Situating Internet Use: Information-Seeking Among Young Women with Breast Cancer
In recent years considerable attention has been focused on the potential of the Internet as a means of health information delivery that can meet varied health information needs and empower patients. In this article, we explore utilization of the Internet as a means of health information consumption amongst young women with breast cancer who were known Internet users. Focusing on a population known to be competent at using the Internet allowed us to eliminate the digital divide as a possible explanation for limited use of the Internet for health information-seeking. Ultimately, this allowed us to demonstrate that even in this Internet savvy population, the Internet is not necessarily an unproblematic means of disseminating health care information, and to demonstrate that the huge amount of health care information available does not automatically mean that information is useful to those who seek it, or even particularly easy to find. Results from our qualitative study suggest that young women with breast cancer sought information about their illness in order to make a health related decision, to learn what would come next, or to pursue social support. Our respondents reported that the Internet was one source of many that they consulted when seeking information about their illness, and it was not the most trusted or most utilized source of information this population sought.
Introduction: The Promise of Online Health Information
In recent years the Internet has received considerable attention as a means for dissemination of health information. Internet based delivery of health information is often viewed as an optimal way to disseminate health information because it offers privacy, immediacy, a wide variety of information, and a variety of perspectives (Bischoff and Kelley, 1999). An expansion of health information websites has been supported by health policy documents in many countries, which suggest that greater availability of health information via the Internet will lead to the emergence of more informed patients who are better able to assess the risks and benefits of different treatments for themselves.
For example, a Health Canada planning document identified the provision of “relevant, credible and timely health information to the public to empower individuals to manage their own health through a Canadian Health Network and self-care and telecare services” (Health Canada, 2000: 79) as one of three priorities. Services such as the National Health Services' NHS Direct Online have been developed in order to “help people to take more responsibility for their own health and to communicate with healthcare professionals” (Department of Health, 2004). Similarly a European Union policy document argues that “as Member States try to contain healthcare costs and the paternalist model of ‘doctor-knows-best' is eroded, patients want to learn about their condition, its treatments, and preventative measures” and calls for promotion of “the educational power of the Internet to inform patients and their carers.” Reflecting an “underlying philosophy of e-health … to empower the individual to look after his/her own health most effectively” (United Kingdom Parliament, 2000),1 similar assertions have been made in Australia (Gaby & Henman, 2004), NewZealand (where a briefing for an incoming Minister of Health suggested that “meaningful data and information can be used to empower Maori communities”) (Ministry of Health, 2002), and numerous other countries as well. Clearly, consumer health information is seen as central to patient empowerment and consumer/ patient involvement in health decision making (Henwood, Wyatt & Hart, 2001).
Articles about the potential of the Internet to offer help and hope to people suffering a range of health conditions—or to those who simply aim to keep healthy—are proliferating rapidly (Bauer, 2001; Cline & Haynes, 2001; Eysenbach & Kohler, 2002; Ferguson & Frydman, 2004; Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2002a; Fogel, Albert, Schnabel, Ditkoff, & Neugut, 2002b; Jones & Pinnock, 2002; Lieberman, Golant, Giese-Davis, Winzlenberg, Benjamin, & Humphreys, 2003). Much has been written about lay people's use of the Internet for health-related information (Eysenbach & Kohler, 2002; Hardey, 1999; Hardey, 2001; Jadad & Gagliardi, 1998). It is generally felt that the Internet—part of an increasingly ‘wired’ world (Eysenbach, 2003)—is an important source of information and support for people with health concerns (Rice & Katz, 2001).
In recent years, as interest in the use of the Internet as a means of delivery of online health information has grown, authors have increasingly considered a range of issues related to online health information seeking. For example, several authors have noted that online health information seekers tend to be better educated and wealthier than those who do not seek online health information (Cotton and Gupta, 2004; Eysenbach, 2003; Fogel et.al, 2002a;), and several authors have also noted that use of the Internet for online health information seeking is greater among Caucasians than among ethnic minorities (Fogel, Morgan and Davis, 2005; Fogel et.al., 2002a; Talosig-Garcia and Davis, 2005). Differences in rates of Internet use for health information consumption have also been noted amongst urban and rural populations (Gustafson, McTavish, Stengle, Ballard, Hawkins, Shaw, Jones, Julèsberg, McDowell, Chen, Volrathongchai, and Landucci, 2005) and in relation to age (Cotton and Gupta, 2004; Eysenbach, 2003). Lastly, not being employed full-time, engaging in other Internet activities and being female have been identified as consistent influences of higher Internet health information searching (Rice, 2006).
