| 研究生: |
蔡孟瑤 Tsai, Meng-Yao |
|---|---|
| 論文名稱: |
「在不確定中找尋定位點」父母面對新生兒甲狀腺低功能症篩檢陽性結果之經驗歷程 Anchor finding within uncertainty experience: The process of parental experience about encountering the positive result of newborn screening on congenital hypothyroidism |
| 指導教授: |
黃美智
none |
| 學位類別: |
碩士 Master |
| 系所名稱: |
醫學院 - 護理學系 Department of Nursing |
| 論文出版年: | 2006 |
| 畢業學年度: | 94 |
| 語文別: | 中文 |
| 論文頁數: | 125 |
| 中文關鍵詞: | 父母經驗歷程 、不確定 、新生兒甲狀腺低功能症篩檢 |
| 外文關鍵詞: | uncertainty, congenital hypothyroidism, parental experience |
| 相關次數: | 點閱:118 下載:4 |
| 分享至: |
| 查詢本校圖書館目錄 查詢臺灣博碩士論文知識加值系統 勘誤回報 |
本研究以紮根理論法探索10位甲狀腺低功能症篩檢陽性結果新生兒的母親及8位父親於面對新生兒甲狀腺低功能症篩檢陽性結果時,與環境互動之下的經驗歷程,最後以父母親的真實經驗建立「在不確定中找尋定位點」理論。
研究者以參與觀察方式,收集父母帶新生兒到醫學中心進行複診及確診期間的反應及行為,並在確診後一個月內進行深入訪談,共得 26篇實地札記,18份訪談逐字稿,而後以持續性比較法進行資料分析與編碼,整理出此經驗歷程包含「心慌意亂:出乎意外的消息」、「既期待又怕受傷害:難熬的等待」、「臨機應變:先了解再打算」、「平心靜氣:面對診斷的心理準備」、「喜憂參半:對未來擔憂和不確定」五個範疇,發展出「在不確定中找尋定位點」作為理論的核心概念。
「在不確定中找尋定位點」理論呈現父母親在面對新生兒篩檢陽性結果時,經歷等待診斷的忐忑以及無法預測的未來之不確定過程;歷程中父母不斷在孩子罹病的可能與罹病所帶來的後果之間尋找定位點,欲找到ㄧ個安心、可以接受的定位,主要目的在於減少父母面臨診斷前的不安,增加面對診斷的信心。
研究結果可以增進健康照護者了解父母面對篩檢陽性結果時的反應。建議未來可以朝如何幫助父母在歷程中找到定位點以及建立雙向溝通的管道作進一步的研究。
The purposes of this study were (1) to explore parents’ experience about encountering the positive result of newborn screening on congenital hypothyroidism (CHT); (2) to generate knowledge about the parents’ uncertainty experience and coping process since they received positive CHT screening result till being disclosed diagnosis period.
Eighteen subjects (10 mothers and 8 Fathers) were recruited from a referral medical center in southern Taiwan. Data was collected through field observation and semi-structure interviewing over 5 months in 2004 .The comparative method (grounded theory) was used to analyze data. Five categories were revealed which included “Panic-stricken: due to unexpectedly news”, “Anticipation versus fear: unendurable waiting“,”Articulating by situation changes: calculating and planing”, “Stay calm: preparation for receving diagnosis” and” Relief but worring: the uncertain future”. Finally, “Anchor finding within uncertainty experience “was generated as a core issue. This theory of described how parents cope wth uncertainty and interacte with health care provider. It also explains the process of decreasing parents’ distress and increasing their bearing capacity before being disclosed the diagnosis.
In conclusion, the relevent interventions need to be established, especially in waiting time before CHT diagnosis is made. Implications for future studies in examining communication process between parents and health provider are suggested.
