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Publications (10 of 23) Show all publications
Sturge, J., Nordin, S., Pilosof, N. P., Vogt, T., Janus, S. I., Ludden, G., . . . Glazer, J. (2025). How to age right and care(fully) at home? A protocol for a multistage comparative study of ageing in place and hospital at home care across three countries. BMJ Open, 15(4), Article ID e096385.
Open this publication in new window or tab >>How to age right and care(fully) at home? A protocol for a multistage comparative study of ageing in place and hospital at home care across three countries
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2025 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 15, no 4, article id e096385Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Ageing right care(fully) is a transnational research study which explores and maps an understanding of the care pathways between ageing in place and hospital at home policy and practices for older adults in Israel, the Netherlands and Sweden. The countries are suited to be compared where they have growing, ageing populations, a focus on healthcare reform and several policies to reduce the cost of care for older populations. Ageing in place is a government-led policy that is often associated with choice; however, there is a recent debate about whether ageing in place is a universal desire for all older adults. Research shows that the care pathway between the hospital and the home, associated with ageing in place, can impact well-being, especially if the built, social and technological environments do not meet the healthcare needs and preferences of older adults. This is significant as new programmes for digital hospital at home innovations are being developed as part of a global transformation in healthcare systems. The aim of the study is to compare different approaches to ageing in place and hospital at home care in different regions. The multiapproach study explores the demographics, policy structure, decision-making process and the crucial role of the built, social and technological environments along the hospital to home care pathways of older adults.

METHODS AND ANALYSIS: The mixed-method, comparative study includes a new multienvironment theoretical contribution explored across a three-phase research method to understand the care pathways of older adults ageing in place receiving hospital at home care. The first phase compares each country's population and policy structures relating to ageing in place, hospital discharge, home hospitalisation and at-home care for older adults. The second phase maps patient journeys of older adults living in each country through the perspective of the older adult, caregivers and care professionals. The third phase explores the synergies between the knowledge gained through phases 1 and 2-from a policy and a personal level-and mobilises the knowledge into policy recommendations and implementation guidelines.

ETHICS AND DISSEMINATION: The comparative study has been approved by the Sheba Medical Centre in Israel (SMC-1330-24), the Ethics Committee of Tel Aviv University (0009216-2), the Humanities and Social Science Ethics Committee at the University of Twente in the Netherlands (240040) and the Swedish Ethical Review Authority (Dnr 2024-07569-01). The results will be shared with end-users, including citizens, carers, healthcare policymakers, planners, architects and designers, through social media, publications, workshops and international conferences. This future-focused research approach will allow stakeholders to rethink and imagine ways that health and care systems can be personalised and responsive to the future needs of older adult populations.

Keywords
Aging, Digital Technology, Health policy, Hospital to Home Transition, Patient Navigation
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Geriatrics Nursing
Identifiers
urn:nbn:se:du-50445 (URN)10.1136/bmjopen-2024-096385 (DOI)001457823100001 ()40180409 (PubMedID)2-s2.0-105001837080 (Scopus ID)
Available from: 2025-04-09 Created: 2025-04-09 Last updated: 2025-10-09Bibliographically approved
Falk Johansson, M., Taei, A., McCarthy, L., Gustavsson, C., Tomsone, S., Kylén, M. & Elf, M. (2025). Instruments for assessing social support in social networks and in the self-management and rehabilitation process of persons poststroke: a scoping review protocol. BMJ Open, 15(10), 1-5, Article ID e106975.
Open this publication in new window or tab >>Instruments for assessing social support in social networks and in the self-management and rehabilitation process of persons poststroke: a scoping review protocol
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2025 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 15, no 10, p. 1-5, article id e106975Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: As care and rehabilitation poststroke are increasingly moving into persons' home environment, the importance of support from social networks in self-management and rehabilitation has emerged as an important topic for research and practice. While there are instruments used to assess social support and collective efficacy, a clearer scope of the availability and quality of these instruments is needed. This clarification will enable the development of interventions integrating social network perspectives in poststroke rehabilitation.

