Harnessing the Power of the Information Age: The Internet’s Unique Application New England Regional Spinal Cord Injury Center at Boston Medical Center.

Slides:



Advertisements
Similar presentations
Guideposts --Quality Work-Based Learning Programs
Advertisements

HEARTH (Holistic Environmental Assessment for Return to Home) By Melissa Chang, Paige Hays, Erin Henshaw, Carrie Pommeranz, and Jackie Webel Opening the.
Training to care for people with dementia Dementia Training Partner logo here Training support Skills development Competency Assessment Scholarships Education.
The Internet as a Treatment Modality New England Regional Spinal Cord Injury Center at Boston Medical Center ASIA-ISCoS Meeting Boston, MA June 27, 2006.
Development of the Consumer Professional Partnership Program (CPPP) Thilo Kroll NRH CHDR Steve Towle SCI Network RRTC on SCI: Promoting Health and Preventing.
Robin L. Donaldson May 5, 2010 Prospectus Defense Florida State University College of Communication and Information.
New England Regional Spinal Cord Injury Center Overview of Past Research and Current Research Opportunities March 9, 2006.
LAKESIDE WELLNESS PROGRAM - PBHCI LEARNING COMMUNITY REGION #3 ORLANDO, FLORIDA, RUTH CRUZ- DIAZ, BSN EXT
Laurie Glader, MD Emily Davidson, MD, MPH Opening Doors for Children with Disabilities and Special Health Care Needs Project Adventure: Lessons Learned.
PROFESSIONAL NURSING PRACTICE
The Standards of Practice for a Tobacco Treatment Specialist (TTS) Gaylene Mooney, M.Ed., RRT-NPS, CTTS Program Director, Respiratory Therapy San Joaquin.
© University of New Hampshire – Northeast Passage Recreation for those ageing with and into disability CACL Living Well in Our Communities:
2.11 Conduct Medication Management University Medical Center Health System Lubbock, TX Jason Mills, PharmD, RPh Assistant Director of Pharmacy.
The Physical therapist’s Role in Schools
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins Chapter 10 Assessing Environment: Home, Community, and Workplace Access and Safety.
The Influence of Transportation and Access on the Well-Being of Older Adults William A. Satariano, Ph.D., MPH School of Public Health University of California,
ETIM-1 CSE 5810 CSE5810: Intro to Biomedical Informatics Mobile Computing to Impact Patient Health and Data Exchange and Statistical Analysis Presenter:
DR EBTISSAM AL-MADI Consumer Informatics, nursing informatics, public health informatics.
Healthcare for London is part of Commissioning Support for London – an organisation providing clinical and business support to London’s NHS. Healthcare.
Bridging the Gap between Health Promotion Theory and Care for Chronic Illness Empowering for Health Care Management at Home C. L. McWilliam, MScN, EdD.
The Power of Clinical Strategies to Reduce Costs: The Unexploited Opportunity for States as Healthcare Purchasers Bruce Amundson, MD President Community.
Intervention with the Elderly Chapter 8. Background The elderly population is growing in industrialized countries. This is due to: – Improved medical.
Making the Connection: Making the Connection: CAB Internet Assessment Project New England Regional Spinal Cord Injury Boston Medical Center.
+ Module Four: Patient/Family Education and Self-Management At the end of this module, the participant will be able to: Describe three learning needs of.
New England Regional Spinal Cord Injury Center (NERSCIC) At Boston Medical Center & Gaylord Hospital …in affiliation with Northeast Rehabilitation Hospital.
Update on Impetus services Advice Services Network 21 May
Presented by Vicki M. Young, PhD October 19,
20 countries Over 5000 offline Europeans more then 500 telecentres.
Virtual Townhall Meeting: Reducing the Risk of Spinal Cord Injuries for People with SCI.
CHALLENGE CENTER Filling the Gap in the Continuum of Care.
Long-Term Outcome > TBI: Three Models Mary Pepping, Ph.D., ABPP-CN Professor, Dept. of Rehabilitation Medicine University of Washington Medical Center.
