based on patients' needs. The aim of this study protocol is to assess the feasibility, operationalised here as fidelity and acceptability, of a codesigned care transition support for people with stroke.METHODS: This study protocol describes the evaluation of a feasibility study using a non-randomised controlled design. The codesigned care transition support includes patient information using videos, leaflets and teach back; what-matters-to me dialogue; a coordinated rehabilitation plan; bridged e-meeting; and a message system for cross-organisational collaboration. Patients with stroke, first time or recurrent, who are to be discharged home from hospital and referred to a rehabilitation team in primary healthcare for continued rehabilitation in the home will be included. One week after stroke, data will be collected on the primary outcome, namely satisfaction with the care transition support, and on the secondary outcome, namely health literacy and medication adherence. Data on use of healthcare will be obtained from a register of healthcare contacts. The outcomes of patients and significant others will be compared with matched controls from other geriatric stroke and acute stroke units, and with matched historic controls from a previous dataset at the intervention and control units. Data on acceptability and fidelity will be assessed through interviews and observations at the intervention units.ETHICS AND DISSEMINATION: Ethical approvals have been obtained from the Swedish Ethical Review Authority. The results will be published open-access in peer-reviewed journals. Dissemination also includes presentation at national and international conferences.DISCUSSION: The care transition support addresses a poorly functioning part of care trajectories in current healthcare. The development of this codesigned care transition support has involved people with stroke, significant other, and healthcare professionals. Such involvement has the potential to better identify and reconceptualise problems, and incorporate user experiences.TRIAL REGISTRATION NUMBER: http://www.clinicaltrials.gov id: NCT02925871. Date of registration 6 October 2016.PROTOCOL VERSION: 1.
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41.
  • Fors, Uno, et al. (author)
  • User evaluation of a novel SMS-based reminder system for supporting post-stroke rehabilitation
  • 2019
  • In: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 19
  • Journal article (peer-reviewed)abstract
    • Background: According to WHO stroke is a growing societal challenge and the third leading cause of global disease-burden estimated using disability-adjusted life years. Rehabilitation after stroke is an area of mutual interest for health care in many countries. Within the health care sector there is a growing emphasis on ICT services to provide clients with easier access to information, self-evaluation, and self-management. ICT-supported care programs possible to use in clients' home environments are also recommended when there are long distances to the health care specialists. The aim of this study was to evaluate the technical usability of a SMS-based reminder system as well as user opinions when using such a system to assist clients to remember to perform daily rehabilitation activities, to rate their performance and to allow Occupational therapists (OT's) to track and follow-up clients' results over time. Methods: Fifteen persons with stroke were invited to participate in the study and volunteered to receive daily SMS-based reminders regarding three activities to perform on a daily basis as well as answer daily SMS-based questions about their success rate during eight weeks. Clients, a number of family members, as well as OTs were interviewed to evaluate their opinions of using the reminder system. Results: All clients were positive to the reminder system and felt that it helped them to regain their abilities. Their OTs agreed that the reminder and follow-up system was of benefit in the rehabilitation process. However, some technical and other issues were limiting the use of the system for some clients. The issues were mostly linked to the fact that the SMS system was based on a Swedish phone number, so that all messages needed to be sent internationally. Conclusion: In conclusion, it seems that this type of SMS-based reminder systems could be of good use in the rehabilitation process after stroke, even in low income counties where few clients have access to Internet or smart phones, and where access to healthcare services is limited. However, since the results are based on clients', OTs' and family members' expressed beliefs, we suggest that future research objectively investigate the intervention's beneficial effects on the clients' physical and cognitive health.
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42.
  • Forsberg, Anette, 1965-, et al. (author)
  • Effects on Balance and Walking with the CoDuSe Balance Exercise Program in People with Multiple Sclerosis : A Multicenter Randomized Controlled Trial
  • 2016
  • In: Multiple Sclerosis International. - New York, USA : Hindawi Publishing Corporation. - 2090-2654 .- 2090-2662.
