Susan Mundt is a registered social worker and is a part of the Community HIV Team (Infectious Diseases Department) at the Auckland City Hospital. As part of her Masters degree, Susan completed a research that provided insight into HIV stigma and discrimination in the healthcare setting. She shares insights from her findings.
Share with us a little about your research and what made you pick the particular subject of stigma?
I have worked in the HIV field for almost 10 years and noticed that, despite the medical advances and the fact that HIV is now a chronic illness, HIV stigma remains a significant issue. I chose the topic of HIV stigma and discrimination in the healthcare setting for my Master’s thesis due to numerous complaints by our patients over the years. Being treated last, being refused treatment, breaches of confidentiality, and excessive infection control precautions are some of the issues that people living with HIV have to endure when accessing healthcare services. I chose a mixed methods approach for my research (both quantitative and qualitative data) so that I could determine how many people living with HIV had experienced discrimination from a healthcare provider, as well as provide them with the opportunity to write stories of their experiences.
What do the findings tell us about HIV related stigma?
The findings of my research showed that of the 213 participants who completed the survey, 47% had experienced HIV stigma and discrimination by a healthcare provider and that many of these experiences had occurred within the last five years. Healthcare settings with the most complaints were GPs, dentists, non-infectious diseases hospital wards and non-infectious diseases outpatient clinics. These results were surprising considering that only 21% of participants of the NZ Futures II study from 2008 indicated HIV discrimination by a healthcare provider, so I expected that this problem would have decreased, not increased.
What do people living with HIV say about stigma – how does it affect their access to health services?
Experiencing HIV stigma in their personal life is extremely upsetting, but it is particularly distressing when healthcare providers – whom they expect to be educated and who should be treating them with acceptance, compassion and respect – discriminate against them. A number of study participants indicated that they constantly worry about disclosing their HIV status to healthcare providers in case discrimination does occur. Those who have experienced HIV discrimination in the past are vigilant in their future encounters with healthcare providers. In fact, a few participants admitted that they had not disclosed their HIV status in order to avoid discrimination, which can have negative consequences for their health. We provide patients with a list of HIV-friendly GPs and dentists in an attempt to mitigate this problem.
What has been the most memorable instance you can share in your work?
The most memorable instances have to do with excessive infection control. For example, a GP told me she wore gloves to shake her newly diagnosed patient’s hand because she was worried that his hands were sweaty. Another example involved nurse on a hospital ward who used double gloves to change a dressing just because the patient had HIV, even though the operation site was clean and dry and the gloved hands were holding tongs to clean the wound. Staff have also written, “HIV positive” in big letters on patients’ charts and put “infectious” stickers on patients’ blood samples. The interesting thing is the patients in these examples were not even aware that discrimination had occurred, as we (Community HIV Team) provided education to the staff member and challenged this behaviour without telling the patient.
In your opinion and observation, how does stigma impact on self-esteem and relationships?
HIV stigma has a significant impact on self-esteem and relationships. One of the most difficult decisions facing people living with HIV is how and when to disclose to family, friends and sexual partners. In addition to fear of rejection, there is the anxiety that their HIV status will not be kept confidential once they do disclose. While many people choose not to disclose to family and friends, there is a moral obligation to disclose to a partner in a committed sexual relationship. The Community HIV Team provides support with disclosure and, although the process of disclosure creates significant anxiety, we have a large number of patients in successful sero-discordant relationships.
We commissioned a small survey recently, which showed people knew the facts about HIV transmission and prevention, but were still fearful about being in a relationship with someone with HIV, even flatting with someone. How would you explain this?
Despite receiving HIV education and assurances that HIV cannot be transmitted through casual contact, people seem to have a visceral reaction to HIV that transcends logic and reason. An often heard refrain is, “Yes, but what if they’re wrong.” This reaction is also exhibited by those living with HIV. Even though they know that HIV is not transmitted through saliva, for instance, I have had a few patients who insist on using their own cups, plates, and cutlery for fear of infecting their family. The myths surrounding HIV transmission appear to be so ingrained that it is difficult to break through that barrier.
Most New Zealanders are not comfortable with HIV and still view it as a fatal illness that is easily transmissible.
What do you think needs to change in order to eliminate, or at least, decrease, HIV-related stigma?
More targeted HIV education is necessary for healthcare providers, but a public education campaign is also vital – something similar to what has been done for mental illness. Another key element to reducing HIV-related stigma is through counselling and peer support, which can hopefully empower people living with HIV to reject the negative beliefs that people hold about them, especially by healthcare providers. It was very encouraging that a few participants in my study demonstrated a willingness to fight against HIV stigma and discrimination in the healthcare setting by demanding their right to be treated the same as any other patient.