Guidelines for Establishing Medical Rehabilitation in Developing Countries Martin Grabois, M.D. Professor and Chairman Baylor College of Medicine Department.
Nursing Care Makes A Difference The Application of Omaha Documentation System on Clients with Mental Illness.
Copyright  West Institute Evidence-Based Practices ILLNESS MANAGEMENT AND RECOVERY EVIDENCE-BASEDPRACTICE An Introduction.
Appendix B: Restorative Care Training Presentation Audience: All Staff Release date: December
Perspectives on the Age Wave: Key Issues, Solutions, and Opportunities Robyn Golden, LCSW Director of Older Adult Programs Rush University Medical Center.
Innovative Solutions to Systemic Trends in Delivery of Complex Wheelchair & Seating Systems.
Outline  The Evidence  Program overview  Local Initiatives.
© The Hygenic Corporation The Active Aging Toolkit For Healthcare Providers Promoting Physical Activity in Older Adults.
The effects of exercise and a wellness program on participation and secondary conditions on individuals with mobility impairments By: Angie Monzin.
Cynthia Baur, Ph.D. Senior Advisor, Health Literacy August 23, 2011 The National Action Plan to Improve Health Literacy Office of the Director Office of.
9/19/ WCET Online Services Audit Tool - WCET/MnSCU Confidential WCET/MnSCU Audit Tool—Round 2 eStudent Services Committee Meeting June 24, 2004 Pat.
The Needs of Pediatric Practices for Policy and Procedures to Facilitate Youth with Special Health Care Needs (YSHCN) Transition to Adulthood. Patience.
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins Chapter 4 Treatment Settings and Therapeutic Programs.
Chapter 10 Gerontological Nursing Practice Settings.
Introduction: Medical Psychology and Border Areas
1 Care for Injection Drug Users (IDUs) with HIV HAIVN Havard Medical School AIDS Initiative in Vietnam.
Copyright © 2006 Elsevier, Inc. All rights reserved Chapter 15 The Health Care Organization and Patterns of Nursing Care Delivery.
DoD Joint Service Conference A Call To Action. Purpose of Working Group  Identify issues families are facing  Identify support systems available to.
Mike Hindmarsh Improving Chronic Illness Care California Chronic Care Learning Communities Initiative Collaborative February 2, 2004 Oakland, CA Clinical.
Nicheprogram.org NICHE Nurses Improving Care for Healthsystem Elders An Introduction to NICHE © 2015 NICHE All Rights Reserved.
Panhandle Independent Living Center “Empowering Youth with Disabilities to Say YES I Can!”
The Occupational Therapist and Huntington’s Disease
Today.. Overview of my realist synthesis Reflections on the process
Inga Skestere, chairperson of “Latvian Movement for Independent living” phone ,
Striving Towards Excellence in Comprehensive Care: What do Children Need? July 10, 2007 Christopher A. Kus, M.D., M.P.H.
System of Shared Care (COPD) Learning Session 3. 2  Share ideas  Billing  Next steps in collaborating with services in your community  Sustainment.
Supported Housing: Research and Best Practices The Transformation Center Boston, MA. Compiled by the Supported Housing Study Group at Boston University.
Building Community to Support Aging Maryland Commission on Aging September 10, 2014 Candace Baldwin Director of Strategy, Aging in Community.
“My Life, My Health” The Stanford University Chronic Disease Self-Management Program.
Stanford Chronic Disease Self-Management Program.
Overview of Education in Health Care
+ Interdisciplinary Care in Pediatric Chronic Pain Emily Law, PhD Assistant Professor Department of Anesthesiology & Pain Medicine University of Washington.
Enabling independence in older adults with visual impairments through digital technology Author: Carrie Sant (Rehabilitation Officer - Specialising in.
Module 2: Program Development in Community-based Practice
“CareerGuide for Schools”
Community Step Up Program
Certified Professional Patient Navigator CPPN
Home visiting evaluation
Jamie Bargeman Research Unlocked 20th November 2018
Presentation transcript:

