那彩虹橋的韌性—神經母細胞瘤家庭之患病經驗與治療過程

Abstract

神經母細胞瘤(Neuroblastoma)是嬰兒最常見的固態腫瘤也是孩童第二常見的顱部惡性腫瘤，其高風險群的五年總存活率只有三成左右。本研究目的在探討家庭面對罹患罕見疾病神經母細胞瘤高風險群(High-risk group)患孩時的完整患病經驗與治療過程。運用質性研究之Giorgi (1997)的現象學研究法，以深度訪談與參與式觀察進行資料收集，採立意取樣，從主要照顧者的角度及觀點瞭解其家庭經驗，共訪得八位患孩的主要照顧者，資料達飽和。 研究結果發現，家庭的患病經驗與治療過程共涵蓋了七個範疇，可以依「時間序列」及「資源運用」兩個方面分析；前者包括四個階段性的治療過程，其為：「對剛發病的震撼與衝擊歷程」、「對疾病特性的不確定感」、「對階段性治療照護與學習經驗的歷程」及「對療程結束後的反應」；後者為三個家庭運用的資源協助，包括：「對家庭凝聚力與扶持的韌力表現」、「對醫療團隊的協助與期盼」及「對社會資源的需求與期盼」。 經由深入討論本研究的結果，發現有十項家庭韌力因子支持其家庭功能，包括了勇氣、家庭調整、學習、正向思考、靈性需求、比較、家庭溝通、支持系統、家庭期許及一致性的做法。本研究的結論是「家庭韌力」存在於每一個家庭中，當小孩罹患神經母細胞瘤疾病時，家庭會配合著臨床醫療團隊，依循著階段性治療療程及運用身旁資源幫助患孩，陪著患孩一同前進，並運用家庭的力量克服歷程中所會遇到的問題與困難。 台灣地區神經母細胞瘤的整合性治療與醫療照護團隊尚處於發展階段，本研究結果可以提供臨床專業醫療人員、社會支持團體及家庭協助者在幫助這纇病患及家庭時的參考依據，進一步發展「以家庭為中心」的協助與醫療照護指引，以協助神經母細胞瘤家庭韌力的發揮、調適並能正向地渡過整段醫療歷程。

Neuroblastoma is the most common solid tumor of infancy and the second most common extracranial malignant tumor of childhood, and its five-year overall survival rate in high-risk group approximated about 30%. The purpose of this qualitative study was to explore the illness experience and treatment process of a family with a high-risk group neuroblastoma child. A purposive sample of eight caregivers was selected to the main objective by the methods of in-depth interviews and participate-observation. Using the Giorgi (1997) phenomenological analysis method, data were analyzed and integrated to seven themes. The results of this study show that the family experiences of children undergoing treatment to class with two parts including time processes and resources. The former includes that the shockness reaction and the impact experience when the illness break out in the first stage, the uncertainty of the characterization of this disease, the experiences of the treatments course and study process, and the responses after the courses of treatments, and the later includes that the supports from family cohesion and family resilience, the assistances and expectations from health care team, and the needs and expectations from the social resource. There are ten resilience factors derived from the discussion of the results that included courage、family adjustment、learning、positive outlook、spirituality、compare、family communication、support systems、family expectance and family member accord. The results show that family resilience exists in every family, that is, every family can overcome all of the adversity and cross it hardly. Owing to the fact that the integrated treatment and the Health-Care Team are in the developing stage in Taiwan, the results of the study can promotes health professionals implement appropriate interventions as well as providers a working outline for social workers. In addition, these may be not only referenced in the guide of family center care but also helped the development of the family resilience, which can help the family to cross the whole treatment processes.