臺灣博碩士論文加值系統

本研究目的在瞭解父母親經歷孩子接受造血幹細胞移植之家庭壓力經驗。採質性研究方法，立意取樣，以深度訪談獲得父母親經歷孩子接受造血幹細胞移植的實際生活經歷與感受。研究對象取自台灣北部某醫學中心18歲以下接受造血幹細胞移植病童之父母，能以國台語或文字與研究者溝通，經研究者說明目的後，同意參與本研究接受訪談及錄音者。本研究共分析11個家庭，資料收集時，在病童造血幹細胞移植後回到普通病房二週，採用半結構式之訪談指引，父母二人同時接受60分左右之錄音訪談，於會談後，將錄音的訪談內容逐字謄寫並萃取意義，採用內容分析法，依據Burns及Grove (1997)所提之步驟，執行資料之處理與分析，資料的信度與效度是根據質性研究的嚴謹度，採Lincoln和Guba(1985)所提的：真實性、推論性、可靠性、可證實的四個價值信任度來評價資料的嚴謹度。
研究結果顯現父母親經歷孩子接受造血幹細胞移植之家庭壓力經驗，包含父母個人經驗，父母共同經驗及家庭互動層面之經驗，涵蓋四個層面：父母親面臨孩子造血幹細胞移植的壓力、家庭生活失序、父母親的調適模式、額外的家庭資源。研究結果可增加醫護人員對病童接受造血幹細胞移植，家庭壓力經驗的認知，藉此對以家庭為中心之護理照護提供重要參考指引，以提供家庭最適切的服務，協助病童接受造血幹細胞移植，家庭的適應。
關鍵字：病童、造血幹細胞移植、家庭壓力經驗。

The purpose of this study was to understand the family stress experience during the period of children undergoing hematopoietic stem cell transplantation. The study was a qualitative research. A convenient sample was used. By in-depth interview, the real life experience and feelings of the parents during the period of their children undergoing hematopoietic stem cell transplantation was obtained. The cases of this research were parents of the children under 18 years old undergoing hematopoietic stem cell transplantation from a medical center at north Taiwan. They can communicate with the researcher by Chinese or Taiwanese in language and words. After the purpose was explained by the research, they agree to join the research and receive the interviews . Eleven families were analyzed in this research, by the time of data collection, After the posttransplantation period, children returned to normal ward for 2 weeks, Semi-structured family interviews lasting 60 minutes were conducted privately in either a hospital room or the family''s home. were audiotaped, and transcribed verbatim and analyzed word by word and the meanings were extracted By content analysis method, the date were managed and analyzed according to the procedure stated by Burns & Grove (1997). The realiability and validity were based on the trustworthiness of qualitative research. The trustworthiness of the data were examined by Lincola & Guba (1985) principles.
The result of this study showed that the family stress experience of parents of children undergoing hematopoietic stem cell transplantation includes: the experience of parents individually ; the experience of parents simulantaneously and the experience of interactions in the family. Including four dimensions: the stress of the parents facing their children undergoing hematopoieitc stem cell transplantation; family lifestyle disturbance; parents'' coping patterns; extrafamilial resources. The result of this study promotes the health-care provider’s awareness to the family stress experience of children undergoing hematopoietic stem cell transplantation. And by this way to provide significant guidelines for family centered nursing care to offer the families the optimal service and to help families with children undergoing hematopoietic stem cell transplantation for accommodation.

