當馬賽克逐漸透明－青少年癌症患者之病情告知

在社會工作的專業價值原則中，自主權益一直是被重視的，因應病人自主權利法於近期通過，醫療體系對於病人的相關自主權益維護的作為面臨完善與否的考驗。病人自主權益的首要門檻即為病情告知議題，研究者在實務現場發現青少年癌症患者的罹患人數日漸增加，但其自主權益卻未被完整的維護，相關文獻也指出青少年癌症患者在病情告知上因為家長的疑慮而無如實告知，部分家庭也因此衝突，既有研究中更鮮少以青少年作為研究主體，討論其認知中的病情告知樣態與感受。　　本研究採質性研究典範，使用半結構性訪談作為主要研究方法，進行家長與青少年的配對訪談，探討青少年癌症患者病情告知之經驗、感受與對病情告知之建議與期待，同時討論青少年癌症患者之家屬對於青少年癌症患者病情告知之疑慮與建議。最後完成11位有效訪談，其中包含6位青少年與5位家長；在研究分析部分採扎根理論模式，透過發現研究受訪者的回應樣態同質性，找出病情告知的類型與模式。　　青少年癌症患者的病情告知方式可細分為疾病告知當下與病情溝通模式兩者討論。首先除醫療團隊第一時間未經過家長同意時就直接告知病人外，患者家長會經歷告知疑慮與告知醞釀的時期，青少年此時也會反覆地追問或質疑，才使得家長據實以告。確診時期的疾病告知樣態可分為：「直接告知型」、「漸進告知型」、「先隱瞞後告知型」。而治療時期的病情溝通方式可以分為：「病人自主溝通模式」、「協助自主模式」、「家長代理模式」。研究發現在溝通過程中，當青少年能參與更多醫療決策過程時，除了使青少年的自主權益提升外，也能有效使青少年、家長與醫療團隊三者間有更正向的互動模式，更能使家長減低替孩子抉擇的焦慮與自責。在病情告知的建議與期待部分，家長與青少年回應告知時應：「直接透明」、「詳細清楚」、「溫和正向」、「尊重個體差異」，才能使病情告知的過程較為順利並能有效減低告知過程中對家庭造成的情緒負擔。　　除此之外，本研究也發現：(1)青少年認知能力相當成熟，在家長思考告知對策時青少年可能已了然於心，因此告知有時效性的議題，切忌說謊、敷衍與拖延過久；(2)疾病過程中的突發事件（如病友死亡）是病情溝通的良好契機，透過與青少年討論突發事件可以有效幫助青少年減緩焦慮並達成醫療模式取向的共識。(3)除了口頭告知策略外，研究發現手冊、疾病刊物與社工輔助皆是有品質的告知輔助策略，另外因應網路查詢功能便捷化，網路平台資訊的也是未來可發展之告知策略。

關鍵字

青少年；癌症；病情告知；疾病告知；親子溝通；醫病關係

並列摘要

In the professional value of social work principles, Autonomy has always been taken seriously. In response of “Patient Self-determination Right Act” passed recently, the health care system should develop more completely to maintain patients’ willing and dignity. Speaking of “Patient Self-determination Right Act”, the key to actually reaching it, is by telling them the truth of their illness. Researcher has found that the number of adolescent cancer patients is rising, but they haven’t been given due autonomy. Furthermore, literatures point out that adolescent cancer patients haven’t been fully informed of the illness because of their the parents’ anxiety. A part of this situation even became family disputes. Though, very less studies takes adolescent patients as subject, or knowing their feelings about “truth telling”. This research is a qualitative research, using semi - structured interviews as primary research method, in order to explore adolescent cancer patients’ experiences and feelings of truth telling, researcher made the parents and adolescents into pairs, the families’ concerns and their recommendations would also be discussed in this study. Finally, 11 valid interviews have been completed, including six teenagers and five the parents. Researcher used “Grounded theory” as the analysis mode, trying to find the response sample configuration homogeneity and to identify the type of truth telling mode. Adolescent cancer patients’ truth telling can be divided into “Confirmed moment” and “Daily communication”. First of all, except the medical team inform the patient directly without parental consent at the first moment, most of the parents will have some misgivings and hesitation about how to tell their children. Adolescents might question intensively or try to challenge their parents for acknowledging their illness. The pattern of confirmed moment truth telling can be subdivided into: “Direct informed type”, “Gradually informed type” and “Informed after lying type”. The pattern of daily communication truth telling can be subdivided into: “Patient autonomous communication mode”, “The parents helping autonomous mode” and “Parent proxy mode”. Researcher have found that if adolescents can participate more in the medical decision-making process, not only can make the autonomy rights of adolescents rise, but also can facilitate the communication quality for adolescents, the parents and medical teams. The parents can also reduce anxiety and self-accusation while acting as the agent of their own children. In the part of suggestions and expectations, the parents and the adolescents considered that truth telling should be: "Direct and open", " Detailed and clear ", "Kind and positive" and "Respect individual differences". Through these methods, we can make truth telling more smoothly and reduce emotional stress to those families. In addition, Researcher also found that: (1) Adolescents' cognitive is quite mature, they might know the truth of illness when the parents are still hesitating. That is, lying, procrastinating and perfunctory are not good ways. (2) Emergencies are good opportunities to communicate with adolescents. Through the discussion, it can effectively help adolescents alleviate their anxiety and reach medical consensus. (3) Moreover, this study have found that manuals, disease publications and social workers’ supports were also useful for truth telling. Otherwise, because of the fact that web search function is quite convenient now, developing the correct network information should be taken into consideration in the future.