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Internet Education for Spinal Cord Injury Patients: Focus on Urinary Management
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.
Urinary management is a lifelong self-care issue for those with a spinal cord injury. Current, accurate information is necessary to respond to changes in health status; to stay current with healthcare, diagnostic tests, and treatments; and to provide ongoing education to those with spinal cord injuries and their caregivers.
Those with neurogenic bladder syndrome seek information on urinary management to improve their socialization, economic well-being, educational opportunities, vocational opportunities, and levels of autonomy and self-care. Problems associated with neurogenic bladder syndrome include embarrassment, decreased self-esteem, social isolation, and a lower quality of life. On top of all of these health issues is the difficulty in obtaining updated health information.
It is estimated that 250,000–288,000 people are living with spinal cord injuries in the United States (Spinal Cord Injury Information Network, 2005). In addition, there are 11,000 new cases of spinal cord injury each year (National Center for Injury Prevention and Control, 2005). A person with a spinal cord injury can expect to live into their 60s and even 70s. If injured as a young adult, a person with a spinal cord injury may have 43.5%–83.9% of a normal life expectancy (DeVivo & Stover, 1995). Another study revealed that those with tetraplegia have 70% of a normal life expectancy, compared to paraplegics, whose life expectancy rates are about 85% of normal rates (Soden, et al., 2000). These rates of longevity attest to the need for health information that extends beyond formal rehabilitation and into self-care that could potentially last decades.
The Internet can be a vital source of information for those with a spinal cord injury. Eight out of 10 Americans who use the Internet have searched online for at least one major health topic. About 95 million Americans 18 years and older use the Internet to find health information. Two-thirds of all Internet users have searched for information about a specific disease or medical problem (Fox, 2005). Healthcare information is within the top 5–10 topics of interest for Internet users, and 90% report that the Internet is a viable source of health information (Wood, Lyon, Schell, Kitendaugh, Cid, & Seigel, 2000). A recent survey revealed that one in five online users in the United States found the Internet to be a crucial source of healthcare information. Many reported that the Internet was helpful for those coping with a major illness (Madden & Fox, 2006).
The Internet can also provide healthcare education in a culturally sensitive, bilingual format. The Hispanic/Latino population is the largest minority group in the United States (U.S. Bureau of the Census, 2000). Approximately 42 million people, or 14.5%, of U.S. inhabitants are Hispanic (American Community Survey, 2005). It is estimated that by 2050, Hispanics will constitute 25% of the U.S. population. There has been an increased proportion of Hispanics with spinal cord injury, from 6% in 1979 to 12.6% in 2000. In comparison, 78.8% of Caucasians suffered a spinal cord injury in 1979, which decreased to 62.9% in 2000 (Spinal Cord Injury Information Network, 2005). Health information in the Spanish language is necessary to address the needs of Hispanics who only speak and read Spanish, and for those who prefer to read and speak Spanish.
As previously stated, the goal of this project was to develop a Web site with articles that focus on urinary management for those with spinal cord injuries. The articles would be available in both English and Spanish. The investigator also sought to determine how many times people accessed the Web site and how satisfied they were with the content of the information.
Is the Internet an effective medium for self-care health education, focusing on urinary management for those with a spinal cord injury?
Would users access the articles presented in English more or less frequently than the articles presented in Spanish?
A review of the literature was conducted to help develop a useful Web site, identify health problems of those with spinal cord injury, and describe the potential of providing this type of information in both English and Spanish.
Most Common Urinary Health Problems Among People with Spinal Cord Injury
A study conducted to identify the relationship of aging and secondary conditions among those with spinal cord injury indicated that 62% experienced urinary infections within the first year post-injury, but nearly 95% experienced urinary infections within 20 years post-injury (Krause, 2000).
A longitudinal study that examined the incidence of the first kidney calculi among 5,850 persons with spinal cord injury indicated that the highest risk of kidney calculi was within the first 3 months post-injury; 7% of subjects experienced kidney calculi within 10 years of injury (Chen, DeVivo, & Roseman, 2000).
