Family Perspectives on Unmet Needs and Shared Decision-Making in NICU Setting

Area of Science:

• Neonatal Intensive Care Unit (NICU) Care
• Healthcare Quality Improvement
• Patient-Centered Care

Background:

• Public-sector neonatal intensive care units (NICUs) are critical for infant care but caregiver experiences require further investigation.
• Understanding caregiver perspectives is essential for improving the quality of care in resource-limited settings.

Purpose of the Study:

• To describe the caregiver experience of care in public-sector neonatal intensive care units (NICUs).
• To identify gaps in communication, participation, and support within the NICU setting.

Main Methods:

• A mixed-methods approach was used in a level III NICU in North India.
• Data collection included structured questionnaires and qualitative interviews with caregivers and key informants.

Main Results:

• Caregivers reported high trust in clinical teams and valued staff commitment and competence.
• Identified gaps include incomplete communication, limited parental involvement in decisions, and significant structural burdens impacting caregiver experience.
• While emotional support was present, care remained largely provider-led.

Conclusions:

• Public-sector NICUs can foster trust and emotional support, but systemic improvements are needed.
• Addressing communication deficits and enhancing parental participation are crucial for patient-centered care.
• Mitigating structural burdens is essential for a holistic positive caregiver experience.