Evidence map›Paper›PMID 37405834›Full record

ArticleJMIR pediatrics and parenting2023

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 and 1 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in JMIR pediatrics and parenting, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

11 authors.

Ainslie Claire ShouldiceChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0001-9095-7030
Madison BeattyChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-8893-2763
Sherri AdamsChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-1095-0101
Blossom DharmarajChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-2699-5136
Clara MooreChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-6588-8480
Jennifer Nan StinsonChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-9969-8052
Arti DesaiDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, United States.ORCID https://orcid.org/0000-0001-7596-8479
Leah BartlettRoyal Victoria Regional Health Center, Barrie, ON, Canada.ORCID https://orcid.org/0000-0001-5223-4472
Erin CulbertPaediatric Services, Credit Valley Hospital, Mississauga, ON, Canada.ORCID https://orcid.org/0000-0003-2867-4552
Eyal CohenChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0003-0112-7188
Julia OrkinChild Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-4969-2496

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundChildren 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.

objectiveThis 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.

methodsParental 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.

resultsA 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.

conclusionsParental 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.

Indexed as

carecare coordinationchildrenchildren with medical complexitychronic conditionelectronic dataengagementhealth information exchangemedicalpatient care planningpediatricsusageutilization

Identifiers

PMID37405834
PMCPMC10357368

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.