Another study was conducted to assess bacteriuria present among those with spinal cord injury living in the community. A review of 287 participants indicated that there were 706 gram-negative bacterial findings resistant to antimicrobial medications in 444 urine specimens. Those with higher rates of medication-resistant infections were males under 45 years of age and those with condom or indwelling catheters. The infection rate among the sample did not increase in relation to longer periods of disability (Waites, Chen, DeVivo, Canupp, & Moser, 2000).
Another study examined the types of urinary management methods used with spinal cord patients. Indwelling catheterizations were used on 86% of clients upon admission to rehabilitation; most, however, changed to clean, intermittent catheterization by discharge. Fifty-two percent resumed the use of indwelling catheterization post-discharge, most frequently by those with tetraplegia, complete injury, or who were female. Infrequent use of intermittent catheterization was associated with spasticity, incontinence, lack of female external catheter systems, and dependence on caregivers. This study supported the concept that urinary self-care management systems are modified over time to meet individual needs (Yavuzer et al., 2000).
Reviewing the literature helped select the article topics for the Web site. The two review panels agreed on the major health concerns identified through the literature review.
The Potential of the Internet to Assist Individuals by Providing Self-Care Education
Changes in healthcare systems and an increased demand for information require new approaches for educational strategies for spinal cord injury programs (VanBiervliet, 1999). Interactive tools such as the Internet are useful ways to communicate health information to consumers and professionals. These educational programs must be based on sound design and educational principles and contain current, accurate information. Healthcare providers have the responsibility to assist clients in locating, evaluating, and using health information on the Internet. The Internet can provide information to promote healthy behaviors and self-care and make informed healthcare decisions (Houston & Ehrenberger, 2001). Healthcare professionals stress the need for high-quality information for consumer use (Brooks, 2001; Smith, et al., 2002; Ullrich & Vaccaro, 2002); the Internet can be a reliable and relevant source of education for the consumer (Hendler, 2000). Internet content can provide guidance, information, and encouragement for consumers with geographic or time restrictions. In addition, the Internet is useful for those with limited access to information due to distances, family responsibilities, lack of transportation, or lack of resources (Bacon, Condon, & Fernsler, 2000). These studies offer further evidence of the usefulness of the Internet as an educational tool for those with limited access to libraries or other traditional resources.
Determining Reading Level
The average reading level of Internet users is between 6th and 12th grade. Furthermore, the recommended reading level for Internet content geared to the general public is the 8th-grade level (Oermann & Wilson, 2000). These findings were used as a guide in creating the Web site’s format, which was designed to be user friendly in terms of content, reading level, cultural sensitivity, and language.
The Need to Offer Health-Related Articles in Spanish
A 2001 report by the Pew Internet & American Life Project indicates that the Internet is an appropriate resource for bilingual health information. The report noted that 50% of Hispanics 18 and older use the Internet. This represents 11 million Hispanic adults with Internet access, a 25% increase in the population from March 2000 to February 2001 (Spooner & Rainie, 2001). Statistics such as these point to the rising number of Spanish-speaking individuals who seek healthcare information on the Internet.
Summary from the Literature Review
Review of the literature confirms the existence of significant, self-care difficulties for people with spinal cord injury and the growing potential of the Internet for persons in the community to find reliable health information. The review of the literature also established the need to develop Spanish-language materials.
Orem’s self-deficit theory was used as the framework for this study (Orem, 1995). Orem, a theorist, wrote that nursing care was necessary for those who are completely or partially unable to perform therapeutic self-care due to illness or injury. Part of the professional nurse’s responsibility is to assist the client by fostering education and skill development with the goal of client self-direction and self-management. One category of health-deviation self-care requisites is learning to live with the effects of injury or illness, which includes being aware of diagnostics and treatments. Using Orem’s supportive-educative system, nurses can help teach the necessary information and skills for effective self-care. Internet education, provided by rehabilitation nurses, has the potential to fulfill the continuing learning needs of self-care for those with spinal cord injury who live in the community.
