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研究生:楊宇寧
研究生(外文):Yang Yu Ning
論文名稱:影響癲癇病童母親家庭功能與生活品質相關因素之探討
論文名稱(外文):Exploring the factors of family function and quality of life with mothers of epileptic children
指導教授:葉昭幸葉昭幸引用關係
指導教授(外文):C. H. Yeh
學位類別:碩士
校院名稱:長庚大學
系所名稱:護理學研究所
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:2008
畢業學年度:96
論文頁數:140
中文關鍵詞:癲癇病童母親親職壓力因應行為癲癇烙印照顧負擔家庭功能生活品質疾病嚴重度
外文關鍵詞:Epileptsy childrenmotherparenting stresscoping strategystigmacaregiver burdenfamily functionquality of lifeseverity
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本研究主要是以橫斷式研究法,目的在找出影響癲癇病童之母親在家庭功能與生活品質相關因素之探討,於北台灣某醫學中心兒童醫院之神經內科門診進行研究資料收集。本研究對象為80位育有年齡介於6個月至20歲癲癇病童之母親(N=80),根據研究目的使用的工具包括疾病嚴重度(Hague Seizure Severity scale)、親職壓力量表(PSI/SF)、父母因應策略量表(PCSI)、癲癇烙印量表、照顧者反應評估 (CRA)表家庭功能評估表(Family APGAR)以及台灣版簡易生活品質量表(SF-36)進行資料收集,將所收集的資料以套裝軟體採皮爾森積差和逐步回歸統計進行統計分析。
本研究主要結果如下:
母親年齡越長、病童診斷年齡越晚、照顧者負擔中的日常事物安排 (disrupted schedule)、經濟 (financial problem)、健康 (health problem)以及缺乏家庭支持(lack of family support )的衝突越小,則會有較佳的家庭功能;但是當親職壓力中的親職困擾(parental distress)增加、親子互動失調(parental-child dysfunction interaction)和難養小孩(DC)問題行為過多,以情緒為導向 (emotional-solving focused)和以支持為導向(supportive-sovling focused)的因應行為次數頻繁以及癲癇烙印(stigma)感受顯著則就會出現家庭功能不良。
疾病嚴重度(severity)、照顧者在擔負日常安排事物、經濟以及健康的衝突,分別與生活品質的心理層面的所有變項為正相關,且母親的年齡與生活品質中的因情緒角色受限(role limitation due to physicals problem)與心理健康(mental health)為正相關;而疾病嚴重度和生活品質中的心理層面之社會功能(social function)為正相關。親職壓力(Parental distress, parental-child dysfunction and difficult child),以問題和情緒為導向的因應行為、癲癇烙印等變項皆未能與生活品質中的生理角色功能(physical functioning)達到統計上顯著差異外,上述自變項可與生活品質其他變項達到統計上顯著差異且為負相關;生活品質中的一般健康活力(vitality)和心理健康可與照顧負擔中的照顧者自尊(self-esteem)達到統計上顯著差異且為負相關。
經濟衝突、親職困擾、以問題為導向的因應行為、疾病嚴重度以及健康衝擊等五個變項是預測癲癇病童母親生活品質中的生理層面之重要變項,可解釋的總變異量達51.1%。而健康衝擊和缺乏家庭支持兩個變項,是預測癲癇病童母親生活品質中的心理層面之重要變項,可解釋的總變異量為49.6%。
關鍵字:癲癇病童、母親、親職壓力、因應行為、癲癇烙印、照顧負擔、家庭功能、生活品質
Abstract
The purpose of this cross sectional study is to explore the factors related to family function and quality of life for mothers with epileptic children. The factors including mother’s and children’s demographic data, parenting stress, stigma, caregiver burden, and coping strategies. The subjects of this study including 80mothers of children with epilepsy who were aged from six mouth to 20 years old and treated at neurology outpatient clinical in a medical center located in northern part of Taiwan. Instrument used in this study including Hague Seizure Severity scale, Parenting Stress Index/Short Form(PSI/SF), Parental Coping Strategy Inventory(PCSI), Parent with children with epilepsy stigma, Caregiver Reaction Assessment(CRA), Family APGAR and Short-Form 36(SF-36).Descriptive analysis, Pearson’s correlation and stepwise regression analysis were used to analyzed data.
According to the study purpose, the major findings of this study were as follows:
Older mother, onset at older children, less disrupted schedule, less financial problem, less health problem and no lack of family support were associated with better family function. Parental distress, parental-child difficult interaction, difficult child, emotional-solving focused and supportive-solving focused coping strategies, and stigma were associated with worse family function.
Severity of illness, disrupted schedule, financial problem, and health problem were associated of positive correlation with mental dimension of quality of life. Mother’s age in role limitation due to physicals problem and mental health, severity of ilness in were associated of positive correlation with all of the subscales of quality of life. Parental distress, parental-child difficult interaction, difficult child, problem-solving focused and emotional-solving focused coping strategies and stigma were significant associated with negative correlation except with physical function of physical dimension with quality of life. Vitality, mental health, and self-esteem were associated of negative correlation with the subscles of mental health..
