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KMID : 0806120080380060802
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2008 Volume.38 No. 6 p.802 ~ p.812
The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis
Kang Sung-Ye

Abstract
Purpose: The purpose of this study was to identify and describe phenomenological structures of the lived experience of struggling against an illness for patients with Amyotrophic Lateral Sclerosis (ALS).

Methods: The participants were 7 patients with ALS recruited by snowball sampling who agreed to participate in this research and could verbally communicated with the researcher. Data were collected by long term-repeated interviews with participants in their own homes. Data were analyzed using Colaizzi¡¯s method of phenomenology.

Results: Four categories were extracted as follows: ¡¯Being seized with fear of death¡¯, ¡¯Living a marginal life¡¯, ¡¯Accepting hard fate¡¯, and ¡¯Clinging to faint life¡¯. Seven theme clusters were identified as: ¡¯Wandering to find a healing method with ominous signs in the body¡¯, ¡¯Having a diagnosis of ALS is like a bolt from the blue and struggling against illness with faint hope¡¯, ¡¯Being forced out to the edge of life with anguish¡¯, ¡¯Filling one¡¯s heart with hatred and longing toward becoming estranged from the world¡¯, ¡¯Living with stigma as a stumbling block with bitter grief in one¡¯s heart¡¯, ¡¯Accepting every things as one¡¯s fate with self controlled fear of death¡¯, and ¡¯Attaching to desire to live¡¯.

Conclusion: The results of this study can be used to develop the programs to support patients with ALS and their family.
KEYWORD
Experience, Amyotrophic lateral sclerosis
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