HIV Patients Perceive Discrimination by

§ To avoid misunderstandings, discuss with patients any circumstances that could lead to a perception of discrimination. Even referring a patient to a physician with more HIV expertise could be interpreted as rejection.

One in four HIV-infected adults reported that they had experienced discrimination by a healthcare provider, with more than half citing their physicians as offenders, according to a large nationally representative study.

Twenty-six percent of HIV-infected adults reported discrimination, including 8% who said they had been refused service, Mark A. Schuster, M.D., Ph.D., a Rand researcher here and a professor of health services at UCLA reported in the current issue of the Journal of General Internal Medicine.

In a study of 2,466 HIV-infected adults, 54% attributed their discrimination experience to physicians. This was followed by 39% who pointed to nurses and other clinical staff, 32% who cited dentists, 31% who blamed other hospital staff, and 8% who cited social workers and case managers.

Dr. Schuster and colleagues noted that their study did not validate that discrimination had actually occurred. There may have been misunderstandings between patients and caregivers, they pointed out.

Nevertheless, Dr. Schuster said, any perception of discrimination, subtle or overt, could have negative health consequences. Irrespective of whether the discrimination is imagined, the investigators concluded, it's up to clinicians to extend the olive branch.

The UCLA researchers used cross-sectional data from 1996 and 1997 derived from the HIV Cost and Services Utilization Study, which included in-person interviews with 2,466 HIV-infected adults receiving health care within the continental U.S. Forty-five percent were cared for by generalists, while 46% were treated by infectious disease specialists.

Seventy-seven percent of the patients were male, 49% were white, 33% were African-American, and 15% were Latino. Three-fourths of the group had completed high school. More than half (55%) were 35 to 49 years old; 34% were ages 18 to 34, and 11% were older than 50.

During the interviews, the participants were asked whether they had experienced any of the following four types of discrimination by a healthcare provider in a clinical setting: had the healthcare provider "been uncomfortable with you," "treated you as inferior," "preferred to avoid you," or had the person refused service.

If participants answered yes to any of these questions, they were asked to name the person's healthcare category: physician, nurse or other clinical staff, dentist, hospital employee, social worker/case manager, or someone else. The patients were also asked about their access to healthcare, quality of the care they received, and whether they trusted their doctor and clinic.

The results showed that 26% reported at least one of four types of discrimination. Twenty percent reported that a healthcare provider had been uncomfortable with them; 17% said they had been treated in an inferior way; 18% said the person preferred to avoid them, and 8% said they had been refused service.

In a further analysis of the study participants, the researchers found that 32% of the white respondents reported discrimination compared with 21% of Latinos and 17% of African-Americans. African-Americans and Latinos had a lower adjusted odds of perceived discrimination (p<.001).

Of those who had completed high school, 27% reported discrimination (OR 1.45; 95% CI 1.09-1.91) compared with 19% of those without a high school degree. The researchers suggested that higher education could be associated with greater awareness of discrimination.

Race clearly was a factor, the authors concluded. There could be several reasons why whites reported higher rates of discrimination than blacks and Latinos. Populations that have been discriminated against in the past may be less likely to report discrimination, the authors said. "African-Americans and Latinos may typically experience worse care and thus be unaware that better care exists," Dr. Schuster's team wrote.

There is also what the researchers called the "black sheep" effect, in which "clinicians might feel more hostility to people who are generally similar to themselves except for characteristics that they view negatively, such as being gay or having HIV."

In what year the patient received his or her first positive HIV test was also significant (P<.001). Thirty-four percent of those whose first positive test dated before 1986, at the outset of the AIDS epidemic, reported discrimination compared with 20% whose first positive test came between 1994 and 1996.

Among those who reported discrimination, access to care, the quality of medical care, and trust in doctors were all lower. "Discrimination remained significantly associated with each of these health care measures (P<.001)," Dr. Schuster's team wrote.

However, after reviewing all their study's troublesome finding, the authors pointed out that some patients may have simply misunderstood the clinician's intentions. For example, "a patient may assume that an abrupt physician is prejudiced when he/she is actually abrupt with everyone," they wrote. Another example could be that when a physician refers the patient to another physician with greater HIV expertise, the patient mistakes that decision as a refusal of care.

"Clinicians should make efforts to address circumstances that lead patients to perceive discrimination, whether real or imagined," they concluded. "Educational programs and modeling of nondiscriminatory behavior can teach clinicians and students to provide unbiased care."

Additional HIV/AIDS Coverage

Primary source: Journal of General Internal Medicine
Source reference:
Schuster M. "Perceived Discrimination in Clinical Care in a Nationally Representative Sample of HIV-Infected Adults Receiving Health Care," Journal General Internal Medicine. Oct. 2005; 20:p.807-813