| 1. |
- Carney, J., et al.
(författare)
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Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set
- 2019
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Ingår i: Spinal cord series and cases. - : Nature Publishing Group. - 2058-6124. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- Study design:Consensus among international experts.Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. Setting: International expert working group.Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA.Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools.Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed.Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).
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| 3. |
- Roaldsen, Kirsti Skavberg, et al.
(författare)
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Pediatric spinal cord injury rehabilitation : A protocol for an international multicenter project (SINpedSCI)
- 2022
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 15:2, s. 395-403
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with >= 20 adolescents aged 13-17 years at least 6 months post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.
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