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  • 1. Andersson, Peter
    et al.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Huddinge.
    Eriksson, Åsa
    Enebrink, Pia
    Sturidsson, Knut
    Implementation and evaluation of Illness Management and Recovery (IMR) in mandated forensic psychiatric care – Study protocol for a multicenter cluster randomized trial2022In: Contemporary Clinical Trials Communications, E-ISSN 2451-8654, Vol. 27, p. 100907-100907, article id 100907Article in journal (Refereed)
    Abstract [en]

    Introduction: Forensic mental health care is hampered by lack of evidence-based treatments. The Swedish forensic mental health population consists of patients suffering from severe illnesses such as schizophrenia and bipolar disorders, similar to populations in international studies. Illness Management and Recovery (IMR) is an intervention for patients with serious mental illness, based on psychoeducational, cognitive-behavioral and motivational components. The purpose is to strengthen participants’ illness management skills and recovery. Objective: To test effectiveness of IMR within forensic mental health by comparing it to treatment as usual. Method: This is a cluster-randomized controlled trial. Patients in forensic mental health inpatient units are randomized to an active (IMR) or a control condition (treatment as usual). Clustering of patients is based on ward-units where inpatients are admitted. Patients in the active condition receive two group and one individual IMR sessions per week. The treatment phase is estimated to last nine months. Outcomes include illness related disability, illness management skills, sense of recovery, hope, mental health and security related problems. Outcomes are measured at baseline, four months into treatment, at treatment completion and at three months follow-up. Staff experiences of implementing IMR will be explored by a self-report measure and semi-structured interview based on Normalization Process Theory. Ethics and dissemination: The study is approved by the Swedish Ethical Review Authority (Registration No. 2020–02046). Participation will be voluntary based on written informed consent. Results will be disseminated through peer-reviewed articles and conferences. The study is registered in the US registry of clinical trials (NCT04695132). 

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  • 2. Bergström, Aileen L
    et al.
    Guidetti, Susanne
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Tham, Kerstin
    von Koch, Lena
    Eriksson, Gunilla
    Perceived occupational gaps one year after stroke: An explorative study2011In: Journal of Rehabilitation Medicine, ISSN 1651-2081, Vol. 44, no 1, p. 36-42Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Elf, Marie
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Flink, Maria
    Karolinska Institutet .
    Nilsson, Marie
    Karolinska Institutet .
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    von Koch, Lena
    Karolinska Institutet .
    Ytterberg, Charlotte
    Karolinska Institutet .
    The case of value-based healthcare for people living with complex long-term conditions2017In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, no 1, p. 1-6, article id 24Article in journal (Refereed)
    Abstract [en]

    Background

    There 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.

    Discussion

    Achieving 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.

    Summary

    The 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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  • 4. Eriksson, Gunilla
    et al.
    Aasnes, Monica
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Guidetti, Susanne
    von Koch, Lena
    Occupational gaps in everyday life one year after stroke: association with life satisfaction and impact of stroke2012In: Topics in Stroke Rehabilitation, ISSN 1074-9357, E-ISSN 1945-5119, Vol. 19, no 3, p. 244-255Article in journal (Refereed)
    Abstract [en]

    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.

  • 5.
    Eriksson, Gunilla
    et al.
    Karolinska Institutet, Stockholm.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Stockholm.
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Fors, Uno
    Stockholm University, Stockholm.
    von Koch, Lena
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Ytterberg, Charlotte
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Guidetti, Susanne
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    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 stroke2022In: BMJ Open, E-ISSN 2044-6055, Vol. 12, no 8, article id e058748Article in journal (Refereed)
    Abstract [en]

    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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  • 6.
    Flink, Maria
    et al.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm; Theme of Women's Health and Allied Health Professionals, Karolinska University Hospital, Stockholm, Sweden.
    Lindblom, Sebastian
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Theme of Women's Health and Allied Health Professionals, Karolinska University Hospital, Stockholm, Sweden.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science.
    Laska, Ann Charlotte
    Department of Clinical Sciences Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.
    Bertilsson, Bo Christer
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Wärlinge, Carmen
    Academic Primary Health Care Centre, Region Stockholm, Stockholm, Sweden.
    Hasselström, Jan
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Academic Primary Health Care Centre, Region Stockholm, Stockholm, Sweden.
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    von Koch, Lena
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Theme Neuro, Karolinska University Hospital, Stockholm, Sweden.
    Ytterberg, Charlotte
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Theme of Women's Health and Allied Health Professionals, Karolinska University Hospital, Stockholm, Sweden.
    Person-centred care transitions for people with stroke: study protocol for a feasibility evaluation of codesigned care transition support.2021In: BMJ Open, E-ISSN 2044-6055, Vol. 11, no 12, article id e047329Article in journal (Refereed)
    Abstract [en]

    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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  • 7.
    Fridberg, Helena
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. University of Gothenburg.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institute, Stockholm.
    Operationalisation of person-centred care in a real-world setting: a case study with six embedded units2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 1160Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although person-centred care (PCC) is growing globally in popularity it is often vague and lacks conceptual clarity and definition. The ambiguity stretches from PCC's underlying philosophical principles and definitions of the concept to how it is operationalised and practised on the ground by health care professionals. We explore how the PCC model by the Gothenburg University Centre for Person-centred Care (GPCC) was operationalised in a real-world setting by using a set of recommendations by Fixsen and others that define and structure the core components of innovations in four distinct but interrelated components: philosophical principles and values, contextual factors, structural elements and core practices. Thus, this study aimed to increase knowledge about core practices in PCC in six health care units in real-world circumstances.

    METHODS: A case study with six embedded health care units was conducted from 2016 to 2019. We collected data from three sources: interviews (n = 12) with change agents, activity logs and written documents. Data were triangulated, and core practices were identified and deductively coded to the PCC model's structural elements: initiating, working and safeguarding the partnership with patients.

    RESULTS: We identified operationalisations of PCC in line with the three structural elements in the GPCC model at all included health care units. A range of both similarities and dissimilarities between units were identified, including the level of detail in describing PCC practices, when these practices were conducted and by whom at the workplace. The recommendations for describing the core components of PCC also helped us identify how some operationalisations of PCC seemed more driven by contextual factors, including a new regulation for planning and documenting care across health care specialities.

    CONCLUSIONS: Our findings show how PCC is operationalised in different health care units in a real-world setting based on change agents' understanding of the concept and their unique context. Increased knowledge of PCC and its philosophical principles and values, contextual factors, structural elements and core practices, is necessary to build a common understanding of the PCC-concept. Such knowledge is essential when PCC is operationalised as part of implementation efforts in health care.

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  • 8.
    Fridberg, Helena
    et al.
    Dalarna University, School of Teacher Education, Educational Work.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Sahlgrenska Academy at the University of Gothenburg.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institute, Stockholm.
    The innovation characteristics of person-centred care as perceived by healthcare professionals: an interview study employing a deductive-inductive content analysis guided by the consolidated framework for implementation research.2021In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 21, no 1, article id 904Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Person-centred care (PCC) is promoted as an innovation that will improve patients' rights and increase their participation in healthcare. Experience shows that the implementation of PCC is challenging and often results in varying levels of adoption. How health care professionals (HCPs) perceive an innovation such as PCC is an important factor to consider in implementation. Yet, such studies are scarce. Thus, in a sample of healthcare units in a region in Sweden, involved in a transition to PCC, we aimed to investigate HCPs' perceptions of PCC.

    METHODS: An interview study was conducted in 2018 during the implementation of PCC with HCPs (n = 97) representing diverse vocational roles in six healthcare contexts. Data were collected via focus groups (n = 15), dyadic interviews (n = 5), and individual interviews (n = 22) and analysed using a deductive-inductive content analysis. The deductive approach was guided by the Consolidated Framework for Implementation Research (CFIR), followed by an inductive analysis to describe HCPs' in-depth perceptions of PCC in relation to each of the CFIR constructs.

    RESULTS: Eight constructs from two of the CFIR domains, Intervention characteristics and Inner setting, were used to code HCPs' perceptions of PCC. One construct, Observability, was added to the coding sheet to fully describe all the data. The constructs Relative advantage, Complexity, Compatibility, Observability, and Available resources were discussed in depth by HCPs and resulted in rich and detailed data in the inductive data analysis. This analysis showed large variations in perceptions of PCC among HCPs, based on factors such as the PCCs ethical underpinnings, its operationalisation into concrete working routines, and each HCPs' unique recognition of PCC and the value they placed on it.

    CONCLUSIONS: We identified nine CFIR constructs that seem pertinent to HCPs' perceptions of PCC. HCPs report an array of mixed perceptions of PCC, underlining its complex nature. The perceptions are shaped by a range of factors, such as their individual understandings of the concept and the operationalisation of PCC in their local context. Stakeholders in charge of implementing PCC might use the results as a guide, delineating factors that may be important to consider in a wide range of healthcare contexts.

