Don’t ask, don’t tell: concealment as a stigma management strategy in India

'I am doing fine only because I have not told anyone': the necessity of concealment in the lives of people living with HIV in India.

George MS, Lambert H. Cult Health Sex. 2015 Feb 23:1-14. [Epub ahead of print]

In HIV prevention and care programmes, disclosure of status by HIV-positive individuals is generally encouraged to contain the infection and provide adequate support to the person concerned. Lack of disclosure is generally framed as a barrier to preventive behaviours and accessing support. The assumption that disclosure is beneficial is also reflected in studies that aim to identify determinants of disclosure and recommend individual-level measures to promote disclosure. However, in contexts where HIV infection is stigmatised and there is fear of rejection and discrimination among those living with HIV, concealment of status becomes a way to try and regain as much as possible the life that was disrupted by the discovery of HIV infection. In this study of HIV-positive women and children in India, concealment was considered essential by individuals and families of those living with HIV to re-establish and maintain their normal lives in an environment where stigma and discrimination were prevalent. This paper describes why women and care givers of children felt the need to conceal HIV status, the various ways in which people tried to do so and the implications for treatment of people living with HIV. We found that while women were generally willing to disclose their status to their husband or partner, they were very keen to conceal their status from all others, including family members. Parents and carers with an HIV-positive child were not willing to disclose this status to the child or to others. Understanding the different rationales for concealment would help policy makers and programme managers to develop more appropriate care management strategies and train care providers to assist clients in accessing care and support without disrupting their lives.

Abstract access  [1]

Editor’s notes: This paper provides a powerful illustration of the persistence of stigma in the lives of many people living with HIV in India. Using data collected in 2012, the authors illustrate how prejudice and discrimination shape the lives of the women and children included in this study. While access to antiretroviral therapy (ART) provided a way for participants to regain and maintain what is described as ‘normal life’, that same treatment could result in unintended disclosure. Participants spoke of the fear of being seen carrying ART, since illustrations of the pills were widely available at clinics. They described the challenges of disclosing to their children as well as other relatives. Disclosure to wider social networks posed a reputational threat because of the association of HIV with moral laxity. All these are challenges that many people face in other settings too, providing further evidence of the persistence of HIV-associated stigma. The authors also illustrate the unintended consequences of well-meaning policies. One striking illustration came from a participant who was using a free travel pass, available to people living with HIV to collect their treatment. The pass included the word ‘AIDS’ and a ticket collector ridiculed the woman and her husband in front of other passengers because of this evidence of infection. The authors make the point that encouraging disclosure may overlook the importance of concealment as a way to cope with stigma. 

Asia [11]
India [12]
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