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

The Use of Personal The Use of Personal Assistance and Assistance and Environmental Environmental

Supports for Persons Supports for Persons with a Spinal Cord with a Spinal Cord

InjuryInjuryMelissa S. Dappen, BA, OTSMelissa S. Dappen, BA, OTS

Washington University School of MedicineWashington University School of MedicineProgram in Occupational TherapyProgram in Occupational Therapy

April 6, 2006April 6, 2006

IntroductionIntroduction

Nearly 250,000 people in the U.S. Nearly 250,000 people in the U.S. have a spinal cord injury (SCI)have a spinal cord injury (SCI)

Most people who sustain an SCI will Most people who sustain an SCI will use a wheelchairuse a wheelchair Enabling device:Enabling device: assists people who assists people who

have difficulty ambulating to move have difficulty ambulating to move around their environmentaround their environment

Disabling device:Disabling device: can be rendered can be rendered useless by barriers in the useless by barriers in the environment and within the user environment and within the user

(Agree, Freedman, & Sengupta, 2004; National Spinal Cord Injury Statistical Center, 2005)

Types of WheelchairsTypes of WheelchairsManualManual

Who: People with Who: People with enough strength in enough strength in their upper their upper extremities to extremities to propel themselvespropel themselves

PowerPowerWho: People who Who: People who cannot propel cannot propel themselves or themselves or fatigue easilyfatigue 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

PolicyPolicy Americans with Disabilities Act (1990) Americans with Disabilities Act (1990)

gives people with disabilities equal gives people with disabilities equal access to the public environment (in access to the public environment (in theory)…theory)…

BUT barriers remain:BUT barriers remain: Natural environmentNatural environment TransportationTransportation PoliciesPolicies Services and assistanceServices and assistance Attitudes and supportAttitudes and support Work and schoolWork and school

(Gray, Gould, & Bickenbach, 2003; Richards, Bombardier, Tate, Dijkers, Gordon, Shewchuk,

& DeVivo, 1999; Whiteneck, Meade, Dijkers, Tate, Bushnik, & Forchheimer, 2004)

Theoretical Theoretical Model/Classification Model/Classification

FrameworkFramework International Classification of International Classification of

Functioning, Disability and Health Functioning, Disability and Health (ICF)(ICF) Classification that describes how people Classification that describes how people

live with their health condition based on live with their health condition based on body functions and structures, activities, body functions and structures, activities, participation, and environmentparticipation, and environment

Environmental factors include:Environmental factors include: Natural environment and human-made changes Natural environment and human-made changes

to environmentto environment Support and relationshipsSupport and relationships AttitudesAttitudes Services, systems, and policiesServices, systems, and policies Products and technologyProducts and technology

(Gray & Hendershot, 1999; Perenboom & Chorus, 2003)

Relationships between Relationships between Types of SupportTypes of Support

Two types of support: Two types of support: Personal and EnvironmentalPersonal and Environmental Personal support: paid vs. unpaidPersonal support: paid vs. unpaid Environmental supportEnvironmental support

Environmental modificationEnvironmental modification Assistive technologyAssistive technology

Can environmental support substitute for personal Can environmental support substitute for personal assistance???assistance??? YesYes

Mann et al report positive results Mann et al report positive results

of environmental interventionof environmental intervention Hoenig et al report use of assistive Hoenig et al report use of assistive

equipment is associated with fewer equipment is associated with fewer

hours of help for ADLshours of help for ADLs

(Agree & Freedman, 2000; Agree & Freedman, 2005; Cook & Hussey, 2002; Hoenig,

Taylor, & Sloan, 2003; Mann, Ottenbacjer, Fraas, Tomita, and Granger, 1999)

NoNo Agree et al find, in a Agree et al find, in a number of number of studies, that the greater studies, that the greater thethe number of severe number of severe limitations, the limitations, the more likely a person is to more likely a person is to use a use a combination of personal combination of personal care and care and equipmentequipment

Research Proposal - AimsResearch Proposal - Aims Determine the relationship between the Determine the relationship between the

amount of assistance provided by persons amount of assistance provided by persons and the amount provided by environmental and the amount provided by environmental support needed by manual wheelchair support needed by manual wheelchair users with spinal cord injury.users with spinal cord injury.

