艾滋病病耻感的研究进展
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摘要
人类免疫缺陷病毒感染者和艾滋病患者(HIV/AIDS)因疾病本身特征和人们对其的歧视态度而广泛存在着不同程度的病耻感。这种病耻感比其症状经历还要痛苦。不仅会使患者沮丧、自卑及恐惧社交,还会限制其对社会资源寻求帮助,极大地影响了PLWHA的治疗依从性和生活质量,这已经成为了一个不容忽视的问题。该文通过对国内外艾滋病病耻感的有关概念、研究现状、影响因素、测量工具、对患者的影响及干预措施进行综述,旨在了解艾滋病病耻感现状,为开展降低艾滋病病耻感的有效措施提供借鉴。
Because of the disease itself and people's discrimination,people living with HIV/AIDS(PLWHA) are experiencing varying degrees of stigma. And the sense of stigma is painful than their symptoms. It not only make patients fell frustrated,low self-esteem and fear of social,but also limit them access to social resources,which greatly affected the PLWHA treatment compliance and quality of life. It has become a problem cannot be ignored. Therefore,this paper summarizes the related concepts about stigma of AIDS,as well as research status,influencing factors,measurement tools,the impact on patients and the interventions,aiming to understand the stigma status of AIDS and provide reference for effective measures to reduce the stigma of AIDS.
Because of the disease itself and people's discrimination,people living with HIV/AIDS(PLWHA) are experiencing varying degrees of stigma. And the sense of stigma is painful than their symptoms. It not only make patients fell frustrated,low self-esteem and fear of social,but also limit them access to social resources,which greatly affected the PLWHA treatment compliance and quality of life. It has become a problem cannot be ignored. Therefore,this paper summarizes the related concepts about stigma of AIDS,as well as research status,influencing factors,measurement tools,the impact on patients and the interventions,aiming to understand the stigma status of AIDS and provide reference for effective measures to reduce the stigma of AIDS.
引文
[1]中国疾病预防控制中心,性病艾滋病控制中心,性病控制中心.2017年7月全国艾滋病性病疫情[J].中国艾滋病性病,2017,23(9):775.
[2]ML DS,PIETER K,MELLORS SE,et al.An exploratory survey measuring stigma and discrimination experienced by people living with HIV/AIDS in South Africa:the People Living with HIV Stigma Index[J].BMJ Public Health,2014,14(1):80.
[3]GOFFMAN E.Stigma:notes on the management of spoiled identity[M].Englewood Cliffs:Prentice Hall,1963.
[4]于媛,刘均娥.肺癌患者病耻感的研究进展[J].中华护理杂志,2014,49(11):1386-1390.
[5]MOORE GA,HAWLEY DA,BRADLEY P.Hepatitis C:studying stigma[J].Gastroenterol Nurs,2008,31(5):346-352.
[6]HILBERT RA.Social Stigma:The Psychology of Marked Relationships.by Edward E.Jones;Amerigo Farina;Albert H.Hastorf;Hazel Markus;Dale T.Miller;Robert A.Scott[J].Contemp Sociol,1985,14(3):401.
[7]GREEN G.Attitudes towards people with HIV:are they as stigmatizing as people with HIV perceive them to be?[J].Soc Sci Med,1995,41(4):557-68.
[8]JOFFE H.Risk and'the other'[M].Cambridge University Press,1999.
[9]LINK BG,PHELAN JC.Conceptualizing Stigma[J].Annu Rev Sociol,2001,27(1):363-385.
[10]PARKER R,AGGLETON P.HIV and AIDS-related stigma and discrimination:a conceptual framework and implications for action[J].Soc Sci Med,2003,57(1):13-24.
[11]LEE RS,KOCHMAN A,SIKKEMA KJ.Internalized Stigma Among People Living with HIV-AIDS[J].AIDS Behav,2002,6(4):309-319.
[12]SWENDEMAN D,ROTHERAMBORUS MJ,COMULADA S,et al.Predictors of HIV-related Stigma among Young People Living with HIV[J].Health Psychol,2006,25(4):501-509.
[13]STEWARD WT,HEREK GM,RAMAKRISHNA J,et al.HIV-related stigma:adapting a theoretical framework for use in India[J].Soc Sci Med,2008,67(8):1225-1235.
[14]张渊,钮文异,孙昕霙.医务人员对艾滋病人态度及其相关因素分析——以北京两所综合医院为例[J].医学与哲学,2011,32(15):32-34.
[15]OWOLABI RS,ARAOYE MO,OSAGBEMI GK,et al.Assessment of stigma and discrimination experienced by people living with HIV and AIDS receiving care/treatment in University of Ilorin Teaching Hospital(UITH),Ilorin,Nigeria[J].J Int Assoc Physicians AIDS Care,2012,11(2):121.
[16]李宏,王哲,徐俊杰,等.艾滋病相关歧视与抗HIV病毒药物服药依从性等因素的关联性分析[J].医学研究杂志,2013,42(3):18-20.
