In the field of the psychology of living with a spinal cord injury (SCI), the existing literature deals largely with the adjustment of adults; the focus on children and young adults with SCI is a relatively new phenomenon. One brief column, of course, cannot redress this imbalance, but I can at least summarize the basics of psychosocial issues in pediatric SCI.
The psychological challenges children face are different from those seen in adults with similar injuries. Children will respond to their injury according to their developmental stage at the time, and this response will continue to change as the child grows.
A major factor to consider in any child’s mental health is the influence of the family members on the child’s adjustment process and vice-versa. In order to provide adequate emotional support, it is essential to pay attention to the unique and different challenges faced by each individual family member in addition to the ones the family faces as a whole.
The parents or caregivers of a child with SCI are often traumatized. They can experience feelings of anger, sadness, guilt, and so forth. They must learn a great deal of medical information about how to care for their child, while simultaneously providing emotional support. It is often the case that the caregivers have a difficult time parenting their child in the same way as before the injury. Overprotection and fewer limits or less discipline are frequent responses to the new situation.
During the initial hospital stay and on an ongoing basis, the parent/caregiver must constantly ensure that the appropriate and necessary modifications are made at home, at school, and at any other location to where the child travels. In addition, the caregiver will likely face financial challenges secondary to possible employment changes and extensive medical, equipment, and therapy bills. Finally, after the initial learning and adjustment process has been conquered, the parents/caregivers need to support their child in creating future life goals and a plan to meet those goals. Even though it is common for parents/caregivers to have difficulty letting go of their child as she or he grows up, that transition can be even more challenging when the child has a disability.
Children with SCI also experience unique challenges that can change depending on their age. When the child is injured at birth or in early childhood, he or she relies largely on the parents or caregivers for total support. At school age, the child is developing their sense of identity and can feel anxious or sad as a result of their physical limitations and having a perceived lack of control over their environment. The child is also learning how to socialize with peers. During adolescence, body image, sexuality, driving, and peer relationships become central issues. Emotions run high during this developmental stage in general and the teen with SCI is no exception. It is the job of adolescents to learn to separate from their parents/caregivers and to take on increased responsibility for their own medical care.
The transition to adulthood (including medical, social, emotional, financial, educational, vocational, and leisure aspects) is a process through which the young adult must navigate with support from her/his parents/caregivers and medical team.
The whole family of a child with SCI will likely go through some changes. It is important to take into consideration the way the family was functioning before the injury occurred, as this will affect their functioning afterward. There may be a shift in the family dynamics, including marital, sibling, and parental relationships, as a result of this SCI. The increased amount of time it takes to care for a child with SCI takes away from leisure time. This decrease in “play time” occurs for the child, the siblings, and the parents/caregivers.
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The overall goal in pediatric SCI is to return the child and the family as quickly and fully as possible back to their lives in their own communities with the appropriate support services in place. The child should be reintegrated back into school, social activities, sports, and chores or jobs as soon as medically possible. It is also important to monitor the child as they grow to ensure that they’re keeping up with peers over time.
Heather Russell, PhD is the Clinical Psychologist at the Shriners Hospital for Children in Philadelphia, Pennsylvania.
