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研究生: 周思彤
Chou, Ssu-Tung
論文名稱: 台灣發展遲緩及障礙兒童照顧者之照顧壓力負擔及心理困擾
Stress, Burden, and Psychological Distress of Caregivers of Children with Developmental Delays and Disorders in Taiwan
指導教授: 馮瑞鶯
Feng, Jui-Ying
學位類別: 碩士
Master
系所名稱: 醫學院 - 護理學系
Department of Nursing
論文出版年: 2025
畢業學年度: 113
語文別: 中文
論文頁數: 207
中文關鍵詞: 發展遲緩發展障礙照顧者照顧壓力負擔家庭脆弱性親職角色價值觀社會支持心理困擾
外文關鍵詞: Developmental Delays, Developmental Disorders, Caregiver, Caregiving Stress Burden, Family Vulnerability, Parental Role Values, Social Support, Psychological Distress
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  • 背景:發展遲緩及障礙泛指一系列發生在兒童成長過程中影響兒童認知、語言、動作、行為及必要生活技能發展的情況,這些兒童的醫療、教育與照護需求複雜,使照顧者面臨更高的身心壓力。當家庭脆弱性(如經濟困難、夫妻關係緊張)存在時,照顧壓力負擔可能進一步加劇,親職角色價值觀與照顧經驗的落差也可能同時增加心理困擾。長期高壓下,部分照顧者可能出現憂鬱、自殺意念,甚至極端行為(如自殺或殺子後自殺)。台灣關於發展遲緩及障礙兒童家庭脆弱性、親職價值觀、照顧壓力負擔、社會支持與照顧者心理困擾之間的關聯與機轉未明,需進一部探討,以利發展相關介入措施。
    目的:本研究旨在探討台灣發展遲緩及障礙兒童的父母家庭脆弱性、親職角色價值觀、照顧壓力負擔及社會支持對心理困擾(憂鬱、自殺意念、殺子後自殺意念、傷害意圖、傷害行為)的影響,並檢視社會支持在照顧壓力負擔與心理困擾及家庭脆弱性與心理困擾間的作用。
    方法:本研究為橫斷性、描述相關性研究,以匿名問卷調查研究法。在台南地區的聯合評估中心、特教學校及與發展遲緩及障礙兒童相關機構與基金會進行研究對象的招募。納入條件為育有2-18歲領有發展遲緩證明或身心障礙手冊之兒童的父母,且父母為主要照顧者,年齡≥18歲,並具備中文讀寫能力;排除條件為因健康因素無法完成問卷填答者。問卷內容包括五個部分:人口學基本資料與家庭脆弱性、照顧壓力負擔、親職角色價值觀、社會支持及心理困擾,共127題。問卷回收後,將進行資料整理與編碼,並依據研究問題及變項屬性,使用描述性統計(次數、比例、平均值、標準差)、推論性統計(卡方檢定、獨立t-test、ANOVA、皮爾森積差相關、點二系列相關以及階層迴歸分析)進行資料分析。
    結果:共有371名發展遲緩及障礙兒童的照顧者參與本研究。大多數受試者(82.5%)為母親,平均年齡為40.2歲。約半數(54.4%)照顧者至少存在一種(含)以上的心理困擾,其中以自殺意念及憂鬱最為常見,分別佔39.4%及32.1%。有19.1%的照顧者曾有殺子後自殺意念、17.5%有傷害患孩的想法,11.9%實際做出傷害患孩的行為。在自殺意念及殺子後自殺意念的主要原因與兒童的情緒、行為、照顧問題及擔心孩子的未來有關。另外,迴歸分析結果指出,照顧壓力負擔是照顧者心理困擾的重要風險因子,其顯著正向影響照顧者憂鬱程度(β = .53, p < .001)、傷害意圖(AOR = 1.03, p <.001)、傷害行為(AOR = 1.03, p < .001)、自殺意念(AOR = 1.02, p < .001)及殺子後自殺意念(AOR = 1.02, p = .004)。家庭脆弱性亦對自殺意念具有顯著的影響(AOR = 1.29, p = .019),親職角色價值觀則對殺子後自殺意念有正向影響(AOR = 1.09, p = .01)。此外,社會支持在減輕憂鬱程度(β = - .16, p < .001)、傷害意圖(AOR = 0.96, p = .01)、傷害行為(AOR = 0.93, p = .002)、自殺意念(AOR = 0.96, p = .005)及殺子後自殺意念(AOR = 0.93, p = .001)的發生發揮關鍵作用,並顯著調節了照顧壓力負擔對憂鬱的影響(照顧壓力負擔 × 社會支持 β = - .10, p = .03),進一步強調了建立有效支持系統的重要性。
    結論:本研究揭示家庭脆弱性、照顧壓力負擔、親職角色價值觀及社會支持對照顧者心理困擾的關鍵影響,為政府、醫療及教育相關領域制定支持計畫提供實證基礎。本研究強調,未來應透過提升照顧者與家庭的賦能、加強心理介入、促進跨專業、跨機構協調以及強化共親職等措施來改善現狀在資源轉介與整合、跨專業合作以及長期照顧政策等實務方面的不足。透過有效的支持策略,減輕照顧者的照顧壓力負擔、降低心理困擾風險,進一步促進家庭穩定與心理健康的提升。

