The American system of health care is by and large driven by government and insurance reimbursement policies. They favor illness and problem-focused care. Training in and concern for psychosocial factors that affect health are limited, and in some instances, disregarded as unimportant.
However, more and more attention is being paid to the significance of maintaining and restoring a positive quality of life for individuals suffering from disease and/or disability. This is true not only in long-term settings but also during the acute phase of a health crisis. There is mounting evidence that psychosocial factors may have more to do with ultimate outcome than the level of physical independence and functioning after a stroke or disabling diagnosis.
The term quality of life, or QOL as it is commonly referred to in scientific literature, is complex and encompasses several dimensions of life. The factors previously discussed, social support, family support, the individual's experience of disease and disability, hope, happiness etc. contribute to QOL. All aspects of physical, functional, psychological and social health contribute to any given person’s QOL. What matters is how all of the contributing factors are perceived by the individual experiencing them.
In the Center’s model, QOL factors become the center of attention for all activities and interactions. The warm and friendly environment and the influence of peer support assist those whose inclination is to perceive their lives negatively to move toward more positive perceptions.
In order to better understand quality of life factors at the Center and to prepare for the possibility of eventual scientifically grounded research, Caroline Bliss-Isberg took a one semester sabbatical leave in 1998 to develop a method of measuring the impact on quality of life that students experienced at the Center.
After reviewing the literature on measurement, it became obvious that almost all of the well-validated and reliable measures, that were consistently used in measuring rehabilitation outcomes, were too low level and restricted to be used to measure QOL outcomes at the Center. Most focused on restoration of very basic ADLs (activities of daily living), mobility and simple communication. Inferences about QOL were based on functional outcomes even though research has found that QOL outcomes cannot be predicted from functional status.
Contacts at Stanford University were extremely helpful in directing her to more appropriate measures. Dr. Kate Lorig, who had done some early research over a decade ago at the Center, was acutely aware of the constraints that language disability and decreased attention span placed on evaluation and measurement. With the assistance of Dr. Lorig and of Dr. Janine Giese-Davis, 12 measures having scientifically acceptable validity and reliability were chosen. These met the following criteria:
- they are relatively brief,
- they have similar scoring patterns,
- they are simply worded,
- they require minimal reading,
- they can be administered in less than 1/2 hour.
The measures have been pre-tested by several different examiners on a variety of students with different patterns of impairment. Most students have been able to comprehend and respond appropriately to individual test items. The outcomes that are measured appear to be congruent with expectations and appear to accurately reflect QOL factors.
It is hoped that an enthusiastic graduate student or researcher will take advantage of this preliminary work and conduct quality of life research at the Center to test the efficacy of the model. The sabbatical report is available from the Cabrillo College library and the test battery obtained by contacting the Center.
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