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題名 以壓力模式探討多發性硬化症患者於疾病適應之因應歷程
Exploring the Coping Process of Disease Adjustment in Patients with Multiple Sclerosis by Stress Model作者 呂宜蓁
Lu, Yi-Chen貢獻者 吳治勳
Wu, Chih-Hsun
呂宜蓁
Lu, Yi-Chen關鍵詞 罕病
心理社會照護
多發性硬化症
疾病適應
壓力模式
認知評估
因應歷程
Rare disease
Psychosocial care
Multiple Sclerosis
Disease adjustment
Stress Model
Cognitive appraisal
Coping process日期 2024 上傳時間 5-Aug-2024 14:49:40 (UTC+8) 摘要 研究背景：罕病患者之心理社會照護需求在各國皆逐漸受到重視，但在亞洲國家中相關研究仍較缺乏，於台灣進行這類研究是重要的。因罕見疾病種類之多，且不同罕病之間症狀表現差異大，本研究以單一疾病患者作為研究對象。多發性硬化症在台灣為人數最多的罕病，且疾病症狀表現方式較易對患者本人進行訪談，因此以多發性硬化症患者作為研究對象。但也因不同罕病之間的差異性，本研究中在多發性硬化症患者身上整理分析出之心理照護需求，不一定能完全類推至其他不同罕病的患者。回顧多發性硬化症相關文獻發現探討壓力調適之研究多為歐美研究，且過去相關研究多著重於患者因應行為與適應結果的關聯，除因應行為外，較少研究探討患者面對疾病相關壓力的認知評估，如此可能過度簡化患者的因應歷程。 研究方法：本研究於北部某醫學中心之神經部門診進行收案，收案對象為具多發性硬化症診斷之患者，以半結構訪談和疾病與生活適應自我檢視表進行收案，訪談資料以主題分析以及壓力模式之歷程性分析進行整理。 研究結果：本研究透過主題分析方式並以壓力模式作為高層次主題，歸納出受訪者之壓力源、認知評估、因應方式、調適結果。從中整理出患者於疾病適應常面對的壓力源面向有「不確定性」、「罹患陌生的罕病」、「罹病影響人生規劃」、「治療」、「症狀影響」、「成為罕病病人」、「人際互動」。以及透過歷程性分析呈現患者之因應歷程，發現不同受訪者面對同一壓力源可能產生不同的認知評估，相同之因應行為背後也可能有不同的認知評估，或是因應後的調適結果可能成為下一個壓力源，這些歷程上的不同也會影響調適結果。從上述分析中亦整理出可能影響患者調適情形之風險因子：「在人際互動中的受傷經驗」、「對他人感到歉疚」、「具備資源但不想使用」、「缺乏因應資源」、「缺乏情緒調適方式」。 結論與討論：由本研究結果中可看到多發性硬化症患者之常見壓力源，而多發性硬化症作為探討罕病患者之心理社會照護需求的疾病，具一定代表性但仍需留意不同罕病之間的差異性。亦能從結果中看出認知評估之重要性，若單看壓力源或是單看因應行為，難以完整地了解患者所遇到的適應困難及是否需要更多照護資源，透過歷程性視角較容易了解患者目前的因應方式是否具適應性，以及單討論外在事件或是行為時無法完整呈現的現象，像是社會汙名對患者的影響，或是逃避因應在不同情境條件下之效用。最後，結合本研究中使用的量表以及從前述分析整理出的風險因子，設計出綜合評估的檢核表。患者之心理照護需求時常是隱性的，有時患者本人也可能未察覺，醫療專業人員在臨床上運用此檢核表，應能協助篩選出更多具潛在心理照護需求的患者，並予以轉介心理諮商。
Background: The need for psychosocial care in patients with rare diseases has gradually gained attention worldwide, but related studies in Asian countries remain scarce, making research in Taiwan crucial. Due to the multitude of rare diseases and significant variability in symptom presentations among them, this study focuses on a specific disease. Among numerous rare diseases, multiple sclerosis is the most prevalent in Taiwan and allows for interviews with patients due to its symptom characteristics. However, due to differences between rare diseases, findings on psychological care needs identified from multiple sclerosis patients may not be fully extrapolated to other rare diseases. Reviewing the literature on multiple sclerosis, it is found that research on stress adaptation mostly comes from Western countries. Previous studies primarily focus on the association between patients' coping behaviors and adaptation outcomes, with less emphasis on cognitive appraisal. This approach may oversimplify the coping process for patients. Methods: This study recruited patients diagnosed with multiple sclerosis from the neurology outpatient department of a medical center in northern Taiwan. Semi-structured interviews and the negative emotions due to chronic illness screening test were conducted, and the transcripts were analyzed using thematic analysis and process analysis based on the stress model. Results: With the stress model serving as a higher-order theme, this study identified the stressors, cognitive appraisal, coping strategies, and adaptation outcomes among patients