Volume 89, Issue 8 , Pages 1492-1498, August 2008
Computer and Internet Use by Persons After Traumatic Spinal Cord Injury
Article Outline
Abstract
Goodman N, Jette AM, Houlihan B, Williams S. Computer and internet use by persons after traumatic spinal cord injury.
Objective
To determine whether computer and internet use by persons post spinal cord injury (SCI) is sufficiently prevalent and broad-based to consider using this technology as a long-term treatment modality for patients who have sustained SCI.
Design
A multicenter cohort study.
Setting
Twenty-six past and current U.S. regional Model Spinal Cord Injury Systems.
Participants
Patients with traumatic SCI (N=2926) with follow-up interviews between 2004 and 2006, conducted at 1 or 5 years postinjury.
Interventions
Not applicable.
Results
Results revealed that 69.2% of participants with SCI used a computer; 94.2% of computer users accessed the internet. Among computer users, 19.1% used assistive devices for computer access. Of the internet users, 68.6% went online 5 to 7 days a week. The most frequent use for internet was e-mail (90.5%) and shopping sites (65.8%), followed by health sites (61.1%). We found no statistically significant difference in computer use by sex or level of neurologic injury, and no difference in internet use by level of neurologic injury. Computer and internet access differed significantly by age, with use decreasing as age group increased. The highest computer and internet access rates were seen among participants injured before the age of 18. Computer and internet use varied by race: 76% of white compared with 46% of black subjects were computer users (P<.001), and 95.3% of white respondents who used computers used the internet, compared with 87.6% of black respondents (P<.001). Internet use increased with education level (P<.001): eighty-six percent of participants who did not graduate from high school or receive a degree used the internet, while over 97% of those with a college or associate's degree did.
Conclusions
While the internet holds considerable potential as a long-term treatment modality after SCI, limited access to the internet by those who are black, those injured after age 18, and those with less education does reduce its usefulness in the short term for these subgroups.
Key Words: Internet, Patient education, Rehabilitation, Spinal cord injuries
List of Abbreviations: AT, assistive technology, CI, confidence interval, MSCIS, Model Spinal Cord Injury Systems, NERSCIC, New England Regional Spinal Cord Injury Center, OR, odds ratio, SCI, spinal cord injury
PERSONS WHO HAVE SUSTAINED SCI are a medically vulnerable group with a high incidence of secondary conditions.1 In a study of 348 subjects with postacute SCI, 95% reported at least 1 secondary problem; 58% reported 3 or more complications. Obesity, pain, spasticity, urinary tract infections, and pressure ulcers were common. The results suggest the need for ongoing management practices related to prevention and follow-up.2 Paker et al3 conducted a study on 733 patients with SCI who lived in the community and found a rehospitalization rate of 7.6% because of spasticity (25%), pressure ulcers (17.9%), and urinary tract infections (16.1%). This study finding shows the necessity of education of patients and their families. The overall high incidence rates in secondary conditions post-SCI indicate a need for better follow-up care, management, and care coordination on a long-term basis.
A review of the literature indicates that the internet is an important new modality for patient education and could potentially meet the needs of the SCI population. Peer-reviewed evaluations of online health interventions found that the internet reduces resource demands and cost. Other benefits include convenience, reducing health service costs, overcoming isolation, meeting the need for timely information, reducing stigma, and increasing the sense of control for users.4 Consumers are already actively using the internet to obtain information on a wide variety of health topics. Although people still value talking with a physician as the best way to obtain health information, most people first go online to educate themselves on health topics.5 Eighty percent (≈93 million) of Americans have searched for 1 or more (of 16) major health topics online, including chronic conditions; weight loss, maintenance, exercise, and nutrition; psychologic disorders; acute injury or illness; and preventative medicine.6, 7
In a survey of a random sampling of 2038 adults, people with disabilities or chronic illness were more likely to use the internet to access health information and contact their physician through e-mail than respondents who reported themselves as being in excellent or good health.8 The internet is not, however, universally accessible for people with disabilities; there is a very real digital divide. People with disabilities are less likely than the nondisabled to own a computer at home (23.9% vs 51.7%) and less likely to use the internet (11.4% vs 31.1%).9
It is important to distinguish the digital divide as described by Kaye9 from accessibility problems in website navigation that arise because of functional limitations secondary to level of injury and related AT needs. Use of the internet as a treatment modality may help patients get the resources and education to bridge the digital divide and to adopt appropriate AT for computer and internet use, yet there is no assurance of the functional accessibility of any given website. Section 508 of the Rehabilitation Act requires accessibility of websites and information technology only by federal departments and agencies and their contractors.10 The only type of accessibility not addressed in the current study is the accessibility of a given website for people with SCI; further suggestions to address this are mentioned in the Discussion section.
