Evidence map›Paper›PMID 38324351›Full record

ArticleJMIR pediatrics and parenting2024

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

Abstract read
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In one paragraph

Article in JMIR pediatrics and parenting, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Kristina Marie KokoreliasKITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-1277-472X
Tin-Suet Joan LeeKITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-6962-2700
Mark BayleyKITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.ORCID https://orcid.org/0000-0001-7860-9463
Emily SetoInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-8723-5915
Alene ToulanyDepartment of Adolescent Medicine, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0003-1238-7049
Michelle L A NelsonInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.ORCID https://orcid.org/0000-0003-2002-0298
Gina DimitropoulosFaculty of Social Work, University of Calgary, Calgary, AB, Canada.ORCID https://orcid.org/0000-0001-8871-7812
Melanie PennerDepartment of Pediatrics, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-8376-9768
Robert SimpsonSt. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-7107-8679
Sarah E P MunceKITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-0595-8395

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundStudies 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.

objectiveThis 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).

methodsA 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).

resultsParticipants 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.

conclusionsWeb-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.

Indexed as

caregiverchildhood disabilitychildrendigital healthdisabilityeHealthpatient navigationpediatricpeer supportprogramsocial supporttransitiontransitional care interventionusabilityweb-based healthweb-based interventionweb-based supportyouth

Identifiers

PMID38324351
PMCPMC10882481

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.