Uso de Internet: búsqueda de información entre las mujeres jóvenes con cáncer de mama

Journal of Computer-Mediated Communication

Situating Internet Use: Information-SeekingAmong Young Women with Breast Cancer

Ellen Balka

Simon Fraser University, Vancouver Coastal Health Centre for Clinical Epidemiology and [email protected]

Guenther Krueger

Simon Fraser University, [email protected]

Bev J. Holmes

Simon Fraser University, [email protected]

Joanne E. Stephen

British Columbia Cancer Association, [email protected]

In recent years considerable attention has been focused on the potential of the Internetas a means of health information delivery that can meet varied health information needsand empower patients. In this article, we explore utilization of the Internet as a meansof health information consumption amongst young women with breast cancer who wereknown Internet users. Focusing on a population known to be competent at using the Internetallowed us to eliminate the digital divide as a possible explanation for limited use of theInternet for health information-seeking. Ultimately, this allowed us to demonstrate thateven in this Internet savvy population, the Internet is not necessarily an unproblematicmeans of disseminating health care information, and to demonstrate that the huge amountof health care information available does not automatically mean that information is usefulto those who seek it, or even particularly easy to find. Results from our qualitative studysuggest that young women with breast cancer sought information about their illness inorder to make a health related decision, to learn what would come next, or to pursue socialsupport. Our respondents reported that the Internet was one source of many that theyconsulted when seeking information about their illness, and it was not the most trusted ormost utilized source of information this population sought.

doi:10.1111/j.1083-6101.2010.01506.x

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

Journal of Computer-Mediated Communication 15 (2010) 389–411 © 2010 International Communication Association 389

is often viewed as an optimal way to disseminate health information because it offersprivacy, immediacy, a wide variety of information, and a variety of perspectives(Bischoff and Kelley, 1999). An expansion of health information websites has beensupported by health policy documents in many countries, which suggest that greateravailability of health information via the Internet will lead to the emergence of moreinformed patients who are better able to assess the risks and benefits of differenttreatments for themselves.

For example, a Health Canada planning document identified the provision of‘‘relevant, credible and timely health information to the public to empower individualsto manage their own health through a Canadian Health Network and self-care andtelecare services’’ (Health Canada, 2000: 79) as one of three priorities. Services suchas 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 withhealthcare professionals’’ (Department of Health, 2004). Similarly a European Unionpolicy document argues that ‘‘as Member States try to contain healthcare costs andthe paternalist model of ‘doctor-knows-best’ is eroded, patients want to learn abouttheir condition, its treatments, and preventative measures’’ and calls for promotionof ‘‘the educational power of the Internet to inform patients and their carers.’’Reflecting an ‘‘underlying philosophy of e-health . . . to empower the individual tolook after his/her own health most effectively’’ (United Kingdom Parliament, 2000),1

similar assertions have been made in Australia (Gaby & Henman, 2004), New Zealand(where a briefing for an incoming Minister of Health suggested that ‘‘meaningful dataand information can be used to empower Maori communities’’) (Ministry of Health,2002), and numerous other countries as well. Clearly, consumer health informationis seen as central to patient empowerment and consumer/ patient involvement inhealth decision making (Henwood, Wyatt & Hart, 2001).

Articles about the potential of the Internet to offer help and hope to peoplesuffering a range of health conditions—or to those who simply aim to keephealthy—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-relatedinformation (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 forpeople with health concerns (Rice & Katz, 2001).

In recent years, as interest in the use of the Internet as a means of delivery ofonline health information has grown, authors have increasingly considered a rangeof issues related to online health information seeking. For example, several authorshave noted that online health information seekers tend to be better educated andwealthier 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

390 Journal of Computer-Mediated Communication 15 (2010) 389–411 © 2010 International Communication Association

that use of the Internet for online health information seeking is greater amongCaucasians than among ethnic minorities (Fogel, Morgan and Davis, 2005; Fogelet.al., 2002a; Talosig-Garcia and Davis, 2005). Differences in rates of Internet usefor health information consumption have also been noted amongst urban and ruralpopulations (Gustafson, McTavish, Stengle, Ballard, Hawkins, Shaw, Jones, Julesberg,McDowell, Chen, Volrathongchai, and Landucci, 2005) and in relation to age (Cottonand Gupta, 2004; Eysenbach, 2003). Lastly, not being employed full-time, engaging inother Internet activities and being female have been identified as consistent influencesof higher Internet health information searching (Rice, 2006).

