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Constructing “Sense” From Evolving Health Information:

A Qualitative Investigation of Information Seeking and


Sense Making Across Sources

Shelagh K. Genuis
Centre for Health Promotion Studies, School of Public Health, University of Alberta, 3-094 Edmonton Clinic
Health Academy (ECHA), 11405 87 Avenue, University of Alberta, Edmonton, AB, Canada T6G 1C9. E-mail:
genuis@ualberta.ca

Focusing on information behavior in a context where Initiative (WHI) study had been prematurely halted due to
medical evidence is explicitly evolving (management of health concerns (Rossouw et al., 2002), the news reverber-
the menopause transition), this investigation explored
ated through medical and consumer communities and
how women interact with and make sense of uncertain
health information mediated by formal and informal was subsequently discussed and debated in hundreds of
sources. Based on interviews with 28 information articles and editorials (Naughton, Jones, & Shumaker,
seekers and 12 health professionals (HPs), findings 2005). Analysis of a stratified random sample of medical
demonstrate that participants accessed and valued a and consumer articles published before and after the
wide range of information sources, moved fluidly
release of WHI results raised questions about “how real
between formal and informal sources, and trust was
strengthened through interaction and referral between people access, use, and interpret information about contro-
sources. Participants were motivated to seek informa- versial or changing areas of medical practice” (Genuis,
tion to prepare for formal encounters with HPs, evaluate 2006, p. 983). These questions are widely relevant
and/or supplement information already gathered, estab- because, facilitated by rapid communication of research
lish that they were “normal,” understand and address
findings via the Internet and in the popular press, consum-
the physical embodiment of their experiences, and
prepare for future information needs. Findings revealed ers are confronted on a regular basis with new and evolv-
four strategies used to construct sense from health ing medical evidence (Consumer Reports, 2006). Consider,
information mediated by the many information sources for example, hopeful media coverage of a new cancer
encountered and accessed on an everyday basis: treatment (Woloshin, Schwartz, & Kramer, 2009), new
women assumed analytic and experiential “postures”;
findings and subsequent controversy about medical treat-
they valued social contexts for learning and knowledge
construction; information consistency was used as a ment for depressed children and adolescents (Bower,
heuristic representing accuracy and credibility; and an 2006), and contradictory media messages about the safety
important feature of sense making was source comple- of fish consumption (Vardeman & Aldoory, 2008). In light
mentarity. Implications for health information literacy of these and other findings and the fact that people access
and patient education are discussed.
a wide range of information sources within the context of
everyday health information seeking, this investigation was
Introduction guided by the question: How do people respond to, make
When the respected Journal of the American Medical sense of, and use (or not use) uncertain and/or evolving
Association published the news that the Women’s Health health information mediated by formal and informal infor-
mation sources? (Genuis, 2011).
Received December 21, 2011; revised March 2, 2012; accepted March 5, Although scholars within Library and Information
2012 Science (LIS) “point toward feelings of uncertainty, ambi-
© 2012 ASIS&T • Published online 29 June 2012 in Wiley Online Library guity, or uneasiness as the root cause of information
(wileyonlinelibrary.com). DOI: 10.1002/asi.22691 needs” (Case, 2007, p. 81), information behavior (IB) in

JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY, 63(8):1553–1566, 2012
situations where information is explicitly emergent and Arnett, 2004; Rigby, Ma, & Stafford, 2007; Sawka et al.,
provisional has received little attention. Dervin (1999) sug- 2004).
gests that humans struggle with incomplete understanding While studies have focused on health IB in situations
of reality. Through a process of sense making, people engage where there are complex information needs (Ariail, Watts,
in various IBs to bridge gaps in their understanding and & Bowen, 2006; Burrows, Malley, Nettleton, & Watt, 2004;
achieve an end product that comprises knowledge, opinion, Cappiello, Cunningham, Tish Knobf, & Erdos, 2007; Neal
intuition, evaluation, and affective response (Dervin 1992). & McKenzie, 2011), this study draws attention to a context
However, questions remain as to the strategies used to con- in which both consumers and HPs are aware that health
struct sense when information itself is uncertain. Because of evidence is emergent, incomplete, and provisional (Upshur,
this research gap within LIS, and because health care is an 2001). Not only were standards of practice related to meno-
area in which evidence-based decision making is a key pause management unexpectedly and dramatically rendered
concern, study of health IB within the context of uncertainty outdated by the WHI, but also uncertainty about translating
is timely. these new findings into practice persists (Holloway, 2010;
Focusing on IB in a situation where medical evidence is Wathen, 2006a). Furthermore, although practice guidelines
explicitly evolving—health management during the meno- suggest that HT for menopausal symptom relief is safe for
pause transition—facilitated exploration of how women up to five years (Pines, 2009), reputable sources contest the
interact with, integrate, and construct sense from uncertain safety of these guidelines (Heiss et al., 2008; National
health information. To gain insight into specific strategies Institutes of Health, 2008). Ongoing confusion about man-
used to make sense of health information in this context, aging this life transition has resulted in the view that HPs
deeper understanding of women’s experiences with and are not meeting women’s needs for information and guid-
motivations for seeking menopause information is critical. ance (Ma, Drieling, & Stafford, 2006) and women are
The following research questions are therefore addressed in turning to other information sources, including the media
this article: and the Internet (Archer, 2007). Uncertainty in this context
is, therefore, based not only on information complexity but
1. What are the experiences and motivations of women as also on the view that medical evidence represents “a tran-
they respond to, make sense of, and use uncertain and/or sient moment in an indeterminate process of stabilization
evolving information about hormone therapy (HT) and and destabilization” (Wood, Ferlie, & Fitzgerald, 1998, p.
menopause? 1730).
2. What strategies do women use to construct and make
sense of uncertain and/or evolving health information
mediated by formal and informal information sources? Women and Health Information Behavior
Women’s health is not only a major area of study within
All aspects of the study received ethics approval from the
health fields, women’s health IB has been identified as
Health Research Ethics Board (REB) and the Education,
a developing area of study within LIS (Case, 2007).
Extension, Augustana REB at the University of Alberta.
Research demonstrates that women are active information
Covenant Health Administrative Approval was also received
agents who gather, seek, and store health information for
for menopause clinic recruitment.
both themselves and others and who interact with an array
of information sources (for example, Macias, Lewis, &
Literature Review Shankar, 2004; Wathen & Harris, 2006). Women are
increasingly engaged in health IBs “either before, instead
A Case Study for Exploring Evolving and Uncertain
of, or unrelated to a visit to a doctor” (Warner & Procac-
Health Information
cino, 2004, p. 714). Moreover, valued sources of health
Precipitated by the unexpected 2002 publication of the information include not only HPs and health organizations
WHI (Rossouw et al., 2002) and its exhaustive coverage in but also informal sources such as books or magazines, the
the consumer and medical press (Genuis, 2006; Naughton Internet, and interpersonal relationships (for example,
et al., 2005), management of the menopause transition has Suter et al., 2007; Warner & Procaccino, 2004; Wyatt,
undergone dramatic and rapid change in recent years. Henwood, Hart, & Smith, 2005). Although figures within
Peterson and colleagues (2004) note, “rarely has one study individual studies vary, primary sources of information
had the impact that the Women’s Health Initiative trial has about menopause, the WHI, and HT include physicians,
had on the prescribing and use of HT” (p. 2010). Subse- the media, friends and family, and the Internet (Castelo-
quent to the WHI, for example, the majority of physicians Branco et al., 2006; Ekstrom, 2005; MacLennan, Taylor, &
radically modified their clinical approach to management Wilson, 2004; Theroux, 2005).
of this life transition, with menopausal prescription of HT Although some scholars suggest that people are seeking
declining significantly (Blumel et al., 2004; Buist et al., health information from informal sources because
2004; Hersh, Stefanick, & Stafford, 2004). This was physician-provided information is not meeting patients’
accompanied by widespread uncertainty about menopause information needs (Hoffmann, Lindh-Astrand, Ahlner,
management among women (Barber, Margolis, Luepker, & Hammar, & Kjellgren, 2005; Macias et al., 2004), other

