Parents' experiences of sharing neonatal information and decisions: consent, cost and risk

Area of Science:

• Neonatal care
• Pediatric neurology
• Medical ethics

Background:

• Neonatal intensive care units (NICUs) manage infants with neurological conditions.
• Increasing medico-legal emphasis on parental involvement in infant care.
• Understanding parental experiences in high-stakes neonatal environments is critical.

Purpose of the Study:

• To explore parents' experiences with information sharing and decision-making in NICUs.
• To identify factors supporting or hindering parental involvement in neonatal care.
• To compare parental expectations with current standards for care and decision-making.

Main Methods:

• Ethnographic research including observations in four southern England NICUs.
• Interviews with parents of 80 infants and 40 senior neonatal staff.
• Qualitative analysis of parental experiences and staff perspectives on decision-making.

Main Results:

• Parents seek active participation and two-way information exchange, valuing collaborative decision-making.
• Discrepancies exist between parental desires for involvement and practitioners' focus on consent processes.
• Parents report feeling like helpless observers, highlighting missed opportunities for engagement.

Conclusions:

• Parental involvement in neonatal care, particularly for infants with neurological problems, requires enhanced communication strategies.
• Bridging the gap between medical perspectives and parental needs is essential for supportive care.
• Implementing 'drawing together' approaches can improve parental satisfaction and engagement in NICU settings.