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  • 9.
    Fridberg, Helena
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Institute of Health and Care Sciences and University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy at the University of Gothenburg, Gothenburg.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm.
    Tracking, naming, specifying, and comparing implementation strategies for person-centred care in a real-world setting: a case study with seven embedded units2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 1409Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The implementation of person-centred care (PCC) is advocated worldwide. Stakeholders in charge of implementing PCC as a broad-scale change across the health care sector face two intertwined and complex challenges. First, making sense of PCC as an intervention with complex innovation characteristics and second, staging implementation of PCC by choosing appropriate implementation strategies. We aimed to explore one of these challenges by tracking, naming, specifying, and comparing which strategies and how strategies were enacted to support the implementation of more PCC in a real-world setting represented by one health care region in Sweden.

    METHODS: A case study with seven embedded units at two organisational levels within a health care region was conducted from 2016 to 2019. Data were collected from three sources: activity logs, interviews, and written documents. Strategies were identified from all sources and triangulated deductively by name, definition, and cluster in line with the taxonomy Expert Recommendations for Implementing Change (ERIC) and specified according to recommendations by Proctor and colleagues as actor, action, action target, temporality, dose, outcome, and justification.

    RESULTS: Four hundred thirteen activities were reported in logs, representing 43 discrete strategies identified in ERIC (n = 38), elsewhere (n = 1), or as emerging strategies (n = 4). The highest reported frequencies of discrete strategies were identified as belonging to two clusters: Train and educate stakeholders (40%) and Develop stakeholder interrelationships (38%). We identified a limited number of strategies belonging to the cluster Use evaluative and iterative strategies (4.6%) and an even smaller number of strategies targeting information to patients about the change initiative (0.8%). Most of the total dose of 11,076 person-hours in the 7 units was spent on strategies targeting health care professionals who provide PCC (81.5%) while the dose of strategies targeting support functions was 18.5%.

    CONCLUSIONS: Our findings show both challenges and merits when strategies for implementation of PCC are conducted in a real-world setting. The results can be used to support and guide both scientists and practitioners in future implementation initiatives.

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  • 10.
    Fridberg, Helena
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences.
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Sahlgrenska Academy at the University of Gothenburg.
    Wallengren, C.
    Kottorp, A.
    Forsman, Henrietta
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Karolinska Institutet.
    Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care2020In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, no 1, article id 960Article in journal (Refereed)
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  • 11.
    Goldkuhl, Lisa
    et al.
    Sahlgrenska Academy, University of Gothenburg, Gothenburg; Sahlgrenska University Hospital, Gothenburg.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Huddinge.
    Gyllensten, Hanna
    Sahlgrenska Academy, University of Gothenburg, Gothenburg.
    Berg, Marie
    Sahlgrenska Academy, University of Gothenburg, Gothenburg; Evangelical University in Africa, Bukavu, Democratic Republic of Congo.
    Implementing a new birthing room design: a qualitative study with a care provider perspective2023In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1, article id 1122Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Research shows that interventions to protect the sensitive physiological process of birth by improving the birthing room design may positively affect perinatal outcomes. It is, however, crucial to understand the mechanisms and contextual elements that influence the outcomes of such complex interventions. Hence, we aimed to explore care providers' experiences of the implementation of a new hospital birthing room designed to be more supportive of women's birth physiology.

    METHODS: This qualitative study reports on the implementation of the new birthing room, which was evaluated in the Room4Birth randomised controlled trial in Sweden. Individual interviews were undertaken with care providers, including assistant nurses, midwives, obstetricians, and managers (n = 21). A content analysis of interview data was conducted and mapped into the three domains of the Normalisation Process Theory coding manual: implementation context, mechanism, and outcome.

    RESULTS: The implementation of the new room challenged the prevailing biomedical paradigm within the labour ward context and raised the care providers' awareness about the complex interplay between birth physiology and the environment. This awareness had the potential to encourage care providers to be more emotionally present, rather than to focus on monitoring practices. The new room also evoked a sense of insecurity due to its unfamiliar design, which acted as a barrier to integrating the room as a well-functioning part of everyday care practice.

    CONCLUSION: Our findings highlight the disparity that existed between what care providers considered valuable for women during childbirth and their own requirements from the built environment based on their professional responsibilities. This identified disparity emphasises the importance of hospital birthing rooms (i) supporting women's emotions and birth physiology and (ii) being standardised to meet care providers' requirements for a functional work environment.

    TRIAL REGISTRATION: ClinicalTrials.gov: NCT03948815, 14/05/2019.

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  • 12.
    Grim, Katarina
    et al.
    Dalarna University, School of Education, Health and Social Studies, Care Sciences. Karlstads universitet.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Schön, Ulla-Karin
    Dalarna University, School of Education, Health and Social Studies, Social Work. Stockholms universitet.
    Rosenberg, David
    Umeå universitet.
    The legitimacy of user knowledge in decision-making processes in mental health care: An analysis of epistemic injustice2019In: Journal of Psychosocial Rehabilitation and Mental Health, ISSN 2198-9834, E-ISSN 2198-963X, Vol. 6, no 2, p. 157-173Article in journal (Refereed)
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  • 13.
    Gyllensten, Hanna
    et al.
    University of Gothenburg, Gothenburg; .
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institute, Stockholm.
    Fridberg, Helena
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Medical Science.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. University of Gothenburg, Gothenburg.
    Analysis on personnel costs and working time for implementing a more person-centred care approach: a case study with embedded units in a Swedish region2023In: BMJ Open, E-ISSN 2044-6055, Vol. 13, no 10, article id e073829Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Our aim was to describe the time and costs used during the implementation of a more person-centred care (PCC) approach as part of ordinary practice.

    DESIGN: A case study with embedded units.

    SETTING: Region Dalarna, Sweden.

    PARTICIPANTS: The Department for Development (DD) staff who provided a central support function in the implementation and six healthcare units: nephrology, two geriatric care and rehabilitation units, two psychiatry units and primary care.

    INTERVENTIONS: More PCC.

    PRIMARY AND SECONDARY OUTCOME MEASURES: Working days and related salary costs reported by categories indicating costs for implementation strategies, service delivery, and research/development costs.

    RESULTS: The healthcare units logged on average 5.5 working days per staff member. In the healthcare units, 6%-57% of the time reported was used for implementation strategies, 40%-90% for service delivery and 2%-12% for research/development. Of the time reported by the DD, 88% was assigned to implementation strategies. Costs associated with reported time indicated 23% of costs for this implementation occurred in the DD. Using the budgeted cost, this proportion increased to 48%. The budget for the DD corresponded to SEK 2.30 per citizen per year and 0.009% of the total healthcare budget of the region.

    CONCLUSIONS: The study found that a large part of resources used for this implementation of more PCC occurred in the DD, although at least half of the costs occurred in the healthcare units. Moreover, the cost of providing a central support function corresponds to a tiny proportion of the total health budget.

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  • 14. Hultman, L.
    et al.
    Von Koch, L.
    Schön, U. -K
    Åkesson, E.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska institutet.
    Exploring the Sharing and Legitimacy of Experience-Based Knowledge of Living with Acquired Brain Injury in Two Practice Communities2023In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 2023, article id 6677161Article in journal (Refereed)
    Abstract [en]

    Background. Involving people with acquired brain injury in service development has the potential to improve service and give experience-based knowledge legitimacy. The objective of this study was to explore experiences of sharing experience-based knowledge of living with acquired brain injury with others, with a particular focus on the conditions for sharing and learning, and the legitimacy of experience-based knowledge. Materials and Methods. Using a single case study design, the processes in two groups that were part of a Swedish supportive network for people with acquired brain injury were explored. One group consisted mainly of people with acquired brain injury who authored a blog and the other group consisted of healthcare staff who produced educational material with the involvement of a person with own experience of acquired brain injury. The data consisted of forty-one collective blogs, fifteen semistructured individual interviews, and ten observations from meetings. The data were analysed by utilizing the community of practice framework and the concepts of legitimate peripheral participation and epistemic injustice. Results. The findings showed that both groups developed learning processes with a focus on everyday rehabilitation as a joint enterprise. Mutual engagement developed from doing activities together and legitimacy in the groups came from engagement in these activities. In the education group, the ambition to involve people with own experience of acquired brain injury was never realized in practice. Hence, experience-based knowledge of living with acquired brain injury never got legitimacy in the group. Conclusions. We conclude that integrating experience-based knowledge from people with own experience of acquired brain injury demands careful and deliberate planning with specific consideration to existing power asymmetries between healthcare professionals and people with own experience. Mitigating epistemic injustice and gaining legitimacy for such knowledge require that people with experience of living with acquired brain injury are recognized as knowledge producers. © 2023 Lill Hultman et al.

