Special Feature

NEEDS ASSESSMENT OF VIRGINIANS WITH SCI

When we obtained funding for our project, Needs Assessment of Virginians with SCI, we knew we were taking on a big task. Now as we go into our third and final year, we are extremely excited about what has been accomplished and are looking forward to making our results available to the CNI as well as to community agencies and organizations.

The SCI needs assessment project grew out of a perceived need to better understand and document the needs of persons living with SCI in Virginia and their families. The project has three separate components. First we completed a qualitative evaluation of the needs and concerns of persons with SCI through semi-structured interviews and focus groups. These were conducted with persons with SCI from underserved populations (e.g., women, children, and individuals from racial and ethnic minority groups).

Participants were asked about what challenges and issues they faced as a result of their injury, what resources and strategies were most helpful to them, and what their experiences had been with regard to family and personal relationships since their injury. Questions also addressed access to health care and other community services, and explored work-related issues. Participants were also asked to discuss whether they had experienced discrimination in the health care system, community or elsewhere during or following their rehabilitation or and the health care. Interviews and focus groups took place in the Richmond Metropolitan area as well as Northern Virginia, the Virginia Beach area and Harrisonburg. In total, we had 77 participants, including 9 caregivers.

The dialogues have given us a wealth of information regarding the hurdles persons with SCI need to overcome and the strategies they utilize to do so. We were impressed with their determination and motivation to adapt. In addition, our participants gave us tremendous insight into where the system needs to be changed in order to better meet their needs. We have already begun disseminating our finding at professional conferences and lectures.

As part of this project, we also completed an update of the state-mandated Spinal Cord Injury Registry, which is composed of all persons who sustain a SCI in the state of Virginia.

That updated list was used for the distribution of a comprehensive survey exploring the needs of persons with SCI. Issues raised by participants in our focus groups and interviews were incorporated into the survey. Also, during those groups and interviews, we realized the important role caregivers play in the adjustment of persons with SCI. Therefore, a caregiver survey was developed and mailed with the survey packet. The survey was available on-line and persons could complete the survey over the phone. A Spanish version was also available upon request. To date, over 500 surveys and 300 caregiver surveys have been completed. We are in the process of analyzing survey results now.

Results from the survey will be distributed throughout Virginia or can be requested from the research team. The final report (expected in December 2005) will combine results from both aspects of the project and will provide a focused examination of key questions, issues and recommendations raised during the process. We plan to make our findings available to appropriate agencies, organizations and advocacy groups. We believe that the results of this project will truly benefit persons with SCI as new strategies to serve these persons and their families are developed, and want to thank the CNI Trust for their support.

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