AKHU-ZAHEYA, LAILA M. PhD, RN; DICKERSON, SUZANNE S. DNS, RN
Jordan, officially the Hashemite Kingdom of Jordan, is an Arab country in the Middle East that gained its independence in 1946. The population of Jordan is about 5 723 000 (2007).1 The official language is Arabic, but English is used widely in commerce and government and among educated people. Arabic and English are obligatorily taught at schools, both public and private. French is the only other language that is taught in some private schools. Jordan is ranked 89th in the world at 91.1% according to literacy rate. Its educational system is of international standards, and its secondary education program is accepted in world-class universities.2
Healthcare in the coming century requires the management of public and private health concerns. There has been a rapid growth of information technology (eg, Internet, cellular phones, and PDA) in nearly all areas of society, affecting the general population and professionals. The healthcare context is no exception in this regard; information technology is changing the shape of patient care when patients seek health information online. In recent years, Jordan has experienced widespread use of technology, including the Internet. Many consumers (eg, patients, students, and laypersons) have access to the Internet, which can be attributed to the widespread growth of Internet cafes. The university street in Irbid, Jordan, was in the Guinness Book of World Records for having the highest number of Internet cafes (100) on one street, serving the public with competitive prices and high-quality services.
Seeking health information (by using either the Internet or other sources) is a strategy that many people use as a means of coping and reducing stress.3 Having a disease, especially if it is chronic, imposes a heavy burden on patients, families, and the whole society. It is not only the challenges that the patient and family face, especially if it is a new experience, that present additional challenges, but also the feeling of losing control and feelings of powerlessness. Moreover, patients' insufficient health information impedes their participation in treatment decisions.4 The increasing incidence of certain diseases, the lack of knowledge, and the limited time healthcare professionals have to spend with their patients are all factors that could provoke patients to seek health information independently of the formal caregiving setting.
The Internet has been proven to be a useful technology for patients and their caregivers in meeting specific needs related to health management (eg, for health information, communication, support groups, decision making, and obtaining second opinions).5 The Internet, used judiciously, could serve as a media resource for patient education and empowerment because educated patients may be better prepared to participate in healthcare decisions and therefore experience more self-control and satisfaction. However, little or nothing is known about whether Jordanian patients and caregivers are using the Internet for seeking health information or their purpose for using the Internet.
Nurses' long-term objectives should include developing patients' and caregivers' capabilities in the area of Internet use for seeking health information. The purpose of this study was to evaluate Jordanian patients' and caregivers' use of the Internet and factors affecting its use to meet their health information needs and to determine the purposes of using the Internet. An additional purpose was to determine the diagnosis that patients and families were dealing with most frequently.
A scan of the literature indicates that there are no studies directly examining Jordanian patients' and caregivers' Internet use. Because Jordanian culture is family centered, it was reasonable to include both the patients and the caregivers in the study. In the family culture, family members, rather than individual patients, assume the responsibilities for information and decision making.6 Meanwhile, caregivers are motivated to seek information because Jordanian culture values helping others, especially caring for family members. Consideration of the family is important among Jordanians because disease poses many challenges for them.
In 2003, the Pew Internet and American Life Project reported that 62% of Americans with Internet access had used the Web to get health or medical information, and about 6% of Internet users search for health or medical information on an average day. The Internet health information sought included specific disease or medical problems, such as depression, cancer, arthritis, high blood pressure, anxiety, heart disease, and sleep disorders; certain medical treatments or procedures; diet; exercise; health insurance; environmental health hazards; immunization; problems with drugs and alcohol; and how to quit smoking.7 With the increased evidence of Internet use, this resource may act as a vehicle for patients and caregivers to obtain online health information and support. Therefore, it is worthwhile and useful to understand the different aspects surrounding Internet usage, such as access and user characteristics.
Internet users tended to be more educated, earn more money, and be women. A pilot study by Diaz et al8 used a self-administered mail survey to find the percentage of patients enrolled in a primary care practice who used the Internet for health information. Of the Internet users, 58% were women and the mean age was 45.8 years. Moreover, higher proportions of patients using the Internet were college educated and had annual household income greater than $50,000. The results of the study regarding user education and income may be attributed to the convenient sample studied (private practice). In addition, the relatively high response from women could influence the finding that most Internet users were women. However, a study by Houston and Allison9 using a different sample supported the previous results regarding Internet user education and income. The demographic characteristics of the participants showed that 64% of the Internet users were women and their median age was 42 years. Internet use was related to higher income, higher education, and having Internet access. Although this study also showed a high percentage of female users, it may be related to the sample bias (more women, 331, than men, 189).
