Evaluation of a Web Site to Educate Women with Physical Disabilities about Reproductive Health

Evaluation of a Web Site to Educate Women with Physical Disabilities about Reproductive Health Maintenance

Presenter Name: Carol A. Howland, MS

Institution: Center for Research on Women with Disabilities, Baylor College of Medicine, Department of Physical Medicine and Rehabilitation

Primary Research Interests: Using the Internet for health education and research, Alternative therapies for managing menopausal symptoms of women with chronic conditions and disabilities, Models for integrating alternative therapies such as herbs and nutraceuticals safely and effectively with conventional medical therapies for people with chronic conditions and disabilities, Access to conventional and alternative health care for people with chronic conditions and disabilities

INTRODUCTION

Previous studies suggest that women with physical disabilities desire reproductive health maintenance information, but have difficulty finding accurate information that is relevant to their disabilities. They also encounter numerous barriers to accessing reproductive health care that accommodates their disabilities and secondary conditions such as autonomic dysreflexia. Such barriers tend to decrease compliance with recommended standards and schedules for getting well woman exams, pap smears, and mammograms, and lead to uninformed or inadequate contraception, pregnancy care, and detection and treatment of cancer and sexually transmitted disease. Women with disabilities entering menopause may be ill-equipped to participate in informed decision-making about options for relieving menopausal symptoms and associated midlife changes in health. Improving women's reproductive health maintenance knowledge also has the potential to empower women to inform their health care providers about ways that their disabilities and secondary conditions affect their reproductive health. They are also empowered to suggest techniques to their providers to decrease disability-related symptoms that could interfere with the physical examination and evaluation process.

Use of the Internet as a source of health information has mushroomed over the past five years, paralleling declining costs of computers and Internet subscriptions, improved user friendliness of Internet browsers, and increasing experience using computers at home, work, and school. Recent studies suggest that computer Internet usage by persons with disabilities is also growing, but at a slower rate than in the general public, despite its potential to be an ideal communication medium for persons whose functional limitations restrict their ability to use other information resources. In NCDDR surveys of computer and Internet use (Kaye, 2000), 61% of consumers with disabilities selected the computer as their preferred means of receiving information compared with only 25% in 1997. Similarly, 65% of consumers reported using the Internet regularly vs. 26% in 1997. Fewer people with work disabilities (24%) had a computer at home compared to persons with no disability (52%), which makes finding Internet access difficult. Historically, women and minorities have had less access to the Internet than white men, though these gaps are beginning to narrow. Decreased use by these groups likely reflects disadvantaged economic status and the lack of training opportunities commonly provided by employment outside the home. We sought to overcome this obstacle and facilitate their ability to become study participants by suggesting sources of free access to the Internet.

RESEARCH OBJECTIVE/RESEARCH QUESTION

The purpose of this study was to develop and evaluate the effectiveness of instructional modules on the Internet in improving reproductive health care knowledge and behaviors among women with physical disabilities. The research questions were:

  1. Among women with physical disabilities, what is their current knowledge level of reproductive health?
  2. How does that knowledge change after touring an Internet site on reproductive health maintenance?
  3. How durable is this knowledge change over time?
  4. How do reproductive health maintenance behaviors change over time after receiving information over the Internet?

METHODS

For the purposes of this study, we used the term "reproductive health" to cover the entire span of a woman's reproductive cycle from menstruation through menopause. We felt the commonly used term of "women's health" was too broad to describe primarily gynecologic care issues and would lead participants to expect information on a wider variety of women's health issues.

A web site consisting of seven instructional modules on 1) the well woman exam, 2) autonomic dysreflexia, 3) the breast self-exam, 4) contraception, 5) sexually transmitted disease, 6) menopause and related midlife health issues, and 7) finding a health care provider, a list of references, questionnaires to assess pre- and post- knowledge tests and health care compliance behaviors, experience using the Internet, other sources of reproductive health information consulted, and quality of the web site, was developed. This web site was reviewed by a team of consumers, gynecologists, and researchers, revised according to their comments, and pilot tested along with Internet instruction letters on ten women with disabilities from a variety of socioeconomic and disability backgrounds.

More than 300 women were recruited nationwide through flyers and news releases describing the study and sent to CILs, newspapers, listserves, and numerous organizations for persons with a variety of physical disabilities, databases of women who had participated in previous CROWD studies, and consenting participants from the other RRTC studies. To be eligible to participate in the study, women had to: 1) be at least 18 years of age, 2) have access to the Internet, and 3) have a physical disability that impairs mobility or self-care. To expand options for accessing the Internet by economically disadvantaged women who did not own a computer, we made suggestions about alternative access sites such as libraries, CILs, schools and universities, and Internet cafes.

