Journal of Pediatric Rehabilitation Medicine - Volume 10, issue 3-4
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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach is an international journal designed to parallel the multi-disciplinary team approach of caring for a child with an acute or chronic disease. The issues will primarily be themed and broad in scope including, but not be limited to cerebral palsy, traumatic brain injury, spinal cord injury, spina-bifida, amputation, muscular dystrophies of all types, stroke, cancer, mental retardation, developmental delays, and others.
The aim is to include a wide range of experts who care for children with the above diagnosis. Authorship by two different disciplines is requested though not required to encourage an interdisciplinary and collaborative approach. The goal is for the reader to obtain not just the medical perspective, but also nursing, occupational, physical and speech therapy, psychology, home care, etc., in providing the most comprehensive care for children. Manuscripts will be blinded and peer reviewed with appropriate feedback. Statistical analysis will be reviewed by the biostatistician. Readers are encouraged to submit and or suggest case reviews, commentaries, editorials, original research, conference schedules, or reviews.
Abstract: Self-management has become a central concept in individual and family-centered care. However, there are differences in both definitions and theoretical approaches that guide clinical practice and research in this emerging science. Review of theoretical approaches can assist clinicians and researchers to identify the framework or theory that best fits their approach to practice or research question. The evidence on self-management in spina bifida since the 2003 research priorities were first established is discussed and the implications for theory-based future practice and research delineated. Resources for collaborative research and practice in self-management are provided.
Abstract: PURPOSE: The purpose of this article is to provide perspectives pertaining to the importance of fostering comprehensive self-management competencies of AEA-SHCN, with attention directed to AEA with spina bifida based upon the Health Care Transition Research Consortium Health Care Transition model. This article is based upon the plenary presentation given at the Spina Bifida 3rd World Congress, entitled, Self-Management and Health Care Transition: Trials, Tribulations and Triumphs. METHOD: A historical perspective of healthcare transition initiatives and best practice guidelines is provided that have influenced the field of research and practice. Relatively scant attention has been directed…to the development and refinement of self-management competencies prior to the transfer of care and transition to adulthood. Against this backdrop of the predominant framework of care focused on the transfer of care, a discussion of our team’s experience with the provision of healthcare transition services and the complexity of addressing the self-management needs of the adolescents and emerging adults (AEA) with spina bifida served in the Movin’ On Up HCT program will be presented. RESULTS: Through our clinical and research healthcare transition experience, insights pertaining to self-management will be presented. CONCLUSION: The acquisition of self-management knowledge and skills is a complex process that extends far beyond learning the fundamental skills of daily condition management.
Keywords: Spina bifida, health care transition, self-management
Abstract: Regenerative medicine as it applies to spina bifida is a multi-pronged endeavor involving spinal cord repair, tissue engineering and fetal regeneration, all of which can mutually overlap to variable extents. The efforts involving spinal cord repair, whether they be cell-based or not, are virtually indistinguishable from the enormous body of work related to spinal cord recovery after traumatic injury. Tissue engineering, on the other hand, can involve a variety of structures besides constructs used for covering the spina bifida defect, for example the urinary bladder, bone, muscle and skin. This brief review will not delve into any of these two…main areas, which actually can also involve fetal interventions within their respective realms, but rather be devoted to a very recent development making use of the uniquely enhanced ability of the fetus to repair, or regenerate areas of tissue damage, coined transamniotic stem cell therapy, or TRASCET. TRASCET is a still experimental therapeutic paradigm for the treatment of not only spina bifida, but also other birth defects, based on the principle of harnessing/enhancing the normal biological role of a select population of stem cells that naturally occur in the amniotic fluid, specifically amniotic fluid-derived mesenchymal stem cells (afMSCs), for therapeutic benefit.
Abstract: It has been estimated that 60–70% of neural tube defects (NTDs) have a genetic component, but few causative genes have been identified. The lack of information on genes associated with non-syndromic NTDs in humans is especially notable as the “genomic revolution” has led to new tools (e.g., genome-wide genotyping arrays, next-generation sequencing) that are helping to elucidate the full spectrum of genetic variation (from common to rare) contributing to complex traits, including structural birth defects. However, the application of modern genomic approaches to the study of NTDs has lagged behind that of some other common structural birth defects. This may…be due to the difficulty of assembling large study cohorts for anencephaly or spina bifida. The purpose of this review is to outline the evolution of genetic studies of NTDs, from studies of familial aggregation to candidate gene and genome-wide association studies, through whole-exome and whole-genome sequencing. Strategies for addressing gaps in NTD genetic research are also explored.
Keywords: Epidemiology, genetics, human studies, neural tube defects, spina bifida
Abstract: Children with developmental disabilities may be at greater risk for experiencing maltreatment and traumatic events, threats to their physical and psychological safety and well-being. Young children and youth with spina bifida benefit from being considered in light of this risk, and may be especially vulnerable given the complexity of their neurodevelopmental condition. A trauma-informed approach brings together evidence from the neurosciences, epidemiology and psychology to promote improved developmental, behavioral, physical and mental health status. Incorporating a trauma-informed approach strengthens a longitudinal, interdisciplinary and developmentally-oriented care model for children and youth with spina bifida. A case example further illustrates how using…a trauma-informed approach and evidence-based interventions can foster the development and well-being of youth with spina bifida who have been impacted by a traumatic event.