中文文獻
內政部(無日期)‧中華民國九十二年臺灣地區粗出生率、粗死亡率與自然增加率統計資料‧2005年1月19日取自http://www.doh.gov.tw/statistic/data/生命統計/92/A-5.xls
牛道明、林秀娟(2004)‧台灣新生兒篩檢簡介‧於李明亮主編,代謝性疾病:台灣經驗(8-28頁)‧台北:合記。
行政院衛生署(1997)‧新生兒先天性代謝異常疾病篩檢作業手冊‧行政院衛生署:台北。
行政院衛生署國民健康局(2002)‧台灣地區新生兒篩檢統計表‧台中:國民健康局。
江傳箕(2004年10月)‧新生兒篩檢指定項目檢驗方法之最新變革‧於行政院衛生署國民
健康局主辦,九十三年度新生兒篩檢業務研討及聯繫會‧台北:台灣大學醫學院。
呂宜珍、林秀娟、黃美智(2003)‧新生兒篩檢之社會衝擊及倫理考量‧台灣醫學,7(5),774-779。
李家桂、呂宜珍、林秀娟、黃美智(2004)‧台南市新生兒篩檢資訊提供過程與提供者教育訓練之現況探討‧慈濟醫學,16(1),43-50。
林本炫(2003)‧紮根理論法評介‧於齊力、林本炫編,質性研究方法與資料分析(171-200頁)‧嘉義:南華大學社教所。
林本炫(2004)‧質性研究資料分析電腦軟體:ATLAS.ti操作手冊‧於林本炫、何明修編,質性研究方法及其超越(263-306頁)‧嘉義:南華大學社教所。
林秀娟(2004)‧新生兒先天代謝異常篩檢之回顧‧於李明亮主編,代謝性疾病:台灣經驗(6-7頁)‧台北:合記。
林炫沛(2002)‧認識小兒先天性疾病‧台北:華城圖書。
周承珍、李從業、施富金(2001)‧母血篩檢唐氏症陽性孕婦面對羊膜穿刺術的決策過程‧護理研究,9(1),15-27。
柯乃熒、蕭琪、許淑蓮(1999)‧不確定之概念分析‧護理雜誌,44(1),92-97。
胡幼慧、姚美華(1996)‧一些質性研究方法上的思考:信度與效度?如何抽樣?如何蒐集資料、登錄與分析?‧於胡幼慧主編,質性研究:理論、方法及本土女性方法研究實例(141-158頁)‧台北:巨流。
徐宗國(1996)‧紮根理論研究法‧於胡幼慧主編,質性研究:理論、方法及本土女性方法研究實例(47-73頁)‧台北:巨流。
徐宗國(2001)‧拓邊照顧工作:男護士在女人工作世界中得其所愛‧台灣社會學刊,26,163-209。
孫瑞瓊(2001)‧高齡孕婦面對羊膜穿刺術之經驗歷程與因應行為‧未發表的碩士論文,台北:國立陽明大學。
陳怡如、陳俞琪、黃淑鶴、盧純華(2003)‧新進護理人員面對壓力之成長經驗‧慈濟醫學,15(6),391-398。
郭薏萍、黃美智(1996)‧獲知新生兒為甲狀腺功能低下症篩檢陽性:母親之情緒反應及其影響‧慈濟醫學,8(3),231-237。
黃美智(2004)‧透視新生兒篩檢‧科學發展,378,22-27。
黃美智、王瑤華、呂宜珍、李佳桂、林秀娟(2005,1月)‧遺傳檢測之知情同意與結果告知:新生兒篩檢與羊膜穿刺術‧於國立成功大學醫學院護理學系主辦:遺傳諮詢與教育之生命倫理議題國際學術研討會‧台南:國立成功大學。
趙美琴(1999)‧先天性甲狀腺低能症治療經驗談‧高醫醫訊,19(5),11-12。
蔣思慧、蕭廣仁(2003)‧新生兒先天代謝異常疾病篩檢‧於翁瑞亨、劉丹桂、陳信孚等合著,優生保健(219-250頁),台北:華杏。
蔡文友(1995)‧台灣地區新生兒甲狀腺低能症新生兒篩檢-臺大醫院篩檢中心之經驗‧當代醫學,22(10),831-832。
英文文獻
Al-Jader, L. N., Goodchild, M. C., Ryley, H. C., & Happer, P. S. (1990).
Attutides of parents of cystic fibrosis children towards neonatal screening and antenatal diagnosis. Clinical Genetics, 38 , 460-465..
