Participation and autonomy five years after stroke: A longitudinal observational study

Stroke is the second most common cause of disability in the world. The purpose of this study was to evaluate the participation and autonomy of persons with stroke, five years after a stroke, and to explore potential associations between factors and perceived restrictions in participation and autonomy.

This five-year follow-up survey study included individuals diagnosed with a first-time stroke during 2009-2010, in Gothenburg. The survey included the Impact of Participation and Autonomy-questionnaire (IPA-E), which comprised five domains: Autonomy Indoor, Family Role, Autonomy Outdoor, Work & Education, and Social Life & Relationships. Logistic regression analyses were used to analyze factors associated with participation restrictions.

At 5 years after a stroke, 457 patients were alive; of these, 281 responded to the follow-up survey. Participation restrictions were most pronounced in the IPA-E domains of Autonomy Outdoors, Work/Education, and Social Life and Relationships. In contrast, restrictions were less pronounced in the IPA-E domains of Autonomy Indoors and Family Role. Severe stroke, older age, and female sex predicted participation restrictions at five years after a stroke. Participation restrictions were partly explained by feelings of depression at five years after stroke. Problems associated with participation restrictions were most frequently observed in the areas of mobility, leisure, and help/support from other people.

This study showed that participation and autonomy were restricted among persons with stroke at five years after the stroke. The domains perceived as most restricted were those that required high levels of physical, social, and cognitive abilities.