Although there has been growth in recent years in scholarly inquiry concernedwith varied aspects of online health information seeking, several issues related tothe Internet as a means of online health information seeking have received onlylimited attention, and warrant further investigation. For example, many studiesabout online health information seeking discuss the activity out of context, ignoringother means by which people may also look for information. Studies that doaddress Internet health information-seeking in the context of other informationsources are often quantitative (e.g., Cotton & Gupta, 2004; Satterlund, McCaul &Sandgren, 2003), and therefore miss opportunities to explore important questionsabout the various meanings of ‘information,’ or to investigate the subtleties ofthe information-seeking process itself. Seldom has the information-seeking journeybeen explored as a trajectory from the point at which people desire information, tothe ways and means by which they search for information, with some exceptions(e.g., Anigbogu & Rice, 2001; Rozmovitz & Zeibland, 2004). Consequently, littleis known about how the Internet may factor into the health information-seekingjourney overall, about how satisfied people are with their Internet health informationsearches and the information they find online, and about what people do with theinformation located through online searches. We sought to address these issues in ourresearch.

Our study explores the Internet health information-seeking journey undertakenby a specific group of patients: young women with breast cancer, defined for ourpurposes 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 informationneeds of this population (Dunn & Steginga, 2000; Ontario Breast Cancer CommunityResearch 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 toexplore the realities of Internet use for health information-seeking in a populationthat 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 youngwomen with breast cancer, we hoped to gain insights about how Internet basedhealth information consumption fits into broader patterns of health informationconsumption. Our research questions were formulated in an effort to help us both


situate the Internet within the broader constellation of health information sourcesused by health information seekers, and gain insights about health information needsof young women with breast cancer, which might be of use in the planning of bothoff-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 thegeneral population of people with cancer. Balmer (2005) highlights the importance ofthe Internet as a source of information for this group, and calls for more recognitionof this phenomenon by health professionals. Ziebland, Chapple, Dumelow, Evans,Prinjha & Rozmovits (2004) found that cancer patients used the Internet for a widerange of information and support needs, many of which are unlikely to be metthrough what the authors referred to as conventional health care.

Most studies about cancer and Internet health information focus on specifictypes of cancer, recognizing that for the most part, different types of cancer affectdemographically different populations, potentially resulting in different informationpreferences, needs and health information-seeking styles. Several studies about breastcancer and online information have been undertaken. Pereira, Koski, Hanson, Brueraand Mackey (2000) found that the majority of patients who use the Internet foundthe information online to be useful (88%). Fogel, Albert, Schnabel, Ditkoff & Neugut(2002b) found that use of the Internet for information about breast health issueswas associated with greater social support and less loneliness in women with breastcancer. In Raupach and Hiller’s (2002) study of women who had received primarytreatment for breast cancer, although the women reported high levels of satisfactionwith brochures and the Internet, they rated information received personally, througha physician, a nurse or support group members even higher. Satterlund, McCauland Sandgren (2003) suggest the Internet plays an important role for breast cancersurvivors after medical treatment has ended.

We found only a few qualitative studies in which women with breast cancer andtheir Internet use were the subject of study. For example, Wolf (2004) conducted twofocus groups (four women each) to explore the information needs of women whohave undergone breast reconstruction and found that although the Internet was avaluable source of information for those women, other information sources such aswritten information, contact with other patients, and the surgeon were also importantfor this population. In Wolf’s study, the women had contact with a breast healthnurse who played an important role in facilitating information access, regardless ofits source. Despite suggestions by the authors of several studies that breast cancerpatients who use the Internet to search for health information are younger, moreeducated, 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 thepopulation we have defined as young women with breast cancer and their information


needs and information-seeking—on the Internet or elsewhere. Two studies wereconcerned with information about fertility (Partridge, Gelber, Peppercorn, Sampson,Knudsen & Laufer, 2004; Thewes, Meiser, Rickard, & Friedlander, 2003). A thirdstudy (Grosser, 2003) discussed the specific needs of younger women, but appears tobe anecdotally based and was largely dedicated to informational needs associated withfuture 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 specificallyabout information needs or information-seeking, describes key concerns of youngwomen with breast cancer—including depression, fear and anger—and highlightsinterventions suggested by participants, including peer support for addressing thekey concerns identified by participants. Williamson (2005) used ethnographic meth-ods to explore the informational needs of women with breast cancer, within thecontext 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’sresearch, she found that young women had specific and unmet informationneeds.

