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.

The Wonderbox research project was the product of a creative health collaboration between the Edson College of Nursing and Health Innovation and the Herberger Institute for Design and the Arts at Arizona State University, as well as the Childsplay AZ theater in Tempe, Arizona. This ongoing project began in the summer of 2021. It was funded by the National Endowment for the Arts, and IRB approval was obtained for the project. Each participant signed informed consent documents prior to the start of the survey and the intervention. This research project aimed to explore ways in which stress can be alleviated in parents and caregivers who have medically complex children using creative play and interactive theater interventions. This study used surveys to determine how the Wonderbox activities impacted the perceived stress, well-being, overall family functioning, and quality of life of parents who have medically complex children. This study consisted of parents or caregivers of children between the ages of 6 and 17 with any type of medical complexity who spoke English. There were 31 families who participated in this study. The family APGAR (family functioning), perceived stress scale, quality of life evaluation, and the WHO-5 well-being index were measured before and following the intervention. The quality of life evaluation post-test measure was shown to be statistically significant, and the perceived stress increased but was not statistically significant. The Family APGAR had no change. In qualitative results, only five families reported their results in ClassDojo, and there was no communication between the researchers and the parents of these children. Overall, the study was successful in significantly improving quality of life and caused no harm to the participants in other areas of evaluation. Future studies should consider broadening the size of the population of the next cohort, as well as promoting better communication among these families to obtain more qualitative results.