Korean J Rehabil Nurs.  2011 Dec;14(2):103-110.

Psychosocial Responses and Quality of Life among Amyotrophic Lateral Sclerosis Patients and Their Caregivers

Affiliations
  • 1Department of Nursing, Daejeon University, Korea. hyunjino@gmail.com

Abstract

PURPOSE
The purpose of this study was to explore the psychosocial responses and quality of life (QOL) among Amyotrophic Lateral Sclerosis (ALS) patients and their caregivers in South Korea.
METHODS
A cross-sectional design was used. Purposive sample of 15 ALS patients and their 14 caregivers were recruited via Korean Amyotrophic Lateral Sclerosis Association (KALSA) website. Demographic characteristics, hopelessness, quality of life, physical function, and caregiver burden were measured.
RESULTS
The mean period after being diagnosed with ALS was 57.73 months. The mean score of amyotrophic lateral sclerosis functional rating scale and quality of life was 21.33 (SD=11.97) and 5.70 (SD=1.23) respectively. The mean score of hopelessness was 11.87 (SD=4.72). The caregivers' mean score of McGill quality of life was 4.29 (SD=1.46), and the mean score of McGill quality of life-single item scale was 4.29 (SD=2.02).
CONCLUSION
Since the cause of ALS has not been identified and cure is yet to be discovered, supportive care should be provided for not only quality of life but hope of patients. The findings may be used to develop knowledge based nursing intervention for patients diagnosed with ALS and their caregivers.

Keyword

Amyotrophic lateral sclerosis; Quality of life; Caregivers

MeSH Terms

Amyotrophic Lateral Sclerosis
Caregivers
Humans
Quality of Life
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