34 How online care plans promote partnership, trust, and cohesive care for children with medical complexity

Abstract

Abstract Background Children with medical complexity (CMC) require care coordination across hospital, home, and community settings. The use of a medical care plan supports care coordination; however, the content of the care plan is often controlled by the health care team, limiting the ability of parents to edit in real time. It has been suggested that these limitations could be improved by using online care plans shared between parents of CMC and care team members (CTM). Objectives The objective of this study was to explore the perspectives of parents and care team members of children with medical complexity following the use of an online care plan. Design/Methods This qualitative study utilized grounded theory (GT) to explore parent and CTM experiences using an online editable medical care plan. Parents of CMC were invited to use a novel online patient-facing platform to coordinate their child’s care and edit/share their child’s care plan. They were also able to invite any of their child’s CTM to use the platform. Parents could make changes to the care plan including adding, editing, or deleting information. After 6 months, parents and CTM participated in semi-structured interviews aimed at exploring their experiences using the online care plan. Consistent with GT, constant comparative analysis was used as data analysis occurred concurrently with interviews, which allowed for theoretical sampling and theory generation. Results Thirty-five semi-structured interviews with parents (n=15) and CTM (n=20) were conducted. Interviews revealed three major themes (9 sub-themes): 1) navigation of uncharted roles (trust, role sharing, responsibility), 2) requirements for success (collaborative review, electronic medical record integration, online access), and 3) cohesive care (autonomy, accessibility and convenience, same page). These themes informed the creation of a theory outlining how and why a robust online shared care plan can improve care for CMC. Both parents and CTM identified the uniqueness of this care plan located on the online platform as it promoted collaboration and trust whilst allowing for increased autonomy and convenience. Conclusion Online shared care plans, implemented in a safe and thoughtful manner, promote cohesive partnering between parents and care team members while allowing easy access to information. This facilitates care coordination and a cohesive partnering between parents and care team members involved in the care of CMC.