Reducing AIDS-related Stigma and Discrimination in Indian Hospitals

This 66-page report explores a hospital-based intervention implemented by Horizons/Population Council and local governmental and non-governmental organisation (NGO) partners in an effort to ensure the provision of non-stigmatising health services to all patients regardless of HIV status. The initiative, which was carried out from 2000 to 2004, emerged in response to evidence - as reported by PLHA and health care workers (HCWs) - of manifestations of stigma and discrimination in India's hospitals such as: unwarranted referrals to other facilities; condescending, judgmental, and moralistic attitudes among staff; segregation and labeling of patients; excessive use of barrier precautions by staff; unconsented HIV testing; inadequate pre- and post-test counseling; withholding of HIV test results from the patient; and unconsented disclosure of test results to family and non-treating staff. Fear of such poor treatment may cause many people living with HIV/AIDS (PLHA) to avoid seeking critical health care, the authors argue.

To address these issues, Horizons, SHARAN (an Indian NGO), and the Institute of Economic Growth collaborated with India's National AIDS Control Organization (NACO) and 3 New Delhi hospitals; "problem solving by partnership" was the key communication strategy used to develop tailored interventions to protect the interests and well-being of both patients and staff. The approach was multi-sectoral, and characterised by participatory research and the involvement of all levels of staff in intervention activities, from ward staff to hospital superintendents. Specifically, central to the design of each hospital's response to the problem of AIDS-related stigma and discrimination was the use of a self-assessment checklist which identifies institutional strengths and weaknesses of services for people living with HIV, and of policies and procedures to prevent occupational exposure to HIV by staff. (Click here to view the complete checklist.)

Based on the assessment, hospital managers and senior staff developed action plans to address programme and policy gaps. Each action plan varied by hospital, but included:

• the development and dissemination (following discussion and question-and-answer sessions) of simply-worded, printed guidelines for HIV care and management
• sensitivity training of health workers about the needs and rights of people with HIV (led by local AIDS NGOs in 2-hour sessions on alternate days over a period of 2 weeks), which drew on participatory training methods, such as discussions, group exercises, quizzes, games, role plays, and field visits
• expansion and strengthening of HIV testing and counseling services
• development and dissemination of educational material (posters) on infection control procedures and post-exposure prophylaxis (PEP) following "field-testing" with a small group of hospital staff

A key strategy for making this process work was addressing fears on the part of hospital managers that data about discrimination would be used for lawsuits and negative publicity, and complaints that AIDS NGOs tended to blame health workers for stigmatizing or discriminatory practices. In response, researchers "assured the hospitals that the data would be confidential and not reported by hospital, and sensitized NGO staff about the concerns and difficulties of health workers who practice in resource-constrained settings." The authors suggest that "Groups and organizations wishing to work in health care settings should consider positioning themselves as true partners rather than as critics if their goal is to improve the health care environment for PLHA."

The findings of the knowledge, attitudes, and practices (KAP) survey indicate that the multi-sectoral, participatory in-hospital intervention had a significant impact on reaching out to HCWs with regard to the problem of stigma and discrimination within their institutions. Selected findings include:

• Knowledge - Overall, there were large increases in the understanding of HIV transmission by health workers. For example, there was a significant increase in the number of ward staff who reported that HIV cannot be transmitted by touching someone with HIV or AIDS (from 81% to 96%). Health workers reported improved understanding and practice of universal precautions and infection control procedures (e.g., using gloves whenever drawing blood or starting an IV on a patient). Hospital managers corroborated positive changes in knowledge.
• Attitudes - The study also found improvements in health workers' attitudes toward PLHA and less support for discriminatory hospital practices. To measure these domains, the researchers developed a 21-item stigma index, which was incorporated into the baseline and follow-up surveys. One of the questions asked whether the respondents agreed or disagreed that HIV spreads due to immoral behaviour; another asked whether patients with HIV should be kept at a distance from other patients. Overall, the proportion of health workers who were categorised as being the least stigmatising more than doubled after the intervention (from 12% to 27%), and the proportion of respondents in the most stigmatising category declined considerably (from 24% to 7%). Fewer nurses and ward staff agreed that there was a need to take excessive measures such as burning linens used by HIV-positive patients. Following the interventions, doctors were more likely to agree that patients should not be tested without their consent (67% vs. 37%). However, "many health care workers continued to feel that they were entitled to know the HIV status of their patients and to share this information with one another even as they expressed increased respect for patient privacy in general. More work is therefore needed to translate changes in attitudes to changes in practices."
• Practices - "About three or four years back, we had an HIV-positive patient....The ward staff sprayed DDT [a pesticide] all around the patient's bed so that the virus would not spread. Now these things do not happen." Doctors were also more likely to seek informed consent the last time they ordered an HIV test (59% vs. 40%). Further, "Upon reviewing the baseline survey data, the managers, many of whom were previously reluctant to acknowledge problems, set and achieved action plan goals..." - implemented in the form of interventions as described above.

A series of recommendations are provided; among them: it is important for programmes to reach out to all levels of HCWs with initial and ongoing refresher training which goes beyond providing information to include sensitising staff to the needs, concerns, and rights of PLHA, on the other. However, because HCWs have been found to perceive themselves to be at high risk of infection, "training alone may not have the desired impact on health care workers' attitudes and practices if they do not perceive environment within which they work to be safe to implement their newly acquired knowledge and skills." Thus, it is necessary to create and enforce policies that ensure the availability of essential supplies (e.g., gloves, post-exposure prophylaxis) for maintaining optimum infection control practices by health care workers at all times.

The successful results of the study encouraged the collaborating hospitals in New Delhi to scale up the intervention hospital-wide to all departments and staff. NACO endorsed the use of the checklist in all public hospitals and disseminated it to all the State AIDS Control Societies in the country. The intervention tools are being adapted for other countries' use, as well.

Click here for the full resource in PDF format.

Click here for an 8-page research summary in PDF format.