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Harnessing the Power of Harnessing the Power of the Information Age: the Information Age: The Internet’s Unique The Internet’s Unique ApplicationApplication
New England Regional New England Regional
Spinal Cord Injury Center atSpinal Cord Injury Center at
Boston Medical CenterBoston Medical Center
ACRM-ANSR ConferenceACRM-ANSR Conference
Boston, MABoston, MA
September 28, 2006September 28, 2006
Copyright 2006, NERSCIC Reproduction by permission only
Learning ObjectivesLearning Objectives
Participants will be able to…Participants will be able to…• Summarize current research evidence related Summarize current research evidence related
to Internet access and usage by people with to Internet access and usage by people with disabilities, and intervention studies in disabilities, and intervention studies in rehabilitation.rehabilitation.
• Explain the rationale and evidence for use of Explain the rationale and evidence for use of the Internet as a non-traditional treatment the Internet as a non-traditional treatment modality.modality.
• Use the presented model to identify ways to Use the presented model to identify ways to integrate the Internet as it relates to integrate the Internet as it relates to rehabilitation patients in their own research rehabilitation patients in their own research and/or clinical practice.and/or clinical practice.
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Outline of PresentationOutline of Presentation
• Background & Relevant ResearchBackground & Relevant Research• Evidence & Rational for Use of the Evidence & Rational for Use of the
Internet as a Non-Traditional Internet as a Non-Traditional Treatment ModalityTreatment Modality
• Translating Research into PracticeTranslating Research into Practice• Need for Further ResearchNeed for Further Research**With discussion time throughout**With discussion time throughout
Background & Relevant Background & Relevant ResearchResearch
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Introduction: Why the Introduction: Why the Internet?Internet?
• Growing scope of independence for Growing scope of independence for people with disabilities (pwd)people with disabilities (pwd)
• Internet access crucial to participation & Internet access crucial to participation & functional independence in modern functional independence in modern societysociety– ““Internet access is no longer a luxury item...” Internet access is no longer a luxury item...”
(US Dpt of Commerce, 2001)(US Dpt of Commerce, 2001)
– As crucial as the telephoneAs crucial as the telephone• Experts highlight relevance to RehabExperts highlight relevance to Rehab
– Pwd increasingly using Internet for health info Pwd increasingly using Internet for health info & resources& resources
– Application to broad range of patient Application to broad range of patient interventions & outcomesinterventions & outcomes
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Session Participants Session Participants QuestionsQuestions
• Who here is using the Internet in Who here is using the Internet in patient rehabilitation?patient rehabilitation?
• What are you using it for?What are you using it for?
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The Digital Divide for pwdThe Digital Divide for pwd
• Disability status = race / ethnicity Disability status = race / ethnicity • Pwd owning computer: 24% vs. 52% Pwd owning computer: 24% vs. 52% (Kaye, (Kaye,
2000)2000)
• ~25% - 50% less likely to have home ~25% - 50% less likely to have home Internet access Internet access ((ibidibid; Dpt of Commerce, 2001); Dpt of Commerce, 2001)
• Range: 10% to 65% use the InternetRange: 10% to 65% use the Internet– differing disability definitionsdiffering disability definitions– 2006 rate for SCI = 65% 2006 rate for SCI = 65% (Goodman, (Goodman, unpubunpub.).)
