Parent understanding and satisfaction with NICU discharge for infants with medical complexity: a scoping review of discharge instruction tools.

backgroundInfants with medical complexity discharged from the neonatal intensive care unit (NICU) often require technology-supported care and frequent follow-up. In this setting, discharge safety depends on parent caregivers' understanding of instructions, confidence performing specialized tasks, and the reliability of post-discharge coordination. Structured discharge instruction approaches and digital tools are increasingly used to standardize education and reinforce learning.

objectiveTo map and synthesize evidence on parent caregiver-perceived understanding and satisfaction with NICU discharge instructions when structured or digital discharge instruction tools are used, with attention to evidence comparing infants with medical complexity with infants without medical complexity at discharge.

methodsA scoping review was conducted across PubMed, Embase, CINAHL, Scopus, and the Cochrane Library. English-language studies addressing NICU discharge instruction processes/tools and parent-reported understanding and/or satisfaction were included. After duplicate removal, 281 records were screened; 63 full texts were assessed, yielding 35 sources (32 peer-reviewed papers and 3 clinical trial registry records). Findings were synthesized thematically.

resultsEvidence consistently framed NICU discharge as a longitudinal transition rather than a single event. Six themes emerged: (1) Caregiver readiness and skill-building; (2) Psychosocial adaptation; (3) Care coordination and continuity across systems; (4) Home care management; (5) Post-discharge surveillance and follow-up engagement; (6) Late preterm safety standards. Interventions and tools (e.g., structured education plans, written materials, family-centered models, telehealth-enabled discharge planning) were generally associated with improved caregiver preparedness and perceived readiness, but benefits varied by family needs and context.

conclusionsStructured and digital discharge tools may improve parent understanding and satisfaction, but they work best as part of a coordinated, needs-based transition. Across studies, readiness extended beyond clinical stability to include caregiver confidence and judgment, reliable handoffs, and plans that fit family capacity. Breakdowns clustered at outpatient transitions when guidance and follow-up were unclear. Priorities include stronger cross-setting coordination, post-discharge safety nets, and future research focusing on standardized measures and implementation-focused designs for NICU discharge planning for medically complex infants.