A cross-sectional study by Dickerson et al10 was conducted at three urban primary care clinics to understand patients' Internet use for health information to look at a diverse population in terms of race, age, ability to pay, and health status. The study looked at the relationship between patient characteristics and the proportion of patients who used the Internet for health information. The study showed that 53% of Internet users were better educated, employed, and younger and were more likely to use the Web for health information than nonusers were. Moreover, patients with a greater number of chronic illnesses tended to be less likely to search the Web for health information. Overall, patients found health information from the Internet useful. In conclusion, with respect to the sampling issues, the results of the previous studies were similar regarding Internet users generally having higher socioeconomic status.
Internet access is one of the factors often studied in Internet use.11 Having Internet access is thought to increase patients' ability to meet their needs.9 Furthermore, access is perceived as a factor causing inequality between poor and wealthy people in their ability to use the Internet, which then contributes to an inequality in their ability to participate in health management. A survey study by Mead et al11 identified the factors that predict patients' interest in Internet usage as a health resource. The study was conducted, in part, to provide Internet access to those who are most deprived of it; however, participation was less than anticipated. The researchers found that the factors that may affect patients' interest in using the Internet (in order of relative importance) were positive outcome expectancy (ie, the patients' belief that using the Internet will convey health benefits), previous use of health Web sites, and positive self-efficacy (ie, patients' confidence in their ability to use the technology). Additionally, patient's interest in Internet use was affected by higher education, a positive attitude toward getting health information from alternative sources, social isolation, and having school-aged children living at home. The researchers concluded that Internet access, demographics, and particularly motivational factors all influence patients' interest in the Internet as a health resource. Therefore, these factors must be taken into consideration when assessing the use of the Internet and not just access issues alone.11
In support of the study by Mead et al that access is not the only barrier for using the Internet, Rogers and Mead12 sought to study individuals not using the Internet. The researchers found that the main reason for not using the Internet was lack of perceived utility and pertinence of such information in managing health. Other reasons for disinterest in using the online health information were a lack of confidence with the technology and uncertainty about the information from the Internet or other sources outside health services. Additionally, patients showed a lack of awareness of alternative information sources, inability to use available sources, underestimation of the value of lay action in managing health problems, and failure to adopt a role in managing their health.12 The researchers concluded that providing access is not sufficient to encourage Internet use.
Internet Health Information
Another factor that received attention among the researchers was the quality of Web information, possibly driven by concerns about the proliferation of health information on the Internet. At a minimum, the Web's health information must be accurate, not misleading, easy to understand, up-to-date, and not harmful. Murero et al13 conducted a study regarding patients' use of the Internet before and after cardiac surgery. The purpose of the study was to ascertain whether cardiopathic patients used the Internet for health-related information and if they found the retrieved information understandable and useful. Other sources of medical information that the patients were looking at included physicians, magazines, and TV. Patients pointed out that Internet health information was helpful in most cases. However, all patients interviewed perceived that sites designed by their physician could improve the quality of online health information. This study pointed out that the quality of the health information could affect patients' use of the Internet. High-quality health information could result in a positive attitude toward Internet health information and lead to positive health behaviors. In the study conducted by Diaz et al,7 62% of participants rated the quality of the Internet health information as "excellent" or "very good" and 32% rated the quality as "good." Six percent of the respondents rated the quality as "fair," and none of the respondents rated the information as "poor."
The review of the literature mirrors different factors that affect patients' and caregivers' Internet use for health-information seeking that should be taken into consideration collectively, such as the characteristics of seekers (eg, age, education, and employment), income, availability of access, and the quality of Internet health information. However, there is still little evidence regarding Internet use for health-information seeking among different populations, specifically different cultures, and whether there are other factors that could affect Internet use among other populations. Also, few studies include both patients and caregivers and whether either group seeks more Internet health information. The current study will look at Internet use among Jordanian patients and caregivers who are a unique population with a different culture.
A variety of inpatient and outpatient healthcare settings in Jordan, both hospitals and clinics, private and public, where both patients and caregivers attended, were included.
A convenience sample (n = 78) of patients experiencing a variety of health problems and diseases, and caregivers, both men and women, who were willing and able were asked to participate.
This research study used an English survey for the pilot study. An institutional review board (State University of New York at Buffalo) approval was obtained prior to data collection. The research assistant, who was a clinical nurse specialist, collected the data in the different settings. Participants received a survey packet with a cover letter that explained the study. The research assistant helped the patients and caregivers in completing the survey and answering any questions related to the English translation.
