Rehabilitation
Research and Training Center onAging with a Disability
Research Report
Maintaining Quality Of Life While Living With Polio
Bryan Kemp, Ph.D.
Director, Rehabilitation Research and Training Center on Aging with a
Disability
The term Quality of Life (QOL) refers to a person's judgement about the positiveness or negativeness of his or her overall life experiences. Some persons may emphasize material possessions as the main contributor to QOL while others may emphasize the nature of their personal relations, career or spiritual growth. Regardless of emphasis, a positive and high QOL is what most people strive for, whether or not they have a disability. This article reports on research in progress on the topic of QOL while aging with a condition such as polio. Evidence indicates that most persons with a history of polio have achieved a fairly high QOL during their lives. However, it is also now widely known that many persons with a history of polio and other disabling conditions are at high risk of developing substantial changes in their health, functioning and daily activities by the age of 50 and that these changes can have an impact on QOL. For example, cardiovascular or respiratory disease or functional problems such as pain, fatigue and weakness may lead to loss of employment, leisure activities and social interaction which then affects QOL.
What Research Shows
Investigations at this Research and Training Center and at other Centers have revealed several important facts about quality of life.
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Overall quality of life can be assessed in a relatively simple way that is both reliable (consistent) and valid (accurate). The next section gives you, the reader, a chance to rate your own QOL.
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QOL can be either positive or it can be negative, or it can be somewhere in between.
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Separate factors may account for positive/high QOL versus negative/low QOL. Our research has revealed some of the factors that contribute to a high QOL; but the absence of those factors may not be the only thing that contributes to low QOL (see below).
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QOL is not highly related to a person's severity of disability, duration of disability, current age or even income.
Rate Your Own QOL
Each person's QOL is individualized. It is dependent on your view of your life and what is important to you. In our research, we ask people to rate their QOL using the scale below. Please take a few minutes and rate your own QOL using the instructions provided. Following that, I'll interpret what your score means and what else we're finding out about QOL.
Instructions: Place an X where you rate your current QOL, taking everything in your life into account. A rating of 7 means "Life is great; it's hard to imagine how it could get much better". A rating of 1 means "Life is very distressing; it's hard to imagine how it could get much worse". A rating of 4 means "Life is so-so, neither good nor bad". Now, put an X where you rate yourself. You may use half-points, like 4.5 or 5.5, if you want.
Very |
So-So |
Great! |
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1 |
2 |
3 |
4 |
5 |
6 |
7 |
Interpretation
Ratings of 1 and 2 are very low, 3 and 4 are low. Ratings of 4.5 to 5.5 are medium, and scores from 6 to 7 are high. About 25% of people with a disability score high, about 50% score medium and about 25% score low or very low. Persons without a disability score slightly higher. Our research shows that a key factor in maintaining a high QOL is having a sufficient number of experiences in life that provide pleasure, success or meaning. If a person gets enough of these experiences, regardless of whether they come from work, family, religion or leisure activities, then QOL is high. On the other hand, persons who score low on QOL not only have fewer experiences of a pleasurable, successful and meaningful nature but in addition are often struggling to cope with other issues, such as health or family problems.
High Scores Scores of 6 or 7 are obtained by persons who are experiencing high amounts of pleasurable, successful and meaningful activities in their lives. On average, these persons engage in at least 40 such activities per week. This may be despite a significant disability.
Medium Scores These scores range from 4.5 to 5.5. These persons are moderately happy but may not be as fulfilled as they could be. While their potential is high, they may feel a sense of boredom, lack of fulfillment or loss of direction. These persons are doing about 30 activities per week that bring pleasure, achievement or meaning.
Low Scores Rather than having high amounts of pleasurable, successful and meaningful experiences in life, you may be experiencing the opposite: physical and emotional pain, little sense of accomplishment, perhaps not feeling important enough, or a lack of meaningful relationships in life. Scores that are very low (2 or 1) indicate that you are probably also having difficulty coping with some aspects of life, either long-standing issues or recent changes and you may be experiencing high levels of distress, anxiety or depression. Depression can become a problem which further compounds your low QOL.
What To Do
If you scored high, keep doing what you're doing! If possible, look ahead 5 to 10 years and think about how you'll preserve your most important activities if your disability worsens or you begin to slow down.
If you scored in the medium range, you should examine what category of activities (pleasurable, successful or meaningful) is holding you back. Lack of pleasure means you may be lacking enough fun. Lack of success may mean you're not accomplishing your goals. Lack of enough meaning may indicate that some of your relationships are not providing you with what you need psychologically or that you are missing a spiritual component to your life. You should examine how to improve those.
A low QOL means you may need professional consultation to help you discover and use better ways of coping. Remember, QOL doesn't depend upon your disability. At any level of disability, QOL can, and should be, high.
Reprinted
from the Rancho Los Amigos Post-Polio Support Group Newsletter, May 2000.
Rehabilitation
Research and Training Center on Aging with a Disability
Rancho Los Amigos National Rehabilitation Center
7601 E. Imperial Hwy, Building 800-W
Downey, California 90242; (voice) 562-401-7402; (fax) 562-401-7011
webmaster: chuck.sanders@agingwithdisability.org
last updated 7/14/2008
