Bridging the epistemic gap: a psychological acceptance model for the cross-cultural health communication of traditional Chinese medicine.

Admission of an infant to the neonatal intensive care unit (NICU) places families in a situation marked by medical complexity, uncertainty, and rapid decision-making. Caregivers are expected to absorb unfamiliar clinical information, communicate with multiple members of the care team, and make value-sensitive choices under time pressure, often while experiencing marked emotional distress. In this context, family engagement is not only a psychosocial concern but also a practical component of care delivery, shaping how effectively information is exchanged, how decisions are understood, and how caregivers participate in ongoing treatment planning (–). Within NICU care, the concept of parental agency captures a caregiver's perceived capacity to act effectively in relation to their infant's hospitalization. Parental agency in the NICU can be understood as the extent to which caregivers feel able to comprehend treatment information, communicate with clinicians, participate in decisions, and maintain emotional functioning sufficient to stay engaged (–). This construct is closely aligned with the goals of family-centered care because it reflects not only what clinicians provide but also what caregivers feel capable of doing in response (, , ). Importantly, agency is conceptually distinct from related outcomes such as stress, anxiety, depression, satisfaction with care, or general coping style (–). A caregiver may report high stress while still feeling able to ask questions, understand the care plan, and participate in decisions. Conversely, low perceived agency may persist even when global satisfaction is acceptable, particularly when information is difficult to interpret or communication is constrained (, , ). A range of instruments has been used to assess caregiver experiences in pediatric and neonatal settings, including measures of parental stress, psychological symptoms, satisfaction, and broad empowerment (–). However, many commonly used NICU-focused tools emphasize stressors and emotional burden rather than the caregiver's perceived ability to engage in day-to-day care processes (, ). Instruments developed for empowerment or activation in other populations often do not directly map onto the operational tasks that families face during NICU hospitalization, such as understanding complex treatment plans, navigating clinical communication, and participating in decisions (, ). As a result, existing measurement approaches may not adequately capture the actionable aspects of caregiver experience that could inform quality improvement and targeted interventions within NICU services.