Youth movements for social justice are growing across the U.S. and worldwide, tackling important issues from climate change, to racial justice, to education access and gun control. In the realm of health care, youth participation can lead to greater patient understanding, engagement in services and enhanced trust in services. It can also promote patient and community empowerment.
Recognizing the benefits of youth engagement and leadership, a novel study by researchers from Boston University Schools of Medicine and Social Work, presents the perspectives and experiences of youth on the issue of individual and community health during the COVID-19 pandemic.
“Our research describes the work of Youth Advisory Board members, supported by a team of adults to uplift the experiences of youth of color who have been historically marginalized by the healthcare system,” explains senior author Katherine Gergen Barnett, MD, clinical associate professor of family medicine.
The researchers used Photovoice, an established methodology that incorporates the use of cameras to capture images that are later reviewed and reflected upon. In this case the goal was to explore youths of color individual and community perceptions of health during the COVID-19 pandemic.
The youth researchers were asked to take a series of photos over three weeks focused on what health or healthiness meant to them and their community. They then selected five photos and shared them with the group. Questions were asked to encourage deeper reflection on how social, cultural and contextual factors impact how youth of color conceptualize what health means to them.
The youth researchers then were asked to share their reactions to seeing the photos as a group, including what they found interesting and what stood out to them. Photos were captioned and five photos that reflected the larger story were selected. Using thematic analysis, the youth researchers then brainstormed themes from the individual photos and across the photos, considering how the photos connected with the research question. Through in-depth discussion and drawing from the identified themes, youth researchers reached consensus on the larger narrative represented in the photos.
The youth researchers identified four themes related to individual and community health through the digital images and discussions, including: 1) Taking health into our own hands; 2) Toxic productivity culture; 3) High cost of personal health resources; and 4) Inequitable health policies and services.
According to the researchers, these themes are a powerful demonstration of both the inequitable impact of COVID-19 on communities of color as well as the historic medical mistrust (of government, policy makers, and health care) in communities of color. “Our findings show the need to change this narrative of distrust,” said Gergen Barnett who also is Vice Chair of Primary Care Innovation and Transformation at Boston Medical Center.
“First, we want to create a tangible change in the structure of health resources in Boston’s communities of color. Secondly, we hope that the impact of our research demonstrates the resilience of communities of color during the quarantine period of the COVID-19 pandemic,” said youth researcher and co-author Osasenaga Idahor.
The researchers believe this study shows the importance of creating spaces to elevate the voices and leadership of youth of color in health care decision making. “Community engagement is critical to developing and implementing relevant and racially responsive health care practices,” added corresponding author Astraea Augsberger, PhD, assistant professor at BU School of Social Work.
These findings appear online in the Journal of Community Psychology.