Although there has been growth in recent years in scholarly inquiry concerned with varied aspects of online health information seeking, several issues related to the Internet as a means of online health information seeking have received only limited attention, and warrant further investigation. For example, many studies about online health information seeking discuss the activity out of context, ignoring other means by which people may also look for information. Studies that do address Internet health information-seeking in the context of other information sources are often quantitative (e.g., Cotton & Gupta, 2004; Satterlund, McCaul & Sandgren, 2003), and therefore miss opportunities to explore important questions about the various meanings of ‘information,’ or to investigate the subtleties of the information-seeking process itself. Seldom has the information-seeking journey been explored as a trajectory from the point at which people desire information, to the ways and means by which they search for information, with some exceptions (e.g., Anigbogu & Rice, 2001; Rozmovitz & Zeibland, 2004). Consequently, little is known about how the Internet may factor into the health information-seeking journey overall, about how satisfied people are with their Internet health information searches and the information they find online, and about what people do with the information located through online searches. We sought to address these issues in our research.
Our study explores the Internet health information-seeking journey undertaken by a specific group of patients: young women with breast cancer, defined for our purposes here as women who were diagnosed with breast cancer at age 45 or younger.2 This population interested us for two reasons. First, despite the unique information needs of this population (Dunn & Steginga, 2000; Ontario Breast Cancer Community Research Initiative, 2003; Partridge, Gelber, Peppercorn, Sampson, Knudsen, & Laufer, 2004) and the lack of information available that is relevant to those needs, there has been little research conducted with this group. Second, we wanted to explore the realities of Internet use for health information-seeking in a population that is assumed to be among the most frequent and knowledgeable Internet users (Mills & Davidson, 2002; Skinner, Biscope, & Poland, 2003).
As well as gaining a better understanding of the information needs of young women with breast cancer, we hoped to gain insights about how Internet based health information consumption fits into broader patterns of health information consumption. Our research questions were formulated in an effort to help us both situate the Internet within the broader constellation of health information sources used by health information seekers, and gain insights about health information needs of young women with breast cancer, which might be of use in the planning of both off-line and online health information provision in the future.
Internet Use to Seek Information about Cancer
Several studies have looked at use of the Internet for health information within the general population of people with cancer. Balmer (2005) highlights the importance of the Internet as a source of information for this group, and calls for more recognition of this phenomenon by health professionals. Ziebland, Chapple, Dumelow, Evans, Prinjha & Rozmovits (2004) found that cancer patients used the Internet for a wide range of information and support needs, many of which are unlikely to be met through what the authors referred to as conventional health care.
Most studies about cancer and Internet health information focus on specific types of cancer, recognizing that for the most part, different types of cancer affect demographically different populations, potentially resulting in different information preferences, needs and health information-seeking styles. Several studies about breast cancer and online information have been undertaken. Pereira, Koski, Hanson, Bruera and Mackey (2000) found that the majority of patients who use the Internet found the information online to be useful (88%). Fogel, Albert, Schnabel, Ditkoff & Neugut (2002b) found that use of the Internet for information about breast health issues was associated with greater social support and less loneliness in women with breast cancer. In Raupach and Hiller's (2002) study of women who had received primary treatment for breast cancer, although the women reported high levels of satisfaction with brochures and the Internet, they rated information received personally, through a physician, a nurse or support group members even higher. Satterlund, McCaul and Sandgren (2003) suggest the Internet plays an important role for breast cancer survivors after medical treatment has ended.
We found only a few qualitative studies in which women with breast cancer and their Internet use were the subject of study. For example, Wolf (2004) conducted two focus groups (four women each) to explore the information needs of women who have undergone breast reconstruction and found that although the Internet was a valuable source of information for those women, other information sources such as written information, contact with other patients, and the surgeon were also important for this population. In Wolf's study, the women had contact with a breast health nurse who played an important role in facilitating information access, regardless of its source. Despite suggestions by the authors of several studies that breast cancer patients who use the Internet to search for health information are younger, more educated, and more affluent than those who do not use the Internet (Engelman, Perpich, Peterson, Hall & Ellerback, 2005; Mills & Davidson, 2002; Periera, Koski, Hanson, Bruera & Mackey, 2000), we found only three studies that looked at the population we have defined as young women with breast cancer and their information needs and information-seeking—on the Internet or elsewhere. Two studies were concerned with information about fertility (Partridge, Gelber, Peppercorn, Sampson, Knudsen & Laufer, 2004; Thewes, Meiser, Rickard, & Friedlander, 2003). A third study (Grosser, 2003) discussed the specific needs of younger women, but appears to be anecdotally based and was largely dedicated to informational needs associated with future fertility issues, as well as responsibilities related to younger women's life stages (e.g., childcare, etc.). Dunn and Steginga's (2000) work, although not specifically about information needs or information-seeking, describes key concerns of young women with breast cancer—including depression, fear and anger—and highlights interventions suggested by participants, including peer support for addressing the key concerns identified by participants. Williamson (2005) used ethnographic methods to explore the informational needs of women with breast cancer, within the context of designing a web based information portal to better meet their needs. Although young women with breast cancer were not the focal point of Williamson's research, she found that young women had specific and unmet information needs.
