軟骨發育不全症患者及其母親疾病關注及情緒調適

Hsin-Yi Chang; 張新怡

Please use this identifier to cite or link to this item: http://tdr.lib.ntu.edu.tw/jspui/handle/123456789/26203

Full metadata record

???org.dspace.app.webui.jsptag.ItemTag.dcfield???	Value	Language
dc.contributor.advisor	黃璉華(Lian-Hua Huang)
dc.contributor.author	Hsin-Yi Chang	en
dc.contributor.author	張新怡	zh_TW
dc.date.accessioned	2021-06-08T07:02:47Z	-
dc.date.copyright	2009-02-17
dc.date.issued	2009
dc.date.submitted	2009-01-23
dc.identifier.citation	中文部分︰行政院衛生署國民健康局. 健康九九衛生教育網。Available at: http://health99.doh.gov.tw/PreciousLifeZone/PreciousLife_detail.aspx?topicno=102&CN， Accessed 4/20/2008. 行政院衛生署. 通報前10項罕見疾病。Available at: http://info.gio.gov.tw/public/Attachment/83311717276.doc， Accessed 5/6/2008. 林耀盛（1990年5月）慢性病門診病人的疾病控制信念與疾病因應方式。國立台灣大學心理研究所碩士論文。武光東（1984年11月）遺傳疾病簡介──兼談新生兒篩檢的意義。科學月刊，179 期。財團法人罕見疾病基金會. 罕見疾病現況。Available at: http://www.tfrd.org.tw/rare/index.php?kind_id=4， Accessed 4/20/2008. 耿筠、黃俊英（1996）「社會行銷之起源及發展」，文大商管學報，台北：中國文化大學商學院出版，1 卷1 期，1-21 頁。陳清惠（2003年6月）家有安琪兒---發展遲緩兒童父母親心理歷程之研究。南華大學生死學研究所碩士論文。許文耀（2000年9月）九二一地震災區學生的因應型態與心理症狀的關係。中華心理衛生學刊，Vol 13：（3）35-59。黃彥穆（2000年12月）資料蒐集方法與分析─質的分析技術探討。世新大學資訊管理研究所碩士論文。潘人榮。人體胚胎學。彭賽蓮：骨骼系統。台北：藝軒圖書出版社；1995： 349-66。鄭逸如（1989年6月）慢性B 型肝炎患著的認知級情緒與病情發展的關係。國立台灣大學心理研究所碩士論文。鍾倫納，應用社會科學研究法，台灣商務印書館，台北，1996 英文部分: Ain MC, Shirley ED, Pirouzmanesh A, Skolasky RL, Leet AI. Genu varum in achondroplasia. J Pediatr Orthop 2006;26:375-9. Bailey JA. Orthopaedic aspects of achondroplasia. J Bone Joint Surg 1970; 52:1285-301 38 Beals R. K. & Stanley G (2005). Surgical correction of bowlegs in achondroplasia. Journal of Pediatric Orthopaedics B 2005, 14:245–249 Beighton P, Bathfield CA. Gibbal Achondroplasia. J Bone Joint Surg 1981;63B:328-9. Brinkmann G, Schlitt H, Zorowka P, Spranger J. Cognitive skills in achondroplasia. Am J Med Genet 1993;47:800-4. Collins WO, Choi SS. Otolaryngologic manifestations of achondroplasia. Arch Otolaryngol Head Neck Surg 2007;133:237-44. Gollust SE, Thompson RE, Gooding HC, Biesecker BB. Living with achondroplasia in an average-sized world: An assessment of quality of life. Am J Med Genet A 2003;120:447-58. Gordon N. The neurological complications of achondroplasia. Brain Dev 2000;22:3-7 Hecht JT, Francomano CA, Horton WA, Annegers JF. Mortality in achondroplasia. Am J Hum Genet 1987;41:454-64. Hecht JT, Hood OJ, Schwartz RJ, Hennessey JC, Bernhardt BA, Horton WA. Obesity in achondroplasia. Am J Med Genet 1988;31:597-602. Ho NC, Guarnieri M, Brant LJ, Park SS, Sun B, North M et al. Living with achondroplasia: quality of life evaluation following cervico-medullary decompression. Am J Med Genet A 2004;131:163-7. Hoover-Fong JE, McGready J, Schulze KJ, Barnes H, Scott CI. Weight for age charts for children with achondroplasia. Am J Med Genet A 2007;143A:2227-35. Horton WA, Hall JG, Hecht JT. Achondroplasia. Lancet 2007;370:162-72. Horton WA, Rotter JI, Rimoin DL, Scott CI, Hall JG. Standard growth curves for achondroplasia. J Pediatr 1978;93:435-8. Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI. Medical complications of achondroplasia: a multicentre patient review. J Med Genet 1998;35:705-12. Hunter AG, Hecht JT, Scott CI. Standard weight for height curves in achondroplasia. Am J Med Genet 1996;62:255-61. Hunter AGW, Reid CS, Pauli RM, Scott CI. Standard curves of chest circumference in achondroplasia and the relationship of chest circumference to respiratory problems. Am J Med Genet 1996;62:91-7. Inan M, thacker M, Church C, Miller F, Mackenzie WG, Conklin D. Dynamic lower extremity alignment in children with achondroplasia. J Pediatr Orthop 2006;26:526-9. Kahanovitz N, Rimoin DL, Sillence DO. The clinical spectrum of lumbar spine disease in achondroplasia. Spine 1982;7:137-40. 