• Divide is lessening, but of greater magnitude Divide is lessening, but of greater magnitude for those without for those without (Katz, 2001; Roulstone, 2003)(Katz, 2001; Roulstone, 2003)
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Double Jeopardy Double Jeopardy Phenomenon in SCIPhenomenon in SCI
(Goodman,(Goodman, unpub unpub; Drainoni, Houlihan et al, 2004); Drainoni, Houlihan et al, 2004)
– EducationEducation: : HS (59%) vs Bachelors+ (92%)HS (59%) vs Bachelors+ (92%)
– Race/EthnicityRace/Ethnicity: : White (72%) vs African American & Hispanic White (72%) vs African American & Hispanic populations (40%)populations (40%)
– Employment StatusEmployment Status: : Employed (83%) or Student (89%) vs Employed (83%) or Student (89%) vs Unemployed/retired (60%)Unemployed/retired (60%)
– Marital StatusMarital Status: : Married (74%) vs Single/Divorced/Widowed Married (74%) vs Single/Divorced/Widowed (60%)(60%)
– IncomeIncome: : • <10K <10K 32% 32%• 10K - 25K 63%10K - 25K 63%• 25K+ - 50K 79%25K+ - 50K 79%• 50K+ - 75K 83%50K+ - 75K 83%• 75K+ 91%75K+ 91%
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Barriers to Internet Access Barriers to Internet Access for Ppl w/ SCIfor Ppl w/ SCI
• Other observed barriers:Other observed barriers:– Adaptive equipmentAdaptive equipment
• Assessment needed, product testing, Assessment needed, product testing, expenseexpense
– Inexperience w/ computers &/or Inexperience w/ computers &/or InternetInternet
– More “extroverted” personality typeMore “extroverted” personality type• Research demonstrating thisResearch demonstrating this
– Lack of awareness of available Lack of awareness of available resources & services onlineresources & services online
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Primary Uses of InternetPrimary Uses of Internet
NERSCIC, NERSCIC, 20062006
NCDDR NCDDR Survey, Survey, 20002000
Kaye, 2000Kaye, 2000
Type of UseType of Use SCISCI PwdPwd PwdPwd Gen PopGen Pop
Info SearchInfo Search 65%*65%* 58%58% 63%63% 64%64%
EmailEmail 5959 5252 6767 7575
ShoppingShopping 4343 1616 1717 2323
Disability/Disability/
Health InfoHealth Info4040 38*38* ---- ----
EntertainmentEntertainment 28*28* 3131 39*39* 45*45*
Job SearchJob Search 2525 1818 1616 1717
SchoolSchool ---- 1010 2929 3535
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Trends in Seeking Health Trends in Seeking Health Info OnlineInfo Online
Study by Anderson (2004) of 186 adults: computer-Study by Anderson (2004) of 186 adults: computer-assisted telephone interviews, national random assisted telephone interviews, national random samplesample
• In 2002, 80% of US adults sought health info &/or In 2002, 80% of US adults sought health info &/or services online services online
• Only ~10% e-mailed w/ providers, purchased Only ~10% e-mailed w/ providers, purchased supplies online, managed a chronic disease onlinesupplies online, managed a chronic disease online
• > 50% want to use Internet for clinical purposes> 50% want to use Internet for clinical purposes• Major barriers: potential threats to privacy, Major barriers: potential threats to privacy,
inaccuracy of info, problems in evaluating the inaccuracy of info, problems in evaluating the quality of online info & services, & physician quality of online info & services, & physician disapprovaldisapproval
Outcomes Research Outcomes Research ReviewReview
1.1. Patient Education OutcomesPatient Education Outcomes
2.2. Psychosocial OutcomesPsychosocial Outcomes
3.3. Functional Independence Functional Independence OutcomesOutcomes
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Research Review: Patient Research Review: Patient EducationEducation
• Most studied area; Majority w/ positive resultsMost studied area; Majority w/ positive results• Critical review of acceptability and usefulness Critical review of acceptability and usefulness
of computerized interventions for pwd of computerized interventions for pwd (Krishna et (Krishna et al, 1997)al, 1997)
– All diabetes: lowered blood glucoseAll diabetes: lowered blood glucose• Inpatient breast cancer study w/ controls Inpatient breast cancer study w/ controls
(N=162) (N=162) (Lampe, 2004)(Lampe, 2004)
– Int grp: more home Internet use, helpedInt grp: more home Internet use, helped• Independent skin care promotion for adults Independent skin care promotion for adults
with paraplegia—across-subjects design with paraplegia—across-subjects design (Pellerito, 2003)(Pellerito, 2003)
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Research Review: Research Review: Psychosocial OutcomesPsychosocial Outcomes
• Psychological interventions show Psychological interventions show improved outcomes in non-disabled:improved outcomes in non-disabled:– Hazardous drinking in students, double-blind Hazardous drinking in students, double-blind
RCT (N=104) RCT (N=104) (Kypri et al, 2004)(Kypri et al, 2004)
