Family, community rate high among the disabled
Physical condition seen as less important
People with excellent health tend to perceive the physical problems of spinal cord injury patients as the most important aspect of their lives. Not so, says a researcher who studied what matters most to people with disabilities.
Those with spinal cord injuries, traumatic brain injuries, and a group of residents of long-term care facilities consistently rated their physical condition as satisfactory to very good, which was the same rating a cohort of healthy college students gave on the same survey.
"They are accepting of their physical condition, or another interpretation is that relative to everything else in their lives, it’s not as important as we able-bodied people might think it is," says Ruth A. Huebner, PhD, OTR/L, associate professor in occupational therapy at Eastern Kentucky University in Richmond, KY. Huebner will present her research group’s findings at the annual conference of the American Occupational Ther apy Association of Bethesda, MD, this month in Seattle. (See study details, p. 46.)
The study found that family relationships and autonomy were two of the most important priorities in the lives of disabled individuals, Huebner says. "People with disabilities feel most satisfied with their relationships and least satisfied with their autonomy." As a group, the disabled individuals viewed their family’s support as very high, contributing to a better quality of life, but they rated their quality of life very low when it came to how much control they had over their environment. "They wanted to have some direction in their lives," she explains.
For example, the brain injury group was particularly dissatisfied with their quality of life as it related to work and learning opportunities. The study used another survey tool to assess the level of a person’s community integration. Researchers found a strong correlation between how well disabled people were integrated in their own communities and how satisfied they were with the overall quality of their lives. Those who were able to be more involved in their communities, whether it was through work or shopping on their own, were much more satisfied with their lives than those who were not as involved.
"It goes along with their decreased sense of control and also their desire for work, especially work and learning opportunities," Huebner says.
The study’s findings suggest that rehab facilities need to focus more on community integration, she says. "Much of rehab is focused on helping people with feeding and dressing themselves," she says.
Therapists also should help patients and their caregivers increase ties to the community through shopping and restaurant outings, as well as helping the patient return to some meaningful work, she says. "We’re not spending much time on that. Those are higher skills, and unfortunately, in rehab, much of the money dries up before those things can be really built into these programs."
Members of the study’s long-term care group rated their quality of life as satisfactory to very good, the same rating college students gave their quality of life, but the opportunity for learning was rated low. People in long-term care want more activities that stimulate them intellectually, including lectures on different topics, Huebner says.
The long-term care group tended to give low ratings to their ability to connect with others and develop friendships. While the facilities provided group activity experiences, the residents didn’t see many opportunities for developing intimate relationships. Also, the long-term care group wanted more work experiences, even something as simple as filing papers or wiping the facility’s tables, she adds.
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