ABSTRACT
Women in the U.S. and all over the world are more vulnerable to HIV/AIDS because of both behavioral and contextual factors. HIV/AIDS prevention education on government health websites plays an important role in reducing this health inequality for women. However, contrary to the assumption of Rimal and Real’s (2003) Risk Perception Attitude framework, women may not necessarily gain knowledge from the HIV/AIDS prevention information available to them on government health websites if they cannot find the information or do not like what they find. Using a theoretical framework extended from Rimal and Real’s (2003) Risk Perception Attitude framework, this research examines women’s information behavior, specifically information finding and reaction to information, on government health websites in the context of HIV/AIDS prevention.
In the empirical study, think aloud and structured individual interview were used to collect data from 40 female university students in the U.S. in their completion of an information seeking task and an interview. Factors that influence women’s information finding are concerned with information accessibility, including visibility, duplication, depth, retrievability and name of links. Factors that influence women’s reaction to information are concerned with information format and information content. The influencing factors concerning information format include language, interactivity, media use, and aesthetics. The influencing factors concerning information content include information quality, social construction, and perceived relevance. These influencing factors of information finding and reaction to information are potential barriers that could limit the knowledge women could gain from the HIV/AIDS prevention information on government health websites.
This research is among the few studies that specifically examines women’s information behavior on government health websites in the context of HIV/AIDS prevention. It has both theoretical and practical contributions. Theoretically, it challenges and extends Rimal and Real’s (2003) Risk Perception Attitude framework by proposing an Extended Risk Perception Attitude framework. This research also exemplifies Gupta’s (2000) categories of social construction of gender and sexuality in the HIV/AIDS discourse, and adds new evidence that proves their validity. In addition, this research enriches the literature in health-related information behavior by switching the research focus to other information behaviors than information seeking. Practically, this research provides recommendations to website designers on how to design HIV/AIDS prevention information for women that is more accessible, user-friendly, reliable, empowering and relevant.
Chapter 1
INTRODUCTION
HIV/AIDS EPIDEMIC AMONG WOMEN
HIV (Human Immunodeficiency Virus) is a retrovirus that does damage to the human immune system. Failure of the human immune systems gives rise to a collection of symptoms and infections called AIDS (Acquired Immune Deficiency Syndrome) (Coffin et al., 1986; Marx, 1982).
Globally, according to the UNAIDS (2008) report, the number of people who die from
AIDS each year has decreased over the last ten years because of increased access to treatment. The percentage of adults who live with HIV/AIDS has also leveled off since 2000. However, these promising statistics mask the fact that, in 2007, as many as 2.7 million people were infected with this disease and 2 million died from it. The UNAIDS (2008) report also reveals that HIV/AIDS represents a growing and significant health threat to women. Women now account for half of all people living with HIV/AIDS worldwide. Although this proportion has remained stable over the last ten years, HIV infection rates among women are greater than 50% in certain regions such as sub-Saharan Africa.
In the U.S., HIV/AIDS has been around for almost 30 years since the first reported cases of AIDS in 1981(CDC, 2009). An estimated 1.7 million people have been infected with more than 580,000 deaths and 1.1 million living with HIV/AIDS (The Henry J. Kaiser Family Foundation, 2009). HIV/AIDS does not equally affect different populations. Although men still accounted for 73% of all HIV/AIDS cases diagnosed in 2003, there was a more marked increase from 1999 to 2003 in HIV/AIDS diagnoses among women (15%) than among men (1%) (CDC, 2004a). Among all adults and adolescents living with HIV/AIDS, the proportion of women grew from 14% in 1992 to 23% by the end of 2005 (CDC, 2007a, 1998). In 2004, HIV/AIDS was the 5th and 6th leading cause of death among all women aged 35-44 and 25-34 years of age respectively. Cancer and heart disease were the only diseases that caused more deaths among women (National Center for Injury Prevention and Control, 2004). Minority women, especially African American and Hispanic/Latina women are most disproportionately affected. Although African American and Hispanic/Latina women together represented only about 24% of all women in the U.S. (National Center for Health Statistics, 2005), they accounted for about 82% of all the new HIV/AIDS cases among women in 2005 (CDC, 2007a).
