What Is the Impact of the Internet on

Transcription

What Is the Impact of the Internet on
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BIRTH 38:4 December 2011
What Is the Impact of the Internet on
Decision-Making in Pregnancy? A Global Study
Briege M. Lagan, PhD, RM, Marlene Sinclair, PhD, RM, and W. George Kernohan, BSc, PhD
ABSTRACT: Background: Women need access to evidence-based information to make
informed choices in pregnancy. A search for health information is one of the major reasons that
people worldwide access the Internet. Recent years have witnessed an increase in Internet
usage by women seeking pregnancy-related information. The aim of this study was to build on
previous quantitative studies to explore women’s experiences and perceptions of using the Internet for retrieving pregnancy-related information, and its influence on their decision-making
processes. Methods: This global study drew on the interpretive qualitative traditions together
with a theoretical model on information seeking, adapted to understand Internet use in pregnancy and its role in relation to decision-making. Thirteen asynchronous online focus groups
across five countries were conducted with 92 women who had accessed the Internet for pregnancy-related information over a 3-month period. Data were readily transferred and analyzed
deductively. Results: The overall analysis indicates that the Internet is having a visible impact
on women’s decision making in regards to all aspects of their pregnancy. The key emergent
theme was the great need for information. Four broad themes also emerged: ‘‘validate information,’’ ‘‘empowerment,’’ ‘‘share experiences,’’ and ‘‘assisted decision-making.’’ Women also
reported how the Internet provided support, its negative and positive aspects, and as a source
of accurate, timely information. Conclusion: Health professionals have a responsibility to
acknowledge that women access the Internet for support and pregnancy-related information to
assist in their decision-making. Health professionals must learn to work in partnership with
women to guide them toward evidence-based websites and be prepared to discuss the ensuing
information. (BIRTH 38:4 December 2011)
Key words: decision-making, information seeking, Internet, online focus groups, pregnant
women
The ethical need for health professionals to respect
autonomy and respond to consumer demands has
resulted in extensive international interest to understand health care decision-making and strengthen
‘‘shared’’ decision-making within policy and practice
developments (1–3). Decision-making is an integral
component of maternity care and is supported globally
by recommendations that reinforce the importance of
informed choice for pregnant women (4–6). To make
informed choices, women need access to evidencebased information. The Internet has the potential to
offer consumers of health care an extensive mechanism and resource for information. Recent data indicate that the growth rate for Internet use in the past
decade has increased by almost 500 percent, and 30
percent of the world’s population now has online network access (7). With almost 136 million websites
currently disseminating pregnancy-related information,
online usage by pregnant women is growing rapidly
(8–10).
A review of the literature demonstrated limited evidence exploring pregnant women’s use of the Internet as
Briege M. Lagan is a Research Fellow, Marlene Sinclair is a Professor
of Midwifery Research, and W. George Kernohan is a Professor of
Health Research at the Institute of Nursing Research, University of
Ulster, Jordanstown, United Kingdom.
Address correspondence to Dr. Briege M. Lagan, PhD, RM, 11 Inishowen Park, Portstewart, County Londonderry BT55 7BQ, UK.
This study was supported by a postgraduate studentship award
from the Department for Employment and Learning, Belfast, United
Kingdom.
Accepted March 7, 2011
2011, Copyright the Authors
Journal compilation 2011, Wiley Periodicals, Inc.
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a source for health information (11). Findings were
found within the text of papers investigating other
issues, with the Internet only peripherally mentioned.
The ability to seek and exchange Internet information
depends both on having access to the medium and also
necessary technical skills. It also calls for basic competence in being able to choose, classify, and critically
evaluate the information that emerges.
Information seeking is described as a holistic learning process to seek meaning (12). For health care
practitioners and policy-makers to be able to identify
and thus address the information needs of pregnant
women, their dependence on the process and their
experience within it must be clearly understood.
This study builds on previous quantitative studies
(10,13) that investigated pregnant women’s use of the Internet in pregnancy and the Internet’s effect on decisionmaking. Although quantified evidence can be powerful,
it can fail to reveal understanding behind experiences.
This study drew on the interpretive traditions within qualitative research to explore in-depth women’s experiences
and perceptions of using the Internet for retrieval of
pregnancy-related information, and the influence this
medium had on their decision-making processes.
Methods
The conceptual design was underpinned by a theoretical
model of information seeking adapted for the study.
Kuhlthau’s (12) information-seeking process was modified to include work conducted by Kalbach (14) on
seeking information on the Internet, and to integrate
‘‘decision-making’’ into the framework.