Babrow, A. S. (2001). Uncertainty, value, communication and problematic integration. Journal of Communication, 51, 553–573.
Baroni, M. A., Anderson, Y. E., & Mischler, E. (1997). Cystic fibrosis newborn screening: Impact of early screening results on parenting stress. Pediatric Nursing, 23(2), 143-151.
Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. NY: Oxford.
Berkenstadt, M., Shiloh, S., Barkai , G., Katznelson, M. B., & Goldman, B. (1999) . Perceived personal control (PPC): A new concept in measuring outcome of genetic counseling. American Journal of Medical Genetics. 82(1), 53-59.
Bodegard, G., Fyro, K., & Larson, A. (1983). Psychosocial reactions in 102 families with a newborn who had a falsely positive screening test for congenital hypothyroidism. Acta Paediatrica Scandinavica, 304(Suppl.), 1-21.
Bradac, J. J. ( 2001). Theory comparison: Uncertainty reduction, problematic integration, uncertainty management, and other curious constructs. The Journal of Communication, 51(3), 456–476.
Brashers, D. E. (2001). Communication and uncertainty management. Journal of Communication, 51, 477–497.
Brashers, D. E., Goldsmith, D. J., & Hsieh, E. (2002). Information seeking and avoiding in health contexts. Human Communication Research, 28, 258–271.
Brashers, D. E., Neidig, J. L., Haas, S. M., Dobbs, L. K., Cardillo, L. W., & Russell, J. A.(2000). Communication in the management of uncertainty: The case of persons living with HIV or AIDS. Communication Monographs, 67, 63–84.
Burns, N., & Grove, S. K. (2001). Ethics and research. In The practice of nursing research: Conduct, critique & utilization. (4th ed., pp. 191-222). Philadelphia: W.B. Saunders.
Brun, W., & Teigen, K. H. (1988). Verbal probabilities: Ambiguous, context-dependent, or both? Organizational Behavior and Human Decision Processes, 41, 390-404.
Campbell, E., & Ross, L. F. (2003). Parental attitudes regarding newborn screening of PKU and DMD. American Journal of Medical Genetics, 120(2), 209-214.
Carreiro-Lewandowski, E. (2002). Newborn screening: An overview. Clinical Laboratory Science, 15(4), 229-238.
Ciske, D.J., Haavisto, A., Laxova, A., Rock, L. Z. M., & Farrell, P.M. (2001). Genetic counseling and neonatal screening for cystic fibrosis: An assessment of the communication process. Pediatrics, 107, 699-705.
Clarke-Steffen, L. (1993). Waiting and not knowing: The diagnosis of cancer in a child. Journal of Pediatric Oncology Nursing, 10(4), 146-153.
Clayton, E. W. (1992). Issues in state newborn screening programs. Pediatrics, 90(4), 641-625.
Collins, V., Halliday, J., Kahler, S., & Williamson, R. (2001). Parents experiences with genetic counseling after the birth of a baby with genetic disorder: an exploratory study. Journal of Genetic Counseling, 10(1), 53-72.
Dillard, J.P., & Carson, C. L. (2005). Uncertainty management following a positive newborn screening for cystic fibrosis. Journal of Health Communication, 10, 57-76.
Eaton, R. B., Comeau, A. M., Zytkovicz, T. H., & Larson, C. (2002). Newborn screening: New developments in a proven field. Clinical Laboratory Science, 15(4), 239-244.
Farrell, M. H., Certain, L. K., & Farrell, P. M. (2001). Genetic counseling and risk communication services of newborn screening programs. Archives of Pediatric & Adolescent Medicine, 155(2), 120-125.
Flaskerud, J., & Rush, C. (1989). AIDS and traditional health beliefs and practice s of black woman. Nursing Research, 38(4), 210-215.
Fyro, K. (1988). Neonatal screening: Life stress scores in families given a false-positive result. Acta Paediatrica Scandinavica, 77, 232-238.
Fyro, K., & Bodegard, G. (1987). Four-year follow-up of psychological reactions to false positive screening tests for congenital hypothyroidism.