目錄
致謝 …………………………………………………………...I
中文摘要………………………………………………………..II
英文摘要………………………………………………………. IV
目錄………………………………………………………………VI
第一章 緒論
第一節 研究動機與重要性……………………………………1
第二節 研究目的………………………………………………4
第三節 研究問題………………………………………………4
第四節 名詞界定………………………………………………5
第二章 文獻查證
第一節 兒童接受骨髓移植之癌病與骨髓移植之概述………6
第二節 癌症病童接受骨髓移植家庭壓力……………………18
第三章 研究方法
第一節 研究設計…………………………………………….38
第二節 研究情境及對象…………………………………….39
第三節 研究步驟………………………………..……….….39
第四節 資料處理與分析…………………….……………...44
第五節 研究的嚴謹度…………………………………….….44
第四章 研究結果
第一節 個案基本資料………………………………….….…47
第二節 研究結果…………………………………………..…51
第三節 整體性描述…………………………….…….…….90
第五章 討論……………………………….………………..92
第六章 結論
第一節 護理的應用與建議……………..…………………100
第二節 研究限制……………………………………………105
參考資料
中文部分………………………………….……….…………106
英文部分………………………….……………………….…107
附件一 訪談邀請函…………………………………………113
附件二 個案基本資料………………………………………114
附件三 訪談指引…………………………………………..115
附件四 訪談分析實例……………………………………….116
附表：照護方案……………………………………………….121

參考資料：
中文部分
王玉祥（2001）‧骨髓移植面面觀‧高雄醫師會誌，31(1)，17-18‧
王振偉、張德高、謝玉林、邱宗傑、陳博明(1992)‧兒童癌症與骨髓移植‧臨床醫學，34(4)，16-20‧
方素櫻（2001）‧家庭壓力模式在內外科病房之應用‧護理雜誌，48(4)， 78-84‧
江伯倫譯（1997）‧兒童惡性腫瘤。於李旺祚等譯，尼氏小兒科學精要（pp.653－657）‧台北：藝軒。
李鍾祥總編（2001）‧個案疾病分類、年齡及性別統計表‧中華民國兒童癌症基金會會訊，71。
林凱信（1994）‧同種異體髓移植治療再發後緩解之兒童急性淋巴性白血病。中華民國小兒科醫學會雜誌，5(6)，487-494。
林國信(2001)‧綜觀台灣癌症兒童之照護‧於中華民國癌症基金會主辦‧亞太地區跨世紀癌症兒童照護研討會講義‧台北：中華民國癌症基金會。
邱宗傑（1985）‧急性淋巴球白血病與骨髓移植‧臨床醫學，15(2)，16-20。
邱宗傑（1999）‧造血細胞移植的新進展－非骨髓去除法移植的現況。臨床醫學雜誌，43(6)，401-406。
洪菱品、蕭吉晃、田蕙芬（1999）•再生不良性貧血•當代醫學，26（2），101-106‧
徐會棋（1998）•再生不良性貧血•臨床醫學，41（2），149-151。
陳月枝、劉淑娟、穆佩芬、趙可式、盧孳艷、徐亞瑛（2000）‧質性護理研究方法‧台北：護望。
陳月枝、駱麗華、曾紀瑩、余玉眉 及 Martinson, I. M. (2001，9月)‧兒童罹患癌症對台灣家庭之影響－二十年追蹤調查報告‧於中華民國癌症基金會主辦‧亞太地區跨世紀癌症兒童照護研討會講義‧台北：中華民國癌症基金會。
陳秀蓉(1990)‧學齡期兒童再接受骨髓移植治療過程的認知行為及情況。國立台灣大學護理研究所碩士論文。
陳金彌、毛新春、陳月枝和黃隸棟（2000）‧母親面對惡性腦瘤病童接受癌症療程的經驗‧護理研究，8（3），338—347。
陳博明（1996）‧Bone marrow transplantation with HLA partially matched related donors （人類白血球抗原 (HLA) 部份吻合之親屬間骨髓移植）‧中華醫誌，58，385-391。
陳耀昌等(2000)‧ Bone Marrow Transplantation in Taiwan: An Overview.中華民國癌症醫學會雜誌，16(2)，1-8。
趙明玲，高淑芬，葉健全（1998）。探討父母親照顧家中長期重度慢性疾病兒的感受。護理研究，6（3），219-229。
劉英妹(1995)‧探討母親照顧骨髓移植病童之同化與調整行為。國立台灣大學護理研究所碩士論文。
齊珍慈（2000）‧癌症病童家庭之適應過程及護理‧護理雜誌，47(4)，11-16。
穆佩芬（1995）‧家庭護理與臨床之應用‧榮總護理，12（4），244-251。
穆佩芬、馬鳳岐和顧小明等（2000）‧有罹患癌症兒童之家庭壓力—對母親衝擊‧護理研究，8（5），568—575。
鄭美玲、陳彰惠、周汎澔（2000）。青少年癌症患者的住院經驗。護理研究，8(1)，97-110。
謝淑娟、陳季員（2000）應用繪畫來探討一位學齡期兒童住院經驗的知覺。護理雜誌，47(3)，41-51。
謝素英（1997）‧骨髓移植病患之移植物抗宿主疾病的概況‧長庚護理，8（4），68-80。
顧秋芳（1993）‧一位母親面臨女兒遽患白血病情緒反應與適應行為‧護理雜誌，40（1），49-54。
英文部分
Alcoser, P. W., Burchett, S.（1999）. Bone marrow transplantation: immune system suppression and reconstitution. American Journal of Nursing.,99(6),26-31.
