Activity and participation long term after stroke
(2019) In Lund University, Faculty of Medicine Doctoral Dissertation Series 2019(55).- Abstract
- Background and aim: As an increasing number of people are living and ageing with the consequences ofstroke, the rehabilitation and support provided for this group needs to have a long-term perspective. Moreover,to prevent long-term activity limitations and participation restrictions after stroke, increased knowledge is neededregarding how engagement in different types of activities develops beyond the first years of recovery andadaptation. As such engagement is complex and multifaceted it needs to be studied from different perspectivesand using well-defined methods of assessment.Thus, the overarching aim of this thesis was to contribute to animproved understanding of how activity and participation develops up to 15 years after stroke and... (More)
- Background and aim: As an increasing number of people are living and ageing with the consequences ofstroke, the rehabilitation and support provided for this group needs to have a long-term perspective. Moreover,to prevent long-term activity limitations and participation restrictions after stroke, increased knowledge is neededregarding how engagement in different types of activities develops beyond the first years of recovery andadaptation. As such engagement is complex and multifaceted it needs to be studied from different perspectivesand using well-defined methods of assessment.Thus, the overarching aim of this thesis was to contribute to animproved understanding of how activity and participation develops up to 15 years after stroke and of factors thatmay influence this process.Participants and methods: The first two sub-studies of the thesis are based on longitudinal follow-up data froma sample of 145 stroke survivors consecutively included in the Lund Stroke Register during a one-year periodand followed up after ten years with high retention rate. The second and third study builds on qualitative datafrom a sub-sample of the original participants, consisting of ten stroke survivors and four of their familiymembers, all interviewed 15 years after stroke.Methods include an ICF-oriented conceptual analyzis of the Barthel Index (BI) and the modified FrenchayActivities Index (mFAI), and descriptive analysis of activity performance ten years after stroke as assesd bythese two instruments. In addition, long-term predictors of the frequency of performing social and lesiureactivities ten years after stroke were identified through multiple regression analysis using follow-up data from 16months after the stroke. Finally, the subjective experiences of social and lesiure participation long-term afterstroke were explored using a grounded theory approch, focusing on personal and environmental conditions andindividual strategies.Main results and conclusions: The results show that the BI and the mFAI together cover 69 % of the ‘activitiesand participation’ component of the ICF core set for stroke and largely focus on different types of activities.Although most of the ten-year survivors were independent in self-care and basic mobility, performance of othertypes of activies varied substantially. In total, 23 % were rated as inactive, whereas the majority reported a highor moderate activity level ten years after stroke. The regression analyses resulted in a total of five significantpredictors. A wide social network, ability to walk a few hundred meters, and driving a car at 16 months after thestroke was related to a higher frequency of social and leisure activities after ten years, whereas an age >75years was related to a lower activity. The qualitative findings revealed that personal characteristics, access toactivities, social networks, motivation, and perceived capacity are central to engagement in social and leisureactivities after stroke. Furthermore, the strategies used to engage in such activities are based on individualgoals and contexts, and result from balancing different priorities in life and evaluating costs and rewards ofengagement. In conclusion, rehabilitation and support can be needed at different stages after stroke to meet thechanging needs of long-term stroke survivors, and should focus on supporting stroke survivors and their familiesto understand and handle the long-term consequences of stroke in all areas of life, including social and leisuredomains. (Less)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/c8d02e3d-6577-4367-bf2b-f3b0cfa28d19
- author
- Norlander, Anna LU
- supervisor
- opponent
-
- docent Johansson, Sverker, Karolinska Institutet, Stockholm
- organization
- publishing date
- 2019
- type
- Thesis
- publication status
- published
- subject
- keywords
- Assessment instruments, ICF, Leisure activities, Long-term, Participation, Predictors, Rehabilitation, Social activities, Stroke, Qualitative Research
- in
- Lund University, Faculty of Medicine Doctoral Dissertation Series
- volume
- 2019
- issue
- 55
- pages
- 85 pages
- publisher
- Lund University: Faculty of Medicine
- defense location
- Föreläsningssalen, Health Science Centre, Baravägen 3 i Lund
- defense date
- 2019-05-29 09:00:00
- ISSN
- 1652-8220
- ISBN
- 978-91-7619-784-4
- project
- Activity and Participation Ten Years after Stroke
- language
- English
- LU publication?