There is some evidence that persons with SCI may be receptive to targeted applications of the internet for education and prevention of secondary conditions. A cross-sectional survey of patients, who were 1 or more years posttraumatic SCI and enrolled in the MSCIS database, found that most owned computers and had internet access, which they used regularly.11 Another survey on the needs and information-seeking practices of 207 persons living in the community after traumatic SCI revealed that while SCI specialists were the most commonly used and valued source of information, they were also seen as the most inaccessible. By contrast, the internet—used by a relatively high proportion of respondents—was viewed as more accessible, although respondents expressed some concern over the quality and reliability of information found there.12
To determine whether the internet has any viability as a tool to prevent and treat secondary complications for the SCI population, it is necessary to ascertain what percentage of the population who has sustained SCI uses computers and the internet. In this study, we examined the frequency with which participants used a computer and accessed the internet; the frequency and the purposes for which they used the internet; and the demographics of computer and internet users versus those who did not use computers or the internet. We also examined use of assistive technology as a mediating factor in computer use.
Methods
Data for this study came from the MSCIS database, a longitudinal database established in 1970 that follows over 30,530 people with traumatic SCI who have ever received services in 1 of the 26 past or current regional centers. Patient data are collected during the initial hospital admission period, 1 year postinjury, and every 5 years subsequently for up to 40 years post-SCI.13 In April 2004, information on computer use, assistive devices used for computer access, frequency of internet use, and type of sites used was added to the national database.14 The current study includes data on computer and internet information provided by 2926 posttraumatic SCI participants at either 1 year or 5 years postinjury, followed up from April 2004 through March 2006. All participants were originally recruited into the study during their initial, postinjury rehabilitation hospitalization at a regional center. Participants had a follow-up at year 1 and year 5 conducted by telephone interview and medical record abstraction. Ten patients did not provide information on education level; 63 patients were not able to specify level of neurologic injury.
From the larger pool of survey items, data were collected with respect to the following variables: computer use (no computer use, computer at home only, computer at home and outside only), frequency of internet use (never; daily, 5–7d every week of the month; weekly, <5d a week and >3d a month; and monthly, ≤3d a month), assistive device use (yes or no and type), and type of internet sites visited (ie, health and disability, e-mail, chat room, employment, shopping, games). We conducted descriptive analysis. We ran logistic regressions to determine dichotomous computer use, dichotomous internet use, and frequency of internet use. We used ORs, accompanying 95% CIs, and P values to examine associations between race, sex, age at time of injury, education, assistive device use, or neurologic status (paraplegic or tetraplegic on the American Spinal Injury Association Impairment Scale) and computer and internet use. To control for all factors and evaluate possible confounders, we then conducted a final multiple logistic regression model for computer and for internet use using all predictors. We conducted all analyses with SAS statistical software.a
Results
Table 1 shows study sample characteristics. Most of this sample of 2926 subjects was male (78.5%) versus female (21.5%). The age distribution at time of injury was as follows: less than 18 years old, 10%; 18 to 29 years, 44.8%; 30 to 41 years, 21.3%; and 42 years or older, 23.9%. The average age of the cohort at time of injury was 31.8 years. The sample was predominantly white (75.4%); black was the next largest racial group (18.7%), followed by Hispanic (2.3%). Most of the sample had a high school diploma or General Education Development diploma (48.3%); the second most common level of education was a bachelor's or associate's degree (24.8%).
