Evaluating Parental Caregivers’ Experiences with an Online Platform for Children with Medical Complexity and the Role of a Live Platform Coach: A Content Analysis (Preprint)

BACKGROUND Children with medical complexity (CMC) are individuals with complex chronic conditions, who have substantial healthcare needs, functional limitations, and significant healthcare utilization. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), an online patient-facing platform, was co-developed with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 provided a bundle of online supports, as well as access to a research team member acting as a live platform coach to answer questions, provide advice on usage, and address technological issues. OBJECTIVE This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. METHODS Parental caregivers (n=32) participated in biweekly sessions to provide feedback and receive real-time coaching support from the platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A content analysis was performed, and codes were categorized into key themes. The number of comments corresponding with each code were quantified. RESULTS A total of 169 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parent (range: 1-7). Thirty-two parental caregivers (82%) participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real-time during the sessions to encourage platform engagement. Four key themes were identified: 1) Live Platform Coach, 2) Barriers to Platform Usage and Technical Challenges, 3) Platform Requests and Modifications, and 4) Parent Partnership and Empowerment. CONCLUSIONS The use of the C2 platform was described by parental caregivers as a valuable tool, acting as a facilitatior for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.