Loss, Gain, and the Reframing of Perspectives in Long-Term Stroke Survivors: A Dynamic Experience of Quality of Life

Abstract

Purpose: Little is known about stroke survivors’ subjective quality of life experience. The purpose of this study was to understand the lived experience of quality of life in 6 long-term stroke survivors. Method: Using a phenomenological design, we interviewed participants (who were 21 months to 11 years post stroke) twice and gave them journals to write in between interviews. Data were evaluated using thematic analysis. Results: The main theme, “It makes me feel like a human again,” integrates 2 subthemes – activity loss: “That’s what I miss” and awakening: “Reality comes to your world.” The main theme describes quality of life as a constantly changing experience, and the subthemes elaborate on the process of change. Conclusion: Themes described quality of life as a dynamic experience that changed as activities of value were lost or gained and as participants experienced changes in their perspectives, beliefs, values, and behaviors. The discussion examines these themes through the lens of the Model of Human Occupation and the Shifting Perspectives Model of Chronic Illness. Clinical implications of the results are also discussed.

Keywords:

• lived experience
• phenomenology
• qualitative
• quality of life
• stroke