Journal of Computer-Mediated Communication

Situating Internet Use: Information-Seeking

Among Young Women with Breast Cancer
Ellen Balka
Simon Fraser University, Vancouver Coastal Health Centre for Clinical Epidemiology and Evaluation
ellenb@sfu.ca
Guenther Krueger
Simon Fraser University, gkrueger@telus.net
Bev J. Holmes
Simon Fraser University, bev.holmes@telus.net
Joanne E. Stephen
British Columbia Cancer Association, jstephen@bccancer.bc.ca
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 nd. 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.
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) 389411 2010 International Communication Association 389
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 benets of different
treatments for themselves.
For example, a Health Canada planning document identied the provision of
relevant, credible andtimelyhealthinformationtothe public toempower 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
helppeople totake more responsibility for their ownhealthandtocommunicate 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.
Reecting an underlying philosophy of e-health . . . to empower the individual to
look after his/her own health most effectively (United KingdomParliament, 2000),
1
similar assertions have been made in Australia (Gaby &Henman, 2004), NewZealand
(where a brieng 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 conditionsor to those who simply aim to keep
healthyare 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 peoples use of the Internet for health-related
information (Eysenbach & Kohler, 2002; Hardey, 1999; Hardey, 2001; Jadad &
Gagliardi, 1998). It is generally felt that the Internetpart 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
390 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
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, Jul ` esberg,
McDowell, Chen, Volrathongchai, and Landucci, 2005) and inrelationto age (Cotton
and Gupta, 2004; Eysenbach, 2003). Lastly, not being employed full-time, engaging in
other Internet activities and being female have been identied as consistent inuences
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 satised people are with their Internet health information
searches and the information they nd 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 specic group of patients: young women with breast cancer, dened for our
purposes here as womenwhowere diagnosedwithbreast 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 ts into broader patterns of health information
consumption. Our research questions were formulated in an effort to help us both
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 391
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 specic
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 Hillers (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
writteninformation, contact with other patients, and the surgeonwere also important
for this population. In Wolfs 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 afuent 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
populationwe have denedas young womenwithbreast cancer andtheir information
392 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
needs and information-seekingon 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 specic 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 womens life stages
(e.g., childcare, etc.). Dunn and Stegingas (2000) work, although not specically
about information needs or information-seeking, describes key concerns of young
women with breast cancerincluding depression, fear and angerand highlights
interventions suggested by participants, including peer support for addressing the
key concerns identied by participants. Williamson (2005) used ethnographic meth-
ods 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 Williamsons
research, she found that young women had specic 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 signicant, there has been very little research conducted
about young womens experiences of having breast cancer. This is especially troubling
given that young womens experiences of cancer are different from post-menopausal
womens 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, nances, 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 nancial 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
signicantly 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 specic types of information they
need are unavailable (Williamson, 2005).
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 393
Summary
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 ndand the means through which they nd
itmet 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
t within broader contexts of health information-seeking for young women with
breast cancer, we adopted a qualitative, person-centered methodology consistent
with Dervins (1999) sense-making methodology. A cancer diagnosis signies 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 Dervins (1999) approach, we were interested
in enlarging the concept of information beyond what Dervin referred to as the
usually institutionally-prescribed scientic 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 specic 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 afuent cancer patientssee for example Gustafson, McTavish, Stengle,
Ballard, Hawkins, Shaw, 2005or ethnic minoritiessee 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
394 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
seeking: Internet savvy women who are likely to be highly educated, young, and
nancially 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
limiteduse of the Internet for healthinformation-seeking amongst womenwithbreast
cancer.
Recruitment
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 par-
ticipants 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 Loevingers (1970, 1998) work, and, is a common projective
technique used to elicit psychologically signicant narratives from individuals, when
the focus of enquiry is individual meaning-making. Examples of sentence stems we
provided included When I was rst diagnosed with breast cancer, I felt. . . and
The information I felt I needed at rst was. . . We did not include a sentence stem
specically about the Internet because we wanted to see what women wrote about
the Internet unprompted, and how online health information-seeking seemed to t
into broader health information-seeking processes. Exploring the potential of the
Internet from the outset, we believed, would conrm 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 storyany lengthand 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
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 395
length. Some women wrote fascinatingeven literaryaccounts 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 clarication, to the submission of nal 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.
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, difculty 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 ll 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 specic, tailored information; lack of connection to the
396 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
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 14
Over $100,000 8 22
Unavailable 2 6
Relationship status
Single 10 29
Cohabiting 21 60
Separated/Divorced 4 11
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
Homemaker 2 6
Student 2 6
Education
Secondary 4 11
Post-secondary 30 86
Unavailable 1 3
Note: Because of rounding, percentages may not total 100.
world of older women who have breast cancer; afnity with young women who have
breast cancer; information overload or saturation; conicting information; distrust
of clinical information; and fear as an inhibitor to taking in information.
