Evidence map›Paper›PMID 36310386›Full record

ArticlePhysical & occupational therapy in pediatrics2023

The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey.

Margaret Waltz, Courtney Canter, Jeannette T Bensen, Jonathan S Berg, Ann Katherine M Foreman, Tracey L Grant, Kristen Hassmiller Lich, Angelo Navas, Julianne M O'Daniel, Bradford C Powell and 3 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Physical & occupational therapy in pediatrics, 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

13 authors.

Margaret WaltzDepartment of Social Medicine, University of North Carolina, Chapel Hill, NC, USA.
Courtney CanterDepartment of Anthropology, University of North Carolina, Chapel Hill, NC, USA.
Jeannette T BensenDepartment of Epidemiology, University of North Carolina, Chapel Hill, NC, USA.
Jonathan S BergDepartment of Genetics, University of North Carolina, Chapel Hill, NC, USA.
Ann Katherine M ForemanDepartment of Genetics, University of North Carolina, Chapel Hill, NC, USA.
Tracey L GrantDepartment of Genetics, University of North Carolina, Chapel Hill, NC, USA.
Kristen Hassmiller LichDepartment of Health Policy and Management, University of North Carolina, Chapel Hill, NC, USA.
Angelo NavasDepartment of Pediatrics, University of North Carolina, Chapel Hill, NC, USA.
Julianne M O'DanielDepartment of Genetics, University of North Carolina, Chapel Hill, NC, USA.
Bradford C PowellDepartment of Genetics, University of North Carolina, Chapel Hill, NC, USA.
Christine M RiniDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Brooke S StaleyDepartment of Epidemiology, University of North Carolina, Chapel Hill, NC, USA.
R Jean CadiganDepartment of Social Medicine, University of North Carolina, Chapel Hill, NC, USA.

Funding

North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2U01HG006487 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI BERG, JONATHAN S, POWELL, BRADFORD C. · 2012 to 2021
$22.7M
The Genetic Epidemiology of Heart, Lung, and Blood TraitsTraining Grant (GenHLB)T32HL129982 · NHLBI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI Christy Leigh Avery, KAREN L. MOHLKE · 2016 to 2026
$3.8M
NHGRI NIH HHS U01 HG006487NHLBI NIH HHS T32 HL129982
6 · The paper itself

Abstract

aimsChildren with disabilities and rare or undiagnosed conditions and their families have faced numerous hardships of living during the COVID-19 pandemic. For those with undiagnosed conditions, the diagnostic odyssey can be long, expensive, and marked by uncertainty. We, therefore, sought to understand whether and how COVID-19 impacted the trajectory of children's care.

methodsWe conducted semi-structured qualitative interviews with 25 caregivers who, prior to the pandemic, were on a diagnostic odyssey for their children.

resultsMost caregivers did not report any interruptions to their child's diagnostic odyssey. The greatest impact was access to therapy services, including the suspension or loss of their child's in-person therapeutic care and difficulties with virtual therapies. This therapy gap caused caregivers to fear that their children were not making progress.

conclusionAlthough much has been written about the challenges of diagnostic odysseys for children and their families, this study illustrates the importance of expanding the focus of these studies to include

Indexed as

CaregiversCOVID-19ChildFearHumansPandemicsCOVID-19diagnostic odysseypediatric therapiesrare or undiagnosed conditionstherapeutic odyssey

Identifiers

PMID36310386
PMCPMC10079636

What OpenQuestion holds

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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.