癫痫患者病耻感对社交回避和苦恼影响的研究进展_Journal of Epilepsy

Authors：

汪亚男 ¹ , 伍芷君 ² ,  陈丽坚 ³ , 俞芳芳 ⁴ , 梁丽华 ⁵ , 何雪梅 ⁶ , 郭见仪 ² , 林碧燕 ¹ , 郭健青 ¹

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Corresponding author：

陈丽坚, Email: chenlijian3@163.com

Keywords：

癫痫; 病耻感; 社交回避及苦恼; 综述

DOI：

10.7507/2096-0247.202210008

Video：

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癫痫是一种常见的神经系统疾病，其患者往往伴随有焦虑、抑郁、自卑等消极情绪导致了对社交回避和苦恼，产生了较强的病耻感，严重影响其身心健康和生活质量。本文聚焦于癫痫患者这一特殊的社会群体，认真梳理了癫痫患者的病耻感产生的根本原因，详细阐述了病耻感对其生活质量、病情恢复、社会关系等方面的负面影响，分析了病耻感对其社交回避、苦恼的所产生的直接作用；最后，笔者根据前文分析的问题以及原因情况，并结合对癫痫患者的治疗实践，提出了改善癫痫患者社交状况、降低病耻感的具体干预措施，即帮助患者培养良好的自尊和缓解患者心态，以期为提高癫痫患者这一特殊社会群体的社会认可度和生活幸福度提供些许参考。

Citation： 汪亚男, 伍芷君, 陈丽坚, 俞芳芳, 梁丽华, 何雪梅, 郭见仪, 林碧燕, 郭健青. 癫痫患者病耻感对社交回避和苦恼影响的研究进展. 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. 癫癇流行病学研究. 中国现代神经疾病杂志, 2014, (11): 919-923.
3.	佐桂芳, 孙磊, 刘召英. 护理干预对癫痫患者家属心理状态的影响. 齐鲁护理杂志, 2012, 18: 118-119.
4.	宋秀峰. 癫痫患儿家长的抑郁水平与其癫痫知识知晓度的相关性分析. 中国实用护理杂志, 2012, 28(15): 2.
5.	张芳, 李晓萍, 曾庆枝, 等. 病耻感量表现状. 医学综述, 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.	周开颜, 莫玉梅, 赵海燕, 等. 截瘫患者回归社会的护理干预研究. 河北医学, 2014, 20(10): 1734-1735.
8.	石锦娟, 邢博. 病耻感心理护理对抑郁症患者的康复效果. 护理实践与研究, 2012, 9(3): 118-119.
9.	王婷, 李东升, 宗世琴. 心理干预对武汉市某医院银屑病患者病耻感的影响. 医学与社会, 2015, 28(8): 95-97.
10.	李茂生, 邬志美. 我国重性精神疾病患者病耻感问题及对策分析. 中国医学伦理学, 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.	张宝山, 俞国良. 污名现象及其心理效应. 心理科学进展, 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. 直肠癌永久性肠造口患者病耻感与应对方式、造口适应、生活质量的相关性研究. 合肥: 安徽医科大学, 硕士学位论文, 2016.
24.	沈晓红, 姜乾金. 医学应对方式问卷中文版701例测试报告. 中国行为医学科学, 2000, 9(1): 18-20.
25.	徐晖, 李栓荣, 李峥. 精神疾病患者歧视感知状况及应对方式的研究. 中国全科医学, 2012, 15(28): 3281-3283.
26.	李江婵, 姚素华, 谢秀东, 等. 认知行为治疗对抑郁症患者病耻感和应对方式的影响研究. 中国全科医学, 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.	朱丽. 恢复期精神分裂症患者病耻感与服药依从性的相关性. 皖南医学院学报, 2014, 33(5): 455-458.
31.	张红彩. 精神分裂症患者的病耻感与服药依从性关系的研究. 北京: 中国协和医科大学, 硕士学位论文, 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耻感现状与社会支持及自尊的相关研究. 长春: 吉林大学, 硕士学位论文, 2017.
34.	李荣, 李广庆, 闫荣, 等. 宫颈癌患者病耻感现状及其相关影响因素分析. 现代临床护理, 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.	张咪. 癫痫患者对癫痫知晓程度及精神共患病与生活质量的研究. 西安: 西安医学院, 硕士学位论文, 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.	齐玲, 王婧, 杨梅, 等. 自我隐瞒与健康关系研究现况及发展趋势. 中国社会医学杂志, 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. 癫癇流行病学研究. 中国现代神经疾病杂志, 2014, (11): 919-923.
3. 佐桂芳, 孙磊, 刘召英. 护理干预对癫痫患者家属心理状态的影响. 齐鲁护理杂志, 2012, 18: 118-119.
4. 宋秀峰. 癫痫患儿家长的抑郁水平与其癫痫知识知晓度的相关性分析. 中国实用护理杂志, 2012, 28(15): 2.
5. 张芳, 李晓萍, 曾庆枝, 等. 病耻感量表现状. 医学综述, 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. 周开颜, 莫玉梅, 赵海燕, 等. 截瘫患者回归社会的护理干预研究. 河北医学, 2014, 20(10): 1734-1735.
8. 石锦娟, 邢博. 病耻感心理护理对抑郁症患者的康复效果. 护理实践与研究, 2012, 9(3): 118-119.
9. 王婷, 李东升, 宗世琴. 心理干预对武汉市某医院银屑病患者病耻感的影响. 医学与社会, 2015, 28(8): 95-97.
10. 李茂生, 邬志美. 我国重性精神疾病患者病耻感问题及对策分析. 中国医学伦理学, 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. 张宝山, 俞国良. 污名现象及其心理效应. 心理科学进展, 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. 直肠癌永久性肠造口患者病耻感与应对方式、造口适应、生活质量的相关性研究. 合肥: 安徽医科大学, 硕士学位论文, 2016.
24. 沈晓红, 姜乾金. 医学应对方式问卷中文版701例测试报告. 中国行为医学科学, 2000, 9(1): 18-20.
25. 徐晖, 李栓荣, 李峥. 精神疾病患者歧视感知状况及应对方式的研究. 中国全科医学, 2012, 15(28): 3281-3283.
26. 李江婵, 姚素华, 谢秀东, 等. 认知行为治疗对抑郁症患者病耻感和应对方式的影响研究. 中国全科医学, 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. 朱丽. 恢复期精神分裂症患者病耻感与服药依从性的相关性. 皖南医学院学报, 2014, 33(5): 455-458.
31. 张红彩. 精神分裂症患者的病耻感与服药依从性关系的研究. 北京: 中国协和医科大学, 硕士学位论文, 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耻感现状与社会支持及自尊的相关研究. 长春: 吉林大学, 硕士学位论文, 2017.
34. 李荣, 李广庆, 闫荣, 等. 宫颈癌患者病耻感现状及其相关影响因素分析. 现代临床护理, 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. 张咪. 癫痫患者对癫痫知晓程度及精神共患病与生活质量的研究. 西安: 西安医学院, 硕士学位论文, 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. 齐玲, 王婧, 杨梅, 等. 自我隐瞒与健康关系研究现况及发展趋势. 中国社会医学杂志, 2015, 32(1): 45-47.

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癫痫患者病耻感对社交回避和苦恼影响的研究进展

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