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 September 28, 2006

Copyright 2006, NERSCIC Reproduction by permission only 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.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.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.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.

Copyright 2006, NERSCIC Reproduction by permission only Outline of Presentation Background & Relevant ResearchBackground & Relevant Research Evidence & Rational for Use of the Internet as a Non-Traditional Treatment ModalityEvidence & Rational for Use of the Internet as a Non-Traditional Treatment Modality Translating Research into PracticeTranslating Research into Practice Need for Further ResearchNeed for Further Research **With discussion time throughout

Background & Relevant Research

Copyright 2006, NERSCIC Reproduction by permission only Introduction: Why the Internet? Growing scope of independence for people with disabilities (pwd)Growing scope of independence for people with disabilities (pwd) Internet access crucial to participation & functional independence in modern societyInternet 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 RehabExperts highlight relevance to Rehab –Pwd increasingly using Internet for health info & resources –Application to broad range of patient interventions & outcomes

Copyright 2006, NERSCIC Reproduction by permission only Session Participants Questions Who here is using the Internet in patient rehabilitation?Who here is using the Internet in patient rehabilitation? What are you using it for?What are you using it for?

Copyright 2006, NERSCIC Reproduction by permission only The Digital Divide for pwd Disability status = race / ethnicityDisability status = race / ethnicity Pwd owning computer: 24% vs. 52% (Kaye, 2000)Pwd owning computer: 24% vs. 52% (Kaye, 2000) ~25% - 50% less likely to have home Internet access (ibid; Dpt of Commerce, 2001)~25% - 50% less likely to have home Internet access (ibid; Dpt of Commerce, 2001) Range: 10% to 65% use the InternetRange: 10% to 65% use the Internet –differing disability definitions –2006 rate for SCI = 65% (Goodman, unpub.) Divide is lessening, but of greater magnitude for those without (Katz, 2001; Roulstone, 2003)Divide is lessening, but of greater magnitude for those without (Katz, 2001; Roulstone, 2003)

Copyright 2006, NERSCIC Reproduction by permission only 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 32% 10K - 25K 63%10K - 25K 63% 25K+ - 50K 79%25K+ - 50K 79% 50K+ - 75K 83%50K+ - 75K 83% 75K+ 91%75K+ 91%

Copyright 2006, NERSCIC Reproduction by permission only Barriers to Internet Access for Ppl w/ SCI Other observed barriers:Other observed barriers: –Adaptive equipment Assessment needed, product testing, expenseAssessment needed, product testing, expense –Inexperience w/ computers &/or Internet –More “extroverted” personality type Research demonstrating thisResearch demonstrating this –Lack of awareness of available resources & services online

Copyright 2006, NERSCIC Reproduction by permission only Primary Uses of Internet NERSCIC, 2006 NCDDR Survey, 2000 Kaye, 2000 Type of Use SCIPwdPwd Gen Pop Info Search 65%* 65%* 58% 58% 63% 63% 64% 64% Shopping Disability/ Health Info 40 38* 38*---- Entertainmen t 28* 28*3139*45* Job Search School

Copyright 2006, NERSCIC Reproduction by permission only 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 onlineIn 2002, 80% of US adults sought health info &/or services online Only ~10% ed w/ providers, purchased supplies online, managed a chronic disease onlineOnly ~10% ed w/ providers, purchased supplies 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, inaccuracy of info, problems in evaluating the quality of online info & services, & physician disapprovalMajor barriers: potential threats to privacy, inaccuracy of info, problems in evaluating the quality of online info & services, & physician disapproval

Outcomes Research Review 1.Patient Education Outcomes 2.Psychosocial Outcomes 3.Functional Independence Outcomes

Copyright 2006, NERSCIC Reproduction by permission only Research Review: Patient Education Most studied area; Majority w/ positive resultsMost studied area; Majority w/ positive results Critical review of acceptability and usefulness of computerized interventions for pwd (Krishna et al, 1997)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)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—across- subjects design (Pellerito, 2003)Independent skin care promotion for adults with paraplegia—across- subjects design (Pellerito, 2003)

Copyright 2006, NERSCIC Reproduction by permission only Research Review: Psychosocial Outcomes Psychological interventions show improved outcomes in non-disabled:Psychological interventions show improved outcomes in non-disabled: –Hazardous drinking in students, double- blind RCT (N=104) (Kypri et al, 2004) –Complicated grief randomized waitlist- control trial (N=55) (Wagner et al, 2006) Large treatment effect: intrusion, avoidance, maladaptive behavior, & general 3 mosLarge treatment effect: intrusion, avoidance, maladaptive behavior, & general 3 mos “Online Therapy” in PsycINFO = 262 entries“Online Therapy” in PsycINFO = 262 entries –ex) Online Therapy: A Therapist’s Guide to Expanding Your Practice (Todd, 2006)

Copyright 2006, NERSCIC Reproduction by permission only Research Review: Functional Independence TBI computer knowledge training for improved daily function--nonexperimental (Ivanoff, 2002)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)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.)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.)

