ArticleJournal of child neurology2017
Parent Experience of Neonatal Encephalopathy.
Article in Journal of child neurology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 1 of them a synthesis that pooled it.
What it found
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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
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Parents' experiences of having a child who had a stroke: A systematic review and meta-ethnography.Developmental medicine and child neurology · 2026Pooled it
- Application of the African Philosophy Ubuntu to the Care of Families With Infants Undergoing Therapeutic Hypothermia for the Treatment of Hypoxic-Ischemic Encephalopathy.Nursing philosophy : an international journal for healthcare professionals · 2026Article
- Shifting outlooks after neonatal encephalopathy in the era of therapeutic hypothermia.Pediatric research · 2025Review
- Validation of a machine learning algorithm for identifying infants at risk of hypoxic ischaemic encephalopathy in a large unseen data set.Archives of disease in childhood. Fetal and neonatal edition · 2025Article
- Time Toxicity: Quantifying Healthcare Utilization Attributable to Pediatric Home Ventilation.Pediatric pulmonology · 2025Article
- A Seat at the Table: Family Conferences for Infants with Neurological Conditions.Journal of palliative medicine · 2025Article
- What Influences Maternal Stress in The NICU Among Mothers of Preterm Infants?Journal of multidisciplinary healthcare · 2025Article
- 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
- Seminars in Fetal & neonatal medicine: Palliative and end of life care in the NICU.Seminars in fetal & neonatal medicine · 2023Review
- Neonatal neuropalliative care.Handbook of clinical neurology · 2023Review
- Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.Annals of neurology · 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
- 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
- Ethical considerations in the care of encephalopathic neonates treated with therapeutic hypothermia.Seminars in fetal & neonatal medicine · 2021Article
- Neuropalliative Care for Neonates.Journal of child neurology · 2021Review
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes.
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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.