For many PLWHA, AIDS-related fear and anxiety, and at times denial of their HIV status, can be traced to traumatic experiences in health-care settings. Instances of delay and denial of care have even led AIDS-service organisations to file lawsuits against hospitals for neglect and mistreatment. A 2003 newspaper article reported that 90% of doctors in Tamil Nadu refuse to treat PLWHA.

Research has shown that stigma and discrimination in hospital settings go beyond delays in treatment and denial of care to include unwarranted referral to other facilities, segregation on wards, labelling of patients' beds and files, HIV testing without consent, and disclosure of HIV status without consent to family members, employers, non-treating health workers, and other patients. In one famous case, blood donated by a man for a friend in need of a transfusion was tested for HIV. When the result showed that he was HIV-positive, the hospital informed his employer and family without telling him, and he was fired from his job and ostracized by his family and community.

What is behind these discriminatory practices? Research carried out in three New Delhi hospitals by the Horizons Programme and SHARAN (Society for Service to Urban Poverty), a local AIDS NGO, found prejudices among health workers against PLWHA and patients they considered at risk for HIV. It also revealed that health workers had incomplete knowledge about HIV transmission and were fearful about contact with blood-borne pathogens, including HIV and hepatitis. Especially junior staff had never received training in infection control, despite widespread concerns about infection and exposure to medical waste.

Dealing with hospital-based stigma and discrimination

This intervention emphasised collaboration across sectors among NGOs, private and government hospitals, research organisations and NACO. For example, hospital managers invited NGOs to facilitate HIV/AIDS sensitisation training for health workers at all levels. Educational materials with clear visual imagery were printed in the local language to reach all staff, particularly those with limited literacy. Participatory approaches were used during research and intervention. Health workers were actively involved in critiquing and improving educational materials, policy guidelines and a sensitisation training curriculum. Managers used the data to improve the hospital environment for HIV-infected patients.

There were a number of challenges along the way. At first, hospital managers hesitated to acknowledge stigma and discrimination, despite widespread publicity. Some managers were willing to participate in the programme, but concerned about being "flooded by PLWHA" and losing their non-PLWHA clients. In addition, significant mutual distrust between the health-care sector and AIDS NGOs had to be overcome. Finally, the intervention hospitals were very large, with many beds and bureaucratic structures, hampering quick changes. Nevertheless, collaboration and progress proved to be possible.

Evidence of change

The action plans varied per hospital, but resulted in important institutional changes, such as:

Once the action plans were implemented, a follow-up survey was conducted to assess their impact on stigma and discrimination. Overall, health workers expressed greater respect for patient and PLWHA rights, and practiced improved testing and infection-control procedures. For example, doctors were significantly more likely to state that informed consent must be received prior to HIV tests (37% at baseline vs. 67% at follow-up); arrange pre-test counselling prior to the HIV test (35% vs. 52%), always inform patients of their HIV-positive test results (54% vs. 76%); wear gloves for at-risk procedures (63% vs. 73%) and less likely to inform ward staff of HIV-positive patients admitted in the ward/department (51% vs. 29%).

Lessons learned

Effective reduction of stigma and discrimination in the health sector requires a partnership approach by government, private non-profit and research groups. Before the intervention, hospital managers feared that data about stigma and discrimination could be used for lawsuits and negative publicity; on the other hand, AIDS NGOs tended to blame health workers for stigmatising or discriminatory practices. Both groups needed to be convinced of the need to collaborate.

Furthermore, in addition to attitude change, information, training and supplies, and hospital guidelines are equally important for reducing AIDS-related stigma and discrimination by health workers, as many lack adequate knowledge and training in the basics of HIV transmission, infection control, and clinical management of HIV/AIDS. It is also essential to involve all levels of health workers, from ward staff to hospital superintendents, rather than simply trying to effect change from the top down.

Finally, participatory methods and access to facility-specific data were critical in mobilising hospital managers to take action to reduce stigma and discrimination.

There are indications that the products developed by the intervention will be tested in other parts of India. NACO intends to disseminate the PLWHA-friendly checklist in all government hospitals. Other organisations throughout India have requested copies of the checklist, the health-worker curriculum, and educational materials for use in other settings. Last but not least, Horizons aims to replicate the intervention study in higher HIV-prevalence areas in India.