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TAKING CARE OF PEOPLE WITH SPINAL CORD INJURY: FOCUS ON THE FAMILY

The needs and feelings of family members are often overlooked in the literature on adjustment to spinal cord injury and in the clinical practice of rehabilitation. Families report that they often feel "out of the loop" of information and decision-making, with many of their questions and concerns unanswered. This is partly because, in the early stages of hospitalization and rehabilitation, doctors, nurses, technicians, and other medical staff members must concentrate primarily on sustaining the life, limiting the extent of the injury, and maximizing the remaining physical abilities of the patient. Thus medical care providers have little time for the concerns of the patient's family. Family members may also feel alienated because they are unsure what questions to ask or what rights they have within the medical system. And, emotionally overwhelmed, they often can't put their thoughts and feelings into words.
Think what happens when the media do a story on spinal cord injury. Newspaper headlines spotlight the injured person. Feature stories describe the heroism and fortitude of someone surviving with a spinal cord injury. Television specials feature famous people, such as the actor Christopher Reeve, who have sustained spinal cord injuries. The focus is almost exclusively on the person who has been injured.
The media stories make it seem as if the injured persons deal with their disability in a vacuum - as if a stone dropped into a pond has no effect on the surrounding body of water. Yet we know there is a ripple effect and that family members also go through emotional upheavals and adjustments in coming to terms with spinal cord injury. The trauma enters their lives too. They, like the injured person, enter a new world, unprepared for their new roles and the new demands on their energies and resources. This strange world of medical care and rehabilitation runs on different time schedules, speaks a different language, and offers little understanding or education for family members.
Experiences differ for each family member, of course. Parents must deal with the emotions that arise whenever their child is hurt. For brothers and sisters, already existing emotional issues or conflicts with their sibling may be complicated by the trauma. When a parent is injured, children must deal with a heightened sense of vulnerability and a loss of trust. And the spinal cord injury of a husband or wife or other intimate companion raises issues of sexuality and interdependence.
While everyone in the family experiences the various stages of grief, these stages seldom occur at the same time for each family member. For instance, the injured person may be deep into depression, while Mom is still in denial, Dad is angry, and younger sister still believes her sibling will be "healed." These differences add to the challenge of coordinating care. And they make communication both more difficult and more important. Supporting each other and acknowledging feelings will help clarify where each family member is on the emotional roller coaster.
We present here the stories of various family members - mother, wife, sibling, and other relatives - of persons with spinal cord injury, all of whom have struggled to come to terms with the injury and its aftermath. We discuss some ways in which families can reduce the impact of spinal cord injury on family functioning and improve communication and mutual support. We suggest ways to connect with other families and professionals who can help you cope with the emotional turmoil, physical exhaustion, and financial hardship that may follow a family member's spinal cord injury.

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