Project Shake-It-Up was a research study to promote health and build the capacity of people with spinal cord injuries and related neuro-muscular disabilities. The research intervention consisted of 10 day-long sessions with healthy promotion and independent living workshops in the morning and physical and recreational activities in the afternoon.
Participants also received peer mentoring from a local Independent Living Center. Workshops and activities were designed and facilitated by people with disabilities using a peer-mentoring model.
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Project Shake-It-Up was conducted in collaboration with researchers from Stony Brook University, Brown University, the University of Illinois at Chicago and community organizations Shake-A-Leg Inc. and People Actively Reaching Independence (PARI) Inc. The study was funded by the Department of Education, National Institute on Disability and Rehabilitation Research (Field Initiated Research Award CFDA Program 84.133, PR/Award No: H133G010094), January 2002-December 2005.
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).
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 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.
- College Support for Students With Disabilities
- The National Center on Physical Activity and Disability
- Paralyzed Veterans of America
- Wheelchair Junkie
- Spinal Cord Injury Information Network
- New England Paralyzed Veterans Association
- National Wheelchair Association
- General Health and Wellness Information and links
- Disability Lifestyle magazine and resources
- Disability Home Accommodation Cost Guide
- Able Data
- SCI Information site tailored to end users
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- Information on Multiple Sclerosis
- The Multiple Sclerosis Foundation
- The National Multiple Sclerosis Society
- Amyotrophic Lateral Sclerosis (ALS) Resources
- Muscular Dystrophy Association
- Clinical Trials | MS
- ADA & People with MS | Employment Issues
- Know Your Rights: A Legal Guide for People Living with Multiple Sclerosis
- Keeping Your Home Through Debilitating Disease
- Social Security Disability Benefits Guide
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- Bedding For People with Disabilities: Complete Guide to Mattresses & Bedding Products
- Mobile Women
- Women's Health
- Find a Neurologist
- U.S. Department of Health and Human Services (HHS)
- Research and Training Center on Disability in Rural Communities
- Sail To Prevail
- International Disabled Self-Defense Association
- American Women’s Self Defense Association
- National Women’s Martial Arts Federation
- Cars, Boats, Planes and More: An Essential Resource Review of Travel and Accessibility for the Disabled
- Traveling With Disabilities
- Travel Accessibility Resources for the Disabled and Handicapped
- Handicapped Scuba Association International
- International Association for Handicapped Divers
- Wheelchairnet.org: information on sports and recreation
- Disabled Sports
- Sled Hockey
- Quad Rugby Association
- Information on Sports and Recreation
- Challenged Athletes Foundation, funding for Sports and Recreation Equipment
- Adapted Sports and Recreation Program
- Rehab Institute of Chicago
- Northwest Regional Spinal Cord Injury System
- Brian Injury Association of Rhode Island Resource Guide
- Rhode Island Developmental Disabilities Council, Recreation Guide
- Empower Spinal Cord Injury (EmpowerSci)
- UCLA Recreation (Adaptive programs)
- National Collaborative on Workforce and Disability
- Broad Futures
- EXPAND Program
- National Ability Center
- Business Ideas For People With Disabilities
- PARI Independent Living Center 401-725-1966
- Ocean State Center for Independent Living 401-738-1013
- Brain Injury Association of Rhode Island 401-461-6599
- Rhode Island Chapter National MS Society 401-738-8383
- Rhode Island Chapter MDA- 401-732-1910
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