the use of personal assistance and environmental supports for persons with a spinal cord injury...
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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
Race: 67.4% CaucasianRace: 67.4% Caucasian
22% African American22% African American
1.0% American Indian1.0% American Indian
8.2% Other/Unknown8.2% Other/Unknown
Marital Status:Marital Status: 25% Married 25% Married
69% Single, 69% Single, Divorced, Divorced,
or Widowedor Widowed
7% Other7% Other
Employed:Employed: 32.8% Paraplegia 32.8% Paraplegia
24.7% Quadriplegia24.7% Quadriplegia
DemographicsDemographics Study SampleStudy Sample
n: 103n: 103
Mean age:Mean age: 39.45 years 39.45 years
Gender:Gender: 75.7% Male 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:Marital Status: 25.2% Married 25.2% Married
71.9% Single, 71.9% Single, Divorced, Divorced,
or Widowedor Widowed
2.9% Other2.9% Other
Employed:Employed: 35.5% Paraplegia 35.5% Paraplegia
33.3% Quadriplegia33.3% Quadriplegia
(National Spinal Cord Injury Statistical Center, 2005; U.S. Census, 2000)
National Data of Entire National Data of Entire
U.S. PopulationU.S. Population
Race:Race: 81.7% Caucasian 81.7% Caucasian
12.9% African American12.9% African American
4.2% American Indian4.2% American Indian
9.6% Other/Unknown9.6% Other/Unknown
DemographicsDemographics Study SampleStudy Sample
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
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)
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!!!
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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.
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