[procaare] HCC:Post Conference discussion -20

[Insight Initiative Team <insight@hdnet.org>]

HCC: Post Conference discussion - 20
- HDN Key Correspondents/Rapporteur Team,Thailand
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[Moderators note: In your experience, what strategies have you found to be effective in
addressing stigma in the Home and Community setting?]

Stigma in the context of Home and Community Care

We spoke to several delegates at the 5 th HCC conference (Home and Community Care) in
Chiang Mai who all felt that stigma is the greatest barrier to HCC, at times more so than
poverty. They cited this as the main reason for people's reluctance to disclose their HIV
status or the status of a family member.

They agreed that stigma originates from labels that are attached to people, which are a
result of a negative or prejudiced attitude towards the source or the way the infection is
acquired. This was clearly the case early on in the epidemic, where admitting that you
were HIV positive was like saying that you 'had been bad'- promiscuous, gay, or were using
drugs. Society associated HIV/AIDS with moral issues and it was linked with certain
marginalized groups in society, which already carried negative labels. Fortunately there
has been some change in this thinking.

Lynde Francis, Zimbabwe a plenary speaker, pointed out that another form of stigma which
is difficult to deal with is from within - internal stigma. This is a stigma felt by PLHAs
because of some of the initial HIV prevention messages, which put blame on how people
became infected. This stigma is usually accompanied by a sense of guilt and shame. " Work
needs to be done rebuilding self-esteem to fight this type of stigma." Lynde added.
"Empowering programmes have to be part of the process to restore the lost self- esteem."
In some instances, PLHAs are stigmatized so much that they internalize the label and start
living the labeled life.

In a 'Voices for Choices' presentation by Dr. Uraiwan Kanuengsak, issues of internalized
stigma were discussed. In the presentation, it was noted that the women in the project
expressed the desire to have their own institutions for positive women, i.e. health
facilities, homes for positive women and workplaces for positive women only. This was a
clear sign of a group of people who had been labeled and stigmatized so much so that they
eventually accepted the label and started living the life.

This is in agreement with pre-conference discussions that when clothed in LOVE,
stigmatization in HCC may be disguised as care and may take the form of isolation.

The Voices for Choices study also indicated that PLHA women did not want to be a burden to
their family members. This feeling is not unique to PLHAs, and any chronic debilitating
disease can induce these feelings. However, these women still require support and
acceptance in order to function optimally. In this study it was noted that, the men only
accepted the infected women if they were a cousin, not a wife, thus decreasing self-esteem
and increasing secrecy.

It is evident that a great deal still needs to be done to address stigma, but it is
possible to change the tide. We have seen that if stigma is addressed at the highest level
of society it can have a formidable impact as was demonstrated in Uganda. During the early
years of the epidemic, Uganda carried the reputation of being the 'AIDS Capital'.
Acknowledging the problem, the Head of state, President Museveni, openly declared that
there was a problem in Uganda and he encouraged openness in the approach. Today, Uganda
proudly stands as one of the few African countries that have recorded a decline in HIV
incidence.

HDN Key Correspondent Team
Rapporteur Team
E-mail: correspondents@hdnet.org

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The Insight Initiative Project is managed by Health & Development Networks (HDN) in
collaboration with the Thailand Red Cross Society, the World Health Organization and the
Royal Thailand Government, with financial support from AusAid and UNAIDS.

For more information about this project (the 'Insight Initiative'), visit the HDN website
at: http://www.hdnet.org

Fifth International Conference on Home and Community Care for Persons Living with HIV/AIDS
Chiang Mai, Thailand - 17-20 December 2001
Website: http://www.hiv2001.com


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