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Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e31829dba61
Article

Usage and Design Evaluation by Family Caregivers of a Stroke Intervention Web Site

Pierce, Linda L.; Steiner, Victoria

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Author Information

Questions or comments about this article may be directed to Linda L. Pierce, PhD RN CNS CRRN FAHA FAAN, at l.pierce@utoledo.edu. She is a Professor at the College of Nursing, University of Toledo, OH.

Victoria Steiner, PhD, is an Associate Professor at the College of Medicine, University of Toledo, OH.

The authors declare no conflicts of interest.

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Abstract

Background: Four of five families are affected by stroke. Many caregivers access the Internet and gather healthcare information from Web-based sources.

Design: The purpose of this descriptive evaluation was to assess the usage and design of the Caring∼Web site, which provides education/support for family caregivers of persons with stroke residing in home settings.

Sample and Setting: Thirty-six caregivers from two Midwest states accessed this intervention in a 1-year study. The average participant was 54 years old, White, woman, and the spouse of the care recipient.

Methods: In a telephone interview, four Web site questions were asked twice a month/bimonthly, and a 33-item survey at the conclusion of the study evaluated the Web site usage and design of its components. Descriptive analysis methods were used, and statistics were collected on the number of visits to the Web site.

Results: On average, participants logged on to the Web site 1–2 hours per week, although usage declined after several months for some participants. Participants positively rated the Web site’s appearance and usability that included finding the training to be adequate.

Conclusion: Web site designers can replicate this intervention for other health conditions.

In the United States, over 6 million individuals have survived a stroke, affecting four of five families (National Stroke Association, 2012). Consequently, there is a need for persons with stroke and their family caregivers to have access to reliable information about stroke and caregiving. More than 200 million people in this country use the Internet (Internet World Stats, 2011) and gather healthcare information from Web-based sources. In a study of 1,480 caregivers by the National Alliance for Caregiving (NCA), 50% of them had searched for Web-based information related to caring for loved ones (NCA, 2009). In addition to measuring usage, it is also important to evaluate the design of these intervention Web sites (Palmer, 2002), because they will not be accessed if patients and/or caregivers do not like or cannot easily use them. Researchers and Web developers need to evaluate usability and design of Web sites, instead of simply examining outcomes of Web-based interventions.

Design of a Web site includes its appearance and usability. Appearance incorporates a Web site’s color and layout. Usability means that a Web site is easy to navigate and use (Net Success 2000 Plus Inc., 2011; Nielsen & Norman, 2000). Over the last decade, examples of evaluation of the usage and design of Web-based interventions for patients include (1) nutrition and physical activity enhancement (Oenema, Tan, & Brug, 2005; Steele, Mummery, & Dwyer, 2007), (2) alcohol consumption (Linke, Brown, & Wallace, 2004) and smoking (An et al., 2008), (3) diabetes (Gerber, Solomaon, Shaffer, Quinn, & Lipton, 2007; Glasgow et al., 2011) and asthma management (Boyd & Archer, 2007), (4) eating disorders prevention (DeBate et al., 2009; Zabinski et al., 2001), and (5) women’s health education (Hill & Weinert, 2004). Examples of evaluation of the usage and design of Web-based interventions for caregivers of patients include (1) traumatic brain injury (Rotondi, Sinhule, & Spring, 2005), (2) mental illness in children (Scharer, 2005), (3) dementia (Chang, 2004), (4) heart failure and transplantation (Dew et al., 2004; Evangelista et al., 2006), and (5) stroke (Korner-Bitensky et al., 2008; Rochette, Korner-Bitensky, Tremblay, & Kloda, 2008; Steiner, Pierce, & Herceg, 2004). The purpose of this report is to describe an evaluation that assessed the usage and design of the Caring∼Web site. Caring∼Web is an online intervention of education and support for stroke caregiving families residing in home settings. This evaluation brings together subjective and objective data from surveys that family caregivers completed.

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Review of Selected Literature

Usage and Design

Some researchers have used total visits to a Web site (Chang, 2004; Gerber et al., 2007; Glasgow et al., 2011; Linke et al., 2004; Rotondi et al., 2005; Scharer, 2005) as well as visits to each section or component of the site (An et al., 2008; Chang, 2004; Glasgow et al., 2011; Rotondi et al., 2005) as an objective measure of usability. Other objective measures included time spent on the site (Glasgow et al., 2011; Hill & Weinert, 2004) and number of messages posted (Dew et al., 2004; Scharer, 2005). Time of day that the site was accessed was also analyzed by others (Gerber et al., 2007). Subjective data collected from Web user surveys have also been used to evaluate different Web-based interventions. Participants in various studies have been asked to self-report their usage of a site (Chang, 2004; Dew et al., 2004).

