India's growing HIV/AIDS pandemic is putting more pressure on hospitals to provide improved levels of care, but prejudice among medical staff against HIV-positive people is keeping those most in need away, according to a recent report.
'Reducing AIDS-related Stigma and Discrimination in Indian Hospitals', is being viewed with interest by policy makers and practitioners in India, as stigma and discrimination against people living with the virus threaten to derail official efforts to contain the epidemic.
The study was conducted by HORIZONS, a global research programme affiliated with the Population Council, a US-based reproductive health nongovernmental organisation (NGO), in conjunction with SHARAN, an Indian NGO, and the Delhi-based Institute of Economic Growth.
Researchers spoke to doctors, nurses, hospital administrators, managers and people living with HIV and AIDS and their caregivers at one private and two state-owned hospitals in the capital, New Delhi, between 2002 and 2004.
In one interview, a doctor is quoted as saying, "High-risk population means lower class people - they live in slums, in unhygienic conditions; they sleep with anybody and everybody, extramarital affairs are common, and also drug users and sex workers come into this category." Another doctor commented, "There is a separate bed which is earmarked for an HIV-positive patient, and I see to it that it is not used by any other patients."
Several people living with HIV and AIDS who participated in the study said their common experience was denial of care, delay in treatment and multiple referrals.
"The doctor refused to examine me for almost two months - he even stopped doing my dressing. He just told me to continue with my medicines. He also referred me to another hospital for an operation that he would not do, as it would be too costly for me," one HIV-positive respondent told the researchers.
There were mixed reactions among staff regarding counselling and testing practices. Nurses at one hospital said mandatory testing was carried out, especially for those requiring surgery or invasive procedures, but doctors did not ask for consent and the patient was not provided with professional counselling, as there was no trained HIV/AIDS counsellor in the hospital. They commented that many patients would not have been able to understand the form, or would have refused to be tested if they had been asked.
Much of the discrimination was due to inherent prejudices against those infected with HIV, but the difference in treatment given to people living with the virus also stemmed from a lack of knowledge and inadequate institutional support for infection control.
Although the infection control committees in each of the hospitals had guidelines, and the staff had undergone training, their knowledge was often outdated.
"New knowledge about safeguarding staff was not always shared with all staff members. For example, the staff interviewed had low awareness about post-exposure prophylaxis (PEP) and its potential to reduce the risk of infection following potential exposure to HIV. Most of the staff interviewed were not aware if PEP was available in their hospital or how to access it," the report said.
The findings have raised concerns about patients being tested for the HI virus without giving informed consent.
"Guidelines by NACO [National AIDS Control Organisation] are clear. Doctors have to explain the issues to a person before he/she can be tested for HIV. Testing cannot be done unless he/she agrees," said Arti Malik, advocacy officer at the Lawyer's Collective HIV/AIDS Unit, an Indian legal aid group.
Malik pointed out that fear prevented more instances of hospital discrimination against HIV-positive people from coming to light. "We are willing to take up the cases, but not too many HIV-positive people are willing to take a government institution to court on grounds of stigma and discrimination. We have much anecdotal evidence, such as a recent case of an HIV-positive pregnant woman who was denied a bed in a government hospital in Delhi and who slept on the floor. The child died but the woman did not file a case. Instead, she went back to her village."
The findings were also used in pilot approaches to motivating hospitals to become more caring towards HIV-infected people. For example, a PLHA-friendly Checklist' (people living with HIV and AIDS) was developed as a self-assessment tool for hospital managers to identify institutional strengths and weaknesses in services for HIV-positive people, and evaluate hospital policies and procedures to protect staff from the risk of exposure to HIV. Hospitals were then assisted to develop 'action plans' to improve the situation.
After the pilot intervention, "doctors were more likely to agree that patients should not be tested for HIV without their consent. They also were more likely to seek informed consent ... [when] they ordered an HIV test" the report noted. After the pilot project a greater proportion of doctors and nurses said HIV-positive individuals had the right to decide who should know their status, but this was not the case among ward staff.
HORIZON's Vaishali Mahendra hoped the findings would have a significant impact in public hospitals. India's National AIDS Control Organisation, for example, has endorsed the PLHA-friendly Checklist to be used in all public hospitals, and the report has been disseminated to all the State AIDS Control Societies in the country.
