Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set

Spinal Cord Series and Cases, 2019 · DOI: 10.1038/s41394-019-0229-1 · Published: August 11, 2019

Spinal Cord Injury Education Research Methodology & Design

Simple Explanation

This study aimed to create a standardized data set for assessing the educational experiences of children and youth with spinal cord injury/dysfunction (SCI/D). The goal was to develop a tool to collect essential information about their education. The data set includes 16 items divided into three areas: the school environment and support services, how well the student participates in school and their academic achievements, and any obstacles or attitudes that affect their education. This helps create a comprehensive picture of their educational journey. The final data set is designed for children and adolescents in primary and secondary education, excluding those in higher education or vocational training. It aims to provide a consistent way to gather and report key information relevant to their educational experiences.

Study Duration

1 year (2017-2018)

Participants

International expert working group

Evidence Level

Consensus among international experts

Key Findings

1
The International SCI/D Education Basic Data Set Version 1.0 consists of 16 items. These items are categorized into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes.
2
Many variables within the data set are adapted from existing and established measures. Only items deemed internationally relevant were included, ensuring broad applicability.
3
The data set is designed for children and youth up to and including high school, excluding those in higher education or vocational training.

Research Summary

The study developed the International SCI/D Education Basic Data Set to standardize the collection of essential information about the educational experiences of children and youth with SCI/D. The data set includes 16 items across three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes, drawing from existing measures and expert consensus. The data set is intended for use with school-aged individuals up to high school and requires further validation to ensure cultural relevance, reliability, and feasibility.

Practical Implications

Standardized Data Collection

Provides a uniform method for documenting the educational experience of students with SCI/D, enabling consistent data collection and comparison across different settings and populations.

Improved Educational Planning

Can be used as a tool during the educational referral and planning process, aiding in the overall understanding of school experience by children with SCI/D.

Potential for Wider Use

Has the potential to be utilized in both wider health care and educational environments, enhancing the monitoring process and educational outcomes for children with SCI/D.

Study Limitations

1
Requires further validation studies to ensure cultural relevance, reliability, and feasibility.
2
The data set is not intended for emerging adults in higher education or postsecondary vocational education.
3
The data set is not a standardized evaluation tool.

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