Barrera, M., Boyd, P., Sumbler, K.and Saunders, F.(2000). Quality of life and behavioral adjustment after pediatric bone marrow tranplantation. Bone Marrow Transplantation, 2000(26),427-435.
Bauman, L. J., Drotar, D., Leventhal, J. M., Perrin, E. C. , & Pless, I.. B.(1997). A review of psychosocial interventions for children with chronic health conditions. Pediatrics,100(2),244-251.
Berelson, B. (1971). Content analysis in communication research. New York: Free Press.
Boss.(1988).Family Stress Management. California:Sage.
Boyle, D., Blodgett, L., Gnesdiloff, S. , White, J., Bamford, A. M., Sheridan, M., Beveridge, R. (2000). Caregiver quality of life after autologous bone marrow transplantation. Cancer Nursing, 23(3),193-203.
Cain ,C.J., & Wicks, M.N.（2000）.Caregiver attributes as correlates of burden in family caregivers coping with chronic obstructive pulmonary disease. Journal of Family Nursing,6(1),46-68.
Canam, C. (1993). Common adaptive tasks facing parent of children with chronic conditions. Journal of Advanced Nursing,18 , 46-53.
Chen, Y. C. (1987). Cancer in the family in Taiwan. Recent advances in Nursing,16, 61-84.
Chen, Y. C. (1988). A Toaist model for human caring：The lived experiences and caring needs of mothers with children suffering from cancer in Taiwan. Doctoral Dissertation. University of Colorado.
Chessells, J. M. (2000). Recent advances in management of acute leukemia. Archives of Disease in Childhood, 82(6), 438-442.
Clawson, J. A. (1996). A child with chronic illness and the process of family adaptation. Journal of Pediatric Nursing,11(1), 52-61.
Cohen, M.Z., & Ley, C.D.(2000). Bone marrow transplantation: the battle for hope in the face of fear. Oncology Nursing Forum, 27(3),473-480.
Compton, K., McDonald, J. C. & Stetz, K. M. (1996). Understanding the caring relationship during bone marrow transplantation: family caregivers and healthcare professional. Oncology Nursing Forum, 23(9), 1428-1432.
Crom, D. B.(1995). The experience of South American mothers who have a child being treated for malignancy in the United States. Journal of Pediatric Oncology Nursing,12(3),104-112.
Derengowski, S. , O''Brien, E.（1999）. Critical Care of the Pediatric Oncology Patient. AACN Clinical Issues: Advanced Practice in Acute & Critical Care,7(1),109-119.
Derevensky, J.L., Tsanos, A.P., Handman, M.(1998).Children with cancer:an examination of their coping and adaptive behavior. Journal of Psychosocial Oncology,16(1),37-61.
Dodgson, J.E., Garwick, A., Blozis, S.A., Patterson, J.M., Bennett, F.C., Blum, R.W.(2000).Uncertainty in childhood chronic conditions and family distress in families of young children. Journal of Family Nursing,6(3),252-256.
Fidler ,P.A. Hibbs, C.J.(1997) .Bone marrow transplant today -- hometomorrow: ambulatory care issues in pediatric marrow transplantation. Journal of Pediatric Oncology Nursing, 14(4),228-238.
Forte, K.J. (1997).Alternative donor sources in pediatric bone marrow transplantation.Journal of Pediatric Oncology Nursing,14(4),213-227.
Foxall, M. J., Gaston-Johansson, F.(1996). Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. Journal of Advanced Nursing,24(5), 915-923.