Setting and Sampling
As Lehoux et al pointed out, focus groups should be
conceptualized as social spaces in which participants coconstruct the ‘‘patient’s view’’ by acquiring, sharing,
and contesting knowledge (15). As a result of the diverse
global location of the participants and the topic of study
(i.e., ‘‘Internet users’’), it was considered that online
would be the most appropriate setting for data collection. Turney and Pocknee also advised using virtual
focus groups whenever the populations are difficult to
recruit or access (16).
The method of using moderated asynchronous online
focus groups was chosen instead of the synchronous version primarily because managing the logistics of scheduling and time zones for both researcher and participants
can be problematic. In addition, synchronous discussion
requires participants to have higher levels of computer
literacy (17). Asynchronous communication allowed the
geographically separated participants to join the discussion at a time convenient to each.
Participants were drawn from a population of 193
women who had participated in a web-based survey,
used the Internet as a medium for information in pregnancy, and expressed a willingness to engage in an
online focus group. Demographic details from a previous survey were used to stratify the focus groups by
country of residence (13) (Table 1).
Data Collection
Thirteen asynchronous online focus group discussions
across five countries were conducted over a 3-month
Table 1. Composition of Focus Groups According to Country, Number Expressed Interest and Invited, Number
Responded, and Number Participated
Focus Group
Australia 1
Australia 2
Australia 3
Australia 4
Canada
New Zealand 1
New Zealand 2
United Kingdom 1
United Kingdom 2
United Kingdom 3
United Kingdom 4
United States 1
United States 2
Total
No. of Participants Expressed
Interest and Invited
No. Responded
to Invitation
No. of Participants
in Each Focus Group
15
15
15
15
15
14
14
15
15
15
15
15
15
193
5
10
9
7
7
4
7
10
7
8
8
8
11
108
5
9
6
7
7
4
7
9
7
7
7
6
11
92
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period. The lead researcher (B. M. Lagan) e-mailed
interested participants and set up individual listserve
accounts for each of the focus groups, using an Internet
service provider. Measures were taken to control access
and protect anonymity. The groups were moderated by
the researcher (B. M. Lagan), an experienced midwife
trained in conducting asynchronous communication.
According to Madge, actually seeing someone’s face
can give participants a sense of reassurance (18). In an
effort to develop rapport and a trusting relationship with
the prospective participants, each group’s home page
contained a brief profile of the researcher’s qualifications, her photo, the purpose of the study, and the name
of the institution conducting it. Before data collection,
the invited participants were provided with detailed
instructions on how to access and interact in the online
discussion forum and how to unsubscribe from the group
if they wished to do so.
Focus Group Guide
The structure of the focus group guide was designed
around the theoretical framework and the findings from
two previous surveys on Internet use in pregnancy
(10,13). Key areas of discussion included: what was the
need to search the Internet; why it was used as an information source; how information was retrieved,
appraised, and used; and whether it influenced women’s
decisions about how their pregnancy should be managed. Within this loose framework, questioning was
unstructured and open ended, which allowed the respondents to answer from a variety of viewpoints.
Pilot Study
A pilot study was undertaken before the main study to
evaluate the interview guide and test the feasibility and
effectiveness of using an online medium for qualitative
data collection and to verify that the system worked in
the actual user environment. After the pilot study, minor
modifications were made to the focus group discussion
guide. No technical issues were identified.
Ethical Considerations
Potential benefits of the study were deemed to outweigh
any risks or inconveniences. Ethics applications were
submitted to, and approval granted through, arrangements for research governance at the University of Ulster
and the Office for Research Ethics Committees in Northern Ireland. All potential respondents were provided with
a focus group protocol and participant information sheet
containing detailed information about the study. A positive response to the e-mail invitation to participate in an
online focus group discussion constituted consent. All
participants were advised that they could withdraw from
the study at any time. Participation by ‘‘invite only’’
allowed the moderator to retain control of who had access
and could contribute to the group. To protect participant’s identity and confidentiality, all data went through
a de-identification process. Any participant who contributed to the discussion needed only to identify herself to
the group by a username of her choice; thus, the participant could retain control over protecting her identity. To
further preserve anonymity, pseudonyms have been used
in the data presented in this paper.
Data Analysis
All text from each online focus group discussion was
made anonymous, copied, and pasted verbatim into the
qualitative data management tool, NVivo 7 (19). Analysis and data collection were conducted concurrently,
commencing as soon as the first posting was entered
using Ritchie and Spencer’s five-stage framework (20).
