By Lynette Ballard, MSW, LCSW, Sara Klaas, MSW, C-ASWCM, and Bernie Quell, MS, CRC, LPC
|Introduction||SCI and Sexuality|
|Dealing With the Diagnosis||What Social Workers Do to Help|
|Family Implications||Resources for Persons with SCI|
|Phases of Adjustment||Journals|
There are an estimated 11,000 new cases of spinal cord injury (SCI) in the United States per year. Over the last several years, SCI has primarily affected persons aged 16 – 30, 78 percent of whom are males; and predominately Caucasian (78 percent).
Almost half of the spinal injuries occur as a result of motor vehicle injury, second are falls, and the remainder come from acts of violence such as gun shot wounds or knife injuries as well as war related injury.
SCI is defined as, damage or trauma to the spinal cord that results in loss of sensory and motor function. An SCI can result in either a “complete injury” (a loss of all voluntary movement) or an “incomplete injury” (a partial loss of voluntary movement).
An SCI is classified utilizing a scale developed by the American Spinal Injury Association (ASIA) that uses a system to describe the level of injury. For example, a person with an ASIA A complete injury describes a person who has no voluntary movement or sensation below the level of injury.
Spinal cord injury (SCI) is a devastating event that not only has physical but social and psychological ramifications for both the individual and the family. In one moment, a person’s world is monumentally changed forever with reverberations throughout the whole family system. The person who sustains an SCI is at high risk for many factors including: dependency, depression, drug addiction and, if married, divorce. They can also struggle with debilitating secondary medical complications and other factors such as the effects of perceived social discrimination, declining help and lack of social, family, and emotional support.
When something traumatic happens to one family member, the whole family feels the effects. Roles and responsibilities change. Marital strain occurs when one partner has to take on unfamiliar roles such as providing assistance with activities of daily living, financial responsibility and intimacy changes. This can put the person without the disability at high risk for depression.
Parents who have a young adult child that has an SCI will often reestablish the role or responsibility of parenting. If the person has left home, this may mean moving back in. This can affect self-esteem of the person with SCI and cause conflict with parents.
Interpersonal relationships are affected as well. Friends who may have had previous interests or activities they enjoyed doing together are now different. The person with SCI may withdraw or may feel embarrassed being seen post-injury. While having a young child sustain a spinal cord injury, brings a new dynamic to the entire family system and numerous challenges to the child who must face an SCI during times of dynamic growth and development.
When a person, and by association, a family, experiences a traumatic event, they will experience a series of emotions or phases. These phases are used as a guideline to understanding this overwhelming emotional process. It is important to note that the person with SCI may be in one phase and the family in a different phase during the same period of time. It is critical to keep lines of communication open and to allow everyone to experience this process at their own pace.
The first stage is a general sense of denial or disbelief stage. This process is a built-in defense mechanism to help us cope with extremely stressful situations. It is a normal process and is usually helped by getting more information. This first step on the road to adjustment is characterized by absorbing information, learning new tasks for care, and understanding what is lost and what is left.
The next phase is usually characterized by more emotional responses such as guilt, anger, and depression. Someone may experience feelings of anger or may displace the anger they feel about the injury onto someone else. A person with an injury may feel guilty, especially if careless or reckless behavior was the cause of the injury. They may also now perceive themselves as a burden to the family. Depression is associated with the losses endured by everyone going through this experience. Whatever the emotion, a person with a SCI or family member should be supported and validated. If symptoms become severe, professional counseling is appropriate and recommended.
This phase can be short or last a lifetime. Generally, during this phase the injured person becomes more familiar with living with an SCI. They may gain independence at a wheelchair level with regard to self-care or may adjust to having a caregiver. During this phase, one generally returns to activities they were doing before an injury such as: socializing, driving, employment/volunteering, and adaptive recreation.
Research has shown that social support is related to a positive outcome following an injury or illness. Support systems are very important in helping a person to adapt, adjust, and cope with an SCI. Support can come from a variety of areas. During the initial phase the primary support from friends and family help with providing encouragement and hope. Secondary support systems consist of health care professionals, i.e. doctors, nurses, physical and occupational therapists, and social workers who provide instruction, training and a safe environment for adjustment. Spiritual support can also be a source of comfort and peace for the person with an SCI and the family.
Apprehension about sexual functioning and reproduction is common after an SCI. Education and counseling are very important in understanding an adaptive response to sexual functioning. Sperm harvesting, artificial insemination, and in-vitro fertilization have offered couples hope in achieving pregnancy. SCI does not have to be the end of having sexual relations or conceiving a child.
Intervention during the initial crisis
- Provide short term or crisis intervention at the beginning of the process.
- Act as a liaison between the medical team and the family providing valuable information to both sides.
- Address immediate questions and concerns and provide updates on the person’s status.
- Help reduce anxiety by providing information and allowing the family to vent feelings and concerns.
- Provide empathy, listen, and normalize feelings.
Longer-term interventions for the person with SCI
- Provide counseling to help increase self-esteem, self-worth, and self-efficacy that build a sense of empowerment for the person to resume decision-making and control of their life.
- Provide cognitive behavioral therapy that can help a person restructure their thoughts and behaviors in order to cope more effectively and live a more satisfactory life.
Assisting the family and person with SCI
- Social workers can identify resources and referrals to agencies that can help with a variety of concerns i.e. making adaptations to a home, financial assistance, vocational rehab, transportation, and support programs.
- Provide continual counseling throughout the process of adjustment to address anxiety, re-entry into social/work environments, and relationship/caregiver issues.
- Advocate for legislation to assist in providing more services for this population.
The following are various sites that provide information and resources for the individual with SCI and his/her family.
