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)...
a Indian Institute of Public Health, Delhi, India
b School of Social and Community Medicine, University of
Bristol, Bristol, UK