    Caring for a child with developmental delays and disorders is very challenging and stressful and could be an ordeal for some parents. The stress and burden from long-term care coupled with family vulnerability, parenting expectation, and other factors may exacerbate the psychological distress of caregivers of children with developmental delays and disorders, affecting the wellbeing of caregiver and the child. Research in this area remains insufficient in Taiwan. This study aimed to examine the impacts of caregivers’ stress and burden, and associated factors on caregivers’ psychological distress. A cross-sectional, correlational study was conducted on 371 primary caregivers of children aged 2 to 18 who were diagnosed with developmental delays or possessed a disability certificate to examine this phenomenon. Participants were recruited from joint assessment centers, special education schools, and institutions or foundations related to children with developmental delays and disorders in Tainan, Taiwan. The results showed that 54.4% of caregivers experienced at least one form of psychological distress, with suicidal ideation (39.4%) and depression (32.1%) being the most common distress. Caregiving stress and burden was significantly positive related with caregivers' depression levels (β = .53, p < .001), harmful ideations (AOR = 1.03, p < .001), harmful behaviors (AOR = 1.03, p < .001), suicidal ideation (AOR = 1.02, p < .001), and filicide-suicide ideation (AOR = 1.02, p = .004). Family vulnerability and parental role values also significantly increased the risk of suicidal ideation (AOR = 1.29, p = .019) and filicide-suicide ideation (AOR = 1.09, p = .01) among caregivers. In contrast, social support demonstrated a significant protective effect against caregivers' psychological distress. The findings of this study underscore the importance of psychological interventions and support programs in alleviating caregivers' psychological distress, providing empirical evidence for policy development in government, healthcare, and education sectors.

    中文摘要 1 英文摘要 3 致謝 6 目錄 8 表目錄 10 圖目錄 12 第壹章 緒論 13 第一節 研究背景 13 第二節 研究動機與重要性 20 第三節 研究目的 23 第四節 名詞釋義 25 第貳章 文獻查證 28 第一節 發展遲緩及障礙兒童健康問題及照護需求 28 第二節 發展遲緩及障礙兒童照顧負擔與挑戰 32 第三節 發展遲緩及障礙兒童照顧者的心理健康與困擾 36 第四節 發展遲緩及障礙兒童照顧者心理困擾的影響因子 40 第五節 社會支持與家庭脆弱性、照顧壓力負擔及心理困擾 45 第參章 研究方法 47 第一節 研究設計 47 第二節 研究架構 47 第三節 研究對象 48 第四節 研究工具 50 第五節 資料蒐集流程 56 第六節 資料分析與處理 59 第七節 研究對象之倫理考量 64 第肆章 研究結果 67 第一節 研究對象人口學基本資料概況 67 第二節 發展遲緩及障礙兒童照顧者家庭脆弱性、親職角色價值觀、照顧壓力負擔、社會支持及心理困擾 72 第三節 發展遲緩及障礙兒童與照顧者人口學背景變項與照顧壓力負擔及心理困擾之相關性 83 第四節 發展遲緩及障礙兒童之照顧者家庭脆弱性、親職角色價值觀、照顧壓力負擔、社會支持、心理困擾之相關性 91 第五節 發展遲緩及障礙兒童之照顧者家庭脆弱性、親職角色價值觀、照顧壓力負擔、社會支持對心理困擾的影響 98 第伍章 討論與建議 113 第一節 主要研究結果 113 第二節 研究結果之應用 128 第三節 研究限制與未來研究建議 132 第陸章 結論 134 參考資料 135 附件一 量表授權許可 149 附件二 人體試驗委員會通過證明書 155 附件三 2018至2023年間新聞報導照顧者殺人事件整理摘要 158 附件四 量表修改一覽表 167 附件五 量表得分情形 174 附件六 人口學背景資料與照顧壓力負擔差異分析一覽表 186 附件七 人口學背景資料與傷害意圖、傷害行為、自殺意念、殺子後自殺意念關聯性分析結果一覽表 193 附件八 研究問卷 197

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