The survey questionnaire was modified from a study by Dickerson et al10 that included questions on patient Internet use for health information at three urban primary clinics. The current study survey was modified to include, in addition to demographic data (age, sex, diagnosis, and educational level), the availability of computer and Internet access, frequency of using the Internet, and the purposes for using the Internet. Moreover, the survey included questions related to the source of health information (friends or family, public library, TV, magazines, medical journals, physicians, and Internet), the quality of Internet health information, and the kinds of information participants wish to see (information needs).
The data were analyzed using the SPSS version 12 (SPSS, Chicago, IL). Descriptive and χ2 statistics were used to analyze the data. Of 100 surveys distributed, 78 were surveys returned; 37 (47.4%) were patients-with different health problems and diseases-and 41 (52.6%) were caregivers. Thirty (38.5%) of the participants were men, whereas 48 (61.5%) were women. Additionally, 38 participants (48.7%) indicated the availability of Internet at home, whereas 40 participants (51.3%) indicated the unavailability of the Internet.
Internet Use and Access
Among the study participants, 56.4% (n = 44) were Internet users, whereas 43.6% (n = 34) were nonusers. The demographic characteristics of Internet users and nonusers are summarized in Table 1. Although caregivers' uses (n = 24, 54.5%) were higher than those of patients (n = 20, 45.5%), there was no significant difference between the participants in terms of being caregivers or patients and Internet use (Pearson χ21 = 0.16, n = 78; P = .69). In addition, the results showed that women used the Internet (n = 26, 59.1%) more than men did (n = 18, 40.9%); however, there was no significant difference in terms of sex and Internet use (Pearson χ21 = 0.255, n = 78; P = .613). Most of the participants were patients with cancer and their caregivers (n = 31; 14 were Internet users); however, the patient's diagnosis was not significant in terms of using the Internet (Pearson χ211 = 8.26, n = 78; P = .69). Of the Internet users, 39.7% had a computer at home, whereas 14.1% obtained access to the Internet at their place of work.
Factors Affecting Internet Use
Age was a factor that seems to be related to the participant being a user or nonuser. Age differences and Internet use were found to be significantly associated (Pearson χ24 = 9.62, n = 78; P < .05; Cramér V = 0.351). The proportion of users who were in the age ranges of 15 to 35, 36 to 50, 51 to 65, and 66 to 80 years was 0.70, 0.38, 0.67, and 0.3, respectively. Follow-up pairwise comparisons were conducted to evaluate the differences among the proportions. The pairwise differences that were significant were between the age of 18 to 35 years and both 36 to 50 and 66 to 80 years. The probability of using the Internet was about 1.8 and 2.3 times more likely when the participants were at the age range of 18 to 35 years as opposed to the age of 36 to 50 and 66 to 80 years, respectively. Thus, younger participants were more likely to use the Internet. The summary of the pairwise comparisons among the participants' age ranges is displayed in Table 2.
Education was another factor that affected Internet use among the participants. Education and Internet use were found to be significantly related (Pearson χ23 = 21.69, n = 78; P < .05; Cramér V = 0.527). The proportion of users who were at high school level or less (according to the education system in Jordan, high school means secondary level, or grade 12), undergraduate (UGR), graduate (GR), and "other" was 0.55, 0.9, 1, and 0.23, respectively. Participants who responded as "other" did not specify the level of education. Follow-up pairwise comparisons were conducted to evaluate the differences among the proportions; the comparisons are summarized in Table 3. The pairwise differences that were significant were between participants at high school level or less and both participants at the GR and UGR levels; participants at the UGR level and participants revealed as "other"; and participants at the GR level and participants who responded as "other." The probability of using the Internet was about 1.6 and 1.8 times more likely when the participants were at the UGR and GR levels, respectively, as opposed to the high school level or less. Furthermore, it was 3.9 and 4.4 times more likely when the participants were at UGR and GR levels, respectively, as opposed to participants at the "other" level. Although it was not indicated explicitly, it was implied that those who mentioned their education level to be "other" were less educated than the other participants. Thus, the probability of using the Internet was more likely when the participant had a higher education level. Most of the users were employed (n = 29), which also showed a significant difference between Internet users and nonusers (Pearson χ21 = 23.7, n = 78; P < .05).
Among the Internet users, 16.7% indicated that they spend, on average, 1 to 3 hours per week on the Internet and 45.5% rated the quality of the Internet health information as "excellent," whereas 34.1% rated it as "good"; 4.5%, as "poor"; 4.5%, as "outstanding"; and 11.4%, "don't know." Users added that the Internet was a good source and made it easy for newly diagnosed patients to find information about their problems.