1554 JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012
DOI: 10.1002/asi
factors also contribute to women’s reliance on informally • Because the term of hormone replacement therapy (HRT)
mediated health information. Online information seeking represents the view that postmenopausal women suffer from
has been transforming traditional models of health commu- a deficiency disease that requires remediation (Worcester &
nication (Fox, 2005), with women identified as one of the Whatley, 1992), this article uses the neutral term, hormone
therapy (HT). This term has come into widespread use
groups most likely to access online health information
since the 2002 publication of the WHI results and is applied
(Fox, 2005; Madden & Fox, 2006). Mass media have also
to a range of menopausal treatment regimens using exog-
had a dramatic influence on decision making for women enous hormones.
experiencing the menopause transition (Archer, 2007). • In this article, formal information sources include HPs,
Furthermore, sociocultural influences, such as the focus medical or professional associations, and established medical
on individual responsibility for physical well-being and institutions or consumer health associations. Informal sources
health-related decisions (Cangelosi & Markham, 1994), include personal contacts, the media, lay publications, and
play an important role in IBs and knowledge construction online sources. It should be noted that women also accessed
(Spink & Cole, 2006). Women now commonly include hybrid sources (Warner & Procaccino, 2004). The Internet,
aspects of nutrition, fitness, family relationships, and more for example, provided access to both formal (e.g., the Mayo
within the parameters of health and wellness (Fox, 2005; Clinic Web site) and informal (e.g., interactive discussion
lists) sources.
Macias et al., 2004; Wathen & Harris, 2006) with the inevi-
• Finally, the term participants is used to refer to the
table result that health information is drawn from a greater
primary study sample (women navigating the menopause
range of sources. transition). HP participants are identified as HP(s) or HP
With the rapid communication of new health information participant(s).
in public forums, women’s use of informal information
sources, and the emphasis on shared decision making in
health fields (American Medical Association [AMA], n.d.; Theoretical Framework
Canadian Medical Association [CMA], 2010; Légaré &
Based on a social constructionist approach and notions of
Brouillette, 2009; Salkovskis & Rees, 2004), nuanced
meaning making that incorporate an active, process-oriented
understanding of how women interact with and make sense
view of IB (Dervin, 1992), this study identified “general
of uncertain health information derived from both formal
sense-making practices on the basis of which people
and informal sources is critical.
orientate themselves in their everyday and working lives”
(Talja, Keso, & Pietilainen, 1999, p. 761). Interviews with
Research Methods participants were viewed as “reality-constructing, meaning-
Qualitative methods, which accept “people’s knowledge, making occasions” where meaning was “actively and com-
views, understandings, interpretations, experiences, and municatively assembled in the interview encounter”
interactions” as meaningful properties of the reality being (Holstein & Gubrium, 1995, p. 4). Additional theory was
researched (Mason, 2002, p. 63), were used to explore how incorporated during analysis to facilitate exploration and
women experienced and made sense of changing health contextualize emerging themes. Although not the focus of
information mediated by formal and informal sources. this article, social positioning theory (Davies & Harré, 1990)
Semistructured interviews were conducted with a sample of facilitated exploration of the dynamic aspects of information
women involved in IBs related to the menopause transition, encounters (Genuis, in press).
and with a smaller sample of health providers acting as
information providers for this population of women. The
Context
study focused on women’s experiences, IBs, and knowledge
construction. Interviews with HPs focused on themes The study was conducted in Canada, where there is pub-
emerging from interviews with the primary participants and licly funded health care. Although this might suggest greater
HPs’ perceptions of their roles as information providers. participant access to formal health information, comparisons
Selection of populations and sampling was theoretically between Canadians and insured Americans indicate that
informed. these populations are equally likely to report unmet health
needs (Blendon et al., 2004), with cost being a barrier in the
Definitions United States and wait times for care being a primary barrier
in Canada (Canadian Institute for Health Information,
The following definitions informed this study: 2006).