METHODS AND ANALYSIS: To assess the availability and quality of instruments assessing social support and collective efficacy, a scoping review will be conducted and reported following the Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews guidelines (PRISMA-ScR). Literature searches conducted between 14 November 2024 and 15 November 2024 in the CINAHL and PubMed/Medline databases resulted in 4631 articles potentially eligible. After removing duplicates, 4121 articles' titles and abstracts were initially screened. Full-text screening, searches of reference lists and data extraction started in June 2025. Starting August 2025, two reviewers will assess the full texts against the inclusion criteria in Covidence using a coding template. Identified instruments will be appraised following the COSMIN (Consensus-based Standards for the selection of health Measurement INstruments guidelines) and analysed using a narrative descriptive method. Results will be reported in February 2026 according to PRISMA-ScR guidelines.

ETHICS AND DISSEMINATION: Ethical approval is not required for this scoping review, as it does not involve primary data. However, this review follows established ethical guidelines and best practices, and included studies will be reviewed to ensure that they received ethical approval and included informed consent. Results from the review will be disseminated through an article in a scientific journal, at relevant conferences and surmised to stroke organisations. A policy brief will be developed for health and social care professionals and policy makers.

Keywords
Rehabilitation medicine, Social Support, Stroke
National Category
Public Health, Global Health and Social Medicine Nursing
Identifiers
urn:nbn:se:du-51506 (URN)10.1136/bmjopen-2025-106975 (DOI)001594785500001 ()41093326 (PubMedID)
Available from: 2025-10-28 Created: 2025-10-28 Last updated: 2025-11-03Bibliographically approved
de Vries, L., Kylén, M., Svensson, T., Sturge, J., Lipson-Smith, R., Schmidt, S. M., . . . Elf, M. (2025). Stakeholder Perspectives on Built Environmental Factors to Support Stroke Rehabilitation and Return to Everyday Life. Health Expectations, 28(4), Article ID e70339.
Open this publication in new window or tab >>Stakeholder Perspectives on Built Environmental Factors to Support Stroke Rehabilitation and Return to Everyday Life
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2025 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 28, no 4, article id e70339Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The transition to undertaking rehabilitation in the home or local neighbourhood calls for an extensive understanding of which aspects of the built environment are important for people with stroke.

OBJECTIVE: This qualitative study aims to explore how home and local neighbourhood environments support or hinder rehabilitation for people who have had a stroke from the perspectives of various stakeholders.

METHODS: Through a purposive selection method, data were collected through semi-structured interviews with 16 stakeholders: people with stroke (n = 3), significant others (n = 3), healthcare professionals (n = 4), care managers (n = 3) and architects (n = 3). Content analysis was used to identify patterns and create themes.

FINDINGS: Sixteen stakeholders, including 12 women and 4 men aged 30-74, participated in this study. Our findings identify areas linked to the WHO age-friendly environment framework, which addresses environmental limitations relevant to stroke rehabilitation. The categories used and factors identified: (1) Outdoor environments: accessibility, safety and supportiveness. (2) Transport and mobility: accessible and reach central services. (3) Housing: adaptations, layout and accessibility. (4) Social participation: spaces that are varied and flexible. (5) Social inclusion and non-discrimination: shared decision-making. (6) Civic engagement and employment: supporting environments. (7) Communication and information: digital accessibility. (8) Community and health services: patient-centred approach and access to varied rehabilitation.

CONCLUSION: This study brings together multiple perspectives from key stakeholders with experience within stroke care. By integrating insights, these findings highlight how built environmental factors in the home and local neighbourhood can support the transition to home-based rehabilitation, which can improve recovery and return to everyday life. In turn, this study contributes to the innovative development of home and neighbourhood environments to influence and support stroke rehabilitation. Linking the findings to the WHO framework increases our understanding of a supportive environment for people with stroke, but also for people with other long-term conditions.