The following principle of adult education was used to guide the study: Adults identify their needs for education on health issues and seek information to fulfill their learning needs (Knowles, 1984). This principle dictates that consumers select urinary management information individually to fulfill needs for self-care. The Internet can be especially convenient for those with disabilities, for whom access to common resources can be severely limited.
The Web site designed for this study recognized the potential of the Internet as a resource for health information, including the need for bilingual materials; the advantages of this medium for people with disabilities whose needs are long term; and Orem’s theories concerning the promotion of self-care, complemented by principles derived from adult education.
The Web site consisted of a page of introduction to the research study, a menu to select articles by topic, 18 English-language articles on urinary management that the investigator wrote (nine of which were translated into Spanish), and an evaluation form on the level of satisfaction for the information presented in the articles. The introduction information and the evaluation form were also available in Spanish. The purpose of the articles was to furnish client education on common problems with urinary self-care management for those with spinal cord injury. The goal of the study was to promote current, self-care knowledge through articles that were limited to 1–2 pages so they could be easily used as a convenient self-care reference. Topics of the articles included latex allergies and catheters, cleaning drainage bags, cleaning catheters at home, cranberry juice and urinary infections, kidney and bladder stones, and common laboratory tests for the urinary system. A complete title list is shown in Table 1. The articles were written at the 8th- to 10th-grade reading level, which was determined by the language-level function of the word processor. The articles were based on a review of the current nursing and medical literature and consisted of written text, six of which were illustrated.
The two review panels critically reviewed the articles. The consumer reviewer panel consisted of three men who had spinal cord injuries for a minimum of 20 years each. One man was employed as a rehabilitation counselor, one as the manager of a urinary product company, and one as an engineer. The rehabilitation nurse review panel consisted of five nurses who either had a CRRN designation or worked as a rehabilitation nurse. The education level of the nurses ranged from those who had a nursing diploma to those who had a PhD in nursing. Members of both panels reviewed the articles for content, topic, and accuracy. After the investigator revised the articles according to the reviewers’ critiques and suggestions, the articles were posted on the Web site.
Both panels selected the nine articles that were to be translated from English to Spanish and back to English for accuracy. The main criterion for article selection was relevance in self-care. The articles in Spanish and English had the same purpose, content, and reading level and relatively similar lengths. The number of translated articles was limited to nine due to translation costs, which were limited by the grant. The translators for the Spanish articles were certified as medical translators in Spanish-English translation and had a Latino background. They not only translated the articles but also reviewed them carefully for cultural sensitivity in terms of language and content.
The Web master developed a method that tracked the number of times a reader entered the Web site and differentiated between those who read the English articles and those who read the Spanish articles. Because the satisfaction ratings were expressed in a numerical format, identifying the evaluator as Spanish or English was not possible.
The site was marketed using a professionally designed flyer, which was mailed to all significant national and local organizations that conduct research for or provide assistance programs to persons with spinal cord injury. This included the Christopher Reeve chapters, National Spinal Cord Association chapters, Paralyzed Veterans of America chapters, the Disability Services Office at Arizona State University, and members of the Association of Rehabilitation Nurses. The flyer provided information about the goal of the project, members of the review panels, the topics of the articles, the titles of the articles in English and Spanish, and the Web site address.
Data on Web site visits and levels of satisfaction with the articles were tracked for a 13-month period. A box on the home page requested that consumers complete an evaluation of their satisfaction with the articles. This evaluation was presented in both English and Spanish, although the responses were recorded numerically, with 1 being the lowest rating of satisfaction and 10 being the highest rating of satisfaction. This format was chosen to follow the findings of Burns and Grove (1997), who stated that a numerical rating scale was commonly used by the general public. In this part of the site, consumers were also able to add comments regarding any aspect of the site.
The answer to the research question as to whether the Internet is an effective source for health education was determined using descriptive statistics. The mean and standard deviations were based on 52 consumers who completed the rating scale. The mean satisfaction rating was 8.02, with a standard deviation of 1.38. Comments added to the rating form were in the following categories: suggestions for new topics, recommendations based on personal experience, and comments regarding commercial products for urinary management.