– Complicated grief randomized waitlist-control Complicated grief randomized waitlist-control trial (N=55) trial (N=55) (Wagner et al, 2006)(Wagner et al, 2006)
• Large treatment effect: intrusion, avoidance, Large treatment effect: intrusion, avoidance, maladaptive behavior, & general psychopathologymaladaptive behavior, & general psychopathology——maintained @ 3 mosmaintained @ 3 mos
• ““Online Therapy” in PsycINFO = 262 Online Therapy” in PsycINFO = 262 entriesentries– ex) ex) Online Therapy: A Therapist’s Guide to Online Therapy: A Therapist’s Guide to
Expanding Your PracticeExpanding Your Practice (Todd, 2006) (Todd, 2006)
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Research Review:Research Review:Functional IndependenceFunctional Independence
• TBI computer knowledge training for improved TBI computer knowledge training for improved daily function--nonexperimental daily function--nonexperimental (Ivanoff, 2002)(Ivanoff, 2002)
• Case-control study of computer-assisted Case-control study of computer-assisted training improved wheelchair mobility on training improved wheelchair mobility on obstacle course obstacle course (Webster et al, 2001)(Webster et al, 2001)
• Model Systems database analysis (N=2926): Model Systems database analysis (N=2926): Internet use significantly improves FIM scores Internet use significantly improves FIM scores for people w/ SCI, after adjusting for factors of for people w/ SCI, after adjusting for factors of race, education, & interference by depression race, education, & interference by depression and pain and pain (Goodman, (Goodman, unpub.unpub.))
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NERSCIC Internet ProjectsNERSCIC Internet Projects
• Pilot MSN TV StudyPilot MSN TV Study (* (*Copyright: Microsoft Corp.)Copyright: Microsoft Corp.)– Houlihan BV, Drainoni M, Warner G, Nesathurai S, Wierbicky J Houlihan BV, Drainoni M, Warner G, Nesathurai S, Wierbicky J
(2003). The impact of Internet access for people with spinal (2003). The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study. cord injuries: a descriptive analysis of a pilot study. Disability Disability and Rehabilitationand Rehabilitation. 25(8): 422-431. 25(8): 422-431
• National SCI Technology SurveyNational SCI Technology Survey– Drainoni M., Houlihan B., Williams S., Vedrani M., Esch D., Drainoni M., Houlihan B., Williams S., Vedrani M., Esch D.,
Lee-Hood E., Weiner C. (2004). Patterns of computer and Lee-Hood E., Weiner C. (2004). Patterns of computer and Internet use by persons with spinal cord injuries and Internet use by persons with spinal cord injuries and relationship to health-related quality of life. relationship to health-related quality of life. Archives of Archives of Physical Medicine and RehabilitationPhysical Medicine and Rehabilitation. 85(Nov): 1872-1879.. 85(Nov): 1872-1879.
– Goodman et al, Goodman et al, unpub.unpub.
• Internet Access Group ProjectInternet Access Group Project– Williams et al, Williams et al, unpub.unpub.
• The SCI Guide OnlineThe SCI Guide Online
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Pilot MSN TV Study: Pilot MSN TV Study: QuestionsQuestions
1.1. How is quality of life [QoL] How is quality of life [QoL] affected by Internet use?affected by Internet use?
2. How do participants describe the 2. How do participants describe the effects of Internet access?effects of Internet access?
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MSN TV Study DescriptionMSN TV Study Description
• Provided first-time Internet access Provided first-time Internet access to people with SCI at home (N=26)to people with SCI at home (N=26)
• MSN TV: like a cable box, with MSN TV: like a cable box, with television as monitortelevision as monitor
• Measured QoL at 3 and 6 monthsMeasured QoL at 3 and 6 months• Analyzed qualitative comments Analyzed qualitative comments
into domains by number and into domains by number and frequencyfrequency
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MSN TV Study Results: MSN TV Study Results: Question 1Question 1
How is QoL affected by Internet use?How is QoL affected by Internet use?• TRENDS seen by each QoL component:TRENDS seen by each QoL component:
1.1. Global healthGlobal health: decline in physical health; : decline in physical health; improvement in mental healthimprovement in mental health
2.2. Social isolationSocial isolation: decrease in contact; : decrease in contact; increase in romantic/sexual relationshipsincrease in romantic/sexual relationships
3.3. Recreation: Recreation: Statistically significant Statistically significant decrease in solitary activities; increase in decrease in solitary activities; increase in social activitiessocial activities
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
How do participants describe the effects of How do participants describe the effects of Internet access [benefits/risks]?Internet access [benefits/risks]?
