MANUSCRIPT CITATION
Eychmüller J, Kidszun A, Hediger D, Jaisli S, Schmid SV, Arnold C. Clinician Opinion Disclosure and Parental Decision-Making in the Neonatal Intensive Care Unit: A Randomized Clinical Trial. JAMA Pediatr. 2026; 180(1): 98-99. PMID 41143839
REVIEWED BY
Dr Barah Hassan, Neonatal Higher Speciality Trainee, Royal Victoria Infirmary, Newcastle-upon-Tyne Hospitals, UK, barah.hassan1@nhs.net
Professor Prakash Kannan Loganathan, Consultant Neonatologist, James Cook University Hospital, South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK pkannanloganathan@nhs.net
TYPE OF INVESTIGATION
Simulated, online randomised control trial
QUESTION
In parents of children born preterm with prior neonatal intensive care (NICU) experience (P), does the disclosure of a clinician’s personal opinion (I), compared to withholding that opinion (C), affect parental preparation for decision-making (O) during a simulated consultation regarding tracheostomy in an extremely preterm infant (T)?
METHODS
• Design: Online randomised clinical trial involving participants from three countries.
• Allocation: Participants were randomised to view one of two consultation videos.
• Blinding: Not explicitly stated. The primary outcomes were measured before the participants viewed the alternative video to the arm they were enrolled into.
• Follow-up period: No longitudinal follow-up; outcomes were measured immediately after viewing the assigned video.
• Setting: Online simulation involving participants from Austria, Germany, and Switzerland.
• Patients: 218 German-speaking parents of preterm infants with prior NICU experience.
• Intervention/Exposure: In one video, the clinician responds with a personal opinion (“disclosed a personal opinion against tracheostomy”) after the parent asks, “What would you do if this were your child?”, compared to a control video where the clinician withholds their opinion.
• Outcomes:
o Primary outcome: Measured using a “Preparation for Decision-Making Scale, German version” (PDMS-SG).
o Secondary outcomes: Clinician compassion ratings, hypothetical treatment decisions, and the parental preference for disclosure.
• Analysis and Sample Size: 1198 individuals clicked on the trial website, with 873 randomised after exclusion. The sample size included only 218 parents. Group comparisons used t tests and χ² tests, with regression analyses adjusting for variables including age, gender, university degree, depressive symptoms, clinician compassion ratings, and gestational age.
MAIN RESULTS
• Baseline parent and infant characteristics were provided in Table 1.
• There was no statistically significant difference between groups in the primary outcome, parental preparation for decision-making measured by PDM-SG (Table 2).
• There were also no significant differences in secondary outcomes, including clinician compassion ratings, hypothetical treatment decision, or preference for clinician opinion disclosure (Table 2).
• After viewing both videos, parental preferences varied: 52.8% preferred the disclosure version, meaning nearly half preferred the non-disclosure approach.
• Depressive symptoms were negatively associated with preparation for decision-making, suggesting that parents with more depressive symptoms may feel less prepared when facing complex neonatal decisions.
• There was substantial post-randomisation attrition: 873 participants were randomised, but only 218 were included in the primary analysis.
| Table 1: Participant Baseline Characteristics | ||
| Characteristic | Disclosure group, n=106 | Control group, n=112 |
| Female parent | 94/106, 88.7% | 98/112, 87.5% |
| Parent age, years, mean ± SD | 36.4 ± 5.9 | 35.9 ± 5.0 |
| Infant age at interview in 2024, years, mean ± SD | 4.9 ± 5.6 | 3.9 ± 3.6 |
| Infant gestational age, weeks, mean ± SD | 30.0 ± 3.8 | 29.7 ± 4.0 |
| No respiratory support at discharge | 89/104, 85.6% | 98/109, 89.9% |
| Tracheostomy tube at discharge | 3/104, 2.9% | 2/109, 1.8% |
| Table 2: Primary and secondary Outcomes | |||
| Primary Outcome | Disclosure group, n=106 | Control group, n=112 | Effect / P value |
| PDM-SG score, mean ± SD | 64.84 ± 18.9 | 65.87 ± 19.0 | Mean difference −1.04; 95% CI −6.10 to 4.03 |
| Secondary Outcome | Disclosure group | Control group | Effect / P value |
| Clinician compassion rating | Similar between groups | Mean difference −1.62; 95% CI −4.00 to 0.77 | |
| Hypothetical decision concordant with clinician opinion against tracheostomy | 50.5% | 49.5% | 0.34 |
| Preferred disclosure version after viewing both videos | Overall, 76 participants, 52.8% | — | Those preferring disclosure rated it as more helpful |
| Helpfulness rating among those preferring disclosure | — | — | Mean difference 2.15; 95% CI 1.39 to 2.90 |
| Depressive symptoms and PDM-SG score | Negative association | — | β −2.59; 95% CI −4.55 to −0.62 |
CONCLUSION
In parents of children born preterm with prior NICU experience, disclosure of a clinician’s personal opinion during a simulated neonatal tracheostomy consultation did not improve parental preparation for decision-making compared with withholding that opinion. Parental preferences were divided, with only a modest overall preference for opinion disclosure, while baseline depressive symptoms were negatively associated with decision-making preparedness.