To answer the research question concerning the differentiation of use of the health-focused articles presented in English or Spanish, there were 1,162 hits on the Web site. The majority of the hits were for the Spanish articles (n = 811, 69.79%, compared to hits for the English articles, n = 351, 30.21%). A “hit” was defined as each time a consumer entered the Web site using either English or Spanish.
Results of the study indicated a much higher level of consumer use of the nine articles in Spanish, compared with the 18 articles in English. These findings support research showing that Internet information should be user friendly and bilingual (Hendler, 2000). Not only does this finding confirm other reports that Spanish speakers will access health information available to them in their native language, it might also suggest a great need for Spanish-language health information on self-care for those with spinal cord injury.
These findings add support to the research showing that many consumers seek health information on the Internet (Fiel, Glasgow, Boles, & McKay, 2000; Finfgeld, 2000; Madden & Fox, 2006; Niewijk & Weijts, 1997; Weiler & Pealer, 2000; Weinert, 2000). The findings are also consistent with other reports that the Internet is a convenient resource for those with limited access to libraries or other traditional sources of health information (Bacon et al., 2000). Further research will involve developing the ability to compare project evaluations of those using the Spanish articles and those using the English articles, so the self-care needs of both groups can be better managed.
The relatively disappointing number of consumers (52) who completed the rating scale and added comments needs to be further explored. While articles could be accessed with only a few keystrokes, the rating scale may have been too cumbersome for those with physical disabilities—especially of the upper extremities—to access comfortably. A Web site design with fewer keystrokes could encourage consumers to complete many more evaluations, comments, and suggestions for improvement. In addition, the investigator can do further research to determine whether more consumers would rate the site if the purpose of the rating scale and assurances of anonymity were made more explicit. One recommendation was that disclaimers in English and Spanish assuring the privacy of e-mail addresses should have been added.
Using the Internet as an educational tool, rehabilitation nurses can fulfill their responsibility to foster a supportive-educative role for consumers beyond inpatient rehabilitation (Orem, 1995). This approach puts into practice Orem’s theory that a professional nurse has the duty to assist the client by fostering learning and skill development with the goal of self-direction and self-management. Given the rising numbers of English- and Spanish-speaking individuals who access the Internet for healthcare information, rehabilitation nurses can help meet the needs of individuals in the community who live with spinal cord injuries and their caregivers to enhance their self-care knowledge by encouraging them to consult the Internet for relevant information.
The Internet gives rehabilitation nurses the opportunity to meet the challenge of providing continuing education. Topics for healthcare information in both English and Spanish could be expanded beyond urinary self-care management to meet other knowledge deficits of those with spinal cord injury who live in the community.
These findings also demonstrate the consumer need for culturally sensitive health information in the native language of the consumer. The translators for the nine Spanish articles were particularly sensitive to the language used in the translations from English to Spanish and thus helped ensure cultural acceptance of the information. The changing health status of consumers and advances in healthcare require current, accurate, user-friendly information that is responsive to evolving demographics.
I would like to acknowledge the consumer review panel: James Hemauer, Michael Warshawsky, and Gary Hershey. I would also like to acknowledge the support of the nurse review panel: Barbara Wiggins, RN PhD CRRN-A; Kimberly Vana, RN MSN FNP; Arleen Williams, RN CRRN; Elaine Kaus-Marmion, RN; and Anita Maglisceau, RN CRRN. I would also like to thank Ana Bamaren and Maria-Eugenia Bambaren, the project translators.
The original Web site no longer exists; however, some of the articles in Spanish are available on at http://nursing.asu.edu/swb under “Faculty Works.” The Mentor Award given by the Rehabilitation Nursing Foundation funded this research study.
About the Author
Barbara Brillhart, PhD RN CRRN, is an associate professor at Arizona State University, College of Nursing. Address correspondence to her at firstname.lastname@example.org.
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