• Has access to the Internet affected you Has access to the Internet affected you in any way?in any way?1.1. Yes, a lot Yes, a lot 3. No, not much3. No, not much
2.2. Yes, somewhatYes, somewhat 4. No, not at all4. No, not at all
For 1,2,or 3, how has it affected you? For 1,2,or 3, how has it affected you? • Grouped by theme and ranked by Grouped by theme and ranked by
frequencyfrequency
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
• Most important benefits of Most important benefits of Internet use (in order):Internet use (in order):
1.1. Improved Quality of LifeImproved Quality of Life
2.2. Ease of Access to InformationEase of Access to Information
3.3. Social ConnectionSocial Connection
4.4. Quality Information AvailableQuality Information Available
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
1. Improved Quality of Life1. Improved Quality of Life– ““It’s a wonderful pastime. It actually It’s a wonderful pastime. It actually
distracts my mind off some of my distracts my mind off some of my discomfort. I don’t want medication, I’d discomfort. I don’t want medication, I’d rather be distracted. I have spinal cord rather be distracted. I have spinal cord pain, [the Internet] gets myself out of pain, [the Internet] gets myself out of myself.”myself.”
– ““I have more to look forward to, it makes I have more to look forward to, it makes me happier. It’s something different, more me happier. It’s something different, more than just the same old grind. I’ve gotten than just the same old grind. I’ve gotten more interested in what’s going on.”more interested in what’s going on.”
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
2. Ease of Access to Information2. Ease of Access to Information– ““Anything that I’m interested in, I can look Anything that I’m interested in, I can look
up…I don’t get all stressed out. It’s not up…I don’t get all stressed out. It’s not easy for a quadriplegic to flip through the easy for a quadriplegic to flip through the Yellow Pages, so using the [Internet] is Yellow Pages, so using the [Internet] is easier.”easier.”
– ““Whenever I need something I’m not sure Whenever I need something I’m not sure of, it’s right there…It’s just opened up of, it’s right there…It’s just opened up doors…It’s opened my eyes…to things and doors…It’s opened my eyes…to things and places I couldn’t have seen before.”places I couldn’t have seen before.”
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
3. Social Connection3. Social Connection– ““Being able to connect with people, learn Being able to connect with people, learn
through people, make friends. The Web through people, make friends. The Web allows me to trust other people more without allows me to trust other people more without having to see them… Communication, having to see them… Communication, understanding people better. I share more understanding people better. I share more than through other forms [of than through other forms [of communication]. I share intimacy, share communication]. I share intimacy, share problems and losses…It helps unload problems and losses…It helps unload frustration. I’m frustrated with the scars on frustration. I’m frustrated with the scars on my face due to the accident.”my face due to the accident.”
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MSN TV Study Results: MSN TV Study Results: Question 2Question 2
4. Quality Information Available (health, 4. Quality Information Available (health, transportation, employment)transportation, employment)– ““The more I look, the more I find. The more The more I look, the more I find. The more
I find, the more I learn. The more I learn, I find, the more I learn. The more I learn, the “more better” my life becomes…I have the “more better” my life becomes…I have found many sites which send e-mail found many sites which send e-mail newsletter updates which I further review, newsletter updates which I further review, sort them out, and discard and select. Then sort them out, and discard and select. Then I put them to use.”I put them to use.”