A pre-test, post-test design was used to test the effectiveness of the instructional intervention. We mailed demographic questionnaires and Internet instructions to all 306 eligible women recruited nationwide. These women were randomly assigned to the intervention group (Group I) or to the control group (Group C). Women in Group I were given password access to a web site comprised of the instructional modules and all of the tests and questionnaires. Group C's password gave them access to a different web site that contained only the pre- and post-tests and questionnaires, but no access to the reproductive health modules. All participants' responses automatically transmitted electronically and anonymously to research staff's e-mail, identified only by a previously assigned ID number. The 178 participants who completed this first phase of the study received letters three months and nine months later instructing them in how to enter the web sites containing the follow-up knowledge tests and questionnaires. Each participant was paid ten dollars for each phase of the study she completed. Participants who completed the entire 9-month study also received a free copy of our 24-page booklet about "Reproductive Health Care for Women with Disabilities".

RESULTS

CHARACTERISTICS OF THE PARTICIPANTS

A total of 238 women returned demographic surveys, 178 women completed the initial pre- and post-tests, 98 women completed the three-month follow-up, and 138 women submitted the 9-month follow-up tests and questionnaires. The 178 women with disabilities who participated in the reproductive Internet study were generally well-educated, with 82.3% having at least some college education. Despite this high level of education, more than half, 56.4%, were unemployed, while 27.3% worked full-time and 16.3% part-time. This finding is consistent with prevalence of Internet usage in the general population, which tends to rise with education level. Annual household income ranged widely from 0 to $400,000. The participants ranged in age from 23 to 77, with a mean age of 47. More than half were currently married or living with a partner, while only 21.5% had never married. Twelve percent were women from minority backgrounds, primarily African American. The women in the study reported a variety of primary disabilities, identified as their most limiting condition, as shown in order of frequency in the table below. The age of onset of disability ranged from birth to age 74.

Primary Disability Number Percent
Joint and connective tissue disease 32 18.5%
Multiple Sclerosis 26 15.0%
Spinal cord injury 25 14.5%
Polio/Post-Polio 24 13.9%
Cerebral Palsy 13 7.5%
Muscular Dystrophy 9 5.1%
Amputation 7 4.0%
Traumatic Brain Injury 4 2.3%
Spina Bifida 3 1.7%
Stroke 2 1.2%
Other 28 16.2%


EXPERIENCE USING THE INTERNET

The participants were very experienced Internet users; 87.6% had been using the Internet for more than a year. There was greater variation in the amount of time participants spent using the Internet weekly; 41.2% reported that they used the Internet from 11-20 hours per week, 24.3% used it 6-10 hours per week, and 34.5% used it five or fewer hours per week. The participants used the Internet for a variety of activities. The most common uses were chat rooms (34.5%), shopping (27.1%), and browsing for information (21.5%). Very few used the Internet to get email (6.8%), for entertainment (8.5%), or for job activities (1.7%).

Nearly all (94.2%) of the women who completed the entire 9-month study had no problem finding a computer to use to participate in the study (not surprising, since those having difficulty are more likely to drop out of a study). It was easy for most participants to get into the web site (74.6%), though 17.4% had to try several times before they were able to get on, and 17.2% had to ask someone else for assistance or call our research staff for assistance. We fielded numerous technical call throughout the study to assist women who were having difficulty getting onto the web site. Typically, they made basic errors such as typing the URL address in the search space, or typing their personal name instead of the word we gave them for their username. These common errors were addressed in the follow-up instruction letters to facilitate subsequent Internet navigation. Once they got onto the web site, the women told us they had no difficulty navigating through the training modules and questionnaires.

HOW STUDY PARTICIPANTS USED THE INTERNET

Of the 55 women who completed the questionnaire about how they used the Internet while reading the training modules, the majority, 72.7% completed reading the materials and taking the tests in one or two sessions. The remaining quarter took from three to five sessions. The majority, 61.8% did not use the hyperlinks to consult a different web site for additional information about reproductive health. However, 14.5% linked to one other site, 10.9% linked to two sites, and 12.7% linked to from 3 to 6 additional web sites. Similarly, few participants, only 21.8%, looked up information from the materials and web sites listed in the reference section.

