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題名:他走的很安詳,還在微笑:一位母親經歷癌症兒童瀕臨末期至死亡後之心路歷程
書刊名:長庚護理
作者:方恩真蔡佳玲
作者(外文):Fang, En-chenTsai, Jia-ling
出版日期:2002
卷期:13:4=40
頁次:頁328-338
主題關鍵詞:心路歷程母親癌症末期病童死亡質性研究Psychological processMotherCancer child terminal stageDeathQualitative study
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     本個案研究主要目的在探討一為母親經歷癌症兒童瀕臨末期至死亡後之心路歷程,為「父母經歷癌症兒童復發至死亡後的調適模式:長期追蹤研究」之前驅研究結果。採用質性研究法,以參與觀察、長期追蹤訪談及醫院病歷參考來收集資料,將訪談互動過程寫成十四篇的行為過程記錄,並根據Miles & Huberman (1944)的內容分析法來分析資料。研究結果歸納出下列的心路歷程:等待奇蹟且絕不輕言放棄、因期待差距而引發情緒外射、意識到病程走下坡而徬徨無助、企圖與所有孩子共存亡、浮現不安全感與無法勝任感、對疼痛控制出現兩極化反應、對DNR出現道德兩難的抉擇、迴避正面碰觸死亡話題、喜願圓夢以減輕遺憾、假設性推論生命期限、家人的成長轉變引發內省、重新正向詮釋死亡、盡最後的心意、喪親後引發哀慟情緒、面對現實並重新定位生活目標。本文提出臨床觀察的重要洞見,若護理人員能真正去體會及感受家屬經歷兒童生命末期至死亡的心路歷程時,將能在幽谷伴行中提供更人性化的臨終照護。
     This qualitative case study was the result of preliminary research of “Parental adaptation model from relapse to post-death of childhood cancer: a longitudinal study”. The purpose of this study was to explore a mother's psychological process with a cancer child suffering from terminal stage to post-death. Data were collected from paticipant observation, long-term follow-up interview and medical chart review. Fourteen pocess recordings from interview were done and analyzed by content analysis methods of Miles and Huberman (1994). The findings expressed a mother's (1) waiting for miracle and never give-up, (2) emotional projection due to expectation discrepancy, (3) helplessness when perceiving course of disease going downhill, (4) attemptation to coexist to die with all children, (5) emerging un-safety and incapability, (6) the reaction of polarization to pain control, (7) moral dilemma to do-not-resuscitate (DNR) decision, (8) avoiding touching death issue directly, (9) fulfilling child's wish to alleviate regret, (10) hypothetic inference of life interval, (11) family's growth and change inducing introspection, (12) reframing death in positive way, (13) sparing every efforts, (14) bereavement emotion after death of child, and (15) confronting reality and re-orientating to new goal of life. This study presented concise clinical observations that pointed out important insights. Could nursing satff perceive parents' inner psychological processes, we would be able to provide more humanistic end-of-life care in sharing the darkness.
期刊論文
1.李雅玲、陳月枝、余玉眉、鐘思嘉(19920700)。癌症死亡兒童的母親其哀傷反應及調適行為之研究。護理新象,2(7)=15,405-427。  延伸查詢new window
2.中華民國兒童癌症基金會(2001)。華民國兒童癌症基金會統計資料。中華民國兒童癌症基金會會訊,71,41。  延伸查詢new window
3.黃淑姿、湯玉英(19961200)。罹患腦瘤死亡兒童母親所面臨的失落哀傷反應及調適行為。護理雜誌,43(4),34-41。new window  延伸查詢new window
4.鍾昌宏(2000)。寧療護悲傷與哀悼。安寧照顧會訊,39,76-78。  延伸查詢new window
5.蔡佳玲、葉昭幸、李淑珠(20000300)。母親經歷癌症兒童死亡後之情緒調適。長庚護理,11(1)=29,22-32。new window  延伸查詢new window
6.Daut, R. L.、Cleeland, C. S.(1982)。The prevalence and severity of pain in cancer。Cancer,50(9),1913-1918。  new window
7.Cleeland, C.(1989)。Assessment pain in cancer case: measurement issue。Advanced Pain Research Therapy,16(1),47-55。  new window
8.Chapman, K. J.(1998)。Coping, hope, and anticipatory grief in family members in palliative home care。Cancer Nursing,21(4),226-234。  new window
9.Brandwein, R. A.、Brown, C. A.、Fox, E. M.(1974)。Women and children last: The social situation of divorced mothers and their families。Journal of Marriage and the Family,36,498-514。  new window
10.James, L.、Johnson, B.(1997)。The needs of parents of pediatric oncology patients during the palliative care phase。Journal of Pediatric Oncology Nursing,14(2),83-95。  new window
11.Vargas, L. A.、Loya, F.、Hodde-Vargas, J.(1989)。Exploring the multidimensional aspects of grief reactions。American Journal of Psychiatry,146(11),1484-1488。  new window
12.Ruden, M. B.(1996)。Bereavement follow-up: An opportunity to extend nursing care。Journal of Pediatric Oncology Nursing,13(4),219-225。  new window
13.Ferrell, B. R.(1995)。The impact of pain on quality of life. A decade of research。Nursing Clinics of North America,30(4),609-624。  new window
14.邱淑娥、黃美智(19960600)。且讓生死兩相安--一位母親面對女兒瀕死的過程。護理雜誌,43(2),56-62。new window  延伸查詢new window
15.余芳娥(19980300)。協助一位母親面對愛子瀕臨死亡之護理經驗。長庚護理,9(1)=21,53-59。new window  延伸查詢new window
16.Foley, K. M.(1985)。The treatment of cancer pain。The New England Journal of Medicine,313(2),84-95。  new window
17.謝紅桂、顏妙芬(20010600)。不予心肺復甦之探討。護理雜誌,48(3),75-78。new window  延伸查詢new window
18.黃鳳英(19981100)。喪親家屬之悲傷與悲傷輔導。安寧療護,10,69-83。new window  延伸查詢new window
19.李明濱(19971200)。病人自主與知情同意。醫學教育,1(4),3-14。new window  延伸查詢new window
20.曾紀瑩、高碧霞(19960900)。一位母親面臨青春期骨癌愛女瀕死之歷程。護理雜誌,43(3),55-60。new window  延伸查詢new window
研究報告
1.中華民國兒童癌症基金會(1993)。中華民國兒童癌症基金會未公開發表之統計資料。  延伸查詢new window
學位論文
1.林家瑩(1999)。喪失子女的父母失落與悲傷反應及復原歷程之研究(碩士論文)。國立高雄師範大學。  延伸查詢new window
圖書
1.李開敏、林方皓、張玉仕、葛書倫、Worden, J. W.(1995)。悲傷輔導與悲傷治療。台北:心理出版社。  延伸查詢new window
2.Lanzkowsky, P.(2000)。Manual of Pediatric Hematology and Oncology。California:Harcourt Inc.。  new window
3.Worden, J. W.(1991)。Grief counseling & grief therapy: a handbook for the mental health practitioner。NY:Springer。  new window
4.Wong, D. L.(1999)。Whaley & Wong's nursing care of infants and children。St. Louis:Mosby。  new window
5.胡月娟(1998)。實用人類發展學。台北:華杏。  延伸查詢new window
6.Miles, Matthew B.、Huberman, A. Michael、Newman, G.(1994)。Qualitative data analysis: an expanded sourcebook。Sage Publications。  new window
7.Lincoln, Yvonna S.、Guba, Egon G.(1985)。Naturalistic Inquiry。Sage。  new window
 
 
 
 
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