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 examine the validity of a modified Assisted Cycling Therapy bicycle for improving depression in children with Down Syndrome (DS). Seven participants completed 2x/week for 8 weeks, 30 minutes at a time of ACT, in which participants’ voluntary pedaling rates were augmented via the bicycle motor, ensuring that they were pedaling at a rate greater than their self-paced rate. Depression was measured using a modified version of the Children’s Depressive Inventory, called the CDI-2. Our study demonstrated that the scores from the CDI-2 decreased, demonstrating less depressive symptomatology after the conclusion of the 8 week intervention. Our results were interpreted via our model of the mechanisms involved in influencing the success of ACT. Future research would include a greater sample size, a more relevant measure of depressive scores, and a consistent data collection environment. However our initial pilot study showed promising results for improving mental health in children with DS.

Research has shown the benefits of exercise on people with (DS), and how it affects their quality of life (Maïano et al. 2019). However, many studies have also shown that the majority of people with DS do not meet the national minimum requirements for physical activity per day (Phillips et al. 2011). The current study will focus on Pediatric Assisted Cycle Therapy (PACT) as exercise and specifically its effects on children with DS. The goal is to improve the general behavioral skills of children with DS, which in turn can improve their quality of life. We predict that, based on pilot data (Gomez, 2015; Parker, 2016), GLTEQ will increase their total activity score following 8 weeks of PACT in young children with DS. The Godin Leisure Time Exercise Questionnaire was used to measure the participants’ participation levels in leisure time activity. Participants were involved in an 8-week intervention, in which they biked (PACT) for 30 minutes, twice a week. GLETQ was measured pre and post intervention and assessed using the scale provided by the GLETQ. The data from this study has shown a positive correlation between Leisure Time Activity and PACT. Overall, a mean increase in raw activity score in the GLETQ was shown.