Overview of Needs Assessment of Virginians with Spinal Cord Injuries

This qualitative study is funded through the Commonwealth Neurotrauma Initiative in order to conduct a statewide assessment of the needs of Virginians with traumatic spinal cord injury (SCI) and their family members. The study is being conducted by Michelle Meade, Ph.D., of the Department of Physical Medicine and Rehabilitation, VCU, Njeri Jackson, Ph.D., Chairman of the Department of African American Studies at VCU, and Kirsten Barrett, Ph.D. of the VCU Survey Research Lab. The purpose of the needs assessment is to identify the current met and unmet needs of individuals living with SCI in Virginia . The information generated will be invaluable to service providers, community-based organizations, advocacy groups, and state and local agencies that continually strive to refine and develop programs to best meet the needs of those in the SCI community.

The needs assessment has three distinct components. First, we will be conducting interviews and focus groups with racial / ethnic minorities, woman and children with SCI. These populations are being targeted because their needs and problems have been underrepresented in the SCI research literature. Trained facilitators will conduct the focus groups and interviews at several locations around the state. Advertisement cards will be sent using mailing lists such as those of the local chapters of the National SCI Association, and Paralyzed Veterans Association, VCU/MCV SCI Model Systems. In addition cards will be placed at sites where persons with SCI might visit. Advertisements will also be placed in appropriate publications in order to recruit participants. It is expected that approximately 100 individuals will take part in these groups, including a small number who will be individually interviewed . We are very interested in hearing from individuals who may not have had a voice in the past, so that the qualitative information reflects both the under-served as well as those we regularly encounter in our systems. The individual interviews will take place in order to include those who prefer not to be in a group setting and those who have transportation issues. This study has been approved by the VCU IRB and confidentiality of all participants will be assured.

Second, we will be updating the Virginia SCI Registry. Individuals already on the registry will be contacted to verify and update information. We will attempt to locate persons with SCI not already on the registry using advertisements and appropriate mailing lists as mentioned above.

Finally, we will conduct a statewide survey of all Virginians with SCI. Information collected from the focus groups will be utilized along with input from agencies serving persons with traumatic SCI and information obtained from an extensive literature search to ensure that the survey instrument is culturally appropriate and addresses the broad range of needs and concerns of persons living with SCI in Virginia . The Registry will be used for survey distribution, although participants will have the option to participate in the survey without being placed on the Registry. The results of this three-year study will be distributed to agencies and organizations serving persons with SCI, as well as policy makers.

In order to successfully complete this ambitious study, we need the assistance of organizations and agencies throughout the state so that we may recruit focus group and interview volunteers, and locate individuals with traumatic SCI to participate in the survey.

For additional information, please contact Phyllis S. Ellenbogen, Project Coordinator, at (804) 828-7962 or pellenbogen@vcu.edu.