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Spinal Cord Injury
Social workers have been in the forefront of personnel involved in the care and rehabilitation of people who experience spinal cord injury or disease, whether a result of trauma or during the gestational process. Attending to clients’ holistic needs, including the psychosocial dimensions associated with spinal cord injury or disease, provide opportunities for social workers to demonstrate their systemic approach to optimizing well-being. Spinal cord injury or disease, by definition, means that the client must address challenges related to dependency and independence, mobility and self-care. There is also a need for the appropriate mobilization of family members as well as support for family members and from them in relationship to their loved one. Although much research associated with spinal cord injury focuses on neuro-regenerational approaches, this research Web page provides an overview of the profession’s efforts to establish an evidence-basis for psychosocial care and social work interventions related to spinal cord injury and disease.
The scope of spinal cord injury alone is depicted in the following statistics:
- Nearly 200,000 people in the United States live with a disability related to a spinal cord injury (SCI) (Berkowitz, 1998).
- Approximately 11,000 Americans sustain an SCI each year (CDC unpublished data).
- SCIs cost the nation an estimated $9.7 billion each year (Berkowitz, 1998).
(Retrieved from http://www.cdc.gov/ncipc/factsheets/scifacts.htm on 4/12/06)
Definitions
Spinal cord damage can result from trauma or disease, or can be present at birth due to a variety of etiologies. Although there are some similarities in managing the damage based on the source, different needs and approaches may also be required, for example, when an adult experiences the loss of mobility and independence, or when a family addresses the development needs of a child. Likewise, neuro-degenerative disease often carries issues related to progressive immobility and end-of-life decision-making.
The National Institute of Neurological Disorders and Stroke (NIH/NINDS) provides information on the full range of spinal cord malfunction. The following three examples show the variation among injury, neuro-tissue damage, and congenital damage. For more info see http://www.ninds.nih.gov.
A spinal cord injury usually begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae. The damage begins at the moment of injury when displaced bone fragments, disc material, or ligaments bruise or tear into spinal cord tissue. Most injuries to the spinal cord don't completely sever it. Instead, an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons, extensions of nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body.
(Retrieved from http://www.ninds.nih.gov/disorders/sci/sci.htm#What_is on 4/12/06)
Brain and spinal cord tumors are abnormal growths of tissue found inside the skull or the bony spinal column, which are the primary components of the central nervous system (CNS). Benign tumors are non-cancerous, and malignant tumors are cancerous. The CNS is housed within rigid, bony quarters (i.e., the skull and spinal column), so any abnormal growth, whether benign or malignant, can place pressure on sensitive tissues and impair function. The cause of most primary tumors remains a mystery. They are not contagious and, at this time, are not preventable. Symptoms of brain tumors include headaches, seizures, nausea and vomiting, vision or hearing problems, behavioral and cognitive problems, motor problems, and balance problems. Spinal cord tumor symptoms include pain, sensory changes, and motor problems.
(Retrieved from http://www.ninds.nih.gov/disorders/brainandspinaltumors/brainandspinaltumors.htm on 4/12/06)
Cephalic disorders are congenital conditions that stem from damage to or abnormal development of the budding nervous system. Most cephalic disorders are caused by a disturbance that occurs very early in the development of the fetal nervous system. Damage to the developing nervous system is a major cause of chronic, disabling disorders and sometimes death in infants, children, and even adults. Cephalic disorders may be influenced by hereditary or genetic conditions or by environmental exposures during pregnancy (e.g., medication taken by the mother, maternal infection, exposure to radiation).
(Retrieved from http://www.ninds.nih.gov/disorders/cephalic_disorders/cephalic_disorders.htm on 4/12/06)
As with other NASW research Web pages, a list of research abstracts are included to show the breadth of research and practice interests, as well as online resources for exploring additional information.
Resources
National Institute of Neurological Disorders and Stroke (NIH/NINDS)
http://www.ninds.nih.gov
This Web site provides the latest research findings, clinical trials in progress, and information on a broad range of medical issues.
National Library of Medicine – PubMed
http://www.ncbi.nlm.nih.gov
The National Center for Biotechnology Information (NCBI) is a joint venture of the National Institutes of Health (NIH) and the National Library of Medicine (NLB), and is a free search engine linking to thousands of articles related to spinal cord injury and disease.
Centers for Disease Control and Prevention (CDC)
National Center for Injury Prevention and Control (NCIPC). http://www.cdc.gov/ncipc/factsheets/sciprevention.htm
National Center for Birth Defects and Developmental Disabilities
http://www.cdc.gov/ncbddd/dh/infocenters.htm
These CDC Web sites provide helpful tips, references, and links related to prevention and the care and treatment of people who have spinal cord injury or developmental disabilities.
