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完整後設資料紀錄
DC 欄位 | 值 | 語言 |
---|---|---|
dc.contributor.advisor | 高碧霞(Bih-Shya Gau) | |
dc.contributor.author | Am-Tzu Lo | en |
dc.contributor.author | 羅安慈 | zh_TW |
dc.date.accessioned | 2021-06-12T18:03:55Z | - |
dc.date.available | 2011-10-07 | |
dc.date.copyright | 2011-10-07 | |
dc.date.issued | 2011 | |
dc.date.submitted | 2011-08-21 | |
dc.identifier.citation | 中文部分
內政部兒童局(2011)•台閩地區發展遲緩兒童早期療育概況表•內政部兒童局入口網站•民100年6月23日取自http://210.241.100.212/CBI_2/internet/main/doc/doc_detail.aspx?uid=111&docid=755 內政部統計部(2011)•100年第十二週內政統計通報(99年發展遲緩兒童早期療育服務概況) •內政部統計處•民100年6月23日取自http://www.moi.gov.tw/stat/news_content.aspx?sn=5068 新北市政府社會局(2011)•新北市合約之發展遲緩兒童評估鑑定並提供早期療育之醫療機構一覽表•台北縣政府社會局入口網站•民100年6月23日取自http://www.sw.ntpc.gov.tw/web/Home?command=display&page=flash 王慧儀、鐘育志(2004)•腦性麻痺兒童家長親職壓力與相關因素探討•The Kaohsiung Journal of Medical Sciences,20(7),34-340。 王舒芸、余漢儀(1997)•奶爸難為:雙親家庭之父職角色初探•婦女與兩性學刊,8,115-149。 王天苗、廖鳳瑞、蔡春美、盧明( 1999) •臺灣地區發展遲緩幼兒人口調查研究•特殊教育研究學刊,17,37-57。 王婉玲(2006)•國中輔導人員角色壓力、輔導自我效能與職業倦怠之關係研究•未發表碩士論文•台北:國立台灣師範大學教育心理與輔導學系研究所。 王冠金、劉千琪、廖珍娟(2010)•兒童神經系統疾病及其護理•於陳月枝總校閱,實用兒科護理學(六版,671-675頁)•臺北:華杏。 史麗珠、林莉華(2004)•無母數分析,基礎生物統計學(253-271頁)•台北:學富。 白淑華(2003)•發展遲緩幼兒入小學轉銜服務之研究:以台中縣一社會福利機構之經驗為例•未發表碩士論文•彰化:國立彰化師範大學特殊教育研究所碩士論文。 白瑞生、黃愛娟(1991)•慢性病兒童對家庭的影響•榮總護理,8(1),32-39。 江家榮 ( 2000 ) •一位發展遲緩幼兒母親的經驗•未發表碩士論文•台北:國立台灣師範大學特殊教育研究所。 任文香(1995)•幼兒母親親職壓力、因應策略與親子關係滿意之關係研究•未發表碩士論文•台北:國立台灣師範大學家政研究所。 吳明隆(2007)•SPSS統計應用學習實務:問卷分析與應用統計•台北:知城圖書。 吳明隆(2009)•SPSS操作與應用:問卷統計分析實務•台北:五南圖書。 吳姵錡 (2010) •腦性麻痺孩童父母親生活品質、親職壓力及其相關因素之研究•未發表碩士論文•高雄: 國立高雄大學運動健康與休閒學系碩士班。 李若琦、洪佩綺(1999)•父親在親職角色扮演上之參與及感受•未發表研究論文•台北:輔仁大學生活應用科學系專題研究論文• 李引玉、黃美智、葉莉莉、駱麗華(1991)•Betty Neuman系統模式簡介•護理雜誌,38(1),33-40。 李麗素(2005)•桃園縣國民中小學人事人員角色壓力與組織承諾之研究•未出版碩士論文•台北:國立台北師範學院教育政策與管理研究所。 何名娟(2004)•有效的處理家庭危機•網路社會學通訊期刊,41•2008年09月23日取自http://mail.nhu.edu.tw/~society/e-j/41/41-33.htm 何華國 ( 2004 ) •特殊兒童親職教育(2版)•台北:五南。 周榮萍、卓妙如(2003)•運用依附概念於發展遲緩兒之親子互動•身心障礙研究雜誌,1(2)。 林琦華、蔡芸芳、陳月枝、黃美涓(2005)•腦性麻痺病童父母親之壓力•台灣醫學,9(5)565-576。 林鋐宇 (2005)•神經發展治療理論運用在腦性麻痺兒童的過去、現在與未來•職能治療學會雜誌,23,26-37。 林生傳(1990)。家庭社經地位。教育社會學(49頁)•台北:巨流。 林珍宇(2004)•發展遲緩兒童幼小轉銜服務相關問題之質化研究-以中部五縣市為例•未出版碩士論文•台北:國立台中師範學院特殊教育與輔助科技研究所碩士論文。 林珮如、李淑貞、鄒志敏(2002)•治療與行動輔具介入特殊教育的服務成效:個案報告•物理治療,6(27),314- 322。 林芳怡(1996) •探討腦性麻痺患孩照顧者感受到的問題及其應變策略•未出版碩士論文•花蓮:慈濟醫學院護理學研究所碩士論文。 胡蓮珍(2000)•初為人父在角色轉變過程的生活經驗•未發表碩士論文•高雄:高雄醫學大學護理研究所碩士論文。 徐畢卿(2002)•智能障礙兒的婦女家庭照顧者-以自閉兒母親為例•護理雜誌,49(2),22-28。 徐綺穗(2000)•父職及其與子女行為關係之研究•教育研究,8,193-204。 