through thematic analysis. The stressors included themes such as "uncertainty," " diagnosed with an unfamiliar rare disease," "impact on life planning," "treatment," "symptom effects," "becoming a rare disease patient," and "interpersonal interactions." Through process analysis, it was observed that different interviewees may have different cognitive appraisals even when facing the same stressor. Before doing similar coping behavior, there may also have different cognitive appraisals, even adaptation outcomes may become new stressors, thereby affecting adaptation outcomes. From this analysis, potential risk factors influencing patients' adaptation were identified, including "experiences of interpersonal distress," "feelings of guilt towards others," "having resources but non-utilization," "lacking coping resources," and "deficiency in emotional regulation strategies." Conclusion and Discussion: The study synthesized common stressors among multiple sclerosis patients. Through understanding these patients, we can observe the psychosocial care needs in the context of rare diseases. However, differences between rare diseases should be noted. The importance of cognitive appraisal can be seen in the study results. Merely focusing on stressors or coping behaviors makes it difficult to comprehensively understand patients' adaptation difficulties and determine if they require more medical resources. Through the process of the stress model, it becomes easier to identify the adaptiveness of patients' current coping strategies. Process analysis provides insights into phenomena that are inadequately represented when only focusing on external events or behaviors, such as the impact of social stigma on patients or the efficacy of avoidance coping in different contexts. Finally, by integrating the scales used in this study and the identified risk factors, a comprehensive assessment checklist was developed. Psychological care needs of patients are often implicit and may go unnoticed by the patients themselves. 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Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany. Orphanet Journal of Rare Diseases, 16, 1-12. 描述 碩士
國立政治大學
心理學系
109752018資料來源 http://thesis.lib.nccu.edu.tw/record/#G0109752018 資料類型 thesis dc.contributor.advisor 吳治勳 zh_TW dc.contributor.advisor Wu, Chih-Hsun en_US dc.contributor.author (Authors) 呂宜蓁 zh_TW dc.contributor.author (Authors) Lu, Yi-Chen en_US dc.creator (作者) 呂宜蓁 zh_TW dc.creator (作者) Lu, Yi-Chen en_US dc.date (日期) 2024 en_US dc.date.accessioned 5-Aug-2024 14:49:40 (UTC+8) - dc.date.available 5-Aug-2024 14:49:40 (UTC+8) - dc.date.issued (上傳時間) 5-Aug-2024 14:49:40 (UTC+8) - dc.identifier (Other Identifiers) G0109752018 en_US dc.identifier.uri (URI) https://nccur.lib.nccu.edu.tw/handle/140.119/152920 - dc.description (描述) 碩士 zh_TW dc.description (描述) 國立政治大學 zh_TW dc.description (描述) 心理學系 zh_TW dc.description (描述) 109752018 zh_TW dc.description.abstract (摘要) 研究背景：罕病患者之心理社會照護需求在各國皆逐漸受到重視，但在亞洲國家中相關研究仍較缺乏，於台灣進行這類研究是重要的。因罕見疾病種類之多，且不同罕病之間症狀表現差異大，本研究以單一疾病患者作為研究對象。多發性硬化症在台灣為人數最多的罕病，且疾病症狀表現方式較易對患者本人進行訪談，因此以多發性硬化症患者作為研究對象。