SPINAL CORD INJURY: The Impact on patient, family and the society

Spinal cord injury (SCI) is a complex and life-changing disease. Spinal cord injury encompasses damage to the spinal cord from traumatic or nontraumatic causes. Spinal cord injury includes a whole spectrum from a child born with spina bifida to an old person who develops SCI as a result of osteoporosis or a tumor. Spinal cord injury may happen to a construction worker who falls from scaffolding and to a victim of conflict or gun violence.

Spinal cord injury has significant medical/physical consequences, leaving the individual paralyzed below the level of the injury (tetraplegic or paraplegic). Acute management is very challenging, posing significant risk to life. It involves appropriate prehospital care (evacuation from site of accident, first aid at site, and transfer to medical facility) and subsequently on reaching the hospital, an appropriate emergency management, comprehensive evaluation, conservative/surgical management of vertebral fracture, and prevention as well as management of complications. Once the fracture is stabilized, relevant acute and post-acute medical care, and rehabilitation services must be accessible to ensure maximal function so that the individual can be as independent as possible. Different models of service delivery are available, but centers specialized in SCI management have been shown to reduce costs and result in fewer complications with lower re-hospitalization rate in comparison to non-specialized centers.

The highest priority for a person with SCI is to achieve a good control of bladder and bowel function to prevent any social embarrassment. Regular physiotherapy and occupational therapy can help to maximize function in lower and upper limbs respectively. Following the defined guidelines, techniques for achieving independence in everyday activities can be taught to a person with SCI depending on his/her neurological level. The level of independence a person with SCI achieves may change with time depending on motor recovery in cases of incomplete SCIs. Even a single root recovery can contribute significantly to make a tetraplegic patient independent in activities of daily living, with a proper guidance.

A multidisciplinary approach is needed for managing a person with SCI. Other than the doctor, nurse, physiotherapist, and occupational therapist, various other team members are involved in SCI management. A psychologist and mental health services team, including peer counselors specialized in dealing with people with SCI, can help to deal with the depression and other psychological trauma due to the disease and disability. Depression is known to decrease the expected recovery of function and leads to an increase in complication rate after discharge from the proper care. An urologist, or a sexual counselor, or paramedical personnel should be involved with a person with SCI to resolve all the doubts related to sexual and reproductive ability of the individual. A proper therapeutic management with a good counseling can help people with SCI to sustain their personal relationship with their partners and have a family. An assistive technology (AT) specialist is a vital component of the team because majority of people with SCI would require some form of wheelchair which could be tailor-made for the patient as per his/her needs, living place, and neurological level. The AT specialist would help the family of a spinal cord injured person to modify the home and its surroundings so that they could access all the possible things in the home so that they may feel independent. A social services team would help the individual know their rights as an employee and an individual and help them return back to education and employment. All these measures can ensure that children and adults with SCI can return to study, be independent, make an economic participation, and contribute to family and community.

Despite the increasing incidence of rehabilitation facilities available across the globe, there is paucity of specialized centers for making people with SCI as independent as possible. The awareness for their inclusion into the society and vocation is lacking among individual, families, and even the professionals managing these injuries at non-specialized centers. There is a dearth of trained personnel, modified equipments, and assistive devices in majority of places in less developed nations like ours. The scenario is even worse in smaller towns and villages. There are minimal facilities for the people with disability with modified or partial independence to be able to use public transport or recreational facilities in cities like ours. Even majority of the nursing homes across the city lacks the infrastructure for a person with SCI to be independent in the hospital area.

Spinal cord injury has a life-disturbing impact on physical, mental, and social behavior of a person. The impact is not only limited to the individual but also affects the family and the society as well. The incidence for the mental disorders is very high reaching up to 20 to 25% for an anxiety disorder and 30 to 40% for a depressive disorder. Post-traumatic stress disorder is very common after SCI and the incidence ranges from 10 to 40% in the literature. Spinal cord injury affects the psychology of the patient to an extent that they have sleep disturbances like restless sleep, difficulty in initiating and maintaining sleep, snoring, often awaking in the early hours of the morning.

Spinal cord injury affects the whole family. Family members may feel as frightened, worried, and overwhelmed as the patient. It takes a few months or a year or two before everybody in the family adapts and adjusts to the drastic changes in roles, responsibilities, finances, and priorities. The near and dear of the people with SCI are the ones providing personal care for the individual with a disability, especially in our nation where majority of the people would not afford a specialized caregiver. However, whenever possible, it is desirable to have a trained person for most of the care of the individual, depending on the disability and independence of the individual.

Various misconceptions about the SCI and negative attitudes of the unaware society and individual lead to exclusion of many people from full participation in society. From a child with SCI who has a less likelihood of starting school than his peers and less likely to advance after enrollment to an adult who will get a lesser priority than his peers for employment, people with SCI face a social outcast at all ages. Spinal cord injury can have a negative impact on personal relationships and is associated with a higher rate of divorce. The partner tends to get frustrated with the relationship over a period of time, especially if he/she is playing the role of a caregiver too. Spinal cord injury affects both genital and sexual functioning. Forty-two percent of males with SCI are not satisfied with their sex lives.Thirty-four percent of SCI patients are not satisfied with their partner relationships. Caregivers of children and young people with spina bifida or traumatic SCI experience isolation and stress. This leads to burn out of their love for the individual with SCI in many cases, which may explain separation of many couples after the injury.

People with SCI are potentially at risk for recurrent urinary tract infections, pressure sores, deep vein thrombosis, osteoporosis, chest infections, and sepsis. These complications can be prevented by spreading awareness among individuals and the caregivers. Despite taking all the precautions, there is a narrow margin for error for these patients. The constant risk of a complication leads to insecurity among these patients and a disturbed mental state. The recurrent problems and a regular checkup to prevent any complication lead to a higher cost for the treatment.

There is a need for special awareness programs to spread the message among masses that “A person with SCI who has access to health care, personal assistance if required, and assistive devices should be able to return to study, live independently, make an economic contribution, and participate in family and community life.” Spinal cord injury is both a public health and human rights challenge. With the availability and implementation of the right policies, a person with SCI can live, thrive, and contribute to the family and community, fairly independently. People with SCI are people with disabilities, and they are entitled to the same human rights and respect as all other people with disabilities.

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Designed By Rashiv Batra