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  • 15. Kristensen, Hanne Kaae
    et al.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Koch, Lena von
    Ytterberg, Charlotte
    The importance of patient involvement in stroke rehabilitation2016In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 6, article id e0157149Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the perceived needs for health services by persons with stroke within the first year after rehabilitation, and associations between perceived impact of stroke, involvement in decisions regarding care/treatment, and having health services needs met.

    METHOD: Data was collected, through a mail survey, from patients with stroke who were admitted to a university hospital in 2012 and had received rehabilitation after discharge from the stroke unit. The rehabilitation lasted an average of 2 to 4.6 months. The Stroke Survivor Needs Survey Questionnaire was used to assess the participants' perceptions of involvement in decisions on care or treatment and needs for health services in 11 problem areas: mobility, falls, incontinence, pain, fatigue, emotion, concentration, memory, speaking, reading, and sight. The perceived impact of stroke in eight areas was assessed using the Stroke Impact Scale (SIS) 3.0. Eleven logistic regression models were created to explore associations between having health services needs met in each problem area respectively (dependent variable) and the independent variables. In all models the independent variables were: age, sex, SIS domain corresponding to the dependent variable, or stroke severity in cases when no corresponding SIS domain was identified, and involvement in decisions on care and treatment.

    RESULTS: The 63 participants who returned the questionnaires had a mean age of 72 years, 33 were male and 30 were female. Eighty percent had suffered a mild stroke. The number of participants who reported problems varied between 51 (80%, mobility) and 24 (38%, sight). Involvement in decisions on care and treatment was found to be associated with having health services needs met in six problem areas: falls, fatigue, emotion, memory, speaking, and reading.

    CONCLUSIONS: The results highlight the importance of involving patients in making decisions on stroke rehabilitation, as it appears to be associated with meeting their health services needs.

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  • 16. Lindblom, Sebastian
    et al.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Huddinge.
    Flink, Maria
    Laska, Ann Charlotte
    von Koch, Lena
    Ytterberg, Charlotte
    Referral-based transition to subsequent rehabilitation at home after stroke: one-year outcomes and use of healthcare services2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 594Article in journal (Refereed)
    Abstract [en]

    Background: There is a lack of knowledge about patients’ journeys across the stroke care continuum, especially regarding the transition from inpatient to outpatient care and rehabilitation. Therefore, the aim of the present study was to explore and describe patterns of healthcare use over a one-year period, health outcomes at 3 and 12 months for patients following a referral-based transition to subsequent rehabilitation in the home, and the caregiver burden on their significant others. A further aim was to explore factors associated with the use of rehabilitation and healthcare after the referral-based transition to continued rehabilitation in the home for people recovering from a stroke. Methods: Data regarding healthcare use during the first 12 months post-stroke was collected from the Region Stockholm computerized register. Data on patient characteristics, disease-related data, and functioning were retrieved drawn from medical records and questionnaires. Descriptive statistics were used to present healthcare use, participants’ characteristics, disease-related data, and patient functioning. Multivariable regression models were created to explore associations between the total number of outpatient contacts, total visits with the neurorehabilitation team, and the independent variables. Results: The mean age for the 190 participants was 73 years for men and 78 years for women. Twenty-one participants (11%) had an acute rehospitalization within 30 days after discharge, and 41 participants (21%) were re-hospitalized within 90 days. Twenty-two (12%) of the participants had no visits with the neurorehabilitation team, 73 (39%) participants had 1–3 visits, 57 (30%) had 4–16 visits, and 38 (20%) had ≥17 visits. Female sex and length of hospital stay were associated with a higher number of visits with the neurorehabilitation team. Living alone, higher self-rated recovery, and being able to walk independently were associated with a lower number of visits with the neurorehabilitation team. Female sex, having home help services before the stroke, longer length of hospital stay, and more comorbidities were associated with a higher number of outpatient contacts. Conclusions: The findings indicate that there is no generic pattern of healthcare use during the first-year post-stroke in patients receiving referral-based transition to continued rehabilitation in the home. The different patterns of healthcare use seemed to mirror the participants’ level of functioning. However, there is a need to further investigate how follow-up and rehabilitation correspond to the needs of patients and their significant others in the short- and long-term perspective. Trial registration: ClinicalTrials.gov, registration number: NCT02925871. Date of registration: October 6, 2016. © 2022, The Author(s).

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  • 17.
    Lindblom, Sebastian
    et al.
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Ytterberg, Charlotte
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Flink, Maria
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Carlsson, Axel C
    Karolinska Institutet, Stockholm; Academic Primary Health Care Centre, Region Stockholm, Stockholm.
    Stenberg, Una
    Oslo University Hospital, Oslo, Norway; Frambu Centre for Rare Disorders, Siggerud, Norway.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Stockholm.
    von Koch, Lena
    Karolinska Institutet, Stockholm; Karolinska University Hospital, Stockholm.
    Laska, Ann Charlotte
    Karolinska Institutet, Stockholm.
    The Use of Teach Back at Hospital Discharge to Support Self-Management of Prescribed Medication for Secondary Prevention after Stroke-Findings from A Feasibility Study2023In: Healthcare, E-ISSN 2227-9032, Vol. 11, no 3, article id 391Article in journal (Refereed)
    Abstract [en]

    The study aimed to investigate whether a structured discharge letter and the use of the person-centred communication method Teach Back for sharing information at hospital discharge could support perceived understanding and knowledge of and adherence to prescribed medication for secondary prevention after stroke. Data from a feasibility study of a codesigned care transition support for people with stroke was used. Patients who at discharge received both a structured discharge letter and participated in the person-centred communication method Teach Back (n = 17) were compared with patients receiving standard discharge procedures (n = 21). Questionnaires were used to compare the groups regarding perceived understanding of information about medical treatment, knowledge of information about medical treatment and medication adherence at 1 week and 3 months. There was a statistically significant difference in perceived understanding of information about medical treatment (p > 0.01) between the groups in favour of those who participated in Teach Back at the discharge encounter. No differences between groups were found regarding understanding health information about medical treatment and medication adherence. The results indicate that the use of Teach Back at the discharge encounter positively impacts perceived understanding of information about medical treatment in people with stroke. However, considering the nonrandomised study design and the small sample size, a large-scale trial is needed.

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  • 18. Lundell, S.
    et al.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Rehn, B.
    Wiklund, M.
    Holmner, Å.
    Wadell, K.
    Building COPD care on shaky ground: A mixed methods study from Swedish primary care professional perspective2017In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, no 1, article id 467Article in journal (Refereed)
    Abstract [en]

    Background: Chronic obstructive pulmonary disease (COPD) is a public health problem. Interprofessional collaboration and health promotion interventions such as exercise training, education, and behaviour change are cost effective, have a good effect on health status, and are recommended in COPD treatment guidelines. There is a gap between the guidelines and the healthcare available to people with COPD. The aim of this study was to increase the understanding of what shapes the provision of primary care services to people with COPD and what healthcare is offered to them from the perspective of healthcare professionals and managers.

    Methods: The study was conducted in primary care in a Swedish county council during January to June 2015. A qualitatively driven mixed methods design was applied. Qualitative and quantitative findings were merged into a joint analysis. Interviews for the qualitative component were performed with healthcare professionals (n = 14) from two primary care centres and analysed with qualitative content analysis. Two questionnaires were used for the quantitative component; one was answered by senior managers or COPD nurses at primary care centres (n = 26) in the county council and the other was answered by healthcare professionals (n = 18) at two primary care centres. The questionnaire data were analysed with descriptive statistics.

    Results: The analysis gave rise to the overarching theme building COPD care on shaky ground. This represents professionals driven to build a supportive COPD care on 'shaky' organisational ground in a fragmented and non-compliant healthcare organisation. The shaky ground is further represented by uninformed patients with a complex disease, which is surrounded with shame. The professionals are autonomous and pragmatic, used to taking responsibility for their work, and with limited involvement of the management. They wish to provide high quality COPD care with interprofessional collaboration, but they lack competence and are hindered by inadequate routines and lack of resources.

    Conclusions: There is a gap between COPD treatment guidelines and the healthcare that is provided in primary care. To facilitate implementation of the guidelines several actions are needed, such as further training for professionals, additional resources, and improved organisational structure for interprofessional collaboration and patient education. 

