Evidence map›Paper›PMID 39864504›Full record

ArticleThe Journal of pediatrics2025

Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents.

Miriam C Shapiro, Kathryn Detwiler, Jennifer Shepard, Talia Bernhard, Xiaobai Li, Renee D Boss, Vanessa N Madrigal

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of pediatrics, 2025. 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
  2. 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

7 authors.

Miriam C ShapiroDepartment of Pediatrics, University of Minnesota, Minneapolis, MN; Center for Bioethics, University of Minnesota, Minneapolis, MN. Electronic address: mshapiro@umn.edu.
Kathryn DetwilerDepartment of Pediatrics, Children's National Hospital, Washington, DC.
Jennifer ShepardDepartment of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.
Talia BernhardEthics Program, Children's National Hospital, Washington, DC.
Xiaobai LiNational Institutes of Health, Bethesda, MD.
Renee D BossDepartment of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD; Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.
Vanessa N MadrigalDepartment of Pediatrics, Children's National Hospital, Washington, DC; Ethics Program, Children's National Hospital, Washington, DC.

Funding

Intramural NIH HHS Z99 CL999999
6 · The paper itself

Abstract

objectiveTo understand parents' experiences of ethical challenges in the care of children with chronic and serious medical conditions and what resources they access for support. STUDY

designWe recruited English-speaking parents of children with complex and serious medical conditions via family advocacy groups to complete an electronic survey from October 2022 through February 2023. We queried respondents' experiences with specific ethical challenges in the care of their child, whether their concerns persisted, and what resources they accessed. Respondents also reported demographics, educational backgrounds, financial resources, and their child's medical needs.

resultsTwo hundred eighteen parents completed surveys. Parents reported experiencing each of the 15 presented ethical challenges with varying frequency. More than half of parents reported residual distress in 6 of 15 ethical challenges. Demographic variables (gender, relationship status, time since medical challenge, and ethnicity) were not associated with level of distress related to ethical challenges. When facing challenges, respondents most commonly communicated with family members, friends, doctors, and other parents of children with medical problems, accessed the internet, and relied on their instincts or prayer/meditation.

conclusionsParents of children with medical complexity experience ethical challenges in the care of their children, although covering a broader range of experiences than typically considered by clinicians to have ethical dimensions. Many of these challenges leave residual distress. The resources that families report accessing to navigate these challenges are ones that typically do not have training, background, or specificity to medical ethics.

Indexed as

ParentsPediatricsAdolescentAdultChildChild, PreschoolChronic DiseaseFemaleHumansMaleMiddle AgedSurveys and Questionnairesbioethicschildren with medical complexitydecision-making

Identifiers

PMID39864504
PMCPMC12013584

What OpenQuestion holds

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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.