運動神經元疾病病人家庭照顧者生活品質相關因素之探討

研究背景：國內有關漸凍人研究多數以醫學臨床研究為主，對於針對漸凍人主要照顧者的負荷與生活品質相關研究卻相對缺乏。研究目的：本研究目的為探討運動神經元疾病病人家庭照顧者生活品質相關因素，以罹患運動神經元疾病病人居家照顧的主要照顧者為研究對象。研究方法：本研究為本研究採橫斷式研究設計，採方便取樣研究，採用肌萎縮側索硬化功能評定量表(ALS Functional Rating Scale)、照顧者照顧負荷量表(Zarit Scale)、生活品質量表進行資料收集。並以SPSS21.0版進行資料分析。研究採描述性統計、推論統計t檢定或ANOVA、Pearson 積差相關，以及多元迴歸等統計方法進行分析。研究結果：本研究共收案67人，研究結果顯示主要照顧者負荷以犧牲感負荷、依賴感負荷、不確定感負荷及負面情緒負荷最為顯著，而情感負荷則未影響到照顧者負荷。照顧者生活品質方面：不論是生理層面、心理層面、社會層面、環境層面及整體層面都有顯著相關。而照顧者負荷與生活品質整體呈現負相關，其中又以犧牲感負荷及負面情緒負荷最為顯著。照顧者負荷受其自覺健康狀況、自覺心理健康狀況、自覺與病人目前關係品質因素等影響，而病人的基本特性及身體功能並不影響照顧者的負荷與生活品質。另外，生活品質預測因子以負荷、及自覺身體健康為主，其解釋力調整後達50.6% (R2 =.506)。研究結論：本研究結果在臨床上可做為臨床醫療團隊人員在照顧運動神經元疾病病人的參考，從瞭解主要照顧者的負荷中協助尋求相關專業的照護，並建議以主要照顧者為中心提供專業訓練、長照資源服務與社會支持系統。

Background: Most studies focused on the medical clinical research on patients with motor neuron disease in Taiwan. However, there relatively lacks research on the burden and quality of life of the main caregivers of patients with motor neuron disease.Objectives: The purpose of this study was to explore the factors related to the burden and quality of life of home caregivers of patients with motor neuron disease. Methods: The functional assessment scale (ALS Functional Rating Scale), caregiver''s care load scale (Zarit Scale), and quality of life scale were used as research tools. Data analysis was performed with SPSS 21.0 to conduct descriptive statistics, inferential statistics t-test or ANOVA, Pearson product difference correlation, and multiple regression analysis.Results: A total of 67 cases were collected in this study. The results showed that the main caregivers experienced significant sacrifice load, dependence load, uncertainty load, and negative emotional load, but emotional load did not affect the caregiver load. In terms of caregivers'' quality of life, there are significant correlations at the physical, psychological, social, environmental and overall levels. Caregivers’ load is negatively correlated with overall quality of life. The sacrifice load and negative emotional load are the most significant loads. The caregivers'' load is affected by their perceived health status, perceived mental health status, and patient factors that require long-term care. The patients'' basic characteristics and physical functions do not affect the caregivers'' load and quality of life. The predictors for the quality of life are highly explanatory with percived physical health, sacrifice load, and negative emotional load.Conclusion: The results of this study can be used clinically as a reference for medical team members in caring for patients with motor neuron disease, providing professional care with an understanding of the load of the main caregivers, and developing professional training, long-term care resouces, and social support system for the main caregivers.