Caregivers: Taking Care of Yourself

Caregivers: Taking Care of Yourself

presented by J. Scott Richards, PhD
at the 1995 Research Update Conference

Caregivers are often the forgotten half of the rehabilitation equation. During initial rehabilitation, the major focus of rehabilitation staffþs time and energy is on the patient. This is increasingly true given shorter and shorter lengths of stay that have been occurring over time.

However, we are well aware that persons who are caregivers bear an important and often a substantial burden both emotionally and physically post-discharge. We know very little about what that process is actually like. How do caregivers cope? What is the relationship between the caregiver's mental and physical health and the long term outcome of person with spinal cord injury?

To answer these questions we have undertaken a long-term research project investigating caregivers of persons with spinal cord injury. This project has been ongoing for several years. We enroll caregivers in this project during initial rehabilitation. We follow them up at one month, six months, and one year post-discharge. At these times we give a variety of questionnaires to examine physical symptoms, emotional concerns, and the presence\absence of family and community support. What we have found so far is that caregivers rate the emotional health of the person with spinal cord injury as improving substantially with the first year of post-discharge. At the same time, however, their own ratings of depression increase. This increase in depression is accompanied by increasing physical complaints (aches and pains, fatigue, etc). There is also a decrease in emotional and instrumental support over time. Instrumental support is help from others, not only with caregiving tasks, but routine housekeeping and day to day living tasks as well.

One participant in our discussion said, "I could have managed the considerable care requirements the first year after discharge best if there had simply been someone or several persons to relieve me of some or most of the routine household chores." This project will be completed within the next two years. We plan to use the information we collect in developing intervention programs for caregivers to facilitate their coping capacity.

c 1994. Board of Trustees of the University of Alabama
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This publication is supported in part by a grant (#H133B80012) from the National Institute on Disability and Rehabilitation Research, Dept of Education, Washington, D.C. 20202. Opinions expressed in this document are not necessarily those of the granting agency.