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Delaware residents living with a potentially deadly virus —
HIV — talked to researchers with UD's
Disaster Research Center about their experiences during the COVID
The impact of the coronavirus (COVID-19) pandemic has been profound for Delawareans living with HIV, according to a new report from the University of Delaware-based Disaster Research Center.
Researchers interviewed 55 Delawareans living with Human
Immunodeficiency Virus (HIV) in January and February, focusing on those
in greatest need of economic and health-care assistance. The goal was to
gather accounts of their experiences, what they observed, needed, lost,
wished had been different and found most helpful.
Many responses were similar to those of a general-population study DRC did last summer, said Tricia Wachtendorf,
director of the center, with many reporting a deep sense of isolation,
declines in physical or mental health, increasing economic hardship and
uneven access to health care.
"Many of the issues we heard would be familiar to all of us,”
Wachtendorf said. “Layoffs, isolation, helping children or grandchildren
with remote learning. They put off going to the dentist and even having
surgery. But 13% had missed medication and 20% missed or delayed
routine HIV lab tests."
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Tricia Wachtendorf is director of the Disaster Research Center at UD.
Those disconnects are important for anyone concerned about improving care and developing plans for future crises.
Many living with HIV are ahead of
the curve when it comes to coping with a potentially deadly virus. They
already know the importance of trusted sources, accurate information,
reliable testing and consistent medical care. Many also know — all too
well — the heart-rending effects of distance and disconnection.
"One thing that really struck us, compared to interviews we did last
summer, was that many participants in the HIV study were much more
likely to use words like 'fear' or 'scared' when describing COVID-19, as
opposed to 'anxious' or 'concerned,' " Wachtendorf said. “They realized
the potential for this to be life threatening."
For that reason, most said they took public health guidelines seriously.
"The fear they talked about didn't result in a sense of
helplessness,” Wachtendorf said. “Instead — to the extent possible by
finances and living arrangements — the participants described taking a
lot of actions to protect themselves against the virus. It wasn't an
This kind of information adds essential context to the data Delaware
already has on its residents living with HIV, said Jordan Hines, manager
of community planning for the Delaware HIV Consortium.
Numbers and data are important, of course, and a comprehensive collection of data is included in Delaware’s 2020 HIV Surveillance Report.
More than 3,400 Delaware residents were living with HIV at the end of
2019, according to the state’s report. Wilmington had the greatest
number of cases and Black men accounted for more than half of all
Delaware cases, but the virus resides in all ZIP codes, among all races,
ethnicities and across all demographics. Suppression efforts have
slowed the spread of the virus, but more than 2,000 people have
progressed to the disease known as Acquired Immune Deficiency Syndrome
Jordan Hines is manager of community planning for the Delaware HIV Consortium.
The DRC study, done at the request of the consortium, adds
qualitative insight to those numbers, giving voice to the backstories
and nuanced contexts represented.
“Delaware is so small, we can always work on the quality of our
data,” said Tyler Berl, executive director of the consortium, who earned
his bachelor’s and master’s degrees at UD. “Qualitative studies improve
our findings here. And having a research institution like DRC involved
The study required extended conversations, some lasting more than two
hours. The consortium, which has more than 400 members, helped DRC
researchers connect with willing participants.
Connection was a frequent theme of these conversations.
“Connection — whether virtual or the lack of connection one-on-one —
is what stuck out to me,” Hines said. “This pandemic was new to
everyone, not just the demographic we serve. It was new across the
board. Everyone struggles trying to move into a virtual world — whether
that is meeting with doctors, having an assessment, feeling like you’re
not really getting served.
“Some shared that they had mixed feelings meeting with a doctor
virtually. Or that they couldn’t meet virtually and they were not
comfortable going to the hospital or going to a doctor’s appointment.”
That may point to a need to invest more in telehealth, Hines said.
