Transcript Making the Connection - Boston Medical Center

Harnessing the Power of
the Information Age:
The Internet’s Unique
Application
New England Regional
Spinal Cord Injury Center at
Boston Medical Center
ACRM-ANSR Conference
Boston, MA
Learning Objectives
Participants will be able to…
• Summarize current research evidence
related to Internet access and usage by
people with disabilities, and intervention
studies in rehabilitation.
• Explain the rationale and evidence for use
of the Internet as a non-traditional
treatment modality.
• Use the presented model to identify ways
to integrate the Internet as it relates to
rehabilitation patients in their own
research and/or
clinical
practice.
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Outline of Presentation
• Background & Relevant
Research
• Evidence & Rational for Use of
the Internet as a Non-Traditional
Treatment Modality
• Translating Research into
Practice
• Need for Further Research
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**With discussion
throughout
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only
Background & Relevant
Research
Introduction: Why the
Internet?
• Growing scope of independence for
people with disabilities (pwd)
• Internet access crucial to
participation & functional
independence in modern society
– “Internet access is no longer a luxury
item...” (US Dpt of Commerce, 2001)
– As crucial as the telephone
• Experts highlight relevance to Rehab
– Pwd increasingly using Internet for health
info & resources
– Application to broad range of patient
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interventionsCopyright
& outcomes
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Session Participants
Questions
• Who here is using the Internet in
patient rehabilitation?
• What are you using it for?
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The Digital Divide for
pwd
• Disability status = race / ethnicity
• Pwd owning computer: 24% vs. 52%
(Kaye, 2000)
• ~25% - 50% less likely to have home
Internet access (ibid; Dpt of Commerce,
2001)
• Range: 10% to 65% use the Internet
– differing disability definitions
– 2006 rate for SCI = 65% (Goodman, unpub.)
• Divide is lessening, but of greater
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magnitude for
those
without (Katz, 2001;
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Roulstone, 2003)
Double Jeopardy
Phenomenon in SCI
(Goodman, unpub; Drainoni, Houlihan et al, 2004)
– Education: HS (59%) vs Bachelors+ (92%)
– Race/Ethnicity: White (72%) vs African
American & Hispanic populations (40%)
– Employment Status: Employed (83%) or
Student (89%) vs Unemployed/retired (60%)
– Marital Status: Married (74%) vs
Single/Divorced/Widowed (60%)
– Income:
•
•
•
•
•
<10K
32%
10K - 25K 63%
25K+ - 50K 79%
50K+ - 75K 83%
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Barriers to Internet
Access for Ppl w/ SCI
• Other observed barriers:
– Adaptive equipment
• Assessment needed, product testing,
expense
– Inexperience w/ computers &/or
Internet
– More “extroverted” personality
type
• Research demonstrating this
– Lack of awareness of available
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resourcesReproduction
&
services
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Primary Uses of Internet
Type of Use
Info Search
NERSCIC,
2006
NCDDR
Survey,
2000
SCI
Pwd
Kaye, 2000
Pwd
Gen Pop
65%*
58%
63%
64%
Email
59
52
67
75
Shopping
43
16
17
23
Disability/
Health Info
40
38*
--
--
28*
31
39*
45*
16
17
29
35
Entertainmen
t
Job Search
School
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18
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Trends in Seeking
Health Info Online
Study by Anderson (2004) of 186 adults:
computer-assisted telephone interviews,
national random sample
• In 2002, 80% of US adults sought health
info &/or services online
• Only ~10% e-mailed w/ providers,
purchased supplies online, managed a
chronic disease online
• > 50% want to use Internet for clinical
purposes
• Major barriers: potential threats to privacy,
inaccuracy of info, problems in evaluating
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the quality of online
info
& services, &
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physician disapproval
Outcomes Research
Review
1. Patient Education Outcomes
2. Psychosocial Outcomes
3. Functional Independence
Outcomes
Research Review:
Patient Education
• Most studied area; Majority w/
positive results
• Critical review of acceptability and
usefulness of computerized
interventions for pwd (Krishna et al, 1997)
– All diabetes: lowered blood glucose
• Inpatient breast cancer study w/
controls (N=162) (Lampe, 2004)
– Int grp: more home Internet use, helped
• Independent skin care promotion for
adults with paraplegia—acrossCopyright 2006, NERSCIC
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subjects design
(Pellerito, 2003)
Research Review:
Psychosocial Outcomes
• Psychological interventions show
improved outcomes in non-disabled:
– Hazardous drinking in students, doubleblind RCT (N=104) (Kypri et al, 2004)
– Complicated grief randomized waitlistcontrol trial (N=55) (Wagner et al, 2006)
• Large treatment effect: intrusion, avoidance,
maladaptive behavior, & general
psychopathology—maintained @ 3 mos
• “Online Therapy” in PsycINFO = 262
entries
– ex) Online Therapy:
A Therapist’s Guide to
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Expanding Your
Practice
(Todd, 2006)
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Research Review:
Functional Independence
• TBI computer knowledge training for
improved daily function--nonexperimental
(Ivanoff, 2002)
• Case-control study of computer-assisted
training improved wheelchair mobility on
obstacle course (Webster et al, 2001)
• Model Systems database analysis
(N=2926): Internet use significantly
improves FIM scores for people w/ SCI,
after adjusting for factors of race,
education, & interference by depression
and pain (Goodman, unpub.)