Internet users revealed that the purpose of using the Internet was for e-mailing (6.8%), chatting (4.6%), looking for information about medication (2.3%), and looking for information about alternative treatments (2.3%), and 84% used the Internet for more than one purpose. Although they were Internet users, the Internet accounted for only 4.6% of the source of health information and the media accounted for the highest percentage (36.4%) to obtain health information, whereas physicians accounted for 11.3% among other sources.
Regarding nonusers (43.6%), the percentage of patients and caregivers was identical (21.8%). Only 10.3% of the nonusers had a computer at home, and none of them had access to the Internet. In response to the question related to the likelihood of using the Internet when a computer and Internet access are available, 17.9% indicated somewhat likely to use. Media is the source of health information (26.5%) for most of the nonusers, followed by physicians (17.6%).
Other Sources of Health Information
Interestingly, participants' responses to the questions related to the source of health information indicated a wide range of views and sources used. Overall, 37.2% did not consult any source of health information, 32% obtained health information from the media (TV and radio), 14.1% sought health information from healthcare providers, 11.5% sought health information from the public library, 2.6% sought from the Internet, and 2.6% sought health information from personal acquaintances (friends or family).
Another interesting finding was related to the Internet users. Among the Internet users, 27.2% were not seeking health information from any resources. Moreover, the media (TV and radio) was used more than any other sources to obtain health information among all participants.
Content analysis for an open-ended question related to information needs ("What kind of information would you like to see?") reflected the perceived information needs of the participants. Based on multiple responses, they indicated the need for more information about an alternative treatment (35.0%), health education (20.0%), health information about their problems (25.0%), and information about new treatments (25.0%). Some participants (20.0%) recommended having an Arabic Web site to discuss domestic diseases in detail.
The present pilot study was designed to evaluate Internet use among Jordanian patients with various diagnoses and their caregivers. Specifically, the purpose was to discover the potential of the Internet to meet the needs of patients and caregivers as a media resource for education.
The results of the study are consistent with those of other studies with predominantly American samples. Jordanian Internet users reflected younger age, higher education status, and being employed, which are similar findings to those of the studies by Diaz et al8 and Dickerson et al.10 Additionally, most of the users rated the quality of the Internet health information as "excellent," which is congruent with the study by Diaz et al.8 In the current study, the descriptive result showed that a high percentage of users were women (59.1%), although that could be related to sample bias (48 women vs 30 men).
In contrast to other studies such as Pew,7 which showed that 62% used the Web to seek health information, the participants in the current study showed a lower percentage of using the Internet as a source of health information and reported mainly that they obtained health information from the media (passive seeking) and that they depend primarily on the physician to seek health information (active seeking), which could be related to cultural factors.
All nonusers (43.6%) indicated unavailability of the Internet, which is consistent with the finding that Internet use was found to be related to access.9 Although a percentage of nonusers (17.9%) indicated a likeliness to use the Internet if access was available, the study data did not allow clear explanation of other causes of nonuse or whether the unavailability of access is the major cause. Other studies10,12 indicated other causes for nonuse, including competency in searching, experience with technology, self-efficacy, quality and uncertainty about information, and attitudes toward using the Internet for seeking health information. In the current study, an additional factor for nonuse could be language-related because many Web sites are in English. Although there are Arabic Web sites, people may not be aware of them.
Most importantly, 37.2% of all participants did not seek any resources for health information. This response indicates lack of patients' and caregivers' information-seeking behavior. Seeking behavior can vary from one individual to another, affected by different factors. Previous studies focused on factors such as sociodemographic characteristics, including age, sex, education, employment, and previous Internet and computer experience. However, there is another factor that received less attention in previous studies, which is the individual's culture.
Culture is defined as "the learned, shared, and transmitted values, beliefs, norms, and life ways of a particular group that guide their thinking, decisions, and actions in a patterned way."14(p9) Culture can influence the individual's perception of health and therefore information-seeking behavior. The social network's beliefs and attitudes within the culture can affect the individual's information-seeking behavior. For example, in Jordan, patients typically depend on their healthcare provider to meet their needs. What's more, informing patients about their diagnosis is still a dilemma in Jordan. Therefore, it is not the general policy among healthcare providers to tell their patients about their cancer diagnosis. This is due to social stigmatization and lack of knowledge among the public as well as the health team.15
Religion, a critical factor related to culture, can influence information-seeking behavior. In Jordan, a predominantly Muslim culture, having an illness, whether acute or chronic, is considered hardship testing from God for the believer, and God rewards the individual for enduring such suffering. Besides, God created both the illness and the treatment; in Surah Ash-Shu'ara, verse , "And when I am ill, it is He who cures me." Additionally, the individual soul and body has the right to take care of itself. Part of believing in God is to protect this body by seeking health and treatment. It is like a faith that God provided, and we should protect it. However, there is still a minority who believe that having a disease is a punishment from God. This is important because it may have a negative impact on individuals' attitude toward seeking information and treatment; they will not see it as valuable. These beliefs may have an important impact on patients' and caregivers' perception and belief toward seeking information either from the Internet or other sources.