Acta Paediatrica Scandinavica, 76, 107-114.
Fyro, K., & Bodegard, G. (1988). Difficulties in psychosocial adjustment to a new neonatal screening programme. Acta Paediatrica Scandinavica, 77, 226-231.
Grant, D. B. (1995). Congenital hypothyroidism: Optimal management in the light of 15 year's experience of screening. Archives of Disease in Childhood, 72, 85-89.
Green, J. M., Hewison, J., Bekker, H. L., Bryant, L. D., & Cuckle, H. S. (2004). Psychosocial aspects of genetic screening of pregnant women and newborns: A systemic review. Health Technology Assessment, 8(33), 1-87.
Hallowell, N., Statham, H., Murton, F., Green, J., & Richards, M. (1997). Talking about chance: The presentation of risk information during genetic counseling for breast and ovarian cancer. Journal of Genetic Counseling, 6(3), 269-286.
Hansen, D. & Deholm, B. (1992). Psychosocial consequences of screening programs in childern. Nordisk Medicine, 107, 280-282.
Hopwood, N.J. (2002). Treatment of the infant with congenital hypothyroidism. The Journal of Pediatrics, 141(6), 752-754.
Horner, S.D. (1997). Uncertainty in mother’s care for their ill children. Journal of Advanced Nursing.26, 658-663.
Hsiao, P. H., Chiu, Y. N., Tsai, W.Y., Su, S.H., Lee, J. S., & Soong, W. T. (1999). Intellectual outcome of patients with congenital hypothyroidism nor detected by neonatal screening. Journal of Formosa Medicine Association, 98(7), 512-515.
Hsiao, P. H., Chiu, Y. N., Tsai, W.Y., Su, S.H., Lee, J. S., & Soong, W. T. (1999). Intellectual outcome of patients with congenital hypothyroidism detected by neonatal screening. Journal of Formosa Medicine Association, 100(1), 40-44.
Hyerdahl, S. (2001). Long term outcome in children with congenital hypothyroidism. Acta Pediatrics, 90, 1220-1222.
Huang, M. C., & Lin, S. J. (2003). Newborn screening: Should explicit parental consent be required. Acta Paediatrica Taiwanica, 44(3), 126-189.
Jonsen, A. R., Siegler, M., & Winslade, W. J. (2002). Contextual features. In Clinical ethics: A practical approach to ethical decisions in clinical medicine (pp. 183-191). New York: McGraw-Hill.
Kemper, A. R., Fant, K. E., & Clark, S. J. ( 2005). Informing parents about newborn screening. Public Health Nursing, 22 (4), 332-338.
Kenner, C. & Dreyer, L. A., (2000). Prenatal and neonatal testing and screening: A double-edged sword. Clinical Genetics, 35(3), 627-641.
Kwon, C., & Farrell, P. M. (2000). The magnitude and challenge of false-positive newborn screening test results. Archives of Pediatrics & Adolescent Medicine, 154(7), 714-718.
Ladhani, S. (2004). The risks and benefits of neonatal screening. British Journal of Midwifery, 12(1), 24-29.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. N.Y. : Springer
Lazarus, R. S., & Folkman, S. (1988). The relationship between coping and emotion: Implications for theory and research. Social Science & Medicine, 26(3), 309-317.
Li, K. C. K., Lai, S. S. L., & Lam, S. T. S. (1999). Adequacy and pitfalls of G6PD deficiency counseling in Hong Kong. South Asian Journal of Tropical Medicine & Public Health, 2, 79-83.
Li, R.G., & Carvin, T. (2003). Moving from information transfer to information exchange in health and health care. Social Science and Medicine. 56. 449-464.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic Inquiry. CA: Sage.
Lloyd-Puryear, M. A., & Forsman, I. (2002). Newborn screening and genetic testing. Journal of Obstetric Gynecologic and Neonatal Nursing, 31(2), 200-207.
Lvkvist-Andersen, A-L, Olsson, R., Ritchey. T., & Stenstrm, M. (2004). Modeling society’s capacity to manage extraordinary events. paper presented at the Society for Risk Analysis Conference. Paris, France.
