Literature DB >> 23422699

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

Yu Tai Chen1, Fu Jin Shih, Mark Hayter, Chang Chiu Hou, Jiann Horng Yeh.   

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.

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Year:  2013        PMID: 23422699     DOI: 10.1097/JNN.0b013e31828291a6

Source DB:  PubMed          Journal:  J Neurosci Nurs        ISSN: 0888-0395            Impact factor:   1.230


  5 in total

Review 1.  Pain, Headache, and Other Non-motor Symptoms in Myasthenia Gravis.

Authors:  Olivia Tong; Leslie Delfiner; Steven Herskovitz
Journal:  Curr Pain Headache Rep       Date:  2018-05-03

2.  Mixed methods analysis of Health-Related Quality of Life in ambulant individuals affected with RYR1-related myopathies pre-post-N-acetylcysteine therapy.

Authors:  Carlos Capella-Peris; Mary M Cosgrove; Irene C Chrismer; Magalie Emile-Backer; M Sonia Razaqyar; Jeffrey S Elliott; Anna Kuo; Paul G Wakim; Katherine G Meilleur
Journal:  Qual Life Res       Date:  2020-02-10       Impact factor: 4.147

3.  Factors associated with quality of life of people with Myasthenia Gravis.

Authors:  Ansuk Jeong; Ju-Hong Min; Yu Kyoung Kang; Juhyeon Kim; Misong Choi; Jin Myoung Seok; Byung Joon Kim
Journal:  PLoS One       Date:  2018-11-08       Impact factor: 3.240

4.  The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis.

Authors:  Nancy Law; Kelly Davio; Melissa Blunck; Dawn Lobban; Kenza Seddik
Journal:  Neurol Ther       Date:  2021-10-23

5.  Development of the Myasthenia Gravis (MG) Symptoms PRO: a case study of a patient-centred outcome measure in rare disease.

Authors:  Sophie Cleanthous; Ann-Christin Mork; Antoine Regnault; Stefan Cano; Henry J Kaminski; Thomas Morel
Journal:  Orphanet J Rare Dis       Date:  2021-10-30       Impact factor: 4.123

  5 in total

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