Balancing everyday life two years after falling ill with Guillain-Barré syndrome: a qualitative study

Abstract

Purpose: The aim was to describe experiences of disability in everyday life and managing the recovery process two years after falling ill with Guillain-Barré syndrome. Design: Qualitative interview study. Methods: Interviews were conducted with 35 persons (22 male, mean age 50 years) two years after the onset of Guillain-Barré syndrome. The interviews were transcribed verbatim and analysed using content analysis. Results: The analysis revealed four categories and an overall theme: ‘Striving for balance in everyday life’. The participants described persistent lived body restrictions that affected their arms, legs, and face. Bodily symptoms and loss of energy limited or restricted many everyday activities. In connection with healthcare, both satisfaction and feeling vulnerable in a critical situation were described. Experiences of the recovery process varied. The participants described acceptance and reappraisal of a new life situation despite their limitations, and having gained the knowledge that life can change suddenly. However, they also expressed disappointment following an overly positive prognosis in the early stages, and over a continuous wait for recovery. For some participants life had returned to as before. Conclusion: The participants experienced limitations in everyday life and decreased functioning in several parts of the body. The recovery process may still be ongoing two years after onset. Rehabilitation intervention with an extended focus on supporting individualized coping processes could facilitate ways to live with persistent disability.