The context: young women with breast cancer
Although breast cancer primarily affects women over 50, 20 percent are younger than that (Canadian Cancer Society, 2008). Although the prevalence of breast cancer among young women is significant, there has been very little research conducted about young women's experiences of having breast cancer. This is especially troubling given that young women's experiences of cancer are different from post-menopausal women's experiences in a number of ways. First, the diagnosis and treatment of breast cancer in younger and older women often differs. Second, young women often exhibit more aggressive manifestations of breast cancer, and are diagnosed at a later stage of the disease (Breaden, Rudge & Maddocks, 2002). Finally, they are also coping with different life challenges from their older counterparts, as they often have concerns about careers, finances, and/or taking care of a young family (Wang, Cosby, Harris & Liu, 1999). Fertility can also be a major concern (Partridge, Gelber, Peppercorn, Sampson, Knudsen & Laufer, 2004; Thewes, Meiser, Rickard & Friedlander, 2003). Unmet needs, unhappiness and financial distress are said to be greater in younger women than older women (Dunn & Steginga, 2000; Williamson, 2005). Young women report that information that speaks to their concerns is simply not available. Comments that “all the information that we have is geared to women over 50” (Ontario Breast Cancer Community Research Initiative, 2003) were frequently expressed in a recent forum about breast cancer and young women, and Williamson (2005) found that the informational needs of women under 45 differed significantly from those over 45. It is not lack of information that is a problem: young women have reported being “bombarded by pamphlets and booklets” (Ontario Breast Cancer Community Research Initiative, 2003) but still their informational needs do not seem to be met. It appears that the specific types of information they need are unavailable (Williamson, 2005).
Although some research had been conducted about online health information-seeking, the activity has rarely been studied as a trajectory from the point of needing information through the process of searching for it to the end point of using it. In addition, Internet health information-seeking has not been explored as one aspect of general health information-seeking. Finally, there has been little research conducted about the information needs and information-seeking behaviour of young women with breast cancer. To address these gaps in the literature, we conducted a qualitative study that explored the different types of information desired by young women with breast cancer, how this group of women who are experienced in using the Internet meet their information needs, the extent to which the health information young women with breast cancer find—and the means through which they find it—met their needs, and the degree to which the Internet is or is not central to the health information seeking strategies of Internet savvy young women with breast cancer.
Approach and Methodology
In order to gain insights about how health information available via the Internet fit within broader contexts of health information-seeking for young women with breast cancer, we adopted a qualitative, person-centered methodology consistent with Dervin's (1999) sense-making methodology. A cancer diagnosis signifies a lifetime of “making sense” in a fragmented and uneven information environment (Hesse, Arora, Beckjord & Rutten, 2008). We were interested in situating this study within the context of sense-making throughout critical junctures in the breast cancer journey: discovery of a lump, initial diagnosis, treatment decision-making, and completing treatment. Similar to Dervin's (1999) approach, we were interested in enlarging the concept of information beyond what Dervin referred to as ‘the usually institutionally-prescribed scientific facts' to a view of information situated within the context of human practices and acts of sense-making. Towards this end, we provided respondents with an opportunity to narratize their experiences in ways that were personally meaningful, rather than imposing pre-assigned response categories on their experiences. Our approach also allowed respondents to anchor their experiences to specific time points and events.
We designed the study to make extensive use of the Internet. Our sample was purposive: we sought women who had been diagnosed with breast cancer prior to age 45 at the time of diagnosis, who were also known to use the Internet for health information seeking. Although research is currently being undertaken that focuses on increasing Internet based health information use amongst marginalized groups (e.g., less affluent cancer patients—see for example Gustafson, McTavish, Stengle, Ballard, Hawkins, Shaw, 2005–or ethnic minorities—see Fogel, Albert, Schnabel, Ditkoff, and Neugut, 2003), we were interested in working with a population that is assumed to be among the most extensive users of the Internet for health information seeking: Internet savvy women who are likely to be highly educated, young, and financially stable people. Focusing on a population known to be competent at using the Internet allowed us to eliminate the digital divide as a possible explanation for limited use of the Internet for health information-seeking amongst women with breast cancer.
