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| DC 欄位 | 值 | 語言 |
|---|---|---|
| dc.contributor.advisor | 謝豐舟,吳英璋 | |
| dc.contributor.author | Ai-Chu Huang | en |
| dc.contributor.author | 黃愛珠 | zh_TW |
| dc.date.accessioned | 2021-06-13T03:15:15Z | - |
| dc.date.available | 2006-08-11 | |
| dc.date.copyright | 2006-08-11 | |
| dc.date.issued | 2006 | |
| dc.date.submitted | 2006-07-31 | |
| dc.identifier.citation | 林耀盛（民79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。
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| dc.identifier.uri | http://tdr.lib.ntu.edu.tw/jspui/handle/123456789/31583 | - |
| dc.description.abstract | 本研究的目的是想要了解Adrenoleukodystrophy（ALD）個案在面對疾病本身的壓力的影響下，對於疾病治療的期望、對於未來的計畫，以及透過哪些形式的想法與實際上的因應行為去面對疾病。希望透過這個探討，可以知道哪種因應方式有效，以之用來協助未來的個案去克服ALD這個疾病。
研究者利用個案研究法，以深度訪談及參與觀察的方式蒐集八個ALD家族中已被診斷，但是還沒發病；或是仍可以清楚自由表達自己意見的ALD患者做為研究樣本，研究內容包括進行個案病歷資料的蒐集，每次個案就診時，實際與個案訪談時蒐集到的個案心理歷程，包括個案日常生活功能、個案對疾病的認知、疾病對個案的日常和學校生活、依賴家庭的程度等因應策略。 研究的結果發現： （1） AMN（adrenomyeloneuropathy）的個案表現出對於未來抱著沒有希望、沒有期待的態度；青春期型、幼兒型、腎上腺病變型、尚未發病型的ALD個案，對於未來會有比較多的期許。家庭關係的緊密與否和個案對於未來是否抱著希望有相關。 （2） 個案的年齡會影響個案的行為改變與調適的模式：年紀越小的個案對於疾 病越不會感覺到害怕，而影響他們最大的是母親與父親的態度。 研究者擬定了一份台灣ALD患者的基本檢查表，當其中有幾項的分數被高度懷疑時，就應該思考個案是否就是一位ALD個案，擬定後續檢查，希望個案不至於被誤診而影響個案的治療時機。骨髓移植前的會談必須包括手術的風險，讓家屬充分了解骨髓移植的手術，以及預後。因爲ALD疾病的變化性非常的大，難以預期，因此個案定期回診追蹤的同時，必須同時安排心理諮商輔導，隨時追蹤個案的心理狀況。 | zh_TW |
| dc.description.abstract | This study aimed at understanding the expectation, planning for future and copying mechanisms of the adrenoleukodystrophy patients.
We hope through the study of those individual patients, we can find the best way to help those ALD patients, not only to fulfill their medical need, but also to relieve their immense 'hopeless' feeling. By using case study method, 8 ALD patients, both affected but asymptomatic yet and symtomatic but still able to express freely, were interviewed and observed. Informed consents were obtained from each subject. We collected all the medical records and underwent interview on each office visit for information including daily life function, perception and cognition about ALD and coping mechanisms within family and school. Our study revealed: （1）AMN( adrenomyeloneuropathy )type demonstrated clear 'hopelessness' for the future while juvenile type, infantile type , adrenal type and asymptomatic cases showed more hope and expectation for the future. The extent of family intimacy seems to contribute to the degree of hopefulness. （2）Patient age is an important determinant of the behaviors and coping mechanisms in ALD patients. The younger they are, the less fear they show. Parental attitudes were found critical in this dimension. This investigator has come up a protocol for the examination of suspected ALD patients. If high enough scores were present from this checklist, ALD should be highly suspected and proper clinical workup is instituted in order not