Determine the relationship between the Determine the relationship between the amount of assistance provided by persons amount of assistance provided by persons and the amount provided by environmental and the amount provided by environmental support needed by power wheelchair users support needed by power wheelchair users with spinal cord injury.with spinal cord injury.

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

Design & ParticipantsDesign & Participants Study Design: Cross sectional, exploratory Study Design: Cross sectional, exploratory

researchresearch Inclusion criteriaInclusion criteria

Use of a wheelchairUse of a wheelchair History of spinal cord injuryHistory of spinal cord injury Age 18 or olderAge 18 or older Able to provide informed consentAble to provide informed consent Living in the communityLiving in the community

Recruitment of participants: Charitable Recruitment of participants: Charitable organizations, service provider agencies, and organizations, service provider agencies, and advocacy organizations were asked to mail advocacy organizations were asked to mail surveys to members with mobility surveys to members with mobility impairments. Six hundred four people impairments. Six hundred four people completed the services, 103 of whom had completed the services, 103 of whom had spinal cord injuries and used a manual or spinal cord injuries and used a manual or power wheelchair as their primary devicepower wheelchair as their primary device(Gray, Hollingsworth, Stark, & Morgan, 2006)

DemographicsDemographics Study SampleStudy Sample

n: 103 (52 manual, 51 power)n: 103 (52 manual, 51 power)

Mean age: 39.45 yearsMean age: 39.45 years

Gender: 75.7% MaleGender: 75.7% Male

Race: 84.5% CaucasianRace: 84.5% Caucasian

11.7% African American11.7% African American

1.9% American Indian1.9% American Indian

1.9% Other/Unknown1.9% Other/Unknown

Marital Status: 25.2% Married Marital Status: 25.2% Married

71.9% Single, 71.9% Single, Divorced, Divorced,

or Widowedor Widowed

2.9% Other2.9% Other

Employed: 35.5% ParaplegiaEmployed: 35.5% Paraplegia

33.3% Quadriplegia33.3% Quadriplegia

(National Spinal Cord Injury Statistical Center, 2005; U.S. Census, 2000)

National DataNational Datan: approximately 250,000n: approximately 250,000

Mean age:Mean age: 37.6 years 37.6 years

Gender:Gender: 79.6% Male 79.6% Male


22% African American22% African American



Marital Status:Marital Status: 25% Married 25% Married

69% Single, 69% Single, Divorced, Divorced,


7% Other7% Other

Employed:Employed: 32.8% Paraplegia 32.8% Paraplegia



n: 103n: 103

Mean age:Mean age: 39.45 years 39.45 years

Gender:Gender: 75.7% Male 75.7% Male





Marital Status:Marital Status: 25.2% Married 25.2% Married




Employed:Employed: 35.5% Paraplegia 35.5% Paraplegia



National Data of Entire National Data of Entire

U.S. PopulationU.S. Population

Race:Race: 81.7% Caucasian 81.7% Caucasian





n: 103n: 103

Mean age: 39.45 yearsMean age: 39.45 years

Gender: 75.7% MaleGender: 75.7% Male

Race:Race: 84.5% Caucasian 84.5% Caucasian




Marital Status: 25.2% Married Marital Status: 25.2% Married




Employed: 35.5% ParaplegiaEmployed: 35.5% Paraplegia



Age at Onset of Age at Onset of SCISCI

0

5

10

15

20

25

30

35

18-25 26-35 36-45 46-55 56-65 66-75

0

5

10

15

20

25

1-10 10-20 20-30 30-40 40-50 50-60 60-70

Age Age

Nu

mb

er

of

Part

icip

an

ts

Nu

mb

er

of

Part

icip

an

ts

Current AgeCurrent Age

InstrumentsInstruments

CORE:CORE: Standard survey of demographic Standard survey of demographic and health informationand health information GenderGender Age (at onset and current)Age (at onset and current) EthnicityEthnicity Marital statusMarital status Employment statusEmployment status Diagnostic conditionsDiagnostic conditions Type of mobility deviceType of mobility device

(Gray, Hollingsworth, Stark, & Morgan, 2006)

InstrumentsInstruments PARTS/M:PARTS/M: Addresses participation in major life Addresses participation in major life

activities by people with mobility limitationsactivities by people with mobility limitations Six domainsSix domains

