ArticlePediatrics2016
Communication Challenges in Neonatal Encephalopathy.
Article in Pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers.
What it found
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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.
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Who cites it
37 citing papers in PubMed.
- Optimistic vs Pessimistic Message Framing in Communicating Prognosis to Parents of Very Preterm Infants: The COPE Randomized Clinical Trial.JAMA network open · 2024Trial
- Feasibility of an Intervention to Support Shared Decision-Making for Critically Ill Infants.The Journal of pediatrics · 2025Article
- Uncertainties in the NICU: a scoping review to inform a tailored taxonomy.Journal of perinatology : official journal of the California Perinatal Association · 2025Article
- Parents' perceptions of the utility of genetic testing in the NICU.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Communication Difficulties Faced by Mothers of Neonates in Selected Neonatal Care Units.Cureus · 2025Article
- A Novel Question Prompt List for Parents of Neonates With Seizures.Pediatric neurology · 2024Article
- Parent Experience of Hypoxic-Ischemic Encephalopathy and Hypothermia: A Call for Trauma Informed Care.American journal of perinatology · 2024Article
- Questions and Controversies in Neonatal Seizures.Children (Basel, Switzerland) · 2023Review
- Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.The Journal of pediatrics · 2023Observational
- Experiences of parents whose school-aged children were treated with therapeutic hypothermia as newborns: A focus group study.Nursing open · 2023Article
- Neonatal neuropalliative care.Handbook of clinical neurology · 2023Review
- Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.American journal of perinatology · 2022Article
- Role of Social Workers in Family Conferences for Critically Ill Infants.Journal of palliative medicine · 2022Observational
- Core outcomes in neonatal encephalopathy: a qualitative study with parents.BMJ paediatrics open · 2022Article
- Assessment of parent understanding in conferences for critically ill neonates.Patient education and counseling · 2022Article
- Decision Making for Infants With Neurologic Conditions.Journal of child neurology · 2022Article
- Fetal-neonatal neurology program development: Continuum of care during the first 1000 days.Journal of perinatology : official journal of the California Perinatal Association · 2022Review
- Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents.Pediatric neurology · 2021Observational
- Neuropalliative Care for Neonates.Journal of child neurology · 2021Review
- Ethical considerations in the care of encephalopathic neonates treated with therapeutic hypothermia.Seminars in fetal & neonatal medicine · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundFamilies must process complex information related to neonatal encephalopathy and therapeutic hypothermia.
methodsIn this mixed methods study, semi-structured interviews were performed with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014.
resultsThematic saturation was achieved after 20 interviews. Parental experience of communicating with clinicians was characterized by 3 principle themes. Theme 1 highlighted that a fragmented communication process mirrored the chaotic maternal and neonatal course. Parents often received key information about neonatal encephalopathy and therapeutic hypothermia from maternal clinicians. Infant medical information was often given to 1 family member (60%), who felt burdened by the responsibility to relay that information to others. Families universally valued the role of the bedside nurse, who was perceived as the primary source of communication for most (75%) families. Theme 2 encompassed the challenges of discussing the complex therapy of therapeutic hypothermia: families appreciated clinicians who used lay language and provided written material, and they often felt overwhelmed by technical information that made it hard to understand the "big picture" of their infant's medical course. Theme 3 involved the uncertain prognosis after neonatal encephalopathy. Parents appreciated specific expectations about their infant's long-term development, and experienced long-term distress about prognostic uncertainty.
conclusionsCommunicating complex and large volumes of information in the midst of perinatal crisis presents inherent challenges for both clinicians and families. We identified an actionable set of communication challenges that can be addressed with targeted interventions.
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Registered trials
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