The Lived Experience of Struggling against Illness for Patients with Amyotrophic Lateral Sclerosis.
10.4040/jkan.2008.38.6.802
- Author:
Sung Ye KANG
1
Author Information
1. Department of Nursing, Kkottongnae Hyundo University of Social Welfare, Cheongwon, Korea. srkang@kkot.ac.kr
- Publication Type:Original Article ; English Abstract
- Keywords:
Experience;
Amyotrophic lateral sclerosis
- MeSH:
Adaptation, Psychological;
Adult;
Amyotrophic Lateral Sclerosis/*psychology;
Female;
Grief;
Humans;
Interviews as Topic;
Male;
Middle Aged;
Quality of Life;
Stress, Psychological
- From:Journal of Korean Academy of Nursing
2008;38(6):802-812
- CountryRepublic of Korea
- Language:Korean
-
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.