涂秀琴(1998)•初為人父第一個月--父親對其角色執行之認知行為。未出版碩士論文•台北:國立臺灣大學護理學研究所碩士論文。 吳明玨(2005)•雙薪家庭幼兒父母親的婚姻滿意、親職壓力與共親職之相關研究• 未出版碩士論文•台北:國立台灣師範大學人類發展與家庭學系。 蔡雅鈴(2006)•不同家庭生命週期親職壓力之研究•未出版碩士論文•嘉義:國立嘉義大學家庭教育研究所。 翁毓秀(2003)•親職壓力量表指導手冊•台北:心理出版社股份有限公司。 張慧美(2004)•台北縣國小一年級身心障礙兒童入學適應服務需求及現況調查•未出版碩士論文•台北:國立台灣師範大學特殊教育在職進修碩士班論文。 張欣如、廖華芳(2007)•痙攣型腦性麻痺兒童之痉孿處理及其療效。Formosan Journal of. Physical Therapy,32(3),138-146。 張翠娥(2003)•融合教育幼小轉銜轉銜論題探討•屏東師院學報,18,307-330。 張芬芬(2005)•質性研究資料分析.台北,雙葉。 陳季員(2008)•學齡前期•載於張媚總校閱,人類發展之概念與實務(130-157頁)•台北:華杏。 陳昭儀(1995)•身心障礙兒童與家庭•師大學報,40,187-212。 陳俞君、朱曉慧(1995)•早期介入計畫對發展遲緩幼兒與母親互動行為之影響•The Kaohsiung Journal of Medical Sciences,11,697-707。 陳進吉(2006)•台北市發展遲緩兒家庭需求及家庭支援調查研究•特殊教育暨創造思考研究,1,57-84。 陳嘉玲(2006)•腦性麻痺的定義及分類。健康世界雜誌,48-49。 陳麗美(2006)•操煩-倫理照顧,從照顧重度障礙的腦性麻痺孩子的生活世界出發•未發表碩士論文•花蓮:國立東華大學族群關係與文化研究所。 陳筱婷、周汎澔(2006)•一位母親與其高危險新生兒依附關係建立過程:母性角色達成-為人母理論之應用•高雄護理雜誌,24(1),38-49。 陳富美、利翠珊(2004)•夫妻的育兒經驗:親職分工與共親職的探討•中華心理衛生學刊,17 (4),1-28。 陳玲婉(2005)•國小學童母親人格特質與親職壓力,幸福感之相關研究•未出版碩士論文•高雄:國立高雄師範大學教育學系。 陳淑芬、李從業(1998)•產後初期父子依戀行為極其相關因素探討•護理研究,6(3),246-257。 郭孟瑜、余季容(2006)•發展遲緩幼兒母親的社會支持與親職壓力之研究•義守大學:人文與社會學報,1(8),317-353。 郭慧貞(2002)•發展遲緩兒童父母對托育服務需求之探討•福利社會,76, 26-30。 曾雅玲、王麗玲、施幼玲(1993)•準爸爸於生產過程的行為反應及護理需求之初步探討•護理研究,1(3),279-289。 曾佳珍 (2009) •發展遲緩兒童主要照顧者之家庭功能與社會支持•未發表碩士論文•彰化:國立彰化師範大學特殊教育學系。 黃世鈺(2002)•學前特殊教育服務與轉銜措施介紹-以高雄市為例•幼教資訊,136,9-11。 黃紫瀅、黃柏銘、姜潤次(2005)•腦性麻痺針灸治療:病例報告•中華推拿與現代康復科學雜誌,1(2),60。 黃有志(1999)•做個現代受歡迎的爸爸•父母親,179,57。 游淑芬(1993)•母親親職壓力與兒童社會行為關係之研究:一般兒童和先天性心臟病兒童的比較•未發表碩士論文•台北:國立台灣師範大學家政教育研究所。 馮燕(2009)•從生態觀點看幼兒托育發展。幼兒教保研究期刊,3(11),1-16。 楊妙芬(2005)•單親兒童非理性信念、父母管教態度、自我概念與人際關 之研究•屏東師院學報,8,71-110。 廖華芳、林麗琴、吳雪玉、吳毓敏、陳錦瑩、李韻邨 (1997)•物理治療對在家教育學童之成效•中華民國物理治療學會雜誌,1(22),35-54。 廖華芳、黃惠聲、李素菁、鄭素芳、周文博(1997)•台北市兩醫學機構腦性麻痺兒童復健相關資料之調查•臺灣醫學,3(1),274-288。 廖華芳(1998)•發遲緩兒童早期療育專業團隊合作模式•中華物療誌,23(2),39-139。 廖華芳 (2005)•嬰幼兒及其家庭早期介入•台北:華騰。 廖華芳 (2006)•小兒物理治療學(二版)•台北:禾風。 劉佩榕(2003)•從生態觀點思考障礙父母之親職壓力•諮商與輔導,211,21-23。 蕭惠伶(2001)•融合教育下身心障礙幼兒社交技能與社會地位之研究•未出版碩士論文•台北:中國文化大學兒童福利研究所碩士論文。 蕭小菁、羅鈞令(2007)•腦性麻痺幼兒母親的日常職能活動與生活品質之探討•職能治療學雜誌,25(1),2-11。 羅國英(2000)•母親教養期望與親職壓力及青少年親子關係知覺的關聯—兼談學業 成就於其中的角色•東吳社會工作學報,6,35-72。 羅淑芬、黃秀梨、劉雪娥、姚開屏(2002)•腦傷病患主要照顧者生活品質及其相關因素之探討•臺灣醫學,5(6),625-636。 羅鈞令、蕭小菁(2006)•腦性麻痺幼兒母親之日常職能活動經驗與調適•職能治療學會雜誌,24,11-24。 羅鳳菊(2007)•先天性代謝異常疾病患童母親之親職壓力與生活品質之探討•未發表碩士論文•台北:國立台灣大學醫學院分子醫學研究所遺傳諮詢組。 