This research focuses on women. Researchers note that women are more vulnerable to HIV/AIDS because of biological differences between males and females during vaginal intercourse (Padian, Shiboski, & Jewell, 1991). The membrane of the vagina is more permeable
(Padian, Shiboski, S. Glass, & Vittinghoff, 1997) and HIV is more concentrated in semen (Segal, 1993). Researchers also note that behavioral and contextual factors contribute to women’s vulnerability to HIV infections as well. The behavioral factors include women’s limited awareness of the risks involved in their behaviors; their limited knowledge about HIV/AIDS transmission and prevention; the emotional, psychological, and communicational barriers to their practice of prevention behaviors; and their limited awareness of the benefits of prevention behaviors. The contextual factors include gender inequalities, biased health policies, low socioeconomic status, and minority culture (details can be found in Chapter 2 “Background: Women and HIV/AIDS”). These behavioral and contextual factors often entangle with the stigmatized nature of HIV/AIDS, demonstrating the difficulties inherent in the efforts to alleviate the negative impact of HIV/AIDS on women. However, although biological factors are largely fixed, we can reduce women’s vulnerability through HIV/AIDS prevention and mass health education that address these behavioral and contextual factors.
HIV/AIDS PREVENTION AND PUBLIC HEALTH EDUCATION
Health inequality refers to the different distribution of risk factors and the resulting variations in health status and health expectancy between social groups or subgroups in the general population (Lahelma, 2006; Murray, Gakidou, & Frenk, 1999). Although there are always a certain degree of health inequalities in every society (Oliver, 2003), it is not justifiable that the health inequality in HIV/AIDS for women should be ignored. Health inequalities do not just affect those who are disadvantaged, but everybody in the society. For example, when HIV/AIDS was first detected in the U.S., it was only affecting a limited number of populations, mainly White gay men. However, the infections soon spread to other populations that originally were not considered vulnerable. It was highly possible that HIV/AIDS could have spread even further and wider if no actions had been taken (R. Wallace & D. Wallace, 1997). Therefore, according to Lahelma (2006), reducing the health inequality in HIV/AIDS for women by improving their health status and outcome could prevent the “spill over” effect and bring benefits to the public. Eventually, there would be an overall improvement in slowing the spread of HIV/AIDS in the whole society. Addressing the health inequality in HIV/AIDS for women is necessary also because women, who are already disadvantaged in this epidemic, could be put at an even more disadvantaged status. Health determines a person’s overall wellbeing, particularly his or her capability to overcome the negative consequences of being disadvantaged (Braveman & Gruskin, 2003a, 2003b).
In this research, HIV/AIDS prevention addresses women who are, or who believe they are HIV negative. This research does not address women who are already infected with HIV/AIDS and trying not to contract opportunistic diseases (Kasl & Cobb, 1966) or transmit the virus to others. “In the absence of a preventive vaccine or cure” (Kalichman & Belcher, 1997, p. 279), HIV/AIDS prevention is the most promising means to curb the spread of this disease and reduce health inequalities. According to Centers for Disease Control and Prevention (CDC) (2007c), HIV/AIDS prevention is important also because treatments currently available are relatively effective in enabling HIV/AIDS patients to live a longer life. Consequently, there are going to be more people who are living with HIV/AIDS and thus have the potential to transmit it to others.
Information plays an important role in HIV/AIDS prevention. At the individual level, HIV/AIDS prevention information could help people become aware of their risks for this disease and transition from risk perceptions to actions that lead to desired behavioral change (J. D. Johnson, 1997; J. D. Johnson, Andrews, & Allard, 2001). At the societal level, HIV/AIDS prevention information could help eliminate the public’s anxieties and stigmatizations that result from ignorance or misinformation about HIV/AIDS, and help transform public biases against this disease (Kalichman & Belcher, 1997).