[17]陈永聪,陈莹,王学良,等.AIDS相关羞辱与歧视的研究进展[J].中国艾滋病性病,2004,10(6):477-478.
[18]LOUTFY MR,LOGIE CH,ZHANG Y,et al.Gender and Ethnicity Differences in HIV-related Stigma Experienced by People Living with HIV in Ontario,Canada[J].PLOS ONE,2012,7(12):e48168.
[19]黄志征,傅卓华,赵秀萍,等.苏州市HIV/AIDS患者自我羞辱与歧视的现况研究[J].江苏预防医学,2015,26(2):10-12.
[20]黎湘娟,陈世艺,徐永芳,等.南宁市HIV感染者/艾滋病患者遭遇相关羞辱和歧视的影响因素调查研究[J].中国性科学,2014,23(7):108-110.
[21]阎冬梅,张秀军.艾滋病病人的病耻感现状调查[J].中国艾滋病性病,2016,22(9):740-742.
[22]FIFE BL,WRIGHT ER.The dimensionality of stigma:a comparison of its impact on the self of persons with HIV/AIDS and cancer[J].J Health Soc Behav,2000,41(1):50-67.
[23]PAN AW,CHUNG L,FIFE BL,et al.Evaluation of the psychometrics of the Social Impact Scale:a measure of stigmatization[J].Int J Rehabil Res,2007,30(3):235.
[24]BERGER BE,FERRAS CE,LASHLEY FR.Measuring stigma in people with HIV:psychometric assessment of the HIV stigma scale[J].Res Nurs Health,2001,24(6):518-529.
[25]HOLZEMER WL,UYS L,MAKOAE L,et al.A conceptual model of HIV/AIDS stigma from five African countries[J].J Adv Nurs,2007,58(6):541.
[26]李现红,何国平,王红红,等.HIV/AIDS相关羞辱和歧视量表的编制及评价[J].中华护理杂志,2010,45(6):496-499.
[27]CHESNEY MA,SMITH AW.Critical Delays in HIV Testing and Care The Potential Role of Stigma[J].Am Behav Sci,1999,42(42):1162-1174.
[28]张源洁.歧视对佤族农村社区艾滋病防治及感染者生活的负面效应[J].中国性科学,2010,19(11):45-48.
[29]HEREK GM,GLUNT EK.An epidemic of stigma.Public reactions to AIDS[J].Am Psychol,1988,43(11):886-91.
[30]李为民.HIV/AIDS患者配偶心理体验的质性研究[J].护理学杂志,2008,23(11):57-59.
[31]林慧,梁祖光,梁飘,等.重性精神病患者及其家属病耻感调查与干预[J].中国全科医学,2014(13):1551-1553.
[32]CORRIGAN PW,CALABRESE JD.Strategies for Assessing and Diminishing Self-Stigma[M].Washington,DC:American Psychological Association,2005:239-256.
[33]丛小兵.认知疗法对康复期精神分裂症患者病耻感的影响[J].实用临床医药杂志,2013,17(24):135-136.
[34]董彩婷,兰亚佳,王勇胜,等.美沙酮维持治疗者家庭帮扶模式的研究[J].中国艾滋病性病,2008,14(4):357-359.
[35]LI L,WU Z,WU S,et al.Impacts of HIV/AIDS Stigma on Family Identity and Interactions in China[J].Fam Syst Health,2008,26(4):431-442.
[36]高建华,郑锡文,施小明,等.农村既往有偿供血社区居民AIDS相关歧视和耻辱调查[J].中国艾滋病性病,2004,10(3):175-177.
[2]ML DS,PIETER K,MELLORS SE,et al.An exploratory survey measuring stigma and discrimination experienced by people living with HIV/AIDS in South Africa:the People Living with HIV Stigma Index[J].BMJ Public Health,2014,14(1):80.
[3]GOFFMAN E.Stigma:notes on the management of spoiled identity[M].Englewood Cliffs:Prentice Hall,1963.
[4]于媛,刘均娥.肺癌患者病耻感的研究进展[J].中华护理杂志,2014,49(11):1386-1390.
[5]MOORE GA,HAWLEY DA,BRADLEY P.Hepatitis C:studying stigma[J].Gastroenterol Nurs,2008,31(5):346-352.
[6]HILBERT RA.Social Stigma:The Psychology of Marked Relationships.by Edward E.Jones;Amerigo Farina;Albert H.Hastorf;Hazel Markus;Dale T.Miller;Robert A.Scott[J].Contemp Sociol,1985,14(3):401.
[7]GREEN G.Attitudes towards people with HIV:are they as stigmatizing as people with HIV perceive them to be?[J].Soc Sci Med,1995,41(4):557-68.
[8]JOFFE H.Risk and'the other'[M].Cambridge University Press,1999.
[9]LINK BG,PHELAN JC.Conceptualizing Stigma[J].Annu Rev Sociol,2001,27(1):363-385.