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  • 19. Lundell, S.
    et al.
    Wadell, K.
    Wiklund, M.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Enhancing Confidence and Coping with Stigma in an Ambiguous Interaction with Primary Care: A Qualitative Study of People with COPD2020In: COPD: Journal of Chronic Obstructive Pulmonary Disease, ISSN 1541-2555, E-ISSN 1541-2563, Vol. 17, no 5, p. 533-542Article in journal (Refereed)
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  • 20. Marklund, Sarah
    et al.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska institutet.
    Lundell, Sara
    Östrand, Lina
    Sörlin, Ann
    Boström, Carina
    Wadell, Karin
    Nyberg, Andre
    Experiences and Factors Affecting Usage of an eHealth Tool for Self-Management Among People With Chronic Obstructive Pulmonary Disease: Qualitative Study.2021In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 23, no 4, article id e25672Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Self-management strategies are regarded as highly prioritized in chronic obstructive pulmonary disease (COPD) treatment guidelines. However, individual and structural barriers lead to a staggering amount of people with COPD that are not offered support for such strategies, and new approaches are urgently needed to circumvent these barriers. A promising way of delivering health services such as support for self-management strategies is the use of eHealth tools. However, there is a lack of knowledge about the usage of, and factors affecting the use of, eHealth tools over time in people with COPD.

    OBJECTIVE: This study aimed, among people with COPD, to explore and describe the experiences of an eHealth tool over time and factors that might affect usage.

    METHODS: The eHealth tool included information on evidence-based self-management treatment for people with COPD, including texts, pictures, videos as well as interactive components such as a step registration function with automatized feedback. In addition to the latter, automated notifications of new content and pedometers were used as triggers to increase usage. After having access to the tool for 3 months, 16 individuals (12 women) with COPD were individually interviewed. At 12 months' access to the tool, 7 (5 women) of the previous 16 individuals accepted a second individual interview. Data were analyzed using qualitative content analysis. User frequency was considered in the analysis, and participants were divided into users and nonusers/seldom users depending on the number of logins and minutes of usage per month.

    RESULTS: Three main categories, namely, ambiguous impact, basic conditions for usage, and approaching capability emerged from the analysis, which, together with their subcategories, reflect the participants' experiences of using the eHealth tool. Nonusers/seldom users (median 1.5 logins and 1.78 minutes spent on the site per month) reported low motivation, a higher need for technical support, a negative view about the disease and self-management, and had problematic health literacy as measured by the Communicative and Critical Health Literacy Scale (median [range] 154 [5-2102]). Users (median 10 logins and 43 minutes per month) felt comfortable with information technology (IT) tools, had a positive view on triggers, and had sufficient health literacy (median [range] 5 [5-1400]). Benefits including behavior changes were mainly expressed after 12 months had passed and mainly among users.

    CONCLUSIONS: Findings of this study indicate that the level of motivation, comfortability with IT tools, and the level of health literacy seem to affect usage of an eHealth tool over time. Besides, regarding behavioral changes, gaining benefits from the eHealth tool seems reserved for the users and specifically after 12 months, thus suggesting that eHealth tools can be suitable media for supporting COPD-specific self-management skills, although not for everyone or at all times. These novel findings are of importance when designing new eHealth tools as well as when deciding on whether or not an eHealth tool might be appropriate to use if the goal is to support self-management among people with COPD.

    TRIAL REGISTRATION: ClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187.

    INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2017-016851.

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  • 21.
    Nyberg, André
    et al.
    Umeå University, Umeå.
    Sondell, Anna
    Umeå University, Umeå.
    Lundell, Sara
    Umeå University, Umeå.
    Marklund, Sarah
    Umeå University, Umeå.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science.
    Wadell, Karin
    Umeå University, Umeå.
    Experiences of Using an Electronic Health Tool Among Health Care Professionals Involved in Chronic Obstructive Pulmonary Disease Management: Qualitative Analysis.2023In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 10, article id e43269Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Chronic obstructive pulmonary disease (COPD) is one of the most common and deadliest chronic diseases of the 21st century. eHealth tools are seen as a promising way of supporting health care professionals in providing evidence-based COPD care, for example, by reinforcing information and interventions provided to the patients and providing easier access and support to the health care professional themselves. Still, knowledge is scarce on the experience of using eHealth tools from the perspective of the health care professional involved in COPD management.

    OBJECTIVE: The study explored the experiences of using an eHealth tool among health care professionals that worked with patients with COPD in their daily clinical practice.

    METHODS: This exploratory qualitative study is part of a process evaluation in a parallel group, controlled, pragmatic pilot trial. Semistructured interviews were performed with 10 health care professionals 3 and 12 months after getting access to an eHealth tool, the COPD Web. The COPD Web, developed using cocreation, is an interactive web-based platform that aims to help health care professionals provide health-promoting strategies. Data from the interviews were analyzed using qualitative content analysis with an inductive approach.

    RESULTS: The main results reflected health care professionals' experiences in 3 categories: receiving competence support and adjusting practice, improving quality of care, and efforts required for implementation. These categories highlighted that using an eHealth tool such as the COPD Web was experienced to provide knowledge support for health care professionals that led to adaptation and facilitation of working procedures and person-centered care. Taken together, these changes were perceived to improve the quality of care through enhanced patient contact and encouragement of interprofessional collaboration. In addition, health care professionals expressed that patients using the COPD Web were better equipped to tackle their disease and adhered better to provided treatment, increasing their self-management ability. However, structural and external barriers bar the successful implementation of an eHealth tool in daily praxis.

    CONCLUSIONS: This study is among the first to explore experiences of using an eHealth tool among health care professionals involved in COPD management. Our novel findings highlight that using an eHealth tool such as the COPD Web may improve the quality of care for patients with COPD (eg, by providing knowledge support for health care professionals and adapting and facilitating working procedures). Our results also indicate that an eHealth tool fosters collaborative interactions between patients and health care professionals, which explains why eHealth is a valuable means of encouraging well-informed and autonomous patients. However, structural and external barriers requiring time, support, and education must be addressed to ensure that an eHealth tool can be successfully implemented in daily praxis.

    TRIAL REGISTRATION: ClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187.

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  • 22.
    Nyberg, André
    et al.
    Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Wadell, Karin
    Umeå universitet, Institutionen för samhällsmedicin och rehabilitering.
    Can the COPD Web be used to promote self-management in patients with COPD in Swedish primary care: a controlled pragmatic pilot trial with 3 month and 12 month follow-up2019In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 37, no 1, p. 69-82Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:

    Evaluate the feasibility of the COPD Web and its study design and study procedures and to increase the understanding of the potential effect of the tool in order to provide guidance for a future large scale trial.

    DESIGN:

    Parallel-group controlled pragmatic pilot trial.

    SUBJECTS:

    There was a total of 83 patients with COPD (mean age 70 ± 8 years with a forced expiratory volume in first second percent predicted of 60 ± 17%). The intervention group (n = 43) was introduced to and had access to the COPD Web in addition to usual care, while the control group (n = 40) received usual care alone.

    MAIN OUTCOME MEASURES:

    The feasibility of the COPD Web (i.e., if and how the COPD Web was used) was automatically collected through the website, while outcomes on health, conceptual knowledge, and physical activity (PA) were collected through questionnaires at baseline, 3 months and 12 months.

    RESULTS:

    At 3 months, 77% of the intervention group was considered users, and the majority of time spent on the site was related to PA and exercises and was spent during the first month (>80%). In addition, the intervention group reported increased PA (odds ratio [OR] = 4.4, P < .001), increased conceptual knowledge in five domains (OR = 2.6-4.2, all P < .05), and altered disease management strategies (e.g., increased PA) (OR ≥ 2.7 P < .05) in comparison to the control group. The latter was also different between groups at 12 months (OR = 3.7, P = .044). Knowledge of PA was correlated with level of PA (ρ = .425-.512, P < .05) as well as to the use of PA as a strategy to manage their disease (χ2 = 11.2-32.9, P < .05).

    CONCLUSION:

    Giving patients with COPD access to the COPD Web in addition to their ordinary primary care might be an effective shorter term (3 month) strategy to promote self-management. However, these results needs to be confirmed in a definitive large-scale trial. Key points Even though self-management strategies are an important part of chronic obstructive pulmonary disease (COPD) management, access to support for such strategies are limited for a large part of the COPD-population. Promoting self-management through the COPD Web might increase short-term levels of physical activity, promote conceptual knowledge and alter disease management strategies. The primary care COPD population in this study experienced limited impact of the disease in daily life, limited exertional dyspnea, and high generic quality-of-life, but vastly reduced levels of physical activity. A future large scale study should include strategies to encourage greater exposures to the COPD Web, including an extended analysis of factors associated with using or not using the tool over time and its impact on outcome measures, objective measures of conceptual knowledge, and physical activity, and it should include a large enough sample size to enable sub-group analyses and strategies to enhance recruitment.

