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研究生:邱麗錦
研究生(外文):CHIU, LEE-CHIN
論文名稱:普瑞德-威利氏症候群病童父母親的壓力與因應策略相關性之探討
論文名稱(外文):Stress and coping strategies for parents of children with Prader-Willi syndrome
指導教授:毛新春毛新春引用關係
學位類別:碩士
校院名稱:輔仁大學
系所名稱:護理學系碩士班
學門:醫藥衛生學門
學類:護理學類
論文種類:學術論文
論文出版年:2007
畢業學年度:95
語文別:中文
中文關鍵詞:普瑞德-威利氏症候群父母壓力因應策略
外文關鍵詞:Prader-Willi Syndromeparentsstresscoping strategies
相關次數:
  • 被引用被引用:10
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  • 下載下載:111
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本研究為描述相關性研究,採橫斷式調查法,目的主要在探討普瑞德-威利氏症候群(Prader-Willi Syndrome;PWS)病童父母親於養育病童過程中的壓力與因應策略,進而探討個人屬性對壓力與因應策略之影響,並比較父親與母親的壓力程度及所採取的因應策略之差異。
本研究選取中華民國PWS病友關懷協會中PWS病童的父母親為研究對象,應用結構式問卷包括父母親壓力量表與因應策略量表-為研究工具,進行資料之收集,共收得116位病童父母親的資料。將收集所得資料以SPSS for Windows12.0套裝軟體進行描述性統計、魏氏帶符號等級檢定(Wilcoxon signed ranks test)、t檢定、單因子變異數分析(One-Way ANOVA)、皮爾森積差相關(Pearson's Correlation)及逐步迴歸(Stepwise Multiple Regression)之統計分析。研究結果分述如下:
一、父親(n=49)平均年齡為42.20歲;母親(n=67)平均年齡為40.76歲;而病童(n=69)平均年齡為9.78歲。
二、父親和母親在養育病童過程中的壓力與壓力類別之得分均無顯著差異;父親與母親在養育病童過程中感受的壓力類別之程度相同,其依序均為「孩子疾病的特殊問題」、「孩子的教養與就學概況」、「孩子疾病的醫療照護」、「社會環境與資源的支持概況」及「自我受限及與親友間的互動關係」;父親與母親於單項壓力程度方面,壓力感受最高的前四項相同,其依序均為「擔心孩子的未來」、「擔心孩子會智能不足與學習障礙」、「擔心孩子因嗜吃,而導致肥胖」及「擔心孩子動作發展遲緩」,而父親與母親之第五項壓力感受分別為「擔心孩子語言發展遲緩」與「常因關注這孩子,以致疏於照顧其他子女」。
三、在個人屬性對壓力的影響方面:父親的職業、工作性質、教育程度、病童年齡、病童性別、家庭經濟、僱用褓姆概況對其壓力感受有影響;而母親的教育程度、病童年齡、病童性別、病童疾病特徵、子女數、家庭經濟對其壓力感受有影響。
四、父親和母親在面對養育病童過程中的壓力時,所採取的因應策略與因應策略類別之得分均無顯著差異;父親與母親使用因應策略的頻率相同,依序均為「問題取向的因應策略」、「情緒取向的因應策略」。
五、個人屬性對因應策略的影響:父親方面的病童年齡、病童疾病特徵對其採取的因應策略有影響;而母親的教育程度、支持系統、病童年齡、病童疾病特徵、家庭經濟、家庭型態對其採取的因應策略有影響。
六、父母親在養育病童過程中的壓力與其採取的因應策略呈正相關,即壓力感受越大,使用因應策略的頻率越高。
七、在父親與母親的壓力之預測變項方面:父親以「情緒取向的因應策略」、「僱用褓姆概況」、「工作性質」及「問題取向的因應策略」為整體壓力之預測變項,其可解釋整體壓力的總變異量為48.8%;而母親則以「情緒取向的因應策略」及「家庭經濟」為整體壓力之預測變項,其可解釋整體壓力的總變異量為36.4%。
本研究結果可提供臨床醫護人員及護理教育者對PWS病童父母親的壓力與因應策略情形之瞭解,也可作為中華民國PWS病友關懷協會等社會支持團體之參考。此外,本研究呈現出其他病童父母親可能產生的壓力感受,能提供其感同身受的心理支持或抒發管道,亦可增加病童父母親對因應策略之瞭解與運用。
This study is a descriptive relationship study using the cross-sectional study method. The purpose of this study is to explore the stress that the parents of children with Prader-Willi Syndrome (PWS) experience and how they deal with this stress. The study will also explore how personal attributes affect each person’s coping strategies, compare the degree of stress the fathers and mothers feel and the difference in their coping strategies.