Lott, J. A., Sardovia-Iyer, M., Speakman, K. S., & Lee, K. K. (2004). Age-dependent cut off values in screening newborns for Hypothyroidism. Clinical Biochemistry, 37(9), 791-797.
Marteau, T. M., Senior, V., & Sasieni, P. (2001). Women’s understanding of a “normal smear test result”: Experimental questionnaire based study. British Medical Journal, 322, 526-528.
Matthey, S., Kavanagh, D.J., Howie, P., Barnett, B., & Charles, M. (2004).
Prevention of postnatal distress or depression: An evaluation of an intervention at preparation for parenthood classes. Journal of Affective Disorders, 79 (1), 113-126.
Matthey, S., Morgan, M., Healey, L., Barnett, B., Kavanagh, D. J., & Howie, P. (2002). Postpartum issues for expectant mothers and fathers. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 31(4), 428-435.
Michie, S., Lester, K., Pinto, J., & Marteau, T. M. (2005). Communicating risk information in genetic counseling: An observational study. Health Education & Behavior, 32 (5), 589-598.
Mishel, M. (1983). Parents’ perceptions of uncertainty concerning their hospitalized child. Nursing Research, 2(6), 324-330。
Mishel, M. (1988). Uncertainty in illness. IMAGE: The Journal of Nursing Scholarship, 20(4): 225-232.
Padgett, D. K. (2000)‧質化研究與社會工作 (王金勇、蘇英足、陳幸容等譯)‧台北:紅葉。(原著出版於1998)
Patton, M. Q. (1995)‧質的評鑑與研究 (吳芝儀、李奉儒譯)‧台北:桂冠。(原著出版於1990)
Parad, R. B., & Comeau, A. M. (2003). Newborn screening for cystic fibrosis. Pediatric Annals, 32(8), 528-536.
Parsons, E. P., Clarke, A. J., Hood, K., Lycett, E., & Bradley, D.M. (2002). Newborn screening for Duchenne muscular dystrophy: A psychosocial study. Arch Disease Child Fetal Neonate, 86(2), 91-95.
Rennie, J. M., & Roberton, N. R. C. (Eds.). (2000). Textbook of Neonatology. Edinburgh: Churchill Livingstone.
Rita, K. (1998). Expanding newborn screening: Terrific or troubling. The American Journal of Maternal Child Nursing, 23(5), 266-271.
Rothenberg, M. B., & Sillis, E. M. (1968). Iatrogenesis: The PKU anxiety syndrome. Journal of American Academic Child Psychiatry, 7, 689-692.
Santacroce, S. J. (2001). Measuring parental uncertainty during the diagnosis phase of serious illness in a child. Journal of Pediatric Nursing, 16(1), 3-12.
Skirton, H., & Barnes, C. (2005). Obtaining and communicating information about genetics. Nursing Standard, 20, 7, 50-53.
Sorenson, J. R., Levy, H. L., Mangione, T. W., & Sepe, S. J. (1984). Parental response to repeat testing of infants with false-positive results in a newborn screening program. Pediatrics, 73(2), 183-187.
Strauss, A., & Corbin, J. (1997)‧質性研究概論‧(徐宗國譯)‧台北:巨流。(原著出版於1990)
Strauss, A., & Corbin, J. (1998). Basic of qualitative research: Techniques and procedures for developing grounded theory. CA: Sage.
Tluczek, A., Koscik, R. L., Farrell, P. M., & Rock, M. J. (2005). Psychosocial risk associated with newborn screening for cystic fribrosis testing: Parent’s experience while awaiting the sweat-test appointment. Journal of Pediatrics, 115(6), 1692-1703.
Tluczek, A., Mischler, E. H., Farrell, P. M., Fost, N., Peterson, N. M., & Carey, P. (1992). Parents' knowledge of neonatal screening and response to flase-positive cystic fribrosis testing. Journal of Developmentand Behavioral Pediatrics, 13(3), 181-186.
Tymstra, T. (1986). False positive results in screening tests: Experiences of parents of children screened for congenital hypothyroidism. Family Practice, 3(2), 92-96