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National SCI Technology National SCI Technology SurveySurvey
• Follow up to Pilot MSN TV Study using Follow up to Pilot MSN TV Study using large national sample (N=520)large national sample (N=520)
• Cross-sectional survey re: Cross-sectional survey re: computer/Internet usecomputer/Internet use
• Analyzed relationship between Analyzed relationship between frequency of use and QoL (self-frequency of use and QoL (self-perceived health status, satisfaction perceived health status, satisfaction with life, emotional well-being, social with life, emotional well-being, social integration)integration)
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Tech Survey Users vs. Tech Survey Users vs. NonusersNonusers
• Significant difference by age, race, Significant difference by age, race, education, employment status, education, employment status, incomeincome– Race Race
• Black=29%; Hispanic=32% vs. White=62%Black=29%; Hispanic=32% vs. White=62%
– Educational level Educational level • <8<8thth=9%; <H.S.=35%; H.S.=50%; =9%; <H.S.=35%; H.S.=50%;
Assoc/Bach=79%; Grad=89%Assoc/Bach=79%; Grad=89%
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Technology Survey Technology Survey Results: Q. 2 vs PilotResults: Q. 2 vs Pilot
How is QoL affected How is QoL affected by Internet use?by Internet use?
• Significant correlation between Significant correlation between frequency of Internet use and:frequency of Internet use and:– Self-perceived health statusSelf-perceived health status– Satisfaction with lifeSatisfaction with life– Feeling down/depressed/hopelessFeeling down/depressed/hopeless– Contact with friendsContact with friends– Contact with businessesContact with businesses
• Only business contacts is significant after Only business contacts is significant after adjusting for age, race, etc.adjusting for age, race, etc.
Evidence & Rationale for the Evidence & Rationale for the Internet as a Non-Traditional Internet as a Non-Traditional Treatment ModalityTreatment Modality
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Rationale: Rationale: Internet in RehabilitationInternet in Rehabilitation
• PARTICIPANT IDEASPARTICIPANT IDEAS• Tool for transition from acute to long-term Tool for transition from acute to long-term
rehab, incl. family & caregiversrehab, incl. family & caregivers– Shorter & shorter LOSShorter & shorter LOS– Fills gap in services in transition to communityFills gap in services in transition to community
• Inherently comprehensive in content & Inherently comprehensive in content & application application
• Can be integrated across the spectrum of Can be integrated across the spectrum of rehab activities rehab activities – ex. Educational DVDs reviewed in room by ex. Educational DVDs reviewed in room by
patient in between therapy sessionspatient in between therapy sessions
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Rationale Rationale (Cont’d)(Cont’d)
• Interactive, autonomous nature Interactive, autonomous nature more effective than conventional more effective than conventional modalities in promoting learning modalities in promoting learning (Bitter, 2005; Schwinn & Ozanian, 2005)(Bitter, 2005; Schwinn & Ozanian, 2005)
• The readiness factor—can search The readiness factor—can search out info when ready to receive itout info when ready to receive it
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Educate & Empower Educate & Empower Individuals in RehabIndividuals in Rehab
• ““Knowledge is power”Knowledge is power”• Social justice: bridge the Digital DivideSocial justice: bridge the Digital Divide• Provide access via online training re: info & Provide access via online training re: info &
resources otherwise hard to attain due to resources otherwise hard to attain due to marginalized status marginalized status (Vesmarovich, 2000)(Vesmarovich, 2000)
• Ex: OT trained African American community to Ex: OT trained African American community to use Internet to obtain health info; provided use Internet to obtain health info; provided ongoing TAongoing TA– significantly increased health-related empowerment significantly increased health-related empowerment
(Suarez-Balcazar, 2005)(Suarez-Balcazar, 2005)
• Gives patient means to educate others: family, Gives patient means to educate others: family, caregivers, friends, etc.caregivers, friends, etc.
• Other empowerment applications: self-care, Other empowerment applications: self-care, advocacy, disease mngmt, & much more!advocacy, disease mngmt, & much more!
