Evidence map›Paper›PMID 38729894›Full record

ArticleJournal of pediatric nursing

"I can't provide what my child needs": Early feeding experiences of caregivers of children with craniofacial microsomia.

Bruna Costa, Nicola M Stock, Alexis L Johns, Christy M McKinney, Amelia F Drake, Amy Schefer, Carrie L Heike

Abstract read
In one paragraph

Article in Journal of pediatric nursing. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Article
  2. "It's just us": Families' experiences with temporary tube feeding.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026
    Article
  3. More than meets the eye: The hidden burden of temporary feeding tubes on children and their families.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026
    Article
  4. Article
  5. 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.

Bruna CostaCenter for Appearance Research, University of the West of England, UK.
Nicola M StockCenter for Appearance Research, University of the West of England, UK.
Alexis L JohnsDivison of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles and Keck School of Medicine, University of Southern California, USA.
Christy M McKinneySeattle Children's Research Institute, Seattle, WA, USA.
Amelia F DrakeUniversity of North Carolina, School of Medicine, Chapel Hill, NC, USA.
Amy ScheferSeattle Children's Research Institute, Seattle, WA, USA.
Carrie L HeikeSeattle Children's Research Institute, Seattle, WA, USA. Electronic address: carrie.heike@seattlechildrens.org.

Funding

Transform Dissemination and Implementation Science in CTSA ProgramsUL1TR002319 · NCATS · UNIVERSITY OF WASHINGTON · PI John K. Amory · 2017 to 2026
$100.0M
NCCIH Supplement to NCATS/CTSA Program for KL2 Scholars - M. SoddersKL2TR002317 · NCATS · UNIVERSITY OF WASHINGTON · PI Christy Michelle McKinney · 2017 to 2026
$14.5M
NRSA Training CoreTL1TR002318 · NCATS · UNIVERSITY OF WASHINGTON · PI Megan Moore · 2017 to 2026
$8.4M
Craniofacial microsomia: Accelerating Research and Education (CARE)R01DE029510 · NIDCR · SEATTLE CHILDREN'S HOSPITAL · PI HEIKE, CARRIE LYN, STOCK, NICOLA · 2020 to 2024
$3.2M
NCATS NIH HHS KL2 TR002317NCATS NIH HHS TL1 TR002318NCATS NIH HHS UL1 TR002319NIDCR NIH HHS R01 DE029510
6 · The paper itself

Abstract

purposeCraniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program, this study described caregivers' early feeding experiences. DESIGN AND MATERIALS: US-based caregivers of 34 children with CFM participated in remote narrative interviews. Two authors completed inductive thematic analysis in an iterative process until consensus was reached.

resultsCaregivers' narratives outlined the inherent challenges of feeding an infant with special healthcare needs. The first theme 'Navigating Challenges and Managing Expectations' describes the distress participants experienced when they were unable to breastfeed and the negative emotional effect of switching to formula. The second theme 'Making Adaptations' outlines the methods participants tried, including breast pumps and feeding tubes. The third theme 'Accessing Support' describes participants' interactions with healthcare providers and challenges accessing feeding support. The final theme 'Growing from Adversity' recounts participants' relief once their child established a feeding pattern and the personal growth gained from their experiences.

conclusionsCaregivers reported several feeding related challenges associated with CFM, many of which negatively affected their wellbeing. Negative consequences were particularly pronounced in cases where caregivers' feeding experiences differed from their expectations. Participants identified challenges in accessing reliable feeding information and support. Despite difficult experiences, caregivers cited some positive outcomes, including increased confidence and resilience. PRACTICE IMPLICATIONS: Holistic feeding information and support for families affected by CFM should be inclusive of several feeding methods to improve care delivery, child health, and the caregiver experience.

Indexed as

CaregiversAdaptation, PsychologicalAdultBreast FeedingChild, PreschoolFemaleGoldenhar SyndromeHumansInfantInfant, NewbornMaleQualitative ResearchUnited StatesBreastfeedingCraniofacial microsomiaFeedingRare condition

Identifiers

PMID38729894
PMCPMC11227386

What OpenQuestion holds

Textmetadata
LicenceTDM
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.