The context: young women with breast cancerAlthough breast cancer primarily affects women over 50, 20 percent are youngerthan that (Canadian Cancer Society, 2008). Although the prevalence of breast canceramong young women is significant, there has been very little research conductedabout young women’s experiences of having breast cancer. This is especially troublinggiven that young women’s experiences of cancer are different from post-menopausalwomen’s experiences in a number of ways. First, the diagnosis and treatment ofbreast cancer in younger and older women often differs. Second, young womenoften exhibit more aggressive manifestations of breast cancer, and are diagnosedat a later stage of the disease (Breaden, Rudge & Maddocks, 2002). Finally, theyare also coping with different life challenges from their older counterparts, as theyoften 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 begreater in younger women than older women (Dunn & Steginga, 2000; Williamson,2005). Young women report that information that speaks to their concerns issimply not available. Comments that ‘‘all the information that we have is geared towomen over 50’’ (Ontario Breast Cancer Community Research Initiative, 2003) werefrequently expressed in a recent forum about breast cancer and young women, andWilliamson (2005) found that the informational needs of women under 45 differedsignificantly from those over 45. It is not lack of information that is a problem: youngwomen have reported being ‘‘bombarded by pamphlets and booklets’’ (OntarioBreast Cancer Community Research Initiative, 2003) but still their informationalneeds do not seem to be met. It appears that the specific types of information theyneed are unavailable (Williamson, 2005).


SummaryAlthough some research had been conducted about online health information-seeking, the activity has rarely been studied as a trajectory from the point of needinginformation through the process of searching for it to the end point of using it. Inaddition, Internet health information-seeking has not been explored as one aspect ofgeneral health information-seeking. Finally, there has been little research conductedabout the information needs and information-seeking behaviour of young womenwith breast cancer. To address these gaps in the literature, we conducted a qualitativestudy that explored the different types of information desired by young womenwith breast cancer, how this group of women who are experienced in using theInternet meet their information needs, the extent to which the health informationyoung women with breast cancer find—and the means through which they findit—met their needs, and the degree to which the Internet is or is not central to thehealth information seeking strategies of Internet savvy young women with breastcancer.

Approach and Methodology

In order to gain insights about how health information available via the Internetfit within broader contexts of health information-seeking for young women withbreast cancer, we adopted a qualitative, person-centered methodology consistentwith Dervin’s (1999) sense-making methodology. A cancer diagnosis signifies alifetime of ‘‘making sense’’ in a fragmented and uneven information environment(Hesse, Arora, Beckjord & Rutten, 2008). We were interested in situating thisstudy within the context of sense-making throughout critical junctures in the breastcancer journey: discovery of a lump, initial diagnosis, treatment decision-making,and completing treatment. Similar to Dervin’s (1999) approach, we were interestedin enlarging the concept of information beyond what Dervin referred to as ‘theusually institutionally-prescribed scientific facts’ to a view of information situatedwithin the context of human practices and acts of sense-making. Towards thisend, we provided respondents with an opportunity to narratize their experiences inways that were personally meaningful, rather than imposing pre-assigned responsecategories on their experiences. Our approach also allowed respondents to anchortheir experiences to specific time points and events.

We designed the study to make extensive use of the Internet. Our sample waspurposive: we sought women who had been diagnosed with breast cancer prior toage 45 at the time of diagnosis, who were also known to use the Internet for healthinformation seeking. Although research is currently being undertaken that focuseson 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 isassumed 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, andfinancially stable people. Focusing on a population known to be competent at usingthe Internet allowed us to eliminate the digital divide as a possible explanation forlimited use of the Internet for health information-seeking amongst women with breastcancer.

RecruitmentWe recruited our study population through a group of activist women associatedwith an organization called The Young and the Breastless. This group has a websitethat attracts national attention, which we used for posting a study recruitmentnotice. We also posted notices on other breast cancer websites (BC Cancer Agency,Canadian Cancer Society, BC and Yukon Division) and in cancer clinics acrossBritish Columbia (Vancouver, Fraser Valley, Kelowna, Victoria), and received mediacoverage in local newspapers and television.3 Our recruitment notice requested thatwomen contact us via e-mail if they were interested in ‘‘telling their story’’ abouttheir experiences with health information-seeking, but also offered a phone numberto call for further information. Participants learned about the study though web sites,e-mail notices that circulated amongst breast cancer survivors, and through printnewsletters and newspapers. All but two participants made initial contact about thestudy through e-mail; the others initially contacted research staff via telephone. Allstudy participants owned or had access to a computer, and after the initial contactinteracted with researchers via the Internet.