Self-Care:Self-Care: Dressing, Bathing, Bladder Care, Bowel Care, Meals Dressing, Bathing, Bladder Care, Bowel Care, Meals Mobility:Mobility: Moving Inside Home, Leaving Home, Vacations Moving Inside Home, Leaving Home, Vacations Domestic Life:Domestic Life: Working Inside Home, Exterior Maintenance Working Inside Home, Exterior Maintenance Interpersonal Interactions & Relationships:Interpersonal Interactions & Relationships: Parenting, Parenting,

IntimacyIntimacy Major Life Areas:Major Life Areas: Employment, Volunteering, Money Employment, Volunteering, Money

ManagementManagement Community, Social, & Civic Life:Community, Social, & Civic Life: Community Activities, Community Activities,

Religious Activities, Socializing, Leisure Activities, Active Religious Activities, Socializing, Leisure Activities, Active RecreationRecreation

Four components of participation: temporal, evaluative, Four components of participation: temporal, evaluative, health-related limitations, and support (including health-related limitations, and support (including Personal Personal Assistance and Environmental SupportAssistance and Environmental Support))

(Gray, Hollingsworth, Stark, & Morgan, 2006)

AnalysesAnalyses Personal assistancePersonal assistance

How much How much help from another personhelp from another person do you do you require to complete this task? require to complete this task?

NoneNone Just a little A moderate amount Just a little A moderate amount A great deal A great deal

Environmental SupportEnvironmental Support

How often do you useHow often do you use accommodations, accommodations, adaptations, or special equipmentadaptations, or special equipment to complete this to complete this task?task?

Never A little of Never A little of Some of Most Some of Most of of All of All of the time the time the time the time the time the time

the time the time

Statistical analysesStatistical analyses Bivariate correlationBivariate correlation Independent Samples t-testIndependent Samples t-test

Results:Results:Relationship Between ES Relationship Between ES

and PAand PAManual Wheelchair Manual Wheelchair

UsersUsersPower Wheelchair Power Wheelchair

UsersUsersSelf Care Self Care (n=52)(n=52)

.056.056

Mobility Mobility (n=52)(n=52)

.079.079

Domestic Life Domestic Life (n=50)(n=50)

.176.176

Interpersonal Interpersonal

Parenting Parenting (n=18)(n=18)

Intimacy Intimacy (n=29)(n=29)

-.265-.265

-.100-.100

Major Life Major Life (n=45)(n=45)

.051.051

Community Community (n=51)(n=51)

.174.174

Self CareSelf Care (n=51)(n=51)

.359.359****

Mobility Mobility (n=51)(n=51)

.198.198

Domestic LifeDomestic Life (n=40)(n=40)

.331.331****

Interpersonal Interpersonal

ParentingParenting (n=19)(n=19)

Intimacy Intimacy (n=20)(n=20)

.629**.629**

.245.245

Major LifeMajor Life (n=45)(n=45)

.512.512****

CommunityCommunity (n=50)(n=50)

.460.460****

** p≤.01

Results: Results: Mean Amount of ES UsedMean Amount of ES Used

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

512

*

*

*= p≤.05

Mean

Am

ou

nt

of

ES

U

sed

SELF MOBILITY DOMESTIC INTER- MAJOR LIFE COMMUNITY CARE LIFE PERSONAL AREAS

Manual Wheelchair Users Power Wheelchair Users

Results:Results:Mean Amount of PA UsedMean Amount of PA Used

0

0.5

1

1.5

2

2.5

3

3.5

4

**

*

** *

Mean

Am

ou

nt

of

PA

S U

sed

SELF MOBILITY DOMESTIC INTER- MAJOR LIFE COMMUNITYCARE LIFE PERSONAL AREAS

*= p≤.05

Manual Wheelchair Users Power Wheelchair Users

DiscussionDiscussion Correlations between ES & PACorrelations between ES & PA

High correlations in PWC users, not MWC usersHigh correlations in PWC users, not MWC users People with more severe impairments are likely to use People with more severe impairments are likely to use

both types of support at high levels (resulting in high both types of support at high levels (resulting in high correlations)correlations)

People with less severe impairments may pick one type of People with less severe impairments may pick one type of support alone in order to participate (resulting in low support alone in order to participate (resulting in low correlations)correlations)

