The experiences of stigma and discrimination of male HIV-positive patients when using healthcare are explored in a study in the December 2007 edition of AIDS Patient Care and STDs.
The qualitative research involved 50 HIV-positive men who obtained their HIV care through the US Department of Veterans’ Affairs. Although some of the men reported receiving excellent care, other said that the demenour of healthcare staff made them feel stigmatised. Some patients also reported that they received poorer quality care, were refused care, or were insulted or even assaulted by healthcare personnel because they had HIV.
The investigators hope that their research leads healthcare staff to be more ‘mindful’ of their actions towards HIV-positive patients. They also call for further research to explore behaviour that increases the confidence of HIV-positive individuals in healthcare staff.
It is estimated that there have been over one million cases of HIV in the US. Antiretroviral therapy has transformed the prognosis of many HIV-positive individuals. Progress tackling the stigma that surrounds HIV has not been so rapid. There are still popular misconceptions about the transmission of HIV and stigmatising attitudes towards HIV-infected individuals are highly prevalent.
Stigma can damage the health of HIV-positive individuals and it is therefore particularly troubling that people with HIV often experience discrimination from healthcare staff. Research has found that a quarter of HIV-positive patients in Los Angeles and a third of HIV-positive patients in London experienced stigma or discrimination when using healthcare.
Investigators wished to gain a better understanding of patients’ perceptions and experiences of HIV-related stigma in healthcare settings and designed a qualitative sub-study of a larger investigation into how HIV-positive patients cope with stigma.
A sample of 50 HIV-positive men who received their HIV care at Veterans’ Affairs hospitals in a mid-western city were recruited to the study, which was in two stages. In the first stage the men talked about their experiences of stigma and discrimination in focus groups. The second stage of the study involved in-depth one-to-one interviews.
Mean age of the men was 50 years, 52% were African American, 68% were heterosexual and 32% gay or bisexual. The mean duration of diagnosed HIV infection was six years and 56% had received an AIDS diagnosis.
Several men reported only positive experiences using healthcare facilities and an absence of stigma and discrimination. Others, however, reported behaviour that was either implicitly or explicitly stigmatising or discriminatory.
The investigators initially described behaviour and demenour that patients perceived to convey discomfort, fear, contempt or exclusion on the part of healthcare staff.
This included a lack of eye contact, with one participant commenting that a specialist physician “never looked me in the eye. I still don’t know what his face looks like.”
Some patients reported that the tone of voice implied unease on the part of healthcare staff. Communicating in a brusque, flat or clipped manner was commented upon. One individual explained to the investigators the manner in which a nurse had informed him of his AIDS diagnosis: “It was so callous and cold…she said, ‘You have AIDS.’ And I said, ‘What?’ The way she said, ‘Whenever you go below 200 you got AIDS.’ It was just the coldness in it – there wasn’t no feeling. It’s almost like a stone-faced warden or something. No concern.”
Reluctance by healthcare staff to be in physical proximity to patients was also interpreted as stigmatising by some participants. One man told the investigators he had had a doctor “who wouldn’t even come into the room.”
Standoffish behaviour by receptionists was also reported, and other participants recalled instances when healthcare staff had expressed anger when they’d learnt of their patient’s HIV-infection status. Other times healthcare staff appeared nervous, with one man reporting a “nervous vibe” from his dentist.
Panicked behaviour by healthcare staff was also reported, with one patient telling the investigators of a trip to a hospital emergency department: “As I’m sitting there and we’re talking and [the assistant] comes running over. I could tell it was a big emergency. He says, ‘wait a minute!’ and grabs the manila folder…I can tell what he’s writing across the front…and he’s writing the word, ‘AIDS!.’”
In some instances healthcare staff changed their attitudes or behaviour towards a patient after learning that he was HIV-infected. One patient explained, “I went to this office and the lady asked me what my disability was. When I told her, it seemed like her whole attitude changed.”
Some participants also reported that their healthcare staff took unnecessary precautions. One man said that these made his doctors look like “Roman gladiators!”
Healthcare staff sometimes used language to scare their patients. A participant recalled an encounter with his physician shortly after his diagnosis. The patient asked the doctor what his next step was, the doctor replying “you’re gonna die.”
Other patients reported being mocked by healthcare staff because they were HIV-positive and other patients said that they felt that healthcare staff blamed them for having HIV. An encounter with a phlebotomist was recalled: “She had a really hard time drawing my blood…she kept poking me and I told her it hurt…and she said, ‘if you hadn’t gone and done this to yourself, we wouldn’t have to be going through this!’”
“Patients reported being sensitive health care personnel’s demeanour” comment the investigators. Although this made patients feel “resentful and unsatisfied” it did not always compromise the delivery of healthcare.
But in other instances such stigma did adversely affect healthcare.
One patient reported being repeatedly ignored by his treating physician. He told the investigators “I was here for a week and there was a doctor who was attending. He came into my room – he didn’t say a word to me. When I caught his attention, it was as if I hadn’t said anything.”
Substandard care was also reported, with one patient telling investigators that a dentist had refused to offer adequate anaesthetic because of his “condition.”
Overt stigma and discrimination also took the form of a refusal to provide care. An incident quoted by the investigators once again involved dental care: “Once I went to a county hospital to have a tooth pulled. I guess the dentist was a student or an intern or whatever. He refused to do it once he realised I was HIV-positive. They sent for another doctor.”
It wasn’t just clinical staff who refused to provide services to HIV-positive patients. One individual commented on the behaviour of a cleaner: “I was a patient at a Big University Hospital and I don’t know what they put on the door of the room, but a woman who would normally come in and mop up and sweep up, wouldn’t. It was really wild, with her shrieking, ‘I ain’t goin’ in there!’”
Abuse from healthcare staff was also reported, with one patient saying that he was defamed in an attempt to ensure that he received less favourable treatment from other healthcare staff. Another patient told investigators that he was roughly handled by paramedics who had learnt he was HIV-positive.
“These findings offer healthcare personnel a tangible list of behaviors what should either be avoided or further explained to HIV-positive patients, as they may be interpreted as stigmatising,” conclude the investigators. They add, “this study reveals that patients are sensitive to such behaviors being performed by a variety of healthcare personnel, indicating the need for all such personnel to be mindful of their actions towards these patients.”