英文部分 Abidin, R. R. (1990a).Parenting Stress Index Manual. (3rded).Charlottesville, VA:Pediatric psychology Press. Abidin, R. R. (1990b). Parenting Stress Index short form: Test manual .Charlottesville, VA:Pediatric psychology Press. Abidin, R. R. (1992). The determinants of parenting behavior. Journal of Clinical Child Psychology, 21, 407-412. Anderson, C. S., Linto, J., & Stewart-Wynne, E. G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 26(5), 843-849. Anonymous (2002). Child-care structure? process? poutcome: direct and indirect effects of child-care quality on young children's development. Psychological Science, 13(3), 199-206. Appleton, R. E., & Gupta.R. (2001). Cerebral palsy: Not always what it seems. Archives Disease of Childhood, 85,356-360. Aran, A., Shalev, R. S., Biran. G. &, Gross-Tsur, V. (2007). Parenting style impacts on quality of life in children with cerebral palsy. Journal of Pediatrics, 151(1), 56-60, 60 e51. Bax, M., Goldstein, M., Rosenbaum, P., Leviton, A., Paneth, N., & Dan, B., et al. (2005). Proposed definition and classification of cerebral palsy. Developmental Medicine & Child Neurology, 47(8), 571-576. Belsky, J. (1984). The determinants of parenting: A process model. Child Development, 55, 83-96. Boyle, C. A., Decoufle, P., & Yeargin-Allsopp, M. (1994). Prevalence and health impact of developmental disabilities in US children. Pediatrics, 93 (3), 399-403. Chapman, L. (1991). Searching: expectant father’s experience during labor and birth. Journal of Perinatal and Neonatal Nursing, 4(4). 21-29. Cooley, W. C. (2004). Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics, 114(4), 1106-1113. Camata, M. C. (2002). Parent education in family-centered practice with families of children with special needs: A partnership towards family empowerment. Unpublished master’s thesis.University of Manitoba. Winnipeg, Canada. Dempsey, I., & Dunst, C. J. (2004). Help giving styles and empowerment in families with a young child with a disability. Journal of Intellectual & Development, 20(1), 40-51. Dunst, C. J., (1999).Placing parent education in conceptual and empirical context. Topics in Early Childhood Special Eduaction, 19(3), 141-147. Dellve, L. e. a. (2005). Stree and well-being among parents of children with rare disease: a prospective intervention study. Journal of Advanced Nursing, 53(4), 392-402. Ei-Hazmi, M. A. F. (1997). Early recognition and intervention for prevention of disability and its complications. Eastern Mediterranean HealthJournal, 3, 154-161. Ferrell, B. R. (1998). The family.In Doyle D., Hanks G. W. C., MacDonald N. (Eds).Oxford textbook of palliative medicine. New York: Oxford university press inc.Exceptional Children, CEC, 62(6), 551-63. Friedrich, W.N., Wilturner, L.T.,& Cohen , D.S.