39 Keong ST, Song HR, Keny SM, Telang SS, Suh SW, Hong SJ. MRI study of the lumbar spine in achondroplasia. A morphometric analysis for the evaluation of stenosis of the canal. J Bone Joint Surg 2006;88:1192-6. Lazarus. R. S. & Folkman S. (1984). Stress, Appraisal, and Coping. New York: Spriger Publishing Company. Mahomed NN, Spellmann M, Goldberg MJ. Functional health status of adults with achondroplasia. Am J Med Genet 1998;78:30-5. Martinez-Frias ML, Cereijo A, Bermejo E, Lopez M, Sanchez M, Gonzalo C. Epidemiological aspects of Mendelian syndromes in a Spanish population Sample: Ⅰ. Autosomal dominant malformation syndromes. Am J Med Genet 1991;38:622-5. Owen OE, Smalley KJ, D'Alessio DA, Mozzoli MA, Knerr AN, Kendrick ZV et al. Resting metabolic rate and body composition of achondroplastic dwarfs. Medicine 1990;69:56-67. Pauli RM. Achondroplasia. In: Cassidy SB, Allanson JE, editors. Management of genetic disorders 2nd edition Hoboken, NJ: Wiley-Liss, Inc.; 2005. p 13-30. Pauli, R.M. (2007). The Natural Histories of Bone Dysplasia in Adults—Vignettes, Fables and Just-So Stories. Journal of Medical Genetic Part C (Seminars in Medical Genetics) 145C:309–321 Pauli RM, Breed A, Horton VK, Glinski LP, Reiser CA. Prevention of fixed, angular kyphosis in achondroplasia. J Pediatr Orthop 1997;17:726-33. Pauli RM, Scott CI, Wassman ER, Gilbert EF, Leavitt LA, Hoeve JV et al. Apnea and sudden unexpected death in infants with achondroplasia. J Pediatr 1984;104:342-8. Ponseti IV. Skeletal growth in achondroplasia. J Bone Joint Surg 1970;52A:701-16. Pyeritz RE, Sack GH, Udvarhelyi GB. Thoracolumbosacral laminectomy in achondroplasia: long term results in 22 patients. Am J Med Genet 1987;28:433-44. Reid CS, Pyeritz RE, Kopits SE, Maria BL, Wang H, Mcpherson RW et al. Cervicomedullary compression in young patients with achondroplasia: Value of comprehensive neurologic and respiratory evaluation. J Pediatr 1987;110:552-30. Roizen N, Ekwo E, Gosselink C. Comparison of education and occupation of adults with achondroplasia with same-sex sibs. Am J Med Genet 1990;35:275-60. Rousseau F, Bonaventure J, Legeal-Mallet L, Pelet A, Rozet J-M, Maroteaux P et al. Mutations in the gene encoding fibroblast growth factor receptor-3 in achondroplasia. Nature 1994;371:252-4. Stanley G, McLoughlin S, Beals RK. Observations on the cause of bowleg in achondroplasia. J Pediatr Orthop 2002;22:112-6. 40 Schkrohowsky JG, Hoernschemeyer DG, Carson BS, Ain MC. Early Presentation of Spinal Stenosis in Achondroplasia. J Pediatr Orthop 2007;27:119-22. Stokes D, Pyeritz R, Wise R, Fairclough D, Murphy E. Spirometry and chest wall dimensions in achondroplasia. Chest 1988;93:364-9. Strokes DC, Wohl MEB, Wise RA, Pyeritz RE, Fairclough DL. The lungs and airways in achondroplasia. Do little people have little lungs? Chest 1990;98:145-52. Strokes DC, Phillips JA, Leonard CO, Dorst JP, Kopits SE, Trojak JE et al. Respiratory complication of achondroplasia. J Pediatr 1983;102:534-41. Takken T, van Bergen MWM, Sakkers RJB, Helders PJM, Engelbert RHH. Cardiopulmonary exercise capacity, muscle strength, and physical activity in children and adolescents with achondroplasia. J Pediatr 2007;150:26-30. Tim Takken, et al. (2007). Cardiopulmonary Exercise Capacity, Muscle Strength, and Physical Activity in Children and Adolescents with Achondroplasia. The Journal of Pediatrics, January 150:26-30 Todorov AB, C. I. Scott J, Warren AE, Leeper JD. Developmental screening tests in achondroplasia children. Am J Med Genet 1981;9:19-23. Trotter TL, Hall; JG, Genetics AAoPCo. Health supervision for children with achondroplasia. Pediatrics 2005;116:771-83. Wynn J, King TM, Gambello MJ, Waller DK, Hecht JT. Mortality in achondroplasia study: A 42-year follow-up Am J Med Genet A 2007;143A:2502-11.
dc.identifier.uri	http://tdr.lib.ntu.edu.tw/jspui/handle/123456789/26203	-
dc.description.abstract	本研究的目的是探討軟骨發育不全症者及其母親對疾病在照護過程中所關注的內容與調適行為。本研究採用敘述研究法，分別與7位軟骨發育不全症患者及6位患者母親，透過深度訪談，分析個案對於軟骨發育不全症的想法、經驗與意見，整理出患者及患者母親的疾病關注與調適行為。研究結果發現︰對於日常生活與照顧過程中，在面對併發症及骨骼異常的病痛，對於患者或是其母親，都是在身體與心理上的極大挑戰。隨著患者的成長，體型意識的問題，造成在日常生活方面的種種不便，除了要學習摸索，來發展出針對種種狀況的應對模式以外，同時也要面對與適應外界種種異樣的眼光。這種種過程中的壓力因應與心理調適，都需要父母採用正面的教養態度，協助患者在成長過程中，慢慢建立正向、樂觀的態度。並適時的善用社會資源，或是透過宗教信仰，都有助於患者建立正確的態度以及自信心，來迎接未來的就業擁有婚姻生活，以及生育正常下一代。在訪談同時也發現，不論是患者或是其母親，對於來自年紀較長的其他患者或是其他患者的母親的經驗分享，不論是在於成長的歷程、生活的應對模式、就學安排、就業的經驗，都非常有興趣了解。對於患者與其母親，這些資訊以及勉勵的話，具有很好的激勵效果。本研究結果可供遺傳諮詢醫護人員參考，以協助遺傳醫護人員對軟骨發育不全症的認識與瞭解，可以在適時提供患者及其母親正確的醫療知識與支持。	zh_TW
