Results of a national survey—conducted by people aging with HIV

What matters most as you age with HIV? That’s a critical question that a national research advisory group of long-term survivors of HIV is trying to address.

A survey of long-term survivors was recently conducted by Survivors of HIV Advocating for Research Engagement (SHARE), a community board whose 11 members have been living with HIV for 22–37 years and have had a variety of experiences with healthcare systems and research.

Although “nothing about us without us” is best practice, the inclusion of patient stakeholder voices has not been widely accepted in research studies, and engagement is further limited among older adults living with HIV. SHARE’s goal is to identify issues that matter to the community of long-term survivors in order to inform future research that is patient-centered and is of most relevance to the community.

SHARE’s survey sought responses to three questions relative to aging with HIV: What are the key issues that research should address around HIV and aging? What matters most to people who are aging with HIV? What health outcomes are of most relevance to people aging with HIV?

SHARE members interviewed 37 people from across the country and developed an online survey that drew 267 responses.

Overall, the top five areas for future research community members felt were most important were:

  • finding a cure for HIV
  • managing multiple chronic conditions
  • ensuring health care provider competency
  • polypharmacy
  • improving life expectancy

However, among respondents living with HIV for more than 20 years, their research priorities were somewhat different—ensuring health care providers were competent in managing HIV, disability and healthy aging. Further, cognition emerged as a unique area of concern.

The survey also asked people about their fear of potential long-term side effects of antiretroviral therapies. Ninety percent expressed some fear, indicating this is an important area for future research and a concern that health care providers should address with their patients.

Three of the most commonly expressed issues that matter most with aging were physical health, mental health and quality of life.

The survey also asked people about their fear of potential long-term side effects of antiretroviral therapies.

One theme that emerged from the interviews was that caregiving and care planning are vital issues that matter to people aging with HIV. Respondents noted the absence of family, the fact that same-sex adoption was not legal until 2016 and so many people with HIV are childless, and that many friends were also experiencing the same HIV and aging-related issues as all contributing to the lack of having an established personal care network. Community members also acknowledged the desire to age in their own homes and avoid going into a nursing home or other facility that would be expensive, while also raising concerns over stigma from healthcare providers and other residents.

Results from this community needs assessment point to the need for more services and care that address the dual challenges of HIV and aging, determining caregiving needs, figuring out accessible and affordable retirement housing, discussing financial management and maintaining quality of life.

Finally, this work confirms that “mental health” is not just a buzzword. The findings show that there is a real and pressing issue with depression, social isolation and cognitive decline in the HIV community in all age groups that is concerning. Many more mental health services are needed, as well as education and programming to help support brain health.

Funded through the Patient Centered Outcomes Research Institute (PCORI), SHARE meets quarterly over Zoom. Members participate in research training that includes learning about research methods and ethics, and how to access and read research articles; they also practice research techniques such as interviewing and survey development.

To learn more about SHARE, contact project lead Margaret Danilovich,