Clubfoot CARES and Journimap Collaborate With Ponseti International Association on Patient Experience Research to Help Parents
Project Launches on World Clubfoot Day
June 3, 2020 – Iowa City, Iowa
Parents navigating their child’s clubfoot diagnosis and treatment are the focus of a new research project launched today on World Clubfoot Day 2020. Following initial 2019 research conducted by Clubfoot CARES and Journimap, Ponseti International Association will also collaborate this year on exploring how parents experience finding qualified health care providers trained in the Ponseti Method and then navigate critical treatments for their child with clubfoot.
“Finding a doctor or health care professional correctly trained in the Ponseti Method is a critical first step for most parents once they become aware of a clubfoot diagnosis,” said Dr. Jose Morcuende, Director of the Ponseti International Association and a globally recognized clubfoot expert. “Parents are the people who experience many of the challenges and decisions involved in clubfoot care and gaining insights from their perspective is important work.“
Clubfoot is the most common musculoskeletal birth deformity affecting 200,000 newborns each year. The Ponseti Method, created by Dr. Ignacio Ponseti, is the leading non-surgical method to correct clubfoot in infants.
Clubfoot CARES, a nonprofit group of moms who advocate for children with clubfoot, and Journimap, an online journey mapping application focused on patient experience and social impact, are expanding the focus of last year’s initial research project by working together with the global leaders in clubfoot research and treatments at Ponseti International Association.
Nicole Bytnerowicz serves as Co-President of Clubfoot CARES and was a founding mom with the organization. “Focusing on the needs and experiences of parents is core to the work of Clubfoot CARES. Last year we reached out to parents and learned from them how hard it can be to get initial information when selecting a doctor or specialist trained in the Ponseti Method. This year we’re going to broaden the focus of our surveys and explore some new areas to focus on so that we can help more people in the community. ”
In 2019 Clubfoot CARES invited parents to complete Journimap surveys from posts in their Facebook group that includes thousands of parents seeking both a sense of community and assistance related to clubfoot. Last year’s project generated findings from parents in the United States, Canada, United Kingdom and European countries. The 2020 project will expand both the scope of questions and geographic coverage.
“Journimap is proud to partner again with the moms at Clubfoot CARES and to also include the medical experts at Ponseti International Association,” said John Corrigan, Founder and CEO of Journimap. “The data collected in this project will create visual images, emotion measurements and other findings designed to help us better understand the experiences of these parents working to help their children. I appreciate both the importance of dedicated parents and Dr. Ponseti’s innovative work in treating clubfoot”
Initial research for this project will begin on June 3, 2020 and links to surveys, designed to gather information from the parents of children with clubfoot, will be accessible on the Clubfoot CARES Facebook page. Research will continue through the following months.
Want more info on this project? Please email firstname.lastname@example.org
Are you the parent of a child diagnosed with clubfoot? Please visit the Clubfoot CARES Facebook page to access the latest survey: https://www.facebook.com/clubfootcares