Hard return: the development and transformation process of social participation in stroke survivors; a qualitative study and initial theory

Abstract

Objectives: Given the characteristic of high disability rates, the successful return of stroke patients to society is increasingly becoming a serious challenge. This study aimed developing a theory to reveal the development and transformation process of social participation among stroke survivors as a foundation for creating strategies to improve their social participation. Design: A constructivist grounded theory approach using data from in-depth semi-structure interviews. Setting: The settings were various, including the stroke follow-up clinic, rehabilitation institutions, subjects’ homes, park, work unit, and rest home in Shanghai, China. Subjects: In all, 36 stroke survivors who have passed through the acute phase and returned home participated in this study to share their experiences of social participation and processes of changes from September 2017 to January 2019. Results: A substantive theory on the development and transformation process of social participation among stroke survivors was generated, which included four process ingredients: “in-orbit,” “off-orbit,” “returning orbit,” and “in-orbit again.” The core concept “hard return” revealed not only the tough development process but also the unsatisfactory change results. Both participation abilities and participation willingness had an important impact on social participation and also played a significant role in driving its development. Conclusion: This study has identified the development process of social participation in stroke survivors and “hard-return” suggests not only the tough process but also unsatisfactory results. Interventions targeted process ingredients seem to be potentially promising to improve stroke survivors’ social function outcomes.