Understanding neurodevelopmental outcomes in children who live at home with invasive mechanical ventilation (IMV)

In order to understand more about the process of the transition home from the hospital as well as the daily experiences of families of children with HMV and their development our team followed children for two years after they initially went home from the hospital with a tracheostomy and a ventilator.  Throughout the course of the study families participated in two interviews. The first interview occurred 30 days after they initially went home and then a follow-up interview occurred 6 months later. In addition, we completed developmental testing including the Capute scales, MCHAT-R, and WIDEA at the initial meeting, 6 month follow-up, and one and two year intervals. Findings from this study have resulted in four papers published in academic journals with additional secondary analyses of the interviews ongoing.

Understand the workforce challenges in pediatric home health

In order to describe home health nurses’ experiences working with children with HMV assistance in the community. Dr. Sobotka interviewed 20 home health nurses about their experiences working with children with HMV and their families. The analysis of these interviews has resulted in two papers published in academic journals with additional ongoing secondary analyses.

Understanding the role of care coordinators for children with medical

complexity, medical technology dependence, and home nursing.

In a project funded by the University of Chicago Patient Centered Outcomes Research K21 training program, Dr. Sobotka conducted 15 interviews of care coordinators who work with families enrolled in the DSCC home care program. DSCC is a title five program which serves children with medical complexities in the state of Illinois. The interviews included topics related to the transition home from the hospital, home care nursing, respite care and readmissions. This project has yielded three papers in academic journals.

National Practice patterns for the Discharge and Home Nursing and Community

Support of Children with IMV. 

A collaboarting team of diverese providers that included Drs. Beery, Goodman, Agrawal, Grahm and Sobokta used purposesful snapling metod to genate a key informant live of IMV provderes across the US. The study team found that children with IMV assisatnce recieve care from diverese with varied team structures who universially expereince difficult trainstions to home care due to home nursing shoratages. 

Disparities in Access to Diagnosis and Therapy Services for Minoritized Children with Disabilties. 

Dr. Sobotka used mixed methodogy to explore trends in diangosis and servides for Black and Hispanic children with disabilties. The 2012 Medicaid Analytisc Extract data was used by the research team to identifty children with disabilities across the country who are insured by Medicaid.