Copyright 2006, NERSCIC Reproduction by permission only NERSCIC Internet Projects Pilot MSN TV Study (* Copyright: Microsoft Corp.)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): National SCI Technology SurveyNational 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): –Goodman et al, unpub. Internet Access Group ProjectInternet Access Group Project –Williams et al, unpub. The SCI Guide OnlineThe SCI Guide Online

Copyright 2006, NERSCIC Reproduction by permission only 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?

Copyright 2006, NERSCIC Reproduction by permission only MSN TV Study Description Provided first-time Internet access to people with SCI at home (N=26)Provided first-time Internet access to people with SCI at home (N=26) MSN TV: like a cable box, with television as monitorMSN TV: like a cable box, with television as monitor Measured QoL at 3 and 6 monthsMeasured QoL at 3 and 6 months Analyzed qualitative comments into domains by number and frequencyAnalyzed qualitative comments into domains by number and frequency

Copyright 2006, NERSCIC Reproduction by permission only MSN TV Study Results: Question 1 How is QoL affected by Internet use? TRENDS seen by each QoL component: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

Copyright 2006, NERSCIC Reproduction by permission only 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?Has access to the Internet affected you in any way? 1.Yes, a lot 3. No, not much 2.Yes, somewhat4. No, not at all For 1,2,or 3, how has it affected you? Grouped by theme and ranked by frequencyGrouped by theme and ranked by frequency

Copyright 2006, NERSCIC Reproduction by permission only MSN TV Study Results: Question 2 Most important benefits of Internet use (in order):Most important benefits of Internet use (in order): 1.Improved Quality of Life 2.Ease of Access to Information 3.Social Connection 4.Quality Information Available

Copyright 2006, NERSCIC Reproduction by permission only 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 on.”

Copyright 2006, NERSCIC Reproduction by permission only 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.”

Copyright 2006, NERSCIC Reproduction by permission only 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.”

Copyright 2006, NERSCIC Reproduction by permission only 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 newsletter updates which I further review, sort them out, and discard and select. Then I put them to use.”

Copyright 2006, NERSCIC Reproduction by permission only National SCI Technology Survey Follow up to Pilot MSN TV Study using large national sample (N=520)Follow up to Pilot MSN TV Study using large national sample (N=520) Cross-sectional survey re: computer/Internet useCross-sectional survey re: computer/Internet use Analyzed relationship between frequency of use and QoL (self- perceived health status, satisfaction with life, emotional well-being, social integration)Analyzed relationship between frequency of use and QoL (self- perceived health status, satisfaction with life, emotional well-being, social integration)

Copyright 2006, NERSCIC Reproduction by permission only Tech Survey Users vs. Nonusers Significant difference by age, race, education, employment status, incomeSignificant difference by age, race, education, employment status, income –Race Black=29%; Hispanic=32% vs. White=62%Black=29%; Hispanic=32% vs. White=62% –Educational level <8 th =9%; <H.S.=35%; H.S.=50%; Assoc/Bach=79%; Grad=89%<8 th =9%; <H.S.=35%; H.S.=50%; Assoc/Bach=79%; Grad=89%

Copyright 2006, NERSCIC Reproduction by permission only Technology Survey Results: Q. 2 vs Pilot How is QoL affected by Internet use? Significant correlation between frequency of Internet use and: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 after adjusting for age, race, etc.Only business contacts is significant after adjusting for age, race, etc.

Evidence & Rationale for the Internet as a Non- Traditional Treatment Modality

Copyright 2006, NERSCIC Reproduction by permission only Rationale: Internet in Rehabilitation PARTICIPANT IDEASPARTICIPANT IDEAS Tool for transition from acute to long- term rehab, incl. family & caregiversTool for transition from acute to long- term rehab, incl. family & caregivers –Shorter & shorter LOS –Fills gap in services in transition to community Inherently comprehensive in content & applicationInherently comprehensive in content & application Can be integrated across the spectrum of rehab activitiesCan be integrated across the spectrum of rehab activities –ex. Educational DVDs reviewed in room by patient in between therapy sessions

Copyright 2006, NERSCIC Reproduction by permission only Rationale (Cont’d) Interactive, autonomous nature more effective than conventional modalities in promoting learning (Bitter, 2005; Schwinn & Ozanian, 2005)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 itThe readiness factor—can search out info when ready to receive it

Copyright 2006, NERSCIC Reproduction by permission only Educate & Empower Individuals 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 & resources otherwise hard to attain due to marginalized status (Vesmarovich, 2000)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 TAEx: 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.Gives patient means to educate others: family, caregivers, friends, etc. Other empowerment applications: self-care, advocacy, disease mngmt, & much more!Other empowerment applications: self-care, advocacy, disease mngmt, & much more!