Friedman, M. M. (I992).Family nursing:Theory and practice (3rd ed.)Norwalk, CT: Appleton & Lange.
Gaston, K. R., Raul, R. & China, H.P., (2001).St.Jude Children’s Hospital oncologist looks back on 35 years of leukemia research .（www.stjude.org./leukemia,2001/11/25）。
Granowetter, L. (1994). Pediatric oncology: A medical overview. In D.J. Bearison & R.K. Mulhern (Eds.), Pediatric psychooncology: Psychological perspectives on children with cancer (pp. 9-34).
Heath, S. (1997). Families with children diagnosed with cancer used various strategies to create a new normal routine.Journal Pediatr Nursing,12(5),278-287.
Hockenberry-Eaton, M., & Minick, P. (1994). Living with cancer: Children with extraordinary courage. Oncology Nursing Forum, 21(6), 1025-1031.
Hymovich, D. P. (1993). Child-rearing concerns of parents with cancer. Oncology Nursing Forum, 20(9), 1355-1360.
Johnson, J. (2000). An Overview of Psychosocial Support Services: Resources for Healing. Cancer Nuring, 23(4),310-313.
Joanne, S. (2001). Child Development and Family Studies：Helping Children Cope with Stress. http://www.ces.purdue.edu/terrorism/children/audio.html 2001-12 - 29.
Johns, A.（1998）. Overview of bone marrow and stem cell transplantation. Journal of Intravenous Nursing, 21(6), 356-360.
Kanarek, R. C. (1998). Facing the challenge of childhood leukemia. American Journal of Nursing, 98(7), 42-47.
Kelly, D. Ross, S. Gray, B. Smith, P. （2000）. Death, dying and emotional labour: problematic dimensions of the bone marrow transplant nursing role? Journal of Advanced Nursing, 32(4),952-960.
Ko11er, P. A. (1991). Family needs and coping strategies during illness crisis. Advanced America Critical Nursing, 2,338-344.
Lazarus, R. S., & Folkman, S. (1984). Stress appraisal and coping. New York:Springer.
Ley, C. D. (2000) .The relationships among coping strategies and depression and anxiety in adult bone marrow and peripheral blood stem cell transplantation patients. Digital Dissertation. University of Maryland at Baltmore.
Link, M. P., Shuster, J. J., & Donaldson, S. S.(1997). Treatment of children and young adults with early-stage non-Hodgkin''s lymphoma. New England Journal Medicine , 337, 1259-1266.
Liesner, R. J., Leiper, A. D., Hann, L. M., & Chessels, J. M.,(1994). Late effects of intensive treatment for acut myeloid leukemia and myelodysplasia in childhood. Journal of Clinical Oncology, 12, 916-924.
Martinson, I. M., Chao(Yu), Y. M., ＆ Chen, Y. C. (1982). Impact of childhood cancer on the Chinese family. Medical Science, 4(4), 1395- 1415.
Martinson, I. M., Liu-Chiang, Chong-Yeu, Yi-Hua, Liang（1997）. Distress symptoms and support systems of Chinese parents of children with cancer. Cancer Nuring, 20(2),94-99.
Martinson, I.M., (2001). Impact of childhood cancer on family. 亞太地區跨世紀癌症兒童照護研討會，44-48.
McDonald , J. C., Stetz, K. M.,& Compton, K. (1996). Educational Interventions for family caregivers during bone marrow transplantation. Oncology Nursing Forum, 23(9), 1432-14439.
Moore, J.B., & Mosher, R.B. (1997). Adjustment responses of children and their mothers to cancer: Self-care and anxiety. Oncology Nursing Forum, 24(3), 519-525.
Molassiotis, A; Morris, P. J. (1999).Quality of life in patients with chronic myeloid leukemia after unrelated donor bone marrow transplantation. Cancer Nursing, 22(5),340-349.
Mu, P. F., & Tomlison, P. (1997). Parental experience and meaning construction during a pediatric health crisis. Western Journal of Nursing Research,19(5),608-628.
Myer, S.A..& Oliva ,J.（2002） Severe aplastic anemia and allogeneic hematopoietic stem cell transplantation. AACN Clinical Issues: Advanced Practice in Acute & Critical Care, 13(2),169-191.
