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Experiences of Living With Myasthenia Gravis: A Qualitative Study With Taiwanese People

Chen, Yu Tai; Shih, Fu Jin; Hayter, Mark; Hou, Chang Chiu; Yeh, Jiann Horng

Journal of Neuroscience Nursing: April 2013 - Volume 45 - Issue 2 - p E3–E10
doi: 10.1097/JNN.0b013e31828291a6
Article: Online Only

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.

This article provides descriptions of the lived experiences and journeys toward disease management and healing of individuals with myasthenia gravis.

Yu Tai Chen, PhD, is a Head Nurse at the School of Nursing, Shin Kong Wu Ho-Su Memorial Hospital, National Yang Ming-University, Taipei, Taiwan.

Fu Jin Shih, DNSc, is a Professor at the School of Nursing, National Yang Ming-University, Taipei, Taiwan.

Questions or comments about this article may be directed to Mark Hayter, PhD, at M.hayter@hull.ac.uk. He is a Professor at the Faculty of Health and Social Care, University of Hull, Cottingham, United Kingdom.

Chang Chiu Hou, MD of Neurology, is a Professor at the College of Medicine, Shin Kong Wu Ho Memorial Hospital, Fu-Jen Catholic University, Taipei, Taiwan.

Jiann Horng Yeh, MD of Neurology, is a Vice Professor at the College of Medicine, Shin Kong Wu Ho Memorial Hospital, Fu-Jen Catholic University, Taipei, Taiwan.

The authors declare no conflicts of interest.

© 2013 American Association of Neuroscience Nurses