Research Findings

Results from Project Shake-It-Up, a non-randomized clinical trial of a health promotion and capacity-building program for people with spinal cord injuries and related neurological disabilities.

Demographics

There were a total of 35 participants in this study: 13 in the first treatment group, 13 in the second treatment group (of whom 9 also served as the wait-list control group), and 9 is the comparison (never treated) group. Ages (M = 44.2, SD = 13.3) ranged from 20-73 years. There were 22 males and 13 females with the following disabilities: spinal-cord injury (16); multiple sclerosis (12); traumatic brain injury and stroke (2 each); and cerebral palsy, spina bifida, and aneurism (1 each). Their racial/ethnic groups were European-American (26), Asian- American (3), African-American and Hispanic- American (2 each), and other/missing (4) while their marital statuses were single (13), married (11), divorced (10), and missing (1).

Quantitative Results

In a non-randomized clinical trial, preliminary analysis indicates that there was a statistically significant improvement in self-efficacy scores when people participated in the program as compared to when people did not participate in the program.

For 24 people, for the six (6) months when they participated in the program, their self-efficacy scores improved, on average, 1.830 points (SD = 4.440), while for the 16 people who were monitored for six (6) months when they did NOT participate in the program, their self-efficacy scores declined, on average, 2.855 points (SD = 4.246).

The results of an independent-samples t-test were: t (38) = 2.855, p = 0.007, d = 0.925, indicating a large standardized effect size. This improvement in self-efficacy scores was consistent for males and females, married and non-married people, people with both MS and SCI, and people of all races, although the small sample size for some ethnic groups was too small for a good analysis.

No statistically significant differences were found in the changes in self-efficacy scores for the post-treatment follow-up period, indicating the possibility that the improvement in self-efficacy provided by the program was maintained over time.

No statistically significant differences were found in the change in physical activity scores (PADS) for any time period analyzed.

Qualitative Results

Qualitative data analysis is in process. Our plan is to compare MS and SCI, men and women. Based on a preliminary review of the data, and participant observation during the intervention, we expect to find some noticeable differences in the way people with SCI and MS conceptualize independence and disability and to suggest further concrete capacity-building strategies for each population.

Perhaps these differences initiate from different lived experiences of disability. SCI is generally stable while MS is progressive. Assistive technology viewed by project participants with SCI as liberating was perceived by many people with MS as a symbol of their increasing debilitation. Perhaps because people with SCI undergo extensive inpatient and outpatient rehabilitation during the outset of their disability, they are more likely to know about various assistive technologies and adapted recreation activities and associate them with improved ability to function.

For example, most of the participants with SCI knew about hand cycles and adapted sailboats and kayaks, most people with MS did not. Many of the individuals with MS were quite excited about their ability to engage in recreational activities that had believed they would never do again. One participant with MS joined a sailing team and expressed joy in the ability to compete athletically. Some institutionalized people with very high levels of SCI also experienced the exhilaration and joy of movement, through sailing and assisted handcycling.

There also appears to be some interesting gender differences, especially in the group with MS. All of the men drove independently, whereas only one of the women drove. Most of the women with MS relied on family or car-pooling with other project participants to get to our meetings. Men and women with SCI were more likely to drive or use public transportation though some also depended on rides from family members or each other. Many people with SCI who initially did not have licenses made it a goal and got their licenses before the project ended. Men with both MS and SCI were more likely to be working and going to school and women more likely to be engaged in home-based activities. A good number of both men and women with SCI and MS engaged in volunteer peer support activities, often in a leadership capacity. One individual with SCI ended up being hired by the collaborating Center for Independent Living to work as a peer counselor, currently serving as a peer counselor/case coordinator for several individuals from the research project.