KNOWLEDGE

Women with disabilities participating in this study were fairly knowledgeable about reproductive health even before exposure to our web training, even though the test questions were designed to be sufficiently challenging to allow room for learning. The initial pretest score on the knowledge test was unrelated to age, income, and educational level. T-tests were run to compare mean pre-test scores between the two groups. No significant difference was found in mean pre-test knowledge scores between the intervention group ( M = 18.33, SD = 2.31) and the control group ( M = 18.51, SD = 2.30), t (175) = .503, p = .875. Although knowledge scores did not differ between the two groups at pre-test, 3 months, or 9 months, there were significant differences in scores over time within each group. Repeated measures analysis of variance on the intervention group's knowledge scores showed a significant cubic pattern). As depicted by Fig. 1, women with disabilities increased their knowledge immediately after reading information about reproductive health provided on a dedicated web site. However, this knowledge declined by 3 months and then stabilized. Somewhat to our surprise, the knowledge scores of women with disabilities who took the tests over the Internet, but were not given access to the reproductive health web site, also changed over time. They had a small but significant linear increase in knowledge gained over the same time period. A possible explanation is that the test questions motivated the women who didn't have access to our web site to seek answers to their questions elsewhere.

Line graph titled Estimated Marginal Means of Measure 1. Two groups: C [likely standing for Control] and I [likely standing for Intervention]. Progress was marked at 4 times. Time 1, control: approx. 18.52; Time 1, intervention: approx 17.7. Time 2, control: approx 18.52; Time 2, intervention: approx 20.5. Time 3, control: approx 18.9; Time 3, intervention: approx 19.4. Time 4, control: approx 19.2; Time 4, intervention: approx 19.1.

Fig. 1. Repeated measures comparison of knowledge test scores (Measure_1) at pre-test (time 1), post-test (time 2), 3-month follow-up (time 3), and 9-month follow-up (time 4) between the intervention group (upper green line I) and control group (lower red line C). Test scores could range from 0-25.

INFORMATION SOURCES CONSULTED

The participants consulted a wide variety of different sources of reproductive health information. The most frequently consulted sources were health care providers (53%), magazine or journal articles (45%), the Internet (42%), and others with disabilities (39%). Very few sought reproductive health information from libraries (6.5%) or videos (5%) during the study period. There were no mean differences between groups in the percentages who consulted any source of information outside the web site, the number of different sources consulted, and the total number of sources consulted. However, there was a trend for the intervention participants to consult a greater variety of information sources (M = 4) than did the controls (M = 3) at 9 months (p = .08).

HEALTH BEHAVIOR COMPLIANCE

Little progress was found in reproductive health behavior compliance because the vast majority of the women were already highly compliant with recommended guidelines in getting pap smears, mammograms, having manual breast exams by a health care provider, asking their provider for information about osteoporosis, and asking their provider for information about hormones. Pre-test findings revealed that 71% of participants had had a Pap smear over the past 12 months, 73% had had a manual breast exam by a health care provider, and 66% of the women who were age 40 or older had had a mammogram. There was no significant difference between the intervention and control groups at any time point, with one exception: at 9 months, those who'd had a Pap smear within the past year ; I = 80% vs. C = 57%; ?2 (3, N = 134) = 9.72, p < .05. However, nearly half (47%) of the total sample had performed no breast self-exams over the past 12 months. Only 12% were fully compliant in performing monthly exams. There was no significant difference between the two groups in doing BSEs at any time point, nor was there any significant change over time within either group in frequency of performing BSEs. By 9 months, the number of women doing BSEs at all had not significantly increased.

INTEREST IN, AND USEFULNESS OF, THE REPRODUCTIVE HEALTH TOPICS

When asked about their level of interest in the reproductive health topics discussed on the web site, the women expressed the greatest interest in the well woman exam, and menopause and associated midlife health issues. Interest in the other topics was more variable, depending on the relevance of the topic to each woman. For example, certain topics such as contraception would be relevant only to younger, heterosexual women, who had not had a hysterectomy, and managing autonomic dysreflexia during exams and pregnancy would apply only to the women with spinal cord injury. Likewise, the participants also found the sections about the well woman exam, breast self-exam, and menopause to be the most useful to them. Additional reproductive health topics that the women were the most interested in learning about in future web sites included alternative therapies for menopause symptoms, menstrual symptoms and PMS; solutions for resolving sexual problems; and sexual assault.