The study subjects in this study are the parents of children with PWS and who are members of the Prader-Willi Syndrome Association. Structured questionnaires, including Father/Mother stress surveys and coping strategy surveys, were used as the main tool for information collection.116 parents were asked to fill in the questionnaires, and the information thus obtained was analyzed using SPSS for Windows 12.0 and underwent statistical analysis using descriptive statistical analysis methods, Wilcoxon signed ranks test, t-test, One-Way ANOVA, Pearson's Correlation and Stepwise Multiple Regression. The results are as below:
1. The average age of the fathers (n-49) is 42.20 years; the average age of the mothers (n=67) is 40.76 years; the average age for children with PWS is 9.78 years.
2. The fathers and mothers of children with PWS felt about the same amount of stress and were stressed by the same kinds of things. Both fathers and mothers felt that in the process of raising children with PWS, the “special problems caused by PWS” made them feel the most stress, followed by “the education of the children and how they are doing in school” “the medical care of the children” “social environment and support from society” and “Self-handicapping by the children and interacting with relatives and friends”.The four items that caused the most stress were the same for the fathers and mothers. They are, in descending order: “the children’s future”, “worries that the children will meet learning barriers because they’re not smart enough”, “the children will get obese from overeating” and “worries that their children will be slow in developing motor skills. The fifth item of worry for fathers is “the development of the children’s lingual skills” while the fifth item of worry for mothers is “neglect of other children as a result of paying too much attention of their afflicted children”.
3. The effect of personal attributes on stress: For fathers, his occupation, educational background, nature of occupation, age and gender of their afflicted children, family economical status and whether the family has a babysitter or not affects the stress they feel. For mothers, the educational background, age and gender of their afflicted children, the nature of PWS, the number of children in the family and family economic status all affects the stress they feel.
4. There is not much difference in the coping strategies that fathers and mothers use in dealing with the stress of raising children with PWS. The frequency in which fathers and mothers used coping strategies was about equal, and the most commonly used was “strategies that deal with problems” followed by “strategies that deal with emotional stress”.
5. The effects of personal attributes on coping strategies: For the fathers, the age of their afflicted children and the characteristics of the disease affect their coping strategies. For the mothers, their own educations background, support systems, the age of their afflicted children, family economic status and type of family affects their coping strategies.
6. The stress that fathers and mothers face when raising children with PWS are in direct relation to the coping strategies that they use, i.e. the more stress the parents feel, the more often they use coping strategies.
7. Stress predictors for fathers and mothers: For the fathers, strategies that deal with emotional stress, whether or not the family has a babysitter, the types of jobs they work at and the strategies that deal with problems are the stress predictors, and the total explained stress variation is 48.8%. For the mothers, strategies that deal with emotional stress and family economic status are the stress predictors, and the total explained stress variation is 36.4%
The results of this study can help medical personnel and nursing educators understand the stress and coping strategies of parents raising children with PWS, as well as serve as a reference for the Prader-Willi Syndrome Association and other social support groups. This study gives insight into the stress that parents of children with PWS can feel, and can give these parents psychological support or let them express their feelings. The study can also let parents understand more about coping strategies and how to use them.
