Answered Questions: Monthly News for the Disability Community for April 2016

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned below is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked. This month’s question is: What is a spinal cord injury? This edition of Answered Questions includes items that define what a spinal cord injury (SCI) is and discuss the use of science and technology to improve the lives of people with SCI, the use of wearable robots for independent living, factors that influence self-care, women with SCI and neurogenic bladder and bowel, new technology for the treatment of SCI, physiotherapy and its different objectives, sexuality and SCI, and employment after SCI.

What is a spinal cord injury?

The National Institute of Neurological Disorders and Stroke (NINDS) states that an SCI “begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae.” The blow can cause the displacement of bone fragments, disc material, or ligaments that bruise or tear into spinal cord tissues. They also state that an injury is more likely to cause fractures and compression of the vertebrae, which then can crush and/or destroy axons – the extensions of “nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body.” Spinal cord injuries are either complete or incomplete. When an injury is incomplete, it means that “the ability of the spinal cord to convey messages to or from the brain is not completely lost.” On the other hand, a complete injury is “indicated by a total lack of sensory and motor function below the level of injury.” Treatment for SCI is as varied as the severity and types of SCI. Treatments include respiratory therapy for those with respiratory complications, drug therapies, electrical stimulation of nerves, and rehabilitation programs that include physical therapies and counseling.

NIDILRR Projects:

NERSCIC: Improving the Lives of People with SCI Across the Lifespan Through Innovative Science and Technology (90SI5013) has four objectives: (1) improve the health and function of people with SCI through the expansion of the New England SCI Toolkit, along with regional dissemination and technical support; (2) utilize innovative technology to improve the health and function across the lifespan of people with SCI through improved access to care and better outcome measures; (3) translate and disseminate knowledge, measures, and resources for professionals and consumers in collaboration with the Model Systems Knowledge Translation Center (MSKTC) on a national and regional level to improve function and help prevent secondary conditions; and (4) empower and engage the SCI community in all clinical, educational, and research activities. NERSCIC is a Model System that is a partnership between Boston University Medical Center in Boston, MA, Gaylord Hospital in Wallingford, CT, and Hospital for Special Care in New Britain, CT. Through its projects and studies, NERSCIC is investigating the equity and quality of assistive technology provision and outcomes for people with SCI. To learn more about NERSCIC and to participate in their research studies, please visit www.bu.edu/nerscic/. (In English).

The Rehabilitation Engineering Research Center (RERC) on Wearable Robots for Independent Living (90RE5021) is a joint effort between the New Jersey Institute of Technology (NJIT) and the Kessler Research Foundation and conducts research and development activities that are centered on wearable robots for independent mobility and manipulation. This RERC is comprised of three research and two development projects, along with a portfolio of training activities. Two of the research projects use three commercially available, lower extremity exoskeletons: one research project is specific for people with SCI and the other for people who have had a stroke. The third project is researching how a home-based robotic rehabilitation of the upper extremities in people who have had a stroke. The first development project explores the use of robotic admittance control as a way to allow users of a lower extremity exoskeleton to have complete control of the movement of their legs. The second development project extends the upper extremity orthosis developed at NJIT to meet the needs of children with muscular dystrophy and people of all ages with incomplete tetraplegia due to SCI. The training activities include a new continuing education course for clinicians and physicians on wearable robotic applications, along with a new graduate course on the design of wearable robots for engineering robots. (In English).

If you would like to learn more about NIDILRR funded projects that are related to SCI, check out this search completed by our information specialists.

Research:

Factors influencing self-care behaviors in persons with spinal cord injuries and disorders (J73145) describes a study that examined the relationship between the perceptions of independence in performing self-care and resilience as reported by veterans with spinal cord injury/disorder (SCI/D) and identified variables that are associated with high self-care scores while controlling for confounders. In the study, bivariate analyses were conducted so as to examine differences in demographic, injury, and health characteristics and resilience scores in people with SCI/D. Results showed that the level of injury, resilience, marital status, and living arrangement were positively related to higher self-care behaviors. Meanwhile, age, age at injury, completeness of the injury, and the number of comorbid health conditions showed negative relationships with higher self-care. It is important to understand the profile of individuals with SCI/D in regards to self-care behaviors in the development of individual interventions to improve self-care. (In English).

