Making the Connection: Making the Connection: CAB Internet Assessment Project New England Regional Spinal Cord Injury Center @ Boston Medical Center

Making the Connection:Making the Connection:

CAB Internet Assessment CAB Internet Assessment ProjectProject

New England Regional Spinal Cord Injury New England Regional Spinal Cord Injury Center Center

@ Boston Medical Center@ Boston Medical Center

Workshop PollWorkshop Poll

• Do you have access to the Internet at Do you have access to the Internet at home?home?

• How often do you use the Internet?How often do you use the Internet?– Not at all Monthly Weekly DailyNot at all Monthly Weekly Daily

• What do you use the Internet for?What do you use the Internet for?– Email Shopping Disability/Health Info Email Shopping Disability/Health Info

Other Entertainment Chat rooms Other Entertainment Chat rooms Employment EducationEmployment Education

• Has the Internet affected your life?Has the Internet affected your life?– If so, how? If so, how?

Has the Internet affected Has the Internet affected your life?your life?

• Yes, a lot : Yes, a lot : 6/9 6/9

• Yes, somewhat: 2/9Yes, somewhat: 2/9

• No, not much: 1/8No, not much: 1/8

How?How?

• Unbridled access; valuable health-related Unbridled access; valuable health-related info as well as general health info and info as well as general health info and entertainment.entertainment.

• Allows easy communication and easy Allows easy communication and easy access to a wealth of info.access to a wealth of info.

• Made life easier/Easy to look up info.Made life easier/Easy to look up info.• Do most of my research for work, shopping, Do most of my research for work, shopping,

and many other things via the Internet.and many other things via the Internet.• Has made life a lot easier. It’s made all Has made life a lot easier. It’s made all

types of info more obtainable.types of info more obtainable.

How? (Cont’d)How? (Cont’d)

• Allows me to do things without having Allows me to do things without having people do it for me.people do it for me.

• I keep connected with my friends via my I keep connected with my friends via my website and email, and I do shopping and website and email, and I do shopping and rent movies online.rent movies online.

• Provides access to numerous resources. I Provides access to numerous resources. I can shop for items at home, pay bills, can shop for items at home, pay bills, reconcile bank account information, access reconcile bank account information, access credit card accounts, sell items on e-bay, credit card accounts, sell items on e-bay, and research any subject imaginable.and research any subject imaginable.

About NERSCICAbout NERSCIC

• Est.1955 as research arm of BMC’s Dpt. Est.1955 as research arm of BMC’s Dpt. Of Rehabilitation Services, with one of Of Rehabilitation Services, with one of Northeast’s largest spinal cord injury Northeast’s largest spinal cord injury [SCI] rehab units[SCI] rehab units

• Conducts socio-medical research and Conducts socio-medical research and educational programseducational programs

• One of 16 National Model Spinal Cord One of 16 National Model Spinal Cord Systems, designated by NIDRRSystems, designated by NIDRR

NERSCIC ProjectsNERSCIC Projects

• National SCI DatabaseNational SCI Database• Employment Assistance ProjectEmployment Assistance Project• Pain and Employment StudyPain and Employment Study• Building Access StudyBuilding Access Study• The Internet and people with SCIThe Internet and people with SCI

NERSCIC Internet ProjectsNERSCIC Internet Projects

• Pilot MSN TV* StudyPilot MSN TV* Study• National SCI Technology SurveyNational SCI Technology Survey• Consumer Internet Resource Consumer Internet Resource

AssessmentAssessment• Boston Medical Center Internet Boston Medical Center Internet

Training ProjectTraining Project

*Copyright: Microsoft Corporation*Copyright: Microsoft Corporation

Pilot MSN TV StudyPilot MSN TV Study

MSN TV Study QuestionsMSN TV Study Questions

1.1. How do people with SCI use the How do people with SCI use the Internet?Internet?

2.2. How is quality of life [QoL] How is quality of life [QoL] affected by Internet use? affected by Internet use?

3.3. How do participants describe the How do participants describe the effects of Internet access effects of Internet access [benefits vs. risks]?[benefits vs. risks]?