PATIENT OR PUBLIC CONTRIBUTION: This qualitative study is part of a comprehensive research project '(Built Environments to support rehabilitation for people with stroke, B-SURE)', which aims to investigate how factors in the built environment influence stroke rehabilitation and to develop built environment solutions. B-SURE has a participatory methodology that essentially includes and involves the stakeholders in the multiple stages of the study and ensures an iterative and collaborative process.

Keywords
built environment, home rehabilitation, life after stroke, person‐centred, qualitative method, rehabilitation process, stroke recovery
National Category
Occupational Therapy Public Health, Global Health and Social Medicine Neurology
Identifiers
urn:nbn:se:du-50857 (URN)10.1111/hex.70339 (DOI)001520960400001 ()40600503 (PubMedID)2-s2.0-105009707362 (Scopus ID)
Available from: 2025-07-15 Created: 2025-07-15 Last updated: 2025-11-13Bibliographically approved
McCarthy, L., Kylén, M., Gustavsson, C., Finch, T., Jones, F. & Elf, M. (2025). Supporting someone after their stroke: family members' views and experiences of self-management. Disability and Rehabilitation, 1-8
Open this publication in new window or tab >>Supporting someone after their stroke: family members' views and experiences of self-management
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2025 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, p. 1-8Article in journal (Refereed) Epub ahead of print
Abstract [en]

PURPOSE: Self-management has increased in recognition in stroke research and rehabilitation along with growing trends of shorter hospital stays and more patient-centred care. Family members are key persons in the self-management process, but their views and experiences of self-management have not been studied in detail. This study aimed to explore family members' understanding of self-management, the strategies they use and the challenges they face when providing support.

METHODS: For this descriptive study, semi-structured interviews with family members (n = 27) were conducted. Data were analysed using inductive content analysis.

RESULTS: The analysis resulted in three main categories and eight subcategories. Most family members saw self-management as performing practical tasks, such as daily living activities and rehabilitation training. However, family members described a broad range of actions to support self-management, including emotional and motivational support. They found it challenging to give the right amount of support and expressed a need of more information after discharge.

CONCLUSIONS: Family members' conceptualisations of self-management differ from the strategies they use to provide support. A clearer understanding of self-management as a collective process can benefit the development and delivery of efficient self-management support.

Keywords
Stroke, family, qualitative, self-management, social support
National Category
Nursing
Identifiers
urn:nbn:se:du-50597 (URN)10.1080/09638288.2025.2500067 (DOI)40340606 (PubMedID)2-s2.0-105004722188 (Scopus ID)
Available from: 2025-05-13 Created: 2025-05-13 Last updated: 2025-10-09Bibliographically approved
Elf, M., Lipson-Smith, R., Kylén, M., Saa, J. P., Sturge, J., Miedema, E., . . . Anåker, A. (2024). A Systematic Review of Research Gaps in the Built Environment of Inpatient Healthcare Settings. Health Environments Research & Design Journal, 17(3), 372-394
Open this publication in new window or tab >>A Systematic Review of Research Gaps in the Built Environment of Inpatient Healthcare Settings
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2024 (English)In: Health Environments Research & Design Journal, ISSN 1937-5867, E-ISSN 2167-5112, Vol. 17, no 3, p. 372-394Article, review/survey (Refereed) Published
Abstract [en]

OBJECTIVE: This study utilized the evidence-gap map method and critically examined the scope, methodologies, and focus of the studies that investigated the influence of the built environment on inpatient healthcare settings over a decade (2010-2021).

METHODS: We conducted a systematic review per the preferred reporting items for systematic reviews and meta-analyses guidelines and surveyed 406 articles, primarily from North America and Europe.

RESULTS: Our findings revealed a dominant focus on architectural features (73%), such as room design and ward layout. Comparatively, there was less emphasis on interior-, ambient-, social-, and nature-related features. Most previous studies explored multiple environmental features, which indicated the intricacy of this field. Research outcomes were diverse, with person-centered care (PCC) being the most frequently investigated, followed by safe care, emotional well-being, activity, and behavior. Furthermore, research methods varied considerably based on the study's outcomes and features. Clinical outcomes and safe care favored quantitative methods, activity and behavior favored mixed methods, and PCC favored qualitative research.