In summary, the findings reveal that there is a lack of understanding of Jordanian patients' and caregivers' health information-seeking behavior, whether they are Internet users or nonusers. In addition to the factors that were discussed in previous studies in relation to seeking health information, there are other factors, including cultural factors and health beliefs, that may have an impact on seeking health information from any sources that should be taken into consideration.
The interpretation of the findings from this study should take into consideration its limitations. This was a pilot study using convenience sampling, which is a nonprobability type of sampling that limits the generalizability of the findings. However, it is more practical and is more appropriate for an initial descriptive study. Also, this type of sample provides a means to acquire information in an unexplored area.16 However, the inability to detect the significance of some variables found on previous studies to be significant (eg, sex) could be related to the small sample size or to the representativeness of the sample.
The results were significant in adding more knowledge of patients' information-seeking behavior, specifically to Jordanian nurses and generally to all nurses, because it was conducted in a different culture. Although the study was conducted to assess Internet use, the results of the survey provide insights into the need to step back and study the health information-seeking behavior in general before studying the technology specifically used to seek health information. The survey revealed many nonusers, but it also showed that there are many who were not seeking health information either from the Internet or other sources. Therefore, it would be worthwhile to study the information-seeking behavior (when, why and why not, how, where, and what) among Jordanian patients and caregivers, given that there are no current studies examining this population.
Given the previous discussion, the study showed that there is a lack of understanding of Jordanian patients' and caregivers' information-seeking behavior, adding that 31 (39.7%) of the respondents dealt with one of the most challenging, devastating diseases, that is, cancer. In the current study, 14 patients with cancer or their caregivers were Internet users seeking health information to meet their needs. Cancer is considered the second leading cause of death in Jordan.17 Cancer patients engage in information seeking to meet their needs as a coping behavior. Further studies of health information-seeking patterns (eg, needs, beliefs, attitudes, culture, barriers, preferences, behavior, channels, and outcomes) among patients with different cancer diagnoses are essential to emphasize predictors that could explain and provide understanding of the behavior (cultural, personal, and situational).
A nurse's role encompasses different areas, including researcher, educator, counselor, and change agent. The goal of future nursing research should be to develop a clear understanding and to provide empirical evidence of patient and caregiver information-seeking behavior prior to developing any interventional program, taking into consideration factors (such as culture) that can influence patient and caregiver behavior. Future research questions should include the following: What are patients' and caregivers' health information needs? Do patients and caregivers willingly seek health information? What are the factors that motivate and prohibit them from seeking health information? Where do patients and caregivers obtain their information? What is the influence of culture and religion on information-seeking behavior? What is the outcome of the information-seeking behavior?
Nurses' long-term objective is to include patients and caregivers in disease self-management by improving their access to health information. Data about the individual's health information-seeking behavior will help in the development of a health educational plan and care.
In nursing practice, information is the area of support that patients and caregivers expect to receive from nurses and other healthcare providers. Nurses should be aware and sensitive to the individual's information-seeking pattern and cultural preferences. Nurses should be prepared to give information to seekers based on their needs, guide health-information seekers to high-quality resources, help individuals reaching positive outcomes from health information, and increase patient self-efficacy, coping, and control without harming the patient. For nonseekers, nurses should assess the factors that impede them from seeking and trying to change the individual's negative behavior for a more positive outcome.
The authors acknowledge the following: Dr Suzanne Dickerson, associate professor and director of graduate studies and doctoral programs, School of Nursing, University at Buffalo, the State University of New York; Dr Thomas Feeley, associate professor and director of graduate studies, Department of Communication, University at Buffalo, the State University of New York; Dr John Stone, clinical associate professor and director of the Center for International Rehabilitation Research Information and Exchange, University at Buffalo, the State University of New York; and Elizabeth Eiseshauer, BSN, RN, MLS, clinical informationist, Women and Children's Health Sciences Library, Kaleida Health, Buffalo, NY.
© 2009 Lippincott Williams & Wilkins, Inc.