As the pandemic grinds on, there’s still so much we fear and don’t know about the coronavirus. Information, when it becomes available, isn’t always complete and rarely satisfies our desire to understand. When the news media announced vaccines were on the way last fall, that need for knowledge only grew — with apprehension for some, intense desperation for others. A whirlwind of information and misinformation — circulated by sources ranging from the Centers for Disease Control and Prevention to strangers on social media — has bred confusion during an unprecedented time.
“The whole situation has been heavily politicized because [of] the pandemic unfolding in the middle of [an] extremely polarizing and controversial election time,” says Dominique Brossard, an expert in risk communication and professor and chair of the University of Wisconsin–Madison Department of Life Sciences Communication in the College of Agricultural and Life Sciences. At times, former President Donald Trump’s pandemic response team and federal, state and community health officials offered inconsistent and sometimes conflicting messages. “At the end of the day, when you want to have good public health communication, what you want to have is consistent, trustworthy and credible information that comes from all sources,” Brossard says. In the United States, Brossard notes, trust in local public health officials has generally been strong during the pandemic and remains so.
But what has also become clear as local officials work to educate and vaccinate nearly 550,000 Dane County residents is that disparities and distrust among some groups existed long before the coronavirus. Different populations, including the Hmong, Black, Latinx, Southeast Asian and Indigenous communities, have divergent needs, as do aging adults and people experiencing homelessness.
What’s crucial is “making sure everyone has access to the vaccine, no matter their insurance or immigration status, language skills, housing situation or transportation availability,” says Lourdes Shanjani, bilingual health education coordinator for Public Health Madison and Dane County. PHMDC refers uninsured people to sign up for free inoculations at the Alliant Energy Center, or PHMDC will match people with a vaccinator in Dane County.
Equity — marked by culturally relevant, community-specific resources — is the ideal, but is it being achieved locally as government entities, health care organizations and other human services groups race to roll out the vaccine? There is no roadmap for a year-long crisis like this. Questions from community members are a constant. Information is flowing in from multiple sources. While some are concerned with how to get a vaccine, others are worried it’s not safe. And with every passing minute, America’s COVID-19 death toll climbs.
The Information Station
Public Health Madison & Dane County has become the primary local source for pandemic and vaccine information for much of the public. As the emergency response has continued to evolve for more than a year, PHMDC has had to adapt to an environment where information changes at a rapid pace.
“We might get guidance from the state and need to get something out within an hour,” says Christy Vogt, a PHMDC health education coordinator. Communicators synthesize sometimes complex health information from higher levels of government, like the Wisconsin Department of Health Services, and distribute it in an easily digestible format to the public. Pre-pandemic, the communications team would create a fact sheet with health recommendations, for instance, and then pilot it with members of the intended audience. With that feedback, they’d make adjustments before releasing it to the public. “That process is just not super realistic at this point,” Vogt says.
A PHMDC news conference held in those early, hectic days of the pandemic was a harbinger of things to come, she recalls. “We announced a phone line people could call with questions, and I remember standing at my desk and hearing the phone start ringing while the news conference was still happening,” Vogt says.
In 2019, PHMDC received 103 media inquiries. “We’ve had that many in one month,” Vogt says of the number of post-pandemic inquiries. “I think we’re over 1,000 so far.”
The PHMDC communications team — which increased its staff in 2020 by hiring Lourdes and pulling others from elsewhere in the agency — integrates input from its community liaisons, who prioritize keeping Dane County residents updated with what can be lifesaving information that’s tailored to different populations’ cultural context and concerns.
Complexities Within the Hmong Community
Several local organizations, including The Hmong Institute, have relied on PHMDC to deliver the most important up-to-date information to pass on to their community members. Many of Dane County’s Hmong residents had already weathered a tough 2020 by the time talk of COVID-19 vaccines began late in the year. First, anti-Asian discrimination was exacerbated by elected officials who blamed the pandemic on China, mockingly calling it the “kung flu.” At the same time, the federal government was in talks with Laos to deport some Hmong people in the United States, creating unease in the community.