Public health education as a tool for conveying useful health information plays a key role in HIV/AIDS prevention and alleviation of health inequalities. In a narrow sense, health education refers to activities that provide individuals with health information, knowledge, and skills to help increase their awareness, enable change in their health behaviors and lifestyles, and thus improve or maintain their health (Mackintosh, 1996; Raikes, 1976; Somers, 1976; A. Watts & Breindel, 1981). In a broad sense, health education refers to “a comprehensive systematic program of instruction” aiming at helping people make sound decisions and take effective actions related to their health (Raikes, 1976, p. 79). Public health education is a form of health education that is practiced via public health communication in the mass media. Public health education is carried out by health educators and communicators who use existing channels and
communication systems for information delivery and diffusion (McBride & Rimer, 1999; P. D. Mullen et al., 1994; Science Panel on Interactive Communication and Health, 1999). These channels include television, magazines, radio, billboards, etc.
Public health education is empowering (Laverack, 2004). It aims at “creating opportunities and inspiration to enable those without power and/or influence to gain skills, knowledge and confidence to direct their own lives” (Rifkin & Pridmore, 2001, p. 519). Peter Piot (executive director of UNAIDS) once suggested that social vaccines such as “promoting continuation of mass education” were needed to alleviate the negative impacts of health inequalities (Airhihenbuwa, Makinwa, & Obregon, 2000, p. 109). In fact, public health education on HIV/AIDS prevention has already become a priority given that that HIV/AIDS prevention information has still not reached every person, especially those disadvantaged in the society (Aruffo, Coverdale, & Vallbona, 1991; Kalichman & Belcher, 1997; Sweat & Levin, 1995; S.
Thomas, Gilliam, & Iwrey, 1989).
Although public health education is necessary, this venue alone is not enough to effectively motivate desired behavioral change in people who are at risk for HIV/AIDS. Public health education should be integrated with other more intensive and focused forms of health education, such as school- and community- based programs, clinic-based counseling services, and outreach programs for people who are hard to be reached (Backer, E. Rogers, & Sopory, 1992; Kalichman & Belcher, 1997; Simons-Morton, Donohew, & Crump, 1997). Only multidimensional health education targeting the vulnerable populations could lead to the most optimum intervention results (Maibach & Parrott, 1995).
HIV/AIDS PREVENTION EDUCATION ON THE WEB
As one of the most important components of the Internet, the Web (or WWW, World
Wide Web) is a promising and important communication medium for public health education on HIV/AIDS prevention. The Web is composed of hypertext documents that are linked to each other and distributed over the Internet (Kari, 2004). The core element of the Web is the website, a site or a location that is consisted of a homepage and links leading to other pages (Salinas, 2006).
In the U.S., because of its popularity with the public as a source of health information, the Web is increasingly adopted by healthcare providers and public health agencies and services for public health education (M. Berger, Wagner, & L. Baker, 2005; DeGuzman & Ross, 1999). The number of health websites increased from 15,000 to 100,000 from 1999 to 2003 (Cates, 2003; Rice, 2001). They were among the fastest growing categories of websites (Davis, 2002). The number of people online in general and the number of those interested in health information rise rapidly. These numbers are expected to continue to grow (Cotten, 2001). In 2009, 74.1 % of the U.S. population, i.e. more than 227 million individuals, had access to the Web, a 138.8% increase since 2000 (Miniwatts Marketing Group, 2009). The total number of people online looking for health information was estimated to have increased from 7.5 million in 1996 to 41 million in 2000 (Cleary, 2000; T.E. Miller & Reents, 1998). By September 2006, eight in ten people online in the U.S., i.e. about 113 million individuals, had searched for health information (Fox, 2006). On a typical day, about 6 million Americans go online for medical advice. This number exceeds the number of Americans who physically visit health professionals (Fox & Rainie, 2002). In a national survey conducted by the Kaiser Family Foundation, it was found that 75% of young people searched for health information online, more than those who played games, downloaded music, or shopped online (ClickZ Stats staff, 2001).
The Web is particularly popular with the U.S. women as a source of information, especially health information. According to a series of reports from Pew Internet and American Life (http://www.pewinternet.org/reports.asp), women account for 52% of the online population and 54% of the health seekers online. Eighty-two percent of the women online, compared with 77% of the men online, have looked for health information (Fox, 2006). African American women are even more likely than men to go online — 60% of African American women are online, whereas 50% of African American men are online (Fallows, 2005a). Women account for 57% of the African American population online (Spooner, 2001). In addition, 59% of African American women online have looked for health information, whereas 45% of African American men have done so (Spooner & Rainie, 2000). Among the Asian Americans, about 60% of women go online — a higher percentage than that of women online in any other racial/ethnic group (Spooner, 2001).
