癲癇患者病恥感對社交回避和苦惱影響的研究進展_Journal of Epilepsy

Authors：

汪亞男 ¹ , 伍芷君 ² ,  陳麗堅 ³ , 俞芳芳 ⁴ , 梁麗華 ⁵ , 何雪梅 ⁶ , 郭見儀 ² , 林碧燕 ¹ , 郭健青 ¹

1. ;
2. ;
3. ;
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5. ;
6. ;

Corresponding?author：

陳麗堅, Email: chenlijian3@163.com

Keywords：

癲癇; 病恥感; 社交回避及苦惱; 綜述

DOI：

10.7507/2096-0247.202210008

Video：

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癲癇是一種常見的神經系統疾病，其患者往往伴隨有焦慮、抑郁、自卑等消極情緒導致了對社交回避和苦惱，產生了較強的病恥感，嚴重影響其身心健康和生活質量。本文聚焦于癲癇患者這一特殊的社會群體，認真梳理了癲癇患者的病恥感產生的根本原因，詳細闡述了病恥感對其生活質量、病情恢復、社會關系等方面的負面影響，分析了病恥感對其社交回避、苦惱的所產生的直接作用；最后，筆者根據前文分析的問題以及原因情況，并結合對癲癇患者的治療實踐，提出了改善癲癇患者社交狀況、降低病恥感的具體干預措施，即幫助患者培養良好的自尊和緩解患者心態，以期為提高癲癇患者這一特殊社會群體的社會認可度和生活幸福度提供些許參考。

Citation： 汪亞男, 伍芷君, 陳麗堅, 俞芳芳, 梁麗華, 何雪梅, 郭見儀, 林碧燕, 郭健青. 癲癇患者病恥感對社交回避和苦惱影響的研究進展. Journal of Epilepsy, 2023, 9(1): 48-52. doi: 10.7507/2096-0247.202210008 Copy

