Clinical Research Studies

The overarching objective of this study is to make it easier for parents of children with medical complexity (CMC) to take care of their children after discharge home from the hospital and reduce the chance of post-hospitalization morbidity (meaning bad outcomes such as readmissions) after discharge. CMC, or those with multiple chronic conditions, progressive conditions, or technology dependence, are at high risk for post-hospitalization morbidity. This study will take place in 3 phases at 2 sites: Bellevue Hospital Center (BHC) and Hassenfeld Children’s Hospital (HCH). We will recruit parents of CMC with a prior or current admission at these two sites, as well as pediatricians who care for these children in the inpatient setting for the following 3 aims: - In Aim 1, we will interview parents of CMC and pediatricians to understand their views on what makes it challenging, and what can make it easier, for parents to understand and follow the instructions they get from the hospital about how to take care of their CMC after leaving the hospital. We will also ask pediatricians what may make it difficult to provide relevant education to families. We hypothesize that we will identify several contributing factors. - In Aim 2, we will design a tool to make it easier for parents to understand and follow the discharge instructions for their CMC. We will use structure of existing tool, findings from Aim 1, and extensive interviews and testing of the tool with parents and pediatricians as we design the new tool. We hypothesize that we will successfully design a tool that will be usable by both parents and pediatricians. - In Aim 3, we will use a randomized controlled trial (RCT) to study the impact of the tool on parent comprehension and adherence (or how well they can follow) their child's discharge instructions, as well as its impact on post-discharge morbidity (such as readmissions and emergency department visits). Parents will be randomized to either receive usual hospital care and instructions or the intervention/tool (in addition to the usual care and instructions). We will also ask parents who receive the intervention about its usability. We hypothesize that, compared to subjects who receive usual care, subjects in the intervention group will have higher comprehension and adherence, and their children will have lower post discharge morbidity. Parents will find the intervention to be usable.