The attraction of the Web lies in its incomparable capacity and potential in information conveyance and presentation (Cassell, C. Jackson, & Cheuvront, 1998; U.S. Department of Health and Human Services, 2000). The Web provides 365/24/7 immediate access to a large amount of information in various formats (Bernhardt, Lariscy, Parrott, Silk, & Felter, 2002; A.E. Evans, Edmundson-Drane, & Harris, 2000). The Web is cost-effective and pervasive, reaching a large population in nearly every place in the world at a relatively low cost (Cassell et al., 1998). It provides a relatively high level of anonymity as well (Mohammed & Thombre, 2005; Skinner, Biscope, & Poland, 2003). Therefore, it is not surprising that online health information is especially appealing to those who are interested in information about sensitive health topics (Fox & Rainie, 2002). A national survey showed a more rapid increase in Web use among people with stigmatized diseases than that among those with non-stigmatized diseases (M. Berger et al., 2005). HIV/AIDS is such a stigmatized disease. The Web could protect those who need
HIV/AIDS information but do not want to be judged and scrutinized from being exposed to uncomfortable and awkward feelings that usually occur in face-to-face interactions (Mohammed & Thombre, 2005). In fact, HIV/AIDS patients are among the people with chronic medical conditions who increasingly take the Web as a major source of health information (Kalichman, Weinhardt, Benotsch, & Cherry, 2002).
HIV/AIDS PREVENTION EDUCATION ON GOVERNMENT HEALTH WEBSITES
This research focuses on women’s use of government websites to obtain HIV/AIDS prevention information. Government websites are those websites with .gov as the URL (Uniform Resource Locators) domain name suffix (Mohammed & Thombre, 2005). Government health websites are especially important for HIV/AIDS prevention education on the Web for two reasons.
First, according to Renwick (2002), HIV/AIDS is one of the diseases that most deprive vulnerable populations such as women, and is fundamentally an issue of human rights. More important than the right to be provided with medical service is the right to be treated with social justice. In the U.S., eliminating health inequalities has been identified as one of the top priorities. The government has expressed its determination to control HIV/AIDS epidemic in Healthy People 2010 (U.S. Department of Health and Human Services, 2000, chap. 13). Such a mission, therefore, should be more reflected in government health websites than those owned by other
entities.
Second, government health websites are regarded as one of the most trusted sources of health information online (Dutta-Bergman, 2003b), thus are more frequently visited. Besides, according to Lupton (1994), mass health education is a top-down political process characterized by power relations. In this process, health information is transmitted from the authoritative centers to peripheral areas. Since government health websites are perceived to be more authoritative, credible and reliable, non-governmental health websites tend to “borrow” information content from them either directly by posting the information or indirectly by creating links leading to them. Accompanied with such copying activities is the reproduction of approaches and ideas implied in such information content. As a result, government health websites largely determine what health information is available on the Web and how the messages are conveyed.
RESEARCH GAPS, GOALS AND QUESTIONS
According to Rimal and Real’s (2003) Risk Perception Attitude framework, individuals’ preventive health behaviors are guided not only by their perceived risk or vulnerability to a disease, but also by their beliefs in their ability to overcome the challenge. Information seeking, which is often ignored in the theories and models in health education with the behavioral approach, is an important form of preventive health behaviors. Individuals with perceived risk and efficacy beliefs would not only take measures to lower their risk, but also look for information that could help them become more knowledgeable about the disease.