1.	Ngugi AK, Bottomley C, Fegan G, et al. Premature mortality in active convulsive epilepsy in rural Kenya: causes and associated factors. Neurology, 2014, 82(7): 582-589.
2.	洪震. 癲癇流行病學研究. 中國現代神經疾病雜志, 2014, (11): 919-923.
3.	佐桂芳, 孫磊, 劉召英. 護理干預對癲癇患者家屬心理狀態的影響. 齊魯護理雜志, 2012, 18: 118-119.
4.	宋秀峰. 癲癇患兒家長的抑郁水平與其癲癇知識知曉度的相關性分析. 中國實用護理雜志, 2012, 28(15): 2.
5.	張芳, 李曉萍, 曾慶枝, 等. 病恥感量表現狀. 醫學綜述, 2015, 21(2): 286-288.
6.	Stuber J, Meyer I, Link B. Stigma, prejudice, discrimination and health. Soc Sci Med, 2008, 3(67): 351-357.
7.	周開顏, 莫玉梅, 趙海燕, 等. 截癱患者回歸社會的護理干預研究. 河北醫學, 2014, 20(10): 1734-1735.
8.	石錦娟, 邢博. 病恥感心理護理對抑郁癥患者的康復效果. 護理實踐與研究, 2012, 9(3): 118-119.
9.	王婷, 李東升, 宗世琴. 心理干預對武漢市某醫院銀屑病患者病恥感的影響. 醫學與社會, 2015, 28(8): 95-97.
10.	李茂生, 鄔志美. 我國重性精神疾病患者病恥感問題及對策分析. 中國醫學倫理學, 2017, 30(3): 383-387.
11.	Ak PD, Atakli D, Yuksel B, et al. Stigmatization and social impacts of epilepsy in Turkey. Epilepsy Behav, 2015, (50): 50-54.
12.	Kleinman A, Wang WZ, Li SC, et al. The social course of epilepsy: chronic illness as social experience in interior China. Soc Sci Med, 1995, 40(10): 1319-1330.
13.	Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs: Prentice Halll, 1963.
14.	Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med, 2006, 11(3): 277-287.
15.	Yang LH. Application of mental illness stigma theory to Chinese societies: synthesis and new directions. Singapore Med J, 2007, 48(11): 977-985.
16.	張寶山, 俞國良. 污名現象及其心理效應. 心理科學進展, 2007, 15(6): 993-1001.
17.	Scambler G. Epilepsy. London: Tavistock, 1989.
18.	Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol, 2005, 4(3): 171-178.
19.	McCagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning. Epilepsy Res, 2009, 86(1): 1-14.
20.	Muhlbauer S. Experience of stigma by families with mentally ill members. J Am Psychiatr Nurses Assoc, 2002, 8(3): 76-83.
21.	Guo W, Wu J, Wang W, et al. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China. Epilepsy Behav, 2012, 25(2): 282-288.
22.	Angermeyer MC. The stigma of mental illness from the patients’view-an overview. Psychiatr Prax, 2003, 30(7): 358-366.
23.	徐芳芳. 直腸癌永久性腸造口患者病恥感與應對方式、造口適應、生活質量的相關性研究. 合肥: 安徽醫科大學, 碩士學位論文, 2016.
24.	沈曉紅, 姜乾金. 醫學應對方式問卷中文版701例測試報告. 中國行為醫學科學, 2000, 9(1): 18-20.
25.	徐暉, 李栓榮, 李崢. 精神疾病患者歧視感知狀況及應對方式的研究. 中國全科醫學, 2012, 15(28): 3281-3283.
26.	李江嬋, 姚素華, 謝秀東, 等. 認知行為治療對抑郁癥患者病恥感和應對方式的影響研究. 中國全科醫學, 2015, 18(4): 463-465.
27.	Cataldo JK, Jahan TM, Voranan L. Pongquan. Lung cancer stigma, depression, and quality of life among ever and never smokers. European Journal of Oncology Nursing, 2012, 16(3): 264-269.
28.	Wan X, Wang C, Xu D, et al. Disease stigma and its mediating effect on the 50relationship between symptom severity and quality of life among Community-dwelling women with stress urinary incontinence: a study from a Chinese city. J Clin Nurs, 2014, 23(15-16): 2170-2179.
29.	Cinculova A, Prasko J, Kamaradova D, et al. Adherence, self-stigma and discontinuation of pharmacotherapy in patients with anxiety disorderscross-sectional study. Neuro endocrinology letters, 2017, 38(6): 429-426.
30.	朱麗. 恢復期精神分裂癥患者病恥感與服藥依從性的相關性. 皖南醫學院學報, 2014, 33(5): 455-458.
31.	張紅彩. 精神分裂癥患者的病恥感與服藥依從性關系的研究. 北京: 中國協和醫科大學, 碩士學位論文, 2010.
32.	Lee S, Chiu MY, Tsang A, et al. Stigmatizing experience and structural discrimination associated with the treatment of schizophrenia in Hong Kong. Social Science & Medicine, 2006, 62(7): 1685-1696.
33.	李婷. 慢性乙型肝炎病毒感染者病恥感現狀與社會支持及自尊的相關研究. 長春: 吉林大學, 碩士學位論文, 2017.
34.	李榮, 李廣慶, 閆榮, 等. 宮頸癌患者病恥感現狀及其相關影響因素分析. 現代臨床護理, 2016, 15(4): 1-5.
35.	Reese JB, Finan PH, Haythornthwaite JA, et al. Gastrointestinal ostomies and sexual outcomes: a comparison of colorectal cancer patients by ostomy status. Support Care Cancer, 2014, 22(2): 461-468.
36.	Danielsen Ak, Soerensen EE, Burcharth K, et al. Impact of a temporary stoma on patients’everyday lives: feelings of uncertainty while waiting for closure of the stoma. Clin Nurse, 2013, 22(9-10): 1343-1352.
37.	Bifftu BB, Dachew BA, Tiruneh BT. Perceived stigma and associated factors among people with epilepsy at Gondar University Hospital, Northwest Ethiopia: a cross-sectional institution based study. Afr Health Sci, 2015, 15(4): 1211-1219.
38.	Elafros MA, Bowles RP, Atadzhanov M, et al. Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia. Qual Life Res, 2015, 24(6): 1483-1489.
39.	Gzirishvili N, Kasradze S, Lomidze G, et al. Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia. Epilepsy Behav, 2013, 27(2): 315-318.
40.	Aydemir N, Kaya B, Yildiz G, et al. Determinants of felt stigma in epilepsy. Epilepsy Behav, 2016, (58): 76-80.
41.	張咪. 癲癇患者對癲癇知曉程度及精神共患病與生活質量的研究. 西安: 西安醫學院, 碩士學位論文, 2020.
42.	DB, Wright, RH, Busnello, LG, Buratto. Are valence and social avoidance associated with the memory. Acta Psychol, 2012, 141(1): 78-85.
43.	Von C, Brener L, Horwitz R. Implicit and explicit internalized stigma Relationship with risky. Addict Behav, 2017, 76: 305.
44.	齊玲, 王婧, 楊梅, 等. 自我隱瞞與健康關系研究現況及發展趨勢. 中國社會醫學雜志, 2015, 32(1): 45-47.

