Bridging the Gap: The Need for a Nurse-Led Transition-of-Care Education Program to Improve Outcomes for Pediatric Patients on Home Parenteral Nutrition (HPN)

Home parenteral nutrition (HPN) is a life-sustaining therapy used for children with motility disorders, intestinal failure, and other severe and debilitating gastrointestinal conditions. In recent years, advances in multidisciplinary care have significantly improved survival; however, the transition from hospital-based initiation of HPN to independent home management remains exceptionally challenging for families (Hwang et al., 2025). Parents must suddenly assume responsibility for central line management, sterile technique, infusion procedures, and early recognition of life-threatening complications. This steep learning curve often occurs under conditions of intense emotional stress, leaving caregivers to grapple with fear, responsibility, and uncertainty as they become their child’s lifeline. Literature consistently shows that this transition is marked by caregiver distress, high rates of clinical complications, and inconsistent educational practices across healthcare systems (Chen et al., 2023; Davis et al., 2026). Although nurses are central to inpatient HPN education, there is currently no standardized, evidence-based transition-of-care model guiding how nurses prepare families for home management. This gap contributes to emotional burden and preventable complications, underscoring the need for a structured, nurse-led transition-of-care approach tailored to pediatric HPN. Emotional Burden and the Preparedness of Caregivers The emotional burden experienced by caregivers of children on HPN is substantial and requires significant logistical and psychological preparation. Across multiple studies, caregivers describe the transition to home HPN as emotionally taxing, frightening, and overwhelming. Parents are expected to quickly master sterile central line care and infusion pump operation while coping with the reality that even minor errors may result in life-threatening complications. In a scoping review by Davis et al. (2026), caregivers reported high levels of anxiety, stress, and depressive symptoms related to the constant vigilance required to manage HPN safely at home. These emotional challenges were not transient; caregivers described persistent fear of infection, pump malfunction, or line complications, particularly during the early weeks following discharge (Hwang et al., 2025). Caregiver preparedness plays a critical role in patient safety. Chen et al. (2023) found that families often perceived HPN education as rushed, fragmented, and overly technical, leading to low confidence in their ability to independently manage care. Insufficient preparedness has direct implications for outcomes, as caregiver competence and confidence are closely associated with reduced complications and improved long-term success (Hwang et al., 2025). For families of medically complex children, these challenges are compounded by frequent hospitalizations, disrupted family routines, and multiple concurrent therapies. Research synthesis demonstrates that role strain, sleep disruption, and emotional exhaustion are common among caregivers managing HPN at home (Davis et al., 2026). This cumulative burden highlights the need for emotionally attuned, comprehensive nursing support throughout the transition process. Clinical Challenges and Risks in the Transition to Home HPN In addition to emotional strain, the transition to home HPN carries significant clinical risks. Central line–associated bloodstream infections remain among the most serious and common complications in pediatric HPN populations (Demirok et al., 2025). Cohort studies consistently report high infection rates, particularly within the first few months postdischarge—when caregiver confidence is lowest (Demirok et al., 2025; Hwang et al., 2025). These findings reinforce the importance of meticulous central line education before discharge. Longitudinal studies further demonstrate variation in outcomes based on the quality and consistency of education families receive. Lezo et al. (2022) showed that centers using standardized protocols and multidisciplinary teams experienced lower infection rates and improved survival compared with those lacking structured educational programs. Over nearly 3 decades, improved outcomes were strongly correlated with structured caregiver education supported by consistent nursing practices (Wiskin et al., 2021). Despite the clear relationship between education and outcomes, evidence reveals persistent inconsistency in HPN teaching. Variability exists in content, depth, competency assessment, and discharge readiness evaluation (Chen et al., 2023; Davis et al., 2026). These inconsistencies reflect the absence of a unified transition-of-care framework to guide nursing practice across institutions. Gaps in Current Transition-of-Care Protocols Current literature identifies several gaps in preparing families for home HPN. Few studies describe standardized educational frameworks that include simulation, structured return demonstration, or competency-based approaches. Instead, education is frequently dependent on individual nurse experience, unit norms, or time constraints, resulting in inequities in caregiver preparedness (Chen et al., 2023; Davis et al., 2026). Families also report limited coordination between inpatient teams, community nursing resources, and home infusion providers (Létourneau et al., 