Caregivers’ Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis

JMIR Pediatrics and Parenting · 11 authors, 8 centres

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TL;DR

A thematic analysis of feedback from 33 parental caregivers of children with medical complexity found that a live platform coach was a critical component for educating caregivers on using the Connecting2gether digital health platform and addressing technical issues.

Full summary

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This study used a thematic analysis of feedback from 166 biweekly coaching sessions with 33 parental caregivers to understand their experiences using the Connecting2gether (C2) web- and mobile-based platform for children with medical complexity. Caregivers described C2 as a valuable tool for enhancing care coordination and communication, with the live platform coach being critical for education and troubleshooting. The study is a subset of a larger feasibility assessment. Limitations included varied data recording methods due to remote sessions, potential interviewer bias from using summarization, and a participant sample that may not represent lower socioeconomic or non-English-speaking groups. The authors conclude that future patient-facing platforms should consider a live coach to improve utility.

STUDY TYPE

other

SPECIALTY

pediatrics

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100% · A

ORIGINAL PAPER

PMC10357368

Caregivers’ Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis

JMIR Pediatrics and Parenting

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ABSTRACT

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.

CITATION EXPORT

Ainslie Claire Shouldice, Madison Beatty, Sherri Adams et al.. Caregivers’ Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis. JMIR Pediatrics and Parenting. (2023). https://doi.org/10.2196/43214

AUTHORS

11 · 8 CENTRES

Ainslie Claire Shouldice, Madison Beatty, Sherri Adams, Blossom Dharmaraj, Clara Moore, Jennifer Nan Stinson, Arti Desai, Leah Bartlett, Erin Culbert, Eyal Cohen, Julia Orkin

1 Child Health Evaluative Sciences SickKids Research Institute The Hospital for Sick Children Toronto, ON Canada
2 Division of Pediatric Medicine The Hospital for Sick Children Toronto, ON Canada
3 Lawrence S Bloomberg Faculty of Nursing University of Toronto Toronto, ON Canada
4 Department of Pediatrics University of Washington School of Medicine Seattle, WA United States
5 Royal Victoria Regional Health Center Barrie, ON Canada
6 Paediatric Services Credit Valley Hospital Mississauga, ON Canada
7 Department of Pediatrics University of Toronto Toronto, ON Canada
8 Institute of Health Policy, Management and Evaluation University of Toronto Toronto, ON Canada

EDITOR / REVIEWER

Sherif Badawy, Varadraj Gurupur, Heidi Holmen