- http://www.unitedspinal.org: Expert advice on negotiating with federal and state programs. Full service travel agency. Adaptive equipment evaluations. Advocacy on civil rights issues. Access to wide range of adaptive recreational opportunities. Membership is free and includes a monthly member magazine, Action, which offers up-to-date information.
Computer software to capture information on SCI
Help after discharge. Web site for people with spinal cord injuries.
Care Cure Community. Several links to various topics related to SCI. Rutgers University.
Info from: The National Institute on Disability and Rehabilitation Research
Data on SCI
Information on SCI re-evaluation and resources of Craig Hospital.
Info related to pediatrics and SCI
Overview of the Rehabilitation team and the discharge process.
Information from the University of Michigan. Links to other sites.
Lists the SCI Model Centers with several links to these centers.
National Spinal Cord Injury Association Site
Commission on Accreditation of Rehabilitation Facilities
Arkansas Spinal Cord Commission
Link to Choices Manual. SCI, from admission to discharge and beyond.
The following is a list of journals in which articles relevant to SCI can be found:
- Archives of Physical Medicine and Rehabilitation
The Archives of Physical Medicine and Rehabilitation is the official journal of the American Congress of Rehabilitation Medicine
- Critical Reviews in Physical and Rehabilitation Medicine
Critical Reviews in Physical and Rehabilitation Medicine is devoted to healing technologies other than those based on altering body chemistry (drugs) or integrity (surgery). The journal provides reviews of well-established diagnostic methods, clinical modalities, and techniques, and physical and rehabilitative methodologies for specific etiologies amenable to treatment by physical medicine. The journal appears quarterly, and includes from one to four articles that summarize and evaluate the current status of an important topic. Topics and authors are chosen by members of our distinguished Editorial Board, all of whom are leading practitioners, researchers, and active contributors to the literature in their area of expertise. The focus of the journal is directed at making available assessments of subjects that comprise the advancing frontiers of the field. http://www.begellhouse.com/journals/757fcb0219d89390.html
- Disability and Rehabilitation
Disability and Rehabilitation is the official journal of the International Society of Physical and Rehabilitation Medicine (ISPRM). It is an international, multidisciplinary journal which seeks to encourage a better understanding of all aspects of disability, and to promote the rehabilitation process. The journal publishes articles on rehabilitation in practice and rehabilitation engineering, spanning a range of issues including the severity and magnitude of disability, clinical medicine including gerontology, psychosocial adjustment, social policy issues, vocational and educational training, and rehabilitation engineering.
- Disability & Society
Disability & Society is an international journal providing a focus for debate about such issues as human rights, discrimination, definitions, policy and practices. It appears against a background of change in the ways in which disability is viewed and responded to.
- International Journal of Rehabilitation
International Journal of Therapy and Rehabilitation (IJTR) is the leading interdisciplinary review journal for physiotherapists, occupational therapists, speech and language therapists and all other allied health professionals working in therapy and rehabilitation.
- Journal of Spinal Cord Medicine
The journal is the official publication of the American Paraplegia Society (APS). It boasts a distinguished history whose contributors include worldwide leaders in the field of spinal cord medicine. The science of spinal cord medicine is advanced through coverage of basic science, translational research, clinical studies and expert commentary. The journal invites contributions representing original research, reviews, clinical notes, case reports, editorials, technical perspectives, and letters to the Editor.
- Spinal Cord
Spinal Cord is the official journal of the International Spinal Cord Society. It provides complete coverage of all aspects of spinal injury and disease.
- Rehabilitation Psychology
Rehabilitation Psychology is the official publication of Division 22 of the American Psychological Association.
- SCI Psychosocial Process
SCI Psychosocial Process is the official publication of the American Association of Spinal Cord Injury Psychologists and Social Workers.
- Sexuality and Disability
A journal devoted to the psychological and medical aspects of sexuality in rehabilitation and community settings.
- Topics in Spinal Cord Injury Rehabilitation
Topics in Spinal Cord Injury Rehabilitation reviews and reports on clinical practices, state-of-the-art concepts, and new developments in spinal cord injury patient care and research. Both primary research papers and comprehensive reviews of existing literature are included.
Lynette Ballard earned a master’s degree in Social Work from the University of Southern California. She has a bachelor’s degree in Sociology from the University of Utah. She is a licensed clinical social worker. She is also a certified bereavement counselor. Ms. Ballard is currently working in the University of Utah Hospital Rehabilitation Center and is designated as the Spinal Cord Injury (SCI) Social Worker for the hospital. In addition to working specifically with the spinal cord injury population she also works with those who have strokes, traumatic brain injury and other neurological disorders.
Sara Klaas is currently the Director of the Spinal Cord Injury Service at Shriners Hospital for Children in Chicago. Sara has been at Shriners Hospital for the last 19 years in a variety of capacities. She has served as the inpatient social worker for the infant/toddler and school-age units, the adolescent unit social worker, the Assistant Director of Family Services, and most recently as the Director of Care Coordination. In addition to these roles, Ms. Ballard has been the Spinal Cord Injury (SCI) team leader for more than 15 years. She received a bachelor’s degree in psychology and social work from Mundelein College and her master’s degree in social work from the University of Illinois at Chicago, Jane Addams College of Social Work.
Bernie Quell is Program Manager for the EmployAbility Project, a special grant program of the Division of Aging and Adult Services within the Department of Human Services. He is a graduate of the University of Arkansas with a Masters Degree in Rehabilitation Counseling. He is a Certified Rehabilitation Counselor (CRC) and a Licensed Professional Counselor (LPC). His background includes providing direct vocational service and community integration to individuals with traumatic brain injury, chronic mental health issues, and spinal cord injury. He has served as the Educational Director of a Central Arkansas Hospice program and has experience as an Adjunct Professor for the University of Arkansas.