Pandemic conditions have also triggered old fears of persecution and starvation among some local elders in Madison’s Hmong community. Hmong political refugees who fled Laos in 1975 following the Vietnam War were among those organized and trained by the CIA to fight against communist forces for 15 years. Threatened with genocide for working with the enemy, they escaped, but not before nearly a quarter of Hmong males died. Those who made it to Ban Vinai refugee camp in Thailand lived for years in crowded conditions with a scarce food supply and no running water. Many of the fortunate were resettled in the United States and France.
During the pandemic, the socially active community’s typically large gatherings — like weddings, which can draw as many as 700 people, and Hmong New Year — were canceled. They were isolated initially, with sparse pandemic-related information available in their language. Peng Her, CEO of The Hmong Institute in Madison, established a statewide hotline for Hmong and other Southeast Asian community members, including Tibetans, Burmese and Nepalese. Now bilingual and bicultural hotline staff offer up-to-date and accurate information sourced from PHMDC.
More recently, the thought of getting the coronavirus vaccine has triggered renewed fears among some Hmong elders, many of whom have PTSD from war and refugee experiences. The safety of the expedited vaccine and the process of obtaining it are top of mind for many in the community. “They would rather not get the vaccine shot because of the fear of catching COVID-19 at the hospital,” Her says.
Other elders, satisfied with information on the vaccine’s efficacy, still need help registering online to get it. The process can be confusing for anyone, as area health care centers have various ways to register, including online or by phone.
“Oftentimes, communities of color are the ones being left out. Someone who has access to the computer and uses English [and] has access to MyChart [is okay], [but] someone else, like someone in the Hmong community, would not and they would take longer to get vaccinated,” Her says.
Historical Context Matters
Local health systems — which are contacting patients about vaccine availability and signup options — are an important conduit for getting information to patients and broader communities, especially those with doubts about the vaccine.
“When we talk about the level of distrust around the vaccine, we have to validate people’s experiences as to why that is. We can’t just blow over it and say, ‘Get over it, it’s no big deal.’ Because historical context also matters,” says Corinda Rainey-Moore, community engagement manager at UnityPoint Health – Meriter. “Our goal is to help people make informed decisions about what is best for them and their families.”
In January and early February, Rainey-Moore began meeting regularly with a group of representatives from PHMDC, as well as other Madison health care facilities — UW Health, Group Health Cooperative, SSM Health St. Mary’s Hospital–Madison and Access Community Health Centers — to strategize communication and outreach. Together, they’re promoting equitable vaccine access. At the same time, they’re reaching out to Madison leaders and organizations that support Black, Latinx, Southeast Asian and Indigenous communities.
“We know there’s a lot of unreliable information out there, but we want to make sure that we’re giving folks the most updated and factual information. That comes in many different forms,” Rainey-Moore says. “For some people, it could be hearing it from trusted individuals; for others, it could be giving them materials from trusted sources or resources that they can read and make those decisions themselves.”
Rainey-Moore co-organized a two-hour vaccine panel discussion and Q&A session in early January 2021. The widely attended event was streamed online from the sanctuary at Mt. Zion Baptist Church, a historically Black congregation with deep roots in Madison. Black people are 6.4% of the state’s population, but they account for 7.3% of COVID-19 deaths, according to February data from the Wisconsin Department of Health Services.
“This vaccine and the availability of it is probably the most important public health conversation of our lifetimes, so it’s critical for us in our communities of color to really have knowledge and understand everything about it,” said Shiva Bidar-Sielaff, vice president and chief diversity officer at UW Health, at the beginning of the panel discussion.
Mt. Zion Baptist Church Pastor Dr. Marcus Allen hosted the panel of racially diverse experts, all masked and seated in chairs at a proper physical distance. Its members included Dr. Sheryl Henderson, a UW–Madison associate professor and career virus and vaccine researcher, and PHMDC’s Shanjani. UW Pediatrics Department researcher and educator Dr. Jasmine Zapata and Krisna Wells, UnityPoint Health – Meriter nurse manager of the intermediate care unit, joined online.
Panelists began by sharing their vaccine stories: their initial concerns, reasons for getting the vaccine and personal experiences with the process. Then, for more than an hour, the experts addressed community questions.
