Your Voice Counts: The Well Project 2016 User Survey

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Have you ever wondered what role technology can play in the fight against HIV? The belief that technology has the potential to radically alter the course of the HIV epidemic underscores the work that we do at The Well Project every day. We leverage technology to dramatically improve health outcomes and quality of life for women living with HIV (WLHIV) by focusing on information access, community support, and advocacy. And if you’re looking for proof that this approach works, we are thrilled to present Your Voice Counts: The Well Project 2016 User Survey Report, an analysis of The Well Project’s reach and impact on women living with HIV. This is the latest in a series of surveys and research to ensure we are maximizing The Well Project’s effectiveness and strengthening the impact of our programs. Surveys help us understand how our online resources and programs are experienced, integrated, and applied.

The survey demonstrates that The Well Project’s programming has had a significant impact on the lives of women living with HIV (WLHIV), including on their engagement in HIV care and a number of quality of life indicators:

  • Increased knowledge: 70% said The Well Project’s resources made them feel more knowledgeable about HIV
  • Increased engagement in healthcare: More than 3/4 of respondents said using The Well Project’s resources made them  more likely to communicate well with their providers and more than half said they were more likely to both see providers regularly and take their medications as prescribed 
  • Improved self-care: Nearly 3/4 of WLHIV reported that they were more likely to accept only respectful behavior, nearly 2/3 were more likely to exercise, and more than half were more likely to practice safer sex and seek care for mental and emotional issues as a result of using The Well Project’s resources
  • Improved outlook on living with HIV: More than 3/4 of respondents felt more hopeful because of The Well Project and nearly 2/3 reported less HIV self-stigma

Your Voice Counts also demonstrates that there is more to the health, well-being, and quality of life of people living with HIV than merely achieving an undetectable viral load. Attention to behavioral health, social support systems, and environmental conditions is equally important for many of our respondents.

 

Survey Participants: There were 229 participants in final sample, 136 of whom were WLHIV. Because WLHIV are our primary constituency, we focused most of our findings on them. Overall, WLHIV survey respondents: 

  • 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 (nearly 1/2 in a healthcare setting, nearly 2/3 outside the healthcare setting)
  • Reported high incidence of trauma and other mental, emotional, and behavioral health issues
  • Benefited from participating in clinical trials

Your Voice Counts was developed and reviewed by The Well Project staff, consultants, select board of directors and Community Advisory Board members. 

Click here to download a PDF of the full survey report. 

      

Click here for the press release announcing the launch of the report

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Jennifer Johnsen, MD, MPH, Managing Editor

Pain is common in people living with HIV. Understand common types of pain, what to do if you have pain, and ways to manage or treat pain.

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