研究建議與應用

第五章討論

第四節研究建議與應用

本研究旨在探討少年罹患癌症後的生活經驗，研究結果發現少年罹癌後普遍經歷種種無法參與的生活經驗，包括延宕的學校課業、受限的娛樂

活動、疏離的同儕互動及單調的居家生活；經歷癌症的過程，少年普遍遭受苦難的生活經驗，包含了症狀的困擾、治療的苦楚、復發的折磨、就醫的束縛及食療的負擔；在艱苦的抗癌經歷中，少年亦普遍遭受與情緒相關的生活經驗，有懼怕、擔憂、難過、生氣及孤單等；儘管罹癌過程很受苦，

但是少年經歷到某些較正向的生活經驗，如緊密的家庭關係、樂觀的正向思維及健康的生活習慣。本研究結果可以提供臨床、行政、教育及研究四方面的應用與建議如下：

一、臨床

由於本研究結果來自罹癌少年的主觀觀點，藉由瞭解他們生活的經驗，才能提供更臻完善的全人照顧，研究結果可作為兒癌醫療從業人員及各個跨團隊醫療人員照護罹癌少年時的參考。醫療人員須瞭解「癌症」對少年而言，絕非僅限於身體的苦難。保護隔離措施會使他們失去到校就學的機會，這對於正須要同儕參與生活及以課業為重的少年而言，是莫大的衝擊，少年可能因而失去家庭以外的支持系統，而醫療人員更可能是他們最大的支柱，因此提供他們適當支持性的照護是很重要的。

醫療人員也必須瞭解，不論少年經歷多久的疾病症狀，或多少次檢查和治療的副作用，不代表少年應該習慣或因應那些情境與痛苦，試著瞭解少年的害怕和恐懼，提供適當的介入性關懷，以減輕他們的痛苦及恐懼，

例如：少年提到腰椎穿刺或靜脈注射困難導致他們的壓力或疼痛，針對此

狀況醫療單位應可安排較資深或注射技巧較好的人員執行。而當少年面對痛苦產生排斥或以情緒為導向的因應措施時，並不代表他們沒有足夠的勇氣面對罹癌過程，更應採取不批判的同理態度，接納少年的行為並提供正向的鼓勵與支持。

二、行政

罹癌少年是一群因情勢所逼，而必須採取在家自行教育的弱勢族群，

建議相關單位應正視此議題，提出較符合公平正義的教育方案，使他們能夠享有相等教育的權利。鑒於受訪少年電腦通訊的能力，建議可以採取網路教學，或學校與家庭之間的遠距教學方法，讓罹癌少年不僅可以獲得更多的教育資源，也能夠藉此與同儕共同學習互動。

醫院方面，如果能給予這群處處受限的孩子更多的活動空間，讓少年不再感受到醫院如同牢籠般，對他們的身心定有很大的助益，例如設置癌症少年專用的圖書室及遊戲室，或利用透明玻璃建造可以看到戶外的活動空間，不然也可以將病房稍加彩繪佈置成較溫馨、活潑的格調等。另外本研究也發現罹癌少年曾經歷相當多負向的情緒，建議醫院軟體方面，配置或培訓專責兒童癌症病房的心理諮商專業人員，如同國外之「醫療輔導師 (Child Life Specialist)」或「遊戲師(Play Specialist)」。

三、教育

罹癌後少年就學型態改變及身體外觀改變，讓他們對於別人的眼光感

到不舒服。建議教育單位可以在學校內或透過傳播媒體定時進行關於「罹癌少年生活經驗」的衛生教育，讓學生及老師和一般民眾都能瞭解少年抗癌歷程的辛苦與堅毅，學習如何尊重及正常看待少年改變的身體外觀，並適時的提供他們幫助。護理人員面對新發病的罹癌少年時，也可以透過在學校舉辦衛生教育，教導不知所措的老師和學生，學習如何與癌症少年建立正向的關係。

四、研究

由於本研究以中部某醫學中心作為試驗場所，建議未來可以擴大至全台之罹癌少年，如此可以突破地域性之研究限制，以作為台灣罹癌少年之生活經驗的探討。再者，本研究結果缺乏癌症末期少年的生活經驗，建議未來執行研究者可以將此階段之罹癌少年納入計畫中，如此對於罹癌少年生活經驗的本質將會更臻完整。

本研究結果發現辦理在家教育的少年，普遍感到受限的教育師資及課程內容的不足，罹癌少年是實施在家自行教育中，屬於較弱勢的族群，建議未來研究者可以針對此主題再深入探討，以作為改善罹癌少年接受教育權利先驅研究。又本研究亦發現，父母提供的食物療法對少年而言是一大負擔，建議未來可針對罹癌少年與父母對於食物療法進行相關研究，以減輕少年在艱難的罹癌過程中額外的負擔。

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第五章 討論

第四節 研究建議與應用