The Use of Personal Assistance and Environmental Supports for Persons with a Spinal Cord Injury

1. The Use of Personal Assistance and Environmental Supports for Persons with a Spinal Cord Injury Melissa S. Dappen, BA, OTS Washington University School of Medicine Program in Occupational Therapy April 6, 2006

2. Introduction • Nearly 250,000 people in the U.S. have a spinal cord injury (SCI) • Most people who sustain an SCI will use a wheelchair • Enabling device: assists people who have difficulty ambulating to move around their environment • Disabling device: can be rendered useless by barriers in the environment and within the user (Agree, Freedman, & Sengupta, 2004; National Spinal Cord Injury Statistical Center, 2005)

3. Types of Wheelchairs • Considerations: Heavier, require wider spaces, transportation needs, battery concerns • Considerations: Overuse symptoms (repetitive use disorders), fatigue, disease progression/age may result in the need to switch to power chair (Buning, Angelo, & Schmeler, 2001; Chaves, Boninger, Cooper, Fitzgerald, Gray, & Cooper, 2004; Kittel, DeMarco,& Stewart, 2003; Mann, Ottenbacher, & Fraas, 1999; Scherer & Glueckhauf, 2005; Tomita, Mann, Fraas, & Stanton, 2004)

4. Policy • Americans with Disabilities Act (1990) gives people with disabilities equal access to the public environment (in theory)… • BUT barriers remain: • Natural environment • Transportation • Policies • Services and assistance • Attitudes and support • Work and school (Gray, Gould, & Bickenbach, 2003; Richards, Bombardier, Tate, Dijkers, Gordon, Shewchuk, & DeVivo, 1999; Whiteneck, Meade, Dijkers, Tate, Bushnik, & Forchheimer, 2004)

5. Theoretical Model/Classification Framework • International Classification of Functioning, Disability and Health (ICF) • Classification that describes how people live with their health condition based on body functions and structures, activities, participation, and environment • Environmental factors include: • Natural environment and human-made changes to environment • Support and relationships • Attitudes • Services, systems, and policies • Products and technology (Gray & Hendershot, 1999; Perenboom & Chorus, 2003)

6. Relationships between Types of Support • Two types of support: Personal and Environmental • Personal support: paid vs. unpaid • Environmental support • Environmental modification • Assistive technology • Can environmental support substitute for personal assistance??? • Yes • Mann et al report positive results of environmental intervention • Hoenig et al report use of assistive equipment is associated with fewer hours of help for ADLs • No • Agree et al find, in a number of studies, that the greater the number of severe limitations, the more likely a person is to use a combination of personal care and equipment (Agree & Freedman, 2000; Agree & Freedman, 2005; Cook & Hussey, 2002; Hoenig, Taylor, & Sloan, 2003; Mann, Ottenbacjer, Fraas, Tomita, and Granger, 1999)

7. Research Proposal - Aims • Determine the relationship between the amount of assistance provided by persons and the amount provided by environmental support needed by manual wheelchair users with spinal cord injury. • Determine the relationship between the amount of assistance provided by persons and the amount provided by environmental support needed by power wheelchair users with spinal cord injury. • Compare the amount of person-provided assistance and environmental support used by manual wheelchair users to the amount used by power wheelchair users.

8. Study Design: Cross sectional, exploratory research Inclusion criteria Use of a wheelchair History of spinal cord injury Age 18 or older Able to provide informed consent Living in the community Recruitment of participants: Charitable organizations, service provider agencies, and advocacy organizations were asked to mail surveys to members with mobility impairments. Six hundred four people completed the services, 103 of whom had spinal cord injuries and used a manual or power wheelchair as their primary device Design & Participants (Gray, Hollingsworth, Stark, & Morgan, 2006)

9. Demographics • Study Sample n: 103 (52 manual, 51 power) Mean age: 39.45 years Gender: 75.7% Male Race: 84.5% Caucasian 11.7% African American 1.9% American Indian 1.9% Other/Unknown Marital Status: 25.2% Married 71.9% Single, Divorced, or Widowed 2.9% Other Employed: 35.5% Paraplegia 33.3% Quadriplegia (National Spinal Cord Injury Statistical Center, 2005; U.S. Census, 2000)