  • Journal article (peer-reviewed)abstract
    • Background: Balance and walking impairments are frequent in people with multiple sclerosis (MS).Objective: The aim was to investigate the effects of a group-based balance exercise program targeting core stability, dual tasking, and sensory strategies (CoDuSe) on balance, postural sway, walking, perceived walking limitations, and balance confidence.Design: A single-blinded randomized multicenter trial. No intervention was given to controls. Participants. People with MS able to walk 100 meters but unable to maintain tandem stance >= 30 seconds. Eighty-seven participants were randomized to intervention or control.Intervention: The 60-minute CoDuSe group program, twice weekly for seven weeks, supervised by physical therapists.Measurements: Primary outcome was dynamic balance (Berg Balance Scale (BBS)). Secondary outcomes were postural sway, walking (Timed-Up and Go test; Functional Gait Assessment (FGA)), MS Walking Scale, and Activities-specific Balance Confidence (ABC) Scale. Assessments were performed before and after (week 8) the intervention.Results: 73 participants fulfilled the study. There were significant differences between the intervention and the control groups in change in the BBS and in the secondary measures: postural sway with eyes open, FGA, MS Walking Scale, and ABC scale in favor of the intervention.Conclusions: The seven-week CoDuSe program improved dynamic balance more than no intervention.
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43.
  • Guidetti, Susanne, et al. (author)
  • A "client-centred activities of daily living" intervention for persons with stroke: One-year follow-up of a randomized controlled trial
  • 2015
  • In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 47, s. 605-611
  • Journal article (peer-reviewed)abstract
    • Objective: To compare changes regarding perceived participation,independence in activities of daily living (ADL) andlife satisfaction between 3, 6 and 12 months after inclusion ina study of a client-centred ADL intervention and usual ADLintervention after stroke.Design: A multicentre randomized controlled trial.Methods: Sixteen rehabilitation units were randomly assignedto provide client-centred ADL intervention or usualADL intervention. Eligible participants were persons ≤ 3months after stroke who had been treated in a stroke unit,were dependent in two ADL domains, had not been diagnosedwith dementia, and were able to understand instructions.Data collection was performed by blinded assessors.The primary outcome, perceived participation, was assessedwith the Stroke Impact Scale 3.0, domain 8. The secondaryoutcomes, participation, independence in ADL, and lifesatisfaction, were assessed with validated instruments. Forstatistical power, 280 participants were required. Statisticalanalyses were performed on an intention-to-treat basis.Results: There were no differences between the groups regardingchanges in perceived participation, independence inADL, or life satisfaction during the first 12 months. Therewas a trend towards a clinically meaningful positive changein perceived participation that favoured client-centred ADLintervention.Conclusion: Further research is required to understand thebenefits of client-centred interventions.
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44.
  • Guidetti, Susanne, et al. (author)
  • Activities in Daily Living : The development of a new client-centred ADL intervention for persons with stroke
  • 2022
  • In: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 29:2, s. 104-115
  • Journal article (peer-reviewed)abstract
    • BackgroundAn intervention that contains several interacting components can be defined as a complex intervention. This intervention was developed in accordance with the Medical Research Council (MRC) guidance for complex interventions.AimTo describe the development, theoretical framework, and content of a client-centred activities in daily living intervention (CADL) for people with stroke.Material and methodsDifferent steps were used; identifying the evidence base, identifying/developing theory and the modelling process and outcomes in the development of the CADL. The remodelling of the process and content of the intervention that emerged are defined.ResultsFindings from a series of qualitative studies of people with stroke demonstrated the need to develop an ADL intervention based on the clients’ lived experiences. The theoretical framework is based on empirical research, theories about human occupation and client-centredness. The CADL is applying an occupational and phenomenological perspective in order to enable agency in daily activities and participation in everyday life among persons with stroke.Conclusions and significanceThe article can be used as an example of how to present the development and theoretical framework of a new complex intervention in occupational therapy.
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45.