American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW)
www.aascipsw.org/
Founded in 1986, AASCIPSW is an organization of psychologists, social workers, and more recently, licensed mental health counselors who provide for the emotional, behavioral, and psychosocial care of people affected by spinal cord impairment (SCI). The focus of this professional society is to:
- Advance, foster, encourage, promote, and improve psychosocial care of people with SCI
- Develop, advance, and improve education and research related to the psychosocial care of people with SCI
NASW recently formalized its relationship with AASCIPSW through a memorandum of understanding. The AASCIPSW Web site includes resources such as the following:
Christopher Reeve Foundation
http://www.christopherreeve.org
The Christopher Reeve Foundation is committed to finding treatments and cures for paralysis caused by spinal cord injury and other neurological disorders, and improving the quality of life for people living with disabilities.
National Multiple Sclerosis Society
http://www.nmss.org/
The National MS Society is the largest private sponsor of MS research in the world. They support research and training projects aimed at finding the cause of MS, better treatments, and a cure. The MS Society also identifies promising areas of research and promotes activity in those areas. The Society's Professional Resource Center, which houses the most comprehensive library of MS information in the world, provides a variety of information and consultation services.
National Spinal Cord Injury Association
http://www.spinalcord.org/
The National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. This Web site contains practice resources as well as information about current research studies and how to participate in them.
Spina Bifida Association of America.
http://www.sbaa.org/site/PageServer?pagename=programs_nrc.
Since 1973, the Spina Bifida Association of America, which is located in Washington, D.C., has been the nation’s voluntary health agency dedicated to enhancing the lives of more than 70,000 children and adults who live with spina bifida. Every year, its National Resource Center responds to as many as 10,000 questions about health care, education, employment, and benefits. The Center draws from a variety of publications and resources, including a network of 175 spina bifida clinics and more than 57 local chapters. The Spina Bifida Association of America recently developed a Health Guide for Adults Living with Spina Bifida. This guide provides health information and resources for adults living with spina bifida to help them manage their own health. The guide is intended to promote independence and self-care skills. It may also be used as a resource for talking with another adult about spina bifida. http://www.sbaa.org/site/PageServer?pagename=about_livingadults
Spinal Cord Injury Information Pages
http://www.sci-info-pages.com/.
This site is a free and informative resource for those living with a spinal cord injury or other disabling injuries or diseases of the spine.
United Spinal Association
http://www.unitedspinal.org/
The United Spinal Association was founded in 1946 by veterans with spinal cord injuries to help enable members, as well as others with disabilities, to lead full and productive lives by:
- Ensuring quality health care
- Promoting research
- Advocating for civil rights and independence
- Educating the public and enlisting its help
- Expanding opportunities for all paralyzed Americans
References:
Berkowitz, M., O’Leary, P., Kruse, D., & Harvey, C. (1998). Spinal cord injury: An analysis of medical and social costs. New York: Demos Medical Publishing Inc.
The following abstracts were selected from Social Work Abstracts ™ as examples of the work social workers do with clients who have spinal injury or disease and their families. The studies show how social work researchers use their experience to formulate research studies intended to strengthen the knowledge-base of their practice. Research explores the questions and intervention approaches associated with navigating life stages, emotional adjustment to injury, family adaptation, housing services, personal care, and secondary illnesses associated with prolonged disability. Two of the articles provide an overview of literature and resources, and four are doctoral dissertations.
Living with paraplegia: Tensions and contradictions.
AU: O'Connor-D-L; Young-J-M; Saul-M-J
SO: Health-and-Social-Work. 29(3): 207-218, August 2004.
AB: Paraplegia is caused by an injury to the spinal cord at the thoracic, lumbar, or sacral levels that results in paralysis of the lower extremities. Although it is well established that paraplegia results in dramatic lifestyle changes, little is understood about living in the community with paraplegia, especially from the perspective of the person with paraplegia. To develop insight into this experience, in-depth, personal interviews were conducted with seven individuals with paraplegia who had been living back in the community for less than two years. Qualitative analysis of their transcribed interview suggests that the transitional process revolved around their struggle to reposition themselves in a holistic way that reflects the injury while moving beyond it. Four interrelated challenges textured the experience: maintaining an identity beyond the medical; contending with the stigma of difference; addressing the invisible work of day-to-day living; and balancing independence and dependence. Implications for practice are discussed. (Journal abstract.)
Factors associated with self-worth in young people with physical disabilities.
AU: Antle-B-J
SO: Health-and-Social-Work. 29(3): 167-175, August 2004.
