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A Journey of Suffering: Living With Amyotrophic Lateral Sclerosis in South Korea

Oh, Hyunjin; Schepp, Karen G.; McGrath, Barbara B.

Journal of Neuroscience Nursing: June 2014 - Volume 46 - Issue 3 - p E3–E11
doi: 10.1097/JNN.0000000000000054

ABSTRACT: Amyotrophic lateral sclerosis presents significant challenges for patients because of the devastating disease characteristics and the fact that there is no treatment available. In this article, we explored the illness experiences from the perspectives of patients with amyotrophic lateral sclerosis in the sociocultural context of South Korea. Fifteen patients were observed and interviewed between September 2009 and July 2010 in the metropolitan area of South Korea. We used an ethnographic approach for data collection and analysis. The meta-theme generated was “a journey of suffering,” and three themes emerged: (a) off the course, (b) drifting, and (c) on a new boat. Participants experienced multidimensional suffering as the disease progressed. Healthcare professionals should understand that, for many patients, this disease is a process or a series of experiences rather than a single diagnosis. This knowledge would allow healthcare providers to help patients prepare for those needs that arise as the disease worsens.

Questions or comments about this article may be directed to Hyunjin Oh, PhD RN, at She is an Assistant Professor, School of Nursing, Gachon University, Incheon, Korea.

Karen G. Schepp, PhD, is a Professor at the University of Washington in Seattle, WA.

Barbara B. McGrath, PhD, is a Research Associate Professor at the University of Washington in Seattle, WA.

The authors declare no conflicts of interest with respect to the authorship and/or publication of this article.

© 2014 American Association of Neuroscience Nurses