Table 1. Characteristics of the Study Sample (N=2926)
| Characteristic | Values | |
|---|---|---|
| Age (y) | 32±14.1 | |
| Age group (y) | ||
 <18 | 293 | 10.0 |
| 18–29 | 1310 | 44.8 |
| 30–41 | 624 | 21.3 |
| ≥42 | 699 | 23.9 |
| Sex | ||
| Men | 2297 | 78.5 |
| Women | 629 | 21.5 |
| Race | ||
| White | 2206 | 75.4 |
| Black | 548 | 18.7 |
| Hispanic | 66 | 2.3 |
| Other races⁎ | 106 | 3.6 |
| Education | ||
| Less than high school | 427 | 14.6 |
| High school diploma or GED | 1409 | 48.3 |
| Bachelor's or associate's | 722 | 24.8 |
| Master's or doctorate | 214 | 7.3 |
| Other education | 144 | 4.9 |
| Missing | 10 | 0.3 |
| Level of SCI | ||
| Tetraplegia | 1512 | 47.2 |
| Paraplegia | 1351 | 52.8 |
| Missing | 63 | 2.2 |
⁎Asian/Pacific Islander, Native American, Eskimo, Aleut. |
Over half (52.8%) of the sample sustained an injury resulting in paraplegia, while 47.2% had an injury that resulted in tetraplegia. The largest subgroups of injuries were complete paraplegia (30.4%), incomplete tetraplegia (29.4%), and complete tetraplegia (22.8%).
Computer Use
The data revealed that a majority of participants with SCI were taking advantage of computer technology: 69.2% of the sample used a computer at home, work, school, or other locations like a library or internet café. Of the 2026 computer users in this database, 19% used assistive devices for computer access such as voice activation or recognition, modified mouse, typing splint, or head pointer. Approximately 69% of subjects with tetraplegia and 69.7% of subjects with paraplegia used computers. In bivariate logistic regression, we saw no difference between respondents with paraplegia and tetraplegia in computer use (OR=1; 95% CI, 0.9–1.2; P=.8). Sixty-five percent of those with tetraplegia and 98.4% of those with paraplegia did not use any assistive devices to access the computer. Participants with paraplegia were .03 times as likely to use assistive devices to access the computer as participants with tetraplegia (95% CI, .02–.05; P<.001).
Most computer users had a high school degree (n=905 [44.8%]) or associate's or bachelor's degree (n=648 [32.1%]). In bivariate logistic regression, increased education level was significantly correlated with computer use (P<.001). Compared with those who did not graduate from high school, high school graduates were 3.3 times more likely to use a computer (95% CI, 2.6–4.1); bachelor's or associate's degree-holders were 16 times more likely (95% CI, 11.7–21.9); and those who completed a master's or doctorate degree were 26.1 times more likely to use a computer (95% CI, 14.7–46.5).
As shown in table 2, computer use varied within racial categories. Most participants who were white (76.0%) and of other races (Asian/Pacific Islander, Native American, Eskimo, Aleuts) (64.2%) used computers. Most respondents who were black (54%) and Hispanic (54.6%) in the sample did not use computers. Logistic regression analysis revealed that race was significantly correlated to computer use. Black and Hispanic subjects were 0.3 times as likely to be computer users as white subjects (black: 95% CI, 0.2–0.3; Hispanic: 95% CI, 0.2–0.4; P<.001). Subjects of other races (Asian/Pacific Islander, Native American, Eskimo, Aleut) were 0.6 times as likely to be computer users as white respondents (95% CI, 0.4–0.9; P=.006).
