Computer and internet use by persons after traumatic spinal cord injury.
Goodman N, Jette AM, Houlihan B, Williams S. Department of Public Health, Boston University, Boston, MA 02118, USA. naomirgoodman@yahoo.com Arch Phys Med Rehabil. 2008 Aug;89(8):1492-8.
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.
Internet education for spinal cord injury patients: focus on urinary management.
Brillhart B. Arizona State University, College of Nursing, USA. barbara.brillhart@asu.edu Rehabil Nurs. 2007 Sep-Oct;32(5):214-9.
The goal of this project was to develop a Web site with articles that focus on urinary self-care management for those with spinal cord injuries. The investigator wrote 18 articles on topics that were selected by two review panels–one whose members have long-term spinal cord injuries and another consisting of rehabilitation nurses. The panel members critically reviewed the articles for content and topic. After revisions, nine of the 18 articles were translated from English into Spanish and then translated back into English to ensure accuracy. Consumers were asked to rate their satisfaction with the articles on a scale of 1-10, with 10 being the highest. There were a total of 1,162 hits on the Web site during a period of 13 months; 811 were for the Spanish articles, and 351 were for the English articles. The mean rating score for the articles was 8.02, with a standard deviation of 1.38. These findings are consistent with reports that the Internet can provide both user-friendly education for those living with disabilities and culturally sensitive health information for those who have limited access to other sources of information.
Intellectual impairment and sexual health: information needs.
Clark LI, O’toole MS. Florence Nightingale School of Nursing and Midwifery, King’s College, London. Br J Nurs. 2007 Feb 8-21;16(3):154-6.
Inclusion into the wider community for people with learning disabilities and intellectual impairment has been problematic for many people and in some cases the result has been an exacerbation of mental health problems or a reduction in adaptive functioning. Research has found that people who have chronic mental illness or intellectual impairment are a sexually active group although they might not always be perceived as such. Therefore, there are questions that may be raised over an identified lack of sexual health promotion and practices surrounding safe sex. This short article will examine particular barriers to sexual health care for this patient group in the areas of consent (to sexual acts, screening and treatment), communication and health promotion in this field. Implications for future practice are discussed.
People with intellectual disabilities and their need for cancer information.
Tuffrey-Wijne I, Bernal J, Jones A, Butler G, Hollins S. St. George’s, University of London, Department of Mental Health (Learning Disabilities), Jenner Wing, Cranmer Terrace, London SW17 0RE, UK. ituffrey@sgul.ac.uk Eur J Oncol Nurs. 2006 Apr;10(2):106-16. Epub 2005 Oct 6.
Many people with intellectual disabilities will be affected by cancer in their lifetime. There is a lack of available knowledge about people with intellectual disabilities’ understanding and experience of cancer, and about their need for cancer information. The principal aim of the study was to explore the information needs of people with intellectual disabilities who are affected by cancer. This was a qualitative, hypothesis generating study. Nine people with intellectual disabilities who were affected by cancer were identified using a purposive sampling method; five of these participated in the study. Data collection included observation of the use of a pictorial cancer information book designed for people with intellectual disabilities, and semi-structured interviews. Data analysis revealed three themes: (1) “Nobody told me”: the desperate need for cancer information; (2) “That reminds me”: telling my own story; and (3) “I don’t know much about cancer”: the difficulties of the staff supporting people with intellectual disabilities to read the cancer information book. The people with intellectual disabilities in this study were not provided with information about cancer. They wanted this information, and appeared to be capable of comprehending it. Further development of accessible information materials around cancer and palliative care is needed.
Surfing for scoliosis: the quality of information available on the Internet.
Mathur S, Shanti N, Brkaric M, Sood V, Kubeck J, Paulino C, Merola AA. Department of Orthopaedic Surgery, SUNY Downstate Medical Center, Brooklyn, NY 11203-2098, USA. Spine. 2005 Dec 1;30(23):2695-700.
STUDY DESIGN: A cross section of Web sites accessible to the general public was surveyed.
OBJECTIVE: To evaluate the quality and accuracy of information on scoliosis that a patient might access on the Internet.
SUMMARY OF BACKGROUND DATA: The Internet is a rapidly expanding communications network with an estimated 765 million users worldwide by the year 2005. Medical information is one of the most common sources of inquires on the Web. More than 100 million Americans accessed the Internet for medical information in the year 2000. Undoubtedly, the use of the Internet for patient information needs will continue to expand as Internet access becomes more readily available. This expansion combined with the Internet’s poorly regulated format can lead to problems in the quality of information available. Since the Internet operates on a global scale, implementing and enforcing standards have been difficult. The largely uncontrolled information can potentially negatively influence consumer health outcomes.