• The menopause transition refers to the stage of life which


incorporates perimenopause, menopause and, for those Sampling
women who continue to experience menopause symptoms,
postmenopause. Because investigation focused on women’s Sample 1: Women. Twenty-eight women who had been
experiences and perceptions, women who self-identified as or were engaged in information gathering and/or deci-
seeking information related to this life transition were sion making related to menopause management were
included in the study. interviewed. The goal of sampling was to gather rich

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DOI: 10.1002/asi
TABLE 1. Age of women participants (n = 28). TABLE 3. Health professional participants (n = 12): Summary of
demographics.
Age range Number of women
Gender Discipline Employment
40–44 years 2
45–49 years 6 10 – female 4 – Family physicians 5 – Community
50–54 years 7 2 – male 2 – Dieticians 5 – Menopause clinic
55–59 years 6 2 – Nurses 1 – Academic/community
60–64 years 4 2 – Pharmacists 1 – Retired
65–69 years 2 1 – Alternative health practitioner
70–74 years 1 1 – Specialist physician

TABLE 2. Self-reported menopause status. referral. Interviewed HPs included members of the North
Self-reported menopause
American Menopause Society, who were certified meno-
status Number of women pause practitioners (North American Menopause Society,
2011), practitioners focused on providing care for this
Post-menopause 17 population of women, and HPs with diverse practices
Perimenopause 8
Premenopause 1a
that included women in this life transition. The sample
Unsure 2b was purposive: both community and clinic practitioners,
as well as a range of disciplines, were represented (see
a
During preinterview e-mails this participant identified as entering Table 3).
menopause and described seeking menopause information; her interview
narrative suggested that she was likely premenopause.
b
Two participants stated that they were “unsure” of menopause status
Interview Approaches
because of HT’s impact on menses.
All participants took part in one, audio-recorded inter-
view that took place in a mutually agreeable location that
qualitative data from women with varying approaches to was amenable to recording (participants’ homes, places of
menopause management. Sampling was purposive: re- work, or public spaces). General strategies such as neutral
cruitment occurred in the community (n = 18) and at a agreement, asking for additional information, summarizing,
hospital-based, publicly funded menopause clinic (n = 10). and paraphrasing were used to encourage dialogue and
Participants also volunteered and/or were invited to give clarification (Schensul, Schensul, & LeCompte, 1999).
the investigator’s name to other interested parties. Partici- Interviews are viewed as sites for social construction and
pants lived in one Canadian province. Final sample size meaning making (Holstein & Gubrium, 1995). Within 24
was guided by theoretical saturation and sufficiency: hours of each interview, field notes were recorded. (Author
participants reflected a reasonable range of approaches may be contacted for interview guides.)
that might be found within the targeted population “so
that others outside the sample might have a chance Interviews with women. Interviews with women lasted 40
to connect to the experiences of those in it” (Seidel, 1998, to 80 minutes (mean, approximately 60 minutes). Two
pp. 47–48). interview strategies were used to yield rich descriptive
Interviewed women ranged from 43 to 72 years of age, data. A semistructured, narrative approach was primarily
with the majority (n = 19) being between 45 and 60 (see used, giving participants “scope to articulate their experi-
Table 1). Menopause status was based on self-report ences in their own terms” (Petersen, 2006, p. 34) and
(see Table 2). Three participants had immigrated to North facilitating constructive processes as participants related
America from other continents, and, based on census data, and explained their experiences (Becker, 1997; Petersen,
participants were better educated than average (E-Stat, 2006). “In the moment” elicitation (Johnson & Weller,
2006). 2002) was then used to elicit women’s emotive responses
to and tacit understanding of contrasting media-mediated
Sample 2: Health professionals. To strengthen findings health information. Chosen on the basis of national read-
derived from theoretically informed population selection ership data (Canadian Media Directors’ Council, 2007–
and sampling, data from primary interviews (women 2008) and with attention to readers’ age and gender, three
experiencing the menopause transition) were triangulated articles containing contrasting information about Vitamin
with data gathered from interviews with a smaller sample D and midlife women (CBC, 2007a, 2007b, 2008) were
(n = 12) of HPs (Creswell, 1998). These latter interviews sequentially presented to participants. Discussion focused
illuminated and confirmed themes arising from interviews on how women made sense of the articles and integrated
with women. HPs were recruited from two hospital-based media-sourced health information with other sources of
menopause clinics, through personal contacts and by health information.

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Interviews with health professionals. Semistructured inter- Results and Discussion
views with HPs (approximately 30 minutes in length) were
Women’s Experiences in Response to Uncertain and
initiated after 17 of the interviews with women were com-
Evolving Health Information
pleted. HP interviews focused on themes arising from
women’s interviews, on HPs’ views of women’s health IB, Women participating in this qualitative study engaged in
and on HPs’ roles as information providers. a range of IBs as they explored concerns about health and
wellness during the menopause transition. Data analyses
demonstrate that, for these participants, information seeking
was strongly associated with the experience of uncertainty.
Data Analysis
This was demonstrated by active information seeking, which
Interviews were transcribed verbatim and NVivo 8 incorporated a variety of formal and informal information
software facilitated data organization and identification sources and which was motivated by a range of factors and
of emerging themes and coding. Analysis incor- circumstances.
porated directed content analysis guided by theory (Hsieh
& Shannon, 2005) and grounded theory’s constant-
comparative method, interactive close reading, and exami- Uncertainty and information behaviors. Uncertainty
nation of texts for conformity and variation from emerging about menopause as a life stage and about menopause
themes (Glaser & Strauss, 1967). Descriptive, interpretive management in the absence of definitive research evidence
and discursive approaches to data analysis were utilized was integral to women’s IB. In response to uncertainties
and theoretical perspectives from a range of disciplines related to initial experiences attributed to this life transi-
were used to illuminate and develop themes emerging from tion, 13 of the interviewed women immediately engaged
analysis. in autonomous information seeking, “I really started
Analytic rigor was enhanced by a robust sample size reading up on it a lot” (Sue; pseudonyms used throughout);
(Kvale, 1996; Miles & Huberman, 1994) and triangulation, 10 consulted HPs, “I went straight to my doctor” (Thea);
which served to “corroborate, elaborate or illuminate and three sought information from interpersonal contacts,
the research in question” (Marshall & Rossman, 2006, “First of all I listened to what my sisters had went
p. 202). Three forms of triangulation were incorporated: through” (Dana). Twenty-six of the interviewed women
triangulation of interview approaches (narrative and consulted an HP at some point as they sought to make
elicitation) allowed in-depth exploration of women’s expe- sense of their menopause experience. All of the women
riences and sense making; data source triangulation noted that the Internet was an important source of
(women and HPs) facilitated confirmation and augmenta- health and menopause-related information. “Lived experi-
tion of themes; and theory triangulation (Patton, 1990) illu- ence” was also critical to interviewed women. This
minated analysis. Measures were also taken to strengthen was demonstrated not only by interaction with personal
credibility: identification and exploration of negative contacts, but also by information gathered via other
instances; debriefing with experts in the field and peers; mediums. Jill, for example, searched online for factual
and careful documentation at all stages of the research information about menopause, but she also noted: “Then I
process. went and scrolled down into some of the comments of the
people that lived through that. And to me, that’s a big
source right there too. Talk to people that lived through
that.”
Study Limitations
Not all of the interviewed women were familiar with
Findings are limited by the study context and popula- the WHI, but all were aware that the evidence base in this
tions sampled; however, ongoing uncertainty about meno- area of clinical care is evolving and contested. Anita, who
pause management suggests that this context was, for sought specific information about HT risk, exemplified the
women and HPs, representative of evolving health informa- frustration experienced as a result of the uncertain evi-
tion. Limitations are associated with sampling. Participa- dence base: “Problem is that the doctors never know. Most
tion may have had greater appeal for women experiencing of the time they have no idea.” Largely based on the view
health challenges and for those self-identifying as informa- that HPs could not offer definitive information about man-
tion seekers. HPs self-identifying as information providers aging this life transition, all of the interviewed women
may have been more likely to participate. Chosen methods described information gathering that incorporated multiple
pose limitations: Meaning was constructed from personal sources. Paula, for example, respected and liked her phy-
narratives and selected elicitation articles may have specifi- sician, but she explained that if he wanted to prescribe a
cally shaped participants’ responses. Finally, as noted medication, she would first seek information independently
earlier, research was conducted in a setting where health (via the Internet, library, and interpersonal sources) before
care is funded, which may limit generalizability in contexts making a decision about recommended treatments. And
where individuals are without or have limited health care Roslyn described consultation with many sources as she
coverage. searched for menopause information:

JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012 1557
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I had magazines, books, the Internet, listened to other people, spoke of gathering information for a period of time in
what they had gone through, what they’d tried to help them- excess of one year. For the two exceptions, one reported
selves at that point. And I borrowed a bunch of books from a discussing menopause-related issues at one medical
friend of mine who had also gone through menopause and had appointment after which other life circumstances assumed
a really tough time.
priority. In the second case, the participant actively inves-
tigated formal and informal resources; however, she deter-
These examples demonstrate that participants used mul- mined that she was not yet in this life transition and
tiple resources, moved fluidly between sources, and did therefore suspended information gathering.
not explicitly differentiate between formal and informal
information. Motivation for information seeking. Women’s IBs were
Women’s perception of sources as mutually enhancing motivated by a range of factors and circumstances. Partici-
was supported by the value participants placed on direct pants sought information in preparation for formal encoun-
or indirect referral between sources. The following ters with HPs, and they explored additional sources to
examples are representative: Lisa related that she tended evaluate and/or supplement information they had already
to read books recommended by trusted Web sites, and gathered. Women were also motivated to seek information to
Vicky emphasized the importance of health resources rec- establish that they were “normal,” and to understand and
ommended by trusted interpersonal contacts. Furthermore, address the physical embodiment of menopause, particularly
11 of the interviewed women noted that HPs pointed the symptom experience. Finally, they gathered information
them to supplemental health information. This was particu- for potential future use (see Table 4).
larly valued not only because it augmented HP-patient
information exchange, but also because women perceived
that information referral demonstrated that HPs recognized
the uncertain nature of menopause information and were TABLE 4. Motivation for information seeking.
open to information from other sources. Nicole was not In preparation for encounters with health professionals
alone in expressing increased trust in her physician • ‘It always worked for me, first of all, looking for information. . . .
because of this HP’s use of supplementary sources: “She Books. The Internet. So before I meet with the doctor I already know
provided actual print information. . . . So, I thought, ‘Okay. or have an idea about the things that are happening.” (Anita)
This is somebody I relate to, this is somebody I have • “Unless I’m in a great deal of pain, I don’t want to go to a doctor first.
I’d rather do my own reading so I get a little bit educated, or talk to
respect for. I think I want to head in this direction, at least some other people.” (Faye)
right now.’ ”
All of the interviewed HPs acknowledged the uncer- To evaluate, confirm, and/or supplement previously acquired
information
tainty associated with menopause management. HP Con- • “I was looking first for a confirmation of what [the doctor] had said.
nie’s comments were representative: “I think one of the Expansion of the information because she hadn’t given me or I hadn’t
main things we try and get across to women is that taken in thoroughly the information. Because I kind of went away and
hormone therapy isn’t—it’s not a recipe.” Although only said, ‘What about this?’ You know, and, ‘Why is this?’ ” (Christy)
some of the interviewed HPs shared secondary information • “That was the end of the appointment. And I was sort of standing
there. Okay, so at that point I went to the computer to look up [the
sources with women (e.g., HPs working in menopause diagnosis] to see what that was.” (Roslyn)
clinics provided prepared consumer health resource lists),
most acknowledged the value of referring women to To normalize experience
• “I guess I look up on the Internet to see if, ‘Oh yeah, it seems like
supplementary information, particularly to reputable online that’s normal for most people my age to go through something like
resources. HP participants working in the community, this.” (Laura)
however, felt less prepared for this activity. HPs Wanda • “I found I’d be talking to women, you know, peers, friends, relatives
and Clare, for example, cited their own knowledge [asking them], ‘Does this seem normal?’ ” (Dale)
deficit when explaining why they avoided referral to Inter- To understand physical embodiment of this life transition
net sources. This lack of engagement as information • “So I went to the library and looked [menopause] up and got whatever
providers may represent a lost opportunity: HP referral articles I could from the library and read [them] over. And decided that
to supplemental information sources is not only contingent I was having menopause symptoms, and what I needed to do was ask
my doctor to do the hormone testing thing so that he could see whether
on trust (Brown, Carroll, Boon, & Marmoreo, 2002), or not—what my body was producing. And that would tell him that I
but data from this study suggest that it may play a role was having menopause symptoms.” (Muriel)
in building trusting relationships between women and • “I feel that I was driven in trying to solve those symptoms, for sure.
HPs. [My symptoms] were really taking over my whole enjoyment factor in
It is important to note that although women’s meno- life.” (Thea)
pause experiences varied from relatively unremarkable To prepare for potential future information need
to life disrupting, their IBs were likely influenced by the • “I read everything that I can on everything [related to health]. . . . I
fact that menopause is common to all women, is usually guess I file it. I file it in my mind.” (Dana)
• When I see information in the Journal [newspaper] or the paper, I sort
experienced over a period of years, and generally involves of scan it and it sits somewhere.” (Naomi)
noncrisis health management. Twenty-six of the 28 women

