Certain manifestations of stigma especially hurtful for people with HIV

Michael Carter
Published: 05 November 2009

Specific manifestations of HIV-related stigma best predict psychological distress in HIV-positive individuals, Dutch investigators report in the November edition of AIDS. These include difficulties with health care workers and lack of frankness within the family, but also exaggerated kindness from family members.

“Our findings suggest that certain setting-specific manifestations of stigma are indeed more psychologically damaging than others”, comment the investigators.

There is a considerable body of research that shows that HIV-related stigma causes psychological distress in people with or affected by HIV. However, no research has previously explored how particular manifestations of stigma in certain settings affects the psychological well-being of people with HIV.

In 2007, Dutch investigators therefore conducted a cross-sectional (or “snap-shot”) study involving 669 HIV-positive patients. These patients had a mean age of 47 years and were well educated, with almost 50% having a degree. Most (80%) were gay men, 68% were in employment and 48% had a partner.

The study participants completed a questionnaire to determine the manifestations of HIV-related stigma that were most associated with distress in six settings (friends, family, healthcare, partner, work, and leisure).

A total of eleven manifestations of stigma were included in the questionnaire (advice to conceal HIV infection or not to disclose, blame, increased physical distance, excessive hygiene, indifference, exclusion, awkward social interactions, exaggerated kindness, and aggression).

Manifestations of stigma from friends that were most associated with distress were awkwardness and excessive kindness. Being advised to conceal one’s HIV status, avoidance and excessive kindness were all associated with distress if experienced from family members. Stigma in healthcare settings was especially upsetting if it involved indifference or awkward social interactions. Finally, advice to conceal and exaggerated kindness caused distress if they were experienced in a relationship.

The investigators conducted statistical analysis that controlled for potentially confounding factors.

This showed that only four manifestations of stigma remained significantly associated with psychological distress.

Three of these were experienced in the setting of the family and were being told to conceal (p < 0.01), avoidance (p < 0.01), and experiencing exaggerated kindness (p < 0.05).

The final significant manifestation of stigma associated with psychological distress involved awkward social interactions in healthcare settings (p < 0.05).

“Stigmatization by family may be particularly detrimental as families are not chosen and often considered an important source of unconditional love and support”, write the investigators, who suggest that experiencing stigma from family members may threaten the fundamental human “need to belong.”

As healthcare professionals are expected to be knowledgeable about HIV, the investigators suggest that actions that suggest stigma are likely to be especially disappointing for people with HIV and cause distress.


Stutterheim SE et al. HIV-related stigma and psychological distress: the harmful effects of specific stigma manifestations in various social settings. AIDS 23: 2353-57, 2009.

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