A global village ‘in our backyard’
Studying healthcare disparities for immigrants & refugees
Irene Sia, M.D. (INFD ’99), can relate to the immigrant experience. One of eight children in her family and the only one to pursue healthcare, she completed medical school and residency in the Philippines. To become licensed in the U.S., she had to repeat residency. She then completed a fellowship in infectious diseases at Mayo Clinic in Rochester. Dr. Sia says she encountered cultural differences between the two countries.
“Racial discrimination influences how I look at things and helps me be empathetic to the experiences of other immigrants and refugees,” says Dr. Sia, Division of Public Health, Infectious Diseases and Occupational Medicine at Mayo Clinic in Rochester. “I was inspired to want to help others by observing my mother, who was the person friends called for advice about Chinese medicines. I’ve
long been interested in global health. Sometimes global health means going to other countries. But we have a global village in our backyard in Rochester.”
Five years after completing her fellowship at Mayo Clinic, Dr. Sia learned about tuberculosis-related concerns among students — most of whom are immigrants and refugees — at Hawthorne Adult Education Center in Rochester. Several cases of active TB had been diagnosed, creating an environment of fear and stigma. Hawthorne serves a large foreign-born population and offers programming including learning the English language, getting a General Educational Development (GED) or high school equivalency credential, and starting college. Hawthorne learners represent more than 70 languages. Recent emigration from regions of the world where TB is endemic elevates the risk for reactivation of the disease. Despite the public health system having policies and processes for evaluating and treating TB, Hawthorne learners weren’t getting tested or treated. Attempts at voluntary TB screening had resulted in very low participation rates. Dr. Sia became involved in getting to the bottom of the problem.
“We needed to listen to the affected population and figure out the barriers to testing and treatment,” she says. “We received NIH funding to look into the problem and develop solutions. That meant partnering with the community for the long term. We approached the situation as research partners with the community, not as a service provider. Our goal wasn’t to deliver TB treatment — the public health and healthcare systems do that. Instead, our goal was to determine why the existing system wasn’t working well. To have an effect, you can’t always apply what you think you know to a population that may not relate to it. You have to sit down with community members to learn about their experiences and health priorities.”
NIH funding supported the establishment of the Rochester Healthy Community Partnership. Partners include Mayo Clinic researchers, community organizations, medical centers, public health agencies, schools and universities. The partnership’s primary aim is to improve health through community-based participatory research, education and civic engagement. Community-based participatory research uses collaborative research methods that engage community members, uses local knowledge in understanding health problems and the design of interventions, and equitably involves researchers and community partners in all aspects of research.
“We’ve developed an effective community-based research infrastructure and are experienced in designing and carrying out programs with community partners who help identify health priorities in and solutions for their communities,” says Dr. Sia. “We have a strong track record of engaging research participants from minority populations who remain underrepresented in clinical trials, programs and initiatives aimed at improving health among these populations.”
A 2016 comprehensive evaluation conducted by the University of New Mexico showed that the success of the Rochester Healthy Community Partnership is largely due to continuous and active community leadership and effective leveraging of resources.
Let’s talk about TB
Dr. Sia’s team developed a community-based participatory research approach for the Hawthorne TB situation. Research identified that fear and stigma about TB were barriers to testing, which opened the door to talking with involved parties about those concerns.
The team conducted TB screening opportunities at Hawthorne, each preceded by a brief education session in classrooms, with a video that was developed and tested at Hawthorne by the partnership. Facilitators described testing procedures, answered questions and left sign-up sheets in classrooms. The discussions created an atmosphere of open dialogue about TB. Names from the sign-up sheets were shared with the TB clinic to determine those who were eligible for on-site screening. More than 618 tests were completed between 2009 and 2017, with 121 positive results. Of those, 101 completed evaluation at the TB clinic; none were determined to have active disease. Seventy-two patients started medication for latent infection at no cost to them.
This intervention has been sustained due to the participatory, adaptable framework and ownership by stakeholders.