1558 JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012
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Although 13 of the participants specifically stated that menopause experiences, five identified situations where
they gathered health information to prepare for formal they did not seek information because they believed that
encounters with HPs (primarily physicians), narratives indi- their experiences were not “normal”: “I don’t think that I
cated that most interviewed women gathered information recall having those conversations with other women about
prior to seeing an HP. Many participants went to HPs only it. In part, because there probably weren’t too many in that
after exhausting personal information-finding capabilities or general network who would have been in the same situa-
when access to a specific medical service was desired (e.g., tion as me” (Christy).
hormone level assessment). Interviews with HPs confirmed Although menopause is uneventful for many women,
this motivation. HPs, however, were likely to position them- interviews demonstrated that the desire to understand and
selves as interpreters of the health information women address the physical embodiment of this life transition
derived from other sources. powerfully motivated participants’ IB. Twenty-six of the
HP Denise commented, “They’ll come in with an interviewed women prominently situated the discussion
array of information and not know sometimes how to of symptoms within their menopause “stories,” with 20
interpret it or what to do with it.” HP Francis’s comments discussing symptoms within the first few sentences of
exemplified the view that HPs are arbitrators of health their narratives. Muriel’s and Thea’s statements (see
information: “[Women] talk and they argue and they say Table 4) illustrate the association between symptoms and
‘Well, can you find something else for me? Are you sure information need. Interviews with HPs confirmed this
that this is the best way?’. . . . I’d say to myself, ‘Why [is] association. HP Amy observed, “For the most part
the patient coming to see me if she already made up [women seen at the clinic have] been struggling with their
her mind that she is not going to listen to my advice?’” symptoms for a while, so they’ve often looked for
Francis’s frustration with women’s questions about pre- information.”
sented treatment options was, perhaps, grounded in notions Finally, similar to the “just in case” strategy that
of shared decision making, which are found in the medical women used for managing and physically storing health
literature: Information and treatment options are commu- information within their households (Moen & Brennan,
nicated to patients by HPs, who then help patients under- 2005), women were motivated to collect and mentally
stand the presented options and make treatment choices “file” health information to prepare for potential future
(Légaré & Brouillette, 2009). This contrasts with the need. This theme emerged from interviews with nine
perspective expressed by the majority of interviewed women and was supported by HP interviews. HP Sonya
women who positioned themselves as independent and related:
self-directed information seekers and decision makers
with respect to menopause management (Genuis, in That’s the other thing that’s amazing with health information
press). and women, they’ll read something and I think they rip it out
While all of the interviewed women consulted more and put it somewhere. Or a phone number or something. And
than one source for menopause information, 22 specifically then months later they’ll say, “Oh, I read that article.” And
noted that they looked for health information to evaluate they’ll follow up with it. . .. Or, even if we do an interview in the
and supplement previously acquired information. Women’s [newspaper], you’ll get calls even a year later saying, “I saw that
familiarity with menopause management uncertainty con- in the paper.”
tributed to their motivation to seek supplemental informa-
tion. Participants not only confirmed and supplemented Although information gathering has been noted as a
HP-provided information in other sources, they also sought means of improving self-efficacy prior to encounters
information from HPs to verify and supplement informa- with HPs (Wathen, 2006b), the nuanced purposes that
tion gathered via informal mediums. The Internet and emerged from the current data empowered participants
interpersonal contacts were primary sources for confirming as primary stakeholders in their health and wellness.
or supplementing information from HPs. Macias and colleagues (2004) observed that access to
Plunged into physical experiences that were commonly online health information gave women greater control over
unexpected, women were motivated to seek and gather their health and contributed to a changing balance in
information that confirmed that their experiences were women’s relationships with HPs. Although this may
“normal.” This provided women with significant comfort, threaten traditional authority structures within health care,
even before they took steps to alleviate distressful symp- increasing focus on patient-centered care and shared
toms. Scholars suggest that empowerment in health matters decision making (AMA, n.d.; CMA, 2010) suggests that
is symbolic of a healthier life (Ginman et al., 2003). In the patient information gathering should be viewed as a posi-
case of these participants, confirmation that their physical tive contribution to patient-HP relationships. Furthermore,
manifestations of this life transition fell within the range of participants’ strong motivation to gather information and
“normal” not only served to affirm the reality of their their appreciation for HPs who point them to secondary
experiences, but it was also empowering as it represented a information sources suggest an opportunity for HPs. By
first step toward problem resolution. While 10 women making high-quality, personally relevant information avail-
reported IB motivated by a need to normalize their able to women, HPs will facilitate individual responsibility

