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

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

This study was conducted from May to August 2024 in the level III NICU of a tertiary public hospital in North India. Twenty caregivers completed a structured experience-of-care questionnaire aligned with World Health Organization quality-of-care domains. Qualitative data was generated through individual semi-structured interviews with 20 caregivers, six key informant interviews, and two focus group discussions involving nine caregivers.

Caregivers consistently described high trust in the clinical team and valued the commitment, kindness, and technical competence of staff. Descriptive questionnaire findings also suggested a generally positive perception of respect and emotional sensitivity. However, qualitative analysis identified important gaps. First, communication was reassuring but often incomplete: many caregivers did not know staff roles, had limited understanding of devices and procedures, and received little written information. Second, parents were more involved in routine caregiving tasks than in treatment discussions and decisions. Third, caregiver experience was strongly shaped by structural burdens outside direct bedside care, including postoperative maternal immobility, ward crowding, restrictions on attendants in postnatal/step-down areas, uncertainty about bed availability, and indirect financial strain.

In this public-sector NICU, families described a care environment that was trusted and emotionally supportive but remained largely provider-led.