We recruited our study population through a group of activist women associated with an organization called The Young and the Breastless. This group has a website that attracts national attention, which we used for posting a study recruitment notice. We also posted notices on other breast cancer websites (BC Cancer Agency, Canadian Cancer Society, BC and Yukon Division) and in cancer clinics across British Columbia (Vancouver, Fraser Valley, Kelowna, Victoria), and received media coverage in local newspapers and television.3 Our recruitment notice requested that women contact us via e-mail if they were interested in “telling their story” about their experiences with health information-seeking, but also offered a phone number to call for further information. Participants learned about the study though web sites, e-mail notices that circulated amongst breast cancer survivors, and through print newsletters and newspapers. All but two participants made initial contact about the study through e-mail; the others initially contacted research staff via telephone. All study participants owned or had access to a computer, and after the initial contact interacted with researchers via the Internet.
After obtaining signed consent forms from participants (required by our research ethics review boards), we began the process of soliciting written narratives from participants about their information-seeking journeys. Participants were provided with predetermined sentence stems to encourage them to think about what they needed at certain points in their diagnosis and treatment trajectory. The use of sentence stems was derived from Loevinger's (1970, 1998) work, and, is a common projective technique used to elicit psychologically significant narratives from individuals, when the focus of enquiry is individual meaning-making. Examples of sentence stems we provided included “When I was first diagnosed with breast cancer, I felt…” and “The information I felt I needed at first was…” We did not include a sentence stem specifically about the Internet because we wanted to see what women wrote about the Internet unprompted, and how online health information-seeking seemed to fit into broader health information-seeking processes. Exploring the potential of the Internet from the outset, we believed, would “confirm the technocratic vision of the centrality and normativity of technology” (Wyatt, Thomas, & Terranova, 2002).
The supplied sentence stems were only a guideline and could be used in whatever fashion the participants wished to. Women were also told they could simply write their story—any length—and email it to us. Some women used most of the stems, a few completed them in short sentences, but most women used them only as a guide. This meant that the submissions we received varied considerably in tone and length. Some women wrote fascinating—even literary—accounts with a great deal of personal detail.
Although most of the study was conducted online (from participant emails of initial interest, to the sending of consent forms for information, to emails back and forth for clarification, to the submission of final narratives by participants), we mailed (by Canada Post) a package of information to participants and asked them to mail us back a completed demographic form and consent form. As participants contacted us we maintained a master list so that we could determine who needed a reminder, which participants had completed their narratives, and who was lost to follow-up. When participants indicated they were unable to follow through for whatever reason, we coded them as incomplete; however all contacts were maintained in a master database so that completion rates could be determined.
Response to recruitment
We received 78 expressions of interest and 35 women completed the narratives, for a completion rate of 45 percent. Respondents ranged in age from 28 to 45 with an average age of 39. Table 1 provides socio-demographic details about our participants.
Table 1. Participant socio-demographic characteristics
|Annual income|| || |
| < $40,000||3||9|
| Over $100,000||8||22|
|Relationship status|| || |
|Employment status|| || |
| Unemployed due to cancer||3||9|
| Unemployed for other reasons||2||6|
| Working full time||15||43|
| Working part time||7||20|
| Sick leave/disability||4||11|
|Education|| || |
Although the completion rate was good for this type of study (Cook, Heath, & Thompson, 2000; Zhang, 1999), we remain interested in learning more about why women did not complete the study (submit a narrative)—especially since many of the women who initially contacted us to express interest in the study did not respond after our initial contact indicated that they intended to. Reasons for non-response following our initial contact may have included illness, difficulty of writing the story, lack of time, lack of motivation (for instance it was up to the women to get in touch with us, rather than having an interviewer call them to book a time), and/or the different tasks involved in completing the submission (for instance, participants were required to fill in consent and demographic forms by hand and mail them back to us, even though their narratives were to be emailed back). In light of the increasing popularity of online research and the potential advantages of online research (e.g., the ability to reach geographically dispersed participants), further research that addresses issues of non-completion may be warranted.
Coding and analysis
Narrative information we collected from study participants was analyzed with the aid of NVivo, qualitative data analysis software. Narratives were coded as we received them, consistent with qualitative approaches that suggest coding categories should emerge from the data and coding should be undertaken iteratively (Marshall & Rossman, 1999; Morse & Richards, 2002). Following grounded theory (Corbin & Strauss, 1990; Strauss & Corbin, 1997) we chose not to begin with a hypothesis, opting instead to allow the data to speak for themselves through the voices of our participants. We developed core concepts using the constant comparative method, comparing each narrative to those that preceded it. Examples of the core concepts include frustration at lack of specific, tailored information; lack of connection to the world of older women who have breast cancer; affinity with young women who have breast cancer; information overload or saturation; conflicting information; distrust of clinical information; and fear as an inhibitor to taking in information.
Once we had a feel for the landscape of our participant's narratives, we were able to move into the more specific subject area of health information-seeking behaviour. Based on our initial concepts and taking into account the literature and context of the ACTION for Health project (a larger research project through which this research was undertaken which had as its focus the role of technology in health information production and consumption,4) we then coded our narratives using a more structured, deductive approach that allowed us to problematize a number of assumptions perpetuated in some scholarship, such as:
- •putting health information online will meet health information seekers' needs;
- •people's first choice for health information is the Internet;
- •people will experience few problems finding the information they need;
- •the information they find will be immediately useful—i.e., will not require interpretation.