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for health and well-being and will foster positive TABLE 5. ‘Postures’: Approach and disposition when constructing sense.
HP-patient relationships.
Analytic posture: Illustrations
Camille: What I would do is build up a sleep debt after about
Constructing “Sense” From Formal and Informal three nights and then I’d take a sleeping pill. Because I didn’t want to
be doing that every night, right? So that’s what I would do, if I went
Health Information on without a good sleep for two, three nights, a third night I’d take a
Although women consulted many sources as they pill.
responded to uncertainties associated with menopause and Interviewer: Did someone tell you to do that or did you . . .
menopause management, they did not view sources in iso- Camille: No. That’s just what I thought. I mean, because I realize that if
lation from one another. Rather, they constructed knowledge I take a pill every night then I’m [going to] need one to get to sleep.
by integrating health information gathered from the wide So I would just kind of accrue this debt and then, poof.
range of sources that they encountered and sought. Monica’s Interviewer: Then how did you decide to do that?
approach was typical: “I’d go to various places. I’d go to the
Internet, I suppose. I would ask around. Talk to my doctor. Camille: I don’t know. I just did. I just thought about it and
thought, Well, that’s the part that makes the most sense. And my
And then, you know, pull [the information] together. I doctor said be careful to not – or he said, “Try not to take this more
wouldn’t go to just one source.” This draws attention to the than two or three times a week.” I mean, I had a friend who was
second research question: What strategies do women use to taking two a night. Every night. So, and I don’t like to take a lot of
construct and make sense of uncertain and/or evolving medication.
health information mediated by formal and informal infor- “On the Internet, I looked up gallbladders and hormone replacement
mation sources? therapy and what I did find is that hormone replacement therapy
Findings suggest that upheavals in conventional medical concentrates the bile. And I was not eating a lot of fat. So I thought,
knowledge increased women’s feelings of responsibility I’m going to start eating a tablespoon of peanut butter every
morning and see what happens. Sure enough. I haven’t had any of
not only for information seeking and decision making, but those symptoms again. Soon as I forget, it comes back.” (Sylvia)
also for making sense of uncertain and potentially conflict-
ing menopause information. While the notion of sense Experiential posture: Illustrations
“Menopause’s going to be what I experience, not from what I read
making is frequently a “given” within IB research, results from a book. . . . I’m not even going to give my mind a chance to
provide textured understanding of how participants con- even excuse certain behavior [because of] what I read.” (Jill)
structed sense from informally mediated and formally
“I think that’s probably one of the reasons I just turned off on the
mediated health information. Analysis revealed that women HRT stuff. There was just So. Much. Stuff. And, I was, as I said,
assumed analytic and/or experiential “postures,” sought satisfied with where I was going, with where my body was going.”
social contexts for learning and knowledge construction, (Nicole)
used information consistency as a heuristic for trustworthi- “It’s hard to explain [how I make sense of menopause information].
ness, and viewed information sources as complementary. My gut feeling; I listen to that. My instinct; I listen to that.” (Lisa)

Analytic and experiential “postures.” Interviewed women


made sense of uncertain health information by adopting
analytic and/or experiential approaches to menopause
information. This finding builds on the notion of two inter- information and then inductively extrapolated to manage
acting modes of information processing (Epstein, 1994). their menopause symptoms (see Table 5).
The psychological notion of mental processing, however, Women from this sample also adopted experiential pos-
does not incorporate comprehensive understanding of tures, which incorporated intuition and affect. This posture
IB as illuminated in LIS (Case, 2007; Fisher & Julien, is oriented toward “more rapid processing” (Slovic et al.,
2009; Wilson, 2000). Within the context of this explora- 2004, p. 313) and was demonstrated by women who drew
tion, therefore, the term posture (“a stance, an attitude”; attention to information that made sense according to their
“OED Online,” 2010) is used as it more accurately physical experiences and/or intrapersonal health knowl-
describes participants’ conscious and unconscious ap- edge (see Table 5). Ten of the interviewed women, for
proaches and dispositions as they made sense of health example, used words and phrases, such as “intuition,” “my
information. gut,” “instinct,” and “inner spirit,” which, upon closer
Analytic posture was demonstrated by the following: questioning, identified an intrapersonal and experientially
women focused on finding logical connections as they based knowledge source. For this sample of women, an
explored and gathered health information, they described experiential posture frequently served as a filter for infor-
actions which were based on conscious considerations and mation from other sources, thus influencing knowledge
linking of information from different sources, and they construction and decision making.
used different forms of evidence to justify information use Assumed postures were neither static nor mutually
(or nonuse). These characteristics, described in part by exclusive; both approaches facilitated sense making. This
Slovic et al. (2004) were exemplified by Camille and was exemplified by Christy, who assumed analytic and
Sylvia who made connections between different kinds of experiential postures during the course of her interview,

1560 JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012
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with each posture facilitating information integration. example, was one of seven participants who explicitly
When seeking to verify information heard from a friend, valued the learning that occurred between television show
for example, Christy adopted an analytic stance. She con- host Oprah and her audience. This participant highlighted
ducted an online search and found both “old wives’ tales” what she learned about menopause from this celebrity:
and citations to the medical literature. In light of her “You’re not alone. You’re not crazy. You can get help if
own knowledge, Christy then assessed the gathered infor- you want. You have different options.” HP Sonya also
mation and established a rational basis for adopting the noted the influence of mediated social contexts: “I think
information mediated by her interpersonal contact. When this whole sort of interest in bioidenticals is Oprah. One
this participant encountered information about the WHI, woman talking to another woman. Even though it’s an
however, she became concerned about what she was physi- audience of 30 million or whatever.” Participants’ reflec-
cally “feeling.” In this instance, Christy assumed an expe- tions suggest that interaction within social contexts consti-
riential posture and, without further information seeking or tuted more than information transfer; the process of
medical investigation, concluded that HT was causing interaction itself “construct[ed] and produce[d]” knowl-
undesired physical consequences. edge (Tuominen & Savolainen, 1997, p. 92).
Examination of analytic and experiential postures con- An unexpected finding was that 19 of the interviewed
tributes to understanding of health IB and sense making. women expressed explicit appreciation for learning and
It also has relevance for patient education. Consumer constructing knowledge in social contexts. Eleven of these
health resources have been “designed, almost exclusively, women specifically identified a preference for the learning
to evoke analytic processing” (Hibbard & Peters, 2003, that occurs in formally or informally organized groups.
p. 428). This study, however, illuminates the sense making (Only one interviewed woman belonged to such a group.)
functions of both analytic and experiential postures, thus When Paula, for example, was asked to envision an ideal
highlighting the importance of health information and way for women in this life transition to learn about health,
communication that provokes both cognitive and experien- she responded:
tial response (Dunlop, Wakefield, & Kashima, 2010).
Women’s health center . . . a place that women could share.
Social contexts. A second and prominent theme that Like, maybe there are menopause support groups. I don’t know,
emerged from the interviews was that social contexts play ‘cause I never went to one, but by women sharing with each
an important role for women as they construct sense from other and having that common thread . . . knowing that you’re
information about this life transition. At the same time as not alone. Whether it’s menopause, cholesterol, or whatever it
acknowledging a need for biomedical knowledge, inter- may be. I seriously believe that it’s important for women to
viewed women viewed research-based evidence as only share that information.
one part of decision making (this is also recognized in the Information consistency. Information consistency was
literature; for example, McCormack et al., 2002; Rycroft- used as a heuristic that represented information accuracy
Malone et al., 2002). Perhaps because of the universal and credibility. In other words, participants not only
nature of this life transition for women and existing uncer- were motivated to seek information that allowed them to
tainty about the evidence base for menopause manage- evaluate and supplement previously acquired information
ment, interactive contexts were viewed as empowering but also constructed knowledge by comparing and compil-
opportunities which facilitated sense making, integration of ing information across sources. Just as parallel evidence
formal and informal information, and effective manage- found in similar, but not identical, studies improves the
ment of personal health. For these participants, useable “strength” of evidence (Howick, Glasziou, & Aronson,
knowledge was, at least in part, “a communicative con- 2009), women viewed parallel information as enhancing
struct which [was] produced in a social context” (Tuom- the “strength” of a given conclusion or course of action.
inen & Savolainen, 1997, p. 89). While data analysis suggests that this heuristic was intrin-
Interviewed women found interactive contexts in a variety sic to most participants’ sense making, Muriel was repre-
of ways with the most apparent (noted by all interviewed sentative of the 10 women who explicitly drew on this
women except one) being that created by interpersonal infor- heuristic. She explained that she evaluated and made sense
mation sharing. Naomi’s comments were representative: of health information based on “cumulative information.”
This heuristic was highlighted by those noting multiple
We do talk about [menopause] at work, and we do have those
occurrences of similar information within a single type of
conversations, and people have come up with different solu-
tions and other people have tried them. Or they recommend source and by those who looked for similar information
one product over another product and I think that that is very, across sources (see Table 6). Use was particularly promi-
very helpful for everybody. . . . Sometimes you have to talk nent among women seeking online health information. It
quite a bit about it before you can wrap your head around was, however, also used by participants making sense of
certain things. information from interpersonal sources and those integrat-
ing information from formal and informal sources. At the
Social contexts were also experienced within online same time as information consistency suggested informa-
environments and, notably, via the media. Anita, for tion sufficiency and was therefore viewed as a reasonable

