在學唐氏症病患家庭照顧者負荷及其相關因素探討

Abstract

本研究的目的主要是在探討在學唐氏症病患的家庭照顧者負荷的狀況，以及患者和其照顧者基本屬性、社會支持及生活品質之間的相關性。本研究是採取橫斷式研究，以立意取樣方式，收集教育部國立特殊教育學校之在學唐氏症學生基本資料，並針對唐氏症病患及其家庭照顧者為主要研究對象進行訪談，共計收案113人。使用結構式問卷收集資料，研究工具包括研究對象基本資料、照顧者負荷量表、社會支持量表、生活品質量表(SF-36)等四個部分，研究結果發現： 一、在收案樣本中在學唐氏症病患的家庭照顧者以女性居多數，年齡在41-50歲間，高中學歷以上，多為患者的母親，58.41%的家庭照顧者有工作，其餘則為全職的家庭主婦。照顧者負荷並不會因個人基本屬性而有所差異。而在學的唐氏症病患中，以男生居多，年齡在16-20歲間，教育程度以就讀高中（職）居多，皆申請領有身心障礙手冊，且多數亦領有重大傷病卡。照顧者負荷只與病患的教育程度有關，與其他基本屬性無關。 二、照顧者社會支持協助情形越多、足夠程度越高，其照顧者負荷程度就越低。而照顧者社會支持需要程度越低，則照顧負荷的程度也越低。 三、照顧者生活品質得分越高其照顧者負荷程度就越低。 四、在學唐氏症患者家庭照顧者照顧負荷之有效預測因子為「照顧者社會支持的需要程度」及「照顧者生活品質」二個變項，共可解釋24.1%的總變異量，而照顧者生活品質為最強的預測因子。 藉由本研究的結果可以提供護理人員用較多面向的思考模式來評估個案的問題，如於探討慢性病患照顧者負荷時，同時能考慮社會支持、生活品質與照顧負荷等因素的相關性，以其提供照顧者更適切的協助與服務，使患者及照顧者在病程當中，生活得更有尊嚴及品質。

The purpose of this research was to investigate the caregiver’s burden of the Down syndrome students and related factors including relationship between personal factor, caregiver’s burden, society support and caregiver’s life quality. The research was conducted with cross-sectional study; utilizing purposive-sampling to collect the background information of the 113 Down syndrome students from the special education school, follow by face-to-face interview with their caregivers. The survey was carried out by structured-questionnaires in four major sections such as background information, burden scale of the caregiver, scale of the society support, and living quality scale (SF-36). The results were coded and processed with SPSS 12.0 for data and statistical analysis using statistic analysis techniques of number distribution, percentage, t-test, one-way ANOVA, Pearson's product-moment correlation and Stepwise regression analysis. The conclusions were as followed: 1)The caregivers for the Down syndrome patients were mostly females, between the age of 41-50, with education background above high school level, and most of them were the mothers of the patient. The caregiver’s burden seemed not to be affected by their personal characteristics. On the other hand, most of the Down syndrome patients were males, between the age of 16-20, and educational background of high school. All of them have official registration of handicap. The caregiver’s burden was only related to the patient’s background education, but no other relevance. 2)With more support from the society, the lower burden would be for the caregivers. In addition, the less need of support from the society support, the less burden of the caregivers as well. 3)The higher scores for the living quality, the lower of the burden for the caregivers . 4)The factors that influenced the caregivers of the Down syndrome students were “care-giver’s need for society support” and “care-giver’s living quality”. These two factors can explain 24.1% of the total variance. Furthermore, the caregiver’s living quality was the strongest predicting factor. The results of this research allowed the healthcare personnel to consider their case study with a more multi-directional consideration such as maintain a balance of relationship between the burden of caregivers for the chronic disease patient to their living quality and the society support. With those in mind can bring to the patient a better medical service and assistance so that during this period of recovery, they can living with quality and dignity.