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황문숙 ( Hwang Moon-Sook ) - 우석대학교 간호학과
이미경 ( Lee Mi-Kyoung ) - 삼성서울병원 임상간호학연구소
송종례 ( Song Chong-Rye ) - 아주대학교병원 가정간호사업소
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Abstract
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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.
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KeyWords
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Rare disease, Ventilator, Caregiver, Burden, Quality of life
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원문 및 링크아웃 정보
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등재저널 정보
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