Copyright 2006, NERSCIC Reproduction by permission only Advancing Treatment Goals w/ the Internet Disability education: self-guided & through identified websitesDisability education: self-guided & through identified websites Assistive technology & devices: assessment, training, “test drives”Assistive technology & devices: assessment, training, “test drives” Vocational training: websites for job- seeking, job databases, computer/ Internet skill developmentVocational training: websites for job- seeking, job databases, computer/ Internet skill development Life skills training: independence in daily living tasks (shopping, banking, bill paying, etc.); ECUsLife skills training: independence in daily living tasks (shopping, banking, bill paying, etc.); ECUs Social support & communication: , message boards, peer supportSocial support & communication: , message boards, peer support

Copyright 2006, NERSCIC Reproduction by permission only Research: Vocational Training Computer & Internet becoming necessary tools in the workplace (Wallace, 2004)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)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) Internet skills open up option of telework for pwd (Bricout, 2004) 62% of ppl w/ SCI wanted more work- related info during acute rehab (Wehman et al, 2000)62% of ppl w/ SCI wanted more work- related info during acute rehab (Wehman et al, 2000)

Copyright 2006, NERSCIC Reproduction by permission only Research: Social Support & Communication Lowers social isolation & depression: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:Increases communication: –11-yr cohort study of patients w/ locked-in syndrome—w/ family/friends (Doble et al, 2003) –Population-based— , etc. increased telephone use, social interaction, & face- to-face friendships (Katz et al, 2001)

Copyright 2006, NERSCIC Reproduction by permission only Role of Rehabilitation Professional Rehabilitation employs holistic paradigm to treatment of the individual—good fit with Internet’s broad applicabilityRehabilitation 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 supportInternet training in group setting facilitates adjustment to disability & peer support Occupational therapist: assessment of assistive technology needs & adjustment throughout rehabOccupational therapist: assessment of assistive technology needs & adjustment throughout rehab Integrate Internet technologies to provide better treatmentIntegrate Internet technologies to provide better treatment

Copyright 2006, NERSCIC Reproduction by permission only 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' Internet utilization.” (Oravec, 2001)“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' Internet utilization.” (Oravec, 2001)

Translating Research into Practice Using the Internet as a Treatment Modality During Acute Rehabilitation

Copyright 2006, NERSCIC Reproduction by permission only Where is the Internet Being Used for Rehab? Outpatient ExamplesOutpatient Examples –Palo Alto, CA & Durham U Med Ctr (NC): older adults –U of Wash (Seattle): all disabilities, empowerment Inpatient ExamplesInpatient 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)Research review in Telehealth: SCI (Bloemen-Vrencken et al, 2005) & Chronic med. conditions (Liss & Gluedkauf, 2002) OTHER EX.: Participant ExperiencesOTHER EX.: Participant Experiences

Copyright 2006, NERSCIC Reproduction by permission only Absence of Standardized Use in Rehab Telehealth applications, as notedTelehealth applications, as noted Computer & Internet availability, but no formal Internet training provided inpatient or outpatientComputer & Internet availability, but no formal Internet training provided inpatient or outpatient Despite evidence, expert consensus, & societal trendsDespite evidence, expert consensus, & societal trends Thus, the Internet Access Group was bornThus, the Internet Access Group was born

Copyright 2006, NERSCIC Reproduction by permission only Internet Access Group Project Provide Internet training to newly injured patients with SCI during acute rehabilitation.Provide Internet training to newly injured patients with SCI during acute rehabilitation. Develop a curriculum for patient education.Develop a curriculum for patient education. Weekly 90-minute group lead by OT.Weekly 90-minute group lead by OT. Provide Internet access in patients rooms.Provide Internet access in patients rooms.