Table 2. Computer Users by Sample Characteristics (n=2026)
| Characteristics | Values | |
|---|---|---|
| Age (y) | 29±12.6 | |
| Age group (y) | ||
| <18 | 244 | 83.3 |
| 18–29 | 1006 | 76.8 |
| 30–41 | 418 | 67.0 |
| ≥42 | 358 | 51.2 |
| Sex | ||
| Men | 1586 | 70.0 |
| Women | 440 | 69.1 |
| Race | ||
| White | 1676 | 76.0 |
| Black | 252 | 46.0 |
| Hispanic | 30 | 45.5 |
| Other races⁎ | 68 | 64.2 |
| Education | ||
| <High school | 151 | 35.4 |
| High school diploma or GED | 905 | 64.2 |
| Bachelor's or associate's | 648 | 89.8 |
| Master's or doctorate | 200 | 93.5 |
| Other education | 117 | 81.3 |
| Missing | 5 | 0.2 |
| Level of SCI | ||
| Tetraplegia | 1049 | 69.4 |
| Paraplegia | 942 | 69.7 |
| Missing | 35 | 1.7 |
⁎Asian/Pacific Islander, Native American, Eskimo, Aleut. |
As reported in Table 3, Table 4, in a logistic regression model that factored in age at time of injury, sex, race, education, and level of injury, we found that people older than 18 years at the time of injury and people who were black or Hispanic were less likely to be computer users. People with a high school, bachelor's, associate's, master's, or doctorate degree were more likely to be computer users. Sex and injury level were not significant in a full logistic regression model.
Table 3. Adjusted Associations Between Sex, Age, Race, Education, Level of Injury, and Computer Use (n=2853; missing, n=73)
| Characteristic | OR | 95% CI | P |
|---|---|---|---|
| Sex | |||
| Men | 1.00 | ||
| Women | 0.93 | 0.74–1.17 | .532 |
| Age (y) | |||
| <18 | 1.00 | ||
| 18–29 | 0.58 | 0.40–0.85 | .005 |
| 30–41 | 0.36 | 0.24–0.53 | <.001 |
| ≥42 | 0.14 | 0.10–0.21 | <.001 |
| Race | |||
| White | 1.00 | ||
| Black | 0.34 | 0.27–0.43 | <.001 |
| Hispanic | 0.25 | 0.14–0.43 | <.001 |
| Other races⁎ | 0.69 | 0.44–1.10 | .121 |
| Education | |||
| Less than high school | 1.00 | ||
| High school diploma or GED | 3.48 | 2.71–4.48 | <.001 |
| Bachelor's or associate's | 16.22 | 11.54–22.81 | <.001 |
| Master's or doctorate | 27.62 | 15.09–50.54 | <.001 |
| Other education | 8.68 | 5.29–14.26 | <.001 |
| Level of injury | <.001 | ||
| Tetraplegic | 1.00 | ||
| Paraplegic | 1.00 | 0.83–1.21 | .995 |
⁎Asian/Pacific Islander, Native American, Eskimo, Aleut. |
Table 4. Adjusted Associations Between Sex, Age, Race, Education, Level of Injury, and Internet Use (n=1983; missing, n=39)
| Characteristic | OR | 95% CI | P |
|---|---|---|---|
| Sex | |||
| Male | 1.00 | ||
| Female | 1.81 | 1.03–3.19 | .039 |
| Age (y) | |||
| <18 | 1.00 | ||
| 18–29 | 0.23 | 0.07–0.75 | .015 |
| 30–41 | 0.14 | 0.04–0.45 | .001 |
| >42 | 0.11 | 0.03–0.36 | <.001 |
| Race | |||
| White | 1.00 | ||
| Black | 0.40 | 0.25–0.64 | <.001 |
| Hispanic | 0.50 | 0.14–1.77 | .281 |
| Other races⁎ | 0.84 | 0.29–2.42 | .75 |
| Education | |||
| Less than high school | 1.00 | ||
| High school diploma or GED | 2.41 | 1.38–4.21 | .002 |
| Bachelor's or associate's | 5.61 | 2.85–11.04 | <.001 |
| Master's or doctorate | 8.43 | 2.75–25.85 | <.001 |
| Other education | 2.45 | 1.01–5.93 | .047 |
| Level of injury | |||
| Tetraplegic | 1.00 | ||
| Paraplegic | 1.24 | 0.84–1.84 | .273 |
⁎Asian/Pacific Islander, Native American, Eskimo, Aleut. |
Internet Use
Of the 2026 respondents who had computer access, 99.8% (n=2022) had access to the internet, while 94.2% used the internet, as displayed in table 5. Of those who had internet access, 68.6% used the internet daily (5–7d/wk), 17.3% used the internet weekly (<5d/wk, but >3 times a month), 8.3% used the internet 3 or fewer times a month, and 5.8% had access but never used the internet.