QUALITY OF THE WEB SITE

Fifty-six of the 76 participants who received the instructional modules and completed the nine-month follow-up answered the questions evaluating the quality of the web site. All but two participants (96.4%) rated the overall quality of the web site as excellent or good. Nearly all (96.4%) rated the writing style as excellent or good. Similarly, 92.9% rated the usefulness of the web site to women with disabilities as excellent or good. All but one participant (98.2%) found the material to be easy to read. Nearly all (96.4%) rated the appearance as good or excellent. Only one participant reported that the training modules were too complicated. Although a large majority (80.4%) felt the difficulty of the modules was about right, 16.1% found them to be so easy that they did not learn any new information.

CONCLUSIONS

Women with disabilities increase their knowledge of reproductive health with any exposure to the Internet. The participants in the current study generally found the training modules in our reproductive health web site to be interesting, useful, and easily understood. However, merely gaining knowledge was not sufficient to produce any significant change in health screening behaviors. This finding is consistent with the preponderance of health promotion literature; an intervention beyond providing knowledge is needed to produce health behavior change and maintain it over time.

The Internet can be an effective medium for increasing the knowledge of women with disabilities about reproductive health, but should be included as one of many accessible means of disseminating health information to women with disabilities. Additional qualitative research would be helpful in determining what influences women with disabilities to search for health information on the Internet.

The finding that less than half of study participants took advantage of using the hyperlinks within the training modules to obtain additional information about reproductive health could have several explanations. Some may have wanted to avoid taking additional time to complete the study requirements. For others, the content of the web site alone may have been adequate to give them the level and amount of information they needed to know about reproductive health. This explanation is supported by the relatively high evaluations respondents gave to the usefulness and interest level of the various topics. Having a web site dedicated to providing health information to people with disabilities all in one place that is specifically relevant to their disability may be a more efficient way for them to increase their knowledge and answer their questions in contrast to having to go to many different sources.

A single set of training modules on reproductive health cannot hope to meet the information needs at the appropriate level of difficulty for all women with disabilities. One solution is to create a web site with basic, intermediate, and advanced information options. Another option is to create a general reproductive health web site with topics that would be relevant to most women with disabilities, but with embedded hyperlinks to age-appropriate or specialty topic web sites for anyone who desires more in-depth information on a given topic, such as pregnancy, autonomic dysreflexia, or sexual functioning.

The recruitment process revealed a critical need to fund programs to increase access of women with disabilities to the Internet, particularly women from minority backgrounds and women with low incomes. Even a seemingly unrelated factor like marital status can affect computer access by increasing household income available for computer ownership and Internet subscription. A related need is funding of programs to train women with disabilities in how to use the Internet and where to obtain access to it. Possible solutions include providing free computer Internet access at CILs, libraries, churches, and other public facilities in the community. Providing culturally relevant health web sites in languages other than English, particularly Spanish and common Asian languages, would also improve access.

Implications

Research:

  1. More research is needed on alternatives to hormone replacement therapy for women with disabilities who are approaching menopause.
  2. More research is needed on what factors influence women with disabilities to seek reproductive and other health information on the Internet compared with print and other media.
  3. More research is needed evaluating the effectiveness of the Internet in conveying reproductive and other health information to women with disabilities compared with print and other media.

Policy:

  1. Funding is needed to increase free or low-cost computer and Internet access in the community for economically disadvantaged women with disabilities, at sites such as centers for independent living and libraries.
  2. To meet the information needs of the highest number of women with disabilities possible, reproductive health information needs to be disseminated through a wide variety of media, including, but not limited to, the Internet.
  3. Funding of web sites and other dissemination needs to be adequate to include translation into Spanish, as the Spanish-speaking segment of the U.S. population is growing rapidly.

Training/Intervention:

  1. Women with disabilities need training in how to use the Internet at beginner through advanced levels in order to take full advantage of the health education opportunities this medium offers.
  2. Materials that are too elementary will not meet the information needs of women with disabilities who have had higher education; conversely, complex materials may be too complicated for women with less than a high school education. Therefore, choices for more than one level of complexity should be offered for web-based dissemination.
  3. Different sets of reproductive health materials should be offered for young and midlife to older women with disabilities, as their information needs and health issues may be very different.

What Implications Do Your Research Or Training Project Findings Have For Changes In Concepts Of Health And Disability?

Women with disabilities are seeking accurate reproductive health information that takes into consideration their disabilities and secondary conditions. Providing this information for a single medium, language and culture, education level, or age group is insufficient to address the information needs of an increasingly diverse population.