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Abstract
AIDS-related stigma and discrimination remain pervasive problems in health care institutions worldwide. This paper reports on stigma-related baseline findings from a study in New Delhi, India to evaluate the impact of a stigma-reduction intervention in three large hospitals. Data were collected via in-depth interviews with hospital staff and HIV-infected patients, surveys with hospital workers (884 doctors, nurses and ward staff) and observations of hospital practices. Interview findings highlighted drivers and manifestations of stigma that are important to address, and that are likely to have wider relevance for other developing country health care settings. These clustered around attitudes towards hospital practices, such as informing family members of a patient's HIV status without his/her consent, burning the linen of HIV-infected patients, charging HIV-infected patients for the cost of infection control supplies, and the use of gloves only with HIV-infected patients. These findings informed the development and evaluation of a culturally appropriate index to measure stigma in this setting. Baseline findings indicate that the stigma index is sufficiently reliable (alpha = 0.74). Higher scores on the stigma index – which focuses on attitudes towards HIV-infected persons – were associated with incorrect knowledge about HIV transmission and discriminatory practices. Stigma scores also varied by type of health care providers – physicians reported the least stigmatising attitudes as compared to nursing and ward staff in the hospitals. The study findings highlight issues particular to the health care sector in limited-resource settings.To be successful, stigma-reduction interventions, and the measures used to assess changes, need to take into account the sociocultural and economic context within which stigma occurs.
La stigmatisation liée au SIDA et la discrimination restent toujours des problèmes qui se répandent partout dans des établissements de soins dans le monde entier. Cette communication porte sur des résultats de référence d'une étude liée à la stigmatisation faite à New Delhi, en Inde avec le but d'évaluer l'impact de l'intervention qui cherche à réduire la stigmatisation dans trois grands hôpitaux, Des données ont été recueillies par le biais des entretiens profonds auprès du personnel hospitalier et de patients vivants avec le VIH, des études auprès du personnel de l'hôpital (n = 884 médecins, infirmiers et personnel de services) et l'observation des habitudes hospitalières. Les résultats des entretiens ont souligné les tiges d'entraînement et des manifestations de la stigmatisation qui doivent absolument être abordés et qui pourraient avoir une pertinence étendue à d'autres situations de soins dans des pays en voie de développement. Ces derniers se sont regroupés autour des attitudes envers les habitudes hospitalières à savoir : informer la famille du patient de la séropositivité de celui-ci sans son accord, bruler les draps et les couvertures des patients séropositifs, faire payer pour les approvisionnements contre l'infection et l'utilisation des gants uniquement pour des patients du VIH. Ces résultats ont guidé le développement et l'évaluation d'un indicateur culturellement convenable afin de mesurer la stigmatisation dans ce cadre.Les résultats de référence montrent que l'indicateur de stigmatisation est suffisamment fiable (alpha = 0,74). Les chiffres les plus élevés de l'indicateur de stigmatisation – qui mettent au point les attitudes envers les personnes séropositives – étaient associés à une connaissance erronée de l'infection au VIH et les habitudes discriminatoires. Les résultats de stigmatisation étaient différents suivant le type de personnel de santé – les médecins montraient des attitudes de stigmatisation les plus basses en comparaison aux infirmiers et le personnel de services dans les hôpitaux. Les résultats de cette étude soulignent des sujets du secteur de soins propre aux cadres à ressources limitées. Afin de réussir, les interventions visant la réduction de stigmatisation et les mesures utilisées pour évaluer les changements doivent prendre en considération le contexte socioculturel et économique dans lequel la stigmatisation a lieu.
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Notes on contributors
Vaishali Sharma Mahendra
Vaishali Sharma Mahendra has been working in the field of public health for 15 years. She is currently working with the Population Council in India as a Senior Program Officer where over the past 9 years she has been involved in developing and conducting operations research on social and behavioral dimensions of HIV prevention and care and linkages with sexual and reproductive health. She was one of the lead investigators for the Stigma Reduction operations research study. After earning her Masters' degree in Child Development, she started her career with CARE India where she was responsible for coordinating research activities to inform development and implementation of the reproductive and sexual health programs for women and adolescents.
Laelia Gilborn
Laelia Gilborn, MPH (Tulane), worked with the Population Council for nine years focusing on HIV/AIDS-related stigma and on orphans and vulnerable children. She was one of the lead investigators for the Stigma Reduction operations research study. Since leaving the Council, she has worked as a consultant for Save the Children and other groups. Currently, she is earning a Masters' in Social Work at Catholic University, USA.