Table 5. Frequency of Internet Use Among Computer Users (n=2022)
| Characteristic | Daily | Weekly | Monthly | Never |
|---|---|---|---|---|
| Total sample | 1388(68.6) | 349(17.3) | 167(8.3) | 118(5.8) |
| Age (y) | ||||
| <18 | 189(77.5) | 34(13.9) | 18(7.4) | 3(1.2) |
| 18–29 | 708(70.5) | 167(16.6) | 80(8.0) | 49(4.9) |
| 30–41 | 277(66.4) | 69(16.6) | 36(8.6) | 35(8.4) |
| ≥42 | 214(59.9) | 79(22.1) | 33(9.2) | 31(8.7) |
| Sex | ||||
| Men | 1098(69.4) | 260(16.4) | 121(7.7) | 103(6.5) |
| Women | 290(65.9) | 89(20.2) | 46(10.5) | 15(3.4) |
| Race | ||||
| White | 1204(71.9) | 269(16.1) | 123(7.3) | 79(4.7) |
| Black | 122(49.0) | 61(24.5) | 35(14.1) | 31(12.4) |
| Hispanic | 16(53.3) | 7(23.3) | 4(13.3) | 3(10.0) |
| Other races⁎ | 46(67.6) | 12(17.6) | 5(7.4) | 5(7.4) |
| Education† | ||||
| <High school | 65(43.3) | 36(24.0) | 28(18.7) | 21(14.0) |
| High school diploma or GED | 566(62.7) | 182(20.2) | 89(9.9) | 66(7.3) |
| Bachelor's or associate's | 509(78.6) | 85(13.1) | 35(5.4) | 19(2.9) |
| Master's or doctorate | 169(84.5) | 20(10.0) | 7(3.5) | 4(2.0) |
| Other education | 76(65.0) | 25(21.4) | 8(6.8) | 8(6.8) |
| Level of injury‡ | ||||
| Tetraplegia | 745(71.2) | 155(14.8) | 82(7.8) | 65(6.2) |
| Paraplegia | 623(66.3) | 184(19.6) | 82(8.7) | 51(5.4) |
⁎Asian/Pacific Islander, Native American, Eskimo, Aleut. |
†Missing (n=4). |
‡Missing (n=35). |
Table 5 demonstrates that 94.6% of those with paraplegia and 93.8% of those with tetraplegia used the internet. In bivariate logistic regression, we saw no significant difference in internet use by level of injury (OR=1.2; 95% CI, 0.8–1.7; P=.46). Approximately 94% of assistive device users and 94.2% of those who did not use assistive devices accessed the internet. Logistic regression showed that use of assistive devices did not affect whether participants accessed the internet (OR=1.1; 95% CI, 0.8–1.7; P=.73). Most subjects with paraplegia (66.3%) and tetraplegia (71.2%) accessed the internet daily.
The vast majority of men and women who had access to a computer used the internet: 93.5% of men versus 96.6% of women. Most men (69.4%) and women (65.9%) who used the internet did so daily. In bivariate logistic regression, we found that women were more likely to use the internet (OR=2; 95% CI, 1.1–3.4; P=.02). Sex differences in frequency of internet use were not statistically significant (OR=1.1; 95% CI, 0.9–1.4; P=0.3).
Among those with computer access, table 5 indicates that the age group with the largest percentage of internet users was those who were under 18 years old at time of injury (98.8%). The computer users injured at age 42 years or older had the lowest percentage of internet use (91.3%). While most computer users in all age groups used the internet daily, participants injured before they were 18 years old had the highest percentage of daily internet use (77.5%). Logistic regression results demonstrated that people ages 30 to 41 years and those age 42 years and older at time of injury were .14 and .13 times as likely, respectively, to access the internet as people under the age of 18 (OR=.14; 95% CI, .04–.45; P=.001; OR=.13; 95% CI; .04–.43; P=.001).
