Quality Of Life While Aging With A Disability
Bryan J. Kemp, Ph.D.
Rancho Los Amigos National Rehabilitation Center
The University of Southern California
This research was partially supported by funding from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (grants No. H133B70011 and H133B980024)
The following is adapted from the source document of the same title. It is distributed for use with permission from the author. Address correspondence or a request for the source document to: Bryan Kemp, Ph.D., RRTC on Aging with a Disability, Rancho Los Amigos National Rehabilitation Center, 7601 East Imperial Highway, Downey, California 90242, (562) 401-7402.
Being able to develop or maintain a positive, or high, quality of life (QOL) after a disability is one of the most important outcomes from rehabilitation. Negative, or low, QOL may also occur, especially when people return to the community. Furthermore, as people with disability age, many experience changes in their health and functioning which challenges their hard-won QOL. This article describes research on QOL among persons who are aging with a disability. Both positive and negative dimensions of QOL were studied. Being able to maintain community activities was significantly related to QOL. Current age and age at onset of disability played a non-significant role on negative QOL but were significantly related to positive QOL. Assistive technology can play a significant role in helping individuals who are aging with a disability to maintain valued activities and experiences.
As a nation, America prides itself on providing a high quality of life
(QOL) for its residents. Most people enjoy reasonable incomes, education,
housing, transportation, health and free time. And with each successive
generation, less time has gone to providing the necessities of life and
more to enjoying the comforts.
QOL is equally important on a personal level. Individuals try to achieve a high quality of life for themselves and for their families. Exactly what constitutes QOL on a personal level varies from person to person. Some persons focus on material possessions, some on achievement and others on a sense of happiness or well-being.
QOL is also an important topic in the field of rehabilitation. In fact, QOL constitutes one of the three major measures of success in rehabilitation, the other two being health and maximum independence. Defining quality of life for persons with disability and then achieving it is a major challenge in rehabilitation.
Furthermore, we now know that health and functioning do not remain constant over the lifetime of a person with a disability. As people with a disability age, they frequently undergo declines in their health and physical functioning. These declines often occur 15-20 years earlier than they do in people without disabilities. Thus, people speak about "premature aging" that goes with having a disability. These changes can have a major impact on peoples lives and will challenge individuals to maintain the level of QOL they achieved over the previous years. This article examines the concept of QOL, proposes a model for understanding high and low QOL, and presents data to support the model.
The Concept of Quality of Life
QOL is difficult to define in rehabilitation because there is no agreement as to whether it should be measured objectively, such as by employment status, marital status or home ownership, or whether it should be measured subjectively, such as by people's own opinions of their lives. One conclusion from prior research is that most investigators and practitioners in rehabilitation adopt an objective view when discussing rehabilitation on a social or political level (e.g., number of persons with disability who are employed or married) and a subjective view on an individual level (QOL is whatever individuals says it is for their lives). Measuring QOL on a personal level therefore relies on methods that capture the person's subjective point of view.
Another issue complicating the understanding of QOL on a personal level is that most people think of QOL only in its positive aspects, such as a high QOL or high life satisfaction. However, QOL can also be negative. Low QOL can be not having what you want, or it could exist in the form of despair, stress or depression if it was very negative.
Flanagan studied QOL in 3,000 person without disabilities in three age groups (30, 50 and 70) using a critical incident technique. He found 15 areas that accounted for the majority of variation in QOL as measured by how well people reported their needs were being met in each area. The 15 areas fell into five factors: Physical and material well-being; relations with other people; social, community and civic activities; personal development and recreation. Overall, he found that 85% of people in all age groups reported that their QOL was good or excellent. In people with disabilities it seems that life dissatisfaction or negative QOL is somewhat more prevalent. Crewe (1980) compared Flanagan's results to a sample of 121 persons with spinal cord injury (SCI) and 66 of their "significant others". She found that persons with SCI were significantly lower in several areas, including employment, finances, sexual relations and health. As many as 35-40% were not satisfied. Kemp and Krause (1999) showed significant group differences between people with SCI, people with polio, and people without disabilities. The latter had consistently higher life satisfaction.
Other research indicates a close relationship between what people with SCI actually accomplished and what they rated as important to QOL. For example, those who worked ranked work as a higher source of QOL than those who didn't work. These data suggest that doing what's of value to a person after a disability relates to QOL, whatever that valued activity is. For most people with disabilities, the valued activities appear to relate to social, productive and pleasurable activities.
The results of most studies also indicate that the presence of a disability negatively impacts QOL. When groups of persons with a disability are compared to groups of persons without a disability, measures of negative QOL are higher. For example, measures of depression are higher in groups of persons with disability than without. However, within groups of persons with a disability, there is very little relationship between QOL and the severity of impairment or the degree of disability. This is an important finding because it indicates that a disability does not cause lower QOL. In addition, many people with a disability have as high a level of QOL as people without disabilities, and often higher.
Research, has shown that QOL is less related to the severity of the
disability than it t is to being able to maintain social participation.
One factor possibly involved in positive QOL is captured by variables that
measure social participation, community activities, and enjoyable activities.