Users have been asked about design and their satisfaction with the sites, rating the Web sites in general as well as its sections or components (Evangelista et al., 2006; Oenema et al., 2005). Subjective surveys have asked users to rate the appearance of the site including its layout and graphics (Linke et al., 2004). Participants have also been asked to rate a discussion group moderator and the group’s format (Zabinski et al., 2001). Users have been asked about the ease of use (Dew et al., 2004; Rotondi et al., 2005), their ability to navigate the site and its sections, and if they needed assistance (Evangelista et al., 2006). In addition, users have been asked to rate the importance or helpfulness of the sites (Evangelista et al., 2006; Hill & Weinert, 2004; Linke et al., 2004; Rotondi et al., 2005; Steele et al., 2007).

In addition to surveys, focus groups and navigational tasks have been used to evaluate usability. A prototype Web-based training program for oral healthcare providers was evaluated for Web site color scheme, organization, and content through focus groups (DeBate et al., 2009). Usability tests were also run by observing the participants complete several navigational tasks on the Web site (DeBate et al., 2009). A Web-based educational program for people with asthma in rural communities was developed and evaluated through human–computer interface testing (Boyd & Archer, 2007). Participants were observed while completing a series of set tasks within the Web site. User interface management software and dialog about these were used to analyze the Web site navigability (Boyd & Archer, 2007).

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Usage and Design of Stroke Web Sites

Various methodologies have also been used in evaluating stroke Web sites. Two studies on StrokEngine focused on usability, navigability, and quality of this Canadian Web site (Korner-Bitensky et al., 2008; Rochette et al., 2008). StrokEngine is an evidenced-based stroke rehabilitation intervention Web site designed to provide convenient access to the current knowledge about stroke to researchers and clinicians (Korner-Bitensky et al., 2008). In the first study, 19 rehabilitation clinicians searched a well-known stroke Web site, searched StrokEngine, and performed a free search as they typically would, for example, Google, with the order of search randomized, to compare usability and navigability of the sites. A satisfaction questionnaire, developed from an extensive review of the literature that identified items important to include in Web site evaluation, was then administered. All clinicians gave the highest global usability score to StrokEngine. In addition, they ranked StrokEngine’s navigability above or equal to the “respected Web sites” and higher than the free searches (Korner-Bitensky et al., 2008).

In the second study by Rochette and associates, they discussed the development of StrokEngine-Family, a Web site for stroke rehabilitation for laypersons that presents treatment options based on scientific information. Its usability was assessed with individuals who had experienced a stroke and their families. They looked at the homepage, reviewed two educational modules, and then completed a telephone interview that asked closed-ended and open-ended questions. All seven respondents reported that they were very satisfied overall with this Web site. StrokEngine-Family was found to be easy to use, and its content was found to be useful. Two respondents that had previous strokes felt the information would have been helpful when they had their strokes (Rochette et al., 2008).

Steiner and associates assessed the appearance and usability of Caring∼Web, a Web-based education and support intervention for caregivers of individuals who survived a stroke, before its use in a randomized clinical trial (RCT) in Ohio and Michigan that examined family caregivers’ experiences in caring. Steiner and associates surveyed 35 adult novice computer students from a community college to rate the design, content presentation, technical elements, and credibility of the Caring∼Web site on a 5-point Likert scale, with 1 = poor (the attribute was weakly observed) and 5 = exceptional (the attribute was strongly noted). Novice computer students were chosen because the content related to stroke and caring on the Web site was not evaluated at that time. On the basis of descriptive statistical analyses, this site was rated high overall with a mean score of 4.5 of 5.0. The content presentation was rated highest with a mean score of 4.7, and the credibility scored lowest with a mean score of 4.2. The respondents perceived that Caring∼Web was easy to navigate and understand; however, they made a number of suggestions to improve the Web site. Elements added because of this assessment were a frequently-asked-questions section; joke of the day; fun activities including word games, news, and weather; increased font size and use of color; and more topic menus and drop-down boxes (Steiner et al., 2004).

This current Web site and design evaluation is a more comprehensive assessment of the Caring∼Web stroke intervention Web site and a secondary analyses of data from the RCT. Although it was not a major goal of the RCT, evaluation of the usage and design of the Web site provides additional information on how participants used the Web site. The findings from the RCT are reported in other publications (Pierce, Steiner, Govoni, Thompson, & Friedemann, 2007; Pierce, Steiner, Khuder, Govoni, & Horn, 2009).