10. Demographics • Study Sample n: 103 Mean age: 39.45 years Gender: 75.7% Male Race: 84.5% Caucasian 11.7% African American 1.9% American Indian 1.9% Other/Unknown Marital Status: 25.2% Married 71.9% Single, Divorced, or Widowed 2.9% Other Employed: 35.5% Paraplegia 33.3% Quadriplegia • National Data n: approximately 250,000 Mean age: 37.6 years Gender: 79.6% Male Race: 67.4% Caucasian 22% African American 1.0% American Indian 8.2% Other/Unknown Marital Status: 25% Married 69% Single, Divorced, or Widowed 7% Other Employed: 32.8% Paraplegia 24.7% Quadriplegia (National Spinal Cord Injury Statistical Center, 2005; U.S. Census, 2000)

11. Demographics • Study Sample n: 103 Mean age: 39.45 years Gender: 75.7% Male Race: 84.5% Caucasian 11.7% African American 1.9% American Indian 1.9% Other/Unknown Marital Status: 25.2% Married 71.9% Single, Divorced, or Widowed 2.9% Other Employed: 35.5% Paraplegia 33.3% Quadriplegia • National Data of Entire U.S. Population Race: 81.7% Caucasian 12.9% African American 4.2% American Indian 9.6% Other/Unknown (National Spinal Cord Injury Statistical Center, 2005; U.S. Census, 2000)

12. Age at Onset of SCI Current Age Number of Participants Number of Participants Age Age

13. Instruments • CORE: Standard survey of demographic and health information • Gender • Age (at onset and current) • Ethnicity • Marital status • Employment status • Diagnostic conditions • Type of mobility device (Gray, Hollingsworth, Stark, & Morgan, 2006)

14. Instruments • PARTS/M: Addresses participation in major life activities by people with mobility limitations • Six domains • Self-Care: Dressing, Bathing, Bladder Care, Bowel Care, Meals • Mobility: Moving Inside Home, Leaving Home, Vacations • Domestic Life: Working Inside Home, Exterior Maintenance • Interpersonal Interactions & Relationships: Parenting, Intimacy • Major Life Areas: Employment, Volunteering, Money Management • Community, Social, & Civic Life: Community Activities, Religious Activities, Socializing, Leisure Activities, Active Recreation • Four components of participation: temporal, evaluative, health-related limitations, and support (including Personal Assistance and Environmental Support) (Gray, Hollingsworth, Stark, & Morgan, 2006)

15. Analyses • Personal assistance • How much help from another person do you require to complete this task? None Just a little A moderate amount A great deal • Environmental Support • How often do you useaccommodations, adaptations, or special equipment to complete this task? Never A little of Some of Most of All of the time the time the time the time • Statistical analyses • Bivariate correlation • Independent Samples t-test

16. Manual Wheelchair Users Power Wheelchair Users Results:Relationship Between ES and PA ** p≤.01

17. Results: Mean Amount of ES Used * Manual Wheelchair Users Power Wheelchair Users * Mean Amount of ES Used SELF MOBILITY DOMESTIC INTER- MAJOR LIFE COMMUNITY CARE LIFE PERSONAL AREAS *= p≤.05

18. Results:Mean Amount of PA Used * Manual Wheelchair Users Power Wheelchair Users * * * * Mean Amount of PAS Used * SELF MOBILITY DOMESTIC INTER- MAJOR LIFE COMMUNITY CARE LIFE PERSONAL AREAS *= p≤.05

19. Discussion • Correlations between ES & PA • High correlations in PWC users, not MWC users • People with more severe impairments are likely to use both types of support at high levels (resulting in high correlations) • People with less severe impairments may pick one type of support alone in order to participate (resulting in low correlations) • Comparison of ES between device groups • Higher use by PWC users in self-care and mobility domains • Modifications may be used often when at home, but not as much in the community • MWC users may be using less ES in home if some lower extremity strength remains • Comparison of PA between device groups • PWC users report more PA use in all domains • May be due to greater impairment, impairments of upper extremities, lack of appropriate ES

20. Implications for Occupational Therapy • OTs have a unique understanding of the interrelations between components of participation • The therapist for a person with a spinal cord must take into consideration: • The type of wheelchair being prescribed • The need and use of personal assistance and environmental support • How to best educate the client and loved ones • What the person wants to achieve every day

21. David Gray, PhD Holly Hollingsworth, PhD Kerri Morgan Denise Curl Everyone else at GrayLab My classmates My Family Alison Scheiderer Andy GO GRAYLAB!!! Thanks!!