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  • 23. Nyberg, André
    et al.
    Wadell, Karin
    Lindgren, Helena
    Tistad, Malin
    Umeå universitet, Institutionen för samhällsmedicin och rehabilitering, Fysioterapin.
    Internet-based support for self-management strategies for people with COPD-protocol for a controlled pragmatic pilot trial of effectiveness and a process evaluation in primary healthcare2017In: BMJ Open, E-ISSN 2044-6055, Vol. 7, no 7, article id e016851Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: The use of adequate self-management strategies for people with chronic obstructive pulmonary disease (COPD) reduces healthcare use, improves health-related quality of life (HRQoL) and recovery after acute exacerbations. However, not many people with COPD receive support that promotes the use of such strategies and therefore new methods to facilitate and promote the use of self-management strategies are highly warranted. This pilot trial aims to evaluate the feasibility of the study design and study procedures considering effectiveness of the novel intervention, the COPD-web. METHODS AND ANALYSIS: The overall design is a pragmatic controlled pilot trial with preassessments and postassessments and a parallel process evaluation. Patients with the diagnosis of COPD will be eligible for the study. The intervention group will be recruited when visiting one of the six participating primary care units in Sweden. The control group will be identified from the unit's computerised registers. The intervention, the COPD-web, is an interactive web page with two sections; one directed at people with COPD and one at healthcare professionals. The sections aim to support patients' self-management skills-and to facilitate the provision of support for self-management strategies, respectively. Effectiveness with regard to patients' symptoms, HRQoL, knowledge of and readiness for COPD-related self-management, health literacy, self-efficacy for physical activity and time spent in physical activity and time being sedentary, and further, healthcare professionals' knowledge of and readiness to support COPD-related self-management strategies will be assessed using questionnaires at 3 and 12 months. The process evaluation will include observations and interviews.

    ETHICS AND DISSEMINATION: Ethical approval has been obtained. Findings will be presented at conferences, submitted for publication in peer-reviewed publications and presented to the involved healthcare professionals, patients and to patient organisations.

    TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT02696187.

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  • 24.
    Osman, Fatumo
    et al.
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Schön, Ulla-Karin
    Dalarna University, School of Health and Welfare, Social Work. Stockholm University.
    Klingberg-Allvin, Marie
    Dalarna University, School of Health and Welfare, Sexual Reproductive Perinatal Health.
    Flacking, Renée
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science.
    The implementation of a culturally tailored parenting support programme for Somali immigrant parents living in Sweden: A process evaluation2022In: PLOS ONE, E-ISSN 1932-6203, Vol. 17, no 9, article id e0274430Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Parental support programmes aim to strengthen family functioning and the parent-child relationship and to promote the mental health of children and parents. However, there is a lack of knowledge on how parenting support programmes can be implemented for newly arrived immigrant parents. This process evaluation describes the implementation of a successful parenting programme for immigrant parents from Somalia and identifies key components of the implementation process with a focus on Reach, Adaptation, and Fidelity of Ladnaan intervention.

    METHOD: This process evaluation considered context, implementation and mechanism of impact, in accordance with the Medical Research Council's guidance. Data were collected through focus group discussions, a questionnaire, attendance lists, field and reflection notes and observations of the sessions. The data were then analysed using content analysis and descriptive statistics.

    RESULTS: Of the 60 parents invited to the parenting programme, 58 participated in the sessions. The study showed that involving key individuals in the early stage of the parenting programme's implementation facilitated reaching Somali-born parents. To retain the programme participants, parents were offered free transportation. The programme was implemented and delivered as intended. A majority of the parents were satisfied with the programme and reported increased knowledge about children's rights and the support they could seek from social services.

    CONCLUSIONS: This study illustrates how a parenting support programme can be implemented for Somali-born parents and provides guidance on how to attract immigrant parents to and engage them in participating in parenting support programmes.

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  • 25.
    Palmcrantz, Susanne
    et al.
    Karolinska institutet.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Karolinska institutet.
    Eldh, Ann Catrine
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet.
    Holmqvist, Lotta Widén
    Karolinska institutet.
    Ehrenberg, Anna
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Tomson, Göran
    Karolinska institutet.
    Olsson, Christina B
    Karolinska institutet; Stockholm läns landsting.
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet.
    Assessing feasibility and acceptability of study procedures: getting ready for implementation of national stroke guidelines in out-patient health care2015In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 15, article id 517Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Even though Swedish national guidelines for stroke care (SNGSC) have been accessible for nearly a decade access to stroke rehabilitation in out-patient health care vary considerably. In order to aid future interventions studies for implementation of SNGSC, this study assessed the feasibility and acceptability of study procedures including analysis of the context in out-patient health care settings.

    METHODS: The feasibility and acceptability of recruitment, observations and interviews with managers, staff and patients were assessed, as well as the feasibility of surveying health care records.

    RESULTS: To identify patients from the the hospitals was feasible but not from out-patient care where a need to relieve clinical staff of the recruitment process was identified. Assessing adherence to guidelines and standardized evaluations of patient outcomes through health care records was found to be feasible and suitable assessment tools to evaluate patient outcome were identified. Interviews were found to be a feasible and acceptable tool to survey the context of the health care setting.

    CONCLUSION: In this feasibility study a variety of qualitative and quantitative data collection procedures and measures were tested. The results indicate what can be used as a set of feasible and acceptable data collection procedures and suitable measures for studying implementation of stroke guidelines in an out-patient health care context.

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  • 26. Palmcrantz, Susanne
    et al.
    Widen Holmqvist, Lotta
    Sommerfeld K., Disa
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    von Koch, Lena
    Differences between younger and older individuals in their use of care and rehabilitation but not in self-perceived global recovery 1 year after stroke2012In: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 321, no 1-2, p. 29-34Article in journal (Refereed)
    Abstract [en]

    Background: Although priorities in Swedish stroke care should be based on the ethical principles of equal care and greatest support to those in greatest need, being of working age (younger) or retired (older) might influence expectations on recovery and the provision of care and rehabilitation.

    Method: Information regarding the use of care and rehabilitation during the 1st year after stroke was retrieved from the Stockholm County Council database and the medical data was taken from the medical records. The Barthel Index was used for self-ratings of dependence pre-stroke, and the Stroke Impact Scale was used to assess self-perceived disability and a global rating of recovery at 12 months. One hundred and ninety-two individuals were included.

    Results: Results showed that the younger group received more care and rehabilitation than the older group. In the older group, comorbid conditions and pre-stroke dependence, estimated in accordance with the Barthel Index, were more common. The older group reported larger impact on self-perceived disability regarding strength, mobility, self-care and domestic life, while self-perceived global recovery did not differ between the groups.

    Conclusion: Younger individuals received more care and rehabilitation, which indicates structural inequality in the provision of health care resources. However, as no difference in self-perceived global recovery was found between the groups; the disparity in the provision of health care may also be a consequence of greatest support being given to those in greatest need. By demonstrating the necessity of involving self-rated assessments of stroke impact at different points in time and in different age groups, the results of this study add to previous knowledge of age-related differences in the provision of health care and stroke outcome. Furthermore. this suggests a way to approach evaluation of equality in the provision of health care.

  • 27.
    Sedelius, Helene
    et al.
    Dalarna University, School of Health and Welfare, Care Sciences. Dalarna University, School of Health and Welfare, Caring Science/Nursing. Centre for Clinical Research Dalarna-Uppsala University, Falun, Sweden; .
    Tistad, Malin
    Dalarna University, School of Health and Welfare, Medical Science. Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Bergsten, Ulrika
    R&D Department at Region Halland, Halmstad, Sweden.
    Dehlin, Mats
    Department of Rheumatology and Inflammation Research, Institution of Medicine, Sahlgrenska Academy, University of Gothenburg SE, Gothenburg, Sweden.
    Iggman, David
    Centre for Clinical Research Dalarna-Uppsala University, Falun, Sweden.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Svärd, Anna
    Centre for Clinical Research Dalarna-Uppsala University, Falun, Sweden.
    Professionals' perspectives on existing practice and conditions for nurse-led gout care based on treatment recommendations: a qualitative study in primary healthcare2022In: BMC Primary Care, ISSN 2731-4553, Vol. 23, no 1, article id 71Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Gout affects nearly 2 % of the population and is associated with repeated painful flares of arthritis. Preventive urate-lowering therapy is widely available, but only one third of patients receive adequate treatment. Lack of knowledge among healthcare professionals and patients within primary healthcare are implicated as partial explanations for this undertreatment. Nurse-led care has proved to be an effective model when treating patients with gout, but there is a need for more knowledge about factors that can be expected to influence the future implementation of such care. The aim of this study was to describe factors influencing existing gout care in primary healthcare and the conditions for a future implementation of nurse-led gout care based on national treatment recommendations.

    METHODS: In this qualitative study, focus group discussions with 56 nurses and physicians and individual interviews with eight managers were conducted at nine primary healthcare units in central Sweden. A deductive qualitative content analysis based on the main constructs of the framework Integrated Promoting Action on Research Implementation in Health Services was followed by an inductive analysis within the frames of the main constructs: innovation, recipients and context.

