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Kang: The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis
Original Article
Journal of Korean Academy of Nursing

Journal of Korean Academy of Nursing 2008; 38(6): 802-812.

Published online: 31 December 2008

DOI: https://doi.org/10.4040/jkan.2008.38.6.802

The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis

Sung Ye Kang

Assistant Professor, Department of Nursing, Kkottongnae Hyundo University of Social Welfare, Cheongwon, Korea.

Address reprint requests to: Kang, Sung Ye. Department of Nursing, Kkottongnae Hyundo University of Social Welfare, 387 Sangsam-ri, Hyeondo-myeon, Cheongwon-gun, Chungcheongbuk-do 363-823, Korea. Tel: 82-43-270-0170, Fax: 82-43-270-0120, srkang@kkot.ac.kr

Received 4 September 2008       Accepted 6 November 2008

Copyright © 2008 Korean Society of Nursing Science

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.

Keywords: Experience, Amyotrophic lateral sclerosis

Figures and Tables

Figure 1
Constructional elements of lived experience of struggling against ALS.
jkan-38-802-g001
Table 1
Formulated Meanings, Themes, Theme Clusters, and Categories of Lived Experience of Struggling Against ALS
jkan-38-802-i001

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