Development and psychometric validation of the NICU parental agency scale: a multicenter cross-sectional study

Admission to the neonatal intensive care unit (NICU) places families in complex medical environments where parental agency, the perceived capacity to understand treatment, communicate effectively, participate in decisions, and maintain emotional well-being, is crucial for family-centered care. This study aimed to develop and psychometrically validate the NICU Parental Agency Scale (NICU-PAS), a brief instrument measuring this multidimensional construct.

The 15-item NICU-PAS was developed through literature review, expert panel evaluation, and parent focus groups. A multicenter cross-sectional study was conducted across eight NICUs in Suzhou, China, recruiting 350 primary caregivers. Psychometric validation included exploratory and confirmatory factor analysis, internal consistency reliability, and assessment of convergent validity (with parental stress) and discriminant validity (with general health and coping). Subgroup analyses compared first-time and experienced parents.

Confirmatory factor analysis supported the four-domain structure of Treatment Understanding, Communication, Decision Making Participation, and Emotional Well-being (χ²/df = 1.69, CFI = 0.972, RMSEA = 0.045). Internal consistency was good (Cronbach's α = 0.783-0.860 for domains; 0.839 for total scale). Convergent validity was demonstrated by a significant negative correlation with parental stress (r = -0.189, p < 0.001), while discriminant validity was supported by negligible associations with general health and coping (r < 0.05). Experienced parents reported higher agency than first-time parents in Communication (p = 0.013), Emotional Well-being (p = 0.005), and total scores (p = 0.002).

The NICU-PAS demonstrates robust psychometric properties and provides a practical, domain-specific measure of parental agency suitable for research and clinical quality improvement in NICU settings.