    RESULTS: Gout-related contacts with primary healthcare was described as being patient initiated, diagnostics was in some respects complex and nurse-led care was experienced as a favourable primary healthcare model in general (innovation). Gout was seen as a low-priority condition with acute flares and there was inadequate knowledge of gout, including preventive treatment (recipients). Primary healthcare was perceived as having a holistic but fragmented responsibility for gout care, recommendations against keeping waiting lists complicated follow-up appointments and a need for motivation and support when introducing new practices was emphasised (context).

    CONCLUSION: In this study, investigating the perspective of professionals, several factors were found to influence existing gout care. It will be crucial to target these factors in the development of a future implementation strategy.

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  • 28.
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Needs for, use of and satisfaction with health care services in the course of the first year after stroke: the perspective of people with stroke2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Background: Many people who have had a stroke report unmet needs for rehabilitation. There is, however, a lack of knowledge about what issues underlie the many unmet needs. Assessment tools are used in the health care services to identify the presence of disabilities, but it is not known to what extent patient expressed disabilities are identified in the assessment tools. There is also a lack of knowledge regarding changes over time in length of stay (LOS) at stroke units and subsequent rehabilitation after stroke.The general aim of this thesis was to generate new knowledge about needs for rehabilitation, use of and satisfaction with health care services in the course of the first year after stroke from the perspective of people with stroke. Method: Data was derived from an observational prospective longitudinal study of people diagnosed with a stroke who received care at the stroke units of Karolinska University Hospital 2006/2007 (n=349). Data was also taken from the control-group in a randomized controlled trial of people who received care at the same stroke unit during 1993/1996 (n=40). Data collection comprised baseline assessment and follow-ups at 3, 6 and 12 months. Data was collected using an open question, established assessment tools, medical records and the Stockholm County Council’s computerized registers for use of health care services. Analyses applied in the thesis were: in paper I a comparison of the perspective of people who have had a stroke (categories of self-reported problems in daily life) and the health care services’ perspective (results from three established assessment tools); in paper II and III multivariate logistic regression analyses, and in paper IV comparisons regarding LOS, recovery in activities of daily living (ADL) and patient satisfaction.Results: Fatigue was the most common self-reported problem that people experienced in daily life after stroke. Items/domains in three standardized assessment tools corresponded to only 15 of 24 categories of self-reported problems. Furthermore, the assessment tools failed to identify 0-57% of the selfreported problems in the 15 categories that had corresponding items/domains (paper I). Unmet needs for rehabilitation at 12 months were predicted by high impact on strength (on the affected side) at 3 months, and associated with high impact on hand function (on the affected side) and poor self-rated recovery at 12 months (paper II). Among participants with moderate/severe stroke, met needs for rehabilitation was associated with having seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (paper III). Dissatisfaction with care at 12 months was predicted by poor coping capacity and restrictions in participation at three months, and associated with poor coping capacity and strength (on the affected side) at 12 months (paper II). The LOS at the stroke unit was shorter for patients who received care during 2006/2007 compared to 1993/1996 (median 8 versus 13 days), but no difference in LOS was found regarding the total LOS (stroke unit and subsequent inpatient rehabilitation). The participants from 2006/07 were to larger extent independent in ADL at 3 months after stroke, but no difference at 12 months was revealed and both groups were equally satisfied with health care services received (paper IV).Conclusion; There is poor concurrence between the perspective of the people who have had a stroke and the perspective of the health care services regarding problems experienced in daily life after a stroke. If health care services are to be based on problems experienced by the people who have had a stroke, the use of assessment tools should be complemented by a dialogue. Extra attention should be paid to the rehabilitation needs of people with high impact on strength and hand function and poor recovery since these are more likely to experience unmet needs for rehabilitation. For people with moderate/severe stroke, continuity in rehabilitation and particularly physiotherapy during the first year after stroke seems to contribute to meeting their needs for rehabilitation. It seems possible to reduce the number of days a patient spends in the stroke unit after mild to moderate stroke and for them to spend these days in a rehabilitation unit instead, and yet achieve a faster recovery in ADL.

  • 29.
    Tistad, Malin
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Karolinska Institutet, Huddinge.
    Bergström, Anna
    Uppsala University, Akademiska sjukhuset, Uppsala.
    Elf, Marie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Eriksson, Leif
    Uppsala University, Akademiska sjukhuset, Uppsala.
    Gustavsson, Catharina
    Dalarna University, School of Health and Welfare, Medical Science. Center for Clinical Research Dalarna-Uppsala University, Falun; Uppsala University, Uppsala.
    Göras, Camilla
    Dalarna University, School of Health and Welfare.
    Harvey, Gill
    College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
    Källberg, Ann-Sofie
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Rudman, Ann
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Unbeck, Maria
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Karolinska Institutet, Huddinge.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing.
    Training and support for the role of facilitator in implementation of innovations in health and community care: a scoping review protocol.2023In: Systematic Reviews, E-ISSN 2046-4053, Vol. 12, no 1, article id 15Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Implementing and sustaining innovations in clinical practice, such as evidence-based practices, programmes, and policies, is frequently described as challenging. Facilitation as a strategy for supporting implementation requires a facilitator, i.e. an individual with a designated role to support the implementation process. A growing number of studies report that facilitation can help tackle the challenges in implementation efforts. To optimise the potential contribution of facilitation as a strategy to improve the implementation of new practices, there is a need to enhance understanding about what training and support is required for individuals in the facilitator role. The objective of this scoping review is to map how facilitators have been trained for, and supported in, the facilitator role in implementation studies in health and community care. Specifically, the review aims to examine what is reported on training and support of facilitators in terms of learning outcomes, content, dose, mode of delivery, learning activities, and qualifications of the trainers and how the facilitators perceive training and support.

    METHODS: This scoping review will follow the guidance of the Joanna Briggs Institute and the PRISMA Extension for Scoping Review checklist. We will include articles in which (a) facilitation is deployed as an implementation strategy, with identified facilitator roles targeting staff and managers, to support the implementation of specified innovations in health or community care, and (b) training and/or support of facilitators is reported. We will exclude articles where facilitation is directed to education or training in specific clinical procedures or if facilitation supports the implementation of general quality improvement systems. All types of peer-reviewed studies and study protocols published in English will be included. A systematic search will be performed in MEDLINE (Ovid), Embase (embase.com), Web of Science Core Collection, and CINAHL (Ebsco).

    DISCUSSION: The proposed scoping review will provide a systematic mapping of the literature on the training and support of implementation facilitators and contribute useful knowledge within the field of implementation science to inform future facilitation initiatives.

    SYSTEMATIC REVIEW REGISTRATION: Registered at Open Science Framework (registration https://doi.org/10.17605/OSF.IO/M6NPQ ).

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  • 30.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Karolinska institutet; Umeå universitet.
    Flink, Maria
    Ytterberg, Charlotte
    Eriksson, Gunilla
    Guidetti, Susanne
    Tham, Kerstin
    von Koch, Lena
    Resource use of healthcare services 1 year after stroke: a secondary analysis of a cluster-randomised controlled trial of a client-centred activities of daily living intervention2018In: BMJ Open, E-ISSN 2044-6055, Vol. 8, no 8, article id e022222Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of the study was to compare the total use of healthcare services in the course of the first year after a stroke between participants who, after the acute care, had received occupational therapy as a client-centred activities of daily living (ADL) intervention (CADL) and participants who had received usual ADL intervention (UADL).

    DESIGN: A secondary analysis of a multicentre cluster-randomised controlled trial (RCT).

    SETTING: Primary and secondary care in Sweden.

    PARTICIPANTS: Participants were included if they: (1) had received CADL or UADL in the RCT, either as inpatients in geriatric rehabilitation units or in their own homes, and (2) data could be retrieved about their use of healthcare services provided by the county council from computerised registers.

    INTERVENTIONS: CADL or UADL.

    OUTCOME MEASURES: Inpatient and outpatient healthcare in the course of the first year after stroke.

    RESULTS: Participants from 7 of the 16 units included in the RCT met the criteria. Participants in the CADL group (n=26) who received geriatric inpatient rehabilitation had a shorter length of hospital stay (p=0.03) than participants in the UADL group (n=46), and the CADL group with home rehabilitation (n=13) had fewer outpatient contacts (p=0.01) compared with the UADL group (n=25). Multiple regression analyses showed that in four of the models, a higher age was associated with a lower use of healthcare services. The use of healthcare services was also associated (some of the models) with dependence in ADL, stroke severity and type of rehabilitation received, CADL or UADL.

    CONCLUSIONS: The provision of client-centred occupational therapy after stroke did not appear to increase the use of healthcare services during the first year after stroke.rrrrr TRIAL REGISTRATION NUMBER: NCT01417585.

