Addressing Clinical Challenges in the Care of Children with Neurodisability and Medical Complexity
Children with medical complexity often have multi-system involvement and multiple comorbidities, leading to challenges in providing care. Many of these challenges must be managed both in a clinical setting and by family caregivers in their homes. An absence of published clinical research on optimal treatment represents a significant gap in knowledge, often leading to suboptimal care. Also, pediatric training focused on CMC is minimal. This grant will support a seminar series to allow family caregivers and clinicians to learn from one another, share specialized and innovative clinical practices, and discuss critical issues that families face managing care in the home. The series will also encourage a community of practice of clinicians and families, and will promote additional research that focuses on this population of children.
A ten-session seminar series on the clinical and caregiving challenges for families and providers caring for children with medical complexity was produced over the course of one year. The sessions covered a set of eight priority challenges facing this population. Each webinar included perspectives from family leaders as well as clinical providers. Recordings of all ten sessions are available below. A journal article on lessons learned when families and clinicians partner in this type of work is forthcoming.