One in four people with HIV surveyed in Los Angeles felt stigmatised by their healthcare providers, with low income people who difficulty accessing medical care more likely to feel stigmatised, researchers report in the August issue of AIDS Patient Care and STDs.
"Whether or not it is actual stigmatisation is hard to measure, because it's coming from the patients that we interviewed," said UCLA researcher Janni J. Kinsler, the study's project director and lead researcher. "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."
The study results were based on surveys of 223 HIV-positive individuals in Los Angeles County, with initial baseline interviews taking place between May 2004 and June 2005 and follow-up interviews conducted six months later, from November 2004 to December 2005.
Of the 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.
There are two types of stigma: external, or "public," stigma and personal, or "perceived," stigma. The latter refers to individuals' anticipated fears of disapproval or discrimination because of their HIV infection.
Researchers questioned 223 patients during the baseline interviews and 171 during the follow-up. They were asked the following questions about stigmatisation:
Since you contracted HIV, has any healthcare 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 six questions related to their access to healthcare: 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 healthcare 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 healthcare 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 said.
Researchers noted the significance that 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, hospitalisation and earlier death.
"Negative experiences with providers may discourage patients from returning from follow-up medical appointments," the researchers add.
Access to care was also significantly affected by insurance status at baseline (those without insurance were 2.5 times more likely to report difficulties in accessing care), but this difference had disappeared by the time of six month follow-up.
The next step is to investigate whether physicians are in fact stigmatising these patients, Kinsler said.
Kinsler JJ 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 21(8): 58-66, 2007.