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  • 31.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Umeå universitet.
    Lundell, Sara
    Wiklund, Maria
    Nyberg, André
    Holmner, Åsa
    Wadell, Karin
    Usefulness and Relevance of an eHealth Tool in Supporting the Self-Management of Chronic Obstructive Pulmonary Disease: Explorative Qualitative Study of a Cocreative Process2018In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 5, no 4, article id e10801Article in journal (Refereed)
    Abstract [en]

    Background: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.

    Objective: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.

    Methods: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.

    Results: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.

    Conclusions: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

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  • 32.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet; Umeå universitet.
    Palmcrantz, Susanne
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet; Göteborgs universitet.
    Ehrenberg, Anna
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Örebro universitet.
    Olsson, Christina B.
    Tomson, Göran
    Lotta, Widén Holmqvist
    Gifford, Wendy
    Eldh, Ann Catrine
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet.
    Developing leadership in managers to facilitate the implementation of national guideline recommendations: a process evaluation of feasibility and usefulness2016In: International Journal of Health Policy and Management, ISSN 2322-5939, E-ISSN 2322-5939, Vol. 5, no 8, p. 477-486Article in journal (Refereed)
    Abstract [en]

    Background: Previous research supports the claim that managers are vital players in the implementation of clinical practice guidelines (CPGs), yet little is known about interventions aiming to develop managers’ leadership in facilitating implementation. In this pilot study, process evaluation was employed to study the feasibility and usefulness of a leadership intervention by exploring the intervention’s potential to support managers in the implementation of national guideline recommendations for stroke care in outpatient rehabilitation.

    Methods: Eleven senior and frontline managers from five outpatient stroke rehabilitation centers participated in a four-month leadership intervention that included workshops, seminars, and teleconferences. The focus was on developing knowledge and skills to enhance the implementation of CPG recommendations, with a particular focus on leadership behaviors. Each dyad of managers was assigned to develop a leadership plan with specific goals and leadership behaviors for implementing three rehabilitation recommendations. Feasibility and usefulness were explored through observations and interviews with the managers and staff members prior to the intervention, and then one month and one year after the intervention.

    Results: Managers considered the intervention beneficial, particularly the participation of both senior and frontline managers and the focus on leadership knowledge and skills for implementing CPG recommendations. All the managers developed a leadership plan, but only two units identified goals specific to implementing the three stroke rehabilitation recommendations. Of these, only one identified leadership behaviors that support implementation.

    Conclusion: Managers found that the intervention was delivered in a feasible way and appreciated the focus on leadership to facilitate implementation. However, the intervention appeared to have limited impact on managers’ behaviors or clinical practice at the units. Future interventions directed towards managers should have a stronger focus on developing leadership skills and behaviors to tailor implementation plans and support implementation of CPG recommendations.

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  • 33.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Umeå universitet.
    Sara, Lundell
    Wiklund, Maria
    Nyberg, André
    Holmner, Åsa
    Wadell, Karin
    Co-creating an eHealth tool to support self-management in COPD:perspectives on usefulness and relevance2018In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 5, no 4, article id e10801Article in journal (Refereed)
    Abstract [en]

    Background: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.

    Objective: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.

    Methods: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.

    Results: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.

    Conclusions: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

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  • 34.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Tham, Kerstin
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Ytterberg, Charlotte
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study2012In: BMC Neurology, E-ISSN 1471-2377, Vol. 12, article id 40Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation or dissatisfaction with health care services at 12 months after stroke.

    METHODS: The participants (n = 175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses.

    RESULTS: Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds ratio (OR) 7.05) at three months, and associated with hand function (SIS) (OR 4.38) and poor self-rated recovery (SIS) (OR 2.46) at 12 months. Dissatisfaction with care was predicted by SOC (OR 4.18) and participation (SIS) (OR 3.78), and associated with SOC (OR 3.63) and strength (SIS) (OR 3.08).

    CONCLUSIONS: Thirty-three percent of the participants reported unmet needs for rehabilitation and fourteen percent were dissatisfied with the care received. In order to attend to rehabilitation needs when they arise, rehabilitation services may need to be more flexible in terms of when rehabilitation is provided. Long term services with scheduled re-assessments and with more emphasis on understanding the experiences of both the patients and their social networks might better be able to provide services that attend to patients' needs and aid peoples' reorientation; this would apply particularly to those with poor coping capacity.

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  • 35.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service after stroke - How is the service implemented in clinical practice?2014Conference paper (Refereed)
  • 36.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service after stroke in its natural habitat – adherence to guidelines, outcome, resource use and costs2014Conference paper (Refereed)
  • 37.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Early supported discharge service in its natural habitat - how is the service implemented in clinical practice?2013Conference paper (Other academic)
  • 38.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    von Koch, Lena
    Karolinska institutet.
    Usual clinical practice for early supported discharge after stroke with continued rehabilitation at home: an observational comparative study2015In: PLOS ONE, E-ISSN 1932-6203, Vol. 10, no 7, article id e0133536Article in journal (Refereed)
    Abstract [en]

    Introduction: Based on randomised controlled trials, evidence exists that early supported discharge (ESD) from the hospital with continued rehabilitation at home has beneficial effects after stroke; however, the effects of ESD service in regular clinical practice have not been investigated. The purpose of the current study was to compare ESD service with conventional rehabilitation in terms of patient outcomes, caregiver burden at 3 and 12 months and the use and costs of healthcare during the first year after stroke.

    Material and methods: This study was a subgroup analysis of a longitudinal observational study of patients who received care in the stroke unit at Karolinska University Hospital in Sweden. Patients who met the inclusion criteria for ESD in previous experimental studies were included. The patients were referred to available rehabilitation services at discharge, and comparisons between those who received ESD service (the ESD group, n = 40) and those who received conventional rehabilitation (the NoESD group, n = 110) were performed with regard to independence in activities of daily living (ADL), the frequency of social activities, life satisfaction, and caregiver burden and the use and costs of healthcare during the first year after stroke.

    Results: At 3 and 12 months, no differences were observed with regard to patient outcomes; however, ESD was associated with a lower caregiver burden (p = 0.01) at 12 months. The initial length of stay (LOS) at the hospital was 8 days for the ESD group and 15 days for the NoESD group (p = 0.02). The median number of outpatient rehabilitation contacts was 20.5 for the ESD group (81% constituting ESD service) and 3 for the NoESD group (p<0.001). There was no difference between the groups with regard to overall healthcare costs.

    Conclusions: ESD service in usual clinical practice renders similar health benefits as conventional rehabilitation but a different pattern of resource use and with released capacity in acute stroke care.

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  • 39.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    von Koch, Lena
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle, Neurologkliniken Karolinska Universitetssjukhuset.
    Sjöstrand, Christina
    Institutionen för klinisk neurovetenskap, Karolinska Institutet, Neurologkliniken Karolinska Universitetssjukhuset.
    Tham, Kerstin
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    Ytterberg, Charlotte
    Karolinska Institutet, Institutionen för Neurobiologi, vårdvetenskap och samhälle.
    What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke - amount, place, operator or timing?2013In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 16, no 3, p. e24-35Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND OBJECTIVE: To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self-reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke.

    METHODS: The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self-reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home-based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset.

    RESULTS: Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (OR 8.36, CI 1.40-49.88 P = 0.020) were more likely to report met rehabilitation needs.

    CONCLUSION: For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self-reported met needs for rehabilitation.

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  • 40.
    Tistad, Malin
    et al.
    Dalarna University, School of Health and Welfare, Medical Science. Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm.
    Wallin, Lars
    Dalarna University, School of Health and Welfare, Caring Science/Nursing. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Carlström, Eric
    Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    A comparison of three organisational levels in one health care region in Sweden implementing person-centred care: coupled, decoupled or recoupled in a complex organisation2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 196Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Establishing more substantial patient involvement in the health care has become fundamental to Western health care services. Person-centred care (PCC) has been developed as a way of working that involve the patients and family members. However, the implementation of PCC in clinical practice has proven to be challenging. The aim of this study was to explore the congruence of managers' perceptions and understanding of various aspects of PCC across three organisational levels in one health care region in Sweden in terms of coupling, decoupling and recoupling.

    METHODS: A policy on increased patient participation in health care was adopted in one health care region in Sweden. This policy was embodied in the form of PCC and a support strategy for the implementation was put in place. Participants representing three organisational levels (senders: politicians, n = 3; messengers: senior management, n = 7; and receivers: middle- and frontline managers, n = 13) were interviewed and documents collected. A deductive qualitative content analysis was performed and findings from the three organisational levels compared.

