Roura Maria, Wringe Alison, Busza Joanna, Nhandi Benjamin, Mbata Doris, Zaba Basia, Urassa Mark
Centre for Population Studies, Department of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, 49-51 Bedford Square, London, WC 1B 3DP, UK.
BMC Int Health Hum Rights. 2009 Sep 9;9:22. doi: 10.1186/1472-698X-9-22.
Once effective therapy for a previously untreatable condition is made available, a normalisation of the disease often occurs. As part of a broader initiative to monitor the implementation of the national antiretroviral therapy (ART) programme, this qualitative study investigated the impact of ART availability on perceptions of HIV in a rural ward of North Tanzania and its implications for prevention.
A mix of qualitative methods was used including semi-structured interviews with 53 ART clinic clients and service providers. Four group activities were conducted with persons living with HIV. Data were analyzed using the qualitative software package NVIVO-7.
People on ART often reported feeling increasingly comfortable with their status reflecting a certain "normalization" of the disease. This was attributed to seeing other people affected by HIV, regaining physical health, returning to productive activities and receiving emotional support from health service providers. Overcoming internalized feelings of shame facilitated disclosure of HIV status, helped to sustain treatment, and stimulated VCT uptake. However "blaming" stigma - where people living with HIV were considered responsible for acquiring a "moral disease" - persisted in the community and anticipating it was a key barrier to disclosure and VCT uptake. Attributing HIV symptoms to witchcraft seemed an effective mechanism to transfer "blame" from the family unit to an external force but could lead to treatment interruption.
As long as an HIV diagnosis continues to have moral connotations, a de-stigmatisation of HIV paralleling that occurring with diseases like cancer is unlikely to occur. Maximizing synergies between HIV treatment and prevention requires an enabling environment for HIV status disclosure, treatment continuation, and safer sexual behaviours. Local leaders should be informed and sensitised and communities mobilised to address the blame-dimension of HIV stigma.
一旦针对先前无法治疗的疾病有了有效的治疗方法,疾病往往会出现正常化。作为监测国家抗逆转录病毒疗法(ART)项目实施情况这一更广泛举措的一部分,这项定性研究调查了在坦桑尼亚北部一个农村地区抗逆转录病毒疗法的可及性对艾滋病毒认知的影响及其对预防工作的影响。
采用了多种定性方法,包括对53名抗逆转录病毒疗法诊所的患者和服务提供者进行半结构式访谈。对艾滋病毒感染者开展了四项小组活动。使用定性软件包NVIVO - 7对数据进行分析。
接受抗逆转录病毒疗法的人经常报告说,他们对自己的病情感觉越来越坦然,这反映出疾病在一定程度上“正常化”了。这归因于看到其他艾滋病毒感染者、恢复身体健康、重新参与生产活动以及得到医疗服务提供者的情感支持。克服内心的羞耻感有助于公开艾滋病毒感染状况、维持治疗并促进自愿咨询检测服务的利用。然而,“指责性”污名(即认为艾滋病毒感染者应对患上“道德疾病”负责)在社区中依然存在,预计这是公开感染状况和利用自愿咨询检测服务的一个关键障碍。将艾滋病毒症状归咎于巫术似乎是一种有效的机制,可将“指责”从家庭单位转移到外部力量,但可能导致治疗中断。
只要艾滋病毒诊断继续带有道德含义,就不太可能出现像癌症等疾病那样的艾滋病毒去污名化情况。要使艾滋病毒治疗与预防之间的协同效应最大化,就需要一个有利于公开艾滋病毒感染状况、持续治疗以及采取更安全性行为的环境。应让地方领导人了解情况并提高认识,动员社区消除艾滋病毒污名中涉及指责的方面。