Long-term recovery trajectory after stroke: an ongoing negotiation between body, participation and self

Abstract

Purpose: Research has mainly focused on the first year of recovery trajectory after stroke, but there is limited knowledge about how stroke survivors manage their long-term everyday lives. This study seeks to fill this gap by exploring the long-term (1–13 years) negotiations of stroke survivors when they experience progress, wellbeing and faith in the future. Method: Repeated in-depth interviews were conducted with nine people living with moderate impairment after stroke and their closest relatives. Concepts from phenomenology and critical psychology constituted the frame of reference of the study. Results: The long-term stroke recovery trajectory can be understood as a process of struggling to overcome tensions between three phenomena under ongoing change: the lived body, participation in everyday life and sense of self. During the recovery process, stroke survivors experience progress, well-being and faith in the future when moving towards renewed relationships, characterised by (1) a modified habitual body, (2) repositioned participation in specific everyday life contexts and (3) a transformed sense of self. Conclusions: This study stresses the importance of developing new forms of professional support during the long-term recovery trajectory, to stimulate and increase interaction and coherence in the relationship between the stroke survivor's bodily perception, participation in everyday life and sense of self.

Implications for Rehabilitation

• The study deepening how the long-term recovery trajectory after stroke is about ongoing embodied, practical and socially situated negotiations.

• The study demonstrates that the recovery trajectory is a long term process of learning where the stroke survivor, as an embodied agent, gradually modifies new bodily habits, re-position participation and transforming of the self.

• Health personnel are usually available in the acute and early rehabilitation period. The three phenomenons under ongoing change; “body”, “participation” and “self” are at this point just about being moved toward a renewed and a more coherent relationship in the stroke survivor long-lasting everyday life situated recovery trajectory.

• Available rehabilitation services at the municipal level supporting stroke survivors and relatives practical, social and interpersonal long-term challenges in everyday life can be important for minimizing their struggles and for promoting the experience progress, wellbeing and faith in the future.

• Body
• long-term recovery trajectory
• participation
• self
• stroke

Acknowledgements

The author thanks the participating patients, relatives, and health practitioners that made this study possible.

Declaration of interest

The authors report no conflicts of interest. The authors are jointly responsible for the writing and content of the paper. This study was funded by the Norwegian Extra Foundation for Health and Rehabilitation, University Hospital of North Norway and University of Tromsø.