Problematizing these assumptions provided a mechanism through which we were able to explore how the Internet fit into the overall health information-seeking strategies of our respondents, and allowed us to addres sour overall research questions. Our coding categories related to why young women with cancer look for information, what type of information they looked for, where they looked, whether or not they found information they located via the Internet useful, and what they did with the information they found. Our analysis of participants' narratives yielded insights about their motivation for seeking information, the types of information they sought (e.g., practical, medical, existential), the means through which they sought information (e.g., a book, online, a support group), how useful information from different sources was, and what participants did with the information they found. Each of these areas is addressed below.
What drives young women with breast cancer to seek information? Initially, it is the frightening discovery of a lump, or confirmed diagnosis of breast cancer itself, and the need to determine meaning and significance, anticipate what lies ahead, and reduce uncertainty. “I needed to know if I was going to die,” stated several participants, and: “I needed to know exactly what lay ahead of me.” Another strong motivator was the need to gather information in order to make a decision regarding treatment. One participant described the information challenge she faced that motivated her to seek information: “this was a terrible time for me. I agonized over the decision about which treatment to take and felt that I was being asked to make a decision (in two days) without having enough knowledge on which to base my decision.”
About half of participants also indicated that confirmation or verification of existing information motivated them to search for more information. For example, women said they checked out what had been told to them by their physicians to make sure it was the most accurate or up-to-date procedure or treatment available. One participant stated, “I also wanted to know whether the chemotherapy regime suggested to me was the best for someone my age.” Another told us: “I immediately wanted information that would help me understand what was going on and help me to assess the situation.”
Other drivers for information-seeking which were mentioned less frequently were the need for control, and the desire to be informed in order to be able to question doctors. “Knowledge is power became my motto right off the bat. It kept me sane at a very emotional time,” said one woman. However, some women specifically stated they did not seek out information, as they felt it would be too much for them to take. As one participant put it, until she was given a concrete diagnosis, “I was overwhelmed by the information. I was frightened and stopped searching.”
What is the type of information sought by young women with breast cancer? Several women said they initially wanted to know if they were going to die. The search for survival statistics proved fruitless, though, since such information cannot simply be applied to an individual case to determine prognosis. Most women desired a range of information about medical treatments—the options, the side effects, the relative effectiveness compared to other treatments, the recovery time and so on. Many also expressed psychosocial information needs, such as “how would I tell my mom, and how would I cope?” There was an equal desire for what many respondents called practical information—how much time they should take off work for certain procedures, how to talk to their children, parents or friends, where to get financial support, how to cope emotionally, and whether to tell employers. Some of the information respondents sought, they found; other information was nowhere to be found. Two strong themes regarding content were the need for information relating to young women who are dealing with careers, children and busy lives, and the need for information specific to them personally. One woman summed it up as “information that fit for me—my age group, my needs, my fears, and anxieties.”
All respondents indicated that they used a variety of means to seek and receive information. About one third of respondents went to the Internet first, one third went to print material first, and one third sought out a face-to-face interaction with a friend, doctor or other health professional, or another women who had lived through breast cancer. Online modalities were varied. Women described surfing the net, using a live chat site, or visiting websites which were quickly bookmarked for future reference. Some used online discussion groups or just emailed someone for more information or to set up a time to speak in person. In terms of print material by far the most useful resource mentioned was Dr. Susan Love's Breast Book, which one third of respondents (12 of the 35 women who completed narratives) mentioned. One woman described Love's book as “a bible of sorts for me to this day. It gave me more of the information which I needed.”
Videos were mentioned only twice. Access to peer reviewed clinical literature was also rarely mentioned. Often, information obtained through one source (such as a health professional or a friend) was verified through other means, and this was one reason that some women sought information online. In addition, finding one piece of information sometimes provided the motivation to locate other information in a different modality, in order to confirm the original information.
Although all of our participants had Internet access, not all of them used the Internet to seek information about breast cancer. A very few participants avoided the Internet on principle, finding it overwhelming. One participant told us the Internet created more questions than answers. Some women used the Internet only for specific tasks, such as checking out information they had heard elsewhere, or connecting with other women who have breast cancer. Almost all women said they read books, and for many, that is what they reached for first after they had been diagnosed. Most women said that other women who have had breast cancer would be the best means—sometimes the only means—for getting certain information, for instance what to expect on a day-to-day basis. Some women wanted to get this information from others face-to-face, while others preferred chat rooms or online discussion forums.