Nelson, A.E.. Miles, M.S.＆ Belyea ,M.J.(1997). Coping and support effects on mothers'' stress responses to their child''s hematopoietic stem cell transplantation. Journal of Pediatric Oncology Nursing, 14(4),202-212.
Nettina, S. (1998). The Lippincott Manual of Nursing Practice, 6th Edition.:Lippincott Williams & Wilkins.
Novakovic, B., Fears, T.R., Wexler, L.H., McClure, L. L., Wilson, D. L., McCalla, J. L.,& Tucker, M. A. (1996). Experiences of cancer in children and adolescents. Cancer Nursing,19(1), 54-59.
Prows, Cynthia, A.,McCain, Gail,C.(1997).Parental consent for bone marrow transplantation in the case of genetic disorders. Journal of the Society of Pediatric Nurses,2(1), 9-18.
Rasero, L.Errico, A. & Bertelli,A.(1997). Measures for the prevention of infections in patients with bone marrow transplantations.Rivista dell Infermiere, 16(3),139-143.
Saleh, U. S., Brockopp, Dorothy Y. (2001). Hope Among Patients With Cancer Hospitalized for Bone Marrow Transplantation: A PHENOMENOLOGIC STUDY. Cancer Nursing, 24(4) , pp 308-314.
Sally, T.(1985).The family cancer experience. Cancer Nursing,8(5),285-291.
Sanders, J.E. (1997). Bone marrow transplantation for pediatric malignancies. Pediatric Clinics of North America, 44(4),1005-20.
Schwartz, C. L.(1999). Long-term survivors of childhood cancer: the late effects of therapy. Oncologist, 4(1),45-54.
Shuster, G. F., Steeves, R.H., Onega, L., Richardson, B.,（1996）. Coping patterns among bone marrow transplant patients: a hermeneutical inquiry. Cancer Nursing, 19(4),290-297.
Smith, M.E. Burcate, S. Walker, F.(1999).Issues and care of the post-bone marrow transplant patient. Home Healthcare Consultant, 6(7 Oncology),2-7.
Stetz, K.M.,McDonald ,J.C. & Compton, K.(1996). Needs and experiences of family caregivers during bone marrow transplantation. Oncology Nursing Forum, 23(9), 1422-1427.
Streisand, R., Braniecki, S., Tercyak, K.P., and Kazak, A. E.(2001). Childhood illness-related parenting stress: the pediatric inventory for parents. Journal of Pediatric Psychology,26(3),155-156.
Stubblefield ,C. & Murray, R.L.E.(1998). Parent''s perceptions of their children''s lung transplant experiences. Journal of Family Nursing,4(4),367-86.
Thain, C. W., Gibbon（1996）. An exploratory study of recipients'' perceptions of bone marrow transplantation，Journal of Advanced Nursing，23(3)，528-535 .
Tringali CA.( 1986) The needs of family members of cancer patients. Oncol Nurs Forum,13,65-70.
Voute, P.A., Kalifa, C. Barrett, A.(1998). Cancer in Children: Clinical Management. Oxford:New York.
Weaver, A. J., Flannelly, L. T. Flannelly, K. J. VandeCreek, L. D. Koenig, H. G. Handzo, G.(2001). A 10-year Review of Research on Chaplains and Community- based Clergy in 3 Primary Oncology Nursing Journals: 1990-1999. Cancer Nursing, 24(5),335-340.
Wochna, V.(1997). Anxiety, needs, and coping in family members of the bone marrow transplant patient.Cancer Nursing,20(4),244-250.
Wong, D. L（1997）. Whaley & Wong’s Essentials of Pediatric Nursing.(6th ed). Philadephia:Mosby-Year.
Yang , C. P., Hung, I. J., & Jaing, T. H. (2000). Treatment results of the TPOG-NHL92 protocols for childhood non-Hodgkin''s lymphomas in Taiwan; a report from Taiwan Pediatric Oncology Group (TPOG). Acta Paediatr Taiwan , 41,193-204.
Yeh, C. (2001). Adaptation in children with cancer: research with Roy’s model.Nursing Science Quarterly, 14(2),141-148.