#30-Reflecting Real Patient Experiences: Innovative Clinical Research Methods

In this episode, we are exploring innovative research methodologies in genetics, including narrative and visual methods, conversation analysis and body mapping. Our guests highlight using these methods to drive inclusive and diverse research as well as providing a more nuanced understanding of the lived experiences of families.

Segment 1: Defining joy after a genetic diagnosis: A narrative inquiry

Guest Bio:

UNC Greensboro Genetic Counseling Program graduate Jordan Miller earned a masters degree in genetic counseling in 2025 and currently works as a prenatal and cancer genetic counselor at Prisma Health in Columbia, South Carolina. In addition to clinical practice, Jordan serves as part of the faculty for the University of South Carolina Genetic Counseling program, where she is passionate about supporting and mentoring future genetic counselors.

Following a personal experience of finding joy after a devastating family diagnosis, Jordan developed a deep passion for exploring how joy, hope, and humanity can remain central to patient care. Her work and advocacy focus on fostering meaningful conversations about compassionate care and the ways healthcare professionals can help patients and families find moments of connection and resilience during difficult experiences.

In this segment we discuss:

- The use of qualitative narrative inquiry and in-person observations, rather than standard surveys, to capture the visceral, underreported experience of joy following a family genetic diagnosis.

- The "FERN" grounded framework (Focusing on the present, Embracing life, Redefining joy, and Normalizing the journey) and how its core themes emerged from family narratives.

- How healthcare providers and communities can foster joy and humanize care by interacting with pediatric patients as individuals rather than focusing solely on their diagnosis.

- Balancing grief and joy in healthcare conversations without pushing toxic positivity, highlighting how small daily moments of joy help families hold onto hope.

Segment 2: Expanding the methodological repertoire: Integrating multimodal approaches in genetic counseling research

Guest Bios: