[[alternative]]Parental Experiences of End-of-Life Care and Bereavement in Pediatric Oncology - Preliminary Study

[[abstract]]背景：癌症死亡兒童的家庭會承受極大的痛苦，本研究欲以質性研究探討照顧者在癌症兒童的末期照顧和哀慟的經驗。方法：以立意採樣的方式對四位研究參與者進行單一次半結構式訪談，訪談過程錄音並建立逐字稿文本，透過海德格的此在詮釋學，研究者充分了解在末期照護及哀慟過程所發生的經驗，文本使用ATLAS.ti 9軟體，以Colaizzi的七個步驟分析。根據 Lioncoln 與 Guba 的標準來增加資料的值得信任度。結果：在末期照顧過程中的八個主題包括：尋求可能的治療，或許會有奇蹟、喜樂是良藥，讓日子充滿期待、接受孩子有一天會離開，陪伴他到最後一刻、感到束手無策及無力感、將自己的需求擺在病童之後、醫療團隊看顧家屬的情緒、共患難的家人病友家屬支持、引發正向情緒的回憶。癌症兒童過世後，專屬於孩子的豎靈和告別式可以讓照顧者少一些遺憾。哀慟歷程中的七個主題有：頓失生活重心，強烈空虛感，回憶湧現，表達哀傷的情緒、爸爸面對孩子的離開，以哭泣以外的方式表達哀傷、原有的認知∕習慣∕行為出現改變、保留孩子的東西，守著和孩子的承諾、與有共同回憶的人持續連繫、孩子用一種新的方式，和家人生活在一起、找出失落經驗的意義，並幫助有相似經驗的他人。而父母以開放且誠實的溝通，給予支持，對手足的調適有正向影響。結論：與有共同回憶的醫療團隊及病友家屬持續連繫，是癌症死亡兒童照顧者末期照護及哀慟過程重要的調適資源。[[abstract]]Background: Families who lose a child to cancer endure pain of tremencous proportions. The aim of the qualitative study was to understand how caregivers experienced end-of-life care and bereavement process. The study conduct a qualitative research of caregivers of children with cancer. Methods: In total 4 hemi-structured interviews were conducted using a purposive sampling. The interviews were recorded and transcribed. According to Heidegger’s dasien hermeneutics, the researcher gained full understandings of what happened during the end-of-life care and bereavement process. Texts were analyzed by the method of Colaizzi’s seven steps with ATLAS.ti 9 software. Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: The themes during end-of-life care include (1) asking for a second opinion; in search of a miracle, (2) a joyful heart is good medicine, (3) accepting the fact that my child will die someday, (4) feeling helpless and self-blame, (5) putting the child’s needs in the first place, (6) emotional supports from the health care providers, (7) supports from other caregivers, and (8) memories with positive emotions. There were 7 themes during bereavement identified: (1) feeling empty inside and getting teary easily, (2) Father was not able to cry, (3) interpersonal changes, (4) preserving the child’s things and keeping a promise, (5) continued contact with health care providers, (6) the child “lives” with the family in a new way, (7) finding out the meanings of the experience and supporting others in the same situation.Conclusion: Ongoing communication and connection with health care providers and caregivers in the same situation were very supportive throughout the entire process