It is well known that the lack of care coordination in the healthcare system causes numerous problems including cost inefficiency and inconsistent care, specifically for complex pediatric and adult patients. Many pediatric patients have complex medical and social service needs which can be expensive for both the patient’s parents and the general healthcare system. Therefore, it is difficult for the healthcare system to deliver the highest quality care possible, due to the number of appointments that have to be scheduled (with some being out of state), the large volume of physical health records, and overall lack of time parents have to coordinate this care while also caring for themselves and other family members. It is integral to find a more efficient way to coordinate care for these patients, in order to improve overall care, cost efficiency, and outcomes. <br/>A number of stakeholders in Arizona came together to work on this problem over several years. They were funded through a PCORI Eugene Washington Engagement grant to investigators at ASU. This project, Take Action for Arizona's Children through Care Coordination: A Bridge to Action was developed in order to further develop a research agenda and build the network (PCOR). Regional conferences were conducted in Flagstaff, Yuma, Phoenix, and Tucson, as well as a final capstone conference held in Phoenix. At these conferences, frustrations, suggestions, and opinions regarding Children with Special Health Care Needs (CSHCN) and navigating the healthcare system were shared and testimonials were transcribed.<br/>This study focused on the capstone conference. The study design was a strategic design workshop; results of the design analysis were analyzed qualitatively using descriptive content analysis. Themes described parent’s common experiences navigating the system, impacts resulting from such experiences, and desires for the care coordination system. Quotes were then grouped into major themes and subthemes for the capstone conference. After these themes were determined, the overarching goals of stakeholders could be assessed, and implementation projects could be described.

Brave Bears was a Barrett creative project that operated under local non-profit organizations, Amanda Hope Rainbow Angels and Arizona Women’s Recovery Center. Amanda Hope Rainbow Angels provides support and education for children fighting cancer and their families. Arizona Women’s Recovery Center provides rehabilitation programs for women fighting substance abuse and housing for the women and their children. The Brave Bears Project was focused on helping children in these situations cope with the trauma they are experiencing. The children received a teddy bear, which is a transitional object. In addition, a clay pendant with the word, “brave” pressed into it was tied around the bear’s neck with a ribbon. A poem of explanation and encouragement was also included.<br/><br/>The teddy bear provided comfort to children experiencing emotionally distressing situations as they receive treatment for their illness or as their mom undergoes rehabilitation. This can be in the form of holding the teddy bear when they feel frightened, anxious, lonely or depressed. The “brave” pendant and poem seek to encourage them and acknowledge their trauma and ability to persevere.

The purpose of this study was to evaluate the pandemic’s effect on the psychosocial and physical quality of life of children with and without classic galactosemia and their parents in the Babble Boot Camp. The Babble Boot Camp within ASU’s Speech and Hearing Genetics Lab provides early intervention speech therapy for children with classic galactosemia (CG), evaluating their speech progress as well as other metrics related to stress and quality of life. In this study, the Quality of Life questionnaire (Varni, 1998) was used to measure how three pandemic stages (pre-pandemic, intense-pandemic, post intense-pandemic) affected the entire participant population, those with CG children compared to typically developing, and each family member (father vs. mother vs. child). These factors were combined within an integrated regression model to see driving factors and correlations within responses. The main results were that the pandemic itself did not have a significant effect, but there was quite a significant impact on psychosocial health when comparing affected vs unaffected groups. Evaluating an integrated regression model with the consideration of all three pandemic phases, the results show that the factor driving group differences over time was the affectation of the participant for psychosocial health and family member for physical health. When looking at just pre-pandemic and intense pandemic phase, both models in their entirety were significant, showing that all predictors (affectation, pandemic phase, and family member) drove health differences. Lastly, the findings of the study show that there were significant correlations between the health scores of fathers, mothers, and children throughout the different stages of the pandemic.

Studies during and following the height of the Coronavirus pandemic show that psychological and physical health levels decrease, due to factors such as reduced human contact and anxiety. However, there is little to no research on how quality of life levels would change over the course of the pandemic for families who have the added stress of having a child with a developmental complication. To answer this question, this study utilized longitudinal data from the Babble Boot Camp, a project under the ASU Speech Language Genetics Lab, to analyze quality of life measures in families who have children with Classic Galactosemia (CG). CG is an inborn metabolic disorder that causes an intolerance to galactose, a sugar in dairy, the effects of which can be deadly. These children often show signs of developmental delays in multiple areas within the first few years of life. Studying quality of life surveys before, during, and after the most intense phase of the pandemic, this study investigates the difference between these families and those with typical children.