Neurogenic bladder and bowel (NBB) is a chronic condition that hinders the functioning and quality of people with SCI. Women’s experiences of living with neurogenic bladder and bowel after spinal cord injury: Life controlled by bladder and bowel (J73311) describes a study that explored the experiences of women living with SCI and NBB. A secondary analysis was conducted of semi-structured interviews from a larger qualitative study of 50 women with SCI. Six meta-themes were identified and the results describe concerns, strategies, and the detrimental impact of NBB in the lives of these women. The findings of this study may assist policy makers and healthcare and rehabilitation professionals to improve accessibility and quality of life for women with SCI and NBB. (In English).

If you would like to learn more about SCI and related topics in the NARIC collection, please check out this search created by our information specialists. You can also check out some of our other searches in the Further Research section of this article under REHABDATA. Or check out REHABDATA to conduct your own searches.

Technology:

New technology for the treatment of spinal cord injury (el Hospital – Mexico). This article describes the work of a team of scientists in Mexico who have developed a technology to treat SCI through the use of polymers. The treatment consists of implanting a biocompatible semiconductor polymer that has the capacity of realizing a reconnection between the affected cells through neuroprotective mechanisms or through regeneration of the nervous system. The experimental phase was completed through the use of a primate and some rats. According to the researchers, the results for the primate have been favorable since the primate’s body accepted the implant and the primate developed neuronal reconnection. As a consequence, the animal was able to regain some of its reflexes. It was observed that the rats were able to achieve a partial recuperation. The researchers are currently working on the clinical protocol to be able to test the procedure in people. Currently, the procedure is not accepted on a world level; however, the method and technology is in use in the United States, Japan, Russia, and Mexico.

Rehabilitation:

Spinal Injury Treatment: A Guide to Treatment for People with Spinal Injuries (terapiafisica.com) describes the primary objectives of physical therapy for people with spinal injuries. The guide also describes the pillars of this type of treatment. These pillars include movement therapy, activities of daily living training, water therapy, and respiratory therapy. It also includes the main objectives of these therapies.

Employment:

Employment after a spinal cord injury (SCI) (Duke HomeCare and Hospice) discusses different options to return to work after SCI. This webpage shares advice on what to do if you already have employment, including adaptations and accommodations. It also discusses vocational rehabilitation programs, other ways to find employment, options if you are not able to work, and knowing your rights such as under the Americans with Disabilities Act (ADA). The page also includes resources such as the VA Vocational Rehabilitation and Employment Program.

Human Interest:

Spinal Injuries and Sexuality (CIRRIE) describes how in the last decade a gradual emphasis has been placed in the improvement of the quality of life and community inclusion of people with spinal injuries, especially in the field of rehabilitation. With this in mind, it is important to address the problems of sexuality relative to acute and chronic state of the spinal injury. The article states that the best procedure for sexual education for people with spinal injuries and their loved ones is through an interdisciplinary team who will be able to address these issues through the use of medical and psychological methods. The article goes on to discuss sexual function in men, female sexual function, psychological considerations, contraception, transurethral treatments, pregnancy, and other related topics. It also includes a bibliography and suggested reading list.

Resources:

  • Christopher and Dana Reeve Foundation (USA) provides information for people living with spinal cord injuries and paralysis, caregivers, and on secondary conditions. They also have a research section that provides information on their rehabilitation network, clinical trials network, and a research consortium on SCI. They also provide support through their “Ask Us Anything” program and providing a peer mentor and provide a way to get involved by becoming a peer mentor, advocate for change, or by joining Team Reeve. You can find resources in your area through their Resource Map. Their Paralysis Resource Center also provides international support in Spanish, Chinese, Japanese, Korean, Vietnamese, Tagalog, and Hindi.
  • The NIDILRR funded Model System Knowledge Translation Center (MSKTC) provides a fact sheet in English and Spanish titled “Employment after a Spinal Cord Injury”. The factsheet includes information on several laws that protect people with disabilities, including the ADA and the Individuals with Disabilities Act (IDEA). It also discusses vocational rehabilitation, assessment, how to start receiving support at work, the employment market place, and types of accommodations. It also includes resources that you can use to find employment and related topics, such as social security and vocational rehabilitation.
  • Librarian’s Picks: Spinal Cord Injury (NARIC) is a guide from the National Rehabilitation Information Center (NARIC) on resources in the US for people with SCI. The guide is divided into sections including health and wellness, information and support, rehabilitation and therapy, and assistive technology. These are just some of the go-to resources used by NARIC’s information specialists. If you would like to learn more, please contact NARIC by calling 800/346-2742, email, or chat.

Further Research:

About mpgarcia

I'm the Bilingual Information/Media Specialist at NARIC.
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