Hi everyone!
My name is Suzanne, and I am working towards my PhD in public health at Johns Hopkins Bloomberg School of Public Health. My dissertation research focuses on the health-related quality of life among adolescents and young adults living with chronic hepatitis B in the U.S. In short, I am interested in understanding what life is like for young people living with this lifelong condition.
Health-related quality of life is defined as the perception of one’s physical, social, and psychological functioning in relation to one’s condition. It is shaped by personal experiences with one’s health, illness, and potential treatment, as well as changes in health over time (or anticipated changes). As we know, there is currently no cure for hepatitis B, and this diagnosis carries risks of serious liver problems in one’s lifetime if it is not managed well. Younger age groups with this condition typically learn about management early on, which often includes regular visits with a healthcare provider, blood tests, and scans (e.g., ultrasounds). For this group, all of this is happening at the same time that they are seeking more independence from family and caregivers, figuring out who they are, and balancing other social priorities. But we don’t hear enough from adolescents and young adults to understand their experiences and perspectives on living with chronic hepatitis B. That is where my research comes in!
I am doing in-depth interviews with adolescents and young adults living with chronic hepatitis B to understand their lived experiences, including how they make decisions about their health, moving from pediatric to adult care settings, and how they talk with others about their condition. I am also working with some of them to create short films that tell their stories. These films help them reflect on their journey living with chronic hepatitis B. Together, this approach is designed to be really participatory, encouraging the sharing of personal narratives, empowering participants to take ownership of their experiences, and providing others, such as health providers, parents, and researchers, with a deeper understanding of what it’s like to live with chronic hepatitis B.
The goal of this work is to make sure their voices are centered in the conversations surrounding their health and well-being and to help others better support them. This is an ongoing study and I am excited to share what we learn with this community and others who support individuals living with hepatitis B.