35 Co-Creation, Development and Evaluation of Online Care Maps for Children with Medical Complexity

Abstract Background Given the nature of their child’s underlying condition, parents of children with medical complexity (CMC) are relied upon to act as the primary care coordinator for their child. Tools like a care map have been shown to be effective in supporting patients and families, however, the use of an online care map that can be edited in real time has not been used and evaluated. Objectives The aims of this study were to: 1) determine the requirements and design features of a co-created online platform supporting care map creation, 2) use the platform for the development of a shareable standardized parent created care map, and 3) explore the utility and feasibility of an online care map from multiple perspectives including (i) parents, (ii) health care providers (HCPs), and (iii) non-HCPs. Design/Methods This qualitative study utilized interpretive description. Purposive sampling guided participant selection. In phase 1, the requirements and design features for a care map creation tool situated in an online patient and family facing platform were identified through semi-structured interviews with parents and HCPs/non-HCPs of CMC. This data was used to co-create the care map feature. In phase 2, parents used this online platform to create, update, and share care maps. Semi-structured interviews with parents and HCPs/non-HCPs of CMC were conducted to explore care map creation and utility. Results In phase 1, thirty-two interviews with parents (n=16) and HCPs/non-HCPs (n=16) were conducted. Four primary themes related to the requirements and design features for an online care map were identified and included: 1) useful features, 2) suggestions, 3) sharing, and 4) future use, which informed development of the online tool. In phase 2, thirty-six parents were on boarded to the online platform with n=25 (69%) choosing to create a care map. Semi-structured interview data with parents (n=15) and HCPs/non-HCPs (n=13) demonstrated four primary themes to inform the future use of online care maps: 1) clinical usage of care maps, 2) benefits of use, 3) challenges for usage, and 4) suggestions to improve usability. Conclusion Parents have valuable feedback informing the co-creation of an online platform to create and share care maps. Parents reported uncertainty in the clinical usage of care maps, however, HCPs found them very informative. Further research is needed to understand the importance of education and clarity of roles in the use of a care map for clinical care of CMC.