Saturday, March 19, 2016

‘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

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.

...[E]very participant was extremely concerned about concealment and described various means they employed in order to achieve this. These included hiding their ART registers, decanting their medication and leaving the pill boxes at the clinic, using a generic container to store the pills and coming up with alternate explanations for visits to the clinic and taking medication:

I keep the card in a cover and then keep it inside a cupboard below the sarees. Once a month when I come here, I take it from the cupboard and bring it here.

(Widow living with HIV, W1)

I bring one box from my home, transfer the tablets to it and leave this box here only.

(Widow living with HIV, W6)

There used to be an LIC (insurance) office just opposite this hospital so whenever I come here, I tell people who ask me where I am going that I am going to pay the premium. Luckily no one knows that the office has been shifted from here.

(Caregiver of HIV-positive child, PO9)

They ask me why I am taking these tablets. I tell them that I am taking this for fever.

(Woman living with HIV, WH5)... 

Full article at:

By:  Mathew Sunil George a , * and Helen Lambert b
a Indian Institute of Public Health, Delhi, India
b School of Social and Community Medicine, University of Bristol, Bristol, UK

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