Activity and Participation Ten Years after Stroke

This project aims to increase the knowledge about the long-term life situation of people ageing with stroke, with a specific focus on activities of daily living, out-of-home activities and participation in social and civic life. The project is designed for Anna Norlander’s PhD thesis. However, since also Emma Carlstedt’s PhD project is based on studies on stroke and consequences in daily life, one of the sub-studies will also be part of her thesis.

Activity and participation post stroke
About 25,000 persons experience a stroke each year in Sweden. Due to advances in medical care the survival rate has increased greatly, though many stroke survivors face different types of physical or cognitive impairments. This can lead to difficulties in managing daily life and restrictions in activity and participation.

Research has shown that participation in physical as well as social activities are related to improved survival and health throughout the lifespan, and enabling an active and participating life for persons with disabilities is an important task for the health sector.

To be able to implement effective measures there is a need for knowledge regarding which individuals are at greatest risk for activity and participation restrictions, and an improved understanding of factors that hinder or promote an active lifestyle in a long term perspective. There is also a need for more precise methods to evaluate such aspects.

Aims of the project
1. Develop and implement a methodology based on the International Classification of Functioning and Health (ICF), making more valid analyzes and presentation of data on activity and participation possible.

2. Identify predictors (from 16 months post stroke) for community, social and civic life ten years after stroke.

3. Deepen the understanding of stroke survivors’ experiences from living with the consequences of stroke during a period of 15 years, with specific attention to mobility, activity and participation.

4. Describe the ten-year trajectory of health aspects such as participation in social and leisure activities among people surviving a first-ever stroke.

5. Describe activity and participation among survivors ten years after a first-ever stroke and explain potential differences related to gender, age and other personal and environmental factors.

Methods
The project is largely based on longitudinal data available in the Lund Stroke Register, including comprehensive assessments of 416 first-ever stroke patients from the catchment area of Skåne University Hospital in Lund. Follow-ups were performed at four months, 16 months and ten years post stroke.

Ten years after stroke, data from all the survivors possible to reach (N=145) were collected, including additional detailed self-reported information on activity, social participation and transportation. In addition, qualitative interview data will be collected up to 12 years post stroke.

The first part of the project focuses on two assessment instruments commonly used in stroke populations, the Barthel Index and a modified version of the Frenchay Activities Index. An ICF-oriented analysis of the instruments provided a base for the forthcoming studies. We have also presented descriptive results on the long-term activity level of ten-year stroke survivors within different activity areas.

The second study makes use of multiple regression analyses to identify long-term predictors of participation in social and leisure activities based on data gathered at 16 months and ten years after stroke.

The third and fourth study will be based on in-depth interviews with a sub-sample of the stroke survivors and their relatives. Qualitative analysis, applying a grounded theory methodology, will be used to further understand the long-term processes that influence participation in social and leisure activities over time.

Importance
The project will add knowledge important for the quality and effectiveness of rehabilitation interventions in early and later stages post stroke as well as for the planning of social services, development of the provision of mobility devices, planning of the built environment and public transport.