Family Resources and Parental Health in Families of Children with Duchenne Muscular Dystrophy

杜顯型肌失養症兒童家庭之家庭資源和父母健康

陳季員(Jih-Yuan Chen) ； Mary-Jo Clark

《The Journal of Nursing Research》 18卷4期 (2010/12) Pp. 239-248

https://doi.org/10.1097/JNR.0b013e3181fbe37b

摘要

背景　本研究依據家庭壓力、調適、和適應之復原力模式和家庭壓力、資源和功能模式。家庭資源如家庭耐受力和家庭支持已證明能增進家庭適應，但是家庭資源對家庭之父母健康造成中介緩衝的影響很少被證明。
目的　本文陳述台灣杜顯型肌失養症(DMD)兒童家庭之家庭支持、家庭耐受力、兒童失能的嚴重度、和父母對兒童健康狀況的知覺對父母健康的影響。
方法　針對126位台灣DMD兒童家庭之父母，問卷收集兒童的健康狀況、被診斷時的年齡、人口學變項和家庭資源變項，並以皮爾森線性相關、線性回歸、及因果模式檢驗。
結果　父母的職業和教育、對兒童健康的知覺、家庭耐受力和家庭支持與父母健康有關。兒童被診斷時的年齡與家庭耐受力有關，且間接地影響父母的健康。
結論／實務應用　護理介入家庭耐受力和家庭支持的促進，不只是維護父母健康也增進家庭面對患孩病症的適應。透過健康促進、精神和心靈的照護、經濟的支持、和社區服務的方便性，藉計劃增強耐受力和支持，可引導父母擁有較佳的健康和帶給全家人的健康和適應。

關鍵字

家庭耐受力 ； 家庭支持 ； 父母健康 ； 家庭資源 ； 杜顯型肌失養症DMD

並列摘要

Background: This study was based on two models, namely, the resiliency model of family stress, adjustment, and adaptation and the model for family stressors, resources, and function. Family resources, such as family hardiness and support, have previously been shown to improve family adaptation. There is little evidence for the potential buffering effects of family resources on parental health in families of children with Duchenne muscular dystrophy (DMD).
Purpose: This article reports on relationships among family support, family hardiness, severity of child disability, and parental perceptions of child health status variables and their influence on parental health in families of children with DMD in Taiwan.
Methods: A total of 126 parents, all with children suffering from DMD, were recruited for this study. Associations between child health status, age at diagnosis, demographics, and family resource variables were examined using Pearson linear correlation, linear regression, and causal modeling.
Results: Parental employment and education, perceived child health, family hardiness, and family support were found to correlate with parental health. Age at diagnosis correlated with family hardiness but not directly with parental health.
Conclusions/Implications for Practice: Nursing intervention to promote family hardiness and support can help maintain parental health and promote family adaptation in the face of a child's chronic disease. Caregiving programs should also promote parental health by enhancing family hardiness and support. Family members' support through health promotion, psychological and spiritual care, financial support, and convenient community services can lead to better parental health and contribute to overall family health and adaptation.

並列關鍵字

family hardiness ； family support ； parent health ； family resource ； Duchenne muscular dystrophy

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