(1985). Coping resources and parenting mentally retarded children. American Journal of Mental Deficiency, 90(2), 130-139. Grad, J., & Sainabury, P. (1963). Mental illness and the family.The Lancet,1,544-547. Glenn, S., Cunningham, C., Poole, H., Reeves, D., & Weindling, M. (2009). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health and Development, 35(1), 71- 78. Gray, C. F., Siebert, M., Aisen, M., & Gaebler-Spira, D. (2009). Parent- Professional Partnership. Physical Medicine and Rehabilitation Clinics of North America, 20(3), 577-585. Hollingshead, A. B. (1957). Two factor index of social position. New York: Yale publisher. Henderson, A.D., & Brouse, A. J. (1991). The experience of new father during the first three weeks of life. Journal of Advanced Nursing, 16, 293-298. House, J. S. & Kahn, R. L.(1985). Measures and concepts of social support. In Cohen, S.&Syme, L. (Eds). Social Support and Health.(pp.83-108). Orlando: Academic Press. Krauss, M. W. (2000). Family assessment within early intervention programs.In J. P. Shonkoff & S. Meisels (Eds), Handbook of early cgildhood intervention. 290-308.Cambridge: Cambridge University Press. Mercer, R. T. (1995). Becoming A Mother.New York: Springer Series: Focus onWomen. Michael, T. O. (1989). Diagnosis, treatment, and prevention of cerebral Palsy. Clinical Obstetrics and Gynecology, 51(4), 816-828. Mugno, D., Ruta, L., D'Arrigo, V. G., Mazzone, L., Mugno, D., Ruta, L., et al.(2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health & Quality of Life Outcomes, 5, 22.1-9 Murphy, N. A., Hoff, C., Jorgensen, T., Norlin, C., & Young, P. C. (2006). Costs and complications of hospitalizations for children with cerebral palsy. Pediatr Rehabil.9(1):47-52. Ones, K., Yilmaz, E., Cetinkaya, B., Caglar, N., Ones, K., Yilmaz, E., et al. (2005).Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabilitation & Neural Repair, 19(3), 232-237. Ostberg, M., & Hagekull, B. (2000). A structural modeling approach to understanding parenting stress. Journal of Clinical Child Psychology, 29(4). 