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 commentsAnalyzed qualitative comments

MSN TV Study Results: MSN TV Study Results: Question 1Question 1

How do people with SCI use the Internet?How do people with SCI use the Internet?• 10.6 hrs/wk on the Internet for:10.6 hrs/wk on the Internet for:

1.1. EmailEmail 86%86%2.2. Web SurfingWeb Surfing 80%80%

• Health InfoHealth Info 56%56%• General InfoGeneral Info 65%65%• EntertainmentEntertainment 64%64%

3.3. Chat RoomsChat Rooms 26%26%

• From 3 to 6 mos., use decreasedFrom 3 to 6 mos., use decreased


Table 1. Comparison of WebTV usage overall and between 3 and 6 months Overall 3 month 6 month Hrs/Wk use WebTV 10.6 (9.2) 11.7 (12.9) 9.2 (8.5) How used WebTV Use for Email 86% 91% 78% Surf Web 80% 91% 83% Use Chat room 26% 26% 22% Content Areas Health Information (disability, health)

56% 78% 65%

General Information (news, weather, finance, org group, news groups, directory, government)

65% 78% 65%

Entertainment (travel, games)

64% 78% 70%


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

MSN TV Study Results: Q. MSN TV Study Results: Q. 22

Table 3. Comparisons of baseline and follow - up interviews Health-Related Quality of Life Overall

(N=23) Baseline Follow - up Global Health % Fair or poor health 22% 26% Mean days in past 30 days physical health not good 1.7 (3.4) 5.7 (9.2) Mean days in past 30 days mental health not good 4.7 (8.2) 4.3 (7.7) Mean days sad, blue or depressed 6.8 (10.5) 5.4 (8.1) Mean days worried, tense or anxious 6.7 (9.1) 6.6 (9.6) Social Isolation Mean days in past 30 days poor physical or mental health kept person from doing usual activities

2.0 (3.8) 2.2 (4.5)

Mean number of friends and relatives contact per month 13.0 (11.5) 11.7 (9.5) % Involved in romantic relationship 33% 39% % During past 12 mo sexually active with another person 48% 52% Recreation Mean hours in recreation per week 18.8 (16.8) 15.2 (17.6) Solitary activities (watching television, listening to music, reading or writing)

74%* 48%

Social activities (board games, going out, socializing) 39% 44% *p<.05, for differences between baseline and exit using binomial test for proportions and paired T test for means


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


• Most important benefits of Most important benefits of Internet use Internet use

(in order):(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


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.”


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.”


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.”


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.”

MSN TV Study Results: MSN TV Study Results: Question 3 RisksQuestion 3 Risks

• Only 4/26 participants made any Only 4/26 participants made any negative comments (inc. dropouts)negative comments (inc. dropouts)

• Mostly re: addictive nature of InternetMostly re: addictive nature of Internet• Not backed quantitatively by Not backed quantitatively by

increased social isolation nor increased social isolation nor decreased emotional health outcomesdecreased emotional health outcomes

Pilot MSN TV Study Pilot MSN TV Study LimitationsLimitations

• Measures not adequate to capture Measures not adequate to capture impact (ie. empowerment)impact (ie. empowerment)

• Small numbers—difficult to interpret Small numbers—difficult to interpret quantitative results beyond “trends”quantitative results beyond “trends”

• High drop-out rate: 10/33 withdrew; 6/10 High drop-out rate: 10/33 withdrew; 6/10 got computers for Internet access got computers for Internet access insteadinstead

• Equipment failureEquipment failure

Pilot MSN TV Study Pilot MSN TV Study SummarySummary

• Quality leisure time matters, especially Quality leisure time matters, especially for those with disabilities at risk of being for those with disabilities at risk of being socially isolated.socially isolated.

• Internet has potential to improve QoL Internet has potential to improve QoL

(ie. emotional health, social isolation, (ie. emotional health, social isolation, and participation)and participation)

• More rehabilitative training needed for More rehabilitative training needed for patients re: Internet as a resourcepatients re: Internet as a resource

Pilot MSN TV StudyPilot MSN TV StudySummary (Cont’d)Summary (Cont’d)

• Reported benefits great; risks Reported benefits great; risks minimalminimal

• More research with larger numbers, More research with larger numbers, diverse populations, expanded diverse populations, expanded outcome measures (ie. outcome measures (ie. empowerment)empowerment)

• Programs needed bringing Internet Programs needed bringing Internet to peopleto people