Comparison of ES between device groupsComparison of ES between device groups Higher use by PWC users in self-care and mobility Higher use by PWC users in self-care and mobility

domainsdomains Modifications may be used often when at home, but not as Modifications may be used often when at home, but not as

much in the communitymuch in the community MWC users may be using less ES in home if some lower MWC users may be using less ES in home if some lower

extremity strength remainsextremity strength remains Comparison of PA between device groupsComparison of PA between device groups

PWC users report more PA use in all domainsPWC users report more PA use in all domains May be due to greater impairment, impairments of upper May be due to greater impairment, impairments of upper

extremities, lack of appropriate ESextremities, lack of appropriate ES

Implications for Implications for Occupational TherapyOccupational Therapy

OTs have a unique understanding of the OTs have a unique understanding of the interrelations between components of interrelations between components of participationparticipation

The therapist for a person with a spinal The therapist for a person with a spinal cord must take into consideration:cord must take into consideration: The The type of wheelchairtype of wheelchair being prescribed being prescribed The need and use of The need and use of personal assistance and personal assistance and

environmental supportenvironmental support How to best educate the client and loved How to best educate the client and loved

onesones What the person wants to achieve every dayWhat the person wants to achieve every day

Thanks!!Thanks!!

David Gray, PhDDavid Gray, PhD Holly Holly

Hollingsworth, PhDHollingsworth, PhD Kerri MorganKerri Morgan Denise CurlDenise Curl Everyone else at Everyone else at

GrayLabGrayLab My classmatesMy classmates My FamilyMy Family Alison ScheidererAlison Scheiderer AndyAndy

GO GRAYLAB!!!GO GRAYLAB!!!

ReferencesReferences Agree, E. M., & Freedman, V. A. (2000). Incorporating assistive devices into community-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. based long-term care: An analysis of the potential for substitution and supplementation. Journal of Aging and Health, 12Journal of Aging and Health, 12(2): 426-450.(2): 426-450.

Agree, E. M., Freedman, V. A., Cornman, J. C., Wolf, D. A., & Marcotte, J. E. (2005). 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 Reconsidering substitution in long-term care: When does assistive technology take the place of personal care? of personal care? Journal of Gerontology, 60Journal of Gerontology, 60B (5): S272-S280.B (5): S272-S280.

Agree, E. M., Freedman, V. A., & Sengupta, M. (2004). Factors influencing the use of Agree, E. M., Freedman, V. A., & Sengupta, M. (2004). Factors influencing the use of mobility technology in community-based long-term care. mobility technology in community-based long-term care. Journal of Aging and Health, 16Journal of Aging and Health, 16(2): (2): 267-307.267-307.

Allen, S. M., Foster, A., Berg, K. Allen, S. M., Foster, A., Berg, K. (2001). Receiving help at home: The interplay of human (2001). Receiving help at home: The interplay of human and technological assistance. and technological assistance. The Journals of Gerontology, 56The Journals of Gerontology, 56B (6): S374-S382.B (6): S374-S382.

Buning, M.E., Angelo, J.A., & Schmeler, M.R. Buning, M.E., Angelo, J.A., & Schmeler, M.R. (2001). Occupational performance and the (2001). Occupational performance and the transition to powered mobility: A pilot study. transition to powered mobility: A pilot study. The American Journal of Occupational The American Journal of Occupational Therapy, 55Therapy, 55(3): 339-344.(3): 339-344.

Chaves, E. S., Boninger, M. L., Cooper, R., Fitzgerald, S. G., Gray, D. B., Cooper, R. A. 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 (2004). Assessing the influence of wheelchair technology on perception of participation in spinal cord injury. spinal cord injury. Archives of Physical Medicine & Rehabilitation, 85: Archives of Physical Medicine & Rehabilitation, 85: 1854:1858.1854:1858.

Cook, A. M., & Hussey, S. M. (2002). Cook, A. M., & Hussey, S. M. (2002). Assistive Technology: Principles and PracticeAssistive Technology: Principles and Practice, 2nd ed. , 2nd ed. St. Louis, MO: Mosby, Inc. St. Louis, MO: Mosby, Inc.

