Patient and family education is a critical component of successfully managing the complex pediatric patient. The literature reveals that a comprehensive patient/parent education program, beginning upon admission, enhances staff engagement and can transform care at the bedside. Further, providing early access to multi-modal education and emotional support decreases the anxiety of parents at the time of discharge when they find themselves thrust into the new role of medical caregiver. Despite the tremendous need for research and best-practice models in this area, there is a gap in the literature describing comprehensive education programs implemented prior to discharge for medically fragile children living with complex disorders.
Due to a number of converging factors (including discharge delays, patient/family satisfaction, standard of care, best practices, and transformative bedside care) our pediatric acute rehab facility began to identify the need for a formal education program. To better identify specific and quantifiable needs, an ad hoc multi-disciplinary committee (nursing, child life, respiratory therapy, social work), with the support of nursing leadership, implemented a qualitative and quantitative assessment of education and support. We surveyed all staff nurses, nursing assistants, parents, and other allied disciplines (child life and respiratory therapy) to determine perceived education and support needs, learning preferences, teaching styles, and other related factors. Review of existing educational materials was also part of the assessment. Results across all stakeholders overwhelmingly favored early access to multi-disciplinary, multi-modal education for patients and parents. As expected, learning and teaching styles varied considerably. Further, review of existing educational materials revealed an area in significant need of revamping and consideration. Findings were presented to nursing management and other members of the leadership team and the committee was given permission to create a pilot program.
The objective of the pilot education and support program (beginning Q2 2017) is to focus on the most common topics of education including NG placement, medication administration and trach/vent care on the inpatient infant and toddler unit. The goals of the pilot program are to 1) decrease length of stay, 2) improve patient/family satisfaction and other measurable outcomes and 3) create a standardized process for parent/patient education that can be applied to other education needs. Upon completion of the 6 month pilot, the program parameters will be expanded to include other educational topics needed for self-management at discharge (including wound care and self-catheterization) and broadened to address the school-age/adolescent population.