| 1. |
- Carlstedt, Emma, et al.
(författare)
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Stroke survivors’ preferences regarding study participation in rehabilitation research
- 2022
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Ingår i: BMC Medical Research Methodology. - : Springer Science and Business Media LLC. - 1471-2288. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: To pursue high quality research, successful participant recruitment is essential, but recruitment rates are often low. This is specifically true in target populations with impairments, for instance, among stroke survivors. Previous studies focusing on recruitment have mainly relied on information from professionals, and there is therefore a need to contribute with new methodological insights to how potential rehabilitation research participants describe their interest and preferences to participate in research. The purpose of this study was to generate knowledge about stroke survivors’ interest in participating in rehabilitation research, reasons for being interested or not, and preferred forms and foci of rehabilitation interventions. An additional aim was to describe preferences regarding survey administration modes and processes for recruitment to studies. Method: This cross-sectional study recruited Swedish residents who had sustained a stroke, initially by using advertisement on the National Stroke Association’s website, flyers posted at local occupational and physical therapy offices and at local stroke/senior organization meetings. Secondly, participants were recruited through a local stroke register. The survey, administered either in a paper form returned by postal mail; online or as a phone interview with 128 stroke survivors. Results: Most of the participants were interested in participating in rehabilitation research, particularly younger persons (p = 0.001) and those closer to stroke onset (p = 0.047). Contribution to research, possibility to try new rehabilitation interventions and meeting others in the same situation were reasons that attracted an interest to participate. Other important aspects were related to motivation, individual needs, as well as how skilled the people who provided the intervention were. Participants preferred group-based programs, and programs focusing on regaining lost functions were highly requested. A majority wanted to be contacted through postal mail (70%) and most of them (90%) used the paper form to respond to the survey. Conclusions: A range of personal and external aspects, including challenges related to digitized administration modes, should be considered to achieve high participation rates in rehabilitation research targeting stroke survivors. The importance of addressing individual needs and prerequisites in an individualized manner should not be underestimated and might be a useful strategy to recruitment success.
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| 2. |
- Jönsson, Ann-Cathrin, et al.
(författare)
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Functional Status and Patient-Reported Outcome 10 Years After Stroke: The Lund Stroke Register.
- 2014
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Ingår i: Stroke: a journal of cerebral circulation. - 1524-4628. ; 45:6, s. 1784-1790
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Tidskriftsartikel (refereegranskat)abstract
- Long-term studies of outcome after stroke are scarce. Our aim was to study functional status and patient-reported outcome 10 years after a first-ever stroke.Ten-year follow-up was conducted among the survivors from a population-based group of 416 patients included in the Lund Stroke Register, Sweden, between March 1, 2001, and February 28, 2002. The Barthel index was used to assess the functional status and the modified Rankin Scale to assess the degree of disability. The EQ-5D scale was used for survivors’ self-reports about health outcome and the specific Short-Form 36 (SF-36) question for rating their overall health. The patients also reported their frequency of physical activity.Among 145 survivors 10 years after stroke (median age, 78 years), 59% were men, 90% lived in their ordinary housing, 73% were assessed as independent, and 71% had no or slight disability. The need of assistance with mobility and self-care was reported by 14% and with usual activities by 22%. Moderate pain was reported by 39%, and 4% had a high degree of pain. Moderate anxiety/depression was reported by 28% and high degree only by 1%. Overall health status was reported in positive terms by more than two thirds of the survivors. Almost half the cohort reported the same frequency of physical activity (≥4× weekly) as before stroke onset.This study indicates that 10-year stroke survivors in Sweden are mostly independent in daily activities and report good overall health and frequent physical activity, although half of them are ≥78 years.
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| 3. |
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| 4. |
- Norlander, Anna, et al.
