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| 題 名 | 罕見疾病患者主要照顧者社會支持、希望感與復原力之相關研究=The Related Study on the Social Support, Hope and Resilience of Primary Caregivers of Rare Diseases Patients |
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| 作 者 | 魏琦芳; 郭華; 黃惠滿; 曾佳珍; | 書刊名 | 臺灣健康照顧研究學刊 |
| 卷 期 | 30 2024.07[民113.07] |
| 頁 次 | 頁82-100 |
| 分類號 | 419.5 |
| 關鍵詞 | 罕見疾病; 復原力; 社會支持; 希望感; Rare disease; Resilience; Social support; Hope; |
| 語 文 | 中文(Chinese) |
| 中文摘要 | 罕見疾病指罹患率極低、致病因素複雜且診斷不易的疾病,主要照顧者承受很大的照顧壓力與負荷。過去文獻指出社會支持、希望感與復原力有關係,但鮮少研究同時探討上述三因素之相互關係,社會支持、希望感哪一個因素對復原力較重要,值得研究進一步探討。本研究探討罕見疾病患者主要照顧者的復原力情況、了解社會支持、希望感與復原力之關係,並分析復原力之影響因素。採用橫斷式問卷調查法收集資料,研究工具包括復原力量表、社會支持量表、希望感量表,共收集186份罕見疾病主要照顧者有效問卷,回收率97.9%。以SPSS 23.0版統計軟體進行描述性統計、t-test、ANOVA、相關分析及多元迴歸分析。結果顯示主要照顧者的社會支持、希望感與復原力之間具有顯著正向關係。透過多元迴歸分析得知,社會支持三個面向中僅有「資訊支持」顯著影響復原力;希望感三個面向中「信心」、「與他人關係」和「未來可能性」皆顯著影響復原力,其中以「未來可能性」的解釋力最大。研究結果說明希望感對罕見疾病主要照顧者的重要性,尤其是對未來可能性懷抱希望的主要照顧者其復原力越好,建議社政單位或醫療照護單位除了提供主要照顧者相關社會支持外,也可多加思考如何提升他們的希望感,以協助主要照顧者提升復原力。 |
| 英文摘要 | Rare diseases are characterized by their extremely low prevalence, complex pathogenic mechanisms, and challenging diagnoses. Primary caregivers of patients with rare diseases experience significant distress and caregiving burdens, with social support and hope being crucial factors for their resilience. Despite this, empirical research on this topic is limited, and the impact of social support and hope on resilience remains unclear. This study aims to explore the resilience of primary caregivers for rare diseases patients, , examine the relationship between social support and hope with resilience, and analyze the influencing factors of resilience. Data were collected using a questionnaire survey that included scales for social support, hope, and resilience. A total of 186 valid responses from primary caregivers were obtained, achieving a response rate of 97.9%. Data analysis employed descriptive statistics, t-tests, ANOVA, correlation analysis, and multiple linear regression using SPSS software. The findings revealed a significant positive correlation between social support, hope, and resilience among primary caregivers. Through multiple regression analysis, it was found that among the three dimensions of social support, only "information support" significantly influences resilience. Among the three dimensions of hope, "confidence", "relationships with others", and "future possibilities", all significantly impact resilience, with "future possibilities" having the greatest explanatory power. The overall model shows that "information support", "confidence", "relationships with others" and "future possibilities" are significant positive predictors of resilience. This study highlights the critical role of hope for primary caregivers of rare disease patients and suggests that enhancing their sense of hope, alongside providing social support, can bolster their resilience. |
本系統中英文摘要資訊取自各篇刊載內容。