Spinal Cord Injury Resources for the Patient and Family
James Rohde, MA
This article will examine two resources that assist families and individuals adjust to spinal cord injury (SCI). The first resource, “Family Adjustment to Spinal Cord Injury,” is from the University of Alabama, Birmingham, Spinal Cord Injury model program. This program helps to explain the emotional twists and turns that a person with SCI and his or her family experience as they adjust to the reality of this injury.
The article is available at www.images.main.uab.edu.
The stages outlined in this article will be described in the context of the issues that a patient with SCI at the Edward Hines VA Hospital in Hines, Illinois, and his family are experiencing.
The second resource is www.abledata.com, a website that covers all aspects of assistive technology for
individuals with disabilities. A summary of this database is presented so that families and professionals can tap into the material relevant to them.
“Family Adjustment to Spinal Cord Injury,” outlines the processes families pass through as they adjust to SCI. The resource cites denial as a possible first reaction to the injury and family members reading this may be relieved to learn that others have felt similarly overwhelmed by the circumstances of such an injury. This resource presents an opportunity for family members and persons with SCI to reflect, understand, and verbalize their reactions to the injury.
For example, a patient at the Hines VA Spinal Cord Injury Unit, who we will call Mr. K., initially denied the seriousness and permanence of his impairment. He had to adjust to the reality of life with a wheelchair. Another common reaction for families is relief that their injured family member is still alive. Mr. K., who lived with his mother, revealed that his siblings had all died relatively young, and a few died violently. Given the family history, he and his mother most likely felt relief that his injury was not fatal.
The University of Alabama resource presents the emotional cycles a family experiences in a realistic light. It neither hides from the truth, nor wallows in drama. If a family reads this information, they could very well recognize themselves in the account. The article cites the loss of independence that a family experiences. Mr. K., an electrician by trade, can no longer live with his mother or his niece. His mother, on the other hand, can no longer expect him to handle the electrical concerns in her home with ease as he had in the past. Now, he can only advise others on how to do the work. In addition, the niece with whom he lived cannot rely on his presence. When they see each other again, the dynamics will have changed dramatically. The niece may wonder what her uncle can do. “Can he still play with me?” and “Will he ask me for help with something that he used to do by himself?” are only two questions she may have. This family, and many others, will experience the entire process of adapting to new roles and abandoning the old roles as illustrated in the article.
The information acknowledges the role that anger can play in the family process. At the time of his injury, Mr. K. was considering marriage and had stable, but inaccessible, housing. Suddenly, he was injured, and the couple’s decision to marry became inextricably linked with his adjustment to a profoundly new way of living. The interdependence of two lives represented by marriage, a stressful arrangement under the best of circumstances, became even more complicated. The potential for anger had grown exponentially and the roles of both parties became open to question. Mr. K.’s fiancé has a 14-year-old son and the integration of a stepfather figure is difficult enough, let alone the integration of a stepfather with decided physical deficits.
Within this context, the article’s explanation of the role of acceptance is particularly powerful. It states, “There is no ‘justice’ in spinal cord injury.” Mr. K.’s family, already familiar with loss, would seem to have met its quota of “unfairness.” The family must energize to meet real world challenges when “fairness” dictates a respite from further troubles. Rolland (1994) discusses the pull inward that families experience as they endure the disability of one of its members. Those members who, developmentally, need to attach to peer groups are suddenly pulled toward the family and away from peers at the very time peers are becoming paramount. From a common sense developmental perspective, the fiancé’s son may need to separate from the family. The injury can unite a family in the interests of survival at the expense of the independence of individual members.
This resource discusses sex in frank terms. This is yet another of Mr. K.’s concerns. Combined with his anger and tenuous living situation, the uncertainty surrounding intimacy only compounds the situation. As the article describes, the issues addressed by this patient will improve with time. He has predicted a dire outcome for his upcoming marriage and stated that his situation was utterly hopeless. Despite his pessimism, he now can perform all activities of daily living independently. This development shocked him––so much so that he expressed dismay at the high expectations of staff for his level of independence. This article is a solid resource in understanding the biopsychosocial and family concerns faced by those with SCI.
The database, www.abledata.com, presents non- biased information on assistive technology of all kinds. There are twenty categories of products: Architectural Elements, Blind and Low Vision, Communication, Computers, Controls, Deaf/Hard of Hearing, Deaf/Blind, Education, Home Management, Orthotics, Personal Care, Prosthetics, Recreation, Safety and Security, Seating, Therapeutic Aids, Transportation, Walking, Wheeled Mobility, and Workplace.
The Information Center has nine sections: Assistive Technology and Disability Services, Consulting Services, General Disability Resources, People, Resources on Assistive Technology and Disability, Resources for Specific Disabilities (including 5,998 products for SCI!), State and Local Resources, U.S. Government Resources, and Workplace Resources. In the Consumer Forum, consumers can write reviews of the products they have used. ABLEDATA does not sell products and is careful to present information about assistive technology, avoiding recommending particular products. Manufacturers can respond to the reviews. There is a Frequently Asked Questions segment, as well as sections on News You Can Use, Upcoming Conferences, Publications, a Library, International Resources, and Links A-Z. The National Institute on Disability and Rehabilitation Research (NIDDR) sponsors ABLEDATA, which is part of the Office of Special Education and Rehabilitative Services (OSERS), in the U.S. Department of Education.
The two resources cited in this article can assist professionals and families by guiding the family assessment and intervention processes. “Family Adjustment to Spinal Cord Injury” follows families through the complicated process of recovery and adjustment. Many professionals could benefit from using this article to orient their clinical thinking. ABLEDATA is a comprehensive resource that should provide a wealth of ideas to professionals and families as they strive together toward adjustment and growth.
REFERENCE
Rolland, J. S. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.
James Rohde, MA, is a second-year graduate student at Loyola University Chicago School of Social Work.