22. References • Agree, E. M., & Freedman, V. A. (2000). Incorporating assistive devices into community-based long-term care: An analysis of the potential for substitution and supplementation. Journal of Aging and Health, 12(2): 426-450. • Agree, E. M., Freedman, V. A., Cornman, J. C., Wolf, D. A., & Marcotte, J. E. (2005). Reconsidering substitution in long-term care: When does assistive technology take the place of personal care? Journal of Gerontology, 60B (5): S272-S280. • Agree, E. M., Freedman, V. A., & Sengupta, M. (2004). Factors influencing the use of mobility technology in community-based long-term care. Journal of Aging and Health, 16(2): 267-307. • Allen, S. M., Foster, A., Berg, K. (2001). Receiving help at home: The interplay of human and technological assistance. The Journals of Gerontology, 56B (6): S374-S382. • Buning, M.E., Angelo, J.A., & Schmeler, M.R. (2001). Occupational performance and the transition to powered mobility: A pilot study. The American Journal of Occupational Therapy, 55(3): 339-344. • Chaves, E. S., Boninger, M. L., Cooper, R., Fitzgerald, S. G., Gray, D. B., Cooper, R. A. (2004). Assessing the influence of wheelchair technology on perception of participation in spinal cord injury. Archives of Physical Medicine & Rehabilitation, 85: 1854:1858. • Cook, A. M., & Hussey, S. M. (2002). Assistive Technology: Principles and Practice, 2nd ed. St. Louis, MO: Mosby, Inc. • Gray, D.B., Gould, M., & Bickenbach, J.E. (2003). Environmental barriers and disability. Journal of Architectural and Planning Research, 20(1): 29-37. • Gray, D.B., Hendershot, G.E. (1999). The ICIDH-2: Developments for a new era of outcomes research. Archives of Physical Medicine and Rehabilitation, 81: S10-S14. • Gray, D. B., Hollingsworth, H. H., Stark, S. L., & Morgan, K. A. (2006). Participation Survey/Mobility: Psychometric properties of a measure of participation for people with mobility impairments and limitations. Archives of Physical Medicine and Rehabilitation, 87(2):189-197.

23. References (cont.) • Hoenig, H., Taylor, D.H., & Sloan, F.A. (2003). Does assistive technology substitute for personal assistance among the disabled elderly? American Journal of Public Health, 93(2) 330-337. • Kittel, A., Di Marco, A., & Stewart, H. (2002). Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 24: 106-114. • Mann, W. C., Ottenbacher, K. J., & Fraas, L. (1999). Effectiveness of assistive technology and environmental interventions in maintaining independence and reducing home care costs for the frail elderly. Archives of Family Medicine, 8: 210-217. • National Spinal Cord Injury Statistical Center. (2005). Facts and figures at a glance. Retrieved December 1, 2005 from http://www.spinalcord.uab.edu. • Perenboom, R.J.M. & Chorus, A.M.J. (2003) Measuring participation according to the International Classification of Functioning, Disability, and Health (ICF). Disability and Rehabilitation, 25(11-12): 577-587. • Richards, J. S., Bombardier, C. H., Tate, D., Dijkers, M., Gordon, W. Shewchuk, R., & DeVivo, M. J. (1999). Access to the environment and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 80: 1501-1506. • Scherer, M.J. & Glueckauf, R. (2005) Assessing the benefit of assistive technologies for activities and participation. Rehabilitation Psychology, 50(2): 132-141. • Tomita, M. R., Mann, W. C., Fraas, L. F., & Stanton, K. M. (2004). Predictors of the use of assistive devices that address physical impairments among community-based frail elders. The Journal of Applied Gerontology, 23(2): 141-155. • Weitzenkamp, D. A, Whiteneck, G. G., & Lammertse, D. P. (2002). Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 83, 1399-1406. • Whiteneck, G., Meade, M.A., Dijkers, M., Tate, D.G., Bushnik, T., & Forchheimer. (2004). Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 85: 1793-1803.