Evidence map›Paper›PMID 39950037›Full record

ArticleProceedings of the ACM on human-computer interaction2024

It's About the Journey - Capturing Stories of the Fluctuating Experiences of Youth Kidney Transplant Patients.

Julia C Dunbar, Wanda Pratt, Emily Bascom, Cara Currier, Joseph William Tan Garcia, Jodi Smith, Jaime Snyder, Ari H Pollack

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Proceedings of the ACM on human-computer interaction, 2024. 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

8 authors.

Julia C DunbarUniversity of Washington, Information School, USA.ORCID 0000-0003-1684-8463
Wanda PrattUniversity of Washington, Information School, USA.ORCID 0000-0003-4035-0198
Emily BascomUniversity of Washington, Human Centered Design and Engineering, USA.ORCID 0000-0002-5140-6567
Cara CurrierWashington State University, Elson S Floyd School of Medicine, USA.ORCID 0000-0001-7095-6305
Joseph William Tan GarciaUniversity of Washington, Information School, USA.ORCID 0000-0003-1280-3719
Jodi SmithSeattle Children's Hospital, Division of Nephrology & University of Washington, School of Medicine, Department of Pediatrics, USA.ORCID 0000-0002-0365-4267
Jaime SnyderUniversity of Washington, Information School, USA.ORCID 0000-0002-2302-4895
Ari H PollackSeattle Children's Hospital, Division of Nephrology & University of Washington, School of Medicine, Department of Pediatrics & University of Washington, Information School, USA.ORCID 0000-0002-5850-838X

Funding

Transform Dissemination and Implementation Science in CTSA ProgramsUL1TR002319 · NCATS · UNIVERSITY OF WASHINGTON · PI John K. Amory · 2017 to 2026
$100.0M
Kids CoLab - Supporting collaborative decision making with youth impacted by chronic kidney diseaseR01DK131134 · NIDDK · SEATTLE CHILDREN'S HOSPITAL · PI Ari Pollack · 2022 to 2026
$3.1M
iKNOW IT: Increasing Knowledge in Pediatric Kidney Transplant Patients through Information TechnologyK23DK117017 · NIDDK · SEATTLE CHILDREN'S HOSPITAL · PI POLLACK, ARI · 2018 to 2022
$944k
NCATS NIH HHS UL1 TR002319NIDDK NIH HHS K23 DK117017NIDDK NIH HHS R01 DK131134
6 · The paper itself

Abstract

Youth who undergo a kidney transplant can experience a fluctuation of successes and challenges throughout their chronic illness journey. Designing to capture their journey could help youth to reflect on their experiences, collaborate on their care, and be empowered to live their lives to the fullest. We interviewed 11 youth kidney transplant patients and 12 caregivers to elicit their transplant journey experiences. We found that probing participants about specific parts of their transplant journey gave them structure to tell us rich stories about their experiences. Based on our findings, we discuss informing the design of a tool to support the capturing of stories for youth with chronic illnesses. Designing such tool could help youth and their caregivers to identify barriers, support reflection, and promote self-efficacy. Youth with chronic illnesses already have to change so many aspects of their lives to accommodate their illness, however, by giving them a platform to capture their chronic illness journey, it could encourage them to take more control of their lives and better collaborate with others.

Indexed as

chronic illness journeypediatric kidney transplantationquality of lifestorytelling

Identifiers

PMID39950037
PMCPMC11824542

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Registered trials

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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.