“We work with immigrant groups in the community to identify priorities or barriers to health and healthcare and, importantly, work together through research on how to improve,” says Dr. Sia. “We created methods to explore this research approach and implement interventions in a participatory manner.”
Stories for change
In another project, Dr. Sia’s team and the Rochester Healthy Community Partnership are exploring whether digital storytelling interventions for chronic diseases such as diabetes could be effective among individuals who don’t speak English as their primary language.
Racial and ethnic minorities in the U.S., including immigrants and refugees, are more likely to have suboptimal diabetes outcomes. According to Dr. Sia, culturally tailored storytelling has been used as an effective intervention method to target health behavior changes. In this community-based participatory research project, the storytelling intervention development was derived through an equitable partnership that empowers communities, promotes understanding of culturally pertinent issues and targets multifaceted health barriers.
The Rochester Healthy Community Partnership surveyed Somali and Latino immigrant and refugee community members who had Type II diabetes to assess diabetes attitudes, knowledge and behaviors; and conducted focus groups to allow community members to share experiences with medication management, glucose self-monitoring, physical activity and nutrition.
Survey participants reported a high burden of disease, negative perceptions of diabetes and multiple barriers to optimal diabetes management. The focus groups revealed that acceptance of a diabetes diagnosis often took several visits to healthcare providers and repeated testing. Participants talked about the pain and anxiety they experienced with glucose testing and injections. In some cases, a self-care activity was considered counter to cultural traditions or norms. Family responsibilities, work and the expense of healthy food also were identified as barriers to self-care.
From the focus groups, team members identified candidates to serve as authentic storytellers. The eight who were selected — four each from the Somali and Latino communities — participated in four and a half days of workshops to create deeply personal, powerful stories about their experiences with diabetes self-management. The narratives included information, communication and persuasion to encourage behavior change — a technique that may be particularly effective in populations with strong oral traditions. Two video packages were created — one in each language and both with English language subtitles. The videos included an introduction, four personal stories and a concluding educational message.
Mark Wieland, M.D. (I ’08, CMR ’09), chair, Division of Community Internal Medicine, Geriatrics, and Palliative Care at Mayo Clinic in Rochester and Dr. Sia’s academic partner, says this work was the first to describe participatory development of a culturally and linguistically appropriate digital storytelling intervention to improve Type II diabetes management among immigrants and refugees.
Ninety-six percent of participants in the storytelling intervention reported increased confidence about managing their diabetes, and 92% reported that the video motivated them to change a specific behavior in their self-management. Participants also showed improvement in glycemic control post-intervention. Drs. Sia and Wieland recently completed an NIH-funded randomized clinical trial of the storytelling intervention with 455 participants. Results of that study showed improvements in diabetes control.
“The groups who participated in this research came from different continents with different linguistic and cultural experiences, but their knowledge about and attitudes, perceptions and behaviors related to diabetes were very similar,” says Dr. Sia. “Many participants share a common lived experience of low socioeconomic position, immigration and limited English proficiency. The systemic barriers they face are probably more significant than the cultural barriers to healthy behaviors. It’s important that we keep this in mind when we develop interventions to improve health.”
‘A gift’
Partnership has included myriad other research projects, including obesity prevention and cancer screening, over two decades of teamwork.
“My expertise isn’t in physical activity, nutrition and diabetes but, rather, is in engaging with communities. We work with community partners and build relationships and trust with them,” says Dr. Sia. “Our aim is that our research studies will inform policies and practices to sustain change in public health. We’re celebrating 20 years of these efforts in the community — 20 years of developing trust.
“I may be more empathetic to things the immigrants and refugees I work with have experienced although my experience doesn’t compare to theirs. I think I have greater perspective because I wasn’t born and raised in the United States. Immigrants and refugees have a lot to contribute to our country. I consider the opportunity to work with them to be a gift.”
This article was taken from the Public Health issue of our Alumni Magazine. Read the magazine in full here.