“This can help us — as a society and especially our demographic —
recognize what the needs are should this come up in the future,” Hines
Financial insecurity was another frequent theme. Some lost part or
all of their income and had insufficient savings to tide them over.
“When there is a shock to the system, there are a lot who are already
near the cliff financially,” Berl said. “They can easily fall off that
cliff at a time like this.”
COVID-19 testing events, such as this drive-through event in
Seaford, Delaware, last May, have been used to help stop the spread of the virus. Advocates
for those who live with HIV think such events could be helpful as
one-stop testing sites for multiple conditions in the future.
Every person’s situation is different, and the pandemic demonstrated
again that even shared experiences have significantly different impacts
"We should never think about a community of people as entirely
vulnerable,” Wachtendorf said. “Although they contend with a lot of
vulnerability, there are many ways this community has shown strength to
overcome very difficult circumstances throughout 2020.”
As many COVID patients learned, stigma can be visited on anyone who
contracts a communicable disease. That sense of stigma is not new to
those living with HIV.
“We’ve always dealt with a lot of stigma,” Berl said. “And testing
has always been stigmatized. This is another virus that has stigmatized
other populations, including the Asian population. Hopefully,
normalizing testing will bring down some of these stigmas. Anything we
can do to break the stigma of HIV is important to us and to our
With COVID-19 spreading quickly, many stopped going to
community-based testing sites that offered HIV testing. Testing was down
by more than 50%, Berl said.
But now that the need for COVID-19 testing is recognized as critical
for public health, why not have one-stop testing sites that cover
“We hope to see COVID testing sites evolve to where they test for
more than COVID,” Hines said. “We’re slowly getting to some kind of
normalcy, but we should take advantage of all of that testing and test
for opioids, hepatitis C, HIV. This study highlights the need to get
tested across the board for any and everything, not just for this
Two doctoral students — Christopher Tharp and Nancy Rios-Contreras —
who conducted interviews for DRC said the experience was important for
"During the interviews, I heard— and in many ways connected with—
feelings of deep isolation in the experiences recounted by the people
we spoke with,” Tharp said. “The isolation was often expressed through
stories of powerful, self-reliant resolve; but it was also often
expressed in stories of grief and even, sometimes, loneliness."
All of that helps to bring a global disaster into personal focus.
“The collaboration between the Delaware HIV Consortium and the
Disaster Research Center allowed me to explore how a global pandemic
connects to the local community experience,” Rios-Contreras said.
Direct quotations from some participants are sprinkled through the report.
One expressed the hope that has made the long struggle against COVID worthwhile.
“It’s a sacrifice worth taking [protective measures and isolating]
because I’m looking at the light at the end of the tunnel. I’m looking
at the end of the road. And I would rather be here and healthy, than
Wachtendorf found those words impressive.
“We’ve seen so many other people out in the community not taking
protective guidance seriously, not appreciating that their actions do
impact others,” she said. “The Delawareans living with HIV with whom we
spoke took COVID-19, as well as the responsibility to protect themselves
and others, very seriously."
Funding for the study was provided by the Delaware HIV Consortium and the Disaster Research Center.
Tricia Wachtendorf is director of the Disaster Research Center and
professor of sociology and criminal justice with a joint appointment in
the Joseph R. Biden, Jr. School of Public Policy and Administration.
Nancy Rios-Contreras is a DRC-affiliated student and a doctoral
student in the Department of Sociology and Criminal Justice and,
starting this fall, an assistant professor at Chapman University. Her
dissertation focuses on human migration, social vulnerability, and
Christopher Tharp is a DRC-affiliated student and a doctoral student
in the Department of Political Science and International Relations. His
dissertation explores the macroeconomic perspective of disaster —
specifically the financial debt crisis in the 21st century, Hurricane
Maria and coronavirus in Puerto Rico.
Article by Beth Miller
Photos courtesy of Army National Guard Capt. Brendan Mackie, Tricia Wachtendorf and Jordan Hines
Published May 10, 2021