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Advancing Treatment Advancing Treatment Goals w/ the InternetGoals w/ the Internet• Disability educationDisability education: self-guided & through : self-guided & through
identified websitesidentified websites• Assistive technology & devicesAssistive technology & devices:: assessment, assessment,
training, “test drives”training, “test drives”• Vocational trainingVocational training: websites for job-seeking, job : websites for job-seeking, job
databases, computer/ Internet skill developmentdatabases, computer/ Internet skill development• Life skills trainingLife skills training: independence in daily living : independence in daily living
tasks (shopping, banking, bill paying, etc.); tasks (shopping, banking, bill paying, etc.); ECUsECUs
• Social support & communicationSocial support & communication: email, : email, message boards, peer supportmessage boards, peer support
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Research: Vocational Research: Vocational TrainingTraining
• Computer & Internet becoming Computer & Internet becoming necessary tools in the workplace necessary tools in the workplace (Wallace, (Wallace, 2004)2004)
• For people w/ SCI, computer skills and For people w/ SCI, computer skills and training are significant predictors of training are significant predictors of employment and higher earnings employment and higher earnings (Gilbride, (Gilbride, 2000; Pell et al, 1997; Krueger et al, 1995)2000; Pell et al, 1997; Krueger et al, 1995)
• Internet skills open up option of Internet skills open up option of telework for pwd telework for pwd (Bricout, 2004)(Bricout, 2004)
• 62% of ppl w/ SCI wanted more work-62% of ppl w/ SCI wanted more work-related info during acute rehab related info during acute rehab (Wehman (Wehman et al, 2000)et al, 2000)
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Research: Research: Social Support & Social Support & CommunicationCommunication
• Lowers social isolation & depression:Lowers social isolation & depression:– Small RCT--Internet access & training w/ older Small RCT--Internet access & training w/ older
adults; trends only adults; trends only (White et al, 2002) (White et al, 2002)
– Breast cancer—medical info & online support Breast cancer—medical info & online support (Fogel et al, 2002; Owen et al, 2004)(Fogel et al, 2002; Owen et al, 2004)
– Youth w/ disabilities—online support group Youth w/ disabilities—online support group (Burgstahler & Cronheim, 2001)(Burgstahler & Cronheim, 2001)
• Increases communication:Increases communication:– 11-yr cohort study of patients w/ locked-in 11-yr cohort study of patients w/ locked-in
syndrome—w/ family/friends syndrome—w/ family/friends (Doble et al, 2003) (Doble et al, 2003)
– Population-based—email, etc. increased Population-based—email, etc. increased telephone use, social interaction, & face-to-telephone use, social interaction, & face-to-face friendships face friendships (Katz et al, 2001) (Katz et al, 2001)
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Role of Rehabilitation Role of Rehabilitation ProfessionalProfessional
• Rehabilitation employs holistic paradigm Rehabilitation employs holistic paradigm to treatment of the individual—good fit to treatment of the individual—good fit with Internet’s broad applicabilitywith Internet’s broad applicability
• Internet training in group setting Internet training in group setting facilitates adjustment to disability & facilitates adjustment to disability & peer supportpeer support
• Occupational therapist: assessment of Occupational therapist: assessment of assistive technology needs & assistive technology needs & adjustment throughout rehabadjustment throughout rehab
• Integrate Internet technologies to Integrate Internet technologies to provide better treatmentprovide better treatment
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Role of Rehab Profession Role of Rehab Profession (Cont’d)(Cont’d)
• ““The medical & health care communities The medical & health care communities should establish approaches that should establish approaches that empower consumers to use the Internet empower consumers to use the Internet as part of a total health care strategy, as part of a total health care strategy, rather than simply warn them about rather than simply warn them about Internet hazards. The statuses of social Internet hazards. The statuses of social workers, health educators, & related workers, health educators, & related health professionals may be bolstered health professionals may be bolstered as they develop ways to empower & as they develop ways to empower & support consumers' Internet utilization.” support consumers' Internet utilization.” (Oravec, 2001)(Oravec, 2001)
Translating Research into Translating Research into PracticePractice
Using the Internet as a Treatment Using the Internet as a Treatment Modality During Acute Modality During Acute
RehabilitationRehabilitation
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Where is the Internet Where is the Internet Being Used for Rehab?Being Used for Rehab?
