Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Mar 23, 2023
Date Accepted: Dec 4, 2023
A Web-Based Peer-Patient Navigation Program for Youth Living with Childhood-Acquired Disabilities Transitioning from Pediatric to Adult Care: Description of Preferences and Initial Feedback of CONNECT
ABSTRACT
Background:
Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. A better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted.
Objective:
To describe the preferred adaptations of an existing web-based platform from the perspective of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, herein referred to as CONNECT (Compassionate Online NavigatioN to Enhance Care Transitions).
Methods:
A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (n=16) and their caregivers (n=7). Semi-structured interviews and focus groups were conducted, digitally-recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software.
Results:
Participants desired a program that incorporated: a) self-directed learning, b) a library of reliable health and community resources, and c) emotional and social supports. Based on participants’ feedback, CONNECT was deemed satisfactory as it was believed the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care as well as the choice to remain anonymous to other participants.
Conclusions:
Online patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, healthcare monitoring, and health and social care resources. Future research is needed to test the feasibility, acceptability, useability, usage, and effectiveness of CONNECT among youth with childhood-onset disabilities.
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