但也因不同罕病之間的差異性，本研究中在多發性硬化症患者身上整理分析出之心理照護需求，不一定能完全類推至其他不同罕病的患者。回顧多發性硬化症相關文獻發現探討壓力調適之研究多為歐美研究，且過去相關研究多著重於患者因應行為與適應結果的關聯，除因應行為外，較少研究探討患者面對疾病相關壓力的認知評估，如此可能過度簡化患者的因應歷程。 研究方法：本研究於北部某醫學中心之神經部門診進行收案，收案對象為具多發性硬化症診斷之患者，以半結構訪談和疾病與生活適應自我檢視表進行收案，訪談資料以主題分析以及壓力模式之歷程性分析進行整理。 研究結果：本研究透過主題分析方式並以壓力模式作為高層次主題，歸納出受訪者之壓力源、認知評估、因應方式、調適結果。從中整理出患者於疾病適應常面對的壓力源面向有「不確定性」、「罹患陌生的罕病」、「罹病影響人生規劃」、「治療」、「症狀影響」、「成為罕病病人」、「人際互動」。以及透過歷程性分析呈現患者之因應歷程，發現不同受訪者面對同一壓力源可能產生不同的認知評估，相同之因應行為背後也可能有不同的認知評估，或是因應後的調適結果可能成為下一個壓力源，這些歷程上的不同也會影響調適結果。從上述分析中亦整理出可能影響患者調適情形之風險因子：「在人際互動中的受傷經驗」、「對他人感到歉疚」、「具備資源但不想使用」、「缺乏因應資源」、「缺乏情緒調適方式」。 結論與討論：由本研究結果中可看到多發性硬化症患者之常見壓力源，而多發性硬化症作為探討罕病患者之心理社會照護需求的疾病，具一定代表性但仍需留意不同罕病之間的差異性。亦能從結果中看出認知評估之重要性，若單看壓力源或是單看因應行為，難以完整地了解患者所遇到的適應困難及是否需要更多照護資源，透過歷程性視角較容易了解患者目前的因應方式是否具適應性，以及單討論外在事件或是行為時無法完整呈現的現象，像是社會汙名對患者的影響，或是逃避因應在不同情境條件下之效用。最後，結合本研究中使用的量表以及從前述分析整理出的風險因子，設計出綜合評估的檢核表。患者之心理照護需求時常是隱性的，有時患者本人也可能未察覺，醫療專業人員在臨床上運用此檢核表，應能協助篩選出更多具潛在心理照護需求的患者，並予以轉介心理諮商。 zh_TW dc.description.abstract (摘要) Background: The need for psychosocial care in patients with rare diseases has gradually gained attention worldwide, but related studies in Asian countries remain scarce, making research in Taiwan crucial. Due to the multitude of rare diseases and significant variability in symptom presentations among them, this study focuses on a specific disease. Among numerous rare diseases, multiple sclerosis is the most prevalent in Taiwan and allows for interviews with patients due to its symptom characteristics. However, due to differences between rare diseases, findings on psychological care needs identified from multiple sclerosis patients may not be fully extrapolated to other rare diseases. Reviewing the literature on multiple sclerosis, it is found that research on stress adaptation mostly comes from Western countries. Previous studies primarily focus on the association between patients' coping behaviors and adaptation outcomes, with less emphasis on cognitive appraisal. This approach may oversimplify the coping process for patients. Methods: This study recruited patients diagnosed with multiple sclerosis from the neurology outpatient department of a medical center in northern Taiwan. Semi-structured interviews and the negative emotions due to chronic illness screening test were conducted, and the transcripts were analyzed using thematic analysis and process analysis based on the stress model. Results: With the stress model serving as a higher-order theme, this study identified the stressors, cognitive appraisal, coping strategies, and adaptation outcomes among patients through thematic analysis. The stressors included themes such as "uncertainty," " diagnosed with an unfamiliar rare disease," "impact on life planning," "treatment," "symptom effects," "becoming a rare disease patient," and "interpersonal interactions." Through process analysis, it was observed that different interviewees may have different cognitive appraisals even when facing the same stressor. Before doing similar coping behavior, there may also have different cognitive appraisals, even adaptation outcomes may become new stressors, thereby affecting