A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

Kristina Marie Kokorelias; Tin-Suet Joan Lee; Mark Bayley; Emily Seto; Alene Toulany; Michelle L A Nelson; Gina Dimitropoulos; Melanie Penner; Robert Simpson; Sarah E P Munce

doi:10.2196/47545

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study

JMIR Pediatr Parent. 2024 Feb 7:7:e47545. doi: 10.2196/47545.

Authors

Kristina Marie Kokorelias^{1

2

3}, Tin-Suet Joan Lee¹, Mark Bayley^{1

3

4}, Emily Seto^{5

6

7}, Alene Toulany⁸, Michelle L A Nelson^{5

9}, Gina Dimitropoulos¹⁰, Melanie Penner¹¹, Robert Simpson¹², Sarah E P Munce^{1

2

5

3}

Affiliations

¹ KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.
² Department of Occupational Sciences and Occupational Therapy, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
³ Rehabilitation Sciences Institute, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁴ Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada.
⁵ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
⁶ Center for Digital Therapeutics, University Health Network, Toronto, ON, Canada.
⁷ Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada.
⁸ Department of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
⁹ Lunenfeld-Tanenbaum Research Institute, Sinai Health, Toronto, ON, Canada.
¹⁰ Faculty of Social Work, University of Calgary, Calgary, AB, Canada.
¹¹ Department of Pediatrics, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
¹² St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences, Toronto, ON, Canada.

PMID: 38324351
PMCID: PMC10882481
DOI: 10.2196/47545

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. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted.

Objective: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT).

Methods: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero).

Results: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that 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 and the choice to remain anonymous to other participants.

Conclusions: Web-based 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, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

Keywords: caregiver; childhood disability; children; digital health; disability; eHealth; patient navigation; pediatric; peer support; program; social support; transition; transitional care intervention; usability; web-based health; web-based intervention; web-based support; youth.

©Kristina Marie Kokorelias, Tin-Suet Joan Lee, Mark Bayley, Emily Seto, Alene Toulany, Michelle L A Nelson, Gina Dimitropoulos, Melanie Penner, Robert Simpson, Sarah E P Munce. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 07.02.2024.