ArticleThe Journal of pediatrics2018
Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity.
Article in The Journal of pediatrics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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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.
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.
Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 65 citations in OpenAlex.
- Shared decision-making experiences in child long-term ventilation: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2023Pooled it
- Using Narratives to Correct Forecasting Errors in Pediatric Tracheostomy Decision Making.Medical decision making : an international journal of the Society for Medical Decision Making · 2021Trial
- Shared Decision-Making for Children with Medical Complexity and Their Caregivers in the Perioperative Time.Pediatric clinics of North America · 2026Review
- Development and acceptability testing of a tracheostomy decision support video for parents.PEC innovation · 2025Article
- Parental Values During Tracheostomy Decision-Making for Their Critically Ill Child: Interviews of Parents Who Just Made the Decision.Children (Basel, Switzerland) · 2025Article
- Navigating a New Normal: A Mixed-Methods Study of the Pediatric Tracheostomy Parent-Caregiver Experience.Children (Basel, Switzerland) · 2025Review
- Caregiver-informed meta-synthesis of caregivers' experiences with tracheostomy decision-making in pediatrics.Frontiers in pediatrics · 2025Review
- Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity.The Journal of pediatrics · 2025Article
- Candidacy Decisions for Long-term Ventilation.Pediatrics · 2024Article
- Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?Palliative & supportive care · 2024Article
- Evaluating caregiver-clinician communication for tracheostomy placement in the neonatal intensive care unit: a qualitative inquiry.Journal of perinatology : official journal of the California Perinatal Association · 2024Article
- Parents' experiences of their children's medical journeys with tracheostomies: A Focus Group Study.Paediatrics & child health · 2024Article
- Risk of death at home or on hospital readmission after discharge with pediatric tracheostomy.Journal of perinatology : official journal of the California Perinatal Association · 2023Article
- Providing care for children with tracheostomies: a qualitative interview study with parents and health professionals.BMJ open · 2023Article
- Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.Pediatric pulmonology · 2022Article
- Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy.BMC medical informatics and decision making · 2022Article
- Development and validation of a novel informational booklet for pediatric long-term ventilation decision support.Pediatric pulmonology · 2021Article
- Parental Conflict, Regret, and Short-term Impact on Quality of Life in Tracheostomy Decision-Making.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2020Article
- Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.Annals of the American Thoracic Society · 2020Article
- Incidence and Long-Term Outcomes of Pediatric Tracheostomy in Japan: A Cohort Study Using a Japanese Claims Database.Pediatrics international : official journal of the Japan Pediatric SocietyArticle
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
objectiveTo describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY
designIn this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision.
resultsWe found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC.
conclusionsDecisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.
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Registered trials
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.