Initially the lead researcher (B. M. Lagan) worked with
the transcripts deductively, using the elements of the theoretical framework as a priori themes. She then worked
more inductively with the data to identify comments on
other didactic themes relating to women’s experiences
and views on use of the Internet as an information source
in pregnancy and the effect it had on their decisions
about how their pregnancy should be managed.
M. Sinclair and W. G. Kernohan read a subset of the
texts to check the credibility and trustworthiness of the
developing analysis. Feedback from the participants on
the accuracy of the identified categories and themes was
also sought. Some comments were selected to represent
the breadth and depth of themes, and are reported verbatim.
Results
Quantitative data are reported in the first instance to provide a sense of the overall demographic profile of the
focus groups. Of 193 women who initially expressed an
interest to participate, 108 (56%) responded to the
e-mail invitation, and of these 92 participated in a focus
group. The average number of participants for each
group was 7, ranging from 4 to 11 (Table 1). Table 2
presents the demographic profile of the participants,
pregnancy data, and types of antenatal care.
The central theme identified was a ‘‘need’’ for information, with four broad themes emerging repeatedly
from the focus groups: ‘‘validate information,’’
‘‘empowerment,’’ ‘‘share experiences,’’ and ‘‘assisted
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Table 2. Demographic Profile of Online Focus Group
Participants (n = 92)
Characteristics
Mean (SD)
Range
29.9 (4.88)
19–39
Age (yr)
Mean (SD)
Marital status
Married
Single but in steady relationship
Divorced
Highest level of education completed
Grammar ⁄ secondary ⁄ high school
Technical college ⁄ diploma
Undergraduate degree
(Associate or Bachelors)
Postgraduate degree
Pregnancy status
Pregnant
Postnatal
First pregnancy
Yes
No
Pregnancy complications
Yes
No
Type of antenatal care
Midwife only
Obstetric consultant only
General Practitioner only
Shared care*
No antenatal care
Internet access at home
Yes
No
Formal Internet training
Yes
No
Perception of Internet skills
Expert
Nonexpert
80 (87.0)
11 (12.0)
1 (1.1)
19 (20.7)
19 (20.7)
35 (38.0)
Health professionals often don’t have the time or inclination to
explain things in the detail you would like. (Leah, Australia)
When women met with their doctor or midwife (less
frequently than they would have liked), they viewed
them as ‘‘busy people.’’ Some women described their
appointments being ‘‘tick box’’ exercises for their health
professionals ‘‘filling out irrelevant and outdated statistics on the maternity notes … rather than chatting about
their pregnancy.’’ Others did not want to ‘‘bother’’ their
health professionals unnecessarily:
I felt my questions were too ‘‘small’’ for the doctor to answer,
and just needed a little info, and felt there was no reason to
bother her. (Noelle, Canada)
19 (20.7)
34 (37.0)
58 (63.0)
53 (57.6)
39 (42.4)
38 (41.3)
54 (58.7)
23 (25.0)
21 (22.8)
3 (3.3)
44 (47.8)
1 (1.1)
89 (96.7)
3 (3.3)
27 (29.3)
65 (70.7)
The infrequency of antenatal visits and time constraints at appointments appeared to have an influence
on Internet use to meet information needs between
appointments:
Face-to-face contact — for most of my pregnancy this was only
once every 4 to 5 weeks, so wasn’t really enough to satisfy all
my questions. (Alexis, Australia)
Between appointments the Internet helped to provide
support and reassurance:
Appointments these days seem very few and far between (every
6 weeks, right up to 36 weeks), and I often have concerns and
queries in the meantime which can be found out about, and
often resolved, using the Internet. Even with such a fab midwife, though, appointments are often very short, and although
for her pregnancy is a completely everyday matter, for us
expectant mothers it is a huge and important part of our lives
for 40 weeks. (Kerry, UK)
57 (62.0)
35 (38.0)
Identifying the Internet as an Information Source
*Antenatal care shared between a midwife and general practitioner
(GP); or midwife and consultant obstetrician; or GP and consultant
obstetrician; or midwife, GP, and consultant obstetrician.
decision-making.’’ Within each of these themes, several
subthemes were identified, many of which were interrelated and overlapping (Fig. 1). The themes were common to all the focus groups. The findings are presented
under the headings of the theoretical framework and the
master themes.
