Research Designed Through the Eyes of Youth
There's power in giving youth the means to document what they see as the barriers to their community's health. This project from Charlotte, N.C. shows us how this innovative research design can be a step to addressing local disparities.
Last year, we at the Robert Wood Johnson Foundation asked our community a bold question: What was considered the most influential research around identifying and eliminating disparities? In our first-ever Culture of Health reader poll, a winning research paper emerged in Por Nuestros Ojos: Understanding Social Determinants of Health through the Eyes of Youth, published in the Summer 2014 edition of Progress in Community Health Partnerships. The research project equipped young people in Charlotte, N. C., with cameras to identify and document environmental factors that impact health in their Latino immigrant community. What really makes this paper resonate for us—and, it seems, for many of you—is that it provides a clear example of how community-based participatory research (CBPR) is an important approach to understanding the multiple factors underlying health disparities.
We wanted to learn more about this interesting example of participatory research and how the Por Nuestros Ojos project is helping advance health equity in Charlotte. Recently, our blog team had a conversation with three of the study’s authors to find out how employing a participatory research model can help enormously in understanding and eliminating disparities in marginalized communities. Below is an interview with Johanna (Claire) Schuch, research assistant and doctoral candidate at the University of North Carolina at Charlotte (UNCC); Brisa Urquieta de Hernandez, project manager at the Carolinas HealthCare System and doctoral student at UNCC; and Heather Smith PhD, professor, also at UNCC.
In the Por Nuestros Ojos research project, young people used cameras to visually document factors influencing their neighborhood’s health—including poor housing conditions, pollution, dangerous pedestrian crossings, and gang activity.
Here are just a few of the photos from this project, with images and captions courtesy of the youth participants in the MAPPR Photovoice Project.
Tell us about Charlotte and the background of MAPPR.
The Mecklenburg Area Partnership for Primary care Research (MAPPR) is a practice-based research network founded and directed by Michael Dulin, a physician and past RWJF Physician Scholar who came to Carolinas HealthCare System in 2006. Dr. Dulin was surprised to see that there were almost no Latino patients coming to one of the health system’s primary care safety net clinics, even though it was located in an area with high number of Latino residents and Charlotte had experienced a 1,000 percent increase in Latinos over the past 20 years. Dr. Dulin reached out to the Latin American Coalition, a community advocacy group, and found out that the group didn’t even know the clinic existed. Language, culture and being uninsured prevented many of Charlotte’s newest residents from accessing primary care, leading to health disparities. Since then, MAPPR has been conducting research on ways to improve access to healthcare for underserved populations in Charlotte and Mecklenburg County and to identify and address social determinants of health.
How did you identify neighborhoods with the greatest health disparities?
We used census and other quantitative databases to map out where areas with the most needs were located. Since our network includes a large health care system we also had the opportunity to evaluate health data at a neighborhood level. Additionally, we put together a community advisory board that met with providers and key stakeholders to raise their awareness about particular community needs. Once we developed a mapping model that identified neighborhoods with the largest Latino immigrant population and greatest health disparities, we conducted interviews with community focus groups to drill down further and gain insight into specific concerns of this population.
One of the most intriguing aspects of this paper is that student researchers were integral to the project. What did these college and high school students bring to the table?
When we were learning about the Photovoice technique we thought it would be a great idea to involve college students and high school youth in our research. One of our MAPPR network members was teaching an undergraduate neighborhood planning class at UNCC and thought this would be a good opportunity for her students to have a hands-on experience. The youth group [United 4 The Dream] members were already very involved in the community and brought a really unique perspective to the project. Most of them have immigrant parents but were raised in U.S. so they understand both cultures. They were very open and honest throughout the project, and didn’t tell us only what we wanted to hear. The students already had a social justice perspective; we just provided them with the opportunity to look at disparities from a health point of view.
How did the student researchers choose what to take pictures of?
Before the students went out with their cameras we talked about what they see as a healthy community and how physical features of the built environment can impact health and our lives. We talked a bit about being cautious of taking pictures of people, especially without their consent. I think we underestimate what people already know about health and the environment and that you don’t necessarily need to be an academic to understand the connection. In fact, sometimes the connections are not what researchers think. For example, we looked at a community playground as a positive feature, yet the students who live in the neighborhood showed it in a less positive light by taking pictures of a homeless man drinking there and graffiti on the playground equipment. The track would be a great place to run, but someone was raped there and local residents are scared to take advantage of it. You wouldn’t know any of that if you didn’t have these students to provide context of their lived experience in the neighborhood.
Your research was chosen as the most influential research of 2014 that highlights the identification and elimination of disparities in health care. How do you think it achieved those goals?
A: First of all, one of main strengths is that we have such an interdisciplinary team. In addition to the academic and clinical side we have voices from the community because, at the end of day, if you’re not involving the people you are targeting how do you know you’ve got it right? The ability to use photos and narratives to show how community features impact health was important; you just can’t get that through text and quantitative information. That ties into a more comprehensive view of health; how does the environment you live in affect your health? Yes, it’s about your personal and physical characteristics but also the environment you live in. Crime, language and cultural barriers, transportation issues and lack of insurance, all affect your health and well-being. The Photovoice project gave us a better understanding of this community, and for Carolinas HealthCare System, we are better able to engage residents in coming up with effective ways to eliminate disparities.
The student research teams provided photo evidence of unsafe street crossings, dilapidated housing, water and air pollution and evidence of criminal activity. Have any of these problems been addressed?
After collecting this photo information we held presentations at neighborhood forums that included community members and stakeholders. The community decided to hold a series of wellness fairs where residents could have their blood pressure and glucose levels checked and talk to providers about their health and available services. Social service providers were also present at these fairs to address non-medical issues that impact wellness on a broader level. For example, housing code enforcers were present, offering guidance to residents on how to report their landlord for not fixing a roof or leaky plumbing. Representatives from the city’s public transit system came with maps to help residents plan how they can get to free or low-cost clinics or access social services. Our research findings didn’t lead to specific changes being made to the built environment, but community members learned how to access help and are becoming more empowered to overcome barriers to a better health.
Your paper also notes several positive factors contributing to community health, including Women, Infant and Children Offices, a grocery store, a new fire station and schools. Why is it important to include these positive factors in an evaluation of the social determinants of health?
We can’t work with a community and just have it all be negative. You’re already dealing with a community that’s under stress; pointing out only the negative will add to that stress. You want to make sure that residents are aware of the positive aspects of their community and their potential. If there is a park or playground in the neighborhood maybe it should be salvaged and be available for families and kids to use. We have to recognize that people bring strengths to their community as do local businesses, they may just be undiscovered. When we conduct our focus groups and neighborhood forums we always want to end on a positive note.
What comes next for MAPPR?
One of our immediate next steps is to analyze data from interventions like the wellness fairs and community forums that took place after the Photovoice project. We are also interested in engaging local youth and families in another project that looks at the impact of social determinants of health and the built environment on obesity. In addition, we plan to look at the mental health and well-being in the Latino immigrant community as this has been something that has been coming up as an issue for a long time. Lastly, Claire was inspired by this Photovoice project to continue participatory research with Latino immigrant youth for her dissertation.
On Thursday, March 19, RWJF staff hosted a workshop at TED2015 in Vancouver, asking participants to share their ideas for overcoming the inequities that stand in the way of building a Culture of Health. It was truly "truth or dare" time. They weren't shy about it; in fact, they were overflowing with creative—and in some cases, challenging—ideas. Find out what they had to offer, and check out five stories by some remarkable young filmmakers.