修格蘭氏症候群病人之求醫經驗

The Health-Seeking Experience of Patients With Sjögren's Syndrome

10.6224/JN.202310_70(5).06

彭芷瑜(Chih-Yu PENG)；留美萍(Mei-Ping LIU)；李品萱(Pin-Hsuan LEE)；楊政議(Cheng-I YANG)；謝懷棣(Huai-Ti HSIEH)；謝孟蓁(Meng-Chen HSIEH)；李麗紅(Li-Hung LEE)

修格蘭氏症候群 ； 求醫行為 ； 求醫經驗 ； Sjögren's syndrome ； health-seeking behavior ； health-seeking experience

護理雜誌

70卷5期（2023 / 10 / 01）

36 - 43

繁體中文;英文

背景：修格蘭氏症候群（Sjögren's syndrome）因症狀多元，病人常依據症狀求診，求醫過程跨越不同科別，常致多年後才被診斷，而造成病人長期生活上的困擾。目的：本研究旨在探討修格蘭氏症候群病人之求醫經驗。方法：採質性研究方法，以立意取樣方式訪談14位修格蘭氏症候群病人，資料採內容分析法進行分析。結果：可歸納為4個主題：（1）惱人的症狀；（2）確診困難；（3）擔憂藥物副作用；及（4）面對疾病。從疾病初期全身不適之惱人症狀引發參與者到處求醫，於漫長的求醫過程中，醫師未明確告知疾病診斷，致內心相當煎熬，又因疾病因素須終生服藥，擔心藥物副作用傷身，而出現自行調藥行為，透過自己不斷摸索如何與疾病和平共存，心態從否認到釋懷，面對疾病並接受，生病歷程中領悟到要好好照顧自己，學會放下。結論／實務應用：醫療人員倘若能提升對此疾病的認識，讓病人及早轉診到風濕免疫科，及早診斷，以減輕病人到處求醫的痛苦，讓病人能保有正常的工作和生活品質。

Background: The multiple symptoms of Sjögren's syndrome lead patients affected by this disease to seek medical advice from different medical disciplines and specialists. Diagnoses are often made many years after initial onset, resulting in mental and physical exhaustion and misunderstandings. Purpose: This study was designed to explore the health-seeking experiences of patients with Sjögren's syndrome. Methods: Qualitative research methods and purposive sampling were used. Fourteen patients with Sjögren's syndrome were interviewed by the first author, and the collected data were analyzed using content analysis. Results: Four themes were revealed from the data, including: (1) distressing symptoms; (2) difficulty in diagnosis; (3) concerns about drug side effects; and (4) facing the disease. The participants initially sought medical attention when they began experiencing early onset symptoms that caused discomfort or annoyance. Their doctors' failure to provide proper diagnoses during the long health-seeking process caused a great deal of suffering to the participants. Although related medications should be taken for life, the participants reported taking lower-than-prescribed dosages out of fear of side-effects. The participants explored their process of coping with the disease, which began with denial and ended with acceptance. By learning from their health-seeking process, participants realized that they needed to take proper care of themselves, adapt to life with their disease, and control related symptoms. Conclusions/ Implications for Practice: To facilitate the early diagnosis of Sjögren's syndrome, healthcare professionals should improve their awareness of this condition and refer patients with related symptoms to rheumatologists and immunologists. Effective early diagnosis and treatment can help these patients reduce the time and effort involved in unproductive doctor's visits, allowing them to better continue as productive members of society and to maintain a good quality of life.

1. 吳詩韻, S.-Y.,吳靜宜, C.-Y.,陳明翰, M.-H.,曹彥博, Y.-P.,李士元, S.-Y.(2018)。修格蘭氏症候群患者的口腔照護。臨床醫學月刊，82(1)，421-424。
   連結：
2. 周慧雯, H.-W.,張絜閔, C.-M.,林高士, K.-S.,陳光偉, K.-W.(2021)。乾燥症從中醫藥論治病例報告。中醫藥研究論叢，24(1)，123-136。
   連結：
3. 陳國豐, K.-F.,曾偉婷, W.-T.,林虹均, H.-C.,張清貿, C.-M.(2020)。中藥緩解修格蘭氏症合併橋本氏甲狀腺炎之病例報告。中醫藥研究論叢，23(3)，141-150。
   連結：
4. 程紋貞, W.-C.,陳淑齡, S.-L.,蔡麗雲, L.-Y.(2019)。安寧病房護理人員的照護困境與轉化學習。腫瘤護理雜誌，19(2)，23-35。
   連結：
5. 黃偉勝, W.-S.,林虹均, H.-C.,曾偉婷, W.-T.,張清貿, C.-M.(2020)。中藥治療修格蘭氏症候群合併系統性紅斑狼瘡病例報告。中醫藥雜誌，31(2)，124-136。
   連結：
6. 葉雅馨, Y.-H.,林家興, J. C. H.(2006)。台灣民眾憂鬱程度與求助行為的調查研究。中華心理衛生學刊，19(2)，125-148。
   連結：
7. 蕭文棋, W.-C.,陳依伶, Y.-L.,陳民虹, M.-H.(2021)。自體免疫性慢性自發性蕁麻疹案例報告。台灣家庭醫學雜誌，31(3)，234-243。
   連結：
8. 賴建志, C.-C.,孫易暄, Y.-S.,蔡長祐, C.-Y.(2022)。其他風濕疾病合併間質性肺病之治療建議：類風濕關節炎、乾燥症、多發性肌炎及皮肌炎。臨床醫學，89(5)，298-303。
   連結：
9. Lincoln, Y. S.,Guba, E. G.(1985).Naturalistic inquiry.Sage.
10. Mariette, X.,Criswell, L. A.(2018).Primary Sjögren’s syndrome.The New England Journal of Medicine,378(10),931-939.
11. Vivino, F. B.(2017).Sjogren’s syndrome: Clinical aspects.Clinical Immunology,182,48-54.
12. 胡采綸, T.-L.,周玉英, Y.-Y.(2012)。一位女性修格連氏症候群合併淋巴結腫大病患之護理經驗。輔仁醫學期刊，10(3)，157-165。
13. 梁淑媛, S.-Y.,莊宇慧, Y.-H.,吳淑芳, S.-F.(2012)。內容分析技巧在護理質性資料之初步應用。護理雜誌，59(5)，84-90。
14. 郭淑珍, S.-C.,陳怡君, Y.-C.(2017)。求醫行為與社會網絡：以乳癌病患為例。人文社會與醫療學刊，4，67-97。
15. 陳政宏, J.-H.(2016)。乾燥症患者，請注意牙齒保健。健康世界，478，37-39。
16. 陳稼洺, J.-M.(2020)。中醫看乾燥症，中西結合治乾燥、滋潤生津有門道。彰基院訊，37(4)，18-19。
17. 辜美安, M.,呂明錡, M.-C.(2014)。原發性修格蘭氏症候群：認知與早期診斷之重要性。北市醫學雜誌，11(4)，1-8。
18. 葉宏明, H.-M.(2019)。乾燥症與乾燥症相關之淋巴癌。秀傳醫學雜誌，18(2)，179-184。
19. 葉宏明, H.-M.(2019)。原發性乾燥症與罹患淋巴癌的風險—個案報告及文獻回顧。台灣老年醫學暨老年學會雜誌，14(4)，243-250。
20. 魏宇祥, Y.-H.,林玟玓, W.-T.,顏啟華, C.-H.(2020)。周全性老年評估個案報告：一位合併重鬱症及修格蘭氏症候群的66歲老年女性。台灣老年醫學暨老年學會雜誌，15(1)，39-53。