METHODS: To identify potential sites, five search engines were selected and the word “scoliosis” was entered into each search engine. A total of 50 Web sites were chosen for review. Each Web site was evaluated according to the type of Web site, quality content, and informational accuracy by three board-certified academic orthopedic surgeons, fellowship trained in spinal surgery, who each has been in practice for a minimum of 8 years. Each Web site was categorized as academic, commercial, physician, nonphysician health professional, and unidentified. In addition, each Web site was evaluated according to scoliosis-specific content using a point value system of 32 disease-specific key words pertinent to the care of scoliosis on an ordinal scale. A list of these words is given. Point values were given for the use of key words related to disease summary, classifications, treatment options, and complications. The accuracy of the individual Web site was evaluated by each spine surgeon using a scale of 1 to 4. A score of 1 represents that the examiner agreed with less than 25% of the information while a score of 4 represents greater than 75% agreement.
RESULTS: Of the total 50 Web sites evaluated, 44% were academic, 18% were physician based, 16% were commercial, 12% were unidentified, and 10% were nonphysician health professionals. The quality content score (maximum, 32 points) for academic sites was 12.6 +/- 3.8, physician sites 11.3 +/- 4.0, commercial sites 11 +/- 4.2, unidentified 7.6 +/- 3.9, and nonphysician health professional site 7.0 +/- 1.8. The accuracy score (maximum, 12 points) was 6.6 +/- 2.4 for academic sites, 6.3 +/- 3.0 for physician-professional sites, 6.0 +/- 2.7 for unidentified sites, 5.5 +/- 3.8 for nonphysician professional sites, and 5.0 +/- 1.5 for commercial Web sites. The academic Web sites had the highest mean scores in both quality and accuracy content scores.
CONCLUSION: The information about scoliosis on the Internet is of limited quality and poor information value. Although the majority of the Web sites were academic, the content quality and accuracy scores were still poor. The lowest scoring Web sites were the nonphysician professionals and the unidentified sites, which were often message boards. Overall, the highest scoring Web site related to both quality and accuracy of information was www.srs.org. This Web site was designed by the Scoliosis Research Society. The public and the medical communities need to be aware of these existing limitations of the Internet. Based on our review, the physician must assume primary responsibility of educating and counseling their patients.
Accessibility compliance rates of consumer-oriented Canadian health care Web sites.
O’Grady L. Ontario Institute for Studies in Education, University of Toronto, Toronto, Canada. logrady@oise.utoronto.ca Med Inform Internet Med. 2005 Dec;30(4):287-95.
Vast amounts of consumer-based health care information are widely available on the World Wide Web. However, for some this material is inaccessible due to reliance on specialized computer equipment or software known as assistive technology. These tools, designed for people with sensory, physical, or learning disabilities, act as a median to interpret Web pages in accessible ways. Unfortunately, many websites, including those with health-related content are not designed to accommodate this equipment. No research has yet been published examining the extent of this problem in Canadian consumer-oriented health care sites. The purpose of this study was to investigate the percentage of accessible consumer-based health care websites of Canadian origin. A listing of such sites was randomly sampled for study inclusion. Each was assessed for accessibility based on the World Wide Web Consortium (W3C) Web Accessibility Initiative (WAI) Web Content Accessibility Guidelines (WCAG) 1.0 using the validation software Bobby. The results indicated that only about 40% of pages investigated were free of errors in accordance with WCAG 1.0 Priority 1 level. Websites should be constructed in compliance with these standards to better accommodate those using assistive devices.
Family-centred service: moving ideas into practice.
Law M, Teplicky R, King S, King G, Kertoy M, Moning T, Rosenbaum P, Burke-Gaffney J. CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. lawm@mcmaster.ca Child Care Health Dev. 2005 Nov;31(6):633-42.
BACKGROUND: With parents more involved in their child’s day-to-day care, concepts of family-centred service (FCS) are increasingly adopted in children’s health and rehabilitation service organizations.
METHODS: In this paper, we report the results of a study to develop and evaluate educational materials for parents, service providers and health sciences students about FCS. The materials focus on the nature and philosophy of FCS, and the practical skills and systemic changes required for its implementation.