to delay timely clinical intervention for the confirmed ALD patients. Since bone marrow transplantation is a treatment option often considered in the disease course, great efforts should be taken to communicate with ALD patients and their family for their full understanding of the procedures, risks and prognosis of bone marrow transplantation? In conclusion, the clinical course of ALD is highly variable and unrespectable and the psychological impact is immense. Proper psychological care should be offered in each office visit and hospitalization. | en |
| dc.description.provenance | Made available in DSpace on 2021-06-13T03:15:15Z (GMT). No. of bitstreams: 1 ntu-95-P92448010-1.pdf: 1540021 bytes, checksum: 7138b7f26bce3eeb6f001dd92b6178ea (MD5) Previous issue date: 2006 | en |
| dc.description.tableofcontents | 摘要 Ι
英文摘要 II 目錄 第一章 緒論 1 第一節 研究背景與動機 1 第二節 遺傳疾病的特性 2 一、 ALD是一種慢性病、遺傳疾病、以及罕見疾病 2 二、 腎上腺腦白質退化症（ALD）的特徵 4 三、腎上腺腦白質退化症（ALD）治療方法之探討 8 第三節 遺傳疾病的因應行為 11 一、遺傳疾病的壓力與其因應 11 二、因應行為的分類 16 第四節 研究目的與研究架構 17 一、研究目的 17 二、研究架構 19 第二章 研究方法 20 第一節 研究方法 20 第二節 研究設計 21 一、收案期間 21 二、資料收集過程 21 三、研究樣本 22 第三章 研究結果與分析 30 第一節 個案分析 30 一、家族A 30 二、家族B 35 三、家族C 40 四、家族D 47 五、家族E 54 六、家族F 58 七、家族G 63 八、家族H 69 第二節 綜合討論 74 一、對於樣本本身的影響 76 二、因應 77 三、對於生活的調適 80 第四章 結論與建議 84 第一節 研究限制 84 一、研究樣本方面 84 二、研究方法方面 84 三、文獻探討方面 85 第二節 結論與建議 85 一、結論 85 （一）建立一般性之臨床醫療應用 86 （二）與ALD家屬討論醫療資源之協助措施 86 （三）骨髓移植前的術前討論及準備必須包括告知手術的 風險 87 （四）病患回診追蹤必須安排心理諮商輔導 87 二、建議 88 （一）召開ALD國際研討會提升醫療水準並嘉惠患者 88 （二）遺傳諮詢員對於ALD疾病要有新的認知 89 參考書目 90 附錄一：X-ALD發病年齡(Onset ages in X-ALD) 97 附錄二：Loes score 評分法 97 附錄三：ALD臨床檢查項目 98 附錄四：訪談同意書 100 圖表目錄 表2-1：X-ALD臨床表現型的分類(Clinical Phenotypes in X-ALD) 23 表2-2：研究個案各項檢查的基礎檢查值 25 表2-3：研究個案MRI檢查的基礎值 28 表2-4：研究個案的智能（IQ）測驗結果 29 表3-1：研究個案面對疾病時的態度與因應方式 83 | |
| dc.language.iso | zh-TW | |
| dc.subject | 骨髓移植 | zh_TW |
| dc.subject | 疾病因應 | zh_TW |
| dc.subject | 腎上腺腦白質退化症 | zh_TW |
| dc.subject | 遺傳諮詢 | zh_TW |
| dc.subject | 個案研究 | zh_TW |
| dc.subject | bone marrow transplantation | en |
| dc.subject | adrenoleukodystrophy | en |
| dc.subject | genetic counseling | en |
| dc.subject | coping | en |
| dc.subject | case study | en |
| dc.title | 『腎上腺腦白質退化症』的壓力因應 | zh_TW |
| dc.title | Coping with the Pressure of Adrenoleukodystrophy（ALD） | en |
| dc.type | Thesis | |
| dc.date.schoolyear | 94-2 | |
| dc.description.degree | 碩士 | |
| dc.contributor.advisor-orcid | ,吳英璋(wuec@ntu.edu.tw) | |
| dc.contributor.oralexamcommittee | 郭保麟 | |
| dc.subject.keyword | 遺傳諮詢,腎上腺腦白質退化症,骨髓移植,疾病因應,個案研究, | zh_TW |
| dc.subject.keyword | genetic counseling,adrenoleukodystrophy,bone marrow transplantation,coping,case study, | en |
| dc.relation.page | 100 | |
| dc.rights.note | 有償授權 | |
| dc.date.accepted | 2006-08-01 | |
| dc.contributor.author-college | 醫學院 | zh_TW |
| dc.contributor.author-dept | 分子醫學研究所 | zh_TW |
| 顯示於系所單位： | 分子醫學研究所 | |
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