A spinal cord injury (SCI) is damage to the spinal cord by a direct injury or from damage to the tissue and bones that surround the spinal cord. The damage from an SCI may result in temporary or permanent changes in sensation, movement, strength, and body functions below the site of the injury. People with SCI may also experience secondary conditions, such as diabetes, pressure injuries, chronic pain, or bladder and bowel dysfunction. People with SCI have the right to live as independently as possible and to fully participate in their communities. However, they may face barriers to living independently and participating in their communities, such as physical, attitudinal, and programmatic barriers to employment, education, healthcare, and recreation. NARIC’s information specialists are often asked for information and resources that may assist people with SCI participate in their communities. We would like to highlight some of the consumer products from the NIDILRR community for people with SCI, their families, and the service providers that support them. These consumer products may include guides, factsheets, videos, and more.
Below, you will find just a few examples of evidence-based consumer products produced by the NIDILRR community:
- The University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS) is one of 14 SCI Model System Centers providing comprehensive, multidisciplinary rehabilitation services to people with SCI as a basis for conducting research that contributes to evidence-based rehabilitation interventions and clinical and practice guidelines. The Center provides resources that include evidence-based factsheets, newsletters, and tip sheets on a variety of topics, including secondary conditions, weight management, wheelchair positioning, and more. The Center’s videos include a series on secondary conditions of SCI, a series on reproductive health for women with SCI, and the EatRight Weight Management Program, which includes a workbook that participants may use during the program.
- The Spaulding New England Regional SCI Center, also an SCI Model System Center, developed the New England SCI Toolkit for healthcare providers assisting patients with SCI. The toolkit can be an educational resource to help improve outcomes while decreasing the frequency of secondary complications associated with paralysis. The toolkit covers patient/caregiver education, autonomic dysreflexia, skin care, bladder and bowel management, sexual health and fertility, and spasticity.
- The ADA National Network Knowledge Translation Center (ADAKTC) facilitates the coordination, organization, and collaboration among the ADA National Network Centers and generates new knowledge about optimal ways to enhance people’s knowledge about their rights and responsibilities under the Americans with Disabilities Act (ADA). The ADAKTC provides resources on the ADA for people with SCI or other disabilities, their families, organizations, and businesses. The resources include factsheets, videos, and frequently asked questions on topics covered by the ADA, such as education, employment, transportation, and hospitality. Contact your ADA Regional Center to learn more.
- The Model Systems Knowledge Translation Center (MSKTC) advances knowledge translation among Model System grantees to ensure that SCI research is relevant and accessible to people with SCI and their families; researchers; practitioners and clinicians; and policy makers and advocates. In collaboration with the SCI Model Systems, MSKTC develops evidence-based resources for people with SCI, their families, and service providers that are available in a variety of formats, such as printable PDF documents, infocomics, videos, and slideshows. MSKTC’s SCI hot topic modules consist of a suite of resources to support people with SCI in learning about exercise and fitness after SCI, managing their bowel function, and managing their pain. Finally, MSKTC provides a series of factsheets in English and Spanish for people with SCI and their families.
Are you a person with SCI, family member, or service provider looking for information and resources on COVID-19 and SCI? The South Florida Spinal Cord Injury Model System has evidence-based information and resources on COVID-19 and SCI, which also includes information on the vaccine.