Communications breakdown: HIV+ women and providers

Nearly half of black women change clinicians

A new study finds that many HIV-infected women have had less than ideal interactions with their medical providers.

"The take-home message was there is room for improvement in terms of interactions between HIV-infected women and their health care providers," says Kathleen Squires, MD, a professor of medicine and director of the division of infectious diseases at Jefferson Medical College at Thomas Jefferson University in Philadelphia, PA.

The study surveyed 700 women who were recruited from a U.S. national network of AIDS counseling centers. It found that 60% of the women had changed health care providers while receiving HIV treatment.1

Hispanic and African American women, who accounted for over 70% of those who were surveyed, were more likely than Caucasian women to change health care providers because of communication issues.1

Nearly half of African American women changed providers because of communication problems, and 37% of Hispanic women cited communication as the reason for their switching providers.1

"Over half of the women said they and their physicians had never really talked about whether there were gender-based differences in treatment issues," Squires says.

These would include differences in reactions to drugs, different side effects, and the complications of pregnancy.

"All of us were surprised at the magnitude of some of the communication gaps," says Sally L. Hodder, MD, a professor of medicine and director of the Adult HIV Programs at New Jersey Medical School in Newark, NJ.

Women of color especially expressed concern about communication with their providers, Hodder says.

"In the United States, women of color constitute almost 80% of HIV cases among women," Hodder says. "This suggests we really need to have effective cultural competency and communication strategies with patients, whomever they are."

Also, a large percentage of women, who had been pregnant or were considering becoming pregnant, had never been asked by their health care provider of what they thought about becoming pregnant and what they might do to change their antiretroviral regimen if they were to become pregnant, Squires says.

These women perceived being stigmatized by society if they wanted to have children, Hodder says.

"I was really surprised by the enormous perceived stigma that HIV-infected women expressed," Hodder says. "If folks feel that society urges them not to have children, then why would they want to communicate with a provider about that?"

This means it's important for HIV clinicians to be proactive and ask women of childbearing years about their thoughts on having children, Hodder says.

"A lot goes into preconception counseling, including talking about smoking and drinking," she adds.

Three-quarters of the women said that having HIV impacted their activities of daily living, Squires says.

Although the study was a survey and not a randomized clinical trial, it was the largest survey of its type, and the results are revealing, she notes.

"The results say that in terms of health care there is room for improvement," Squires says. "For health care providers, it's useful to see the results of this study to help them understand."

Hodder speculates that the communication problems are partly due to time constraints in HIV care.

"In the current health care system you have a return appointment in most clinics lasting 20 minutes," Hodder says. "Clinicians have a lot of pressure to see the patient, examine the patient, sign a note, write a prescription, and they don't think they have time to adequately address with open-ended questions what's going on in the patient's life."

Since HIV infection often occurs in the context of poverty, substance abuse, homelessness, and other social issues that impact the patient's medical condition, the 20 minutes is not enough time to address all of these issues, Hodder explains.

"One of the things I think is very important in an HIV clinic is to have not just one person caring for a case, but having multiple people with expertise in multiple areas," she adds. "We'll see if Ryan White funding will continue to support those HIV clinics at a financial level that will permit multidisciplinary clinics."


  1. Hodder S, Aberg J, Feinberg J, et al. Perceptions of care by HIV-infected women in the United States. Abstract presented at the 48th Annual ICAAC/IDSA 46th Annual Meeting, held Oct. 25-28, 2008, in Washington, DC. Abstract: H-443.