Near the end of the broadcast, Allen asked panelists to speak about the infamous Tuskegee experiments. The notorious program, officially named the “Tuskegee Study of Untreated Syphilis in the Negro Male,” began in 1932 in Tuskegee, Alabama, and was supported by the U.S. Public Health Service. Over four decades, 400 to 600 Black men, mostly sharecroppers with no access to doctors, were promised free medical care and treatment for a condition that at the time was chalked up to “bad blood.” When penicillin became available in the 1940s, the researchers withheld it from syphilitic men and demanded local doctors do the same. Many men died of the sexually transmitted bacterial infection, which also spread to women and children in the community. The study ended in 1972 after a whistleblower reported the unethical experiments. Fallout from the study prompted the development of ethical principles and laws regarding human research studies.
“This is the distrust that’s in the African American community,” Allen said. He referenced findings that Black Americans are systemically undertreated for pain relative to white Americans. Research shows the discrimination is based on antiquated and false beliefs about biological differences between white and Black people. He also mentioned Henrietta Lacks, a Black woman whose biopsy tissues were taken for research without her consent in 1951. The cells, modified at Johns Hopkins Hospital to allow them to regenerate indefinitely, have been used in medical research ever since. “That’s why I wanted to have this panel, to see people of color, professionals in this field, to let us know it’s safe to take the vaccine.”
Most panelists encouraged viewers to get vaccinated as soon as they are able. Damond W. Boatwright, regional president of operations and chair of the hospital board at SSM Health Wisconsin, emphasized the growing number of people of color working in public health. “We can be a testimonial that we want to turn the page,” Boatwright said, “so that, again, this is more inclusive and more equitably done for all of our brothers and sisters in the community today.”
First in Line
Adults 65 and older have been the first broad demographic with access to the vaccine.
“Throughout this pandemic, seniors have been hardest hit. Whether they are living in the community or in a long-term care facility, they have been the most vulnerable population,” says Sridevi Mohan, an epidemiologist currently serving as a PHMDC liaison to the aging and long-term care population. Locally, seniors have expressed vaccine hesitancy and distrust in “Big Pharma,” Mohan says.
Elders may also have the most barriers to the vaccine. Some don’t have the basic facts, or the skills or internet access to obtain them. Others may be more tech savvy and can register themselves for vaccination, but transportation, disability, location, language and experience with the health care system also affect their access. Initially, PHMDC offered an online form for uninsured elders who want to register for the vaccine.
“We soon found out that not all seniors and not everybody has a smartphone to download some of the survey information, and they might not even be utilizing email,” Mohan says. “So then we figured out that we need a number for them to call in to get the appointment.” The online form still exists and fliers with vaccine and hotline information were distributed as well.
PHMDC works with a strong collective of local groups to engage with seniors about the vaccine. Members include Area Agency on Aging of Dane County, the Aging and Disability Resource Center of Dane County, Dane County Adult Protective Services, caregivers at the local Veterans Affairs office, a county dementia crisis prevention specialist, the Alzheimer’s & Dementia Alliance of Wisconsin and the Developmental Disabilities Coalition of Dane County Inc. Mohan is one of about a dozen PHMDC community liaisons, each responsible for working with specific sectors of Madison. As vaccines have become available, the liaisons have pivoted to disseminating vaccination information through regular interactions with local groups who provide support and care for at-risk populations. As a result, PHMDC has created a valuable feedback loop informed by questions and concerns unique to different populations — one that bolsters public health literacy with the latest COVID-19 facts.
Mohan and other vaccine and communications team members routinely provide updates to local groups on vaccine accessibility. Mohan sits in on calls with the county’s senior centers. The organizations spread the word about vaccine availability and safety to their clients, volunteers and board members. They, in turn, inform Mohan of concerns and questions they encounter in their work with seniors. She acts as a point person to adjust outreach in tune with community needs.
“It’s not like one-way communication, like me providing information out to partners,” says Mohan. “We also use these partnerships to discuss various approaches for our seniors and find out ways to mitigate so that when vaccines are available, we can get shots in the arms for anybody who is eligible.”
Helping the Homeless Population
The scores of people living in Madison’s shelter system and those gathered in encampments across the city who are experiencing homelessness are another at-risk population in Dane County. Doubts about the vaccine are common in this group, says Kim Neuschel, PHMDC liaison for housing and homeless services for the COVID-19 response.