For all the women the Internet was already a familiar
source for information, and many wrote about how they
‘‘use the Internet to search for everything,’’ ‘‘always
known it as a source for all types of information.’’ Some
used it for work, entertainment, wedding planning,
studying, shopping, ‘‘… so why wouldn’t I think of using
it for pregnancy information?’’ One woman described
how her doctor referred her to specific websites:
Information Need
He knows that I like to research things on my own before making decisions so he has told me to use the Internet and gave me
specific web pages to look up. (Helen, Canada)
Most women attributed their motivation to search for
online information because health professionals did not
provide enough information to meet their needs:
Considerable discussion ensued about the appealing and distinct characteristics the Internet has to
offer. Anonymity was a major attribute of online
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Internet
use in
Pregnancy
Knowledge
Validate
Information
Choice
Empowerment
INFORMATION
NEED
Anonymity
Share
Experiences
Control
Assisted
Decision-Making
Social
Support
Clarity
Reassurance
Satisfaction
Interactivity
Fig. 1. Main themes and subthemes related to online information seeking drawn from focus groups.
communication, and was particularly important when
women wanted confidential advice, to be free to ask
questions, and receive support without fear of identification and judgment:
Books go out of date quickly. I found the Internet had different
perspectives to offer and more current information. (Jeannie,
USA)
Retrieving Information from the Internet
I didn’t want to announce the pregnancy to my family until
after 12 weeks, so in the early weeks it was great to anonymously get replies to ‘‘stupid questions’’ which you couldn’t
ask others in real life. (Louise, Australia)
I also found the anonymity good, especially when I was looking
for the answer to a question that I felt ‘too silly’ to ask my
midwife. (Jennie, UK)
Flexible Internet access was highly valued and the
ability to go online at any time and anywhere was
perceived as a benefit:
The Internet is fast and immediate. I didn’t have to wait until
office hours or until someone returned my phone call. I didn’t
have to go to a library or bookstore. I could look up information
while at work or at home, anytime. (Laura, USA)
When compared with other information sources, the
Internet had several advantages for these respondents.
They criticized books for being expensive, difficult to
search, having a one-sided and limited view, and going
out of date very quickly. Magazines and leaflets were
also criticized for providing limited detail. Overall, they
reviewed the Internet as a valuable source for information and described it as a ‘‘font of all knowledge’’:
Women used different strategies to retrieve online
information, but in the main they commenced their
search by entering key words into a search engine
such as Google. A desire to critically evaluate a diagnosis or a problem helped focus their search. Many
preferred sites supported by health authorities or wellknown medical or academic institutions. Most women
recognized the need to distinguish among practices
available in different countries. They used more
advanced search techniques, such as focusing on their
country of residence. Phrases, quotation marks, and
extra words helped to narrow their searches. They
articulated an understanding of how these techniques
helped to focus their search to provide ‘‘authentic’’
choices:
I used Google first of all … limiting my search to NZ pages.
I read through the summaries of the first few hits and chose the
first commercial site because I knew that would give me a
quick and basic overview, rather than an overly scientific one.
(Chaucey, New Zealand)
Numerous participants shared alternative search strategies, which included going directly to websites advertised in an information leaflet they had been given or by
starting a ‘‘thread’’ on the topic on a discussion forum:
When I was a kid, my parents were big ‘investors’ in encyclopaedias … Google is the encyclopaedia of this century. The
Internet contains so much information that can be accessed
in seconds. (Infinity, Australia)
I would visit open discussion forums that were debating the
issue or, begin a thread myself and ask for the opinion of others.
(Angie, UK)
The magazines all seemed to say the same thing … My health
professional had only one opinion and appointments are short.
Participants reported that when they found websites
they liked, they would often ‘‘bookmark the site’’ or
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‘‘add to my favorites’’ so that they could return to it at a
later date. When the women were asked how they knew
they had actually found what they were looking for,
most reported that they stopped searching when they
found the desired information repeated on a number of
sites. Some had to find at least three articles to confirm
and support the findings. Several stopped searching
when they felt ‘‘satisfaction’’:
I wanted to make sure what I was experiencing, was not unique
to me, that other women had experienced the same thing. (Noelle, Canada)
Stopping searching for me was often more to do with being
satisfied that I had learned all I could on the topic (a bit like
knowing when you’re full at the dinner table). (Tania, New
Zealand)
Appraising Information from the Internet
I would stop searching when I thought that I had enough
information to make an informed decision ⁄ opinion. (Susan,
Australia)
For others, the search was ongoing:
I searched for things right up until the day I went into labour!
I found that throughout my pregnancy I could always find information (either based on personal experiences of others) or factual information relevant to the stage I was at. Now I have had
my baby, I still use the Internet a lot for gathering information
and experiences. (Elizabeth, UK)
Using the Internet to Share Experiences
The recent advances in web-based systems for social
networking and logging experiences create communities in which online users with common interests
gather ‘‘virtually’’ to share experiences, ask questions, or provide emotional support and self-help.