COMMENTARY
This randomised trial addresses a common but challenging question in neonatology: “What would you do if this were your child?” Many communication frameworks caution against uninvited disclosure of personal opinions because of the risk of paternalism and undue influence (1-3). Instead, contemporary neonatal communication emphasises shared decision-making, where clinicians provide expertise and guidance while supporting parental values and involvement in decisions, particularly when outcomes are uncertain (4, 5). This study therefore explores whether disclosure of a clinician’s personal opinion affects parental preparation for decision-making in a simulated neonatal tracheostomy consultation.
The study’s strengths include its randomised design, clinically relevant question, standardised video scenarios, and structured statistical analysis. However, the findings require cautious interpretation. Parents with previous NICU experience are an appropriate study population, but their prior conversations and infant outcomes may have shaped their responses. Tracheostomy is also a relatively uncommon outcome of extreme prematurity (6), and only fiveinfants in this cohort were discharged with a tracheostomy. Therefore, most participants were unlikely to have direct experience of this specific decision, limiting applicability to families facing real tracheostomy counselling. Although 52.8% preferred the disclosure version, nearly half preferred withholding the clinician’s personal opinion, reinforcing that there is unlikely to be a single correct communication style. Further limitations include the hypothetical nature of the intervention, use of animated videos, and testing only one direction of clinician opinion — an opinion against tracheostomy — without evaluating a clinician opinion supporting tracheostomy. Attrition was high, raising selection bias. The cohort was predominantly female and largely consisted of parents of infants born around 30 weeks’ gestation, most of whom had limited respiratory support needs at discharge. This makes them poorly representative of parents facing decisions after prolonged ventilation or severe chronic lung disease. The time elapsed since neonatal admission also introduces recall bias and response shift.
Depressive symptoms were negatively associated with decision-making preparation, highlighting the importance of parental emotional state during complex counselling. Generalisability is further limited by inclusion of only German-speaking parents from three European countries, as cultural beliefs, attitudes to clinician authority, disability, and life-sustaining treatment may influence responses. The simulation also cannot capture the effect of trust, continuity, and the duration of the clinician–family relationship. Clinician opinion disclosure should not be viewed as a binary choice, but as part of a structured, values-sensitive conversation.
Overall, this study suggests that structured clinician opinion disclosure may not undermine parental preparation for decision-making in a simulated setting. However, the findings should not be over-interpreted as evidence that personal opinion disclosure is neutral or universally appropriate. Rather, they support individualised shared decision-making, where clinicians provide guidance within a values-sensitive conversation while preserving parents’ role as equal partners (4, 7).
REFERENCES
1. Blumenthal-Barby JS, Loftis L, Cummings CL. Should neonatologists give opinions withdrawing life-sustaining treatment? Pediatrics 2016; 138:e20162585.
2. Tucker Edmonds B, McKenzie F, Panoch JE, Wocial LD, Barnato AE, Frankel RM. Doctor, what would you do?: Physicians’ responses to patient inquiries about periviable delivery. Patient Education and Counseling 2015; 98:49-54.
3. Tucker Edmonds B, Torke AM, Helft P, Wocial LD. Doctor, what would you do? An answer for patients requesting advice about value-laden decisions. Pediatrics 2015; 136:740-5.
4. Waddington C, van Veenendaal NR, O’Brien K, Patel N. Family integrated care: Supporting parents as primary caregivers in the neonatal intensive care unit. Pediatric Investigation 2021; 5:148-54.
5. Weiss EM, Barg FK, Cook N, Black E, Joffe S. Parental decision-making preferences in neonatal intensive care. Journal of Pediatrics 2016; 179:36-41.
6. Wang CS, Kou YF, Shah GB, Mitchell RB, Johnson RF. Tracheostomy in extremely preterm neonates in the United States: a cross-sectional analysis. Laryngoscope 2020; 130:2056-62.
7. Lantos JD. Ethical problems in decision making in the neonatal ICU. New England Journal of Medicine 2018; 379:1851-60.
FUNDING
None
CONFLICTS OF INTEREST
None