Gray, D.B., Gould, M., & Bickenbach, J.E. (2003). Environmental barriers and disability. Gray, D.B., Gould, M., & Bickenbach, J.E. (2003). Environmental barriers and disability. Journal of Architectural and Planning Research, 20Journal of Architectural and Planning Research, 20(1): 29-37.(1): 29-37.

Gray, D.B., Hendershot, G.E. (1999). The ICIDH-2: Developments for a new era of Gray, D.B., Hendershot, G.E. (1999). The ICIDH-2: Developments for a new era of outcomes research. outcomes research. Archives of Physical Medicine and Rehabilitation, 81:Archives of Physical Medicine and Rehabilitation, 81: S10-S14. S10-S14.

Gray, D. B., Hollingsworth, H. H., Stark, S. L., & Morgan, K. A. (2006). Participation 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 Survey/Mobility: Psychometric properties of a measure of participation for people with mobility impairments and limitations. mobility impairments and limitations. Archives of Physical Medicine and RehabilitationArchives of Physical Medicine and Rehabilitation, , 8787(2):189-197. (2):189-197.

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personal assistance among the disabled elderly? personal assistance among the disabled elderly? American Journal of Public Health, 93American Journal of Public Health, 93(2) 330-(2) 330-337.337.

Kittel, A., Di Marco, A., & Stewart, H. Kittel, A., Di Marco, A., & Stewart, H. (2002). Factors influencing the decision to abandon (2002). Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. manual wheelchairs for three individuals with a spinal cord injury. Disability and Disability and Rehabilitation, 24Rehabilitation, 24: 106-114.: 106-114.

Mann, W. C., Ottenbacher, K. J., & Fraas, L. Mann, W. C., Ottenbacher, K. J., & Fraas, L. (1999). Effectiveness of assistive technology and (1999). Effectiveness of assistive technology and environmental interventions in maintaining independence and reducing home care costs for environmental interventions in maintaining independence and reducing home care costs for the frail elderly. the frail elderly. Archives of Family Medicine, 8Archives of Family Medicine, 8: 210-217.: 210-217.

National Spinal Cord Injury Statistical Center. (2005). Facts and figures at a glance. National Spinal Cord Injury Statistical Center. (2005). Facts and figures at a glance. Retrieved December 1, 2005 from http://www.spinalcord.uab.edu.Retrieved December 1, 2005 from http://www.spinalcord.uab.edu.

Perenboom, R.J.M. & Chorus, A.M.J. (2003) Measuring participation according to the Perenboom, R.J.M. & Chorus, A.M.J. (2003) Measuring participation according to the International Classification of Functioning, Disability, and Health (ICF). International Classification of Functioning, Disability, and Health (ICF). Disability and Disability and Rehabilitation, 25Rehabilitation, 25(11-12): 577-587.(11-12): 577-587.

Richards, J. S., Bombardier, C. H., Tate, D., Dijkers, M., Gordon, W. Shewchuk, R., & DeVivo, 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. M. J. (1999). Access to the environment and life satisfaction after spinal cord injury. Archives Archives of Physical Medicine and Rehabilitation, 80: of Physical Medicine and Rehabilitation, 80: 1501-1506.1501-1506.

Scherer, M.J. & Glueckauf, R. Scherer, M.J. & Glueckauf, R. (2005) Assessing the benefit of assistive technologies for (2005) Assessing the benefit of assistive technologies for activities and participation. activities and participation. Rehabilitation Psychology, 50Rehabilitation Psychology, 50(2): 132-141.(2): 132-141.

Tomita, M. R., Mann, W. C., Fraas, L. F., & Stanton, K. M. (2004). Tomita, M. R., Mann, W. C., Fraas, L. F., & Stanton, K. M. (2004). Predictors of the use of Predictors of the use of assistive devices that address physical impairments among community-based frail elders. assistive devices that address physical impairments among community-based frail elders. The The Journal of Applied Gerontology, 23Journal of Applied Gerontology, 23(2): 141-155.(2): 141-155.

Weitzenkamp, D. A, Whiteneck, G. G., & Lammertse, D. P. (2002). Predictors of personal care Weitzenkamp, D. A, Whiteneck, G. G., & Lammertse, D. P. (2002). Predictors of personal care assistance for people with spinal cord injury. assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, Archives of Physical Medicine and Rehabilitation, 8383, 1399-1406., 1399-1406.

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