1. Ngugi AK, Bottomley C, Fegan G, et al. Premature mortality in active convulsive epilepsy in rural Kenya: causes and associated factors. Neurology, 2014, 82(7): 582-589.
2. 洪震. 癲癇流行病學研究. 中國現代神經疾病雜志, 2014, (11): 919-923.
3. 佐桂芳, 孫磊, 劉召英. 護理干預對癲癇患者家屬心理狀態的影響. 齊魯護理雜志, 2012, 18: 118-119.
4. 宋秀峰. 癲癇患兒家長的抑郁水平與其癲癇知識知曉度的相關性分析. 中國實用護理雜志, 2012, 28(15): 2.
5. 張芳, 李曉萍, 曾慶枝, 等. 病恥感量表現狀. 醫學綜述, 2015, 21(2): 286-288.
6. Stuber J, Meyer I, Link B. Stigma, prejudice, discrimination and health. Soc Sci Med, 2008, 3(67): 351-357.
7. 周開顏, 莫玉梅, 趙海燕, 等. 截癱患者回歸社會的護理干預研究. 河北醫學, 2014, 20(10): 1734-1735.
8. 石錦娟, 邢博. 病恥感心理護理對抑郁癥患者的康復效果. 護理實踐與研究, 2012, 9(3): 118-119.
9. 王婷, 李東升, 宗世琴. 心理干預對武漢市某醫院銀屑病患者病恥感的影響. 醫學與社會, 2015, 28(8): 95-97.
10. 李茂生, 鄔志美. 我國重性精神疾病患者病恥感問題及對策分析. 中國醫學倫理學, 2017, 30(3): 383-387.
11. Ak PD, Atakli D, Yuksel B, et al. Stigmatization and social impacts of epilepsy in Turkey. Epilepsy Behav, 2015, (50): 50-54.
12. Kleinman A, Wang WZ, Li SC, et al. The social course of epilepsy: chronic illness as social experience in interior China. Soc Sci Med, 1995, 40(10): 1319-1330.
13. Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs: Prentice Halll, 1963.
14. Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med, 2006, 11(3): 277-287.
15. Yang LH. Application of mental illness stigma theory to Chinese societies: synthesis and new directions. Singapore Med J, 2007, 48(11): 977-985.
16. 張寶山, 俞國良. 污名現象及其心理效應. 心理科學進展, 2007, 15(6): 993-1001.
17. Scambler G. Epilepsy. London: Tavistock, 1989.
18. Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol, 2005, 4(3): 171-178.
19. McCagh J, Fisk JE, Baker GA. Epilepsy, psychosocial and cognitive functioning. Epilepsy Res, 2009, 86(1): 1-14.
20. Muhlbauer S. Experience of stigma by families with mentally ill members. J Am Psychiatr Nurses Assoc, 2002, 8(3): 76-83.
21. Guo W, Wu J, Wang W, et al. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China. Epilepsy Behav, 2012, 25(2): 282-288.
22. Angermeyer MC. The stigma of mental illness from the patients’view-an overview. Psychiatr Prax, 2003, 30(7): 358-366.
23. 徐芳芳. 直腸癌永久性腸造口患者病恥感與應對方式、造口適應、生活質量的相關性研究. 合肥: 安徽醫科大學, 碩士學位論文, 2016.
24. 沈曉紅, 姜乾金. 醫學應對方式問卷中文版701例測試報告. 中國行為醫學科學, 2000, 9(1): 18-20.
25. 徐暉, 李栓榮, 李崢. 精神疾病患者歧視感知狀況及應對方式的研究. 中國全科醫學, 2012, 15(28): 3281-3283.
26. 李江嬋, 姚素華, 謝秀東, 等. 認知行為治療對抑郁癥患者病恥感和應對方式的影響研究. 中國全科醫學, 2015, 18(4): 463-465.
27. Cataldo JK, Jahan TM, Voranan L. Pongquan. Lung cancer stigma, depression, and quality of life among ever and never smokers. European Journal of Oncology Nursing, 2012, 16(3): 264-269.
