The Well Project Launches Your Voice Counts: 2016 User Survey Report
March 10, 2017 - Brooklyn, NY. The Well Project, a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic though a unique and comprehensive focus on women and girls, today announced the launch of Your Voice Counts: The Well Project 2016 User Survey Report, an analysis of the organization’s reach and impact on women living with HIV (WLHIV). The survey demonstrates that The Well Project's programming has a significant impact on the lives of WLHIV, including on their engagement in HIV care and a number of quality of life indicators. The Well Project is releasing the report today in conjunction with National Women and Girls HIV/AIDS Awareness Day, an annual, national observance that highlights the impact of HIV/AIDS on women and girls.
Your Voice Counts is the latest in a series of surveys and research that The Well Project has undertaken in order to ensure it is maximizing its effectiveness and strengthening the impact of its programs. This survey is framed in the context of the HIV continuum of care, which charts the progression of individuals and populations from HIV testing through engagement in care, antiretroviral treatment uptake and adherence, and ultimately, viral suppression. The report also describes the need to expand notions of optimal outcomes beyond viral suppression to include measures of broader health and quality of life.
"This report validates The Well Project's goal of addressing the whole woman," said Krista Martel, executive director of The Well Project. "Over the past several years, we have witnessed a pattern of personal growth and progress among many women living with HIV as they engage with our resources. Reading our blogs about the experiences of women who have overcome their own HIV stigma provides other women with a sense of hope as they realize they are not alone. Frequently, they then become more engaged with other women in our community, and experience improved self-esteem and less self-stigma. Empowered by the knowledge and advocacy tools they access at The Well Project, women often begin to better advocate for themselves and others living with HIV. While this process can take place over months or even years, it speaks to the enormous effect and potential The Well Project has to improve the lives of women living with HIV around the world."
Given that WLHIV are the primary constituency of The Well Project, the bulk of the survey analysis focuses on this group of respondents. These WLHIV survey respondents (n=136) were diverse in age and racial/ethnic background; were well-educated, but underemployed and of low-income; were highly engaged in their care; reported experiencing HIV stigma; reported high incidence of trauma and other mental, emotional, and behavioral health issues; and benefited from participating in clinical trials.
Survey users identified their top three goals in using The Well Project's resources:
- To increase their knowledge of HIV and its treatments
- To improve their health outcomes
- To become more empowered advocates for themselves
Importantly, 70 percent of respondents indicated that The Well Project's resources made them feel more knowledgeable about HIV.
"As a long-time user of The Well Project's resources and as a representative for the organization, I’m not at all surprised by the survey findings," said Maria Mejia, global ambassador and community advisory board member for The Well Project and blogger for A Girl Like Me and Una Chica Como Yo, The Well Project's blogs for WLHIV. "Through A Girl Like Me, The Well Project gave me a platform to share my experiences as a long-term survivor of HIV, which not only helped me in my journey, but allowed me to reach thousands, if not millions, of people living with HIV around the globe. I’ve seen so many women who come to The Well Project feeling isolated and hopeless about their lives as a result of their HIV diagnosis transform into powerful advocates."
Results show that The Well Project's resources affected respondents’ progress along the continuum of care, most notably in improvements in engagement in care. More than three-quarters of WLHIV said they were more likely to communicate well with their healthcare providers; and more than half said they were more likely both to see their healthcare providers and regularly take their medications as prescribed.
Self-care among survey respondents also improved. Nearly three-quarters of WLHIV said that after using The Well Project's resources they were more likely to accept only respectful, caring behavior from friends and loved ones; nearly two-thirds said they were more likely to exercise; and more than half were more likely to both practice safer sex and seek care for mental and emotional issues.
In some of the most important findings of the survey, WLHIV reported significant improvements in their outlook on living with HIV. More than three-quarters of WLHIV felt more hopeful and connected to a community because of The Well Project, and nearly two-thirds reported experiencing less HIV self-stigma and feeling less alone. In addition, more than 80 percent of WLHIV reported being more likely to advocate for themselves and others as a result of their engagement with The Well Project.
"These data are only the most recent in a long line of evidence of the major impact The Well Project is having on women living with HIV," said Judith D. Auerbach, PhD, professor of medicine at the University of California, San Francisco and a member of The Well Project's board of directors. "These periodic surveys are vital to the work we do, as they provide us with important insights into how our resources are being experienced, integrated, and applied by our users. We are hopeful that these data will facilitate additional growth for The Well Project, enabling us to reach even more women around the globe and continue to deepen our impact."
The survey was developed and reviewed by The Well Project staff, consultants, and select members of our board of directors and community advisory board. There were 229 participants in the final sample, 136 of whom were WLHIV. For the full survey, please click here.
The Well Project is a non-profit organization whose mission is to change the course of the HIV/ AIDS pandemic through a unique and comprehensive focus on women and girls. The Well Project has established itself as the premier online resource on women and HIV both nationally and globally, directly reaching more than one million users annually. Focusing on three critical areas related to women and HIV—information access, community support, and advocacy—The Well Project is leveraging technology to dramatically improve health outcomes and quality of life for women and girls living with HIV. The organization accomplishes this work by disseminating accurate, useful, and timely information about HIV; creating and fostering connection and mutual support among women living with HIV; and developing community capacity for advocacy around HIV research, policy, prevention, and care.
For more information, go to www.thewellproject.org.
Together, we can change the tide of the HIV epidemic…one woman at a time.
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