Empowering Youth to Navigate sickle Cell Disease: The Work of Marquette‘s IMPACT Lab
Marquette University’s IMPACT Lab is dedicated to improving the lives of individuals affected by sickle cell disease, with a particular focus on empowering young peopel to proactively manage thier health. The lab’s work extends beyond traditional research, encompassing education, resource development, and direct engagement with those living with the condition. This commitment stems from a desire to give young individuals agency over their lives, even while facing the challenges of a chronic illness.
A key component of this approach is fostering self-advocacy. Dr.Lee Za Ong, an IMPACT Lab researcher and associate professor in the School of dentistry, emphasizes the importance of equipping young people with the skills to navigate healthcare effectively. “They need to learn from a young age how to advocate for themselves,” she explains. ”One of the things we can teach them is how to ask the right questions when they receive mental or behavioral health care, for instance. That way, they can be active in their own care.”
The 13-person team balances research publications with the creation of accessible communication resources and practical interventions. Their most thorough initiative is the POSSE Project (Eliminating Sickle Cell Disparities Among Youth), a week-long residential program for teenagers with sickle cell disease held annually on Marquette’s campus. Supported by a $450,000 grant from the Betty Irene Moore Fellowship for Nurse Leaders and Innovators, through the University of california-Davis, the POSSE Project focuses on teaching self-management techniques for potential flare-up triggers like environmental temperature and emotional stress.
The lab’s impact is deeply personal for Dr. Dora Clayton-Jones,associate professor of nursing,who first encountered sickle cell disease as a volunteer in a Chicago hospital.”I wanted to understand that more,” Clayton-Jones recalls. “I wanted to do something with my life that I was interested in. I’ve always taken care of young people and been amazed by their resilience.”
Sambhavi patel, a Marquette graduate student in bioinformatics, witnessed this resilience firsthand while working as a research assistant and volunteer for the IMPACT Lab. She served as a liaison between participants and staff, leading self-advocacy sessions focused on communicating pain management needs to friends and family.Patel was struck by the participants’ aspirations despite their ongoing health struggles. “Despite everything they were going through, I found them to be quite focused on what they want to do in their future,” she says. “It’s very arduous for them to cope through a pain episode but just seeing them so excited to go to college was a hopeful moment.”
Recently, the IMPACT lab launched “Leveling Up through Video Simulation,” a series of instructional videos designed to help patients navigate their symptoms and manage life with sickle cell disease. notably, this resource was developed in collaboration with a young adult advisory board and participants from the POSSE Project, demonstrating the lab’s commitment to a collaborative, patient-centered approach.
dr. Ong believes this partnership is crucial for future success. ”We’re excited to see how patients’ perspectives can add to the research coming out of this lab in the years to come,” she states, highlighting the ongoing dedication to serving and learning from the community impacted by sickle cell disease.