28. Wan X, Wang C, Xu D, et al. Disease stigma and its mediating effect on the 50relationship between symptom severity and quality of life among Community-dwelling women with stress urinary incontinence: a study from a Chinese city. J Clin Nurs, 2014, 23(15-16): 2170-2179.
29. Cinculova A, Prasko J, Kamaradova D, et al. Adherence, self-stigma and discontinuation of pharmacotherapy in patients with anxiety disorderscross-sectional study. Neuro endocrinology letters, 2017, 38(6): 429-426.
30. 朱麗. 恢復期精神分裂癥患者病恥感與服藥依從性的相關性. 皖南醫學院學報, 2014, 33(5): 455-458.
31. 張紅彩. 精神分裂癥患者的病恥感與服藥依從性關系的研究. 北京: 中國協和醫科大學, 碩士學位論文, 2010.
32. Lee S, Chiu MY, Tsang A, et al. Stigmatizing experience and structural discrimination associated with the treatment of schizophrenia in Hong Kong. Social Science & Medicine, 2006, 62(7): 1685-1696.
33. 李婷. 慢性乙型肝炎病毒感染者病恥感現狀與社會支持及自尊的相關研究. 長春: 吉林大學, 碩士學位論文, 2017.
34. 李榮, 李廣慶, 閆榮, 等. 宮頸癌患者病恥感現狀及其相關影響因素分析. 現代臨床護理, 2016, 15(4): 1-5.
35. Reese JB, Finan PH, Haythornthwaite JA, et al. Gastrointestinal ostomies and sexual outcomes: a comparison of colorectal cancer patients by ostomy status. Support Care Cancer, 2014, 22(2): 461-468.
36. Danielsen Ak, Soerensen EE, Burcharth K, et al. Impact of a temporary stoma on patients’everyday lives: feelings of uncertainty while waiting for closure of the stoma. Clin Nurse, 2013, 22(9-10): 1343-1352.
37. Bifftu BB, Dachew BA, Tiruneh BT. Perceived stigma and associated factors among people with epilepsy at Gondar University Hospital, Northwest Ethiopia: a cross-sectional institution based study. Afr Health Sci, 2015, 15(4): 1211-1219.
38. Elafros MA, Bowles RP, Atadzhanov M, et al. Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia. Qual Life Res, 2015, 24(6): 1483-1489.
39. Gzirishvili N, Kasradze S, Lomidze G, et al. Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia. Epilepsy Behav, 2013, 27(2): 315-318.
40. Aydemir N, Kaya B, Yildiz G, et al. Determinants of felt stigma in epilepsy. Epilepsy Behav, 2016, (58): 76-80.
41. 張咪. 癲癇患者對癲癇知曉程度及精神共患病與生活質量的研究. 西安: 西安醫學院, 碩士學位論文, 2020.
42. DB, Wright, RH, Busnello, LG, Buratto. Are valence and social avoidance associated with the memory. Acta Psychol, 2012, 141(1): 78-85.
43. Von C, Brener L, Horwitz R. Implicit and explicit internalized stigma Relationship with risky. Addict Behav, 2017, 76: 305.
44. 齊玲, 王婧, 楊梅, 等. 自我隱瞞與健康關系研究現況及發展趨勢. 中國社會醫學雜志, 2015, 32(1): 45-47.

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癲癇患者病恥感對社交回避和苦惱影響的研究進展

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