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Methods

The Intervention

Caring∼Web was built in collaboration with university Web site designers to provide support through four primary components: (a) a nonstructured email discussion, Caretalk, via a mailing list that connects the caregiver with other caregivers and the nurse specialist; (b) an opportunity to email a nurse specialist backed by an interdisciplinary rehabilitation team, called Ask the Nurse, to ask any questions or discuss issues related to caring; (c) educational links to information about stroke, caring, and caregivers from reputable Web sites; and (d) customized educational information, such as nutrition or caregiver stress, provided in a monthly educational tip format (Steiner & Pierce, 2002). Other activities such as games; music; jokes; greeting cards; general and stroke-related news linked from newspapers, television stations, and Med/wire News, including weather and sports information; and the Internet Public Library are available on the site (Steiner & Pierce, 2002). With the approval of university and hospital institutional review boards and the adherence to guidelines for the ethical conduct of research, caregivers of persons with stroke were enrolled in the RCT and the Web users’ group had access to the Caring∼Web intervention for a year. Only with a username and password could these participants access the secured Caring∼Web site, day or night (Pierce et al., 2007, 2009).

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Sample

Adult caregivers of persons with first-time stroke living in northern Ohio and southern Michigan were recruited for the RCT after hospitalized rehabilitation treatment of their care recipients (Pierce et al., 2007, 2009). All caregivers were able to read, write, and understand English; had a telephone; and were novice Internet users. Fifty-one caregivers were randomly assigned to the experimental group of Web users (Pierce et al., 2007, 2009). Thirty-six of the fifty-one Web users completed the yearlong RCT.

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Procedures

Web users could choose to use their own computer with Internet access purchased by the investigators or choose to use MSN WebTV to connect to the Internet through their televisions. MSN WebTV is easy for novice Internet users to learn and employ and rarely gets attacked by viruses. At the time of the RCT, it was a low-cost system of approximately $100 plus a monthly service fee of about $25.00 that was paid for Web users by the investigators. A computer technician installed the MSN WebTV equipment and provided training for all Web users. A printer was also provided and installed, so that Web users could print educational information from the Web site to conveniently read when they were not online. A training manual was developed by the investigators to orient the Web users to the specific components of Caring∼Web accessed via MSN WebTV or their own computer and how to use the printer. The computer technician was available to all Web users by telephone during the day for troubleshooting technical difficulties (Pierce et al., 2007, 2009).

As part of the RCT, both objective and subjective evaluation data focused on the Caring∼Web site were gathered and examined by the investigators with descriptive analysis methods. Objective usage data on the total visits to the Web site were collected. Subjective data were gathered from bimonthly questions and a final survey, as part of a regularly scheduled telephone interview regarding the participants’ experience of caring. These questions were constructed based on previous pilot data and were independently reviewed by experts in the field for content validity (Pierce et al., 2004).

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Measures

The four bimonthly questions centered on how often participants visited the educational-links Web pages, the type of information they looked for or found, if they had technical problems, and if so, a description of the problem. These questions were added because it was thought that the participants might not remember what happened if only the survey was asked at the end of their year of participation.

The survey contained 33 questions. These questions covered visual elements of the site, ease of use, quality of the training, technical problems, and use of Caring∼Web’s individual components. Most of the questions used a 4-point scale, beginning with a score of 1 = strongly agree to 4 = strongly disagree. Other questions involved time spent on the individual components during the entire study and were also on a 4-point scale with 1 = less than once a week, 2 = once a week, 3 = more than once a week, and 4 = never. Still, another question focused on asking users how many hours per week they accessed Caring∼Web, with 1 = less than an hour, 2 = 1–2 hours, and 3 = more than 2 hours. Finally, a few questions were open-ended to ascertain the type of information they sought on Caring∼Web and the linked Web sites they accessed.

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Results

Results for the bimonthly and survey questions are interspersed throughout the following sections.

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Participants

Thirty-six Web users completed the RCT and its bimonthly interviews plus the Web site evaluation survey. Five Web users chose to use their own computer with Internet access, whereas the rest of the Web users chose to use the MSN WebTV. The typical Web user was a woman, the spouse of the care recipient, about 54 years old, had 13 years of schooling, and was White (see Table 1; Pierce et al., 2007, 2009).

Table 1
Table 1
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Usage

There were 7,121 total visits to the Caring∼Web intervention Web site. Most participants visited the site around 10–15 times per month, although a few were more frequent users of the site. An analysis of the survey data revealed that, on average, participants used the Caring∼Web intervention 1–2 hours per week. However, Web site usage declined after several months. One caregiver participant shared why his usage was initially higher: “Before my wife had the stroke, I didn’t know anything about…stroke. The nurse (other professionals) and people in the group have helped me tremendously.”

