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

Introduction Nearly 250,000 people in the U.S. have a spinal cord injury (SCI) Nearly 250,000 people in the U.S. have a spinal cord injury (SCI) Most people who sustain an SCI will use a wheelchair Most people who sustain an SCI will use a wheelchair Enabling device: assists people who have difficulty ambulating to move around their environment 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 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)

Types of Wheelchairs Manual Manual Who: People with enough strength in their upper extremities to propel themselves Who: People with enough strength in their upper extremities to propel themselves Power Power Who: People who cannot propel themselves or fatigue easily Who: People who cannot propel themselves or fatigue easily (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) Considerations: Overuse symptoms (repetitive use disorders), fatigue, disease progression/age may result in the need to switch to power chair Considerations: Heavier, require wider spaces, transportation needs, battery concerns

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

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

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

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 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. 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. Compare the amount of person-provided assistance and environmental support used by manual wheelchair users to the amount used by power wheelchair users.

Design & Participants Study Design: Cross sectional, exploratory research Study Design: Cross sectional, exploratory research Inclusion criteria Inclusion criteria Use of a wheelchair Use of a wheelchair History of spinal cord injury History of spinal cord injury Age 18 or older Age 18 or older Able to provide informed consent Able to provide informed consent Living in the community 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 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 (Gray, Hollingsworth, Stark, & Morgan, 2006)

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

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

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

Age at Onset of SCI Age Number of Participants Current Age

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

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

Analyses Personal assistance Personal assistance How much help from another person do you require to complete this task? 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 Environmental Support How often do you use accommodations, adaptations, or special equipment to complete this task? How often do you use accommodations, 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 the time the time the time the time Statistical analyses Statistical analyses Bivariate correlation Bivariate correlation Independent Samples t-test Independent Samples t-test

Results: Relationship Between ES and PA Manual Wheelchair Users Power Wheelchair Users Self Care (n=52).056 Mobility (n=52).079 Domestic Life (n=50).176 Interpersonal Parenting (n=18) Parenting (n=18) Intimacy (n=29) Intimacy (n=29) Major Life (n=45).051 Community (n=51).174 Self Care (n=51).359** Mobility (n=51).198 Domestic Life (n=40).331** Interpersonal Parenting (n=19) Parenting (n=19) Intimacy (n=20) Intimacy (n=20).629**.245 Major Life (n=45).512** Community (n=50).460** ** p≤.01

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

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

Discussion Correlations between ES & PA Correlations between ES & PA High correlations in PWC users, not MWC users 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 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) 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 Comparison of ES between device groups Higher use by PWC users in self-care and mobility domains 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 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 MWC users may be using less ES in home if some lower extremity strength remains Comparison of PA between device groups Comparison of PA between device groups PWC users report more PA use in all domains PWC users report more PA use in all domains May be due to greater impairment, impairments of upper extremities, lack of appropriate ES May be due to greater impairment, impairments of upper extremities, lack of appropriate ES

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

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

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