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Fu V, Thompson S, Kayes N, Bright F. Supporting Long-Term Meaningful Outcomes in Stroke Rehabilitation. Curr Neurol Neurosci Rep 2025; 25:17. [PMID: 39899076 DOI: 10.1007/s11910-025-01403-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/15/2025] [Indexed: 02/04/2025]
Abstract
PURPOSE OF REVIEW Rehabilitation is the mainstay of recovery after stroke, but key recommendations focused on delivering 'as much therapy as possible' and stroke survivor outcome measures have remained relatively unchanged for decades. Traditional therapy approaches focus on maximum improvement of physical impairments while a stroke survivor is in hospital to ensure that community discharge can be deemed 'safe'. This narrow approach sidelines the outcomes that are meaningful to the stroke survivor in the long term and the challenges they may face within their social context. In this article, we highlight the importance of the whole-person approach and review recent research introducing novel considerations to optimise outcomes after stroke. RECENT FINDINGS Psychosocial well-being is a major component of health but is poorly acknowledged and managed for stroke survivors. Evidence supports the use of self-management interventions, peer befriending, and culturally - responsive methods, including deep engagement with Indigenous and cultural knowledge. Cultural safety and involvement of a stroke survivor's important personal connections are also vital for achieving truly person-centred care and equity in rehabilitation outcomes. Outcomes in rehabilitation will be optimised if we shift our mindsets from a sole focus on improving physical impairments to a broader scope of delivering whole-person care.
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Affiliation(s)
- Vivian Fu
- Calgary Stroke Program, Dept of Clinical Neurosciences, University of Calgary, Calgary, Canada.
- Medical Research Institute of New Zealand, Aotearoa, Wellington, New Zealand.
| | - Stephanie Thompson
- Te Whatu Ora - Capital Coast and Hutt Valley, Older Adults, Rehabilitation, and Allied Health Service, Lower Hutt, New Zealand
- Department of Medicine, University of Otago, Aotearoa, Wellington, New Zealand
| | - Nicola Kayes
- Centre for Person Centred Research, School of Clinical Sciences, Auckland University of Technology, Aotearoa, Auckland, New Zealand
| | - Felicity Bright
- Centre for Person Centred Research, School of Clinical Sciences, Auckland University of Technology, Aotearoa, Auckland, New Zealand
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Charalambous M, Kountouri A, Phylactou P, Triantafyllidou I, Annoni JM, Kambanaros M. The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis. RESEARCH INVOLVEMENT AND ENGAGEMENT 2022; 8:48. [PMID: 36064623 PMCID: PMC9446531 DOI: 10.1186/s40900-022-00379-1] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 01/03/2022] [Accepted: 08/19/2022] [Indexed: 06/15/2023]
Abstract
BACKGROUND Patient and Public Involvement (PPI) is the active partnership between researchers, patients and laypeople in the process of creating research. PPI in stroke aphasia research aims to ensure equal opportunities for informed decision-making and guarantee democratic representation of patient partners within the research team. Yet, little is known about the factors that hinder and/or promote the autonomous involvement of people with aphasia in stroke and aphasia PPI projects. This study aimed to explore the views and perspectives of people who live with chronic stroke, with and without aphasia, with experience in research prior to stroke, on their potential involvement as research partners. METHODS The research team included a PPI partner with chronic stroke-induced aphasia. Semi-structured interviews were conducted online with people with chronic stroke (n = 8), four with aphasia and four without. Interviews were subject to thematic analysis. RESULTS Inductive thematic analysis generated four themes: (1) the kinds of Restrictions that make involvement in research difficult, (2) the preferred levels and ways of Involvement during the research process, (3) the Support required for active and collaborative involvement, and (4) the Impact of their involvement and how it benefits the study's outcomes. CONCLUSION People experiencing chronic stroke and aphasia are willing to be involved as PPI partners if the research team provides the necessary support. Recommendations for researchers to consider before commencing co-produced research with people with stroke and aphasia are provided.