AB: Having a positive sense of self is associated with success for children and adults, with and without disabilities. This article reports on a cross -sectional study examining the correlates of global self-worth for 85 young people (ages 8 to 23) with spina bifida (a condition present at birth) or spinal cord injury (an acquired condition). Significant correlations were found between perceptions of self-worth and age, perceived social support of close friends, and perceived social support from parents. Regression analysis revealed that perceived social support from parents was a stronger predictor of self-worth than gender, age, or diagnosis (onset of disability). Implications of this study for social work practice are discussed. (Journal abstract.)
Aging with a long-term disability: Voices unheard.
AU: Wiley-E-A-M
SO: Physical-and-Occupational-Therapy-in-Geriatrics. 21(3): 33-47, 2003.
AB: Research concerning the emerging population of persons aging with a long -term disability including spinal cord injury and persons surviving polio myelitis and now dealing with post polio syndrome is heavily weighted toward quantitative methods. Results from a search of the literature revealed many articles using quantitative research methods and few articles using qualitative research methods, which include analysis of life stories or narratives, are reviewed . Proposed assumptions are discussed that integrate the body of knowledge elicited from qualitative research. (Journal abstract.)
Spinal cord injury: A biopsychosocial perspective and primer for social workers.
AU: Keleher-C-A; Dixon-D-R; Holliman-D; Vodde-R
SO: Journal-of-Social-Work-in-Disability-and-Rehabilitation. 2(1): 57-77, 2003.
AB: This article provides an overview of spinal cord injury (SCI) that is useful and informative for social workers and other health care professionals who work with this population. Social workers new to the specialty of spinal cord injury must expand their knowledge base of this chronic injury. Social workers contribute to the rehabilitation process through assessment, education, and discharge planning. This article also may be used to inform persons with spinal cord injury and their families and to encourage them to engage in dialogue about SCI in the earliest stages of treatment and rehabilitation. (Journal abstract.)
Superman's crusade: Spinal cord injury resources on the internet.
AU: Hunt-S-E
SO: Health-Care-on-the-Internet. 2(4): 3-20, 1998.
AB: Spinal cord injury is a devastating event, with individuals facing a lifetime of specialized care and rehabilitation. Each year, approximately 10,000 individuals suffer such an injury; there are estimated to be 200,000 spinal-cord-injured individuals in the United States today. Superman actor Christopher Reeve's 1995 injury, along with interesting research being done in this area, has brought this health problem into the public eye in recent years. This article discusses a select list of spinal cord injury resources available on the Internet covering organizations, health care facilities, care and treatment, research, statistics, periodicals, and discussion forums. (Journal abstract.)
Examining health status, quality of life and cost: A comparison of the independent living model vs. the medically supervised model of caregiving for persons with spinal-cord injuries (SCI).
AU: Mattson-Prince-J-D
DA: Brandeis Univ., PhD, May 1994.
AB: Does client-controlled caregiving (independent living) or medically supervised agency care result in better health status, life satisfaction, and lower costs? Telephone interviews were completed with 71 persons whose rehabilitation was at Craig Hospital. Sorted into two cohorts, 29 had agency care and 42 had caregiving through the independent living model. Demographics included age, gender, race, education, time since injury, involvement in productive activities, and marital status. Significantly higher test scores occurred in the independent living model. Cost benefit analysis demonstrated that caregiving was significantly less expensive through independent living. Potential confounding variables were eliminated through multiple regression and Ancova. The model itself resulted in statistically significant variation regarding health status and quality of life. Long-term personal care assistance should be considered a social rather than a health service.
A study of daily living activities of spinal cord injured women.
AU: Inniss-P-G
DA: New York Univ., PhD, September 1994.
AB: The aim of this research was to explore relationships between the social/physical environment of spinal cord injured women and their daily living activities. The sample included 77 records of women obtained from the files of rehabilitation hospitals in the tri-state area. The actual study was conducted over an eight-month period via mailed questionnaires and telephone follow-up interviews. Participants in the study were asked to respond to a set of questions relating to the frequency of specific daily living activities. An overall profile detailing their living and social situation was also obtained. The findings revealed that spinal cord injured women engaged in personal care activities, recreational activities, quiet activities, and housework more frequently than work, education, or rehabilitation activities. Accessible resources did not appear to influence one activity over another, nor account for greater mobility outside of the home.
Sexual adjustment following spinal cord injury: Empirical findings and clinical implications.
AU: Mackelprang-R-W; Hepworth-D-H
SO: Arete. 15(1): 1-13, Summer 1990.
AB: The psychosocial and sexual adjustments of people with spinal cord injuries have long been considered by health care professionals to be intertwined; however, research to substantiate these beliefs is sparse. Reported are the findings of a study (1) comparing pre-injury to post-injury sexual interest and activity, (2) assessing reasons for reduced sexual activity in respondents who reported diminished sexual behavior, and (3) comparing the social and emotional adjustments of those with reduced activity to those of people reporting similar or increased sexual contact. Resultant data documented the critical relationship between psychosocial and sexual adjustment. Practice implications and suggestions are discussed. (Journal abstract, edited.)
