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.

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

Journal

JMIR pediatrics and parenting
ISSN: 2561-6722
Titre abrégé: JMIR Pediatr Parent
Pays: Canada
ID NLM: 101727244

Informations de publication

Date de publication:
07 Feb 2024
Historique:
received: 23 03 2023
accepted: 04 12 2023
revised: 13 11 2023
medline: 7 2 2024
pubmed: 7 2 2024
entrez: 7 2 2024
Statut: epublish

Résumé

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. 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). 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). 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. 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.

Sections du résumé

BACKGROUND 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 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 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 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 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.

Identifiants

DOI: 10.2196/47545 PMID: 38324351
pubmed: 38324351
pii: v7i1e47545
doi: 10.2196/47545
doi:

Types de publication

Journal Article

Langues

eng

Pagination

e47545

Informations de copyright

©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.

Auteurs

Kristina Marie Kokorelias (KM)

KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.
Department of Occupational Sciences and Occupational Therapy, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Rehabilitation Sciences Institute, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
ORCID: 0000-0002-1277-472X

Tin-Suet Joan Lee (TJ)

KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.
ORCID: 0000-0002-6962-2700

Mark Bayley (M)

KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.
Rehabilitation Sciences Institute, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada.
ORCID: 0000-0001-7860-9463

Emily Seto (E)

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Center for Digital Therapeutics, University Health Network, Toronto, ON, Canada.
Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada.
ORCID: 0000-0002-8723-5915

Alene Toulany (A)

Department of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
ORCID: 0000-0003-1238-7049

Michelle L A Nelson (MLA)

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Lunenfeld-Tanenbaum Research Institute, Sinai Health, Toronto, ON, Canada.
ORCID: 0000-0003-2002-0298

Gina Dimitropoulos (G)

Faculty of Social Work, University of Calgary, Calgary, AB, Canada.
ORCID: 0000-0001-8871-7812

Melanie Penner (M)

Department of Pediatrics, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
ORCID: 0000-0002-8376-9768

Robert Simpson (R)

St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences, Toronto, ON, Canada.
ORCID: 0000-0002-7107-8679

Sarah E P Munce (SEP)

KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.
Department of Occupational Sciences and Occupational Therapy, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Rehabilitation Sciences Institute, Temetry Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
ORCID: 0000-0002-0595-8395

Classifications MeSH