Stigma's toll on well-being, adherence and behaviors
Stigma's toll on well-being, adherence and behaviors
Clinicians should consider stigma's role
HIV stigma has existed since the world first learned about AIDS, and it's been commonly discussed, but clinicians still need to know more about its impact on their patients' well-being, adherence, and behaviors.
"It's something that we haven't historically defined particularly well or consistently, and we haven't looked at it as closely as we could," says Jennifer Sayles, MD, MPH, author of a paper on stigma and adherence. Sayles is medical director in the Office of AIDS Programs and Policy for the Los Angeles County Department of Public Health in Los Angeles, CA. Sayles also is an assistant professor at the University of California — Los Angeles School of Medicine.
"As an HIV provider, I felt I had the best drugs available to treat the clinical illness of my patients, but a lot of their success was impacted by factors like stigma," Sayles says. "So I wanted to see in a study how the person living with AIDS experienced stigma."
So Sayles and co-investigators studied stigma and any possible associations with patients having regular HIV care, access to treatment, and medication adherence.
"Those three key steps are related to people doing well and living longer with healthy lives," Sayles says.
Researchers looked at a diverse sample of people infected with HIV, including a cohort that is half African American, half with poverty-level incomes, half female, and half who have no health insurance - either public or private, she says.
"We had a sample of about 200 patients, selected from clinical and nonclinical sites," Sayles says. "We gave them a self-administered survey and used an instrument that measured related stigma."
Stigma included the areas of HIV stereotypes, HIV status disclosure concerns, and self-acceptance.
Participants were asked whether they saw their doctors and took their medications as prescribed. Investigators looked at their CD4 cell counts, mental health composite scores, and demographics. The survey, conducted over a six-month period in 2007, was administered in both English and Spanish, Sayles says.
"When we first looked at stigma and adherence, we found that stigma was associated in a binary analysis with having worse self-reported adherence," Sayles says. "When we controlled for all clinical and demographic variables, we still found a strong relationship there."
But when researchers included mental health status in the model, the relationship between stigma and adherence appeared to dissipate, meaning mental health was a mediator of the relationship between stigma and adherence, she adds.
"This means the interaction between mental health status and stigma is very important," Sayles says. "If you had high levels of internalized stigma, then you had 9.5 times the odds of having a poor mental health status."
HIV providers need to keep in mind that patients are interacting in both the small world of HIV/AIDS culture and in the outside world where they may face prejudice and discrimination because of their HIV status, Sayles says.
"Try to understand what the patient process is in terms of their accepting the diagnosis, disclosing it to others, and experiencing stigma," she says. "Providers need to get a feeling for where people are with this."
When Sayles first meets a patient she assesses their outlook regarding HIV disease.
"I look at how patients disclose their status and whether they have a support system," she says. "Do they have concerns about accessing any services related to HIV? What is their mental health status?"
When patients are not adherent with antiretroviral therapy or medical appointments, Sayles will investigate potential causes of the nonadherence, by asking patients these types of questions:
- Did the clinic treat you well?
- Do you feel respected?
- Are you comfortable here?
"The concept of a medical home for HIV patients is important for them to feel accepted," she notes. "It's important to think about medical home models and how you can make patients meet as many needs as possible in that medical home, so they won't feel stigmatized walking into the house."
For HIV patients, the medical home model is one in which they are tied to one center where they have all of their medical needs, as well as some psychosocial needs, met.
"They go there for a majority of their care, and they feel comfortable, engaged, and this reduces some of the barriers," Sayles says.
The stigma barrier is not insignificant: "There are people who will travel as far away as possible from their own communities to receive HIV care because they don't want to be seen by anyone they know," Sayles says.
"Some women like going to a multidisciplinary clinic because they might not be identified as going to an AIDS clinic," she adds. "What we need is to understand what their experience is like and how we can help them reduce this specific barrier of stigma."
HIV stigma has existed since the world first learned about AIDS, and it's been commonly discussed, but clinicians still need to know more about its impact on their patients' well-being, adherence, and behaviors.Subscribe Now for Access
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