Co-creation and evaluation of online care maps for children with medical complexity.

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 and develop an online care map, (2) assess usability, and (3) explore its feasibility and utility from multiple perspectives.

Methods: This mixed methods study utilized an exploratory sequential design. In Phase 1 (Design and Development), the design requirements and utility of an online care map were identified through semi-structured qualitative interviews with caregivers and CTMs. In Phase 2 (Usability Testing), caregivers were monitored for errors and efficiency while completing a standardized task on the online care map. In Phase 3 (Feasibility Testing), caregivers created, updated, and shared online care maps that were housed within a patient-facing online platform accessible to CTMs. Caregivers and CTMs reported their usage of the care map and a descriptive visual content analysis of the care maps was completed. Semi-structured interviews with caregivers and CTMs were conducted to explore the use and feasibility of the online care maps. Qualitative interviews were analyzed using inductive content analysis.

Results: In Phase 1, interviews were conducted with caregivers (n = 16) and CTMs (n = 16). Four themes related to the utility and design were identified: (1) simplified snapshot, (2) envisioned use, (3) caregiver hesitancy, and (4) design modifications. The online care map prototype was modified accordingly. In Phase 2, half of the caregivers (n = 5) made one or more navigation error while using the care map. Nearly all caregivers (n = 9) completed the care map task successfully. In Phase 3, thirty-six caregivers registered on the online platform, with 70% (n = 25) creating a care map. Four themes were generated from interviews with caregivers (n = 15) and CTMs (n = 13): (1) care maps in clinical care, (2) enhanced understanding of the bigger picture, (3) uncertain value and redundancy, and (4) innovations for greater impact.

Conclusion: An online care map creation tool was co-developed with caregivers and CTMs for CMC. Caregivers and CTMs appreciated online care maps as an organizational, coordination, and communication tool, providing an enhanced understanding of the complexity of care, a holistic view of the child, and guiding care discussions. Some caregivers did not use the care map due to a perceived lack of value or redundancy. Future research should explore the integration of care maps into electronic medical records and care pathways and evaluate the impact on clinical outcomes.