Parental perspectives on clinician guidance in value-laden NICU conversations: a qualitative study

Abstract Background Value-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 We 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 Among 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 Parents 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 ISRCTN registry under number ISRCTN16123073, registration date: 17/01/2024, ( https://www.isrctn.com/ISRCTN16123073 ).