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Design

Overall, most of the participants rated the Caring∼Web site positively.

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Appearance

All the participants agreed or strongly agreed that they liked the way the Web pages looked. Visual components of Caring∼Web site, such as print size and colors, were rated favorably (see Table 2).

Table 2
Table 2
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Usability

Thirty-one (86%) of the participants agreed that the services from Caring∼Web were needed. All of the participants agreed or strongly agreed that they were satisfied with Caring∼Web. All but one of the participants (97%) said that they would recommend Caring∼Web to a friend caring for a person with stroke. Thirty-three participants (92%) indicated that the directions on the Web pages were clear. Thirty-four participants (94%) also reported that it was easy to move around the site.

The participants felt that they were trained well, had few technical problems, and found the users’ guide easy to follow and helpful (see Table 2). Some participants reported trouble with passwords and signing on. Occasionally, the MSN WebTV network or other service providers were down for a period of time, keeping participants from accessing the Caring∼Web site. A few issues resolved themselves without any effort by the participant. Restarting a program or rebooting the machine was also helpful in most cases. Most of the responses to the question about technical problems involved issues related to the slow speed in moving around the site and taking a long time to load the Caring∼Web site in their Web browser on their own personal computer. Participants forgot to change batteries in the MSN WebTV keyboards, which accounted for some of the complaints concerning this equipment. Participants also mentioned printer problems such as putting paper in, changing ink and toner cartridges, and simply not working. However, the computer technician was able to troubleshoot the problems over the telephone. All problems that the participants had with the equipment, directions for use, or the Internet service provider were resolved.

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Usage and Design of Specific Intervention Components

Fifteen participants (42%) posted to Caretalk, the nonstructured discussion group, less than once per week, whereas seven participants (19%) never posted at all. However, eight participants (22%) posted once per week, whereas six of them (17%) posted more than once per week. One participant said that she felt uncomfortable with Caretalk, believing that she was “partaking in gossip and being nosey.” Twenty-nine participants (76%) stated that they strongly agreed or agreed that they learned a lot from Caretalk. More than once per week, 15 participants (42%) reported that they read messages on Caretalk without responding. Only seven participants (19%) reported problems using Caretalk. Participants choosing to use their own computer equipment noted the most problems with Caretalk because different Internet service providers were used to access the site. The personal-computer participants were also vulnerable to viruses affecting their ability to participate in the Caring∼Web intervention and its components.

Participants were encouraged by the nurse specialist to use Caretalk to ask their questions so that all caregivers could learn from the answers. Consequently, 27 participants (75%) used “Ask the Nurse,” where caregivers could ask specific questions to the nurse specialist, less than once per week, whereas seven participants (19%) did not use it at all. Although seven participants did not use “Ask the Nurse,” some of them still rated its usefulness. Thirty-three participants (92%) stated that they learned a lot and had all their questions answered. Only two participants (6%) reported any problems in using “Ask the Nurse.” These two caregivers felt that their questions were not adequately answered by the nurse specialist.

On average, the participants used the educational links or information from other reliable Web sites once per week during the yearlong RCT. Thirty-one participants (86%) strongly agreed or agreed that they learned a lot from the educational links. Thirty-four (95%) participants thought that the educational links pages were easy to use. Participants said that they were looking for information on coping with life after the stroke that included (1) dealing with the health-related deficits of their care recipient (person with stroke), (2) making life as normal as possible, and (3) adjusting to the changing relationship of the caregiver and care recipient. In addition to these health-related topics, participants also accessed news and information on hobbies such as cooking, family trees or genealogy, gardening, and games. Some participants responded that they did not search for topics because of having limited time in their busy schedule. However, all participants agreed that they read the customized monthly educational tips and printed them.

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Discussion and Conclusion

The usage, as well as design, of Caring∼Web was evaluated via objective methods, visits to the Web site as well as subjective bimonthly questions and a survey asked in a telephone interview. Caregivers accessed many educational links that helped them cope with life after stroke. Information on stroke prevention, health maintenance, medications, comorbid conditions as well as adaptive equipment was helpful to these caregivers. Web sites, which helped caregivers maintain a satisfying interpersonal relationship with the care recipient, such as links to information on sexuality, depression, and anxiety were used but could also be expanded by revising the Caring∼Web stroke intervention Web site. These findings reflect that caregivers are reaching out to access healthcare information through the Internet; however, these caregivers also wanted information that lightened their burden of caring for a loved one (NCA, 2009). Caregivers enjoyed a wide variety of links related to news and hobbies. Exemplars include links to weather, news, jokes, and games that aided the caregivers in sustaining their daily routine and thus maintaining as normal of a life as possible.