615-625. Pellegrino, L. (1997). Cerebral palsy. In M. L. Batshaw (Ed.), Children with disabilities (4th ed., 499-528). Baltimore: Brookes. Pellegrino, L. (2002). Cerebral Palsy. In M.L. Batshaw (Ed.), Children with Disabilities, (5th ed., 443-466). Baltimore, Maryland: Paul H.Brookes. Raina, P., Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., & Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy.Pediatrics, 115(6), e626-636. Rapin, I. (2007). Children with cerebral palsy assess their parents' influence on the quality of their lives: implications for intervention. Journal of Pediatrics, 151(1), 7-9. Reitman, D., Currier, R. O., & Stickle, T. R. (2002). A critical evaluation of the parenting stress index-short form (PSI-SF) in a head start population. Journal of Clinical Child & Adolescent Psychology, 31(3):384-392. Rentinck, I. C., Ketelaar, M., Jongmans, M. J., & Gorter, J. W. (2007). Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child: Care, Health and Development, 33(2), 161-169. Robertson, C. M., Watt, M. J., Yasui, Y., Robertson, C. M. T., Watt, M.-J., & Yasui, Y. (2007). Changes in the prevalence of cerebral palsy for children born very prematurely within a population-based program over 30 years. The Journal of the American Medical Association, 297(24), 2733-2740. Rubin, R. (1984). Maternal identity and the maternal experience. New York, NY: Springer Publishing Company. Rodrigues dos Santos, M. T., Bianccardi, M., Celiberti, P., & Oliveira Guare, R. (2009). Dental caries in cerebral palsied individuals and their caregivers' quality of life. Child: Care, Health and Development, 35(4), 475-481. Shankaran, S. (2008). Prevention, diagnosis, and treatment of cerebral palsy in near-term and term infants. Clinical Obstetrics and Gynecology. 51(4). 829-839. Sheetha, S. (2008).Prevention, Diagnosis, and Treatment of Cerebral Palsy in Near-term and Term Infants.Clinical Obstetrics and Gynecology, 51(4), 829-839. Turnbull, A. P., & Turnbull, H. R. (2001).Familyies, professionals, and exceptionality. New Jersey, NJ: Prentic-Hall, Inc. Thomas, M. O. (2008) Diagnosis, Treatment, and Prevention of Cerebral Palsy. Clinical Obstetrics and Gynecology, 51(4), 816-828. Unsal-Delialioglu, S., Kaya, K., Ozel, S., & Gorgulu, G. (2009). Depression in mothers of children with cerebral palsy and related factors in Turkey: a controlled study. International Journal of Rehabilitation Research, 32(3), 199-204. World Health Organization. (2010). Child and adolescent health and development, September 12, 2010, from the World Wide Web: http://www.who.int/child_adolescent_health/data/en/ | |
dc.identifier.uri | http://tdr.lib.ntu.edu.tw/jspui/handle/123456789/27407 | - |