    RESULTS: Descriptions of PCC at all the three organisational levels included health care provided in partnership between provider and patient. However, messengers and receivers also included aspects of how work was organised as part of the concept. Representatives at all levels expected high-quality care while reducing health care costs as an outcome, however, messengers and receivers also anticipated improvements in the work environment and reduced staff turnover. Strategies to support implementation included continuation and enhancement of existing routines that were considered person-centred and development of new ones. A need to make PCC less 'fuzzy' and ambiguous and instead communicate a more tangible care process was described. Representatives among messengers and receivers also suggested that no actions were needed because the practice was already considered person-centred.

    CONCLUSION: The findings indicated that congruence between organisational levels existed in some aspects, suggesting coupling between policy and practice. However, also incongruences were identified that might be due to the fuzziness of definitions and the application of PCC in practice, and the difficulty in assessing the level of patient-centredness in clinical practice.

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  • 41.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    Sjotrand, Christina
    Holmqvist, Lotta Widen
    von Koch, Lena
    Shorter length of stay in the stroke unit: comparison between the 1990s and 2000s2012In: Topics in Stroke Rehabilitation, ISSN 1074-9357, E-ISSN 1945-5119, Vol. 19, no 2, p. 172-181Article in journal (Refereed)
    Abstract [en]

    Purpose: The process ruling length of stay (LOS) in hospitals is complex, and changes over time in LOS have not been explored. The purpose of the study was to examine differences in LOS, use of and satisfaction with health-related services, and capacity in activities of daily living (ADLs) during the first year post stroke in 2 groups of patients with mild to moderate stroke who received care in the same stroke unit.

    Method: The patients (1993/96, n=40; 2006/07, n=43) in this study received care in the stroke unit at Karolinska University Hospital, Huddinge, Sweden. Data on LOS and on the use of health-related services were collected from the Stockholm County Council computerized registers. Satisfaction with health-related services was assessed using a questionnaire covering different dimensions of care, while ADLs were assessed using Katz Extended Index of ADL.

    Results: The LOS in the stroke unit was shorter in the 2006-2007 group (median 8 days) compared to the 1993-1996 group (13 days) (P < .001). Both groups were equally satisfied with health-related services received. A larger proportion of patients were independent in ADLs 3 months post stroke in the 2006-2007 group, but no difference was seen at 6 or 12 months post stroke.

    Conclusion: It seems possible to reduce the number of days spent in the stroke unit after mild to moderate stroke and instead spend days in a rehabilitation unit, and yet achieve similar patient satisfaction and faster recovery in ADL.

  • 42.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Different perspectives on disability three months after stroke: a mixed methods approach2011In: 16th Nordic Congress on Cerebrovascular Diseases, Tallinn, Estland, 2011Conference paper (Refereed)
    Abstract [en]

    Abstract Background A substantial number of people who have suffered a stroke perceive unmet needs for rehabilitation and other health care services. Disability is one of the phenomena underlying people’s need for health care services and disability/problems can be viewed both from the perspective of people with stroke (felt problems), and from the perspective of health professionals (assessed problems). Objective The aim was to describe the felt problems three months after stroke and to explore the concurrence between the felt problems and the assessed problems. Method The patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected by posing an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons between the felt problems and the assessed problems performed. Result Fatigue was the category with the largest number of felt problems (n=58, 28%). Fourteen out of the 28 categories of felt problems, had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to identify 16-57% of the felt problems whereas the SIS failed to identify 0-33%. Conclusion There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments has to be complemented by open questions and dialogue if the health care services are to be based on the problems experienced by the patients.

  • 43.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Different perspectives on disability three months after stroke: a mixed methods approach2011In: 20th European Stroke Conference, Hamburg, Tyskland, 2011Conference paper (Refereed)
    Abstract [en]

    Abstract Background People who have suffered a stroke perceive to a large extent unmet needs of rehabilitation. Needs of health care services can be viewed from the perspective of the phenomena underlying the need i.e. the disability/problems and also from the perspective of the people with stroke as well as the health professionals. The aim was to describe disability/problems from the perspective of the people with stroke, represented by felt problems, reported by patients three months after stroke and to examine if there were differences between men and women. A further aim was to explore the concurrence between the perspective of the people with stroke (felt problems) and the perspective of the health professionals (assessed problems). Methods The patients (n=203) received care at the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected using an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories with felt problems were identified and comparisons performed. Results Fatigue was the category in which the largest number of patients reported felt problems (n=58, 28%). More women than men had felt problems in the category Acquisition, meals and housework (p=0.01) whereas more men had felt problems in the categories Employment (p=0.02) and Driving (p=0.009). Fourteen out of the 28 categories of felt problems had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to capture 16-57 % of the felt problems whereas the SIS failed to capture 0-33 %. Conclusion There was a substantial lack of concurrence between felt and assessed problems indicating that the use of assessment tools has to be complemented with open questions if health services are to address the problems experienced by the patients.

  • 44.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Poor concurrence between disability as described by patients and established assessments tools three months after stroke2011In: Conference on Advances in Health Care Science Research, Stockholm, 2011Conference paper (Refereed)
    Abstract [en]

    A substantial number of people who have suffered a stroke perceive unmet needs for rehabilitation and other health care services. Disability is one of the phenomena underlying people’s need for health care services and disability/problems can be viewed both from the perspective of people with stroke (felt problems), and from the perspective of health professionals (assessed problems). The aims were to describe the felt problems three months after stroke and to explore the concurrence between the felt problems and the assessed problems. The patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, collected by posing an open question, were categorized. Results from three established assessment tools: Katz Extended Index of ADL (KE); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons the felt problems and the assessed problems performed. Fatigue was the category with the largest number of felt problems (n=58, 28%). Fourteen out of the 28 categories of felt problems, had corresponding items/domains in the KE/ BI and the SIS. The KE/BI failed to identify 16-57% of the felt problems whereas the SIS failed to identify 0-33%. There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments has to be complemented by open questions and dialogue if the health care services are to be based on the problems experienced by the patients.

  • 45.
    Tistad, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Medical Science.
    Ytterberg, Charlotte
    Tham, Kerstin
    von Koch, Lena
    Poor concurrence between disability as described by patients and established assessments tools three months after stroke: a mixed methods approach2012In: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 313, no 1-2, p. 160-166Article in journal (Refereed)
    Abstract [en]

    Background. Disability/problems, one phenomenon underlying people's need for health care services, can be viewed both from the perspectives of people with stroke (felt problems), and the health professionals (assessed problems). Objective The aim was to describe felt problems three months after stroke and to explore the concurrence between felt problems and assessed problems.

    Method. The patients (n = 203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, drawn from an open question, were categorized. Results from established assessment tools: Katz Extended Index of ADL (KI); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons performed.

    Result. The category Fatigue had the largest number of felt problems (n = 58, 28%). Fourteen out of the 24 categories of felt problems had corresponding items/domains in the assessment tools. KE/BI failed to identify 16–57% and SIS 0–33% of the felt problems.

    Conclusion. There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments should be complemented by a dialog if health services are to be based on problems experienced by the patients.

  • 46. Ytterberg, Charlotte
    et al.
    Kristensen, Hanne Kaae
    Tistad, Malin
    Dalarna University, School of Education, Health and Social Studies, Medical Science. Karolinska Institutet.
    von Koch, Lena
    Factors related to met needs for rehabilitation 6 years after stroke2020In: PLOS ONE, E-ISSN 1932-6203, Vol. 15, no 1, article id e0227867Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Research on stroke rehabilitation mainly concerns the first year of recovery, and there is a lack of knowledge regarding long-term rehabilitation needs and associated factors.

    AIM: The aim was to explore the perceived needs for rehabilitation services of people six years after stroke and factors associated with having rehabilitation services needs met.

    METHODS: The study was a 6-year follow up of a prospective study on the rehabilitation process after stroke. Data on perceived needs for rehabilitation, personal factors, disease specific factors, and patient-reported disability were collected through face-to-face interviews in the participants' homes. Logistic regression models were created to explore associations between having rehabilitation services needs met in 11 problem areas (dependent variable) and the independent variables: involvement in decisions regarding care and treatment, sex, age, sense of coherence, self-defined level of private financing, stroke severity, frequency of social everyday activities, perceived impact of stroke, and life satisfaction.

    RESULTS: The 121 participants had a mean age of 63 years at stroke onset and 58% were men. In all problem areas the majority (53-88%) reported having needs met at six years after stroke, however 47% reported unmet needs regarding fatigue and 45% regarding mobility. A lower perceived impact on participation was found to be associated with having rehabilitation services needs met in seven problem areas: mobility, falls, pain, fatigue, concentration, memory, and sight. The strongest association for having needs met was found for the independent variable, involvement in care and treatment, within the three problem areas mobility, falls, and speaking.

    CONCLUSION: In a long-term perspective, there were several modifiable factors associated with having rehabilitation services needs met. The most prominent were perceived involvement in care and treatment, and perceived participation. These factors had a stronger association with having rehabilitation services needs met than disease specific factors six years after stroke.

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