Launched in 2008, the People Living with HIV (PLHIV) Stigma Index project is designed to increase the understanding of how stigma and discrimination are experienced by PLHIV. A key aspect of the PLHIV Stigma Index is that it is used by, and for, PLHIV. The interviewers are PLHIV who receive in-depth training on survey administration and the findings are used to improve the lives of PLHIV through the reduction of stigma. The findings can highlight successful practices and identify areas of need. The index covers such areas as experiences related to stigma and discrimination, protection of the rights of PLHIV, and stigma/discrimination related to HIV testing, disclosure, and the provision of health care.
The PLHIV Stigma Index was developed by several international organizations, including the Global Network of People Living with HIV and the International Community of Women Living with HIV/AIDS. As a member of both organizations, Deloris Dockrey (currently Clinical Director at the Hyacinth AIDS Foundation in New Jersey) was involved in the development of the index, which has been used in over 90 countries.
As a former member of the New Jersey HIV/AIDS Planning Group (NJHPG) and chair of the organization's Stigma Work Group, she was instrumental in introducing the PLHIV Stigma Index to the state of New Jersey. She and Dwight Peavy (Executive Director of the Newark Metropolitan Area/HIV Health Services Planning Council and project coordinator for the study) have worked with Dr. Ann Bagchi of Rutgers University's School of Nursing to roll out the index statewide. Supported with funding from the New Jersey Department of Health (NJ DOH), 30 interviewers have been trained and are currently administering the index across all 21 New Jersey counties. While the focus of the index is gaining information, there are also other benefits.
"The project also builds the skills of the interviewers," says Deloris. "They received extensive training."
The HIV Stigma Index is in use in other jurisdictions in the United States. However, New Jersey is unique because it has implemented the index statewide. Findings will be used to develop a white paper with recommendations on how to address stigma.
"We are taking a statewide sample and the findings will give us insight into what is happening in different areas and with different sub-groups of PLHIV," says Ann. "That will allow us to tailor interventions to the specific needs of PLHIV and the settings in which stigma occurs."
Another benefit of implementing the HIV Stigma Index statewide is that it has helped strengthen existing partnerships, both at the state level and between agencies. Through his extensive network of contacts, Dwight has been able to coordinate with over 30 agencies to recruit interviewers and interviewees and identify locations for conducting data collection. The project is targeting 380 interviews and has completed over 125 to date.
Deloris will be sharing her experiences in implementing the HIV Stigma Index during various end+disparities Learning Exchange activities.
For more information on the HIV Stigma Index: