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http://dx.doi.org/10.4040/jkan.2008.38.6.802

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

Kang, Sung-Ye (Department of Nursing, Kkottongnae Hyundo University of Social Welfare)
Publication Information
Journal of Korean Academy of Nursing / v.38, no.6, 2008 , pp. 802-812 More about this Journal
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;
Citations & Related Records
Times Cited By KSCI : 1  (Citation Analysis)
Times Cited By Web Of Science : 0  (Related Records In Web of Science)
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1 Choi, K. J., & Back, H. C. (2006). Burden and quality of life in caregivers of patients with rare and incurable disease. Journal of Korean Academy of Community Health Nursing, 17, 364-375
2 Colaizzi, P. F. (1978). Psychological research as the phenomenological views. In R. Valle, & M. King (Eds.), Existential phenomenological alternative for psychology (pp. 48-71). New York, NY: Oxford University Press
3 Ince, P. G., Lowe, J., & Shaw, P. J. (1998). Amyotrophic lateral sclerosis: Current issues in classification, pathogenesis, and molecular pathology. Neuropathology and Applied Neurobiology, 24, 104-117   DOI   ScienceOn
4 Ingrid, B., & Goran, H. (2003). Conflict of interest: Experiences of close relatives of patients suffering from amyotrophic lateral sclerosis. Nursing Ethics, 10, 186-198   DOI
5 Lee, K. H. (2001). Correlation among the stroke patient family's health status, burden and quality of life. Journal of Korean Academy of Nursing, 31, 669-680   DOI
6 Oh, S. E. (2001). The lived experience of mothers of children with muscular dystrophy. The Korean Journal of Child Health Nursing, 7, 421-433
7 Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27-37   DOI   PUBMED
8 David, M., Janice, L., & Linda, G. (2001). Do not give up: Employment experience of individual with amyotrophic lateral sclerosis who use augmentive and alternative communication. Augmentive and Alternative Communication, 17, 179-195
9 Evance, J., & Shaw, P. J. (2001). Motor neuron disease: Clinical features and pathogenesis. The Pharmaceutical Journal, 267, 681-683
10 Kim, M. J. (2007). A study of the caregiving burden on grandmothers who raise their grandchildren: A phenomenological research. Journal of Korean Academy of Nursing, 37, 914-923   과학기술학회마을   DOI
11 Martine, J. H., Elmar, G., Sebastian, T., Thomas, H., Martin, W., Max-Josef, H., et al. (2003). Burden of care in amyotrophic lateral sclerosis. Palliative Medicine, 17, 327-333   DOI
12 Johnston, W. (2005). Amyotrophic lateral sclerosis. Parkhurst Exchange, 14, 128-132
13 Young, J. M., & McNicoll, P. (1998). Against all odds: Positive life experience of people with advanced amyotrophic lateral sclerosis. Health &Social Work, 23, 35-43   DOI   PUBMED   ScienceOn
14 Kwon, K. R. (2003). Clinical studies of amyotrophic lateral sclerosis (ALS) through Korean medicine. The Journal of Korean Acupuncture & Moxibustion Society, 20, 209-216
15 Maxwell, J. A. (1996). Qualitative Research design. Thousand Oaks: Sage
16 Ministry of Welfare and Family Affairs. (2005). A guide to supporting medical expenses for the rare and incurable disease patients. Seoul: Author
17 Park, S. Y. (2005, November 9). Writing by eyes. The JoongAng Daily, p. E4
18 Antonietta, V., & Angela, G. (2007). The experience of hope in ALS patients. L'AXONE, 28, 27-34
19 Beresford, S. (1995). Motor neuron disease (amyotrophic lateral sclerosis). London: Chapman & Hall
20 Lee, K. Y., & Sohng, K. Y. (1996). A study on the degree of burden and depression in family caregivers of patients with stroke. Journal of Korean Academy of Nursing, 26, 853-867