Financial promble, parental distress, problem-sovling focused coping strategy, severity and health problem for 49.6% can explain the variance for physical dimention of quality of life.
Health problem and lack of family support can explain 49.6% of the variance of quality of life for the subscle mental dimention.
Key Word: Epileptsy children, mother, parenting stress, coping strategy, stigma, caregiver burden, family function, quality of life.
目錄
指導教授推薦書…………………………………………………………..
口試委員審定書…………………………………………………………..
授權書…………………………………………………………………...iii
致謝……………………………………………………………………...iv
中文摘要…………………………………………………………………v
英文摘要………………………………………………………………..vii
目錄………………………………………………………………………x
第一章 緒論……………………………………………………………1
第一節 研究動機與重要性………………………………….1
第二節 研究目的…………………………………………….3
第三節 研究問題…………………………………………….4
第四節 名詞界定…………………………………………….5
第二章 文獻查證………………………………………………………9
第一節 兒童癲癇症……………………………………………...10
第二節 親職壓力………………………………………………...15
第三節 照顧負擔………………………………………………...22
第四節 癲癇烙印………………………………………………...24
第五節 因應行為………………………………………………...28
第六節 家庭功能………………………………………………...33
第七節 生活品質………………………………………………...35
第三章 方法學………………………………………………………..40
第一節 研究設計與架構…………………………………...41
第二節 研究地點、時間與對象……………………………42
第三節 研究工具與信效度...………………………………43
第四節 研究步驟…………………………………..............56
第五節 資料處理與統計分析……………………………..57
第四章 研究結果與分析……………………………………………..58
第一節 癲癇病童及母親基本屬性分析…………………...59
第二節 癲癇病童母親疾病嚴重度、親職壓力、因應行為、癲癇烙印、照顧負擔、家庭功能與生活品質之現況分析…………………………………………….63
第三節 癲癇病童母親家庭功能、生活品質與疾病嚴重度、親職壓力、因應行為、癲癇烙印、照顧負擔之相關性……………………………………………….66
第四節 癲癇病童母親家庭功能與生活品質之預測因子………………………………………………….76
第五章 討論…………………………………………………………..83
第一節 癲癇病童母親家庭功能、生活品質與疾病嚴重度、親職壓力、因應行為、癲癇烙印與照顧者負擔之相關性………………………………………………...84
第二節 癲癇病童母親在家庭功能與生活品質之預測因子……………………………………………….....88
第六章 結論與建議…………………………………………………..91
參考文獻
中文部分………………………………………………………………..95
英文部分………………………………………………………………..98
附錄
附錄一 參與同意書…………………………………………………108
附錄二 兒童基本資料………………………………………………109
附錄三 母親基本資料………………………………………………110
附錄四 癲癇疾病嚴重度(Hague seizure severity scale)………..111
附錄五 臺灣版簡易生活品質量表(Short-Form 36;SF-36)…..112
附錄六 簡明親職壓力量表(Parenting Stress Index/ Short For;PSI/SF)……………………………………………………...115
附錄七 父母版癲癇烙印量表(Parent with children with epileptic Stigma Scale)………………………………………………117
附錄八 APGAR家庭功能評估表……………………………………..118
附錄九 父母因應行為量表(Parental Coping Strategy Inventory;PCSI)……………………………………………………….119
附錄十 照顧者反應評估量表(caregiver reaction Assessment ; CRA)……………………………………….……………….122
圖表目錄
圖一 影響癲癇病童母親家庭功能與生活品質相關因素架構圖…..41
表2-1 1998年國際抗癲癇聯盟(International League Against Epilepsy ; ILAE)癲癇發作國際標準分類標準之修定版………………..14
表3-1 研究工具名稱、題數、得分範圍及信度…………………….55
表4-1 癲癇病童基本屬性(N=80)…………………………………...60
表4-2 癲癇母親基本屬性(N=80)…………………………………..62
表4-3 癲癇病童母親疾病嚴重度、親職壓力、因應行為、癲癇烙印、照顧負擔、家庭功能與生活品質之得分情形(N=80)………65
表4-4 癲癇病童母親家庭功能與疾病嚴重度、親職壓力、因應行為、癲癇烙印、照顧負擔之相關性(N=80)………………...…….68
表4-5 癲癇病童母親生活品質與基本屬性之相關性(N=80)……...74
表4-6 癲癇病童母親生活品質與疾病嚴重度、親職壓力、因應行為、癲癇烙印、照顧負擔之相關性(N=80)………………………..75
表4-7 癲癇病童母親在家庭功能與生活品質之生理層面相關因素迴歸分析(N=80)…………………………………………………81
表4-8 癲癇病童母親在生活品質之心理層面相關因素迴歸分析(N=80)…………………………………………………………82
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