- 期刊
照顧一位脊髓性肌肉萎縮症病童家庭之護理經驗
Nursing Experience of Caring for a Child with Spinal Muscular Atrophy by the Family Resiliency Model
摘要
脊髓肌肉萎縮症(Spinal Muscular Atrophy, SMA)為嬰幼兒時期罕見的神經肌肉病變，屬於體染色體隱性遺傳疾病。對一個家庭而言，當家中有一位罕見疾病病患時，加在父母身上的壓力是難以想像的沈重，從一開始的驚嚇、否認，過程中的接受、調適，到最後重新組織，這漫長的歷程也只有親身面臨的父母才能了解。雖然疾病的發生讓家庭生活遭遇到更多更大的挑戰，重新安排家庭的資源以因應此一挑戰，並協助家人在有限的時間、金錢、及精力下擁有最佳的生活狀況，則是每個罕見疾病家庭值得追求的方向。 本文運用McCubbin(1995)之家庭復原力模式(Family resiliency model)評估一位罹患脊髓肌肉萎縮症病童之家庭調適與需求，發現此家庭積聚的壓力正在減損家庭成員個人與整體的健康，原有的因應能力己不敷使用，正處於調適不良的危機當中，運用內外在資源解決問題，以增加家庭成員間的互動並提升家庭功能，以協助家庭順利渡過疾病危機的家庭護理。
並列摘要
Spinal Muscular Atrophy (SMA), an autosomal recessive disorder, is one of the rare neuromuscular diseases of infants and early childhood. The burden on parents having such a child is so enormous; it could only be appreciated by themselves going through a long and dark tunnel from the shock and denegation in the beginning, leading to acceptance and adjustment during this course, and reorganization at last. Even though the whole family has to face more and larger challenges, family members can still pursue a better quality of life via efficient re-arrangement of their time, energy and money. In this study, we used the Family Resiliency Model (proposed by McCubbin 1995) to access the adjustment and adaptation in a family of a suffering child with SMA. We found that the accumulation of stresses and the dealing with uncertainty was most harmful. By applying various nursing interventions (i.e. education, family conferences, and empathetic listening), we guided the family members toward a positive approach and understanding and negotiated care plans that might help them in adapting the impact they faced.