CONCLUSION: This review provides an in-depth overview of the existing studies on healthcare design research and sheds light on the current trends and methodological choices. The insights garnered can guide future research, policy-making, and the development of healthcare facilities.

Keywords
built environment, evidence-based design, evidence-gap map, healthcare architecture, healthcare settings, hospital, systematic review
National Category
Nursing
Identifiers
urn:nbn:se:du-48643 (URN)10.1177/19375867241251830 (DOI)001234237300001 ()38807411 (PubMedID)2-s2.0-85194886817 (Scopus ID)
Available from: 2024-06-04 Created: 2024-06-04 Last updated: 2025-10-09Bibliographically approved
McCarthy, L., Kylén, M., Gustavsson, C., Finch, T., Jones, F. & Elf, M. (2024). Familjemedlemmars syn på och upplevelser av att stötta egenvård efter stroke. In: : . Paper presented at XV Stroketeam kongress 2024, Göteborg, 3-4 oktober 2024.
Open this publication in new window or tab >>Familjemedlemmars syn på och upplevelser av att stötta egenvård efter stroke
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2024 (Swedish)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:du-49414 (URN)
Conference
XV Stroketeam kongress 2024, Göteborg, 3-4 oktober 2024
Available from: 2024-09-26 Created: 2024-09-26 Last updated: 2025-10-09Bibliographically approved
Elf, M., Norin, L., Meijering, L., Pessah-Rasmussen, H., Suhonen, R., Zingmark, M. & Kylén, M. (2024). Rehabilitation at Home With the Development of a Sustainable Model Placing the Person's Needs and Environment at Heart: Protocol for a Multimethod Project. JMIR Research Protocols, 13, Article ID e56996.
Open this publication in new window or tab >>Rehabilitation at Home With the Development of a Sustainable Model Placing the Person's Needs and Environment at Heart: Protocol for a Multimethod Project
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2024 (English)In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 13, article id e56996Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Each year, more than 1.5 million people in Europe have a stroke, and many experience disabilities leading to activity and participation restrictions. Home-based rehabilitation is the recommended approach for stroke rehabilitation, in line with the international shift to integrated care. Despite this, rehabilitation often focuses on the person's physical functions, not the whole life situation and opportunities to live an active life. Given that rehabilitation today is often provided in the person's home, there is a need to develop new models that consider the rehabilitation process as situated in the everyday living environment of persons with stroke. This project is grounded in experiences from our ongoing research, where we study the importance of the home environment for health and participation among persons with stroke, rehabilitated at home. This research has shown unmet needs, which lead to suboptimal rehabilitation outcomes. There is a need for studies on how to use environmental resources to optimize stroke rehabilitation in the home setting.

OBJECTIVE: The overarching objective of the project is to develop a new practice model for rehabilitation where the needs of the person are the starting point and where the environment is considered.

METHODS: The project will be conducted in partnership with persons with stroke, significant others, health care professionals, and care managers. Results from a literature review will form the base for interviews with the stakeholders, followed by co-designing workshops aiming to create a new practice model. Focus groups will be held to refine the outcome of the workshops to a practice model.

RESULTS: This 4-year project commenced in January 2023 and will continue until December 2026. The results of the literature review are, as of April 2024, currently being analyzed. The ethics application for the interviews and co-design phase was approved in October 2023 and data collection is ongoing during spring 2024. We aim to develop a practice model with stakeholders and refine it together with care managers and decision makers. The outcome is a new practice model and implementation plan, which will be achieved in autumn 2026.

