Social Stigma Felt by Pregnant HIV Positive Women in the U.S.

There have been many advances in HIV care for HIV positive women over the past 10 years. Nonetheless, there is still considerable social stigma related to pregnancy and childbearing in HIV positive women. In particular, HIV positive women who are the sole caregivers of dependent children may feel stigmatized by society at large. Understandably, many of these women feel their children also will be stigmatized if their mother's HIV status is known.

Social stigma can have a negative effect on the course of disease progression in HIV positive women by discouraging them from seeking early medical care for HIV.

At the XVII International AIDS Conference this month in Mexico City (August 3-8, 2008), researchers presented results of the Women Living Positive survey, which was designed to identify the attitudes and behaviors of HIV positive women in the U.S. The survey focused primarily on women's perceived societal views of pregnancy and childbearing in HIV positive women.

The Women Living Positive Survey

This telephone-based survey was conducted among HIV positive women receiving antiretroviral therapy for 3 or more years. The 15-minute survey consisted of a series of eligibility questions plus 45 questions designed to detail the patient's relationship with HIV care providers, treatment priorities, and general understanding of pregnancy and HIV. The emotional aspects of living with HIV, including gender specific questions about pregnancy and family planning, were also assessed.

The survey was conducted by GfK Roper Public Affairs, a public opinion polling firm, and funded by Boehringer Ingelheim Pharmaceuticals. The Well Project, a non-profit organization that focuses on women with HIV, had input on survey questions.

Respondents were anonymously interviewed by telephone from December 21, 2006 through March 14, 2007. Interviews were conducted in both English and Spanish. Data were weighted by census regions and race/ethnicity in order to match the demographic profile of adult HIV positive women in the U.S. Survey participants were compensated $25 for their time.

A total of 700 HIV positive women participated in the survey (42.9% African American, 28.6% Hispanic, 28.6% Caucasian). The mean age of the women was 42.5 years; 39% had children. With regard to geographic distribution, 16% of the participants resided in the Western U.S., 21% in the Midwest, 33% in the South, and 30% in the Northeast.

Results

• 61% of the participants felt that HIV positive women can have children if they receive the appropriate medical information and support.

• 59%, however, believe that society strongly urges them not to have children.

• Caucasian women were significantly more likely than Hispanic women to feel that society strongly urges them not to have children (67% vs 53%; P= <0.05).

• Study participants from the South were less likely than those from the Midwest or Northeast to feel that HIV positive can have children when provided the appropriate medical information and support.

• Women in the South were also more likely to feel that society believes HIV positive women should be strongly urged not to have children.

• Women who were under the care of an infectious disease specialist or a family physician/general practitioner were more likely to feel societal stigma than those treated by other types of providers (nurse practitioners, obstetricians/gynecologists, and other types of physicians).

In conclusion, the researchers wrote, "This survey of HIV positive women revealed a dichotomy between personal and perceived societal views on pregnancy and childbearing in HIV positive women, with more than half of the participants experiencing societal pressure to forego childbearing."

In addition, they noted, "These results highlight the need for up-to-date, factual education regarding pregnancy and childbearing in HIV positive women among both the lay and medical communities."

8/19/08

Reference
K Squires, D Averitt Bridge, J Aberg, and others. Social stigma of pregnant HIV-infected women in the US. XVII International AIDS Conference (AIDS 2008). Mexico City. August 3-8, 2008. Abstract TUPE0908.