However, although government health websites are ideal venues for women to look for HIV/AIDS prevention information, two problems may still exist judging from the literature in website evaluation, cognitive dissonance and selective exposure, social construction of gender and sexuality in the HIV/AIDS discourse, and public health communication strategies (details can be found in Chapter 3 “Literature Review”). First, women may be unable to or feel it hard to find HIV/AIDS prevention information on government health websites because of the poor design in information accessibility. As a result, they may give up searching. Second, even if they succeed in finding the information, they may not like it because of (1) the poor information format or quality; (2) the dissonance between their existing cognitions and the patriarchal ideologies on gender and sexuality that are socially constructed in the information they find; (3) their perceived irrelevance of the information they find to women’s general situations or to their specific individual situations. As a result, they may choose not to accept or absorb the information they find into their knowledge base.
According to Case (2002), Sears and Freedman (1967), and Thayer (1987), these two problems may result in the same consequence: HIV/AIDS prevention information on government health websites — no matter how theoretically sound and potentially beneficial it is — may fail to reach out to women and have substantial educational effects on them. In other words, such information may be futile in modifying women’s existing state of knowledge about HIV/AIDS prevention. Such information may thus fail to lead women to think and make informed and desired changes to the behaviors that put them at risk for this life-threatening disease (Case, 2002;
Sears & Freedman, 1967; Thayer, 1987).
In the research on health-related information behavior, even research on women’s
HIV/AIDS-related information behavior (Bar-Ilan, Shalom, Shoham, Baruchson-Arbib, & Getz,
2006; P. Crawford & Hudson, 2003; Feick, Herrmann, & Warland, 1986; J. D. Johnson &
Meischke, 1991; Krauss, Wolitski, Tross, Corby, & Fishbein, 1999; Nicholson, Grason, & Powe, 2003), the focus has been primarily on information seeking alone. There have rarely been studies that specifically explore women’s finding of the HIV/AIDS prevention information and their reactions to the information they find.
Therefore, this research examines women’s information behavior on government health websites in the context of HIV/AIDS prevention. It has both theoretical and practical goals.
Theoretically, through unpacking women’s feelings and experience in finding and reacting to the HIV/AIDS prevention information on government health websites, this research aims at uncovering the intervening factors between information seeking and knowledge gain so as to fill the gap of Rimal and Real’s (2003) Risk Perception Attitude framework. Practically, this research aims at providing recommendations to website designers on how to improve their design of HIV/AIDS prevention information so as to help women find it more easily and let them like it better as well. As a result of this effort, women could gain more knowledge from the available HIV/AIDS prevention information on government health websites. Their disadvantageous status in the HIV/AIDS epidemic could eventually be alleviated.
The overarching research question that informs this research is:
What are the intervening factors between information seeking and knowledge gain when women look for HIV/AIDS prevention information on government health websites?
In order to answer this overarching research question, the following two lower-level research questions need to be addressed:
RQ1: What factors influence women’s finding of HIV/AIDS prevention information on government health websites?
RQ2: What factors influence women’s reactions to the HIV/AIDS prevention information they find on government health websites?
CHAPTER OUTLINE
In Chapter 2 “Background: Women and HIV/AIDS”, I explain in more details the background of this research, i.e. HIV/AIDS epidemic among women. I discuss the stigmatized nature of HIV/AIDS and the behavioral and contextual factors contributing to women’s vulnerability to HIV/AIDS.
In Chapter 3 “Literature Review”, I review the literature in public health education, website evaluation, cognitive dissonance and selective exposure, social construction of gender and sexuality in the HIV/AIDS discourse, public health communication strategies, and healthrelated information behavior. Discussion of the literature then informs the development of the theoretical framework and the research questions.
In Chapter 4 “Research Methodology”, I discuss (1) the user orientation that guides my approaches to data collection and analysis; (2) data collection, including methods, participants, procedures and activities; (3) data analysis that involves transcribing and coding; (4) measures I have taken to increase the research trustworthiness.
In Chapter 5 “Research Findings”, I present the research findings and answer the research questions.
In Chapter 6 “Discussion”, I discuss the theoretical and practical implications of the research findings.
In Chapter 7 “Conclusions”, I summarize the contributions of this research, and discuss its limitations as well as implications for future studies.
HOW MUCH KNOWLEDGE CAN THEY GAIN? WOMEN’S INFORMATION BEHAVIOR ON GOVERNMENT HEALTH WEBSITES IN THE CONTEXT OF HIV/AIDS PREVENTION