ArticleAnnals of neurology2022
Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.
Article in Annals of neurology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- Talking About Future Disability: Qualitative Analysis of Family Meetings in Neonatal and Pediatric Intensive Care Units.The Journal of pediatrics · 2026Article
- Well-being in parents of infants with neurological conditions: from birth to 6 months after discharge.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Enhancing shared decision-making for infants in the intensive care unit: lessons from parents.Pediatric research · 2025Article
- Discussion of Spirituality in Family Conferences of Infants With Neurologic Conditions.Journal of pain and symptom management · 2025Article
- A Seat at the Table: Family Conferences for Infants with Neurological Conditions.Journal of palliative medicine · 2025Article
- Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.The Journal of pediatrics · 2023Observational
- Supporting Disclosure of Unmet Mental Health Needs among Parents of Critically Ill Infants.The Journal of pediatrics · 2023Article
- Affirming Perspectives About Quality-of-Life With Caregivers of Children With Severe Neurological Impairment.Pediatric neurology · 2023Article
- Seminars in Fetal & neonatal medicine: Palliative and end of life care in the NICU.Seminars in fetal & neonatal medicine · 2023Review
- The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.Neurology · 2023Article
- Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants.JAMA network open · 2022Article
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9 authors.
Funding
Abstract
objectiveWe characterize the content and role of prognostic discussion for infants with neurologic conditions.
methodsIn this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes.
resultsForty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty.
interpretationIn this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.
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