• Outpatient ExamplesOutpatient Examples– Palo Alto, CA & Durham U Med Ctr (NC): Palo Alto, CA & Durham U Med Ctr (NC):
older adultsolder adults– U of Wash (Seattle): all disabilities, U of Wash (Seattle): all disabilities,
empowermentempowerment• Inpatient ExamplesInpatient Examples
– U of Iowa: all inpatientsU of Iowa: all inpatients– Lubben Rehab Ctr: breast cancer--educationLubben Rehab Ctr: breast cancer--education– Detroit: SCI--skin careDetroit: SCI--skin care
• Research review in Telehealth: SCI Research review in Telehealth: SCI (Bloemen-Vrencken et al, 2005) & (Bloemen-Vrencken et al, 2005) & Chronic med. Chronic med. conditionsconditions (Liss & Gluedkauf, 2002) (Liss & Gluedkauf, 2002)
• OTHER EX.:OTHER EX.: Participant ExperiencesParticipant Experiences
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Absence of Standardized Absence of Standardized Use in RehabUse in Rehab
• Telehealth applications, as notedTelehealth applications, as noted• Computer & Internet availability, Computer & Internet availability,
but no formal Internet training but no formal Internet training provided inpatient or outpatientprovided inpatient or outpatient
• Despite evidence, expert Despite evidence, expert consensus, & societal trendsconsensus, & societal trends
• Thus, the Internet Access Group Thus, the Internet Access Group was bornwas born
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Internet Access Internet Access Group ProjectGroup Project
• Provide Internet training to newly injured Provide Internet training to newly injured patients with SCI during acute patients with SCI during acute rehabilitation.rehabilitation.
• Develop a curriculum for patient Develop a curriculum for patient education.education.
• Weekly 90-minute group lead by OT.Weekly 90-minute group lead by OT.• Provide Internet access in patients Provide Internet access in patients
rooms.rooms.
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Components of Components of Internet AccessInternet Access
• EducationEducation• AE / AT Training and MasteryAE / AT Training and Mastery• Home / Office ModificationHome / Office Modification• Increased independence with life Increased independence with life
taskstasks
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Group ProcessGroup Process
• Weekly 90-minute GroupWeekly 90-minute Group• 4-5 Patients4-5 Patients• Led by OT StaffLed by OT Staff• Learning ModulesLearning Modules• Open LabOpen Lab• AssessmentAssessment
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Adaptive Equipment and Adaptive Equipment and Assistive TechnologyAssistive Technology
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Patient EducationPatient Education
• Weekly Curriculum Weekly Curriculum – Anatomy of SCI and current research Anatomy of SCI and current research
projectsprojects– Secondary medical conditions Secondary medical conditions – Life management tasksLife management tasks– Sports, recreation, and leisureSports, recreation, and leisure– Christopher Reeve Paralysis Resource Christopher Reeve Paralysis Resource
Center and NSCIA website reviewCenter and NSCIA website review
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Life Management SkillsLife Management Skills
• Grocery ShoppingGrocery Shopping• BankingBanking• EducationEducation• EmploymentEmployment• CommunicationCommunication
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ImplementationImplementation
• EquipmentEquipment– Computers with Internet access, work Computers with Internet access, work
stations, assistive technology, stations, assistive technology, adaptive equipmentadaptive equipment
• StaffingStaffing– One OT with SCI experience and 1-2 One OT with SCI experience and 1-2
rehab aides or volunteersrehab aides or volunteers
• SchedulingScheduling
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Occupational TherapyOccupational Therapy
““Occupational therapy is skilled treatment Occupational therapy is skilled treatment that helps individuals achieve that helps individuals achieve independence in all facets of their lives. independence in all facets of their lives. Occupational therapy assists people in Occupational therapy assists people in developing the “skills for the job of developing the “skills for the job of living” necessary for independent and living” necessary for independent and satisfying lives.”satisfying lives.”
The American Occupational Therapy AssociationThe American Occupational Therapy Association
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Training Group Implementation Training Group Implementation ConsiderationsConsiderations
• Include goals specific to AT use & Include goals specific to AT use & computer/Internet access, for PT and RT computer/Internet access, for PT and RT as well as well
• should be included weekly in the should be included weekly in the interdisciplinary team scheduling interdisciplinary team scheduling adhered to by all rehab personneladhered to by all rehab personnel
• Develop & communicate to patients Develop & communicate to patients organizational policy on misuse of the organizational policy on misuse of the InternetInternet
• May need to budget for maintenance May need to budget for maintenance costs—much lower if use facility’s costs—much lower if use facility’s network.network.
