2024 Funded Micro Grant
Adaptations to Improve the Holistic Patient Care Experience for Little People at Johns Hopkins
Julie Hoover-Fong, Kira Lurman, Colleen Gioffreda, Amy Patterson, Dora Knight, Mari Groves, Paul Sponseller, David Tunkel, Laura Sterni
Department of Genetic Medicine, Greenberg Center for Skeletal Dysplasias
A common presenting feature of many skeletal dysplasias include short stature (dwarfism). There is a rich history, culture, identity associated with being a Little Person (LP), or individuals with dwarfism. While the Center aspires to be a safe and supportive environment for its patients, which includes meeting their basic accessibility needs, there are still many areas of the hospital that are inaccessible. This poses a risk to LPs’ physical, cognitive, and emotional well-being. For example, ill-fitting hospital gowns and limited availability of step stools with handrails may increase the risk of a fall post major surgery, when surgery is common in this population. They also experience modified patient care when blood pressure cuffs do not fit appropriately and must be taken on a forearm or using a child cuff.
The Center hopes to use funding to increase accessibility on all fronts for its patients. Working with designers and adaptive organizations, they will create a set of reusable gowns for LPs, so that LPs have access to appropriately sized gowns wherever they are in the hospital. They will also purchase bathroom accessibility equipment and diversify their blood pressure cuff sizes. With these modifications, we hope to see fewer falls in the hospital for LPs and improved satisfaction with their overall healthcare experience.