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

Abstract

Background Care maps are a caregiver-created diagrammatic tool to support the care of children with medical complexity (CMC). They provide a high-level overview of care, allowing the care team to appreciate the interrelatedness of medical and non-medical aspects of care. Limitations currently exist for the usability, shareability, and integration of care maps into clinical care as they are typically paper-based and caregiver held. Therefore, the aims of the study were to 1) collaborate with caregivers and care team members (CTMs) of CMC to determine the design requirements of an online care map, and 2) explore its usability and feasibility from multiple perspectives.Methods This mixed methods study utilized an explanatory sequential design. In Phase 1 (Design and Development), the design features for an online care map were identified through semi-structured interviews with caregivers and CTMs. An online care map creation tool, housed within an online patient-facing platform, was created. In Phase 2 (Feasibility Testing), caregivers created, updated, and shared online care maps with CTMs. A usage survey and descriptive visual content analysis of the care maps was completed. Semi-structured interviews with caregivers and CTMs were conducted to explore the usability and feasibility of the online care maps.Results In Phase 1, interviews were conducted with caregivers (n = 16) and CTMs (n = 16). Three primary themes related to the design requirements were identified: 1) useful features, 2) suggestions, and 3) future use. In Phase 2, thirty-six caregivers registered on the online platform, with 70% (n = 25) creating a care map. Semi-structured interview data with caregivers (n = 15) and CTMs (n = 13) generated four primary themes: 1) clinical usage, 2) benefits, 3) challenges, and 4) suggestions to improve usability.Conclusion The development of a co-designed online care map tool was shown to be usable and feasible. Caregivers expressed how the care maps provided a holistic picture of their child and CTM’s described an enhanced ability to provide clinical care as it provided information that could have great impact on care decisions. Caregivers and CTMs desired that it be accessible in the EMR for easy distribution and access. Opportunities exist to explore integration into mainstream electronic medical records and pathways for care.