Shalini Bharat
Shalini Bharat, a Ph.D. in Psychology, is Professor and Dean, School of Health Systems Studies,Tata Institute of Social Sciences, Mumbai, India. She teaches and conducts research on health reforms, social aspects of health, HIV epidemic, reproductive and sexual health, gender and equity in health, and family studies. Her work on the HIV epidemic has contributed to a greater understanding of the household and community responses to the epidemic in India, its gender dimensions, the linkages of the epidemic with reproductive health issues, stigma and discrimination, and the structural vulnerabilities to HIV.
Rupa Jakharia Mudoi
Rupa Jakharia Mudoi has 9 years of experience in implementing and managing social science research, policy analysis, monitoring and evaluation of projects in the field of reproductive health, education and HIV/AIDS. She is currently Senior Program Manager in the Lawyers Collective HIV/AIDS Unit in the Bangalore office in India. After her M Phil degree in Sociology, Rupa worked with SHARAN as the Research Coordinator for the Population Council/Horizons collaborative study on reducing stigma and discrimination in hospital settings. She has also worked on coordinating and undertaking research activities in sexual health and education in New Delhi and in Bangalore.
Indrani Gupta
Indrani Gupta is Professor and Head of the Health Policy Research Unit of the Institute of Economic Growth, Delhi, India. She received her PhD in Economics from the University of Maryland, USA, and has worked extensively on issues around demand for health and health care, health insurance and financing, costing and cost-effectiveness, economics of HIV/AIDS, poverty and health, and implications of global agreements on the health sector in India.
Bitra George
Bitra George worked with SHARAN as the Principal Investigator of the Stigma Reduction operations research study from its inception in 2000 to 2002. A Clinical Specialist in Skin, STI and Leprosy by training, Dr George has more than a decade of experience in sexual health and HIV/AIDS programs in India. Specifically Dr George has extensive program and research experience in OVC, care, treatment and support, voluntary counseling and testing, reproductive and sexual health and HIV-related stigma issues. Dr George is currently the Deputy Country Director of the India Country Program in Family Health International he has been instrumental in scaling up projects funded by USAID and the Bill & Melinda Gates Foundation.
Luke Samson
Luke Samson is the founder and director of SHARAN, a nongovernmental organization (NGO) that works with the urban poor in New Delhi and also runs HIV-prevention programs for injecting drug users, sex workers, and the homeless. He has played a key role in harm-reduction movement in India and is also an executive member of the Asian Harm Reduction Network. He is also one of the leading advocates for improving HIV-infected people's access to treatment, care and support. Samson has provided technical assistance to various agencies including the government in several countries over the past few years to develop program strategy, training, research and implementation on harm reduction and HIV/AIDS prevention and care.
Celine Costello Daly
Celine Costello Daly is a public health specialist in HIV/AIDS and STI with 14 years of experience in Asia and Africa. Currently, she is the Director, Technical Support, Public Health Programs in the Asia Pacific Regional Office of Family Health International where she is responsible for developing the regional technical strategy. Before joining FHI, she worked with Population Council in India to manage the Horizons country program. She has also served as HIV/STI advisor for John Snow, Inc. in Malawi. In addition, Dr. Daly has consulted with international NGO's, governments, and donors to provide technical assistance and lead in training, guidelines development, proposal development, research, monitoring and evaluation in Bhutan, India, Nepal, and Malawi. She has an MD from SUNY Upstate Medical Center in New York State and an MPH from Harvard School of Public Health.
Julie Pulerwitz
Julie Pulerwitz, ScD, conducted work in Brazil during her time as Research Director of the Horizons Program/Population Council, a 10-year (1997–2007) global HIV/AIDS operations research program funded by PEPFAR via USAID. Dr. Pulerwitz has recently taken on the role of Director of the HIV/AIDS & TB Global Program at PATH. In addition to managerial responsibilities, her main areas of research and program development include HIV/STI prevention, behavior change communication, gender and male involvement, HIV-related stigma, migration issues, and indicators development. Dr. Pulerwitz is trained as a behavioral scientist, and received her masters and doctoral degrees from the Harvard School of Public Health, as well as a graduate degree from the University of Buenos Aires School of Public Health. She has been working in the field for over a dozen years.