After obtaining signed consent forms from participants (required by our researchethics review boards), we began the process of soliciting written narratives from par-ticipants about their information-seeking journeys. Participants were provided withpredetermined sentence stems to encourage them to think about what they neededat certain points in their diagnosis and treatment trajectory. The use of sentencestems was derived from Loevinger’s (1970, 1998) work, and, is a common projectivetechnique used to elicit psychologically significant narratives from individuals, whenthe focus of enquiry is individual meaning-making. Examples of sentence stems weprovided 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 stemspecifically about the Internet because we wanted to see what women wrote aboutthe Internet unprompted, and how online health information-seeking seemed to fitinto broader health information-seeking processes. Exploring the potential of theInternet from the outset, we believed, would ‘‘confirm the technocratic vision of thecentrality and normativity of technology’’ (Wyatt, Thomas, & Terranova, 2002).

The supplied sentence stems were only a guideline and could be used in whateverfashion the participants wished to. Women were also told they could simply writetheir 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 aguide. This meant that the submissions we received varied considerably in tone and


length. Some women wrote fascinating—even literary—accounts with a great dealof personal detail.

Although most of the study was conducted online (from participant emails ofinitial interest, to the sending of consent forms for information, to emails back andforth 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 mailus back a completed demographic form and consent form. As participants contactedus 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 masterdatabase so that completion rates could be determined.

Response to recruitmentWe received 78 expressions of interest and 35 women completed the narratives, fora completion rate of 45 percent. Respondents ranged in age from 28 to 45 with anaverage age of 39. Table 1 provides socio-demographic details about our participants.

Although the completion rate was good for this type of study (Cook, Heath, &Thompson, 2000; Zhang, 1999), we remain interested in learning more about whywomen did not complete the study (submit a narrative)—especially since many ofthe women who initially contacted us to express interest in the study did not respondafter our initial contact indicated that they intended to. Reasons for non-responsefollowing 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 touchwith us, rather than having an interviewer call them to book a time), and/or thedifferent tasks involved in completing the submission (for instance, participants wererequired to fill in consent and demographic forms by hand and mail them back tous, even though their narratives were to be emailed back). In light of the increasingpopularity of online research and the potential advantages of online research (e.g., theability to reach geographically dispersed participants), further research that addressesissues of non-completion may be warranted.

Coding and analysisNarrative information we collected from study participants was analyzed with theaid of NVivo, qualitative data analysis software. Narratives were coded as we receivedthem, consistent with qualitative approaches that suggest coding categories shouldemerge 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 ourparticipants. We developed core concepts using the constant comparative method,comparing each narrative to those that preceded it. Examples of the core conceptsinclude frustration at lack of specific, tailored information; lack of connection to the


Table 1 Participant socio-demographic characteristics

Socio-demographic Characteristics

Characteristic n %

Annual income< $40,000 3 9$40,000–$60,000 12 33$60,000–$80,000 5 14$80,000–$100,000 5 14Over $100,000 8 22Unavailable 2 6

Relationship statusSingle 10 29Cohabiting 21 60Separated/Divorced 4 11

Employment statusUnemployed due to cancer 3 9Unemployed for other reasons 2 6Working full time 15 43Working part time 7 20Sick leave/disability 4 11Homemaker 2 6Student 2 6

EducationSecondary 4 11Post-secondary 30 86Unavailable 1 3

Note: Because of rounding, percentages may not total 100.

world of older women who have breast cancer; affinity with young women who havebreast cancer; information overload or saturation; conflicting information; distrustof 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 ableto move into the more specific subject area of health information-seeking behaviour.Based on our initial concepts and taking into account the literature and contextof the ACTION for Health project (a larger research project through which thisresearch was undertaken which had as its focus the role of technology in healthinformation production and consumption,4) we then coded our narratives using amore structured, deductive approach that allowed us to problematize a number ofassumptions 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 wewere able to explore how the Internet fit into the overall health information-seekingstrategies 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 theyfound information they located via the Internet useful, and what they did with theinformation they found. Our analysis of participants’ narratives yielded insights abouttheir 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 sourceswas, and what participants did with the information they found. Each of these areasis addressed below.