dc.description.abstract | 背景:醫療品質的提升,卻無法降低新生兒或兒童腦性麻痺的發生率,因腦部損傷的主因,腦性麻痺兒童終其一生的殘疾,對整個家庭而言無疑是一沉重的負擔與壓力,不僅造成家庭的功能改變,對於父母、手足、醫療政策、社會成本,都造成嚴重的影響,近年來國內針對腦性麻痺兒童家庭的研究已逐漸增加,但大多為教育、復健、心理等相關領域的研究,從護理的觀點探討腦性麻痺兒童父母親育兒經驗的研究較缺乏。
目的:本研究從護理的角度切入,藉由腦性麻痺兒童父母親的育兒經驗,了解父母親在照顧腦性麻痺兒童的心路歷程、父母親的親職壓力以及面對問題時的調適與決策過程,以提升腦性麻痺兒童的家庭功能以及照護品質。 方法:本研究採量性與質性研究方法進行兩個層級研究,第一部分為問卷調查法,邀請腦性麻痺兒童的父母親填寫臺灣版親職壓力量表,了解父母親在親職壓力上所遭遇到的實際發生或潛藏的問題。第二部分以詮釋學的方法,運用具半結構式的訪談指引,深入訪談並引導父母親們表達內心的真實感受,經由編輯分析型式歸納出父母親遇到問題的主因及因應方式。 結果:納入10組擁有腦性麻痺兒童的家庭,父親10位、母親10位,共20位訪談對象,計20份有效問卷。量性研究結果:藉由無母數統計分析方法分析親職壓力得分,包含兒童因素分量表、父母因素分量表、總分以及生活壓力四組分數,分兩主題呈現(一)父親與母親的親職壓力與生活壓力:(1)兒童因素分量表-父親比母親有較高的兒童因素壓力,以接納性壓力最高,其次為子女增強父母與情緒心情,母親則是在強求性部分感受到較多的壓力;(2)父母因素分量表-父親在親職角色投入、親職能力、社會孤立上感受壓力高於母親,母親則是以父母健康狀況、夫妻關係壓力大,其次為親職角色限制與憂鬱;(3)親職壓力總分:整體性親職壓力總分在腦性麻痺父母親身上無顯著的差異;(4)生活壓力:生活壓力得分父親低於母親。(二)家庭整體社經地位的高低對親職壓力與生活壓力的影響:(1)兒童因素分量表-社經地位中高的家庭在子女增強父母與適應性所感受的壓力高於高社經地位的家庭,高社經地位的家庭在過動無法專注與接納性較中高社經地位家庭感受到壓力為高;(2)父母因素分量表-中高社經地位的家庭在親職角色限制與夫妻關係所感受到的壓力高於高社經地位的家庭,高社經地位的家庭以親職角色投入、憂鬱、社會孤立以及父母健康狀況感受到較高的壓力;(3)親職壓力總分:整體性親職壓力總分與社經地位的高低無顯著的差異;(4)生活壓力:生活壓力得分與家庭社經地位的高低無顯著差異。 質性訪談結果根據育兒經驗現象,歸納出三個主題:折翼天使的降臨、困境中的學習與成長、大雞晚啼的未來。「折翼天使的降臨」包含六個次主題:(1)父母難以面對的真象(2)自責、難過、無法達成母性功能(3)期待與現實之間的拉距(4)哀傷情緒,封閉自我(5)家人與親友關心的迴避(6)調適自我,重新面對;「困境中的學習與成長」包含四個次主題:(1)徬徨無助的新生活(2)為母則強的韌性(3)醫療資源的獲得與協助(4)夫妻關係衝突與重建;「大雞晚啼的未來」包含七個次主題:(1)家庭支持系統的重建(2)按部就班的復健之路(3)人云亦云的民俗療法(4)不如預期的早療效果(5)國民義務教育體制的失望(6)對孩子未來人生的期望(7)手足的心理影響與責任。 結論:綜合量性分析與質性訪談的研究結果發現,父母親在照顧腦性麻痺兒童的過程中會面臨到四種潛在的議題:(一)腦性麻痺兒童父母心境上的轉換(二)腦性麻痺兒童父母親職壓力與支持系統的建立(三)腦性麻痺兒童父母對早期療育成效的失望(四)腦性麻痺兒童父母面對轉銜教育的擔憂;根據父母親的育兒經驗,醫療從業人員與政府機關若能在早期就將父母們會面對到的現況,針對兒童疾病特性做個別分析與政策擬定,積極教育父母親,相信可以降低整體的家庭壓力與潛在問題的發生,並提升家庭功能。 | zh_TW |
dc.description.abstract | Background: The incidence of cerebral palsy in newborns or young children has been not reduced in spite of the substantial improvement in the quality of medical care. Children with cerebral palsy develop brain damage and result in lifelong disability, which is undoubtedly a heavy burden and pressure for the entire family. The devastating conditions not only change the functions of a family, but also have serious impact on parents, siblings, health policy and social costs. There have been increased studies focusing on the families whose children with cerebral palsy, however, most are restricted to education, rehabilitation and psychological problems. Empirical research untaken from the point of view of nursing care to investigate how parents parenting the children with cerebral palsy still remain in lack.
