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Identifying the best measure of participation: A Collaborative National SCI Database Module

PI: Gale Whiteneck, PhD
Funded by: National Institute on Disability and Rehabilitation Research
Grant Number: H133N060005
Dates: 2006 - 2011
Contact: Susan Charlifue – Susie@craighospital.org 303 789 8306

Full participation after SCI or any other disability is exemplified by being an active, productive member of society, well integrated into family and community life. Full participation has been described as the ultimate goal of rehabilitation and the primary concern of people with disabilities. The extent to which a person with SCI, or any other disability, fully participates as a member of society is a function of the interaction between the individual’s impairments, activity limitations, and personal attributes on the one hand; and the physical, attitudinal, and policy environmental barriers and facilitators on the other. All major conceptual models of disability support this person/environment interaction to explain variations in participation, yet without an appropriate, psychometrically-sound, agreed-upon standard method of measuring participation, the validity of such models cannot be assessed, and progress toward implementing interventions to improve the lives of people with disabilities cannot be tracked.

To address the importance of participation coupled with the current absence of a standard acceptable measure of participation, the Rocky Mountain Regional Spinal Injury System (RMRSIS) at Craig Hospital is leading a study to identify the best existing measure of participation or combine the best items from existing measures of participation to form a new and improved tool with better psychometric properties.

The study questionnaire includes items from four of the most promising, recently developed participation measures. Questionnaires are administered to individuals with SCI who are enrolled in the RMRSIS and are administered in conjunction with routine SCI Model System data collection. Collaborating partners in this study include the SCI Model Systems in Boston Massachusetts, Atlanta Georgia, Ann Arbor Michigan, Cleveland Ohio, New York City, West Orange New Jersey and Chicago Illinois.