Findings

MotivationWhat drives young women with breast cancer to seek information? Initially, it is thefrightening discovery of a lump, or confirmed diagnosis of breast cancer itself, and theneed to determine meaning and significance, anticipate what lies ahead, and reduceuncertainty. ‘‘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 motivatorwas the need to gather information in order to make a decision regarding treatment.One participant described the information challenge she faced that motivated her toseek information: ‘‘this was a terrible time for me. I agonized over the decision aboutwhich treatment to take and felt that I was being asked to make a decision (in twodays) without having enough knowledge on which to base my decision.’’

About half of participants also indicated that confirmation or verification ofexisting information motivated them to search for more information. For example,women said they checked out what had been told to them by their physicians tomake 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 regimesuggested to me was the best for someone my age.’’ Another told us: ‘‘I immediatelywanted information that would help me understand what was going on and help meto assess the situation.’’

Other drivers for information-seeking which were mentioned less frequently werethe need for control, and the desire to be informed in order to be able to questiondoctors. ‘‘Knowledge is power became my motto right off the bat. It kept me saneat a very emotional time,’’ said one woman. However, some women specificallystated 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 wasoverwhelmed by the information. I was frightened and stopped searching.’’

ContentWhat is the type of information sought by young women with breast cancer? Severalwomen said they initially wanted to know if they were going to die. The searchfor survival statistics proved fruitless, though, since such information cannot simplybe applied to an individual case to determine prognosis . Most women desired arange of information about medical treatments—the options, the side effects, therelative effectiveness compared to other treatments, the recovery time and so on.Many also expressed psychosocial information needs, such as ‘‘how would I tell mymom, and how would I cope?’’ There was an equal desire for what many respondentscalled practical information—how much time they should take off work for certainprocedures, how to talk to their children, parents or friends, where to get financialsupport, how to cope emotionally, and whether to tell employers. Some of theinformation respondents sought, they found; other information was nowhere to befound. Two strong themes regarding content were the need for information relatingto young women who are dealing with careers, children and busy lives, and theneed 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.’’

MeansAll respondents indicated that they used a variety of means to seek and receiveinformation. About one third of respondents went to the Internet first, one thirdwent to print material first, and one third sought out a face-to-face interaction with afriend, doctor or other health professional, or another women who had lived throughbreast cancer. Online modalities were varied. Women described surfing the net,using a live chat site, or visiting websites which were quickly bookmarked for futurereference. Some used online discussion groups or just emailed someone for moreinformation or to set up a time to speak in person. In terms of print material byfar the most useful resource mentioned was Dr. Susan Love’s Breast Book, which onethird 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 memore of the information which I needed.’’

Videos were mentioned only twice. Access to peer reviewed clinical literature wasalso rarely mentioned. Often, information obtained through one source (such as ahealth professional or a friend) was verified through other means, and this was onereason that some women sought information online. In addition, finding one pieceof information sometimes provided the motivation to locate other information in adifferent modality, in order to confirm the original information.

Although all of our participants had Internet access, not all of them used theInternet to seek information about breast cancer. A very few participants avoided theInternet on principle, finding it overwhelming. One participant told us the Internet


created more questions than answers. Some women used the Internet only for specifictasks, such as checking out information they had heard elsewhere, or connectingwith 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 bestmeans—sometimes the only means—for getting certain information, for instancewhat to expect on a day-to-day basis. Some women wanted to get this informationfrom others face-to-face, while others preferred chat rooms or online discussionforums.

Utility of informationHow useful did women find the information they sought and the means throughwhich they sought it? Not surprisingly, the extent to which our participants foundthe information they located useful varied, no matter what format it came in andhow it was delivered. The Internet as a source of medical and treatment informationwas rated highly by some and poorly by others. Comments about the usefulness ofinformation women located from online sources ranged from ‘‘I found this site tobe one of the absolute best,’’ to ‘‘couldn’t find anything useful.’’ Women’s views ofthe Internet—as well as information they found on it—varied from excellent touseful to overwhelming to frightening. Many women mentioned the desire to knowwhat sites were legitimate. One tactic used by some women was to generate a listof sites they would visit over and over again. Being overwhelmed with informationthat was not relevant was a frequent theme identified in relation to Internet basedinformation-seeking. Women who clearly were more experienced with the Internetand comfortable online had less difficulty with Internet based information, and talkedabout being careful about how they searched online. Being careful referred not onlyto where, but the extent to which, they searched. The Internet was also seen by someas a means by which women connected with other women to get information. Itwas usually rated well for this purpose, although contact made online did not alwaystranslate into a subsequent useful encounter.

