Evidence map›Paper›PMID 40551782›Full record

ReviewFrontiers in pediatrics2025

Caregiver-informed meta-synthesis of caregivers' experiences with tracheostomy decision-making in pediatrics.

Daniel Ofosu, Sela Scott, Elise Kammerer, Larissa Lecona, Kristen Gibson, Stephanie Nitschke, Pam Thompson-Kai, Dacia Chiarieri-Hirsch, Nadia Qureshi, Lesley Soril and 2 more

Abstract readReview
In one paragraph

Review in Frontiers in pediatrics, 2025. 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

12 authors.

Daniel OfosuDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Sela ScottDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Elise KammererDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Larissa LeconaParent Partner, Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Kristen GibsonParent Partner, Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Stephanie NitschkeParent Partner, Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Pam Thompson-KaiParent Partner, Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Dacia Chiarieri-HirschMedicine Strategic Clinical Network, Alberta Health Services, Edmonton, AB, Canada.
Nadia QureshiMedicine Strategic Clinical Network, Alberta Health Services, Edmonton, AB, Canada.
Lesley SorilMedicine Strategic Clinical Network, Alberta Health Services, Edmonton, AB, Canada.
Michael van ManenDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Maria Castro-CodesalDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Family-caregivers facing the decision of a tracheostomy for their child must consider many factors beyond the medical procedure itself, such as quality of life, personal values, and overall care goals. Objective: This study aimed to synthesize the available qualitative literature exploring family-caregivers' experiences regarding decision-making about tracheostomy for children. Methods: We conducted a systematic review and meta-synthesis of qualitative studies exploring family-caregivers' experiences with tracheostomy decision-making for their children. Four parents with lived experience of having to make decisions about tracheostomy for their child were co-investigators for this work. An experienced librarian developed search strategies to systematically search databases for eligible studies. Two researchers independently screened, extracted and conducted thematic analyses of all the included studies. Researchers and parent partners discussed the identified themes, conceptualized them into categories and crafted a coherent narrative that was larger than the individual contributions of each study. Results: Seventeen studies were included in the meta-synthesis. Our analysis generated seven themes: (1) the initial reaction; (2) what's going to happen to my child; (3) a place for hope; (4) taking on a new role; (5) how are we going to pay the bills; (6) navigating changing relationships; and (7) a new normal: adjusting to life at home. The identified themes indicated that family-caregivers often consider not only the immediate need to extend their child's life during decision-making but also the long-lasting implications for their child's future, their own roles as caregivers, and the impact on their family as a whole. Conclusion: The qualitative literature provides valuable insights into the multifaceted challenges faced by family-caregivers during decision-making and the critical role of healthcare professionals in supporting families through this journey beyond the initial decision.

Indexed as

decision-makingfamily-caregiversparent engagementpediatricsqualitative meta-synthesistracheostomy

Identifiers

PMID40551782
PMCPMC12183042

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.