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相關文獻
- Mediators Affecting Family Function in Families of Children with Duchenne Muscular Dystrophy
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頁籤選單縮合
題名 | Mediators Affecting Family Function in Families of Children with Duchenne Muscular Dystrophy=中介因子影響杜顯型肌失養症兒童家庭之家庭功能 |
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作者 | 陳季員; | 書刊名 | The Kaohsiung Journal of Medical Sciences |
卷期 | 24:10 2008.10[民97.10] |
頁次 | 頁514-522 |
分類號 | 415.9413 |
關鍵詞 | 杜顯型肌失養症; 家庭功能; 家庭耐力; 家庭支持; 父母健康; Duchenne muscular dystrophy; Family functioning; Family hardiness; Family support; Parental health; |
語文 | 英文(English) |
中文摘要 | 杜顯型肌失養症兒童在第一次被診斷時,大多數家庭才開始接受有關疾病的專業信息。通常確立兒童診斷後父母將從專業人員收集和鑽研疾病的資訊且開始接受支持性的照護系統。然而因他們不知如何問正確的問題,獲得可近性的照護是項嚴重的挑戰。尤其此弱勢群體面對殘障過程須支持他們孩子的情緒調適和使用有效的服務系統。本研究目的,是測試杜顯型肌失養症兒童之父母其健康、家庭耐力、和家庭支持之變項的介入對預測變項 "兒童殘障" 和 "診斷時的年齡" 在正向家庭功能之影響。加入台灣肌肉萎縮協會之 126 位杜顯型肌失養症兒童之父母填寫問卷,每位對象在問卷寄出前及寄後一星期內會接到電話聯繫、並給予回郵信封和簽署同意書。問卷內容包含家庭耐力量表、家庭評估指數、家庭支持量表、杜克健康量表和人口學資料。多層模式及多層階序迴歸分析用於檢測 家庭耐力、父母健康、和家庭支持之變項介入或調整 "診斷時的年齡" 及 "家庭功能" 之間的關係。家庭耐力介入功能在診斷時的年齡和家庭功能關係間呈現正向增加的影響。研究發現有助於設計介入措施目標增強發展杜顯型肌失養症兒童之家庭的優勢。 |
英文摘要 | Most families of children with Duchenne muscular dystrophy (DMD) first receive professional information about the disease at the time of their child's diagnosis. Generally, as the families begin to build a supportive care system for their children, the parents will research DMD on their own or gather formal knowledge about the disease from professionals. However, gaining access to care is a major challenge because they often do not know how to ask the right questions. In particular, vulnerable populations may experience difficulties in assisting their child's emotional adjustment to the disability and use of available services. The purpose of this study was to test the possible effects of psychosocial mediators of parental health, family hardiness and family support on family function in relation to the age at diagnosis of children with DMD. One hundred and twenty-six Taiwanese parents of children with DMD who are members of the Taiwan Muscular Dystrophy Association filled out questionnaires. Subjects received a phone call before and again within the first week after we mailed them a questionnaire, a stamped return-addressed envelope, and a consent form. The questionnaires included the Family Hardiness Index, Family Assessment Device, Family APGAR, Duke Health Profile and demographic questions. Hierarchical multiple regressions were conducted to test whether family hardiness, parental health, or family support mediated or moderated the association between age at diagnosis and family function. Family hardiness positively mediated the association between age at diagnosis and family function. These findings may help the design of interventions to develop family hardiness in families of children with DMD. |
本系統之摘要資訊系依該期刊論文摘要之資訊為主。