Utility of information
How useful did women find the information they sought and the means through which they sought it? Not surprisingly, the extent to which our participants found the information they located useful varied, no matter what format it came in and how it was delivered. The Internet as a source of medical and treatment information was rated highly by some and poorly by others. Comments about the usefulness of information women located from online sources ranged from “I found this site to be one of the absolute best,” to “couldn't find anything useful.” Women's views of the Internet—as well as information they found on it—varied from excellent to useful to overwhelming to frightening. Many women mentioned the desire to know what sites were legitimate. One tactic used by some women was to generate a list of sites they would visit over and over again. Being overwhelmed with information that was not relevant was a frequent theme identified in relation to Internet based information-seeking. Women who clearly were more experienced with the Internet and comfortable online had less difficulty with Internet based information, and talked about being careful about how they searched online. Being careful referred not only to where, but the extent to which, they searched. The Internet was also seen by some as a means by which women connected with other women to get information. It was usually rated well for this purpose, although contact made online did not always translate into a subsequent useful encounter.
Participants' opinions of books and print materials were less variable than their views of Internet based health information. Overall, participants clearly seemed more comfortable with reading print materials than with surfing the Internet, although a concern with books and print material was whether it would be current, since new findings about breast cancer and treatments are frequently released, and books and pamphlets tend to be updated with lesser frequency than many web sites. All participants found face-to-face contact, and the information they received from that contact, the most useful and helpful of all. That is not to say they were always pleased with the contact or with the information, particularly if it came from insensitive physicians or specialists. Sometimes it was difficult to receive the messages, particularly the initial information. One woman told us “All I heard was ‘Blah, blah, blah, CANCER, blah, blah.”’ A small number of women found the information discussed in face to face support groups unhelpful if it dealt with issues that did not concern them (e.g., four participants said support groups tend to be for older women who have grown children. Another participant told us: “When I eventually ventured out to the local breast cancer support group, I found the other women congenial, but not much support.” This was attributed to the age difference. As one participant put it, “I feel like it was like being a teenager and given advice on being an adult. I just wasn't ready for that.” Overall, however, face-to-face or talking with other women rated highly as far as utility was concerned.
Our final analytic category, outcome—meaning what people did with the information—overlapped with the “motivation” coding at times. In other words, women sought information because their motivation was to make a decision, and making a decision was the outcome. Similarly, if being prepared was a motivating factor in seeking information, a successful outcome of seeking that information was being prepared. One woman stated that “as a result, I could have a meaningful discussion with my oncologist” following her research on chemotherapy. Another reflected a similar sentiment: “It allowed me to engage in informed discussions with the surgeon.” A third stated that “I went to the appointment feeling somewhat prepared.”
We found most women used information they sought to help them with decision making processes. Over and over again we heard the words “I decided…” in our narratives. For example: “I then decided that it was time to have the genetic testing done,” or “I then decided to have preventative surgeries.” Other outcomes related to information women sought included discussing information with their physician, becoming hopeful and strong, or being totally confused. A strong theme in this area was the outcome of helping others. Women discussed their experiences, including their information-seeking, as a kind of journey from which they had learned a lot, and which they felt compelled to share with other women. One participant told us that following treatment “I could contribute, advising those women who were also coping with the ravages of CEF [a chemotherapy regimen].”
Discussion and Implications
Many findings from our analysis are consistent with those reported previously. The women used Internet information to prepare themselves for treatment decisions and discussions with physicians (Rice & Katz, 2006) as well as to reduce uncertainty (Brashers, Goldsmith & Hsieh, 2002; Zanchetta & Moura, 2006). They had concerns with the legitimacy of information (Hesse, Arora, Beckjord & Rutten, 2008); and compared Internet delivered information favorably to face to face interactions when health care providers or friends and peers who were insensitive (Anigbogu & Rice, 2001). They also valued opportunities for practical and experiential knowledge gained through peer contact in online support groups, as has been described (e.g., Barnett & Hwang, 2006). Lastly, as identified in other cancer populations, information needs were complex and changed over time (Rosmovitz & Ziebland, 2003).
Our analysis also revealed that the Internet is only one among many sources of information for young women with breast cancer. This finding is consistent with other research which has investigated the constellation of informational resources health information seekers consult. For example, Cotton and Gupta (2004) found that both off-line and online health information seekers consulted multiple sources of information (e.g., books, magazines and physicians as well as friends, and, for online information seekers, the Internet), and Rozmovits and Ziebland (2003) found that breast cancer and prostate cancer online information seekers often compared information from several sources before believing it. Similarly, our findings suggested that nearly half of our respondents sought information in order to clarify information gained from another source.