Although a majority of subjects from all racial groups with computer access used the internet, respondents in the racial group with the highest percentage of internet users were white (95.3%). Black subjects displayed the lowest percentage of internet users (87.6%). Differences between internet use by black compared with white respondents were significant (OR=.35; 95% CI, 0.2–0.5; P<.001). We found no significant difference in internet use between white and Hispanic participants, or white participants and those of other races (Asian/Pacific Islander, Native American, Eskimo, Aleut). Frequency of internet use also varied by race: 71.9% of subjects who were white with access to the internet used the internet daily, compared with 49% of those who were black, 53.3% of Hispanic subjects, and 67.6% of those of other races.
Most computer-using participants in each educational group used the internet. The percentage of internet users increased with education level as outlined in table 5: 86% of people who did not graduate from high school or obtain a General Educational Development diploma used the internet, while 97.1% of those with a bachelor's or associate's degree and 98% of those with a master's or doctorate went online. Logistic regression found that bachelor's or associate's degree holders were 5.4 times more likely to access the internet than those who did not graduate from high school (95% CI, 2.8–10.3; P<.001). Those who completed a master's or doctorate degree were 8 times more likely to go online than those who did not complete high school or receive a General Educational Development diploma (95% CI, 2.7–23.8; P<.001). Frequency of internet use among those with internet access followed a similar pattern: 43.3% of persons who did not graduate from high school were daily internet users, compared with over 80% of those with their master's or doctorate degree.
In a logistic regression model adjusting for sex, age, education, and injury level, as laid out in Table 3, Table 4, being a woman, being older than 18 years of age at time of injury, being black, and holding an associate's or bachelor's degree or higher all remained significant in predicting internet use.
Participants in the SCI database with internet access used the internet for numerous purposes, including e-mail (90.7%), shopping (66.0%), disability and health websites (61.3%), employment (38.4%), and chat rooms (15.5%).
Discussion
Our findings clearly indicate that the internet has considerable potential as a viable modality for prevention and treatment of secondary complications for persons who have sustained a traumatic SCI. Over two thirds of these participants (69.2%) had access to a computer, and of those with computer access, 94.2% had accessed the internet, with a majority of internet users (68.6%) going online daily.
Computer use and internet use did not vary significantly by level of injury. Over 60% of those with paraplegia and tetraplegia used a computer; among those with computer access, 93.8% of those with tetraplegia and 94.6% of those with paraplegia used the internet. People with higher levels of injury were more likely to use the internet daily than those with lower injury levels: 71.2% of subjects with tetraplegia compared with 66.3% of subjects with paraplegia. Most people at each level of injury did not use assistive devices, such as voice activation or recognition, a modified mouse, typing splint, or head pointer, to operate a computer. This suggests that people with higher injuries are not necessarily dependent on assistive devices for computer access. Some possible explanations for this low rate of assistive device use is that people with SCI are gaining mobility in their hands and fingers, are finding alternative ways to operate their computers, or are receiving assistance from personal care attendants, friends, or family. Severity of injury, neurologic status, and access to assistive devices are not barriers to accessing the computer, in turn making the internet a suitable treatment modality for people of all injury levels from the standpoint of functional accessibility of required hardware.
Approximately 15% of respondents used chat rooms. Several studies have indicated that online communication such as support groups and chat rooms can be an effective communication and social integration tool. In an 11-year cohort study of patients with locked-in syndrome, including people with SCI, patients experienced an increase in communication with family and friends at 11 years related to technology use—in particular, computer and internet access.15 A clinical trial of patients with breast carcinoma indicated that participation in an online support group significantly decreased depression and that 67% found it beneficial.16
High-quality SCI chat rooms currently exist, although none have been evaluated for efficacy. One example of particular importance is the CareCure Forum (http://sci.rutgers.edu), a project of the W. M. Keck Center for Collaborative Neuroscience. This very active site has forums in which users can trade suggestions on preventing secondary complications and treating existing health issues. To ensure the information is safe and accurate, the site is monitored; SCI nurses are available online to answer questions.