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Affiliation(s)
- Marina Charalambous
- Laboratory of Cognitive and Neurological Sciences, Faculty of Science and Medicine, University of Fribourg, Chemin du Musée 8, 1700 Fribourg, Switzerland
- Department of Rehabilitation Sciences, Cyprus University of Technology, 30 Arch. Kyprianos Str. 3036, Limassol, Cyprus
| | - Alexia Kountouri
- Solidarity Network Nicosia In Action” (NicInAct), Multifunctional Foundation, Nicosia Municipality, Eptanisou 11, 1016 Nicosia, Cyprus
| | - Phivos Phylactou
- Department of Rehabilitation Sciences, Cyprus University of Technology, 30 Arch. Kyprianos Str. 3036, Limassol, Cyprus
| | - Ioanna Triantafyllidou
- Department of Rehabilitation Sciences, Cyprus University of Technology, 30 Arch. Kyprianos Str. 3036, Limassol, Cyprus
| | - Jean-Marie Annoni
- Laboratory of Cognitive and Neurological Sciences, Faculty of Science and Medicine, University of Fribourg, Chemin du Musée 8, 1700 Fribourg, Switzerland
| | - Maria Kambanaros
- Allied Health and Human Performance, University of South Australia, Adelaide, SA Australia
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Elf M, Klockar E, Kylén M, von Koch L, Ytterberg C, Wallin L, Finch T, Gustavsson C, Jones F. Tailoring and Evaluating an Intervention to Support Self-management After Stroke: Protocol for a Multi-case, Mixed Methods Comparison Study. JMIR Res Protoc 2022; 11:e37672. [PMID: 35522476 PMCID: PMC9123550 DOI: 10.2196/37672] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/02/2022] [Revised: 03/22/2022] [Accepted: 03/24/2022] [Indexed: 11/13/2022] Open
Abstract
Background Self-management programs are recognized as a valuable approach to supporting people with long-term conditions, such as stroke, in managing their daily lives. Bridges Self-Management (Bridges) focuses on how practitioners interact and support patients’ confidence, skills, and knowledge, and it is an example of a complex intervention. Bridges has been developed and used across multiple health care pathways in the United Kingdom and is theoretically informed by social cognition theory and self-efficacy principles. Evidence shows that self-management programs based on the construct of self-efficacy can be effective. There is still much to learn about how health care services or pathways should implement support for self-management in a sustainable way and whether this implementation process is different depending on the context or culture of the team or service provided. Objective The aim of this study is to tailor and evaluate an intervention (Bridges) to support self-management after stroke in a Swedish context. Methods We will use a pretest-posttest design with a case study approach to evaluate the feasibility and implementation of self-management support in two stroke settings. This project includes a complex intervention and depends on the actions of individuals, different contexts, and the adaptation of behavior over time. A mixed methods approach was chosen to understand both outcomes and mechanisms of impact. Data collection will comprise outcome measurements and assessment tools as well as qualitative interviews. Data will be collected concurrently and integrated into a mixed methods design. Results Recruitment and data collection for the first site of the project ran from September 1, 2021, to January 17, 2022. The intervention at the first site was conducted from November 1, 2021, to March 5, 2022. The evaluation will start after the implementation phase. The second site has been recruited, and the baseline data collection will start in spring 2022. The intervention will start in early autumn 2022. Data collection will be completed by the end of 2022. Conclusions This study represents a unique, highly relevant, and innovative opportunity to maximize knowledge and minimize practice gaps in rehabilitation stroke care. The study will produce robust data on the intervention and in-depth data on the contextual factors and mechanisms related to the feasibility of the intervention and for whom it is feasible. Bridges has been used in the United Kingdom for more than 10 years, and this study will explore its contextualization and implementation within a Swedish stroke environment. The evaluation will study results at the patient, staff, and organizational levels and provide recommendations for the adoption and refinement of future efforts to support self-management. International Registered Report Identifier (IRRID) DERR1-10.2196/37672
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Affiliation(s)
- Marie Elf
- School of Health and Welfare, Dalarna University, Falun, Sweden
| | - Erika Klockar
- School of Health and Welfare, Dalarna University, Falun, Sweden
| | - Maya Kylén
- School of Health and Welfare, Dalarna University, Falun, Sweden.,Department of Health Sciences, Lund University, Lund, Sweden
| | - Lena von Koch
- Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.,Theme Neuro Karolinska University Hospital, Stockholm, Sweden
| | - Charlotte Ytterberg
- Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.,Women's Health and Allied Health Professionals Theme, Medical Unit Occupational Therapy and Physiotherapy, Karolinska University Hospital, Stockholm, Sweden
| | - Lars Wallin
- School of Health and Welfare, Dalarna University, Falun, Sweden
| | - Tracy Finch
- Department of Nursing, Midwifery and Health, Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne, United Kingdom
| | - Catharina Gustavsson
- School of Health and Welfare, Dalarna University, Falun, Sweden.,Center for Clinical Research Dalarna, Uppsala University, Falun, Sweden.,Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
| | - Fiona Jones
- Faculty of Health and Social Care Sciences, Kingston University and St George's, University of London, London, United Kingdom
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