Over a quarter of American HIV-positive patients think that they have been discriminated against because they have HIV by healthcare workers, researchers have found. In a study published in the October edition of the Journal of General Internal Medicine investigators also found that patients who perceived themselves as experiencing discrimination from healthcare staff also thought that they had worse access to medical care, and received a lower standard of medical care.
Although it is illegal for doctors, clinics and hospitals to discriminate against HIV-positive individuals in the United States, the investigators note that “fear of discrimination keeps some HIV-infected patients from disclosing their infection to clinicians which could compromise receipt of appropriate care.” A feeling of being discriminated against could also, the investigators suggest, “have an adverse effect on psychological health.”
Researchers from the HIV Cost and Services Utilization Study (HCSUS) wished to determine how many HIV-positive people thought that they had experienced discrimination from healthcare providers; the characteristics of the patients who perceived that they had been discriminated against; and whether perceived discrimination affected self-reported access to care and quality of care.
A representative sample of 2,466 HIV-positive individuals from across the US were recruited to the study. In person-to-person interviews, conducted in 1996–1997, they were asked to say if, since their HIV diagnosis, a healthcare provider has been uncomfortable with them, treated them as inferior, tried to avoid them, or refused service to them because of their HIV status. They were asked to say if the discriminating healthcare provider was a doctor, nurse or other member of clinical staff, a dentist, hospital staff, case manager or a social worker. Individuals were also asked to rate the overall quality of care they received.
Just over a quarter of individuals (26%) perceived that they had been discriminated against at least once by a healthcare worker since their HIV diagnosis. A fifth said that their healthcare worker had seemed uncomfortable with them, 17% said that they thought they had been treated as an inferior, 18% reported that they thought that healthcare workers had tried to avoid them, and 8% said that they perceived that services has been refused to them because they had HIV. The investigators comment, “it is especially concerning when refusal is reported by a group for whom the legal system has often had to intervene to assure access to care.”
The experience of discrimination was not evenly spread across demographic groups. The investigators noted that white respondents (32%) were significantly more likely than either Latinos (21%) or African Americans (17%) to report discrimination (p
In addition, better educated patients were also more likely to think that they had received discriminatory treatment, with 27% of high school graduates reporting perceived prejudice compared to 19% of individuals who had not completed their secondary education (p
Insurance status was also significantly associated with a perception of discrimination, with patients who received their care through Medicaid or Medicare more likely than privately insured or uninsured individuals to think that they had received less favourable treatment (p = 0.008).
Several possible explanations are offered for these differences by the investigators. They suggest that the racism and discrimination which none-whites routinely live with in the US may minimise their perception of discrimination “to preserve their self-esteem and sense of control over their lives.” In addition the investigators suggest that white gay men, who were the group most likely to report discrimination, may in some cases have received discriminatory care after their HIV diagnosis because their sexual orientation only became known to their healthcare provider at this time.
Longer duration of HIV infection also increased the likelihood that an individual would report perceived prejudice (p = 0.001).
Over half (54%) of cases of perceived discrimination involved doctors, 39% involved nurses or other clinical staff, 31% involved hospital staff and 8% involved social workers.
Finally, the investigators found that patients who thought that they had been discriminated against were significantly more likely to access medical care (p
The investigators caution that some of the cases of perceived discrimination could be attributable to misunderstanding. For example, a patient might think that referral to an HIV expert might be refusal to treat. They conclude that educational programmes might help reduce discriminatory behaviour and that more research is needed “to improve our understanding of how clinicians’ behaviours can negatively affect patients’ experiences”. They add, “effective strategies must be developed to reduce actual and perceived discrimination in health care.”
Schuster MA et al. Perceived discrimination in clinical care in a nationally representative sample of HIV-infected adults receiving health care. J Gen Intern Med 20: 807 – 813, 2005.