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TABLE 6. Information consistency as a heuristic for accuracy and (Dutta-Bergman, 2004), suggests that enduring interest in
credibility. a specific subject area motivates IBs across media, with
Multiple instances of similar information within a source diverse sources fulfilling individuals’ information needs in
“I will look at a variety of sites. So I will look at – you know university complementary ways. Data from the current study suggest
based sites, or Mayo clinic sites, things such as that. And look at them that complementarity theory offers nuanced and unique
with a great deal of care and try and see if all of them are in insight into the sense making of participants.
agreement. Because sometimes they aren’t. Sometimes their
information is somewhat different. Or sometimes it’s the same
Complementarity was demonstrated in a number of
information but there’s a slight twist in the interpretation.” (Nicole) ways: interviewed women moved fluidly between a range of
sources; they valued sources which directly or indirectly
“There’s two verifications right there [confirmation from two people that
an over-the-counter product provided symptom relief] and I’m the
pointed to other information sources; participants described
third because I did it and it worked. That’s pretty good. Pretty – then I seamless integration of online and offline information
can trust that.” (Lisa) seeking; and they viewed media-mediated health informa-
Similar information across sources
tion as a valuable awareness tool and “springboard” for
“I go to the library, I look at self-help books. I go to [name removed] information seeking via other mediums. Given the novel
Bookstore, I get lay people books as well as Mayo Clinic or application of this theory, a specific illustration of comple-
professional journal articles. And I talk to friends. And then I figure mentarity as demonstrated in this study follows.
out where things are overlapping and what makes sense. . . . [I] read Most interviewed HPs expressed concerns about the
really broadly until I figure out, until I started to see overlaps of
information. And then I can start saying, ‘Okay, here’s the reliable
competing influence of media-sourced health information,
stuff and here’s just the stuff that everybody’s saying.’ ” (Faye) with three quarters specifically noting the influence
of Oprah. Women’s reactions to Oprah’s discussions of
“I try and definitely cover more than one source so I can compare
information as well. One might contradict another; [then I] try and find
menopause management (Kosova, 2009), however, provide
another to see what they say.” (Dale) a compelling illustration of complementarity. While HP
Gail positioned the North American Menopause Society
and Oprah as conflicting information sources, Sue and
Camille explicitly valued information from both Oprah and
basis for decision making, information inconsistency a menopause clinic guided by North American Menopause
proved to be an impetus for ongoing information seeking. Society standards. Camille, furthermore, highlighted a rela-
Interviewed HPs confirmed that consistency facilitated tionship between Oprah’s television show and interper-
information use and decision making. HP Amy observed: sonal information gathering among women: “It kind of
opened up the dialogue and stuff. Because we’d say, ‘Oh,
What we have found on many occasions is that it’s helpful for did you see that Oprah?’” HP Amy provided support for
the patient to hear a message from more than one [HP], and that complementarity between the Oprah show and other infor-
it takes hearing it from more than one person before [women] mation sources: “I guess the good thing is that it does get
kind of, you know, decide, “Oh, okay, here’s what’s happening the conversations started, you know. Like certainly more
and it probably would be beneficial.” women are coming forward and looking for help.”
Complementarity was further illuminated by a HP working
Furthermore, this theme is supported in the literature. in a menopause clinic:
Brashers (2001) notes that although information reduces
uncertainty, “correct” information is not required, only I can’t believe the influx of calls we’ve had from that Oprah
perceptions of coherence. In addition, Lankes (2008), in an show. I really can’t. We’ve over 200 women waiting to see us
exploration of online information seekers’ understanding of now . . . whereas before our wait list, before the Oprah show,
credibility, highlights a shift from traditional “authority”- . . . we were down to about, you know, maybe 40 or 50 at our
based credibility to a “reliability” approach where peak times of people waiting. Now we have over 200 women
cohesion and consistency is sought among sources. For waiting to be seen.
interviewed women, source consistency was a prominent
heuristic that facilitated the construction of uncertain While interviewed HPs were unenthusiastic about Oprah
health information as credible, and thus as a basis for as a purveyor of health information, these observations
information use. clearly illustrated complementarity: Many women who
gathered health information from Oprah were also motivated
Source complementarity. Health information sources are to seek information about menopause from formal sources.
frequently conceptualized as being in competition for Findings from this study are both supported by and
the limited time or allegiance of the information seeker/ extend previous considerations of complementarity. First
patient. Interviewed women, however, tended to seek and established as a feature of news consumption across tradi-
monitor menopause information across media. This sug- tional and new media (Dutta-Bergman, 2004), complemen-
gests that a predominant feature of participants’ IB was tarity has been established between modes of interpersonal
complementarity, not competition or displacement. This crisis communication (Dutta-Bergman, 2006), and between
construct, first elucidated as media complementarity theory mass media and visits to HPs (Tian & Robinson, 2008).