  • Gustavsson, Catharina, et al. (author)
  • A 9-year follow-up of a self-management group intervention for persistent neck pain in primary health care : a randomized controlled trial
  • 2017
  • In: Journal of Pain Research. - : DOVE MEDICAL PRESS LTD. - 1178-7090. ; 10, s. 53-64
  • Journal article (peer-reviewed)abstract
    • Background and objective: In previous short-term and 2-year follow-ups, a pain and stress self-management group intervention (PASS) had better effect on pain-related disability, self-efficacy, catastrophizing, and perceived pain control than individually administered physiotherapy (IAPT) for patients with persistent tension-type neck pain. Studies that have evaluated long-term effects of self-management approaches toward persistent neck pain are sparse. The objective of this study was to compare pain-related disability, self-efficacy for activities of daily living (ADL), catastrophizing, pain, pain control, use of analgesics, and health care utilization in people with persistent tension-type neck pain 9 years after they received the PASS or IAPT. Materials and methods: Of 156 people (PASS, n = 77; IAPT, n = 79) originally included in a randomized controlled trial, 129 people (PASS, n = 63; IAPT, n = 66) were eligible and were approached for the 9-year follow-up. They were sent a self-assessment questionnaire, comprising the Neck Disability Index, the Self-Efficacy Scale, the Coping Strategies Questionnaire, and questions regarding pain, analgesics, and health care utilization. Mixed linear models for repeated measures analysis or generalized estimating equations were used to evaluate the differences between groups and within groups over time (baseline, previous follow-ups, and 9-year follow-up) and the interaction effect of "time by group". Results: Ninety-four participants (73%) responded (PASS, n = 48; IAPT, n = 46). At 9 years, PASS participants reported less pain-related disability, pain at worst, and analgesics usage, and a trend toward better self-efficacy compared to IAPT participants. There was a difference between groups in terms of change over time for disability, self-efficacy for ADL, catastrophizing, perceived pain control, and health care visits in favor of PASS. Analyses of simple main effects at 9 years showed that the PASS group had less disability (p = 0.006) and a trend toward better self-efficacy (p = 0.059) than the IAPT group. Conclusion: The favorable effects on pain-related disability of PASS were sustained 9 years after the intervention.
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46.
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47.
  • Gustavsson, Catharina, 1961-, et al. (author)
  • Pain self-management intervention supports successful attainment of self-selected rehabilitation goals-secondary analysis of a randomized controlled trial
  • 2022
  • In: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1157-1167
  • Journal article (peer-reviewed)abstract
    • OBJECTIVES: (i) Describe patients' self-selected activity-related rehabilitation goals, and (ii) compare attainment of these rehabilitation goals among people with persistent tension-type neck pain receiving a group-based pain and stress self-management intervention (PASS) or individual physiotherapy (IPT).METHODS: Before intervention and random allocation to PASS or IPT, 156 people (PASS n = 77, IPT n = 79), listed three self-selected activity-related rehabilitation goals by use of the Patient Goal Priority Questionnaire (PGPQ). For each activity goal, participants rated limitations in activity performance, self-efficacy and fear of activity performance, readiness to change to improve performance, and expectations of future activity performance. At follow-ups (10 weeks, 20 weeks, 1 year and 2 years after inclusion), participants also responded to a question on changes made to improve activity performance. Mann-Whitney U test was used to evaluate between-group differences.RESULTS: There were between-group differences in favour of PASS in the attainment of self-selected rehabilitation goals with regard to activity limitations and satisfaction with activity performance at all follow-ups.CONCLUSIONS: PASS was more successful than IPT for the attainment of self-selected rehabilitation goals, improvements in activity limitations and satisfaction with activity performance as measured by PGPQ. The PASS programme emphasized the importance of applying active pain- and stress-coping techniques in personal 'risk situations' for pain flare-ups, which appear to support people with persistent tension-type neck pain to make changes in their lives to improve activity performance.PATIENT OR PUBLIC CONTRIBUTION: Patient engagement in rehabilitation by self-selected goals was investigated, but patients were not involved in the design or conduct of the study.
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48.
  • Gustavsson, Catharina, et al. (author)
  • Predictive factors for disability outcome at 20 weeks and 2 years following a pain self-management group intervention in patients with persistent neck pain in primary health care
  • Other publication (other academic/artistic)abstract
    • Study design. An explorative, longitudinal, prospective study, with measurement at baseline, 20 weeks and 2 years. Objective. To explore plausible predictors associated with short-term (20 weeks) and long-term (2 years) treatment success in terms of pain-related disability for patients with persistent tension-type neck pain following a multi-component pain and stress self-management group intervention (PASS). Summary of Background Data. In previously reported short-term and long-term follow-up, PASS had better effect on pain control, pain-related self-efficacy, disability and catastrophizing than a control treatment; individually administered physical therapy (IAPT). Identification of patients who are likely to benefit from particular interventions is required. Methods. Data collected from 77 participants assigned to PASS in a randomized controlled trial were explored in order to identify plausible predictors of favorable outcome regarding pain-related disability as measured by the Neck Disability Index (NDI), by use of Pearson correlation analysis, factor analysis (FA) and partial least squares (PLS) and ordinary least squares (OLS) regression analyses. Data from self-assessment questionnaires completed by the participants before intervention, post-treatment (20 weeks) and at 2 years after the intervention, were used. The questionnaire comprised: the Self-Efficacy Scale (SES), the NDI, the Coping Strategies Questionnaire(CSQ), the Hospital Anxiety and Depression Scale (HADS) and questions regarding neck pain and analgesics. Results. Multivariate PLS regression analysis showed that baseline scores in NDI, SES and pain intensity explained only 31% of the variance in disability (NDI) immediately post-treatment (20-week follow-up). PLS regression analysis showed that post-treatment scores in NDI, SES and pain intensity explained 68% of the variance in disability (NDI) at 2 years. Univariate OLS linear regression analyses indicated that each variable contributed significantly to the latter PLS regression model (NDI p<0.001, SES p<0.001, pain intensity p<0.001). Conclusions. Treatment gains, as measured by immediate post-treatment scores at 20-week follow-up, in disability, self-efficacy and pain intensity were associated with long-term outcome in pain-related disability two years post-treatment, in patients with persistent neck pain participating in a self-management group intervention in PHC. Pre-treatment characteristics explained only a small proportion of variance in disability post-treatment. Thus, the intervention appears to be feasible for the majority of persons seeking PHC due to persistent tension-type neck pain.