CONCLUSIONS: The project contributes with a prominent missing puzzle to optimize the rehabilitation process by adding a strong focus on user engagement combined with integrating different aspects of the environment. The goal is to improve quality of life and increase reintegration in society for the large group of people living with the aftermath of a stroke. By co-designing with multiple stakeholders, we expect the model to be feasible and sustainable. The knowledge from the project will also contribute to an increased awareness of the importance of the physical environment for sustainable health care. The findings will lay the foundation for future upscaling initiatives.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56996.

Keywords
co-design, early supported discharge, home, integrated care, life space mobility, multi-methods, person-centered care, physical environment, social environment, stroke rehabilitation
National Category
Nursing
Identifiers
urn:nbn:se:du-49256 (URN)10.2196/56996 (DOI)001296646500006 ()39042448 (PubMedID)2-s2.0-85200855688 (Scopus ID)
Funder
Swedish Research Council Formas, 2022-00584
Available from: 2024-08-26 Created: 2024-08-26 Last updated: 2025-10-09Bibliographically approved
McCarthy, L., Kylén, M., Gustavsson, C., Finch, T., Jones, F. & Elf, M. (2024). Supporting after stroke: significant others’ understanding of and perceived role in self-management. In: : . Paper presented at European Life After Stroke Forum 2024, Dublin, 11-12 March 2024.
Open this publication in new window or tab >>Supporting after stroke: significant others’ understanding of and perceived role in self-management
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2024 (English)Conference paper, Poster (with or without abstract) (Other academic)
Abstract [en]

Background and aims Self-management support is important in persons adaptation to a new life after stroke. Significant others often provide a meaningful part of that support. The impact on family members caring for a person after stroke has been extensively studied, however there is a lack of research into significant others’ understanding and experiences of self-management after stroke. Therefore, this study aimed to explore how significant others understand self-management and how they perceive their role in supporting self-management in post-stroke rehabilitation at home.

Method Qualitative, semi-structured interviews were conducted with 28 significant others of persons in rehabilitation after stroke. Data were analysed using inductive content analysis.

Results The preliminary results showed that significant others commonly relate self- management to activities of daily living (ADL) and rehabilitation training. Participants saw their role as important not only to assist the stroke survivor practically, but also to provide emotional support and companionship.

Conclusion There is an emerging discrepancy between descriptions in the literature and significant others’ perceptions of and actions to support self-management. If significant others obtained a clearer understanding of the concept of self- management, their support could be more efficient in strengthening self-efficacy and self-management abilities in stroke survivors.

How will this research improve life after stroke for stroke survivors? By highlighting the characteristics of significant others’ self-management support and their understanding of the concept, interventions to enhance self-managementsupport for stroke survivors can be improved in the future.

National Category
Nursing
Identifiers
urn:nbn:se:du-49328 (URN)
Conference
European Life After Stroke Forum 2024, Dublin, 11-12 March 2024
Available from: 2024-09-09 Created: 2024-09-09 Last updated: 2025-10-09Bibliographically approved
Klockar, E., Kylén, M., McCarthy, L., Koch, L. v., Gustavsson, C., Jones, F. & Elf, M. (2024). The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation. Journal of Patient-Reported Outcomes, 8, Article ID 55.
Open this publication in new window or tab >>The Swedish Stroke Self-Efficacy Questionnaire: translation and cross-cultural adaptation
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2024 (English)In: Journal of Patient-Reported Outcomes, E-ISSN 2509-8020, Vol. 8, article id 55Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To translate and cross-culturally adapt the Stroke Self-Efficacy Questionnaire (SSEQ) from English to Swedish and to evaluate psychometric properties of the questionnaire.

METHODS: A cross-sectional study design, where the translation followed a process including initial translation, synthesis, backward translation, expert committee, and pretest. Content validity was assessed using Content validity index (CVI). Psychometric assessments included floor-ceiling effects and internal consistency.

RESULTS: Language and cultural congruence were achieved, and content validity index scores were high (0.923-1). The psychometric evaluations provided acceptable outcomes concerning internal consistency, with Cronbach's alpha scores for the total scale (0.902), the activities subscale (0.861) and the self-management subscale (0.818) respectively. Ceiling effects were evident, but no floor effects.