“We know that many homeless individuals feel an understandable distrust of government and health systems after centuries of racist and oppressive practices and policies that have caused real harm,” Neuschel says. “They have some very valid concerns and vaccine hesitancy based on our history. So taking the time and answering their questions is more than important — it is critical.”
Neuschel has heard from some in this population who don’t believe COVID-19 exists. Another common fear is that the vaccine is being tested on them because they’re seen as disposable. Like other liaisons, she acts as a conduit for information to and from PHMDC. Questions and concerns from homeless services and community members can be adapted into talking points for staff and used to create outreach materials like posters and postcards for shelters and encampments. The goal is to get solid information to trusted homeless services workers so they can share it with the people they’re serving.
“If that person can relate to your lived experience, if they themselves are homeless or have experienced homelessness, then you’re even further along in actually being heard and trusted with the information that you’re offering,” Neuschel says.
Early on, PHMDC worked with partners to set up pandemic safety measures in the network of local shelters and in the emergency shelter system. In those operated by the city and by partners like Sankofa Educational Leadership United, Just Dane and the YWCA Madison, a mandatory mask policy has been in place since March 2020, which was months ahead of the state’s mandate. The virus has been kept largely at bay with the help of physical distancing, a shift in shelter structure and locations, mandatory symptom and temperature checks, contact tracing and regular testing. The first case of COVID-19 in a shelter wasn’t detected until fall. Homeless residents who test positive are cared for in the county’s medical respite shelter.
During the pandemic, the shelter system expanded to include stays at vacant hotels for families and homeless individuals who are 65 and older or high-risk due to pre-existing conditions. By late February 2021, shelters were serving nearly 800 households, according to data from the Homeless Services Consortium of Dane County. These households are made up mostly of single adults, though some include children.
“We’re not trying to coerce people into being vaccinated. We’re trying to support people in making the decision that is right for them and that is in support of the broader community’s health,” Neuschel says. “We’ll see how successful we are once we’re actually able to get the vaccine out into the [shelters].”
PHMDC’s Vogt says the key to effective communication has been collaborating with established community leaders to dispel myths about the vaccine, collect communities’ questions and concerns and to disseminate concise vaccination information in easy-to-understand formats.
For Rainey-Moore, it was this type of community conversation that partly helped her make the decision to get vaccinated. Initially, Rainey-Moore says she was on the fence about it, even though her husband insisted.
“It wasn’t really until we did the panel with Mt. Zion and listening to the experts who I trusted on the panel talk about their decisions and why [they chose vaccination],” Rainey-Moore says. She was impressed that they answered every question and admitted when they didn’t have an answer.
Losses in her family during the pandemic influenced Rainey-Moore’s decision as well. During a year spent isolating and avoiding loved ones for fear of spreading the virus, both her stepfather and father-in-law died.
“What COVID-19 taught me is that we don’t ever know how much time folks have on this earth. So I made the decision to get [the vaccine] for my family so that I can also visit them without being concerned about passing on stuff to them,” says Rainey-Moore, whose personal story connects with her commitment to her own community outreach tactics.
Local health systems are sharing their messaging and materials with each other, along with updates on the community organizations they’ve contacted or plan to contact to streamline outreach.
“It’s a collaborative effort, and it takes full commitment and intentionality to do this work,” Rainey-Moore says. “Our goal is not to force people to get the vaccine; it is not to sway people one way or the other. It’s typically just to provide them with accurate information to make that informed decision themselves.”
Liaisons emphasize that groups learn better through interactions tailored to their culture and concerns. Shanjani, who works with the Latinx community in Dane County, says some undocumented Latinx are hesitant to be vaccinated because of a fear of deportation. Others are uncertain how to access the vaccine without insurance. Latinx in Wisconsin, at 7.1% of the population, account for 11.2% of all COVID-19 cases, according to data released in February by the Wisconsin Department of Health Services.
“When working with this group, it’s important to have a humble approach, practice active listening and engage in authentic relationship-building,” Shanjani says. “People in the Latinx community appreciate establishing connections at a personal level. That helps with building trust.”
Holly Marley-Henschen is a Madison-based journalist and communications consultant. Madison Magazine editor Andrea Behling contributed to this article.
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