Ecological factors in rehabilitation of patients with severe spinal cord injuries.
AU: Mackelprang-R-W; Hepworth-D-H
SO: Social-Work-in-Health-Care. 13(1): 23-38, 1987.
AB: The psychological perspective of disability views the extent of disability as substantially determined by the availability of essential resources in the physical and social environments of people with disabilities. Reported are the findings of a study of the post-hospital adjustment of 81 individuals treated for injuries that produced paraplegia or quadriplegia. Comparisons of emotional and social adjustments were made between groups of respondents contrasted by size of community, independent living versus physical dependence, employment status, and degree of social interaction. Resultant data documented the critical importance of these ecological variables. Practice implications of the findings are discussed. (Journal abstract, edited.)
Social and emotional adjustment following spinal cord injury.
AU: Mackelprang-Romel-W
DA: Utah, DSW, December 1986.
AB: Each year in the United States, approximately 10,000 people suffer acute traumatic spinal cord injuries (SCIs) that render them paraplegic or quadriplegic. Emotional and social adjustment following spinal cord injury varies greatly from person to person, but research that could aid in predicting adjustment is sparse. Eighty-one people, six months to six years post-SCI, were interviewed from March to July 1986 to assess factors leading to positive or negative adjustment. Emotional adjustment was measured using the General Well-Being Schedule, and the Interview Schedule for Social Interaction was used to assess social adjustment. Physical independence and maintained sexual activity seemed to be major factors in positive social and emotional adjustments. People living in small communities were more satisfied socially than those living in cities. Time elapsed since injury could not be used to predict level of adjustment. The most severely injured quadriplegics reported the lowest levels of adjustment; however, paraplegics injured low in the back had poorer levels of adaptation than expected. Emotional and social adjustment were consistently correlated. (Journal abstract.)
Disability and independent living: A study examining the impact of environmental variables on the outcomes of spinal cord injured persons discharged from medical rehabilitation.
AU: DeJong-Gerben
DA: Brandeis, PhD, February 1981.
AB: The movement for independent living has helped to shift the focus in disability policy from individual limitations to physical and social barriers in the environment. The central issue in this study is the extent to which environmental factors as well as personal limitations contribute to disability outcomes. A research model is developed based on an analysis of independent living as a social movement, particularly its indebtedness to allied movements such as civil rights, consumerism, self-help, demedicalization, and deinstitutionalization. The principal data source is a survey of 111 spinal cord injured persons completed in 1975 by the Urban Institute as part of a larger survey of disabled persons discharged from ten medical rehabilitation centers across the nation. Multiple regression analysis was able to explain approximately 65 percent of the variance in three outcome variables: (1) ability to live in a less restrictive environment, (2) ability to live productively, and (3) overall ability to live independently. The most important predictors included marital status, age, education, severity of disability, transportation barriers, work disincentives, and human service programs. Because environmental barriers do have a substantial impact on outcomes, the study suggests that policy interventions carefully targeted to these variables can significantly affect a person's ability to live independently. (Journal abstract.)
The handicapped adolescent.
AU: Sandowski-C-L
SO: School-Social-Work-Journal. 4(1): 3-13, 1979.
AB: Factors that affect the handicapped adolescent include the handicap itself, societal attitudes, behavior of the family, and separation from the family. An understanding of how adolescents may be affected by a handicap is helpful to the professional staff who work with them in the schools. The problems faced by adolescents with cerebral palsy, muscular dystrophy, and spinal-cord injuries are discussed. Cerebral palsy is congenital while the spinal cord injury occurs after a period of relatively normal development. Patients suffering from muscular dystrophy become increasingly dependent and face death at a time when others their age are looking forward to acquiring a greater degree of independence. In schools, social workers may serve less severely handicapped adolescents than those described, but an understanding of the dynamics involved is seen clearly in the more extreme cases. (Journal abstract.)
Family adaptation to the traumatic spinal cord injury of a son or daughter.
AU: Cleveland-M
SO: Social-Work-in-Health-Care. 4(4): 459-71, 1979.
AB: A case history is presented of a family in which an adolescent son suffers a traumatic spinal-cord injury. In addition, an attempt is made to focus on the adaptation of the family members to the permanent disablement of their dependent child. The family's grief reaction is examined, as are their patterns of adaptation in task organization, affection, communication, and power structures. The effect of the injury on specific intra-family relationships is also discussed, and suggestions for clinical intervention are presented. (Journal abstract, edited.)
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