中文摘要 ⅰ
英文摘要 ⅳ
目錄 ⅸ
圖表目錄
第壹章 緒論
第一節 研究動機 1
第二節 研究重要性 3
第三節 研究目的 5
第四節 研究問題 6
第五節 名詞界定 7
第貳章 文獻查證
第一節 普瑞德-威利氏症候群之概述 9
第二節 先天性異常病童父母親之壓力 12
第三節 先天性異常病童父母親之因應策略 19
第四節 普瑞德-威利氏症候群病童父母親的壓力與因應策略 23
第參章 研究方法
第一節 研究架構 28
第二節 研究假設 30
第三節 研究設計 32
第四節 研究對象 32
第五節 研究工具 32
第六節 研究工具效度與信度的檢定 34
第七節 研究步驟 37
第八節 資料收集過程 40
第九節 資料分析 41
第十節 倫理考量 45
第肆章 研究結果
第一節 研究對象之基本資料 46
第二節 病童父母親的壓力源與壓力程度 54
第三節 病童父母親的因應策略 71
第四節 研究對象個人屬性對壓力之影響 79
第五節 研究對象個人屬性對因應策略之影響 108
第六節 病童父母親的壓力與因應策略之相關性 123
第七節 病童父母親的壓力之預測變項 126
第伍章 討論
第一節 病童父母親的壓力源與壓力程度 132
第二節 影響病童父母親壓力的相關因素 136
第三節 病童父母親的因應策略 142
第四節 影響病童父母親因應策略的相關因素 143
第五節 病童父母親的壓力與因應策略之相關性 148
第六節 病童父母親的壓力之預測變項 150
第陸章 結論與建議
第一節 結論 153
第二節 臨床實務、教育與社會之應用 165
第三節 研究限制與建議 166


參考資料
中文部份 168
英文部份 175
附錄
附錄一 問卷內容專家效度名單 189
附錄二 職業等級分類 190
附錄三 普瑞德-威利氏症候群病童父母親的壓力與
因應策略問卷 191

圖表目錄
圖目錄
圖3-1 研究架構 29
圖3-2 研究步驟 39
表目錄
表3-1 父母親壓力量表各次量表項目 34
表3-2 父母親因應策略量表各次量表項目 34
表3-3 專家內容效度評定結果 35
表3-4 父母親壓力量表之信度 37
表3-5 父母親因應策略量表之信度 37
表3-6 資料分析的方法 44
表4-1 病童父母親個人屬性資料 48
表4-2 病童個人屬性資料 50
表4-3 家庭狀況 53
表4-4 病童父親壓力程度之次數分配及百分比 58
表4-5 病童母親壓力程度之次數分配及百分比 62
表4-6 病童父母親壓力類別之分析 66
表4-7 病童父母親壓力類別得分之分佈狀況 69
表4-8 病童父母親壓力類別之平均壓力程度 70
表4-9 病童(不同年齡層)父母親壓力類別之平均壓力程度 70
表4-10 病童父親因應策略之次數分配及百分比 73
表4-11 病童母親因應策略之次數分配及百分比 75
表4-12 病童父母親因應策略之類別分析 77
表4-13 病童父母親因應策略類別得分之分佈狀況 78
表4-14 病童父母親因應策略類別之使用頻率 78
表4-15 父母親個人屬性與壓力之變異數分析 83
表4-16 病童個人屬性與壓力之變異數分析 92
表4-17 家庭狀況與壓力之變異數分析 102
表4-18 父母親個人屬性與因應策略之變異數分析 110
表4-19 病童個人屬性與因應策略之變異數分析 115
表4-20 家庭狀況與因應策略之變異數分析 120
表4-21 壓力與因應策略相關性之分析 125
表4-22 病童父親的壓力之預測變項 130
表4-23 病童母親的壓力之預測變項 131
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