CONCLUSION: This study found the Swedish version of the SSEQ promising as a tool for assessment of self-efficacy in a Swedish stroke care setting, although further psychometric assessments are recommended in future studies.

Keywords
Cross-cultural, Questionnaire, Rehabilitation, Self-efficacy, Stroke
National Category
Nursing Neurosciences
Identifiers
urn:nbn:se:du-48713 (URN)10.1186/s41687-024-00735-7 (DOI)001243636100001 ()38837039 (PubMedID)2-s2.0-85195246861 (Scopus ID)
Available from: 2024-06-11 Created: 2024-06-11 Last updated: 2025-10-09Bibliographically approved
Kylén, M., Sturge, J., Lipson-Smith, R., Schmidt, S. M., Pessah-Rasmussen, H., Svensson, T., . . . Elf, M. (2023). Built Environments to Support Rehabilitation for People With Stroke From the Hospital to the Home (B-Sure): Protocol for a Mixed Method Participatory Co-Design Study. JMIR Research Protocols, 12, Article ID e52489.
Open this publication in new window or tab >>Built Environments to Support Rehabilitation for People With Stroke From the Hospital to the Home (B-Sure): Protocol for a Mixed Method Participatory Co-Design Study
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2023 (English)In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 12, article id e52489Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: A global trend is to move rehabilitation closer to people's neighborhoods and homes. Still, little attention has been given to how the built environment outside the hospital setting might impact rehabilitation and recovery for stroke survivors.

OBJECTIVE: The overarching objective of this project is to develop conceptual models of built environments that support stroke rehabilitation and recovery outside the hospital setting. Specifically, the project will explore factors and characteristics of the built environment that support people with stroke and their families and identify innovative built environments that can be designed for local health care. The project will examine facilitators and obstacles for implementing built environmental solutions and evaluate the potential benefits, feasibility, and acceptability.

METHODS: The project uses a mixed methods design approach with 3 phases. In phase 1, factors and characteristics of the built environment for rehabilitation will be identified. Based on the results from phase 1, phase 2 will involve co-designing prototypes of environments to support the rehabilitation process for people with stroke. Finally, the prototypes will be evaluated in phase 3. Qualitative and quantitative methods will include a literature review, a concept mapping (CM) study, stakeholder interviews, prototype development, and testing. The project will use multidimensional scaling, hierarchical cluster analysis, descriptive statistics for quantitative data, and content analysis for qualitative data. Location analysis will rely on the location-allocation model for network problems, and the rule-based analysis will be based on geographic information systems data.

RESULTS: As of the submission of this protocol, ethical approval for the CM study and the interview study has been obtained. Data collection is planned to start in September 2023 and the workshops later in the same year. The scoping review is ongoing from January 2023. The CM study is ongoing and will be finalized in the spring of 2024. We expect to finish the data analysis in the second half of 2024. The project is a 3-year project and will continue until December 2025.

CONCLUSIONS: We aim to determine how new environments could better support a person's control over their day, environment, goals, and ultimately control over their recovery and rehabilitation activities. This "taking charge" approach would have the greatest chance of transferring the care closer to the patient's home. By co-designing with multiple stakeholders, we aim to create solutions with the potential for rapid implementation. The project's outcomes may target other people with frail health after a hospital stay or older persons in Sweden and anywhere else. The impact and social benefits include collaboration between important stakeholders to explore how new environments can support the transition to local health care, co-design, and test of new conceptual models of environments that can promote health and well-being for people post stroke.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52489.

Keywords
accessibility, built environment, good quality and local care, meaningful activities, participation, participatory co-design, person-centered, self-efficacy, stroke rehabilitation
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:du-47255 (URN)10.2196/52489 (DOI)001114840300008 ()37943590 (PubMedID)2-s2.0-85180295745 (Scopus ID)
Available from: 2023-11-16 Created: 2023-11-16 Last updated: 2025-11-13Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-2887-3674

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