This study aims to develop a network to connect parents of children with medical complexity (CMC) to each other and to their key healthcare providers to identify the most common challenges for CMC in the healthcare continuum. Five parent-generated online surveys will be conducted to query parents about the care networks for their medically challenged children in order to identify what aspects of the care networks are ineffective, fragmented, or overly burdensome. Parents will also be invited to share their insights on navigating the healthcare continuum. Parents and healthcare providers will collaborate to define these challenges and propose possible solutions. Projects findings will be disseminated throughout the project to family and healthcare communities.
The projected outputs from this project are four surveys conducted to identify the obstacles parents encounter when obtaining medical care for their child with complex medical needs, a meeting of project collaborators to identify root causes and potential solutions to parent-identified problems, a survey administered to obtain additional parent input regarding these potential solutions, and a final collaborators meeting to formalize project recommendations for future research efforts.
Project collaborators include parent partners involved in the conduct of the project; parent participants who complete surveys; and healthcare providers. The healthcare providers represent different segments of the healthcare industry and include representatives from clinical care and management (Franciscan Children’s, Boston Children’s Hospital and Boston Medical Center); government agencies/government insurance (MassHealth, Massachusetts Health and Human Services, Massachusetts Department of Disability Services and the Federation for Children with Special Healthcare Needs); private insurers (BlueCross Blue Shield); and medical suppliers (New England Home Therapies/BioScrip, Home and Equipment Services Association of New England and Charm Medical).