Stigma and discrimination practised by health care workers

“It can be subtle or overt. Evident in passivity or aggression, in the words said or left unspoken. No matter what the guise is, stigma and discrimination (S&D) hurt. The most extreme side of S&D is people living with HIV/AIDS (PLWHAs) discriminating against themselves because they have internalised the negative images projected by the health care provider. “I have seen people remove themselves from employment.  They have not even waited for someone to discriminate against them. They’ve actually fired themselves because of false information or the person giving them a sense of hopelessness or creating a myth that they are a danger to the public in some way,” said Dr Amery Browne, Technical Director at the Secretariat, supporting the National AIDS Coordinating Committee.

Browne said some PLWHAs remove themselves because they think they are a danger to society, such as the fisherman who stopped working although he was the sole breadwinner for his family. He thought  that people who ate the fish he caught would be at risk. PLWHAs may isolate themselves from family, friends, social interactions because they have internalised the negativity they experienced. “Anytime they interact with the health care provider or agency, it can be an opportunity to reduce these types of terrible manifestations or increase the risk of people responding in this way.” Browne said S&D in the health care setting decreases the likelihood of people coming forward for testing and those who do are unlikely to inform their partner if the test result is not given properly. Access to care is reduced when PLWHAs believe they will not be treated in a dignified manner. “It increases the chance of the disease getting worse, the spread of infection and them becoming a burden on their family.”

The consequences extend further. S&D discourages members of the public from getting involved and a culture of silence is perpetuated. Browne said when the right example is not set by health care personnel, people in the community who can become informal caregivers will be reluctant to come forward. S&D can also be passive in people who know better and are in positions of influence not speaking out about HIV/AIDS. Browne said a “key” time for the patient is diagnosis. Their response is dependent on different factors: background, if the result was a surprise or expected, how and when the result is given, confidentiality, the presence of a relative. Patients who receive counselling, have support and are given their test results in the right way “do better” after diagnosis. “Just from that one interaction, others embark on a course of depression and despair which has negative emotional, mental and physical consequences,” Browne said. Breaches of confidentiality have been a common occurrence since HIV appeared on the scene.

Dr Browne said there are many reasons for this. The health care environment (limited space, thin walls) may not be conducive to confidentiality. The way results are processed and whose hand this information falls into also have the potential for breaches of confidentiality. Browne said some health care workers believe they are doing good by telling others about a patient’s HIV status. “This is really based on misinformation because HIV has given many people a sense of powerlessness. People out there, including health workers are afraid. They respond to fear in different ways.” By disclosing a patient’s HIV status, the health worker may actually be creating an environment which may foster the spread of the epidemic. Trust is an important factor in the relationship between the doctor/nurse and patient. Trust can be shattered if the patient detects negativity and is treated in a “hands- off” manner. Irreparable damage can be done to the relationship. 

Browne said a course can be set for disaster with the end result being drug-resistant HIV. “Patients who are non-compliant, who do not trust what the health care provider imparts to them, and who do not take their medication properly can end up with drug-resistant HIV which is a Public Health disaster.” The experience for PLWHAs has not been all negative. Browne said there are many examples of health care workers who have lived up to their names in providing care in a caring and compassionate manner, they range from administrators to doctors to nurses, nursing assistants, medical orderlies, pharmacists and others.