In addition to impacting social support and communication, numerous studies have shown online interventions to impact health outcomes successfully through patient education and behavioral change. For people with SCI, 2 relevant studies have been conducted: a pilot online intervention with an across-subjects design improved skin care for adults with paraplegia, and a case-control study examined a computer-assisted training intervention that improved wheelchair mobility on an obstacle course.17, 18 Other disease populations have been more widely studied and offer relevant evidence. For example, in a meta-analysis of web-based versus nonweb-based interventions for chronic illness, the effect size comparisons showed an improvement for outcomes that included increased exercise time, increased participation in health care, slower health decline, and 18-month weight loss maintenance, among others.6
Nonetheless, our findings reveal several limitations in the current potential of the internet as a modality for prevention and long-term management with patients who have sustained a traumatic SCI, most notably disparities in internet use by age, race, and formal education level. People injured before age 30 years, and especially those injured before age 18 years; people with college or graduate degrees; and white subjects had the highest computer and internet access. Lower education levels and being older than 30 years at the time of injury corresponded to decreased computer access and internet use. Participants who were black or Hispanic used computers at significantly lower rates than white participants. Black subjects had lower rates of internet access and reported using the internet less frequently than their white counterparts. Most black respondents, people who were injured at age 42 years or older, and people who had less than a high school degree did not use a computer. This disparity is also true in the general population: computer access and usage disparities have been found within income, education, age, and ethnic groups. The digital divide especially affects lower-income people who are black.19
While only a minority of black participants had computer access in this sample, a high proportion of this group of computer users did use the internet. Only 46% of black respondents had computer access, but of this group, 87.6% accessed the internet. The same pattern was seen for education level and age at injury. While 35.4% of subjects who did not graduate from high school had computer access, 86% of this group accessed the internet. Approximately 51% of people injured at age 42 years or older had computer access, but 88.3% of this group accessed the internet. This suggests that one of the barriers to internet use for this population is simply having easy access to a computer.
Public and private grants for low-income patients are one way to bridge the digital divide for marginalized populations. These grants are listed at sites such as http://www.fundsnetservices.com, http://fundingopps.cos.com, and Searchzone at http://fdncenter.org. The Cristina Foundation (http://www.cristina.org) has community partners that distribute free refurbished computers to persons with disabilities. Also of note is the Alliance for Technology Access (http://www.ataccess.org/community/centers.lasso), which has set up accessible computer centers for the disabled on a national level. Many local Easter Seals organizations (http://www.easterseals.com) or state vocational rehabilitation agencies offer free computers for people with disabilities who return to school or work.
In addition to offering access to resources, providing education on how to use the computer and internet is necessary to bridging the digital divide. In a study of 231 recently diagnosed, lower-income patients with breast cancer, participants were provided with a free computer, internet access, and training, which independently contributed to perceived information competence.20 Although this type of intervention has not yet been tested for people with SCI, computer skills and training have been shown to be significant predictors of employment.21
Thus, the NERSCIC at Boston Medical Center has worked to eliminate this disparity and improve patient education by incorporating internet use into inpatient rehabilitation as a treatment modality. NERSCIC placed MSN TV equipment in all patient rooms, allowing patients to access the internet through their televisions. NERSCIC offers both inpatients about to be discharged and outpatients with no previous internet access free MSN TV equipment for their homes and a free 1-year subscription.22 In addition, NERSCIC established an inpatient internet access group. A trained facilitator uses reliable, online resources to educate patients on preventing and treating secondary injuries, while simultaneously assessing for AT needs and teaching basic computer and internet navigation skills.23
Another barrier to using the internet for health education and related interventions is patient concern about the quality of information available online, which falls under the emerging concept of knowledge translation. The goal of knowledge translation is to “reflect the context in which end-users of high quality information will make decisions, solve problems, or use knowledge as…consumers in everyday life.”24 As it relates to the internet, knowledge translation addresses the broader issue that goes beyond users with disabilities—namely, that users in general do not know how to evaluate online health information and whether it is evidence-based for proper application in their lives.