RESULTS: Thirty-six participants (12 families, 12 service providers and 12 rehabilitation science students) were randomly assigned to receive one of the six FCS educational packages, each containing three FCS educational sheets. Participants’ ratings of the format and content, and the impact of the FCS Sheets were very high, with overall means above 5.0 on a 7-point scale. Using a mixed model analysis, we found significant differences in participants’ ratings of familiarity with the materials (students were less familiar than service providers). After statistical adjustment for familiarity, there were no significant differences between the groups or the packages on ratings of format and content or impact.
CONCLUSIONS: There were no significant differences in the way in which the participant groups rated the impact of the FCS Sheets and the specific packages did not have an effect on the participants’ ratings. The FCS educational materials, even those less familiar to participants, were rated highly on format and content, and impact. Results indicate that the material was perceived to be important to each group, and was formatted and written in a way that was easy to understand. This finding counters current recommendations in the knowledge transfer literature that suggest different versions should be written for different target groups.
Computer and World Wide Web accessibility by visually disabled patients: problems and solutions.
Chiang MF, Cole RG, Gupta S, Kaiser GE, Starren JB. Department of Ophthalmology, Columbia University College of Physicians and Surgeons, New York, New York 10032, USA. chiang@dbmi.columbia.edu Surv Ophthalmol. 2005 Jul-Aug;50(4):394-405.
Rapid advances in information technology have dramatically transformed the world during the past several decades. Access to computers and the World Wide Web is increasingly required for education and employment, as well as for many activities of daily living. Although these changes have improved society in many respects, they present an obstacle for visually disabled patients who may have significant difficulty processing the visual cues presented by modern graphical user interfaces. This article reviews the specific barriers to computer and Web access faced by visually disabled patients, describes clinical evaluation methods, summarizes traditional low vision methods as well as newer assistive computer technologies for universal accessibility, and discusses emerging technologies and future directions in this area.
Camp for all connection: a community health information outreach project.
Huber JT, Walsh TJ, Varman B. Texas Woman’s University, 1130 John Freeman Boulevard, Houston, Texas 77030, USA. jhuber@mail.twu.edu J Med Libr Assoc. 2005 Jul;93(3):348-52.
PURPOSE: The purpose of the Camp For All Connection project is to facilitate access to electronic health information resources at the Camp For All facility. SETTING/PARTICIPANTS/RESOURCES: Camp For All is a barrier-free camp working in partnership with organizations to enrich the lives of children and adults with chronic illnesses and disabilities and their families by providing camping and retreat experiences. The camp facility is located on 206 acres in Burton, Texas. The project partners are Texas Woman’s University, Houston Academy of Medicine-Texas Medical Center Library, and Camp For All.
BRIEF DESCRIPTION: The Camp For All Connection project placed Internet-connected workstations at the camp’s health center in the main lodge and provided training in the use of electronic health information resources. A train-the-trainer approach was used to provide training to Camp For All staff.
RESULTS/OUTCOME: Project workstations are being used by health care providers and camp staff for communication purposes and to make better informed health care decisions for Camp For All campers.
EVALUATION METHOD: A post-training evaluation was administered at the end of the train-the-trainer session. In addition, a series of site visits and interviews was conducted with camp staff members involved in the project. The site visits and interviews allowed for ongoing dialog between project staff and project participants.
Use of the Internet for health information by older adults with arthritis.
Tak SH, Hong SH. College of Nursing, University of Arkansas for Medical Sciences, Little Rock, USA. Orthop Nurs. 2005 Mar-Apr;24(2):134-8.
BACKGROUND: Despite the information available on the Internet and the increasing number of older adults who use the Internet, little is known about Internet use for health information by elders with arthritis.
PURPOSE: The purposes of this study were (1) to examine the use of computers and the Internet by elders with arthritis and (2) to describe demographic and illness-related characteristics of elders who use the Internet to find health information.
SAMPLE: Seventy-one elders with arthritis completed survey questionnaires. FINDINGS: Twenty-eight percent had a computer in their home, of whom 95% had Internet access. Thirty-nine percent sought arthritis information on the Internet. People with more education were more likely to use the Internet. However, age and functional disability resulting from arthritis were not associated with Internet use.
IMPLICATIONS: Health professionals need to be aware of Internet resources and assist elders in finding appropriate Internet-based arthritis information.
Patterns of Internet use by persons with spinal cord injuries and relationship to health-related quality of life.
Drainoni ML, Houlihan B, Williams S, Vedrani M, Esch D, Lee-Hood E, Weiner C. Boston University School of Public Health, New England Spinal Cord Injury Center, MA, USA. drainoni@bu.edu Arch Phys Med Rehabil. 2004 Nov;85(11):1872-9.
OBJECTIVES: To examine patterns of computer and Internet use among persons with spinal cord injuries (SCI) and to assess the relationship between Internet use and health-related quality of life (HRQOL).
