思覺失調症病人家屬照顧者的調適歷程和照顧負荷

Abstract

研究背景與目的: 思覺失調症(Schizophrenia)原譯為精神分裂症，目前致病機轉仍未清楚。社會大眾對思覺失調症常有錯誤認知、疾病污名化，使患者不願正視自身疾病而延誤就醫、照顧者在辛苦照顧的同時也承受他人異樣眼光，使照顧者在缺乏資源與支持下，承受沉重負荷。因此疾病複雜與可能反覆發作之特性，若家中有思覺失調症患者，對於患者本身、長期照顧患者之照顧者的生理、心理、經濟及工作造成負擔或無法負荷之情況。由於照顧者扮演了重要的角色，在歷經了身心衝擊，若能獲得適當資源與支持，將有益於照顧者適應，縮短調適時間進而改善生活品質。因此本研究將探討思覺失調症病人之家屬照顧者的調適歷程與照顧負荷關聯性。 研究方法：本研究採取橫斷式研究，以立意取樣、結構式問卷了解病患照顧者的照顧經驗，於台北某醫學中心精神科門診收案。問卷包含患者、照顧者基本資料表，調適歷程量表包含憂鬱、焦慮及壓力量表、正負向情緒量表、生活滿意度量表、壓力相關成長量表及健康相關生活品質量表，與照顧負荷量表。收集之資料利用PASW Statistics 20 (SPSS)分析之。 研究結果: 研究結果顯示照顧者以女性居多占70.1%，且大多數為大學畢業占39%。其中84.4%與患者同住，身分大部分為父母占66.2%且多數每日照顧時間小於等於4小時。55.8%的照顧者未就業，46.8%無經濟壓力，多達62.3%自評健康為普通狀態。收集疾病知識管道以經由醫療人員占大多數33.8%。患者以女性居多占59.7%，且平均年齡為44.4歲。大多數為大學畢業占36.4%且婚姻狀態以單身為居多占75.3%。多數皆有定期服藥占94.8%，身心障礙等級以未領有身心障礙手冊為多數占36.4%且病程達83.1%為超過6年以上；71.4%患者有住院過。大多數患者無其他親屬罹患此病占87%。照顧者之經濟壓力情況與照顧負荷呈現正向相關。照顧者或患者之基本屬性與調適歷程因素具相關性；調適歷程相關因素亦與照顧負荷有相關性。控制照顧者、患者基本屬性及臨床特性後，負向情感指數及生活滿意度與照顧負荷達統計顯著差異。 結論：照顧者的憂鬱、焦慮、負向情感會加重照顧者的照顧負荷，但若提升生活滿意度及健康相關生活品質則能改善照顧負荷程度。隨著政府越來越重視照顧身心障礙或失能患者之照顧者，我們更應該重視那些需要被協助但不知如何求助的少數聲音。故建議未來能發展適合照顧者之正負向照顧經驗評估量表，藉由量表評估照顧者於照顧工作時所遭遇到的困難及其調適情形，引導照顧者提升自我覺察、找到照顧工作的價值並肯定自己的能力，促進整體生理、心理健康，降低負荷程度，進而協助適應照顧工作。

Background and purpose: Original Chinese translation of schizophrenia was splitting of the mind, and the pathogenic mechanism are still unknown. A lot of people usually have been misunderstood the schizophrenia as a stigma. Therefore, patients elude the medical advice and caregivers have been experienced the discrimination when caring at the same time. Lacking of resources and supports for caregivers impose a heavy burden of caregiving. Because of complexity and relapse of characteristic of disease, when having a family member with schizophrenia, it causes considerable burden affecting physical, mental, financial impacts as well as work both for patients and caregivers. Owing to the caregiver play a vital role in caregiving, acquiring adequate resources and supports would be helpful for adjustment of caregiving process, decreasing adaptive time and improving quality of life after experiencing psychosocial impacts. Thus, the purpose of this study is to investigate the adaptive process and burden of schizophrenia patients’ caregivers. Method: This was a cross-sectional study. Via purposive sampling, this study used structured questionnaire to realize the caring experience of caregivers. The data were collected from outpatient department of psychiatry at a medical center in northern Taiwan. Contents of questionnaire included caregivers’ and patients’ demographic data, characteristic of the disease, depression, anxiety and stress scale, positive and negative affect schedule, life satisfaction scale, stress-related growth scale, health-related quality of life, and caregiver burden. Collected data was analyzed by PASW Statistics 20 (SPSS). Results: The result showed that financial stress of caregiver had positive correlation with caregiver burden. Caregivers’ or patients’ demographic factors were related with factors of adjustment; moreover, factors of adjustment were also related with caregiver burden. Controlling caregivers’ or patients’ demographic factors and characteristic of the disease, index of negative affect schedule and life satisfaction were significantly correlated with caregiver burden. Conclusion: The higher level of index of depression, anxiety and negative affect schedule, the greater burden caregivers have. However, increasing life satisfaction and health-related quality of life could ameliorate caregiver burden. Paying more attention to caregivers of disabled persons, government should lay emphasis on those who need help but not knowing how to ask for. Developing an evaluation scale with positive and negative aspects through caring activity would be benefit for assessing the difficulty and adaptive process for caregivers. Guiding caregiver to discover self-awareness, value of caring activity, and self-affirmation would improve physiological and psychological conditions, attenuate caregiver burden, and then assist with adaption of caring activities.