International collaborations on advocacy, education, and research: Broad-spectrum thematic diversity catalyzes multidisciplinary spina bifida care

Castillo, Jonathan; Thibadeau, Judy; Brei, Tim; Castillo, Heidi

doi:10.3233/prm-239016

Cited by 3 publications

(2 citation statements)

References 6 publications

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“…The global health symposium at the 2023 Spina Bifida World Congress (SBWC) provided inspiration for what can be accomplished when global health [1][2][3][4][5] principles such as collaboration, advocacy, and political will are linked with biomedical research and clinical care [6]. For example, advocacy by the Global Alliance for the Prevention of Spina Bifida resulted in the passage in May 2023 of a resolution by the World Health Assembly to accelerate food micronutrient fortification worldwide [7][8][9].…”

Section: Introductionmentioning

confidence: 99%

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Dosa,

Ahmed,

Alriksson-Schmidt

et al. 2023

PRM

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PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees. METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022–23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content. RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings. CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.

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Section: Introductionmentioning

confidence: 99%

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Dosa,

Ahmed,

Alriksson-Schmidt

et al. 2023

PRM

Self Cite

View full text Add to dashboard Cite

show abstract

“…Therefore, whether it is for the needed collaboration on folic acid fortification or the standardization of care and research efforts concerning NBD, a global forum for professionals working on SB-related issues is critically needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a timely catalyst for the transnational dialog and efforts in the field of NTD research [ 5 ]. As the only international conference dedicated solely to comprehensive SB research, it showcased the landscape of investigation and addressed current gaps and opportunities in SB care.…”

mentioning

confidence: 99%

From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations

Castillo,

Thibadeau,

Brei

et al. 2023

PRM

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Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics’ Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.

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‘And then there was silence’: shaping practice through the experience of parents’ emotions

Levy

2023

Journal of Research in Nursing

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Background: Spina bifida, the most common Neural Tube Defect occurring around 28 days following conception, is often discovered in a routine ultrasound examination. Nurses offer continuous support for families who care for children with disabilities, associated with this diagnosis. Aim: To articulate and analyse parents’ recollection of the emotions they experienced when they were informed by professionals that their unborn baby may have neurological disabilities. Method: Qualitative study, using participatory visual narrative method, engaging parents caring for young children with Spina bifida. Results: The emotions parents described, surfacing at the point of diagnosis, and the crafted stories they shared, demonstrated the significance and the long-lasting impact of their experience. Disclosing sensitive information and the way it is shared has a significant role in shaping how families adjust to caring for disabled children. Conclusion: Role and care transitions of parents who choose to keep their babies, despite their impending disability, is a lengthy and complex process. Nurses should be aware of and informed by the origin story, to offer appropriate support throughout this period. Policies to promote integration with services delivered by ‘not for profit’ organisations will benefit family-focused and person-centred care.

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International collaborations on advocacy, education, and research: Broad-spectrum thematic diversity catalyzes multidisciplinary spina bifida care

Cited by 3 publications

References 6 publications

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

Spina Bifida Global Learning Collaborative: Educating the next generation of clinicians, researchers, and advocates

From prenatal care to spina bifida related mortality: The lifespan is marked by transitions experienced by increasing immigrant and international populations

‘And then there was silence’: shaping practice through the experience of parents’ emotions

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