Objective: This study was undertaken from the point of view of nursing care to obtain an insightful understanding of spiritual experiences, parental stress, as well as decision-making and adjustment processes while those parents facing difficulties in parenting the children with cerebral palsy, which ultimately aimed to improve family functioning and quality of care. Methods: The study consisted of two parts and employed quantitative and qualitative methods. The goal of part 1 was to identify the parenting experiences under pressure for the actual or potential problems by applying a Parental Stress Index (PSI) questionnaire (Chinese version) to the parents of children with cerebral palsy. The second part was a hermeneutic approach using semi-structured interview guidelines. In-depth interviews were provided to guide the parents to express their true feelings. The main causes of problems and coping strategies of parents facing problems were then summarized by editing analysis. Results: Twenty interviewees including 10 fathers and 10 mothers from 10 families of children with cerebral palsy were enrolled in this study. Quantitative evaluation using a nonparametric statistical method was applied for scaling parenting stress, which consisted of child and parent subscales, as well as life stress and total stress scores. The results were presented in two divided topics as the follows: (A) Parenting stress and life stress of fathers and mothers. (1) Subscale of children. Fathers had higher stress scores in accepting stress, followed by promoting emotional stability and balanced mood for children as compared with the mothers. Mothers suffered more assertive pressure than fathers. (2) Subscale of parents. Fathers had higher stress scores in parenting role, parenting capability and social isolation than mothers. Mothers had stress scores in the following orders: health status of parents, marital relationships, limitations of parenting role and depression. (3) Total scores of parenting stress. There was no significant difference in overall parenting stress between fathers and mothers. (4) Life stress. The life stress was lower for fathers in comparison to mothers. (B) The impact of family’s socio-economic status on parenting stress and life stress. (1) Subscale of children. High socio-economic families showed higher stress scores of promoting emotional stability and balanced mood for children than low socio-economic families. High socio-economic families also had higher pressure in admissibility and facing children with poor concentration and hyperactivity than moderate-to-low socio-economic families. (2) Subscale of parents. The scores of limitations of parenting role and marital relationships were higher in moderate-to-low socio-economic families in comparison to high socio-economic families. In contrast, higher scores of parenting role, depression, social isolation and health status of parents indicated higher stress in high socio-economic families. (3) Total score of parenting stress. No significant difference in the association of overall parenting stress with socio-economic status was observed. (4) Life stress. No significant difference in the association of life stress score with socio-economic status was found. The results of hermeneutic approach based on child-rearing experiences were summarized to three themes: “the coming of children born with illness”, “learning and growing in difficulties” and “ the late bloomer ”. There were 6 sub-themes included in “the coming of children born with illness”: (1) a difficult truth to face for parents, (2) self-blame, sadness and unable to