Participation in everyday occupations among persons with stroke in Iran: An exploration of perceived participation, associated factors and lived experience

Abstract: The general aim of this thesis was to explore and describe perceived participation in everyday occupations, and the factors associated with participation among persons with stroke in a sample from Iran. Furthermore, the aim was to describe and understand the lived experience of participation in everyday occupations following stroke. This thesis was based on four studies. The first three studies were performed using quantitative methods and the last study used a qualitative method. In Study I the focus was on producing the Persian version of the Impact on Participation and Autonomy (IPA) questionnaire and the psychometric evaluation of the translated version to be used for persons with stroke. In Study II perceived participation and autonomy was described among persons with stroke, and different aspects of functioning and contextual factors associated with participation after stroke were explored and identified in the sample. In Study III the Persian translated version of the Occupational Gaps Questionnaire (OGQ) and the LiSat-11 checklist were produced and psychometrically evaluated to use for persons with stroke. Moreover, this study focused on describing occupational gaps after stroke and exploring their relation to different aspects of functioning and perceived life satisfaction. In Study IV the lived experience of participation in everyday occupations was explored among persons with stroke using the phenomenological approach. The findings of Study I demonstrated that participation can be measured as two different but related dimensions, performance-based participation and social-based participation. The findings of Study II showed that most participation restrictions were perceived in autonomy outdoors activities. It also identified physical function, mood state, and access to caregiving services as the most influential variables associated with dimensions of participation. The findings of Study III supported the psychometric properties of the Persian versions of the OGQ and the LiSat-11, and found “helping and supporting others” and instrumental activities of daily living to be the most common occupations in which individuals perceived gaps in participation. This study also identified the combination of three factors of physical function (including ADL ability), motor function and perceived life satisfaction as being the most influential factors associated with occupational gaps after stroke. The findings of Study IV showed that in order for individuals to adapt to their new life after stroke and be able to live their life, both doing and identity should be addressed in rehabilitation as the aspects defining the phenomenon of participation. In conclusion, this thesis contributes by generating new knowledge regarding the definition of the concept of participation. The findings highlight the importance of both dimensions in the facilitation of adaptation and participation in everyday occupations. Moreover, this thesis emphasises the importance of providing culturally sensitive rehabilitation based on the individuals’ needs and consistent with the sociocultural context when planning appropriate rehabilitation interventions. As a first exploration of participation in everyday occupations after stroke in an Iranian context, this thesis provides instruments for measuring participation and life satisfaction for use in clinical practice and research within rehabilitation in Iran.