Participants’ opinions of books and print materials were less variable than theirviews of Internet based health information. Overall, participants clearly seemed morecomfortable with reading print materials than with surfing the Internet, althougha concern with books and print material was whether it would be current, sincenew findings about breast cancer and treatments are frequently released, and booksand pamphlets tend to be updated with lesser frequency than many web sites. Allparticipants found face-to-face contact, and the information they received fromthat contact, the most useful and helpful of all. That is not to say they werealways pleased with the contact or with the information, particularly if it came frominsensitive 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 informationdiscussed 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 womenwho have grown children. Another participant told us: ‘‘When I eventually venturedout to the local breast cancer support group, I found the other women congenial, butnot much support.’’ This was attributed to the age difference. As one participant putit, ‘‘I feel like it was like being a teenager and given advice on being an adult. I justwasn’t ready for that.’’ Overall, however, face-to-face or talking with other womenrated highly as far as utility was concerned.

OutcomeOur final analytic category, outcome—meaning what people did with the informa-tion—overlapped with the ‘‘motivation’’ coding at times. In other words, womensought information because their motivation was to make a decision, and makinga decision was the outcome. Similarly, if being prepared was a motivating factor inseeking information, a successful outcome of seeking that information was being pre-pared. One woman stated that ‘‘as a result, I could have a meaningful discussion withmy oncologist’’ following her research on chemotherapy. Another reflected a similarsentiment: ‘‘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 decisionmaking processes. Over and over again we heard the words ‘‘I decided. . . ’’ in ournarratives. For example: ‘‘I then decided that it was time to have the genetic testingdone,’’ or ‘‘I then decided to have preventative surgeries.’’ Other outcomes relatedto information women sought included discussing information with their physician,becoming hopeful and strong, or being totally confused. A strong theme in this areawas the outcome of helping others. Women discussed their experiences, includingtheir 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 usthat following treatment ‘‘I could contribute, advising those women who were alsocoping with the ravages of CEF [a chemotherapy regimen].’’

Discussion and Implications

Many findings from our analysis are consistent with those reported previously. Thewomen used Internet information to prepare themselves for treatment decisions anddiscussions with physicians (Rice & Katz, 2006) as well as to reduce uncertainty(Brashers, Goldsmith & Hsieh, 2002; Zanchetta & Moura, 2006). They had concernswith the legitimacy of information (Hesse, Arora, Beckjord & Rutten, 2008); andcompared Internet delivered information favorably to face to face interactions whenhealth care providers or friends and peers who were insensitive (Anigbogu & Rice,2001). They also valued opportunities for practical and experiential knowledge gainedthrough peer contact in online support groups, as has been described (e.g., Barnett &Hwang, 2006). Lastly, as identified in other cancer populations, information needswere complex and changed over time (Rosmovitz & Ziebland, 2003).


Our analysis also revealed that the Internet is only one among many sources ofinformation for young women with breast cancer. This finding is consistent withother research which has investigated the constellation of informational resourceshealth information seekers consult. For example, Cotton and Gupta (2004) foundthat both off-line and online health information seekers consulted multiple sourcesof information (e.g., books, magazines and physicians as well as friends, and, foronline information seekers, the Internet), and Rozmovits and Ziebland (2003) foundthat breast cancer and prostate cancer online information seekers often comparedinformation from several sources before believing it. Similarly, our findings suggestedthat nearly half of our respondents sought information in order to clarify informationgained from another source.