'Reducing AIDS-related Stigma and Discrimination in Indian Hospitals', is being viewed with interest by policy makers and practitioners in India, as stigma and discrimination against people living with the virus threaten to derail official efforts to contain the epidemic.
The study was conducted by HORIZONS, a global research programme affiliated with the Population Council, a US-based reproductive health nongovernmental organisation (NGO), in conjunction with SHARAN, an Indian NGO, and the Delhi-based Institute of Economic Growth.
Researchers spoke to doctors, nurses, hospital administrators, managers and people living with HIV and AIDS and their caregivers at one private and two state-owned hospitals in the capital, New Delhi, between 2002 and 2004.
In one interview, a doctor is quoted as saying, "High-risk population means lower class people - they live in slums, in unhygienic conditions; they sleep with anybody and everybody, extramarital affairs are common, and also drug users and sex workers come into this category." Another doctor commented, "There is a separate bed which is earmarked for an HIV-positive patient, and I see to it that it is not used by any other patients."
Several people living with HIV and AIDS who participated in the study said their common experience was denial of care, delay in treatment and multiple referrals.
"The doctor refused to examine me for almost two months - he even stopped doing my dressing. He just told me to continue with my medicines. He also referred me to another hospital for an operation that he would not do, as it would be too costly for me," one HIV-positive respondent told the researchers.
There were mixed reactions among staff regarding counselling and testing practices. Nurses at one hospital said mandatory testing was carried out, especially for those requiring surgery or invasive procedures, but doctors did not ask for consent and the patient was not provided with professional counselling, as there was no trained HIV/AIDS counsellor in the hospital. They commented that many patients would not have been able to understand the form, or would have refused to be tested if they had been asked.
Much of the discrimination was due to inherent prejudices against those infected with HIV, but the difference in treatment given to people living with the virus also stemmed from a lack of knowledge and inadequate institutional support for infection control.
Although the infection control committees in each of the hospitals had guidelines, and the staff had undergone training, their knowledge was often outdated.
"New knowledge about safeguarding staff was not always shared with all staff members. For example, the staff interviewed had low awareness about post-exposure prophylaxis (PEP) and its potential to reduce the risk of infection following potential exposure to HIV. Most of the staff interviewed were not aware if PEP was available in their hospital or how to access it," the report said.
The findings have raised concerns about patients being tested for the HI virus without giving informed consent.
"Guidelines by NACO [National AIDS Control Organisation] are clear. Doctors have to explain the issues to a person before he/she can be tested for HIV. Testing cannot be done unless he/she agrees," said Arti Malik, advocacy officer at the Lawyer's Collective HIV/AIDS Unit, an Indian legal aid group.
Malik pointed out that fear prevented more instances of hospital discrimination against HIV-positive people from coming to light. "We are willing to take up the cases, but not too many HIV-positive people are willing to take a government institution to court on grounds of stigma and discrimination. We have much anecdotal evidence, such as a recent case of an HIV-positive pregnant woman who was denied a bed in a government hospital in Delhi and who slept on the floor. The child died but the woman did not file a case. Instead, she went back to her village."
The findings were also used in pilot approaches to motivating hospitals to become more caring towards HIV-infected people. For example, a PLHA-friendly Checklist' (people living with HIV and AIDS) was developed as a self-assessment tool for hospital managers to identify institutional strengths and weaknesses in services for HIV-positive people, and evaluate hospital policies and procedures to protect staff from the risk of exposure to HIV. Hospitals were then assisted to develop 'action plans' to improve the situation.
After the pilot intervention, "doctors were more likely to agree that patients should not be tested for HIV without their consent. They also were more likely to seek informed consent ... [when] they ordered an HIV test" the report noted. After the pilot project a greater proportion of doctors and nurses said HIV-positive individuals had the right to decide who should know their status, but this was not the case among ward staff.
HORIZON's Vaishali Mahendra hoped the findings would have a significant impact in public hospitals. India's National AIDS Control Organisation, for example, has endorsed the PLHA-friendly Checklist to be used in all public hospitals, and the report has been disseminated to all the State AIDS Control Societies in the country.
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