implement the functions of a mother, (3) a gap between expectations and reality, (4) conflict resolution and reconstruction of martial relationships, (5) avoidance of concerns from family members and friends, and (6) self-adaptation and facing challenge. The 4 sub-themes of “learning and growing in difficulties” consisted of (1) starting a new life without help, (2) mental toughness of mothers, (3) access to medical resources and assistance, and (4) conflict resolution and reconstruction of martial relationships. Seven sub-themes were included in “the good time in the future”, including (1) reconstruction of family supporting system, (2) step-by-step rehabilitation, (3) complementary alternative therapy, (4) unexpected efficacy of early treatment, (5) disappointment over compulsory education, (6) expectations of the future life for individuals, and (7) the psychological impact and responsibilities of siblings. Conclusions: According to the summarized results of quantitative analysis and hermeneutic approach, there were four potential problems needed to be coped during parenting the children with cerebral palsy. Those problems were (1) mood conversion, (2) parenting stress and establishment of supporting systems, (3) disappointment over the fact of unexpected efficacy of early intervention, and (4) worries about transition education for the parents of children with cerebral palsy. Based on the parental child-rearing experiences, strategies can be made by medical practitioners and government authorities according to the analysis of illness characteristics in children. The functions of families can also be promoted by active education for parents in order to reduce the overall family stress and to lower the risk of potential problems. | en |
dc.description.provenance | Made available in DSpace on 2021-06-12T18:03:55Z (GMT). No. of bitstreams: 1 ntu-100-R96426019-1.pdf: 3892574 bytes, checksum: ee46e1eef39b85e605a4740056c82a7e (MD5) Previous issue date: 2011 | en |
dc.description.tableofcontents | 口試委員審定書 i
致謝辭 ii 中文摘要 iv Abstract vii 目錄 xii 表目錄 xv 圖目錄 xvi 第一章 緒論 1 第一節 研究動機與背景 1 第二節 研究目的 5 第三節 研究問題 6 第四節 重要名詞釋意 6 第二章 文獻查證 9 第一節 腦性麻痺兒童的照護 9 第二節 腦性麻痺兒童的家庭功能 12 第三節 腦性麻痺兒童父母的壓力 14 第四節 轉銜教育 18 第五節 文獻總結 20 第三章研究方法 21 第一節 研究設計 21 第二節 研究對象 23 第三節 研究情境 23 第四節 研究工具 25 第五節 資料蒐集與紀錄 26 第六節 量性研究工具之信效度分析 29 第七節 質性研究嚴謹度分析 29 第八節 研究倫理考量 33 第四章 研究結果 35 第一節 個案與家庭基本屬性分析 35 第二節 折翼天使的降臨 48 第三節 困境中的學習與成長 56 第四節大雞晚啼的未來 61 第五節 研究結果總結 70 第五章 討論 73 第一節 腦性麻痺兒童父母心境上的轉換 73 第二節 腦性麻痺兒童父母親職壓力與支持系統 80 第三節 腦性麻痺兒童父母對早期療育體制的失望 87 第四節 腦性麻痺兒童父母對轉銜教育的擔憂 90 第六章 結論與建議 93 第一節 結論 93 第二節 研究限制 94 第三節 研究者的反思與建議 95 參考文獻 101 中文部分 101 英文部分 107 附錄 113 附錄一 內政統計通報 113 附錄二 親職壓力量表題本 118 附錄三 林生傳家庭社經地位評分表 130 附錄四 訪談指引 132 附錄五 人體試驗委員會同意書 133 附錄六 知情同意書 134 附錄七 親職壓力量表填答紀錄紙 136 附錄八 臺北縣合約之發展遲緩兒童評估鑑定並提供早期療育之醫療機構一覽表 137 | |
dc.language.iso | zh-TW | |
dc.title | 以家庭情境詮釋腦性麻痺兒童父母親之育兒經驗 | zh_TW |
dc.title | Child-rearing Experiences of Parents in the Family Context of Children with Cerebral Palsy | en |
dc.type | Thesis | |
dc.date.schoolyear | 99-2 | |
dc.description.degree | 碩士 | |
dc.contributor.oralexamcommittee | 陳月枝(Yueh-chih Chen),李旺祚(Wang-Tso Lee) | |
dc.subject.keyword | :腦性麻痺兒童,育兒經驗,親職壓力,家庭功能,早期療育,轉銜教育, | zh_TW |
dc.subject.keyword | Children with Cerebral Palsy,Parenting/Child-Rearing Experience,Parenting Stress,Family Function,Early Intervention Program,Transitional Education, | en |
dc.relation.page | 141 | |
dc.rights.note | 有償授權 | |
dc.date.accepted | 2011-08-21 | |
dc.contributor.author-college | 醫學院 | zh_TW |
dc.contributor.author-dept | 護理學研究所 | zh_TW |
顯示於系所單位: | 護理學系所 |
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