2024). Fragmented communication often leads to confusion regarding supplies, instructions, and points of contact after discharge, increasing caregiver stress and the likelihood of preventable complications or emergency visits (Hwang et al., 2025; Wiskin et al., 2021). Another critical gap is the lack of clearly defined competencies and training pathways for nurses delivering HPN education. Without standardized preparation, educational quality depends largely on individual familiarity rather than structured professional development (Pironi et al., 2023). Although structured education programs for adolescents on long-term HPN have demonstrated improvements in autonomy and confidence, no comparable programs exist for families initiating HPN for the first time (D’Arienzo et al, 2024; Goulet et al., 2024). The Case for a Nurse-led Transition-of-Care Program Gastroenterology nurses are uniquely positioned to lead structured transition-of-care initiatives due to their central role in patient education, clinical assessment, and family support. Evidence consistently indicates that comprehensive education, emotional encouragement, and coordinated discharge planning are associated with improved outcomes for children on HPN (Davis et al., 2026; Lezo et al., 2022). A nurse-led transition-of-care program could provide a standardized curriculum grounded in evidence-based practices outlined by the European Society for Clinical Nutrition and Metabolism (ESPEN) guidelines (Pironi et al., 2023). Core components should include sterile technique, central line maintenance, emergency management, and infusion pump competency. Beyond technical skills, nurses can address caregiver anxiety by fostering a supportive learning environment and reinforcing confidence through repetition and ongoing engagement. Early and continued postdischarge follow-up—through telehealth, phone calls, or scheduled check-ins—can further bridge the gap between hospital readiness and home application. Continued nursing support has been shown to reduce complications, alleviate caregiver anxiety, and strengthen partnerships between families and health care teams (Davis et al., 2026; Goulet et al., 2024). Successful implementation of a nurse-led transition-of-care program requires institutional support, interdisciplinary collaboration, and protected time for education. Nurses must be given adequate resources to deliver hands-on teaching, assess caregiver competency, and provide follow-up support after discharge. Embedding such programs into standard discharge workflows ensures sustainability and prevents reliance on individual nurse experience alone. When supported at the system level, nurse-led transition programs have the potential to standardize care, reduce preventable complications, and improve equity in caregiver preparedness across institutions. Implications for Gastroenterology Nursing Practice This evidence supports a clear opportunity for gastroenterology nurses to advance patient safety and caregiver well-being through the development of structured, nurse-led transition-of-care programs for pediatric HPN. Nurses can champion competency-based education, integrate psychosocial assessment into discharge planning, and advocate for coordinated communication across care settings. ESPEN competencies emphasize the need for standardized training and interdisciplinary coordination to support safe implementation of HPN (Bischoff et al., 2020). Aligning nursing practice with these competencies reinforces the importance of a nurse-led transition-of-care framework. Such programs align with professional nursing values by prioritizing patient safety, promoting family-centered care, and ensuring continuity across settings (Pironi et al., 2023). In addition to improving patient safety, nurse-led transition-of-care programs support the professional development and role clarity of gastroenterology nurses. By establishing standardized competencies, educational expectations, and discharge processes, nurses are better equipped to deliver consistent, high-quality education to families. This structure not only enhances caregiver preparedness but also supports nurses in their transition from bedside clinicians to advanced educators and care coordinators. Clearly defined expectations reduce variability in practice and empower nurses to practice at the top of their scope while maintaining accountability for patient outcomes. Conclusion Children who are discharged home on HPN, as well as their families, are faced with significant educational, emotional, and clinical challenges during the transition from hospital to home. The literature overwhelmingly demonstrates there is inconsistent educational practice, high caregiver burden, and preventable complications that point to the need for a more structured approach to this transition of care. The absence of a standardized nurse-led program represents a significant gap in pediatric HPN care, but also one that can be effectively addressed through evidence-based nursing leadership. A nurse-led transition-of-care model has the significant potential to reduce complications, enhance caregiver preparedness and confidence, and improve the well-being of families and patients who are navigating the intense complexities of HPN. This literature review provides a critical foundation for the aforementioned program design and supports the development of this intervention as a crucial next step for practice, research, and advancement of pediatric gastroenterology nursing.