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NERSCIC Internet
Projects
• Pilot MSN TV Study
(*Copyright: Microsoft Corp.)
– Houlihan BV, Drainoni M, Warner G, Nesathurai S,
Wierbicky J (2003). The impact of Internet access for
people with spinal cord injuries: a descriptive analysis of
a pilot study. Disability and Rehabilitation. 25(8): 422431
• National SCI Technology Survey
– Drainoni M., Houlihan B., Williams S., Vedrani M., Esch
D., Lee-Hood E., Weiner C. (2004). Patterns of computer
and Internet use by persons with spinal cord injuries and
relationship to health-related quality of life. Archives of
Physical Medicine and Rehabilitation. 85(Nov): 18721879.
– Goodman et al, unpub.
• Internet Access Group Project
– Williams et al, unpub.
• The SCI Guide Online
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Pilot MSN TV Study:
Questions
1. How is quality of life [QoL]
affected by Internet use?
2. How do participants describe
the effects of Internet access?
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MSN TV Study
Description
• Provided first-time Internet
access to people with SCI at
home (N=26)
• MSN TV: like a cable box, with
television as monitor
• Measured QoL at 3 and 6 months
• Analyzed qualitative comments
into domains by number and
frequency
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MSN TV Study Results:
Question 1
How is QoL affected by Internet use?
• TRENDS seen by each QoL
component:
1. Global health: decline in physical
health; improvement in mental health
2. Social isolation: decrease in contact;
increase in romantic/sexual
relationships
3. Recreation: Statistically significant
decrease in solitary activities; increase
in social activities
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MSN TV Study Results:
Question 2
How do participants describe the
effects of Internet access
[benefits/risks]?
•
Has access to the Internet affected
you in any way?
1. Yes, a lot
2. Yes, somewhat
3. No, not much
4. No, not at all
For 1,2,or 3, how has it affected you?
•
Grouped by theme and ranked by
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MSN TV Study Results:
Question 2
• Most important benefits of
Internet use (in order):
1.
2.
3.
4.
Improved Quality of Life
Ease of Access to Information
Social Connection
Quality Information Available
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MSN TV Study Results:
Question 2
1. Improved Quality of Life
– “It’s a wonderful pastime. It actually
distracts my mind off some of my
discomfort. I don’t want medication, I’d
rather be distracted. I have spinal cord
pain, [the Internet] gets myself out of
myself.”
– “I have more to look forward to, it makes
me happier. It’s something different,
more than just the same old grind. I’ve
gotten more interested in what’s going
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on.”
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MSN TV Study Results:
Question 2
2. Ease of Access to Information
– “Anything that I’m interested in, I can
look up…I don’t get all stressed out. It’s
not easy for a quadriplegic to flip
through the Yellow Pages, so using the
[Internet] is easier.”
– “Whenever I need something I’m not
sure of, it’s right there…It’s just opened
up doors…It’s opened my eyes…to things
and places I couldn’t have seen before.”
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MSN TV Study Results:
Question 2
3. Social Connection
– “Being able to connect with people,
learn through people, make friends. The
Web allows me to trust other people
more without having to see them…
Communication, understanding people
better. I share more than through other
forms [of communication]. I share
intimacy, share problems and losses…It
helps unload frustration. I’m frustrated
with the scars on my face due to the
accident.”
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MSN TV Study Results:
Question 2
4. Quality Information Available
(health, transportation, employment)
– “The more I look, the more I find. The
more I find, the more I learn. The more I
learn, the “more better” my life
becomes…I have found many sites which
send e-mail newsletter updates which I
further review, sort them out, and
discard and select. Then I put them to
use.”
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National SCI Technology
Survey
• Follow up to Pilot MSN TV Study
using large national sample (N=520)
• Cross-sectional survey re:
computer/Internet use
• Analyzed relationship between
frequency of use and QoL (selfperceived health status, satisfaction
with life, emotional well-being, social
integration)
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Tech Survey Users vs.
