Building Self-Management Skills for Adults with Spina Bifida: FISA Foundation Grant Awarded to UPMC Adult Spina Bifida Clinic Team
December 16, 2025
Due to advances in health care and rehabilitation, adults with spina bifida are living longer than ever before. This increase in longevity has been accompanied by new challenges related to navigating complex health care systems and engaging consistently in health care self-management. Many continue to experience preventable secondary conditions, including urinary tract infections and pressure ulcers, that can significantly impact health and quality of life. These issues can sometimes be linked to a lack of available care, but also to barriers in managing complex health needs across multiple providers, and systems that is a fundamental aspect of existence for adults living with spina bifida.
Recognizing this gap, a cross-disciplinary team from the UPMC Adult Spina Bifida Clinic and UPMC Department of Physical Medicine and Rehabilitation was awarded a grant from the FISA Foundation to develop and test a Health Care Navigator Program for adults living with spina bifida.
The program is designed to teach and mentor adults with spina bifida the skills needed to effectively manage their health care, advocate for themselves, and prevent avoidable complications.
Leading the project are principal investigator Ted Allaire Barrios, PhD, and study co-designer, Monica Albert Still, BSN, RN, in close collaboration with the UPMC Adult Spina Bifida Clinic director, Brad Dicianno, MD, and the support of Cheyenne Hennen, BA, clinical research coordinator.
Pictured from left to right: Ted Allaire Barrios, PhD, Monica Albert Still, BSN, RN, Brad Dicianno, MD, and Cheyenne Hennen, BA.
Adapting Training to Meet Spina Bifida-Specific Needs
As Dr. Barrios explains, this initiative and subsequent grant application grew directly from conversations with adults living with spina bifida, peer support specialists, and clinicians from the UPMC Adult Spina Bifida Clinic.
“There was a clear and repeated theme that many adults with spina bifida had never been explicitly taught how to manage their own health care in a structured way,” Dr. Barrios says. “Given the number of specialists involved, the complexity of their medical needs, and the executive function challenges some individuals with spina bifida experience, it’s not surprising that navigating these complex health care systems can become overwhelming.”
The grant will support the development of a health-behavior intervention program designed to address spina bifida-specific issues. Still in development, this emerging program will engage adults with spina bifida in a strengths-based curriculum that emphasizes important skills, including task analysis, planning, problem-solving, distraction management, and self-advocacy via group learning and individualized coaching.
The program is designed to mitigate the impact of challenges related to executive function on the lives of adults with spina bifida.
Interdisciplinary and Skills-Based Approach
The Health Care Navigator Program is built upon expertise in neuropsychology, behavioral science, and rehabilitation medicine, reflecting the interdisciplinary model of the UPMC Adult Spina Bifida Clinic.
“Our goal is not to lecture about the importance of self-management, but to build the practical skills and self-efficacy needed to be successful in doing so,” Dr. Barrios says. “This will be accomplished through a structured, six-part curriculum conducted in a group setting with participants, and a final one-on-one session with each individual in which we can focus on specific areas our participants want to learn more about or practice.”
Measuring Outcomes and Planning for Program Sustainability
The efficacy and impact of the Health Care Navigator Program will be assessed through pre- and postintervention measures of relevant factors, like self-efficacy, grit, psychological flexibility, and self-management attitudes. Feedback from program participants will help to inform refinements to the program’s structure and operations with an eye toward sustainable integration into ongoing clinic operations.
“This program seeks to teach people with spina bifida to be their own case managers,” Dr. Barrios says. “It’s about empowering our patient population to advocate for themselves, ask the right questions, and keep their health on track.”
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