Spina bifida care, education, and research: A multidisciplinary community in a global context
Jonathan Castillo1, Heidi Castillo1, Judy K Thibadeau2
1Meyer Center for Developmental Pediatrics, Department of Pediatrics, Texas Children's Hospital and the Baylor College of Medicine, Houston, TX, USA.
Insights
Neural tube defects like spina bifida (SB) pose a global health challenge. Innovative, community-centered research and culturally competent care are essential for improving outcomes for individuals with SB.
Area of Science:
- Public Health
- Pediatric Rehabilitation
- Genetics
Background:
- Neural tube defects (NTDs), including encephalocele and spina bifida (SB), represent a significant global health burden.
- In the United States, Hispanic/Latino populations exhibit a higher prevalence of SB births compared to other ethnic groups.
- Individuals with SB face numerous challenges, including limited access to care, fragmented healthcare services, and insufficient adult support.
Discussion:
- Community-based participatory research (CBPR) and culturally competent learning collaboratives are proposed as innovative approaches to enhance inclusion and engagement.
- The Spina Bifida Association (SBA) has developed a Community-Centered Research Agenda, driven by the SB community.
- The Fourth World Congress on Spina Bifida Research and Care, hosted by the SBA in March 2023, highlights ongoing commitment.
Key Insights:
- Addressing health disparities in SB requires culturally sensitive and community-driven strategies.
- Parental involvement from diverse communities is crucial for developing effective interventions and support systems.
- The Spina Bifida Community-Centered Research Agenda signifies a proactive, patient-led approach to research priorities.
Outlook:
- Continued commitment from organizations like the SBA is vital for advancing SB care, education, and research globally.
- The Journal of Pediatric Rehabilitation Medicine aims to foster advancements in SB care and research worldwide.
- Future efforts should focus on implementing community-based research models to improve health equity for all individuals with SB.
Abstract:
Worldwide neural tube defects, such as encephalocele and spina bifida (SB), remain a substantial cause of the global burden of disease; and in the US, Latinos consistently have a higher birth prevalence of SB compared with other ethnic groups. From limited access and fragmented care, to scarcely available adult services, many are the challenges that besiege those living with SB. Thus, to provide inclusion and active involvement of parents of children and adults with SB from all communities, innovative approaches will be required, such as community-based participatory research and culturally competent learning collaboratives. Promisingly, the Spina Bifida Community-Centered Research Agenda was developed by the community of people living with SB through the Spina Bifida Association (SBA). Additionally, the SBA will host the Fourth World Congress on Spina Bifida Research and Care in March of 2023. Just as the SBA is clearly committed to this population, the Journal of Pediatric Rehabilitation Medicine will continue to serve as a catalyst for SB care, education, and research across the SB population in a global context.
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