讓我聽聽你的童癌童語－癌症兒童及其家屬的經驗自白

衛生福利部國民健康署資料顯示，自1982年以來「癌症」已長期位居成年國人10大死因之首，也是造成18歲以下兒童死亡主因的第2名，截至2017年，全臺共有10,419名正在治療中的癌症病童。中華民國兒童癌症基金會多年研究發現，全國每年新發病的18歲以下兒童癌症患者，平均約有550人，發生率約為10萬分之8～10，死亡率近年則維持在10萬分之3左右。根據2015年衛福部統計的全癌症申報人數，成年人癌症的初次診斷患者有15,000多人，兒童癌症初次診斷患者只有498人，遠少於成年人罹患癌症的人數，因此大部分民眾因切身性不足，對兒童癌症理解較少或甚至完全不知情；政府也將醫療資源大量投入成人癌症當中，癌症病童的醫療環境並無得到足夠重視。本深度報導論文透過資料爬梳及與多名癌症兒童及其家庭、醫療人員、兒童醫療相關支持團體的深度訪談，讓社會大眾能更了解病童及其家庭在抗癌過程中的努力及困難之處、社會支持團體的重要性及主張及專家學者對政府政策的改善建議，希望社會大眾及政府更加關注「兒童癌症」議題，幫助病童及其家庭重新振作再出發。

關鍵字

病童；兒童癌症；癌症兒童家庭；兒童支持團體；兒童安寧緩和醫療

並列摘要

According to the statistics of Health Promotion Administration, Ministry of Health and Walfare, since 1982, “cancer” has been the first of 10 leading causes of death in Taiwan. Also, it’s the second causes of death among 0 to 18 years old children and teenagers, which only falls behind of accident. Up to 2017, there are 10,419 children with cancer who are under treatment in Taiwan. Based on Childhood Cancer Foundation’s reaseach in many years, there are about 550 children who are diagnosed with cancer per year on average. The incidence rate of childhood cancer is 8 to 10 hundred thousandth, and the death rate has remained 3 hundred thousandth these years. In 2015, there were 15,000 adults who were first diagnosed with cancer, while there were only 498 children who were first diagnosed with cancer, according to the Ministry of Health and Walfare. The differences in these two populations causing most of the public don’t have similar experiences in life, so they don’t know or know very little about childhood cancer. Even worse, the government has put most of the medical resources into the adult cancer, making the medical environment of childhood cancer not taken seriously. By collecting data and interviewing with several children with cancer, their families, healthcare professionals, and supporting groups for children, this in-depth report let the public know more about children with cancer and their families’ stories, efforts and difficulties while fighting with childhood cancer together. The thesis also discussed the importance of the supporting groups for children and the things that they are doing. Last of all, the experts and the scholars have given some suggestion to the policies of children healthcare, hoping that the society and the government pay more attention to the issue of “Childhood cancer”. Through more people’s awareness and help, the children with cancer and their families will recover soon and keep going on their lives.