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49.
  • Gustavsson, Catharina, et al. (author)
  • Predictive factors for disability outcome at twenty weeks AND two years following a pain self-management group intervention in patients with persistent neck pain in primary health care
  • 2013
  • In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 45:2, s. 170-176
  • Journal article (peer-reviewed)abstract
    • Objective: To explore possible predictors associated with short-term (post-treatment) and long-term (2 years) treatment success in terms of pain-related disability for patients with persistent neck pain following a pain and stress self-management intervention (PASS). Methods: Data from 77 participants assigned to PASS in a randomized controlled trial were explored to identify possible predictors of favourable outcome regarding pain-related disability as measured by the Neck Disability Index (NDI), by use of Pearson correlation analysis, partial least squares (PLS) and ordinary least squares (OLS) regression analyses. Data from self-assessment questionnaires completed by the participants before, post-treatment (i.e. 20 weeks after inclusion) and 2 years after inclusion in the study, were used. Results: Multivariate PLS regression analysis showed that baseline scores in NDI, the Self-Efficacy Scale. (SES) and pain intensity explained 31% of the variance in disability (NDI) post-treatment. Multivariate PLS regression analysis showed that post-treatment scores in NDI, SES and pain intensity explained 68% of the variance in disability (NDI) at 2 years. Conclusion: Treatment gains, as measured by post-treatment scores at 20-week follow-up, in disability, self-efficacy and pain intensity were associated with long-term outcome in pain-related disability at 2 years, in patients with persistent neck pain participating in a self-management group intervention in primary health care.
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50.
  • Gustavsson, Catharina, 1961- (author)
  • Self-management of Persistent Neck Pain : A Multi-component Group Intervention in Primary Health Care
  • 2011
  • Doctoral thesis (other academic/artistic)abstract
    • The overall aim of this thesis was to evaluate effects of a multi-component pain and stress self-management group intervention (PASS) and to explore plausible predictors associated with short-term and long-term treatment effects among patients with persistent tension-type neck pain in primary health care (PHC). Study I was a pilot study in order to explore feasibility of the study design and methods. It included 37 participants randomly assigned to the intervention (n=18) or treatment-as-usual (n=19). Study II-III was a pragmatic randomized controlled trial that compared effects of the PASS and individually administered physiotherapy (IAPT) on patients with persistent tension-type neck pain in PHC. Study II evaluated short-term effects over a 20-week follow-up. Study III evaluated long-term effects on maintenance over a follow-up period of 2 years. Studies included 156 participants randomly assigned to PASS (n=77) or IAPT (n=79). Study IV explored predictive factors for favorable outcome in disability regarding participants assigned to PASS. The results showed that PASS had better effects than IAPT regarding coping with pain, in terms of patients’ ability to control pain, self-efficacy regarding activities interfered with by pain, disability and catastrophizing, over the 20-week follow-up, and treatment effects were largely maintained over a 2-year follow-up. Post-treatment scores in disability, self-efficacy and pain intensity were associated with long-term outcome in pain-related disability 2 years post-treatment following PASS. Pre-treatment characteristics explained only a minor proportion of variance in disability, and were assumed weakly associated with treatment success and long-term outcome. Key components for enhancement of long-term efficacy in pain self-management coping efforts were adequately targeted by PASS. It is suggested important to strengthen self-efficacy beliefs in regard to pain coping, to reduce disability and enhance pain self-management in the treatment of persistent neck pain, and to induce long-term maintenance of treatment gains on disability following a pain self-management intervention.
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