Experiences of living with myasthenia gravis: a qualitative study with Taiwanese people

J Neurosci Nurs. 2013 Apr;45(2):E3-E10. doi: 10.1097/JNN.0b013e31828291a6.

Abstract

Myasthenia gravis (MG) is an auto-immune, neuromuscular disorder, which presents with symptoms of fluctuating muscle fatigue because of a dysfunction of the neuromuscular junction. This study explores the illness experience of patients with MG, their experiences of illness, its challenges, and their coping and support strategies. In-depth interviews were undertaken with nine participants with MG (six for a generalized type of MG, three for ocular type). Data were subjected to inductive content and thematic analysis. Four themes emerged from MG patients with associated subthemes. They were "perceptions of MG," "challenges of MG, "social support," and "adapting and adjusting to MG." The study reveals the way in which individuals respond to and cope with their diagnosis. The importance of social and peer support is a key factor as well as the development of psychological strategies to live with MG. The recognition that there was a need to recognize the role of Western medicine in controlling their disease was also an important finding.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Asian People / psychology*
  • Breathing Exercises
  • Female
  • Humans
  • Male
  • Meditation / psychology
  • Middle Aged
  • Myasthenia Gravis / nursing*
  • Myasthenia Gravis / psychology*
  • Myasthenia Gravis / therapy
  • Peer Group
  • Qualitative Research
  • Social Support
  • Spouses / psychology
  • Taiwan