{
  "abstract": "Background\n\nValue-laden decisions about life-sustaining treatment for critically ill infants in the neonatal intensive care unit (NICU) present profound emotional and ethical challenges for parents and clinicians. In such situations, clinicians must balance providing guidance with respecting parental autonomy. We explored parental perspectives on clinician guidance and effective communication during these decisions.Methods\n\nWe conducted a secondary qualitative analysis within a randomized clinical trial using parental free-text responses to a simulated neonatal decision-making scenario. The study was carried out online between February and April 2024 in Switzerland, Germany, and Austria. Eligible participants were German-speaking parents of preterm infants with prior NICU experience, recruited through patient and parent organizations. Data were analyzed using qualitative content analysis.Results\n\nAmong 128 participants (84% female), parents emphasized the importance of clear, detailed, and evidence-based information about their child's condition and treatment options, as well as empathetic, honest, and individualized communication. They valued sufficient time for discussion and reflection, access to second opinions, and attention to the child's quality of life. Parents appeared to retain a sense of decision ownership, while differing in their preferences regarding clinician guidance. Some welcomed explicit recommendations, whereas others preferred neutral, value-sensitive communication that preserved space for independent deliberation.Conclusions\n\nParents facing complex medical decisions value both high-quality information and empathetic and honest communication. While they generally retain decision ownership, preferences regarding clinician guidance vary, suggesting that clinicians should actively explore how much direction parents want and tailor their communication accordingly.Trial registration\n\nISRCTN registry under number ISRCTN16123073, registration date: 17/01/2024, ( https://www.isrctn.com/ISRCTN16123073 ).",
  "abstract_shown": true,
  "affiliations": [
    "Division of Neonatology, Department of Pediatrics, Inselspital, Bern University Hospital, University of Bern, Friedbühlstrasse 19, Bern, 3010, Switzerland. christine.arnold@insel.ch.",
    "Division of Neonatology, Department of Pediatrics, Inselspital, Bern University Hospital, University of Bern, Friedbühlstrasse 19, Bern, 3010, Switzerland.",
    "Frühchen & Neokinder Schweiz, Swiss non-profit organization of parents of preterm born children, Hinterer Schermen 29, Ittigen, 3063, Switzerland."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 6,
  "authors": [
    {
      "affs": [
        0
      ],
      "name": "Christine Arnold",
      "orcid": "0000-0003-4201-1800"
    },
    {
      "affs": [
        1
      ],
      "name": "Julian Eychmüller"
    },
    {
      "affs": [
        2
      ],
      "name": "Dina Hediger"
    },
    {
      "affs": [
        1
      ],
      "name": "Stephanie Vanessa Schmid"
    },
    {
      "affs": [
        1
      ],
      "name": "Sophie Jaisli"
    },
    {
      "affs": [
        1
      ],
      "name": "André Kidszun"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/69f7anf038tcw.bib",
  "cited_by": 0,
  "doi": "10.1186/s12887-026-07304-5",
  "fulltext_url": "https://europepmc.org/articles/PMC13700193",
  "id": "69f7anf038tcw",
  "issns": [
    "1471-2431"
  ],
  "landing_url": "https://europepmc.org/article/MED/42928158",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "openalex",
      "2735|Ethics and Legal Issues in Pediatric Healthcare"
    ]
  ],
  "openalex": "W7171437939",
  "pdf_url": "https://europepmc.org/articles/PMC13700193?pdf=render",
  "pmcid": "PMC13700193",
  "pmid": "42928158",
  "published": "2026-07-28",
  "publisher": null,
  "ris": "https://research.draconitic.com/paper/69f7anf038tcw.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:21:20Z",
      "native_id": "MED:42928158",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42928158"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "openalex:2735|Ethics and Legal Issues in Pediatric Healthcare",
      "subfield": "reproductive-child"
    }
  ],
  "title": "Parental perspectives on clinician guidance in value-laden NICU conversations: a qualitative study.",
  "title_text": "Parental perspectives on clinician guidance in value-laden NICU conversations: a qualitative study.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:21:20Z",
  "url": "https://research.draconitic.com/paper/69f7anf038tcw",
  "venue": "BMC pediatrics",
  "versions": []
}