Nonusers
• Significant difference by age,
race, education, employment
status, income
– Race
• Black=29%; Hispanic=32% vs.
White=62%
– Educational level
• <8th=9%; <H.S.=35%; H.S.=50%;
Assoc/Bach=79%; Grad=89%
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Technology Survey
Results: Q. 2 vs Pilot
How is QoL affected
by Internet use?
• Significant correlation between
frequency of Internet use and:
–
–
–
–
–
Self-perceived health status
Satisfaction with life
Feeling down/depressed/hopeless
Contact with friends
Contact with businesses
• Only business contacts is significant
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after adjusting
for age, race, etc.
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Evidence & Rationale for
the Internet as a NonTraditional Treatment
Modality
Rationale:
Internet in Rehabilitation
• PARTICIPANT IDEAS
• Tool for transition from acute to longterm rehab, incl. family & caregivers
– Shorter & shorter LOS
– Fills gap in services in transition to
community
• Inherently comprehensive in content
& application
• Can be integrated across the
spectrum of rehab activities
– ex. Educational
DVDs
reviewed in room by
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patient in between
therapy
sessions
Rationale
(Cont’d)
• Interactive, autonomous nature
more effective than
conventional modalities in
promoting learning (Bitter, 2005;
Schwinn & Ozanian, 2005)
• The readiness factor—can
search out info when ready to
receive it
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Educate & Empower
Individuals in Rehab
• “Knowledge is power”
• Social justice: bridge the Digital Divide
• Provide access via online training re: info &
resources otherwise hard to attain due to
marginalized status (Vesmarovich, 2000)
• Ex: OT trained African American community
to use Internet to obtain health info;
provided ongoing TA
– significantly increased health-related
empowerment (Suarez-Balcazar, 2005)
• Gives patient means to educate others:
family, caregivers, friends, etc.
• Other empowerment applications: self-care,
advocacy, disease
mngmt,
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Advancing Treatment
Goals w/ the Internet
• Disability education: self-guided &
through identified websites
• Assistive technology & devices:
assessment, training, “test drives”
• Vocational training: websites for jobseeking, job databases, computer/
Internet skill development
• Life skills training: independence in
daily living tasks (shopping, banking,
bill paying, etc.); ECUs
• Social support
& communication:
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email, message
boards,
Research: Vocational
Training
• Computer & Internet becoming
necessary tools in the workplace
(Wallace, 2004)
• For people w/ SCI, computer skills
and training are significant
predictors of employment and higher
earnings (Gilbride, 2000; Pell et al, 1997; Krueger et al,
1995)
• Internet skills open up option of
telework for pwd (Bricout, 2004)
• 62% of ppl w/ SCI wanted more workrelated info during acute rehab
(Wehman et al, Copyright
2000)
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Research: Social Support
& Communication
• Lowers social isolation & depression:
– Small RCT--Internet access & training w/
older adults; trends only (White et al, 2002)
– Breast cancer—medical info & online
support (Fogel et al, 2002; Owen et al, 2004)
– Youth w/ disabilities—online support group
(Burgstahler & Cronheim, 2001)
• Increases communication:
– 11-yr cohort study of patients w/ locked-in
syndrome—w/ family/friends (Doble et al, 2003)
– Population-based—email, etc. increased
telephone use,Copyright
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interaction, & face2006, NERSCIC
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permission
to-face friendships
etonly
al, 2001)
Role of Rehabilitation
Professional
• Rehabilitation employs holistic
paradigm to treatment of the
individual—good fit with Internet’s
broad applicability
• Internet training in group setting
facilitates adjustment to disability &
peer support
• Occupational therapist: assessment
of assistive technology needs &
adjustment throughout rehab
• Integrate Internet
technologies
to
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provide better
treatment
Role of Rehab
Profession (Cont’d)
• “The medical & health care
communities should establish
approaches that empower
consumers to use the Internet as
part of a total health care strategy,
rather than simply warn them about
Internet hazards. The statuses of
social workers, health educators, &
related health professionals may be
bolstered as they develop ways to
empower & support consumers'
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Internet utilization.”
(Oravec, 2001)
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Translating Research
into Practice
Using the Internet as a
Treatment Modality During
Acute Rehabilitation
Where is the Internet
Being Used for Rehab?