Our research design did not allow us to determine to what extent, if any, views about the usefulness of the information found online related to information seekers' health literacy or online searching skills; however this may be an area worthy of further investigation. Benigeri and Pluye (2003, p. 383) have noted that “there are very few tools to help people find relevant information in this mountain.” It is increasingly recognized that health information seekers who go online to answer their questions may face general and/ or health literacy issues, which for many makes it difficult to find the information they are seeking online (Davis, Williams, Marin, Parker & Glass, 2002).
Our findings also suggest that although women are experienced in using the Internet, and may initially go online to look for health information, they are unlikely to stop there. This is consistent with research conducted through ACTION for Health, which found that 44 percent of respondents seeking a librarian's assistance in locating health information had consulted the Internet prior to asking for help locating health information (ACTION for Health, 2005). One possible explanation is that Internet users were unable to find what they sought online, and subsequently sought the assistance of a human information intermediary to meet their needs. Through our study, the explanation is broadened: it is not necessarily that women do not find what they are looking for, but that they want comprehensive information and multiple opinions. Little is known about where the Internet fits into the broader constellation of health information resources and health information seeking trajectories (e.g., whether the Internet is the first source of information and health information seekers subsequently consult other information sources for clarification of information they found online, or whether other information sources leave people with questions that they then seek to answer online). Our study reveals that this gap in knowledge is understandable, as health information-seeking is a complex activity. However, gaining insights about how Internet based health information seeking relates to other health information resources as well as the health information seeking trajectory will be important in that it has implications for both for design of the content of online information, as well as policy implications for how support services are delivered to those seeking health information. If people are seeking out the support of librarians after conducting Internet searches, healthcare organizations may want to invest in hiring health librarians or patient navigators to assist with health information searches, or may want to invest in writing guides aimed at improving the search skills of patient populations, rather than maintaining websites. The need for human health information intermediaries who can enhance online health information seekers' experiences with online resources was identified in several contributions to Wathen, Wyatt and Harris' (2008) recent edited collection Mediating Health Information: The Go-Betweens in a Changing Socio-Technical Landscape.
Even though young women with breast cancer may use the Internet for other things, including, for some, to maintain contact with others living with similar diagnoses, the Internet is not necessarily the preferred source for information about breast cancer amongst this Internet savvy population. Narratives written by our participants suggested that women are less concerned about where the information originated than the actual quality and utility of the information itself; however, it should be noted that the narratives we read did not provide insight into how participants judged the quality of the information they found. Participants clearly expressed a desire for accurate, up-to-date information that was applicable to their form of illness. For example, women did not want information simply about “chemotherapy”—they sought information about the specific regimen (or combination of regimens) for their specific type of breast cancer. Locating as much information about treatment options that pertained to their specific circumstances as possible was always more important than the source.
Concerns about information in general included that it might not be completely up-to-date, and that it was not specific enough. Confusion and contradictory information were problematic for women. Medical information was best delivered by a surgeon or oncologist—if the relationship was strong, which was not always the case. Other information that our participants sought—very broadly about living with breast cancer—including side effects of treatments, how to talk to family and friends, how to cope, and how to make the best decision—was best delivered by another woman who had experienced a similar journey. This confirms a finding by Dunn and Steginga (2000) that young women with breast cancer are interested in meeting and sharing experiences with other young women who have breast cancer.
Affect was prominent in all narratives, and many women expressed grief, anger, sadness and fear. It may be that at different points in the cancer trajectory, different emotional and information needs are dominant. For some women, the initial information drive is to diminish fear of dying, whereas once the news of diagnosis has ‘settled’ and decisions need to be made, highly specific treatment information is sought. Unfortunately, the Internet does not reassure in the former case, whereas in the latter, there is much available and helpful information. Much later in the cancer journey sense-making was associated with positive affect, even joy. One woman summed it up by saying, “Many people experience an epiphany after having faced their mortality. It would be nice to have a Canadian peer-led survivor network to showcase the challenges but also the beauty of life after cancer.” The desire to share experiences online and give to others was apparent in this sample of women, and has been described before (Barnett & Hwang, 2006).
To our surprise, our study participants seldom wrote about information needs associated with either sexuality or alternative/complementary therapies.5 This could be due to a reluctance to write about these very personal issues online and send them to a stranger, without being sure of where the data would end up. This differs from research conducted by Pereira, Koski, Hanson, Bruera & Mackey, (2000), who found that women used the Internet to search for information about alternative therapies.