Our research design did not allow us to determine to what extent, if any, viewsabout the usefulness of the information found online related to information seekers’health literacy or online searching skills; however this may be an area worthy offurther investigation. Benigeri and Pluye (2003, p. 383) have noted that ‘‘there arevery few tools to help people find relevant information in this mountain.’’ It isincreasingly recognized that health information seekers who go online to answertheir questions may face general and/ or health literacy issues, which for many makesit 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 theInternet, and may initially go online to look for health information, they are unlikelyto 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 locatinghealth information had consulted the Internet prior to asking for help locating healthinformation (ACTION for Health, 2005). One possible explanation is that Internetusers were unable to find what they sought online, and subsequently sought theassistance of a human information intermediary to meet their needs. Through ourstudy, the explanation is broadened: it is not necessarily that women do not find whatthey are looking for, but that they want comprehensive information and multipleopinions. Little is known about where the Internet fits into the broader constellationof health information resources and health information seeking trajectories (e.g.,whether the Internet is the first source of information and health information seekerssubsequently consult other information sources for clarification of information theyfound online, or whether other information sources leave people with questionsthat they then seek to answer online). Our study reveals that this gap in knowledgeis understandable, as health information-seeking is a complex activity. However,gaining insights about how Internet based health information seeking relates to otherhealth information resources as well as the health information seeking trajectory willbe important in that it has implications for both for design of the content of onlineinformation, as well as policy implications for how support services are delivered tothose seeking health information. If people are seeking out the support of librariansafter conducting Internet searches, healthcare organizations may want to invest


in hiring health librarians or patient navigators to assist with health informationsearches, or may want to invest in writing guides aimed at improving the search skillsof patient populations, rather than maintaining websites. The need for human healthinformation 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: TheGo-Betweens in a Changing Socio-Technical Landscape.

Even though young women with breast cancer may use the Internet for otherthings, including, for some, to maintain contact with others living with similardiagnoses, the Internet is not necessarily the preferred source for informationabout breast cancer amongst this Internet savvy population. Narratives writtenby our participants suggested that women are less concerned about where theinformation originated than the actual quality and utility of the information itself;however, it should be noted that the narratives we read did not provide insightinto how participants judged the quality of the information they found. Participantsclearly expressed a desire for accurate, up-to-date information that was applicableto their form of illness. For example, women did not want information simplyabout ‘‘chemotherapy’’—they sought information about the specific regimen (orcombination of regimens) for their specific type of breast cancer. Locating as muchinformation about treatment options that pertained to their specific circumstancesas possible was always more important than the source.

Concerns about information in general included that it might not be completelyup-to-date, and that it was not specific enough. Confusion and contradictoryinformation were problematic for women. Medical information was best deliveredby a surgeon or oncologist— if the relationship was strong, which was not alwaysthe case. Other information that our participants sought—very broadly about livingwith breast cancer—including side effects of treatments, how to talk to family andfriends, how to cope, and how to make the best decision—was best delivered byanother woman who had experienced a similar journey. This confirms a finding byDunn and Steginga (2000) that young women with breast cancer are interested inmeeting 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, differentemotional and information needs are dominant. For some women, the initialinformation drive is to diminish fear of dying, whereas once the news of diagnosishas ‘settled’ and decisions need to be made, highly specific treatment information issought. Unfortunately, the Internet does not reassure in the former case, whereas inthe latter, there is much available and helpful information. Much later in the cancerjourney sense-making was associated with positive affect, even joy. One womansummed it up by saying, ‘‘Many people experience an epiphany after having facedtheir mortality. It would be nice to have a Canadian peer-led survivor network toshowcase 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 hasbeen described before (Barnett & Hwang, 2006).

To our surprise, our study participants seldom wrote about information needsassociated with either sexuality or alternative/complementary therapies.5 This couldbe due to a reluctance to write about these very personal issues online and send themto a stranger, without being sure of where the data would end up. This differs fromresearch conducted by Pereira, Koski, Hanson, Bruera & Mackey, (2000), who foundthat women used the Internet to search for information about alternative therapies.

Based on our study we offer the following considerations for those providingonline services for young women with breast cancer:

• Ideally, online information would never be provided as an end point, but wouldbe accompanied by an invitation to contact a health professional for moreinformation;

• The fact that online information is provided and available does not mean itwill be utilized, therefore regular evaluations of online information should beconducted, and health information providers should not view the provision ofonline health information as a substitute for other forms of information, butrather as a complement to other forms of information;

• When possible, information should be available in multiple formats in order toaccommodate varied information preferences (i.e. we found that some womenwent online only to find out where they could get print materials such as librarybooks);

• Information should be provided early on and offered more than once: somewomen need and want information immediately following diagnosis, but othersneed time to take in the news of the diagnosis before they are ready toreceive or look for information. In addition, online information resourcesshould be organized in a format that supports women in controlling theamount of information they receive, and aids them in locating only the type ofinformation they are seeking (e.g., if a woman is looking for information abouther chemotherapy regime, she should not have to wade through pages of sideeffects of other chemotherapies);