adaptation outcomes. From this analysis, potential risk factors influencing patients' adaptation were identified, including "experiences of interpersonal distress," "feelings of guilt towards others," "having resources but non-utilization," "lacking coping resources," and "deficiency in emotional regulation strategies." Conclusion and Discussion: The study synthesized common stressors among multiple sclerosis patients. Through understanding these patients, we can observe the psychosocial care needs in the context of rare diseases. However, differences between rare diseases should be noted. The importance of cognitive appraisal can be seen in the study results. Merely focusing on stressors or coping behaviors makes it difficult to comprehensively understand patients' adaptation difficulties and determine if they require more medical resources. Through the process of the stress model, it becomes easier to identify the adaptiveness of patients' current coping strategies. Process analysis provides insights into phenomena that are inadequately represented when only focusing on external events or behaviors, such as the impact of social stigma on patients or the efficacy of avoidance coping in different contexts. Finally, by integrating the scales used in this study and the identified risk factors, a comprehensive assessment checklist was developed. Psychological care needs of patients are often implicit and may go unnoticed by the patients themselves. The application of this checklist can help identify more patients with potential psychological care needs and refer them to psychological counseling services. en_US dc.description.tableofcontents 第一章 研究背景 1 第二章 文獻回顧 6 第一節 多發性硬化症概述 6 第二節 多發性硬化症患者之疾病適應 9 第三節 多發性硬化症患者與壓力 11 第四節 研究目的 18 第三章 研究方法 19 第一節 研究參與者 19 第二節 研究場域與流程 20 第三節 研究工具 21 第四節 分析方法 26 第四章 研究結果 31 第一節 資料描述 31 第二節 訪談資料分析範例 34 第三節 多發性硬化症患者之疾病適應 42 第四節 多發性硬化症患者之疾病適應歷程 109 第五節 疾病適應歷程中之風險因子 133 第五章 結論與討論 137 第一節 多發性硬化症患者之疾病適應困難 137 第二節 從歷程性視角所見之疾病適應 143 第三節 研究貢獻與臨床建議 150 第四節 研究限制與未來方向 153 參考文獻 155 附錄 164 附錄一、疾病與生活適應自我檢視表 164 zh_TW dc.format.extent 2291773 bytes - dc.format.mimetype application/pdf - dc.source.uri (資料來源) http://thesis.lib.nccu.edu.tw/record/#G0109752018 en_US dc.subject (關鍵詞) 罕病 zh_TW dc.subject (關鍵詞) 心理社會照護 zh_TW dc.subject (關鍵詞) 多發性硬化症 zh_TW dc.subject (關鍵詞) 疾病適應 zh_TW dc.subject (關鍵詞) 壓力模式 zh_TW dc.subject (關鍵詞) 認知評估 zh_TW dc.subject (關鍵詞) 因應歷程 zh_TW dc.subject (關鍵詞) Rare disease en_US dc.subject (關鍵詞) Psychosocial care en_US dc.subject (關鍵詞) Multiple Sclerosis en_US dc.subject (關鍵詞) Disease adjustment en_US dc.subject (關鍵詞) Stress Model en_US dc.subject (關鍵詞) Cognitive appraisal en_US dc.subject (關鍵詞) Coping process en_US dc.title (題名) 以壓力模式探討多發性硬化症患者於疾病適應之因應歷程 zh_TW dc.title (題名) Exploring the Coping Process of Disease Adjustment in Patients with Multiple Sclerosis by Stress Model en_US dc.type (資料類型) thesis en_US dc.relation.reference (參考文獻) 罕見疾病防治及藥物法（條文修正日期：民國 104 年 01 月 14 日）。取自 https://law.moj.gov.tw/LawClass/LawAll.aspx?pcode=L0030003 周彥伶（2021）。罕病兒童心理諮商之工作經驗探究[未出版碩士論文]。國立 彰化師範大學 楊智超. 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