TY  - JOUR
AU  - Shouldice, Ainslie Claire
AU  - Beatty, Madison
AU  - Adams, Sherri
AU  - Dharmaraj, Blossom
AU  - Moore, Clara
AU  - Stinson, Jennifer Nan
AU  - Desai, Arti
AU  - Bartlett, Leah
AU  - Culbert, Erin
AU  - Cohen, Eyal
AU  - Orkin, Julia
PY  - 2023
DA  - 2023/7/5
TI  - Caregivers’ Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis
JO  - JMIR Pediatr Parent
SP  - e43214
VL  - 6
KW  - care coordination
KW  - care
KW  - children with medical complexity
KW  - children
KW  - chronic condition
KW  - electronic data
KW  - engagement
KW  - health information exchange
KW  - medical
KW  - patient care planning
KW  - pediatrics
KW  - usage
KW  - utilization
AB  - Background: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. 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), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing 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=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live 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 thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that 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: Parental caregivers describe C2 as a valuable tool, acting as a facilitator 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. 
SN  - 2561-6722
UR  - https://pediatrics.jmir.org/2023/1/e43214
UR  - https://doi.org/10.2196/43214
UR  - http://www.ncbi.nlm.nih.gov/pubmed/37405834
DO  - 10.2196/43214
ID  - info:doi/10.2196/43214
ER  -