DESIGN: Cross-sectional survey design.
SETTING: National Model Spinal Cord Injury Systems.
PARTICIPANTS: People with SCI enrolled in a national database.
INTERVENTIONS: Not applicable.
MAIN OUTCOME MEASURES: Patterns of Internet use and relationship to HRQOL indicators: self-perceived health status, health status compared with 1 year ago, severity of depression, social integration score, occupation score, contacts with friends, business contacts, and satisfaction with life.
RESULTS: Most subjects owned computers, had Internet access, and used the Internet regularly-primarily for email, disability and health information, and shopping. Bivariate analysis revealed significant differences in Internet access based on sociodemographics, particularly among subjects with less education and among African Americans and Hispanics. In initial univariate analysis, most HRQOL indicators were significantly better for Internet users; once sociodemographic factors were included, 4 indicators remained significant.
CONCLUSIONS: Complex factors contribute to Internet access among people with SCI, with more barriers among specific subgroups. A significant HRQOL benefit from Internet use is suggested. Targeted interventions and studies of usage patterns are recommended.
Web content accessibility of consumer health information web sites for people with disabilities: a cross sectional evaluation.
Zeng X, Parmanto B. Department of Health Information Management, School of Health and Rehabilitation Sciences, University of Pittsburgh, Pittsburgh, PA 15260, USA. xizst9@pitt.edu J Med Internet Res. 2004 Jun 21;6(2):e19.
BACKGROUND: The World Wide Web (WWW) has become an increasingly essential resource for health information consumers. The ability to obtain accurate medical information online quickly, conveniently and privately provides health consumers with the opportunity to make informed decisions and participate actively in their personal care. Little is known, however, about whether the content of this online health information is equally accessible to people with disabilities who must rely on special devices or technologies to process online information due to their visual, hearing, mobility, or cognitive limitations.
OBJECTIVE: To construct a framework for an automated Web accessibility evaluation; to evaluate the state of accessibility of consumer health information Web sites; and to investigate the possible relationships between accessibility and other features of the Web sites, including function, popularity and importance.
METHODS: We carried out a cross-sectional study of the state of accessibility of health information Web sites to people with disabilities. We selected 108 consumer health information Web sites from the directory service of a Web search engine. A measurement framework was constructed to automatically measure the level of Web Accessibility Barriers (WAB) of Web sites following Web accessibility specifications. We investigated whether there was a difference between WAB scores across various functional categories of the Web sites, and also evaluated the correlation between the WAB and Alexa traffic rank and Google Page Rank of the Web sites.
RESULTS: We found that none of the Web sites we looked at are completely accessible to people with disabilities, i.e., there were no sites that had no violation of Web accessibility rules. However, governmental and educational health information Web sites do exhibit better Web accessibility than the other categories of Web sites (P < 0.001). We also found that the correlation between the WAB score and the popularity of a Web site is statistically significant (r = 0.28, P < 0.05), although there is no correlation between the WAB score and the importance of the Web sites (r = 0.15, P = 0.111).
CONCLUSIONS: Evaluation of health information Web sites shows that no Web site scrupulously abides by Web accessibility specifications, even for entities mandated under relevant laws and regulations. Government and education Web sites show better performance than Web sites among other categories. Accessibility of a Web site may have a positive impact on its popularity in general. However, the Web accessibility of a Web site may not have a significant relationship with its importance on the Web.
Evaluation of consumer health website accessibility by users with sensory and physical disabilities.
Chiang MF, Starren J. Department of Biomedical Informatics, Columbia University, New York, NY 10032, USA. chiang@dbmi.columbia.edu Stud Health Technol Inform. 2004;107(Pt 2):1128-32.
Growth of the World Wide Web is beginning to create new opportunities for direct patient access to health care resources. At the same time, advances in medical care have produced demographic shifts in which an increasing number of patients have sensory and physical disabilities that may limit their ability to access these new information tools. This study uses automated and manual methods to measure the compliance of 30 popular consumer health websites with the World Wide Web Consortium (W3C) content accessibility guidelines. Among these 30 sites, 22 failed to satisfy at least one W3C Priority-1 accessibility checkpoint, making it impossible for some groups of disabled users to access information from them. All websites failed to satisfy at least one Priority-2 checkpoint, making it difficult for some groups to access information from the sites. These results suggest that accessibility of many consumer health websites to disabled users is very limited. The health informatics community must become more aware of this problem, particularly because many critical accessibility problems may be easily addressed if they are recognized.