As shown by this evaluation, training caregivers to use Web sites or equipment is important, especially with novice users. Caregivers in this RCT were offered the free use of MSN WebTV or the use of their personal computer. Most of the technical problems experienced were related to the caregivers’ own computers and email systems of which the investigators had little control. However, technical support was provided for these caregivers and was found to be helpful. Although caregivers were given a user’s manual, “help” and/or “how to” videos could also be incorporated onto the Web site in the future for troubleshooting problems.

Caregivers reported having limited time in their daily schedules to spend on Caring∼Web and to access all its components. Current technology, such as mobile access devices (e.g., smart phone, iPod, or iPad), would provide immediate access to the site. Caretalk and “Ask the Nurse” could be engaged through voice, email, or text messages on these devices. Although some questions may be answered with a brief text response, other more sensitive questions may require other means of communication, such as in-depth email responses. Adding a quick reference link to the most discussed topics on the Caretalk or “Ask the Nurse” components and the most used educational links and/or monthly educational tips would also be of benefit for caregivers.

Similar to other stroke Web sites (Korner-Bitensky et al., 2008; Rochette et al., 2008) and previous assessment of the Caring∼Web intervention Web site with adult computer students (Steiner et al., 2004), the results of this evaluation found Caring∼Web to be a helpful stroke intervention Web site. Caring∼Web was found to be easy to use and to contain valuable content (Steiner et al., 2004). Caring∼Web provided an engaging atmosphere within a supportive environment that helped these family caregivers feel comfortable in caring for persons with stroke. On the basis of the RCT findings, these caregivers gained needed information for challenging situations that arose and also identified useful life coping strategies for providing care (Pierce et al., 2007). Caregivers used each of the intervention components and rated them highly, perhaps indicating that a multicomponent intervention is more beneficial than a single factor intervention (Gitlin et al., 2003).

A limitation of this evaluation is that the caregivers’ very positive ratings about the Web site may be in part because of the fact that they were interviewed by the same interviewer over the yearlong RCT and this relationship may have caused them to be less critical in their rating of the Web site. Another limitation of this evaluation is that these results may not be representative of a larger group of caregivers who could use Caring∼Web, because these caregivers were mostly of the same ethnicity and from only two Midwestern states. Regardless, this information can be used to alter the Caring∼Web for future use. Finally, the visits data were not archived after the RCT was completed, and consequently, further analyses with these data are not possible.

Similar to other studies, this Web site’s usage and design evaluation employed a subjective survey (Dew et al., 2004; Evangelista et al., 2006; Rotondi et al., 2005). Because of the limitations indicated, future research could be done with more diverse focus groups or navigational tasks (Boyd & Archer, 2007; DeBate et al., 2009). Because Web site usage declined over time, focus groups could be conducted to determine what they liked about a site design as well as what would help keep caregivers engaged in an intervention or if they may not need an intervention as often once they are more experienced caregivers (DeBate et al., 2009). Navigational tasks could also be a more objective measure of ease of use of the site than the survey. These tasks could include observing caregivers while they search for information on depression related to caring for a person with stroke or how to decrease falls in the home (Boyd & Archer, 2007).

Knowing that these caregivers used Caring∼Web and evaluated the design of the Web site positively is particularly important because, upon completion of the RCT, the intervention was opened to everyone on the World Wide Web. The site is maintained by the university medical center and primarily marketed to its clients at discharge from the center. Two of the primary components, Caretalk and “Ask the Nurse,” are restricted to the center’s clients. During a recent 15-month period, there were 19,431 total visits to the site. Family caregivers, as well as healthcare providers, can access Caring∼Web anytime at http://caringweb.utoledo.edu/ for general information related to dealing with stroke and its outcomes. Other Web site designers and healthcare professionals can also replicate this Web-based multicomponent intervention for other health conditions.

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Acknowledgments

The intervention used in this study, Caring∼Web, was supported by a grant (RO1 NR007650) from the National Institute of Nursing Research. Support for the implementation of Caring∼Web at the medical center was also provided by a Strategic Enhancement Award from the University of Toledo. The family caregivers are thanked for their participation. The contributions of our research team members as well as of Mary Peters, Kevin Weber, and Caren Oyor, our previous research assistants, are recognized. Sherry Andrews, Director for the Center for Creative Instruction at the university, is thanked for her technical review of this manuscript.

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Keywords:

caregivers; Internet; social support; stroke; telehealth intervention

© 2013 American Association of Neuroscience Nurses

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