Evidence map›Paper›PMID 41027595›Full record

ArticleJournal of pediatric psychology2026

Siblings of young children with congenital heart disease: parent perspectives from a crowdsourcing study.

Christina M Amaro, Melissa A Alderfer, Sarah E Wawrzynski, Jennifer Christofferson, Linda G McWhorter, Abigail C Demianczyk, Anne E Kazak, Erica Sood

Abstract read
In one paragraph

Article in Journal of pediatric psychology, 2026. 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

8 authors.

Christina M AmaroCenter for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0003-2194-111X
Melissa A AlderferCenter for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0002-0508-1693
Sarah E WawrzynskiCenter for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0003-2756-2583
Jennifer ChristoffersonCenter for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0003-3892-9424
Linda G McWhorterDivision of Behavioral Health, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0002-4546-0591
Abigail C DemianczykCardiac Center, Children's Hospital of Philadelphia, Philadelphia, PA, United States.
Anne E KazakCenter for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE, United States.ORCID 0000-0003-0553-0855
Erica SoodSidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, United States.ORCID 0000-0001-8817-4213

Funding

Subproject Title: Clinical Research Education, Mentoring and Career Development CoreU54GM104941 · NIGMS · UNIVERSITY OF DELAWARE · PI Gregory E Hicks · 2013 to 2026
$60.5M
National Institute of General Medical Sciences of the National Institutes of Health U54-GM104941NIGMS NIH HHSNIGMS NIH HHS U54 GM104941NIH HHS U54-GM104941
6 · The paper itself

Abstract

objectiveTo gather parents' perspectives on the experiences of siblings of young children with congenital heart disease (CHD), the impact of CHD on siblings, and the types of resources and supports they need to adjust to CHD within their family.

methodsA community advisory council guided the study. Parents of children with CHD, currently 1-7 years old, who had surgery in their first year of life, were eligible for participation if they were fluent in written English and had internet access. Recruitment through several CHD-specific nonprofit organizations produced a national sample of parents (N = 108). Of the 73 who had non-bereaved heart-healthy children, 59 (81%) provided sibling-relevant data for this study. Most parents were non-Hispanic White (n = 54; 91.5%) mothers (n = 41; 69.5%; Mage = 36.10; SDage = 5.0) reporting on siblings older than the child with CHD (n = 44; 74.6%). Data were qualitative, collected through crowdsourcing, and coded to distill themes.

resultsThree themes emerged: (1) CHD directly affects siblings' psychosocial functioning and daily activities, (2) CHD alters roles and relationships within the family, with impacts to siblings, and (3) families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community, but resources are variable.

conclusionParents described specific ways that CHD impacts their heart-healthy children, including their psychosocial functioning, role in the family, and support from the community. Findings highlight the need for family-centered care in CHD, including screening to identify siblings at risk for psychosocial difficulties and provision of appropriate supports to meet sibling and family needs.

Indexed as

adjustmentcongenital heart diseasefamiliessiblings

Identifiers

PMID41027595
PMCPMC12667196

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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.