Quality of Life: What's Important
Researchers have much data showing that people with spinal cord injuries have a high quality of life. Many people are surprised by this. "How can spinal cord injury survivors have all the problems they do with their health, their finances, their mobility and independence, and with getting jobs and personal care assistants, and still claim that they are happy and their quality of life is good?" they ask. "How can everything seem so good when compared to others, things are so bad?" A contradiction Their question is a good one. The contradiction they point out is real. Three things add up to make this contradiction: Researchers think they know what contributes to people’s quality of life and life satisfaction – things like good health; challenging jobs; financial security and material comforts; control over their lives; romantic relationships, happy marriages, and even just satisfying relationships with others. Researchers tell us these are things that SCI survivors often do not have or are not satisfied with, compared with nondisabled people. At the same time, SCI survivors, as a group, tell researchers that they're happy and their quality of life is good. In fact, in one study, SCI survivors rated their quality of life higher than a similar group of non-disabled people! How can this be? New research with spinal cord injury survivors is making us think that maybe people with disabilities actually change what they use to measure the quality of their lives by. 15 things that make up quality of life In one study, 195 British spinal cord injured men participated in a research project that was carried out over several years. All of them were age 16 or older when injured, and by the time the research was done, they had all been injured at least 20 years. These men completed several psychological tests and surveys that measured depression, stress, well-being, and life satisfaction. For one of these tests they were asked to look at a list of 15 categories that contribute to quality of life in nondisabled people.
That list includes:
health and personal safety
relationships with family
relationship with spouse or partner
having and raising children
having close friends
helping and encouraging others
learning understanding oneself
expressing oneself in a creative manner
socializing with others
reading, listening to music, watching sports events, and other entertainment
participating in active recreation
participating in activities relating to local and national government
The men with spinal cord injuries were asked to rank how important each of these items was to them. Norms, or standards for other people – nondisabled people of about the same age living in the US general population – were available, so these were compared to what the men with spinal cord injuries reported. Different things matter to different people Guess what: compared with the nondisabled men, fewer of the SCI men thought material comforts, having and raising children, work, and participating in government were very important. However, more of the spinal cord injured men felt relationships with their relatives, learning, creative expression, and reading and other quiet leisure activities were important. On the next page you can see just how different the lists of what’s important were between the SCI men and men of about the same ages in the larger population:
What most SCI men rated as important, in descending order:
Health & personal safety
Relationships with relatives
Relationship with spouse or partner
What nondisabled men rated as important, in descending order:
Health & personal safety
Relationship with spouse or partner
Having & raising children
Is it possible that these differences are because the men with spinal cord injuries had aged, or grown up faster because of their disabilities? Not likely – their lists didn't look any more like the lists of older nondisabled people. Could it be that the men with spinal cord injuries just weren't as mature as the other men or that they thought more like younger non-disabled men? Also not likely – the lists of the SCI men didn't look any more like the lists of younger nondisabled men either. However, we did notice that what the people with spinal cord injuries thought was important seemed to be related to what they had actually done in their lives. For example, those who actually lived with children said children were more important; those who worked rated work higher; those who were married rated the importance of having a spouse higher. Also, although the men with spinal cord injuries rated their health as important, they did not see either their health or their work as being critical to their quality of life! Instead, what they said what mattered most to their quality of life was socializing, recreation, having a spouse or lover, having friends, and then, material comforts. You may be wondering if the fact that British spinal cord injured men and American nondisabled men were compared might explain the differences. Probably not: similar things have been found in American men with spinal cord injuries, and other researchers who studied people’s priorities among American, European and even Japanese societies reported that all three cultures are really quite similar in how they rank their important life events.
This tells us that people with spinal cord injuries may change their life priorities. As a result, it’s possible that what is important to you today may not be what’s important to you tomorrow.
This also seems to be telling us that people with spinal cord injuries may use different criteria to measure their life satisfaction and quality of life.
This means that what’s important to the nondisabled people around you – your friends, your family, perhaps even your spouse or partner – may not be what’s most important to you. Does this mean that other people’s values are good and yours are bad? Does it mean that you've got life figured out, and they don't? No, it just means that everyone values different things. You can't necessarily apply your standards to someone else, and vice versa.
In addition, it seems to be telling us that it’s important for you, as a spinal cord injury survivor, to give careful thought to what does matter. And, you need to let others – spouses, friends, parents, health care providers – know what it is that matters, and how your own needs can best be met.
Consider this for example: As a "patient" – as a person who uses physicians, therapists and rehabilitation programs – are you getting the care that you need in order to meet your goals? Or, is your care being decided by the health care professionals, based on whatever their goals are? This doesn't mean that health care providers are all busy forcing their own ideas on their customers or patients. In fact, most of the time, their goals probably match yours exactly. But, it does mean that those same health care providers are likely to assume – unless you tell them otherwise – that what’s important to them is also important to you, and that what they value, you also value.
While almost all of us share similar broad goals – to be happy, to feel connected, to make a contribution to society – the way we go about reaching those goals, and how we measure those goals may be very different. Disability in general, and spinal cord injury in particular, are only two of many things that can alter how we look at our lives. The big message Speak up. Let people who are important to you know what matters to you