• Given the prevalence with which our participants indicated that they soughtinformation in the context of decision making, and to learn about what wouldcome next, it would be prudent to organize online resources in relation to thesethemes (e.g., through tagging, location of links on portals, etc.);

• Where possible, young women should be given the chance to interact with otheryoung women who have or have had breast cancer;

• Young women with breast cancer should be involved in the production stages ofonline and print materials;

• Care should be taken not to put too much pressure on women to understandevery aspect of their disease, if they are not ready to do so (e.g., some women feltsuch an obligation because of the information they received);


• More attention should be paid to the individual information needs of womeneven within this specific group, as they vary widely. Brown, Koch, and Webb(2000) conducted in depth interviews with six women who had undergonesurgery for a non-invasive breast cancer. Their findings were consistent withprevious research which found different responses to, and preferences for theamount and timing of information. Their findings highlight the importanceof ensuring that means of information delivery are diverse enough to meetindividual needs.

Conclusion

This research study suggests that young women with breast cancer use the Internetto make sense of their experience; that the Internet serves some motivations betterthan others; and that health information seeking, while often a problem-solving,rational process, is also a means to satisfy changing emotional needs. Access to theInternet is not the only barrier to use of the Internet for health information seekingamongst young women with breast cancer. By focusing on the information needsof women with access to the Internet, and exploring what their information needsare and how they met their needs both on and off of the Internet, we were ableto see that Internet use is but one source of information for young women facingbreast cancer. These women have specific health information needs that will notbe met simply through the provision of more information or through its deliverythrough more channels. In fact, it may be that the greater the amount of informationavailable—especially through the Internet—the greater people’s expectations will bethat specific information should be available. In other words, as Ziebland, Chapple,Dumelow, Evans, Prinjha & Rozmovits (2004) have noted, the Internet may bedriving expectations about the extent to which patients are informed about theircondition. We are uncomfortable with the notion that Internet delivery of healthinformation coincides with a trend of patients desiring to be more informed abouttheir illnesses and care, and instead suggest there is a need for more research thatconsiders the Internet as both serving and driving the desire and expectations forempowered patients and empowered health information consumers.

This leads to another strong theme that emerged from our research: what arethe implications of being so involved in the decision-making process with regardto a potentially life-threatening situation? ‘Patient empowerment’ has been laudedas allowing people to have control over their lives and their bodies, but does thisplace pressure on individuals to make choices that in some cases they are neitherequipped to make, nor interested in making? Fogel (2004) found that consumptionof Internet health information was not associated with psychological coping in breastcancer patients. Eysenbach (2003) proposed a conceptual framework for the possiblelinks between Internet use and its effect on cancer outcomes, which suggested thattoo 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 adverselyimpact health outcomes.

Ultimately, our study allowed us to demonstrate that even in this Internet savvypopulation, the Internet is not necessarily an unproblematic means of disseminatinghealth information, and that the huge amount of health care information availabledoes not automatically mean that information is useful to those who seek it, oreven particularly easy to find. Our research reported here suggests that for some,seeking information about breast cancer online can contribute to confusion as well asstress, and the inability to effectively filter Internet based information is one reasonsome young women with breast cancer avoided use of the Internet as a source ofinformation about their illness.

Notes

1 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.

2 For the purposes of this study ‘‘young women with breast cancer’’ were defined aswomen who were diagnosed with breast cancer at age 45 or younger. It should howeverbe noted that there is no consistent definition for what constitutes ‘young; amongstwomen with breast cancer. One article we read indicated that women over 60 were olderwomen, implying that those under 60 were young women.

3 Dissemination to cancer clinics across the province was possible because of our linkswith partner organization the BC Cancer Agency.

4 The inquiry outlined here was undertaken as part of a larger project concerned with therole of technology in the production, consumption and use of health information, titledACTION for Health, funded by the Social Sciences and Humanities Research Council ofCanada. Our research questions were generated in collaboration with our researchpartner, the British Columbia Cancer Agency (BCCA).

5 We recognize that there is no strict definition for ‘‘alternative / complementarytherapies’’—and that the definition may be shifting as treatments such as massage andchiropractic are increasingly accepted by traditional health care practitioners—but wehad expected to hear more about a range of treatments apart from standard cancertherapies.

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Uso de Internet: búsqueda de información entre las mujeres jóvenes con cáncer de mama