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Gaining Access to the Gaining Access to the Computer & InternetComputer & Internet
• For low-income patients, look for grants at: For low-income patients, look for grants at: www.fundsnetservices.com; www.fundsnetservices.com; http://fundingopps.cos.com; & http://fundingopps.cos.com; & http://fdncenter.org http://fdncenter.org “Searchzone”) “Searchzone”)
• The Cristina Foundation (www.cristina.org) The Cristina Foundation (www.cristina.org) has community partners that distribute free has community partners that distribute free refurbished computers for consumers refurbished computers for consumers
• Look for local resources (libraries, computer Look for local resources (libraries, computer centers for disabled)centers for disabled)– Alliance for Technology Access Alliance for Technology Access
www.ataccess.orgwww.ataccess.org
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COMING SOON! COMING SOON! The SCI GuideThe SCI Guide
• Goal: Create a comprehensive guide to Goal: Create a comprehensive guide to free, quality, peer-reviewed resources free, quality, peer-reviewed resources accessed directly online from anywhereaccessed directly online from anywhere
• Developed disability-specific rating Developed disability-specific rating system for team of reviewers w/ SCIsystem for team of reviewers w/ SCI
• User-friendly w/ directions to navigate User-friendly w/ directions to navigate site & best site features, esp. for newly site & best site features, esp. for newly injured, technophobes, & busy peopleinjured, technophobes, & busy people
• Interactive: users post ratings, suggest Interactive: users post ratings, suggest new sitesnew sites
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Top Websites Top Websites for the Newly Injured*for the Newly Injured*
• NSCIA: New InjuryNSCIA: New Injury www.spinalcord.org/html/newinjurywww.spinalcord.org/html/newinjury
• Craig Hospital:Craig Hospital: www.craighospital.orgwww.craighospital.org “ “Spinal Cord Injury” Spinal Cord Injury” ”Educational Brochures” ”Educational Brochures”
• SCI-INFO-PAGES:SCI-INFO-PAGES: www.sci-info-pages.comwww.sci-info-pages.com Quadriplegic, Paraplegic, & Caregiver ResourcesQuadriplegic, Paraplegic, & Caregiver Resources
• Christopher Reeve Foundation:Christopher Reeve Foundation: New Paralysis New Paralysis Resource Kit Resource Kit www.christopherreeve.orgwww.christopherreeve.org
• AARP: Home DesignAARP: Home Design www.aarp.org/life/homedesignwww.aarp.org/life/homedesign
• Care Cure Community:Care Cure Community: http://sci.rutgers.eduhttp://sci.rutgers.edu
*Copyright 2006: NERSCIC
Need for Further ResearchNeed for Further Research
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Future Directions for Future Directions for Research & DevelopmentResearch & Development
• ID/develop outcome measurements to study ID/develop outcome measurements to study Internet’s unique impact: life skills, Internet’s unique impact: life skills, computer/Internet skills, empowerment, quality computer/Internet skills, empowerment, quality of leisure time, online learningof leisure time, online learning
• Focused intervention studies, in rehab settings, Focused intervention studies, in rehab settings, with both broad & specific populations, for with both broad & specific populations, for evidence-based practiceevidence-based practice
• Develop standards for online counseling, peer Develop standards for online counseling, peer support groups, peer mentoring, etc.support groups, peer mentoring, etc.
• Develop curriculum, guides, & other products to Develop curriculum, guides, & other products to assist consumers in using the Internetassist consumers in using the Internet
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Presentation Content Made Presentation Content Made Possible with Support from:Possible with Support from:
• National Institute of Disability & National Institute of Disability & Rehabilitation Research Model SCI Rehabilitation Research Model SCI Systems GrantSystems Grant
(Grant # H133N000024)(Grant # H133N000024)
• Christopher Reeve Foundation Christopher Reeve Foundation Quality of Life GrantsQuality of Life Grants
• Microsoft Corporation, Inc.Microsoft Corporation, Inc.• Boston Medical CenterBoston Medical Center
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Final QuestionsFinal Questions
• What should priority areas of What should priority areas of research be?research be?
• What new ways could you bring the What new ways could you bring the Internet into your rehab setting?Internet into your rehab setting?
• What barriers exist in your setting?What barriers exist in your setting?• Questions for us?Questions for us?