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http://dx.doi.org/10.7475/kjan.2014.26.2.191

The Factors affecting Burdens and Quality of Life of the Family Caregivers of Patients with Rare and Incurable Diseases Using Home Ventilators  

Hwang, Moon Sook (Department of Nursing Science, School of Oriental Medicine in WooSuk University)
Lee, Mi Kyoung (Department of Clinical Nursing Science, Samsung Medical Center, School of Medicine, Sungkyunkwan University)
Song, Jeong Rye (Department of Home Care Nursing, Aju University Hospital)
Publication Information
Korean Journal of Adult Nursing / v.26, no.2, 2014 , pp. 191-202 More about this Journal
Abstract
Purpose: This study was aimed to survey the actual caregiving conditions of family caregivers who are caring patients with rare and incurable diseases using home ventilators at home, and to clarify any factors affecting their burdens and quality of life. Methods: A questionnaire survey was performed by the 159 subjects, and the questionnaires contained the actual conditions of caregiving activities, and caregiver's burdens and quality of life. The collected data was analyzed by ANOVA, Pearson's correlation, and stepwise linear regressions. Results: The mean of burden scores was 3.55 out of 5, and influencing variables included the relationships with patient (spouse), respite (moderate), health status, and diagnosis (non ALS), with the explanatory power of 30.0%. The mean of the quality of life was 2.58 point, and the influencing variables included burdens, health status, and respite (enough), with the explanatory power of 39.0%. Conclusion: In order to improve the quality of life among family caregivers caring for patients with using a home ventilator, it is required to develop strategies for reducing caregiving burdens as well as to introduce family respite welfare systems to family caregivers.
Keywords
Rare disease; Ventilator; Caregiver; Burden; Quality of life;
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Times Cited By KSCI : 5  (Citation Analysis)
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