dc.description.provenance	Made available in DSpace on 2021-06-08T07:02:47Z (GMT). No. of bitstreams: 1 ntu-98-P95448014-1.pdf: 734449 bytes, checksum: 920a215d73bdac4b5cef37b7f5a59c0c (MD5) Previous issue date: 2009	en
dc.description.tableofcontents	口試委員會審定書...........................................................................................................i 中文摘要..........................................................................................................................ii 英文摘要.........................................................................................................................iv 第一章緒論.....................................................................................................................1 第一節研究動機.................................................................................................1 第二節研究目的.................................................................................................2 第三節研究問題.................................................................................................3 第四節名詞探討.................................................................................................3 第二章文獻探討.............................................................................................................4 第一節軟骨發育不全症.....................................................................................4 第二節關注內容.................................................................................................4 第三節壓力來源.................................................................................................5 第四節調適行為.................................................................................................6 第三章研究方法...........................................................................................................10 第一節研究設計...............................................................................................10 第二節研究對象...............................................................................................10 第三節研究工具...............................................................................................10 第四節資料收集過程.......................................................................................11 第四章研究結果與分析...............................................................................................13 第一節研究問題與研究結果...........................................................................13 第二節综合討論...............................................................................................31 第五章結論與研究限制...............................................................................................34 第一節結論.......................................................................................................34 第二節研究限制...............................................................................................35 參考資料.........................................................................................................................37 附錄................................................................................................................................41
dc.language.iso	zh-TW
dc.subject	調適行為	zh_TW
dc.subject	軟骨發育不全症	zh_TW
dc.subject	疾病關注	zh_TW
dc.subject	Achondroplasia	en
dc.subject	Coping Behaviors	en
dc.subject	Concerns	en
dc.title	軟骨發育不全症患者及其母親疾病關注及情緒調適	zh_TW
dc.title	The Concerns and Coping Behaviors of Achondroplasia Patients and Their Mothers	en
dc.type	Thesis
dc.date.schoolyear	97-1
dc.description.degree	碩士
dc.contributor.oralexamcommittee	林炫沛(Shuan-Pei Lin),高碧霞(Bih-Shya Gau)
dc.subject.keyword	軟骨發育不全症,疾病關注,調適行為,	zh_TW
dc.subject.keyword	Achondroplasia,Concerns,Coping Behaviors,	en
dc.relation.page	57
dc.rights.note	未授權
dc.date.accepted	2009-01-23
dc.contributor.author-college	醫學院	zh_TW
dc.contributor.author-dept	分子醫學研究所	zh_TW
Appears in Collections:	分子醫學研究所

Files in This Item:

File	Size	Format
ntu-98-1.pdf Restricted Access	717.24 kB	Adobe PDF

Show simple item record

DSpace JSPUI

DSpace preserves and enables easy and open access to all types of digital content including text, images, moving images, mpegs and data sets