For shorthand's sake, this factor could be called "the ability to maintain
valued activities" and it appears to represent a major contributor to a
positive QOL. " Valued activities" includes whatever is of value to that
individual, but seems to involve pleasurable, successful and meaningful
activities and experiences. Being able to develop and maintain these
experiences is apparently independent of severity of impairment or degree
What about negative QOL? How common is negative QOL? Is negative QOL related to a low frequency of valued activities? If depression is one result of negative or low QOL, the literature yields some important clues. First, on a group basis, depression is two to three times more prevalent in persons with disability compared to people without disabilities. The prevalence of depressive disorders in studies of persons with disability ranges from about 25% to about 40% compared to about 8-11% in nondisabled groups. Are people with disabilities who report depression the same ones who report lower QOL than their disabled and nondisabled peers? This is the first question we will attempt to answer with this research.
Research finds an absence of a relationship between the severity of impairment or the degree of disability and the presence of depression. This lack of a relationship between depression and severity mirrors the non-relationship between severity and QOL. Is it possible, then, that depression, like QOL is related to participation in valued activities? That is the second question we will attempt to answer.
The purposes of this study were: to examine the relationships between 1) both positive, or high, QOL and negative, or low, QOL, and community activities, 2) the relationships between QOL, depression and life satisfaction, and 3) the relationship of these factors to age in a group of persons aging with a disability.
One hundred ten (110) persons aging with a variety of impairments (post-polio, SCI, cerebral palsy, stroke, etc.) were included. Their average age was 67 (range=24-94) and their average age at onset was 24 years (range=0-77). There were 38 males and 72 females. Their average education was 14.5 years.
As part of the larger study, participants completed a psychological interview and filled out several measures (see below). Only a portion of those results are included here.
Four measures are reported on in this study. A subjective Quality of Life (QOL) scale was constructed for the study. This entailed a 7-point scale which individuals marked with an "x"with descriptive terms describing the low end ("Very distressing; hard to imagine how life could get much worse"), high end ("Life is great; hard to imagine how it could get much better") and the midpoint ("Life is so-so; neither good nor bad"). Participants were told to "consider everything in your life right now, how would you rate your overall quality of life". They then placed a mark in one of the boxes along the seven point scale. Secondly, an 11-item Life Satisfaction was used. This scale has the person rate various parts of life (e.g., friendships, health, health care, finances, primary relationship) on a 4-point scale with 1 being "mostly dissatisfied" and 4 being "mostly satisfied". A depression measure, The Older Adult Health and Mood Questionnaire was used. This 22-item, clinically-validated scale assesses depression in persons with disability well by using only a few physiological symptoms of depression such as fatigue, pain or difficulty performing activities. The fourth measure was a 16-item Community Activities checklist constructed for the project. The scale asked participants to indicate the number of times during the last seven days that he or she did certain activities. These activities were primarily social, interpersonal, community, pleasurable and recreational activities such as "Went to a show, dinner or other outing", "Had a romantic experience with someone", "Dressed my best", "Bought myself something I wanted" and "Visited with friends".
QOL scores correlated highly and negatively with depression, and highly with life satisfaction , and community activities but did not correlate with the demographic variables of age, age at onset or education. Depression scores were negatively correlated with life satisfaction scores and community activities. Life satisfaction was positively correlated with community activities and with age even though depression was unrelated to age.
In this study, participants were able to make subjective judgements
about the quality of their lives. They were also able to make distinctions
between negative, or low QOL and positive, or high, QOL. Positive
QOL was highly related to a measure of life satisfaction and negative QOL
was highly related to a measure of depression. Thus, there is evidence
for the idea of considering that QOL has both positive and negative dimensions.
Llife satisfaction scores increased across the different levels of QOL.
The average life satisfaction score was 2.5 for the low QOL group.
This is equivalent to a "somewhat dissatisfied" score on the life satisfaction
scale. On the other hand, the average score for the high QOL group
was 3.5, which is equivalent to "mostly satisfied".
What are the implications of these findings for the role of assistive technology? One way to assess the need for assistive technology in relation to QOL is to review with the participant exactly what kind of community activities have provided pleasure, success and meaning in their lives. This is a departure from assessing needs for assistive technology by examining Activities of Daily Living (such as bathing, transfers and dressing), Instrumental Activities of Daily Living (such as chores, shopping and meal preparation) and work issues. Instead, a focus could be given directly to the activities that promote QOL. Another implication is that QOL should be used as a measure of success in assessing the impact of any assistive technology interventions. Does assistive technology really improve the quality of life of persons with disability?
Finally, considering the relation between QOL and community activities, assistive technology should be used to increase these activities. In addition to assistive technology, other solutions may help preserve QOL. These include increased social support, doing valued activities other ways or developing new community activities.
In conclusion, QOL is an important outcome in rehabilitation, an outcome that can be either positive or negative. Maintaining valued community activities is important to QOL and assistive technology can assist in that effort.
References (many more in Source Document)
Crewe, N. M. (1980). Quality of life: The ultimate goal in rehabilitation. Minnesota Medicine, August, 586-589.
Flanagan, J. C. (1978). A research approach to improving our quality of life. Am. Psychol. 33, (2): 138.
Kemp, B. J., & Krause, J. S. (1999). Depression and life satisfaction among persons aging with post-polio and spinal cord injury. Disability and Rehabilitation, 21, (5/6): 241-249.
Adaptation by: June Isaacson Kailes, Dissemination Specialist
Rehabilitation Research and Training Center on Aging and Spinal Cord
Injury Rancho Los Amigos Medical Center
Return to Health, Wellness and Aging with Disability
© 1998-2001 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
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