(författare)
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Living and ageing with stroke : an exploration of conditions influencing participation in social and leisure activities over 15 years
- 2018
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Ingår i: Brain Injury. - : Informa UK Limited. - 0269-9052 .- 1362-301X. ; 32:7, s. 858-866
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore conditions influencing long-term participation in social and leisure activities among people who have had a stroke. Methods: This study had a qualitative design, using a grounded theory methodology. Data collection was based on in-depth interviews performed 15 years after a first-ever stroke with 10 persons recruited from a population-based stroke cohort in Sweden. The study also included four family members. Findings: Over time, the stroke meant a changed but gradually normalised life situation. Participation in social and leisure activities was influenced by several transacting personal and contextual conditions changing with time and ageing. Central conditions that emerged from the analysis included personal characteristics, having social and supportive networks, being dependent on others, having access to valued activities and contexts, being motivated to participate, and perceiving sufficient capacity to participate. Conclusions: Long-term participation after stroke is possible despite impairments, but is influenced by a range of personal and environmental conditions. Stroke rehabilitation should be based on an awareness of this influence and address conditions that change with time and ageing during different phases after stroke.
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| 5. |
- Norlander, Anna, et al.
(författare)
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Long-Term Predictors of Social and Leisure Activity 10 Years after Stroke.
- 2016
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 11:2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Restrictions in social and leisure activity can have negative consequences for the health and well-being of stroke survivors. To support the growing number of people who are ageing with stroke, knowledge is needed about factors that influence such activity in a long-term perspective. AIM: To identify long-term predictors of the frequency of social and leisure activities 10 years after stroke. METHOD: 145 stroke survivors in Sweden were followed-up at16 months and 10 years after a first-ever stroke. Data representing body functions, activities & participation, environmental factors and personal factors at 16 months after stroke, were used in multiple linear regression analyses to identify predictors of the activity frequency after 10 years, as assessed by the 'Community, social and civic life' sub-domain of the Frenchay Activities Index (FAI-CSC). RESULTS: At the 10-year follow-up the frequency of social and leisure activities varied considerably among the participants, with FAI-CSC scores spanning the entire score range 0-9 (mean/median 4.9/5.0). Several factors at 16 months post stroke were independently related to the long-term activity frequency. The final regression model included four significant explanatory variables. Driving a car (B = 0.999), ability to walk a few hundred meters (B = 1.698) and extent of social network (B = 1.235) had a positive effect on activity frequency, whereas an age ≥ 75 years had a negative effect (B = -1.657). This model explained 36.9% of the variance in the FAI-CSC (p<0.001). CONCLUSION: Stroke survivors who drive a car, have the ability to walk a few hundred meters and have a wide social network at 16 months after a first-ever stroke are more likely to have a high frequency of social and leisure activities after 10 years, indicating that supporting outdoor mobility and social anchorage of stroke survivors during rehabilitation is important to counteract long-term inactivity.
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| 6. |
- Norlander, Anna, et al.
(författare)
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Participation in social and leisure activities while re-constructing the self : understanding strategies used by stroke survivors from a long-term perspective
- 2022
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:16, s. 4284-4292
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To further understand social and leisure (SL) participation after stroke and how it can be supported in a long-term perspective, this study aims to deepen the understanding of strategies used by long-term stroke survivors in relation to SL activities. Materials and methods: The study has a qualitative design, using a grounded theory approach, and is based on in-depth interviews with 10 persons who had a stroke 15 years ago and four of their family members. Results: The findings comprise nine different strategies used by the participants. These had two overarching purposes; to protect and re-construct the post-stroke self and to enable participation in valued SL activities despite challenges. The findings are summarized in one overarching theme: “Employing different strategies to balance costs and rewards of engagement in social and leisure activities”. Conclusions: Strategies for SL participation involves balancing different priorities in life and can change over time as they are continuously influenced by various personal and environmental conditions. These findings contribute to an improved understanding of why and how people hold on to activities, give up activities and find new activities after a stroke. It also highlights the need for a long-term perspective on stroke rehabilitation and support.IMPLICATIONS FOR REHABILITATION Re-engagement in social and leisure activities after stroke is a long-term process and various types of support may be needed during different stages of recovery and adaptation. Successful rehabilitation interventions build on an understanding of each individual’s priorities, goals and strategies and how these may change or manifest over time. Special attention should be given to the individual’s perception of costs and benefits in relation to engagement in activities, and the role that it has for the person’s identity. By providing knowledge and supporting the use of adequate coping strategies, rehabilitation professionals can help patients find a new and accepted post-stroke identity.
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