Fears of stigma keep HIV patients from getting care

It's not what you feel, but what you show

The mere perception that a physician is stigmatizing patients for carrying the AIDS virus can discourage HIV-infected people from seeking proper medical care, according to researchers at the University of California at Los Angeles.

At issue, says Janni J. Kinsler, PhD, the study leader and a researcher in general medicine at UCLA, is not what physicians' personal feelings and biases are, but rather how they behave outwardly to their patients.

According to Kinsler, up to one-fourth of patients she and her colleagues surveyed in the Los Angeles area reported feeling stigmatized by their health care providers, and this perception was also linked to low access to care among these patients, a large proportion of whom are low-income and minorities.

"Whether or not it is actual stigmatization is hard to measure, because it's coming from the patients that we interviewed," Kinsler explains. "The point is that these people feel that way, and that's bad enough, because they're less likely to seek the care they need."

HIV-positive people in Los Angeles County were surveyed for the study, with initial baseline interviews taking place between May 2004 and June 2005 and follow-up interviews conducted six months later. Of the 223 respondents, 80% were male, 46% were African-American, and 40% were Latino. Nearly three-quarters had a high school education or less; half had annual incomes below $8,000; and 46% did not have insurance. In addition, 54% of the patients reported that they became infected through homosexual contact, 30% through heterosexual contact, and 16% through intravenous drug use.

Kinsler explains that there are two types of stigma: external or public stigma, and personal or perceived stigma. The latter refers to individuals' anticipated fears of societal attitudes or discrimination because of their HIV infection.

Researchers questioned patients during the baseline interviews and follow-up, asking:

Since you contracted HIV, has any health care provider:

  • been uncomfortable with you?
  • treated you as inferior or in an inferior manner?
  • preferred to avoid you?
  • refused to serve you?

Patients were also asked about their access to health care: whether they had gone without medical care due to expense, if medical care was conveniently located, whether they could obtain medical care whenever they needed it, if they had easy access to medical specialists, if emergency care was easily obtainable, and if they could be admitted to hospitals with no trouble.

The researchers found that at baseline, 26% of the patients reported at least one of the four types of perceived stigma from a health care provider, and 19% reported the same at follow-up. Also, 58% claimed low access to care on at least one of the six relevant questions at baseline, as did 57% at follow-up.

"Most importantly, we found that those who perceived stigma from a health care provider had more than twice the odds of reporting low access to care, even after examining the effect prospectively and adjusting for a host of sociodemographic and clinical characteristics," the researchers reported.1

Perceived stigma "could greatly affect [patients'] use of needed medical services, including antiretroviral therapy." Because of this, patients may seek medical care only when their illness has progressed to a more severe stage, leading to more intensive medical interventions, hospitalization, and earlier death.

The next step is to investigate whether physicians are in fact stigmatizing these patients, Kinsler said.

"It may be easier to reduce stigmatizing behavior than prejudiced attitudes, and to reduce overt acts of stigma such as refusing to provide care, than to change subtle behaviors, such as those that convey discomfort with HIV-infected patients," Kinsler and her fellow researchers write. "Research is needed to improve our understanding of how health care providers' behaviors can negatively affect patients' experiences, and effective strategies must be developed to reduce perceived and public stigma in health care."

Reference

1 . Kinsler JJ, Wong MD, Sayles JN, et al. The effect of perceived stigma from a health care provider on access to care among a low-income HIV-positive population. AIDS Patient Care and STDs 2007;21:584-592.