由家庭韌力觀點促進罕見疾病病童家庭健康

Improve Family Health in the Family Having a Child with a Rare Disease: From Family Resilience Perspective

穆佩芬(Pei-Fan Mu) ； 楊寶圜(Bao-Huan Yang)

《源遠護理》 3卷2期 (2009/11) Pp. 15-22

https://doi.org/10.6530/YYN.2009.3(2).02

摘要

罕見疾病病童家庭因缺乏足夠的醫療資源與經濟支持而易產生家庭危機。過去專業團隊，常以問題觀點解析家庭危機失調的機轉，家庭護理介入措施也以解決家庭問題為導向。Walsh以正向觀點提出家庭韌力可促進家庭健康，故本文以正向的觀點探討家庭韌力定義及其發展史。本文亦說明Walsh之家庭韌力架構之內涵及影響因素。其架構包含信念系統、組織模式及溝通過程，並以相關實證說明其與促進家庭健康之關係。此外，亦針對提升家庭韌力的護理介入方法提出以下建議：(1)強化家庭為逆境創造意義、正面展望及超越與靈性的家庭信念，(2)強化家庭彈性、情感連接及社會經濟資源，以形塑家庭韌力，(3)建立家人溝通之清晰性、坦承的情感分享、以愛包容個別差異與負面情緒，並共同解決問題，以促進家庭健康。

關鍵字

罕見疾病 ； 家庭韌力 ； 家庭健康

並列摘要

Most of rare disease families are under crisis due to lack of sufficient medical resources and financial support. In the past, health professional teams used to analyze the mechanism of the family crisis from problem-oriented perspectives, and employed the problem-solving strategies as nursing interventions to promote family health. However, Walsh pointed out that family resilience was helpful to confront the family crisis. The Walsh's family resilience model consisted of three domains: belief systems, organizational patterns and communication process. This article described the definition of family resilience, its historical overview, and its correlates. Furthermore, according to these analyses, three strategies were suggested to promote the family health and resilience in rare disease families as below: (1) assisting family to make meaning of adversity, having a positive outlook, transcendence and spirituality, (2) enhancing family flexibility, connectedness and social resources, (3) assisting family communication with clarity, open emotional expression and collaborative problem-solving.

並列關鍵字

rare disease ； family resilience ； family health