1562 JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012
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Whereas published literature on this topic appears to be information as a provisional construct and sense making in
limited to secondary analysis of quantitative data (Dutta- the context of evolving health information. Future research
Bergman, 2004; Nguyen & Western, 2006; Tian & Robin- should engage with the notion of health information as
son, 2008), results from this study provide insight into the emergent and provisional and explore how other popula-
way women experience complementarity and illuminate its tions respond to and construct knowledge from uncertain
constructive role as women make sense of uncertain health health information. Exploration of how HPs themselves
information. experience, make sense of, and then communicate provi-
sional and evolving health information will also make an
important contribution to the study of IB and patient-HP
Implications
communication.
The current emphasis on patient-centered care and Furthermore, despite the acceptance of sense making as
shared decision making (AMA, n.d.; CMA, 2010) has an intrinsic component of IB, greater understanding of the
brought focus to the critical role of patient education and specific strategies people use as they bridge information
health information literacy. While research and practice gaps will contribute to a nuanced understanding of sense
have primarily focused on facilitating consumer/patient use making. Four sense-making strategies emerged from this
of empirically derived authoritative resources, this study qualitative study. These constructs hold promise for illumi-
draws attention to women’s perspectives and demonstrates nating further the multifaceted information worlds that
that it was the interaction between and integration of both women inhabit. Investigation of these constructs in other
formal and informal health information which met partici- populations will add both theoretically and practically to
pants’ information needs and enabled sense making. This is understanding of health-related IB. Exploration of how
a challenging proposition as health and information profes- patient education and health information literacy instruction
sionals tend to be leery of informal health information, par- can be informed by participants’ sense-making strategies is
ticularly experiential knowledge, knowledge constructed in also warranted.
social contexts, and media-provided or Internet-mediated
information.
Conclusion
Findings suggest that this dilemma can be addressed.
Deeper understanding of what motivates information With the rapid communication of health knowledge via
seeking and the strategies women employ when making the Internet and media, consumers are being informed on a
sense of uncertain health information will allow researchers regular basis of new and changing medical evidence and
and professionals to develop effective patient education reliance on both formal and informal information sources
practices that incorporate the range of sources that women has become an everyday reality. Information needs are
actually use when making decisions about health manage- deeply contextual and to understand health IB, researchers
ment. Instead of ignoring or vilifying nontraditional sources, and professionals need to understand how people engage
discussion of health information derived from all sources with evolving health information, the specific needs which
should be encouraged to better understand consumers’ con- motivate information seeking, and the strategies people use
texts and needs, illuminate the ways in which different to make sense of the vast amount of formal and informal
sources address the diverse needs of individuals, and facili- health information incidentally encountered and deliberated
tate sense making. sought.
This study also illustrates the ways in which theory can This study focused on women’s experiences and sense
illuminate understanding of complex, real-world situations. making when navigating evolving and uncertain menopause
Although the notion of sense making is well established information. Interviews with HPs were used to triangulate
within LIS, analysis of interview data provided nuanced and confirm emerging themes. Findings demonstrated that
insight into the different strategies participants used as they women were motivated to seek information to (a) prepare
constructed knowledge. Use of theoretical perspectives for formal encounters with HPs; (b) evaluate, confirm,
drawn from other disciplines validated and extended and/or supplement information they had already gathered;
research findings by rooting themes in previous research and (c) establish that their experiences with this life transition
demonstrating “theoretical elaboration in new contexts” were “normal”; (d) understand and address the physical
(Vardeman & Aldorry, 2008, p. 286). embodiment of menopause, particularly the symptom expe-
rience; and (e) prepare for potential future information
needs. Because women did not perceive that HPs could
Future Research Directions
offer definitive information about managing this life transi-
Health information is not only inherently provisional tion, interviewed women felt responsible for not only
and emergent, but there is always a measure of uncertainty seeking but also making sense of encountered and gathered
as population-based findings are applied within individual information.
contexts. This study, an exploration of how one population Analysis of interview data revealed four primary
experienced and made sense of uncertain health informa- strategies that women utilized to construct sense from uncer-
tion, represents a first step in the investigation of health tain and evolving health information: (a) women assumed

JOURNAL OF THE AMERICAN SOCIETY FOR INFORMATION SCIENCE AND TECHNOLOGY—August 2012 1563
DOI: 10.1002/asi
analytic and experiential “postures” as they assessed and Buist, D.S., Newton, K.M., Miglioretti, D.L., Beverly, K., Connelly, M.T.,
integrated information from different sources; (b) they Andrade, S., . . . Kessler, L. (2004). Hormone therapy prescribing
patterns in the United States. Obstetrics & Gynecology, 104, 1042–
explicitly valued social contexts for learning and knowledge 1050.
construction; (c) information consistency was used as a heu- Burrows, R., Malley, L., Nettleton, S., & Watt, I. (2004). Health e-types?
ristic which represented information accuracy and served An analysis of the everyday use of the Internet for health. Information,
as a basis for information use; and (d) whereas HPs tended Communication & Society, 7(4), 531–553.
to view formal and informal information as competing Canadian Institute for Health Information. (2006). Waiting for health
care in Canada. Ottawa, Ontario: Canadian Institute for Health
influences, findings provide support for complementarity Information. Retrieved from http://secure.cihi.ca/cihiweb/products/
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sources as mutually enhancing. Although each of these Canadian Media Directors’ Council. (2007–2008). Media digest. Toronto:
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Sincere gratitude to Dr. Heidi Julien and Dr. Brenda Case, D.O. (2007). Looking for information: Survey of research on
Cameron for their valuable guidance and encouragement, to information seeking, needs, and behavior (2nd ed.). San Diego, CA:
the women and health professionals who so generously Academic Press.
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