Family LENS (Lived Experience in Scholarship for Children with Medical Complexity) is both a research study and educational curriculum for medical and allied health learners.
Family LENS was inspired families in the Madison Pediatric Complex Care program. Initially, a parent from the program interviewed 20 other families to learn about their experiences navigating the healthcare system and raising a child with medical complexity – the joys, challenges and reality of it all. These interviews informed a curriculum for medical learners and inspired a research study in collaboration with Marshfield Clinic Research Institute. The next phase of research will involve interviews with families from the Marshfield Clinic Complex Care program. We hope to learn about the experiences of families with a child with medical complexity in the more rural areas of Wisconsin.