應用羅氏理論於一位先天性腎上腺增生病童與家庭適應疾病過程

Application of the Roy's Model for a Congenital Adrenal Hyperplasia Child and His Family

本文係以羅氏理論探討一位先天性腎上腺增生症個案與家庭適應疾病過程之居家護理經驗。筆者為個案家庭之主護護士，護理期間自89年10月25日至89年12月28日。經家庭訪視與電話訪問，藉參與性觀察與非結構性會談，以羅氏理論為依據，家庭為單位，個案為中心，評估個案家庭所面臨的護理問題有：家庭因應能力失調、家庭成員的焦慮、家庭成員親職角色衝突、家庭成員角色扮演改變、母親社交隔離、個案排便型態改變等主要居家護理問題。護理期間應用羅氏理論，結合實務經驗，協調第一胎出生家庭成員角色改變及衝突，導引家庭成員對個案不明生殖器有正確的性別認同、終生服用藥物、遺傳諮詢等先天性腎上腺增生症相關資訊。傾聽家庭成員對疾病所產生的疑慮，適時給予心理支持，進而以正向的態度與適應，渡過先天性腎上腺增生症所帶給家庭的成長與情境兩大危機。最後由於時間的限制，將個案轉介給衛生所，給予持續性追蹤與照護，達到提供個案家庭完整性照護之目的。期望藉此護理經驗，提供日後護理人員面對相關個案時有進一步的了解與認識，對護理過程有所助益。The purpose of this case report was to discuss the home care nursing experience in a Congenital Adrenal Hyperplasia(CAH) child and his family's adaptation to the disease. The writer was the primary nurse of the family, from Oct. 25 till Dec. 28, 2000. Nursing assessment data were collected through home visit, telephone interviews, observations and unstructured interviews. Based on Roy's Model, the problems which the family were faced with included ineffective family coping, family members' anxiety, conflicts between family members, family members' altered role performance, the mother's social isolation and the change of the child's stool passage. The author applied Roy's Model and experience to help the family cope with their role change and conflicts for the first baby, by correcting concept of the child's ambiguous genital, and to offer relevant information about his lifelong medication and genetic counseling. Furthermore, by listening to the doubt of the family members and giving them spiritual support, the author helped the family pass the crisis of CAH. Finally, in order to provide continuons nursing care for the family, the author referred the case to the district health center for follow-up and care. The author shared this nursing experience in the hope that it might be helpful for the nursing staff to understand CAH and the care of CAH clients.