Nicole Miller of Springville was in Des Moines April 1 for the 14th annual Research in the Capitol event.
Currently studying at Iowa State University, Miller and her research partner, Sydney Ellis of Pleasant Hill, were one of 20 projects selected from ISU to present at the Capitol for the annual event.
The project Miller was working on focused on better understanding the needs of parents of children living with “complex chronic conditions.” What exactly that entails can be quite wide ranging.
“It’s basically any medical condition that requires the child to receive constant medical care, or that the prognosis is either uncertain or likely not a positive outcome,” she explained.
The project interviewed parents involved in the SHINE program, Sharing, Healing, Inspiring, Nurturing, Enduring, at Blank’s Children’s hospital in Des Moines, which “provides perinatal and pediatric palliative care services.” Miller said the program acted like case workers for parents, helping them to navigate various laws.
The group took their three major findings and developed a model to help health care professional better understand the needs of parents with children in those conditions. The findings were three-fold. First, was the importance of emotional intelligence, which included reframing obstacles into opportunities, validating emotions and sharing information with parents in the best way possible.
Secondly, was helping parents “aggregate social capital,” like referrals, care coordination and connecting parents with informal support networks. Miller said Facebook support groups were a very popular form of “informal support groups” in interviews with parents.
Finally, the parents discussed the importance of empowerment through education by coordinating care, instilling confidence and establishing partnerships. This aspect helps parents navigate the day to day nature of the care.
For the project, the group talked to 18 parents of kids in that situation, 17 mothers and one father. The interviews would last anywhere from 30 to 90 minutes. Miller joined onto the research team after the project had already started and said listening to the interviews with the parents was one of the most powerful parts of the project.
“I’m really passionate about this population of parents because when you immerse yourself into their stories…to just feel their emotion and what they’ve been through…it’s very sobering to listen to,” she said.
Miller joined the project through her work in the family health communication research lab, which started about two years ago.
Though her future career hopes lean more into the human resources side of things, the project has shown her how important it is to do something you’re passionate about.
“It’s meaningful work,” she said. “We have the potential to contribute to actually helping parents and changing their lives.
Speaking on Friday, Miller said she, Ellis and their mentor, Dr. Katherine Rafferty, are looking forward to the opportunity that being in the Capitol represents.
“Ultimately, I think we’re looking most forward to having the ability to share (the) stories of these parents and help them to receive the support that they are looking for, and that’s through legislation, through financial means,” she said. “Because right now, parents just don’t have that control that they need over their child’s care.”
They hope to get across the importance of funding programs that can help parents who find themselves in this situation.
Information on the study can be found on the group’s website at familyhealthcomm.com.