Once we had a feel for the landscape of our participants narratives, we were able
to move into the more specic 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;
peoples rst choice for health information is the Internet;
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 397
people will experience few problems nding the information they need;
the information they nd 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 t into the overall health information-seeking
strategies of our respondents, andallowedus toaddres sour overall researchquestions.
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
informationthey found. Our analysis of participants narratives yieldedinsights 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), howuseful information fromdifferent sources
was, and what participants did with the information they found. Each of these areas
is addressed below.
Findings
Motivation
What drives young women with breast cancer to seek information? Initially, it is the
frightening discovery of a lump, or conrmed diagnosis of breast cancer itself, and the
need to determine meaning and signicance, 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 conrmation or verication 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 specically
stated they did not seek out information, as they felt it would be too much for them
398 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
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.
Content
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 treatmentsthe 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 informationhow much time they should take off work for certain
procedures, how to talk to their children, parents or friends, where to get nancial
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 specic to them personally. One woman summed it up as
information that t for memy age group, my needs, my fears, and anxieties.
Means
All respondents indicated that they used a variety of means to seek and receive
information. About one third of respondents went to the Internet rst, one third
went to print material rst, 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 surng 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 Loves Breast Book, which one
third of respondents (12 of the 35 women who completed narratives) mentioned.
One woman described Loves 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 veried through other means, and this was one
reason that some women sought information online. In addition, nding one piece
of information sometimes provided the motivation to locate other information in a
different modality, in order to conrm 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, nding it overwhelming. One participant told us the Internet
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 399
created more questions than answers. Some women used the Internet only for specic
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 rst after they had been diagnosed.
Most women said that other women who have had breast cancer would be the best
meanssometimes the only meansfor 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 nd 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 couldnt nd anything useful. Womens views of
the Internetas well as information they found on itvaried 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 identied in relation to Internet based
information-seeking. Women who clearly were more experienced with the Internet
and comfortable online had less difculty 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 surng the Internet, although
a concern with books and print material was whether it would be current, since
new ndings 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 difcult 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
400 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
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
wasnt ready for that. Overall, however, face-to-face or talking with other women
rated highly as far as utility was concerned.
Outcome
Our nal analytic category, outcomemeaning what people did with the informa-
tionoverlapped 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 pre-
pared. One woman stated that as a result, I could have a meaningful discussion with
my oncologist following her research on chemotherapy. Another reected 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 ndings 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 identied in other cancer populations, information needs
were complex and changed over time (Rosmovitz & Ziebland, 2003).
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 401
Our analysis also revealed that the Internet is only one among many sources of
information for young women with breast cancer. This nding 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 fromseveral sources before believing it. Similarly, our ndings 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 nd 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 difcult to nd the information they are seeking online (Davis, Williams, Marin,
Parker & Glass, 2002).
Our ndings 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 ACTIONfor Health,
which found that 44 percent of respondents seeking a librarians 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 nd 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 nd what
they are looking for, but that they want comprehensive information and multiple
opinions. Little is known about where the Internet ts into the broader constellation
of health information resources and health information seeking trajectories (e.g.,
whether the Internet is the rst source of information and health information seekers
subsequently consult other information sources for clarication 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
402 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
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 identied 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 specic regimen (or
combination of regimens) for their specic type of breast cancer. Locating as much
information about treatment options that pertained to their specic 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 specic enough. Confusion and contradictory
information were problematic for women. Medical information was best delivered
by a surgeon or oncologistif the relationship was strong, which was not always
the case. Other information that our participants soughtvery broadly about living
with breast cancerincluding side effects of treatments, how to talk to family and
friends, how to cope, and how to make the best decisionwas best delivered by
another woman who had experienced a similar journey. This conrms a nding 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 specic 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
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 403
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 nd 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);
404 Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association
More attention should be paid to the individual information needs of women
even within this specic 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 ndings were consistent with
previous research which found different responses to, and preferences for the
amount and timing of information. Their ndings highlight the importance
of ensuring that means of information delivery are diverse enough to meet
individual needs.
Conclusion
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 specic 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
availableespecially through the Internetthe greater peoples expectations will be
that specic 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
Journal of Computer-Mediated Communication 15 (2010) 389411 2010 International Communication Association 405
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 nd. 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 lter 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.
Notes
1 Memorandum by GJW Government Relations Ltd, Health Affairs, http://www.
parliament.the-stationery-ofce.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 dened as
women who were diagnosed with breast cancer at age 45 or younger. It should however
be noted that there is no consistent denition 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.
3 Dissemination to cancer clinics across the province was possible because of our links
with partner organization the BC Cancer Agency.
4 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).
5 We recognize that there is no strict denition for alternative / complementary
therapies and that the denition may be shifting as treatments such as massage and
chiropractic are increasingly accepted by traditional health care practitionersbut we
had expected to hear more about a range of treatments apart from standard cancer
therapies.
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