National SCI Technology National SCI Technology SurveySurvey

Technology Survey Technology Survey DescriptionDescription

• 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)

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%

Technology Survey vs Technology Survey vs Pilot Results: Q. 1Pilot Results: Q. 1

MSN TV MSN TV • 10.6 hrs/wk for:10.6 hrs/wk for:

1.1. EmailEmail 86% 86%2.2. Web SurfingWeb Surfing 80% 80%

• Health Info 56%Health Info 56%• General Info 65%General Info 65%• Entertainment 64%Entertainment 64%

3.3. Chat RoomsChat Rooms 26% 26%4.4. ShoppingShopping 35% 35%5.5. Employment Info 5%Employment Info 5%

• 62.4% use at least 62.4% use at least monthly for:monthly for:1.1. EmailEmail 80% 80%2.2. Web SurfingWeb Surfing N/A N/A

• Health Info 35%Health Info 35%• Other 47%Other 47%• Entertainment 28%Entertainment 28%

3.3. Chat RoomsChat Rooms 9% 9%4.4. ShoppingShopping 32% 32%5.5. Employment Info 23%Employment Info 23%

How do people with SCI use the Internet?

Technology

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 controlling for age, race, etc.controlling for age, race, etc.

Technology Survey Technology Survey Results: Other FindingsResults: Other Findings

• Internet used for communication, info, Internet used for communication, info, commercecommerce

• Fairly high access (65%) and use (62%)Fairly high access (65%) and use (62%)• Certain subgroups w/more access barriersCertain subgroups w/more access barriers

—need outreach—need outreach• Pain is an important modifierPain is an important modifier• Scientific study Scientific study

– Control group or before-after surveyControl group or before-after survey– Specific interventionSpecific intervention

Connecting Research to Connecting Research to PracticePractice

Developing Internet projects Developing Internet projects that bring research into the that bring research into the real worldreal world

NERSCIC Real World NERSCIC Real World ProjectsProjects

• Consumer Internet Resource Consumer Internet Resource AssessmentAssessment– Goal: to connect individuals with SCI to Goal: to connect individuals with SCI to

valuable resources available on the Internet, valuable resources available on the Internet, especially if inexperiencedespecially if inexperienced

– Consumers evaluate Internet resourcesConsumers evaluate Internet resources– Develop disability-specific rating system for Develop disability-specific rating system for

websiteswebsites– Create a comprehensive, analytical guide for Create a comprehensive, analytical guide for

the SCI community that is user-friendlythe SCI community that is user-friendly

NERSCIC Real World NERSCIC Real World Projects (Cont’d)Projects (Cont’d)

• BMC Internet Training ProjectBMC Internet Training Project– Provide Internet training to newly Provide Internet training to newly

injured patients with SCI during initial injured patients with SCI during initial acute rehabilitation stayacute rehabilitation stay

– Provide free Internet access in Provide free Internet access in patient’s home post-dischargepatient’s home post-discharge

– Evaluate satisfaction and physical and Evaluate satisfaction and physical and emotional healthemotional health

Other Real World Projects Other Real World Projects NationwideNationwide

• Linking Ages, Palo Alto, CA: provides Linking Ages, Palo Alto, CA: provides Internet access to older adults in Internet access to older adults in assisted living assisted living www.linkingages.netwww.linkingages.net

• UI Hospital Pilot Study, University of UI Hospital Pilot Study, University of Iowa: provides Internet access to all Iowa: provides Internet access to all long-term patients during their hospital long-term patients during their hospital staystay

Final ThoughtsFinal Thoughts

• Exciting potential of Internet for Exciting potential of Internet for people with disabilities at risk of people with disabilities at risk of being socially isolatedbeing socially isolated

• People w/ disabilities using the People w/ disabilities using the Internet moreInternet more

• MSN TV: the affordable option for MSN TV: the affordable option for technophobestechnophobes

Final Thoughts (Cont’d)Final Thoughts (Cont’d)

• Where do you see the Internet Where do you see the Internet making a difference?making a difference?

• How to spread the word?How to spread the word?• How to reach more isolated How to reach more isolated

populations?populations?

Documents

Making the Connection: Making the Connection: CAB Internet Assessment Project New England Regional Spinal Cord Injury Center @ Boston Medical Center