[10]PARKER R,AGGLETON P.HIV and AIDS-related stigma and discrimination:a conceptual framework and implications for action[J].Soc Sci Med,2003,57(1):13-24.
[11]LEE RS,KOCHMAN A,SIKKEMA KJ.Internalized Stigma Among People Living with HIV-AIDS[J].AIDS Behav,2002,6(4):309-319.
[12]SWENDEMAN D,ROTHERAMBORUS MJ,COMULADA S,et al.Predictors of HIV-related Stigma among Young People Living with HIV[J].Health Psychol,2006,25(4):501-509.
[13]STEWARD WT,HEREK GM,RAMAKRISHNA J,et al.HIV-related stigma:adapting a theoretical framework for use in India[J].Soc Sci Med,2008,67(8):1225-1235.
[14]张渊,钮文异,孙昕霙.医务人员对艾滋病人态度及其相关因素分析——以北京两所综合医院为例[J].医学与哲学,2011,32(15):32-34.
[15]OWOLABI RS,ARAOYE MO,OSAGBEMI GK,et al.Assessment of stigma and discrimination experienced by people living with HIV and AIDS receiving care/treatment in University of Ilorin Teaching Hospital(UITH),Ilorin,Nigeria[J].J Int Assoc Physicians AIDS Care,2012,11(2):121.
[16]李宏,王哲,徐俊杰,等.艾滋病相关歧视与抗HIV病毒药物服药依从性等因素的关联性分析[J].医学研究杂志,2013,42(3):18-20.
[17]陈永聪,陈莹,王学良,等.AIDS相关羞辱与歧视的研究进展[J].中国艾滋病性病,2004,10(6):477-478.
[18]LOUTFY MR,LOGIE CH,ZHANG Y,et al.Gender and Ethnicity Differences in HIV-related Stigma Experienced by People Living with HIV in Ontario,Canada[J].PLOS ONE,2012,7(12):e48168.
[19]黄志征,傅卓华,赵秀萍,等.苏州市HIV/AIDS患者自我羞辱与歧视的现况研究[J].江苏预防医学,2015,26(2):10-12.
[20]黎湘娟,陈世艺,徐永芳,等.南宁市HIV感染者/艾滋病患者遭遇相关羞辱和歧视的影响因素调查研究[J].中国性科学,2014,23(7):108-110.
[21]阎冬梅,张秀军.艾滋病病人的病耻感现状调查[J].中国艾滋病性病,2016,22(9):740-742.
[22]FIFE BL,WRIGHT ER.The dimensionality of stigma:a comparison of its impact on the self of persons with HIV/AIDS and cancer[J].J Health Soc Behav,2000,41(1):50-67.
[23]PAN AW,CHUNG L,FIFE BL,et al.Evaluation of the psychometrics of the Social Impact Scale:a measure of stigmatization[J].Int J Rehabil Res,2007,30(3):235.
[24]BERGER BE,FERRAS CE,LASHLEY FR.Measuring stigma in people with HIV:psychometric assessment of the HIV stigma scale[J].Res Nurs Health,2001,24(6):518-529.
[25]HOLZEMER WL,UYS L,MAKOAE L,et al.A conceptual model of HIV/AIDS stigma from five African countries[J].J Adv Nurs,2007,58(6):541.
[26]李现红,何国平,王红红,等.HIV/AIDS相关羞辱和歧视量表的编制及评价[J].中华护理杂志,2010,45(6):496-499.
[27]CHESNEY MA,SMITH AW.Critical Delays in HIV Testing and Care The Potential Role of Stigma[J].Am Behav Sci,1999,42(42):1162-1174.
[28]张源洁.歧视对佤族农村社区艾滋病防治及感染者生活的负面效应[J].中国性科学,2010,19(11):45-48.
[29]HEREK GM,GLUNT EK.An epidemic of stigma.Public reactions to AIDS[J].Am Psychol,1988,43(11):886-91.
[30]李为民.HIV/AIDS患者配偶心理体验的质性研究[J].护理学杂志,2008,23(11):57-59.
[31]林慧,梁祖光,梁飘,等.重性精神病患者及其家属病耻感调查与干预[J].中国全科医学,2014(13):1551-1553.
[32]CORRIGAN PW,CALABRESE JD.Strategies for Assessing and Diminishing Self-Stigma[M].Washington,DC:American Psychological Association,2005:239-256.
[33]丛小兵.认知疗法对康复期精神分裂症患者病耻感的影响[J].实用临床医药杂志,2013,17(24):135-136.
[34]董彩婷,兰亚佳,王勇胜,等.美沙酮维持治疗者家庭帮扶模式的研究[J].中国艾滋病性病,2008,14(4):357-359.
[35]LI L,WU Z,WU S,et al.Impacts of HIV/AIDS Stigma on Family Identity and Interactions in China[J].Fam Syst Health,2008,26(4):431-442.
[36]高建华,郑锡文,施小明,等.农村既往有偿供血社区居民AIDS相关歧视和耻辱调查[J].中国艾滋病性病,2004,10(3):175-177.