- yes
- id
- c8d02e3d-6577-4367-bf2b-f3b0cfa28d19
- date added to LUP
- 2019-05-06 11:52:55
- date last changed
- 2021-04-16 11:52:28
@phdthesis{c8d02e3d-6577-4367-bf2b-f3b0cfa28d19,
abstract = {{Background and aim: As an increasing number of people are living and ageing with the consequences ofstroke, the rehabilitation and support provided for this group needs to have a long-term perspective. Moreover,to prevent long-term activity limitations and participation restrictions after stroke, increased knowledge is neededregarding how engagement in different types of activities develops beyond the first years of recovery andadaptation. As such engagement is complex and multifaceted it needs to be studied from different perspectivesand using well-defined methods of assessment.Thus, the overarching aim of this thesis was to contribute to animproved understanding of how activity and participation develops up to 15 years after stroke and of factors thatmay influence this process.Participants and methods: The first two sub-studies of the thesis are based on longitudinal follow-up data froma sample of 145 stroke survivors consecutively included in the Lund Stroke Register during a one-year periodand followed up after ten years with high retention rate. The second and third study builds on qualitative datafrom a sub-sample of the original participants, consisting of ten stroke survivors and four of their familiymembers, all interviewed 15 years after stroke.Methods include an ICF-oriented conceptual analyzis of the Barthel Index (BI) and the modified FrenchayActivities Index (mFAI), and descriptive analysis of activity performance ten years after stroke as assesd bythese two instruments. In addition, long-term predictors of the frequency of performing social and lesiureactivities ten years after stroke were identified through multiple regression analysis using follow-up data from 16months after the stroke. Finally, the subjective experiences of social and lesiure participation long-term afterstroke were explored using a grounded theory approch, focusing on personal and environmental conditions andindividual strategies.Main results and conclusions: The results show that the BI and the mFAI together cover 69 % of the ‘activitiesand participation’ component of the ICF core set for stroke and largely focus on different types of activities.Although most of the ten-year survivors were independent in self-care and basic mobility, performance of othertypes of activies varied substantially. In total, 23 % were rated as inactive, whereas the majority reported a highor moderate activity level ten years after stroke. The regression analyses resulted in a total of five significantpredictors. A wide social network, ability to walk a few hundred meters, and driving a car at 16 months after thestroke was related to a higher frequency of social and leisure activities after ten years, whereas an age >75years was related to a lower activity. The qualitative findings revealed that personal characteristics, access toactivities, social networks, motivation, and perceived capacity are central to engagement in social and leisureactivities after stroke. Furthermore, the strategies used to engage in such activities are based on individualgoals and contexts, and result from balancing different priorities in life and evaluating costs and rewards ofengagement. In conclusion, rehabilitation and support can be needed at different stages after stroke to meet thechanging needs of long-term stroke survivors, and should focus on supporting stroke survivors and their familiesto understand and handle the long-term consequences of stroke in all areas of life, including social and leisuredomains.}},
author = {{Norlander, Anna}},
isbn = {{978-91-7619-784-4}},
issn = {{1652-8220}},
keywords = {{Assessment instruments; ICF; Leisure activities; Long-term; Participation; Predictors; Rehabilitation; Social activities; Stroke; Qualitative Research}},
language = {{eng}},
number = {{55}},
publisher = {{Lund University: Faculty of Medicine}},
school = {{Lund University}},
series = {{Lund University, Faculty of Medicine Doctoral Dissertation Series}},
title = {{Activity and participation long term after stroke}},
url = {{https://lup.lub.lu.se/search/files/63825148/e_spik_Anna.pdf}},
volume = {{2019}},
year = {{2019}},
}