To address issues around the quality of SCI websites, NERSCIC assembled a diverse consumer advisory board that represented different ages, injury levels, and backgrounds. Under the guidance of the research team, the board rated websites based on accuracy, clarity, comprehensiveness, and user-friendliness. Online and paper versions of this guide, called the SCI Guide, are available at http://www.bu.edu/sciguide. The SCI Guide board also reviewed sites for accessibility. There are free online tools like Bobby (http://www.cast.org/bobby) and Cynthia Says (http://www.cynthiasays.com) that can be used to analyze web pages for their accessibility. A host of advocacy organizations can assist with this process (see http://www.ittatc.org for a list of related sites).
In addition to developing new resources, existing internet resources can be adapted to meet the needs of people with SCI. Internet users can customize popular web pages like Yahoo and Google to feature health articles and automatically display any new information on SCI. These web pages also contain calendars where a user could track medical appointments and times that medications need to be taken. The calendar can be shared with as many people as the user chooses, such as caretakers and other persons providing support. Special interest groups and support networks for people with disabilities can have grassroots development within existing social networking sites such as Friendster, My Space, and Facebook. Shopping sites can be used to purchase equipment and other medical supplies. For instance, Amazon (http://www.amazon.com) has a comprehensive offering of mobility aids and equipment, much of which is offered at a discount. Consumers could, for example, purchase a gel wheelchair cushion that equalizes pressure and reduces the incidence of pressure ulcers.
Study Limitations
The major limitation of this study is that the sample may not be representative of people who have sustained an SCI. Patients who would have been eligible may not have been recruited if they were unable to speak English. Also, minority patients in general are underrepresented in the database. In addition, there is a high rate of loss to follow-up, particularly of people who have a lower socioeconomic status and worse health outcomes.25
Conclusions
On the basis of our analysis, there is evidence to indicate that most persons with SCI are able and willing to use the internet. The purposes for which they use it, which include e-mail and health websites, are compatible with the goals of health education, treatment, and prevention. We believe the internet has considerable potential as a treatment tool to prevent and/or treat secondary conditions post-SCI. In addition to being an important treatment modality, internet navigation is a necessary skill for many types of employment, particularly for those patients whose injury has limited their ability to perform manual labor. Our analysis shows that there are several barriers including age at time of injury, education level, and race. By including internet learning groups in inpatient and outpatient settings, we can educate patients who would otherwise not be exposed to the internet's capacities and resources and prepare them both for self-care and for future employment. Persons who are already proficient with computers can learn how to use assistive devices, explore their health issues in further depth, and refine their computer skills in preparation for employment.
In addition, we found that most computer users with SCI used the internet. Making computers available to patients, either through outpatient support groups by connecting them to groups that provide free or inexpensive refurbished computers, or by creating a resource list of reputable and handicap accessible places to access the internet, will help to address this disparity. The goals of knowledge translation can be furthered if hospitals and other clinical practices develop a list of reliable and accurate online resources with a local service component that can assist patients. We would also suggest developing and testing standards for online counseling, peer support groups, and peer mentoring; designing and evaluating new patient education interventions; and partnering with programs that enable and train people with SCI to purchase or otherwise access computers and the internet.
Supplier
Acknowledgments
We thank Howard Cabral, PhD, for his work as SAS analysis adviser; Pengsheng Ni, MD, and Don Allensworth-Davies, MPH, for their assistance with analysis; and Delia Hodge-Dowling, BA, for her editing work.
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- a Version 9.1; SAS Institute Inc, 100 SAS Campus Dr, Cary, NC 27513.
Supported by the National Institute on Disability and Rehabilitation Research, National Model Spinal Cord Injury Model Systems, U.S. Department of Education (grant no. H133N060024).No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated.
PII: S0003-9993(08)00321-3
doi:10.1016/j.apmr.2007.12.038
© 2008 American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.
Volume 89, Issue 8 , Pages 1492-1498, August 2008
