Sheila addressed the difficulties encountered by spina bifida patients and their caregivers by developing educational materials that can present care guidelines in an easily digestible manner. Problems arise when patients and caregivers receive training primarily during once-a-year visits, where they receive a lot of information from a multi-disciplinary team. Recognizing that they may need more education and support to implement all of their activities of daily living, Sheila conducted interviews to first learn what challenges patients/caregivers faced on a daily basis. She learned that bowel management was an ongoing concern for most, and so Sheila spent time crafting guidance to walk them step-by-step for this important task, ensuring it met the recommendations of the various healthcare providers.

As a result of the program:

• Spain Rehabilitation has a standardized protocol for bowel management for spina bifida patients that can be more readily followed by caregivers