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

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

doi:10.2196/43214

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 Pediatr Parent. 2023 Jul 5:6:e43214. doi: 10.2196/43214.

Authors

Ainslie Claire Shouldice¹, Madison Beatty^{1

2}, Sherri Adams^{1

2

3}, Blossom Dharmaraj¹, Clara Moore¹, Jennifer Nan Stinson^{1

3}, Arti Desai⁴, Leah Bartlett⁵, Erin Culbert⁶, Eyal Cohen^{1

2

7

8}, Julia Orkin^{1

2

7}

Affiliations

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.

PMID: 37405834
PMCID: PMC10357368
DOI: 10.2196/43214

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.

Keywords: care; care coordination; children; children with medical complexity; chronic condition; electronic data; engagement; health information exchange; medical; patient care planning; pediatrics; usage; utilization.

©Ainslie Claire Shouldice, Madison Beatty, Sherri Adams, Blossom Dharmaraj, Clara Moore, Jennifer Nan Stinson, Arti Desai, Leah Bartlett, Erin Culbert, Eyal Cohen, Julia Orkin. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 05.07.2023.