• Outpatient Examples
– Palo Alto, CA & Durham U Med Ctr (NC):
older adults
– U of Wash (Seattle): all disabilities,
empowerment
• Inpatient Examples
– U of Iowa: all inpatients
– Lubben Rehab Ctr: breast cancer-education
– Detroit: SCI--skin care
• Research review in Telehealth: SCI
(Bloemen-Vrencken et al, 2005) & Chronic med.
conditions (Liss &
Gluedkauf,
2002)
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• OTHER EX.: Participant
Experiences
Absence of Standardized
Use in Rehab
• Telehealth applications, as
noted
• Computer & Internet availability,
but no formal Internet training
provided inpatient or outpatient
• Despite evidence, expert
consensus, & societal trends
• Thus, the Internet Access Group
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Internet Access
Group Project
• Provide Internet training to newly
injured patients with SCI during acute
rehabilitation.
• Develop a curriculum for patient
education.
• Weekly 90-minute group lead by OT.
• Provide Internet access in patients
rooms.
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Components of
Internet Access
•
•
•
•
Education
AE / AT Training and Mastery
Home / Office Modification
Increased independence with
life tasks
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Group Process
• Weekly 90-minute Group
• 4-5 Patients
• Led by OT Staff
• Learning Modules
• Open Lab
• Assessment
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Adaptive Equipment and
Assistive Technology
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Patient Education
• Weekly Curriculum
– Anatomy of SCI and current
research projects
– Secondary medical conditions
– Life management tasks
– Sports, recreation, and leisure
– Christopher Reeve Paralysis
Resource Center and NSCIA
website review
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Life Management Skills
•
•
•
•
•
Grocery Shopping
Banking
Education
Employment
Communication
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Implementation
• Equipment
– Computers with Internet access,
work stations, assistive
technology, adaptive equipment
• Staffing
– One OT with SCI experience and 12 rehab aides or volunteers
• Scheduling
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Occupational Therapy
“Occupational therapy is skilled
treatment that helps individuals
achieve independence in all facets of
their lives. Occupational therapy
assists people in developing the
“skills for the job of living” necessary
for independent and satisfying lives.”
The American Occupational Therapy Association
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Training Group Implementation
Considerations
• Include goals specific to AT use &
computer/Internet access, for PT and
RT as well
• should be included weekly in the
interdisciplinary team scheduling
adhered to by all rehab personnel
• Develop & communicate to patients
organizational policy on misuse of
the Internet
• May need to budget for maintenance
costs—much lower if use facility’s
network.
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Gaining Access to the
Computer & Internet
• For low-income patients, look for
grants at: www.fundsnetservices.com;
http://fundingopps.cos.com; &
http://fdncenter.org  “Searchzone”)
• The Cristina Foundation
(www.cristina.org) has community
partners that distribute free
refurbished computers for consumers
• Look for local resources (libraries,
computer centers for disabled)
– Alliance for Technology
Access
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www.ataccess.org
COMING SOON!
The SCI Guide
• Goal: Create a comprehensive guide
to free, quality, peer-reviewed
resources accessed directly online
from anywhere
• Developed disability-specific rating
system for team of reviewers w/ SCI
• User-friendly w/ directions to
navigate site & best site features,
esp. for newly injured, technophobes,
& busy people
• Interactive: users post ratings,
suggest new Copyright
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Top Websites
for the Newly Injured*
*Copyright 2006: NERSCIC
•
NSCIA: New Injury
•
Craig Hospital: www.craighospital.org
•
www.spinalcord.org/html/newinjury
“Spinal Cord Injury”  ”Educational Brochures”
SCI-INFO-PAGES: www.sci-info-pages.com
Quadriplegic, Paraplegic, & Caregiver Resources
•
Christopher Reeve Foundation: New Paralysis
•
AARP: Home Design
•
Resource Kit www.christopherreeve.org
www.aarp.org/life/homedesign
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http://sci.rutgers.edu
Care Cure Community:
Need for Further
Research
Future Directions for
Research & Development
• ID/develop outcome measurements to study
Internet’s unique impact: life skills,
computer/Internet skills, empowerment,
quality of leisure time, online learning
• Focused intervention studies, in rehab
settings, with both broad & specific
populations, for evidence-based practice
• Develop standards for online counseling,
peer support groups, peer mentoring, etc.
• Develop curriculum, guides, & other
products to assist consumers in using the
Internet
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Presentation Content Made
Possible with Support from:
• National Institute of Disability &
Rehabilitation Research Model
SCI Systems Grant
(Grant # H133N000024)
• Christopher Reeve Foundation
Quality of Life Grants
• Microsoft Corporation, Inc.
• Boston Medical Center
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Final Questions
• What should priority areas of
research be?
• What new ways could you bring
the Internet into your rehab
setting?
• What barriers exist in your
setting?
• Questions for us?
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