Date of Award

Winter 2025

Project Type

Clinical Doctorate

Department

Nursing

Program or Major

Doctor of Nursing Practice

Degree Name

Other

First Advisor

Cathleen Colleran, DNP, RN, CNE

Abstract

Background: Spina Bifida is the most common central nervous system disorder in the United States (CDC, 2024). Even with early surgical repair, patients may have chronic, disabling, multisystem needs (Phillips et al., 2017). Adequate care of Spina Bifida requires a multidisciplinary approach. As such, patients with spina bifida require multiple specialty providers, clinic appointments, care-tasks, and interventions (CDC, 2024, Phillips, et al., 2017). Synthesizing information from multiple care providers can be daunting, especially for adolescents as they grow more autonomous in their care, and especially as they enter the age of pediatric-to-adult transition (Psihogios et al., 2015).

Purpose: Literature suggests that care plans for chronic conditions may enhance disease knowledge, care practices, and confidence. The purpose of this quality improvement project was to understand how standardized self-care education can enhance confidence in care, before participants set specific pediatric-to-adult transition goals. The aim was to implement a comprehensive self-care management plan for adolescents with Spina Bifida.

Methods: Adolescents 11-16 years of age created care plans encompassing care-related interventions related to their spina bifida. Pre and Post-surveys were compared to establish outcome-intervention causality related to each project aim (Moran, Burson, et al., 2024). Results were analyzed using descriptive statistics.

Results/Interpretation: Results show a trend toward improvements in all domains including confidence in care, condition understanding, and an improved ability to report problems to the care team. Participants found the intervention useful for keeping track of needs and better understanding the impact of spina bifida on overall health. Post-intervention, participants appreciated an increased awareness of their diagnosis, were grateful for one-on-one engagement, and expressed increased confidence in self-care.

Conclusion & Implications: Care plans for adolescents with Spina Bifida can be beneficial organizational and educational tools to improve self-care confidence while acting as a foundation for meaningful health-related knowledge and eventual independent care delivery.

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