Based on our study we offer the following considerations for those providing online services for young women with breast cancer:
- •Ideally, online information would never be provided as an end point, but would be accompanied by an invitation to contact a health professional for more information;
- •The fact that online information is provided and available does not mean it will be utilized, therefore regular evaluations of online information should be conducted, and health information providers should not view the provision of online health information as a substitute for other forms of information, but rather as a complement to other forms of information;
- •When possible, information should be available in multiple formats in order to accommodate varied information preferences (i.e. we found that some women went online only to find out where they could get print materials such as library books);
- •Information should be provided early on and offered more than once: some women need and want information immediately following diagnosis, but others need time to take in the news of the diagnosis before they are ready to receive or look for information. In addition, online information resources should be organized in a format that supports women in controlling the amount of information they receive, and aids them in locating only the type of information they are seeking (e.g., if a woman is looking for information about her chemotherapy regime, she should not have to wade through pages of side effects of other chemotherapies);
- •Given the prevalence with which our participants indicated that they sought information in the context of decision making, and to learn about what would come next, it would be prudent to organize online resources in relation to these themes (e.g., through tagging, location of links on portals, etc.);
- •Where possible, young women should be given the chance to interact with other young women who have or have had breast cancer;
- •Young women with breast cancer should be involved in the production stages of online and print materials;
- •Care should be taken not to put too much pressure on women to understand every aspect of their disease, if they are not ready to do so (e.g., some women felt such an obligation because of the information they received);
- •More attention should be paid to the individual information needs of women even within this specific group, as they vary widely. Brown, Koch, and Webb (2000) conducted in depth interviews with six women who had undergone surgery for a non-invasive breast cancer. Their findings were consistent with previous research which found different responses to, and preferences for the amount and timing of information. Their findings highlight the importance of ensuring that means of information delivery are diverse enough to meet individual needs.
This research study suggests that young women with breast cancer use the Internet to make sense of their experience; that the Internet serves some motivations better than others; and that health information seeking, while often a problem-solving, rational process, is also a means to satisfy changing emotional needs. Access to the Internet is not the only barrier to use of the Internet for health information seeking amongst young women with breast cancer. By focusing on the information needs of women with access to the Internet, and exploring what their information needs are and how they met their needs both on and off of the Internet, we were able to see that Internet use is but one source of information for young women facing breast cancer. These women have specific health information needs that will not be met simply through the provision of more information or through its delivery through more channels. In fact, it may be that the greater the amount of information available—especially through the Internet—the greater people's expectations will be that specific information should be available. In other words, as Ziebland, Chapple, Dumelow, Evans, Prinjha & Rozmovits (2004) have noted, the Internet may be driving expectations about the extent to which patients are informed about their condition. We are uncomfortable with the notion that Internet delivery of health information coincides with a trend of patients desiring to be more informed about their illnesses and care, and instead suggest there is a need for more research that considers the Internet as both serving and driving the desire and expectations for empowered patients and empowered health information consumers.
This leads to another strong theme that emerged from our research: what are the implications of being so involved in the decision-making process with regard to a potentially life-threatening situation? ‘Patient empowerment' has been lauded as allowing people to have control over their lives and their bodies, but does this place pressure on individuals to make choices that in some cases they are neither equipped to make, nor interested in making? Fogel (2004) found that consumption of Internet health information was not associated with psychological coping in breast cancer patients. Eysenbach (2003) proposed a conceptual framework for the possible links between Internet use and its effect on cancer outcomes, which suggested that too much information and/ or low quality information can lead to confusion, which in turn can contribute to stress, anxiety and depression, all of which can adversely impact health outcomes.
Ultimately, our study allowed us to demonstrate that even in this Internet savvy population, the Internet is not necessarily an unproblematic means of disseminating health information, and that the huge amount of health care information available does not automatically mean that information is useful to those who seek it, or even particularly easy to find. Our research reported here suggests that for some, seeking information about breast cancer online can contribute to confusion as well as stress, and the inability to effectively filter Internet based information is one reason some young women with breast cancer avoided use of the Internet as a source of information about their illness.
Memorandum by GJW Government Relations Ltd, Health Affairs, http://www.parliament.the-stationery-office.co.uk/pa/ld199900/ldselect/ldeucom/95/95we29.htm, accessed online, July 2, 2004.
For the purposes of this study “young women with breast cancer” were defined as women who were diagnosed with breast cancer at age 45 or younger. It should however be noted that there is no consistent definition for what constitutes ‘young; amongst women with breast cancer. One article we read indicated that women over 60 were older women, implying that those under 60 were young women.
Dissemination to cancer clinics across the province was possible because of our links with partner organization the BC Cancer Agency.
The inquiry outlined here was undertaken as part of a larger project concerned with the role of technology in the production, consumption and use of health information, titled ACTION for Health, funded by the Social Sciences and Humanities Research Council of Canada. Our research questions were generated in collaboration with our research partner, the British Columbia Cancer Agency (BCCA).
We recognize that there is no strict definition for “alternative / complementary therapies”—and that the definition may be shifting as treatments such as massage and chiropractic are increasingly accepted by traditional health care practitioners—but we had expected to hear more about a range of treatments apart from standard cancer therapies.