Copyright 2006, NERSCIC Reproduction by permission only Components of Internet Access EducationEducation AE / AT Training and MasteryAE / AT Training and Mastery Home / Office ModificationHome / Office Modification Increased independence with life tasksIncreased independence with life tasks

Copyright 2006, NERSCIC Reproduction by permission only Group 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

Copyright 2006, NERSCIC Reproduction by permission only

Adaptive Equipment and Assistive Technology

Copyright 2006, NERSCIC Reproduction by permission only Patient Education Weekly CurriculumWeekly 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

Copyright 2006, NERSCIC Reproduction by permission only

Life Management Skills Grocery ShoppingGrocery Shopping BankingBanking EducationEducation EmploymentEmployment CommunicationCommunication

Copyright 2006, NERSCIC Reproduction by permission only

Implementation EquipmentEquipment –Computers with Internet access, work stations, assistive technology, adaptive equipment StaffingStaffing –One OT with SCI experience and 1- 2 rehab aides or volunteers SchedulingScheduling

Copyright 2006, NERSCIC Reproduction by permission only 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

Copyright 2006, NERSCIC Reproduction by permission only Training Group Implementation Considerations Include goals specific to AT use & computer/Internet access, for PT and RT as wellInclude 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 personnelshould be included weekly in the interdisciplinary team scheduling adhered to by all rehab personnel Develop & communicate to patients organizational policy on misuse of the InternetDevelop & communicate to patients organizational policy on misuse of the Internet May need to budget for maintenance costs—much lower if use facility’s network.May need to budget for maintenance costs—much lower if use facility’s network.

Copyright 2006, NERSCIC Reproduction by permission only Gaining Access to the Computer & Internet For low-income patients, look for grants at: &  “Searchzone”)For low-income patients, look for grants at: &  “Searchzone”) The Cristina Foundation ( has community partners that distribute free refurbished computers for consumersThe Cristina Foundation ( has community partners that distribute free refurbished computers for consumers Look for local resources (libraries, computer centers for disabled)Look for local resources (libraries, computer centers for disabled) –Alliance for Technology Access

Copyright 2006, NERSCIC Reproduction by permission only COMING SOON! The SCI Guide Goal: Create a comprehensive guide to free, quality, peer-reviewed resources accessed directly online from anywhereGoal: 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/ SCIDeveloped 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 peopleUser-friendly w/ directions to navigate site & best site features, esp. for newly injured, technophobes, & busy people Interactive: users post ratings, suggest new sitesInteractive: users post ratings, suggest new sites

Copyright 2006, NERSCIC Reproduction by permission only Top Websites for the Newly Injured* NSCIA: New Injury New Injury Craig Hospital: Hospital: “Spinal Cord Injury”  ”Educational Brochures” “Spinal Cord Injury”  ”Educational Brochures” SCI-INFO-PAGES: Quadriplegic, Paraplegic, & Caregiver Resources Quadriplegic, Paraplegic, & Caregiver Resources Christopher Reeve Foundation: New Paralysis Resource Kit Reeve Foundation: New Paralysis Resource Kit AARP: Home Design Home Design Care Cure Community: Cure Community: *Copyright 2006: NERSCIC

Need for Further Research

Copyright 2006, NERSCIC Reproduction by permission only 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 learningID/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 practiceFocused 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 standards for online counseling, peer support groups, peer mentoring, etc. Develop curriculum, guides, & other products to assist consumers in using the InternetDevelop curriculum, guides, & other products to assist consumers in using the Internet

Copyright 2006, NERSCIC Reproduction by permission only Presentation Content Made Possible with Support from: National Institute of Disability & Rehabilitation Research Model SCI Systems GrantNational Institute of Disability & Rehabilitation Research Model SCI Systems Grant (Grant # H133N000024) (Grant # H133N000024) Christopher Reeve Foundation Quality of Life GrantsChristopher Reeve Foundation Quality of Life Grants Microsoft Corporation, Inc.Microsoft Corporation, Inc. Boston Medical CenterBoston Medical Center

Copyright 2006, NERSCIC Reproduction by permission only Final Questions What should priority areas of research be?What should priority areas of research be? What new ways could you bring the Internet into your rehab setting?What new ways could you bring the Internet into your rehab setting? What barriers exist in your setting?What barriers exist in your setting? Questions for us?Questions for us?