The women in this study discussed the benefits of
network connectivity. They used online discussion
forums to gain support from other pregnant women
or mothers, which in some instances was in the context of social isolation:
My ‘real-life’ friends didn’t have any experience of pregnancy,
so the Internet forums I visited provided me with ‘friends’ who
had been through it before, or were going through the same
experiences as myself. (Nicky, UK)
Many wrote that online communities offered them
the opportunity to share experiences. By connecting
with other women, they were able to get a more
realistic picture of what was ‘‘normal’’ and felt reassured when they were able to confirm that the symptoms they were experiencing were typical of
pregnancy.
The big advantage getting health information from the Internet
is that you have ready access to women who have experienced
pregnancy and the range of complications, not just health
professionals who have studied them. (Kristin, Australia)
Having identified online information sources, it was necessary to explore how the information was appraised.
Women used an interesting range of validation techniques to confirm their findings. They evaluated information sourced from the Internet mainly by comparing
websites and cross-checking information, looking for
consistent results. A general opinion was that if the same
information was repeated on several sites ‘‘it must be
correct.’’
I read several websites to see if the information was similar.
When I found a pattern, I took it as correct. (Becky, New
Zealand)
In addition, some compared the information with their
own initial beliefs, or other information sources such as
online forums, family and friends, health professionals,
books, and leaflets.
I knew I had the information I was looking for generally after
searching a number of sites and comparing a number of sources
of information and when I felt satisfied I had learnt all that
I could on a particular topic. I also liked to compare ⁄ discuss
what I had found on the Internet with other sources, such as my
midwife, obstetrician, GP, textbooks, etc. (Tania, New
Zealand)
Many women were aware that the Internet had the
potential to provide ‘‘unreliable’’ information, and some
were skeptical of Internet-based information.
I look for information to be evidence based and supported by
research. If I find the same or similar information on websites,
which I consider to be reputable, then I consider that the information is correct. It also has to make sense to me, i.e., be
explained ⁄ justified in logical scientific terms. While I do consider information from other websites, I try to be mindful of the
fact that those sources might have agendas, which do not align
with mine. (Tina, Australia)
Only a few remarked that the Internet domain suffix
would influence the sites they would consider trustworthy. In general, they reported trusting information from
reputable sources such as ‘‘government’’ or ‘‘hospital’’
websites. Many women also realized that the information
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they found might not necessarily be applicable to
them, and it should not be taken at face value. For
example:
It’s hard to really ever know if the info is correct because one’s
health condition might differ slightly or there may be different
factors surrounding it. If the same answer turned up in many
websites, particularly government health websites or national
organisations websites, then I can only ‘‘assume’’ it’s correct.
(Pauline, Australia)
Some considered whether or not the organization presenting the online information had anything to gain
financially, and if it had, they were less likely to trust
that specific source.
Concerns About Online Information
The minority with concerns about the quality of online
health information were uncertain because of inconsistencies among website(s). In addition, many participants
disclosed how information retrieved could cause stress
and anxiety. While finding out about complications or
conditions associated with their pregnancy, they were
not prepared to read about the worst case scenarios that
caused unnecessary worry. Several women wrote that
some of the information they read ‘‘strayed from
balanced’’ into ‘‘scare mongering’’:
At 30 weeks an ultrasound came back with the possibility of a
lesion on my baby’s lung. I had to wait 4 days before I could
speak with either my own doctor or the OB and have a followup ultrasound. I panicked and went to the Internet to research
on my own. All I found were horror stories and worst-case scenarios (death rates, etc.) involving what ‘‘could’’ have been
seen on my baby. The stress of that research was too much for
me to handle, and I was an emotional wreck for 4 days waiting
for my appointment with the obstetrician. (Kerri, Canada)
With information ‘‘overload’’ or ‘‘too much’’ of the
‘‘wrong information,’’ many women talked about how
the information could make them ‘‘paranoid,’’ ‘‘anxious,’’ or ‘‘frightened.’’
You can come across all sorts of issues and problems that you
may never encounter in your pregnancy. (Susan, Australia)
Use of Information Retrieved
Most women reported discussing the information with a
health professional. The main uses of the information
were to validate information, aid empowerment, and
assist decision-making.
Internet to Validate Information
Many wrote that they used the Internet to clarify information received from other sources—health professionals, family friends, or literature, such as pregnancy
books and leaflets:
For me it was more to confirm what a doctor had said. Silly,
I know, but I just wanted to understand it some more, which it
helped me to do. (Jess, New Zealand)
Information to validate information in itself for some
had a reassuring effect:
My first child had some shoulder dystocia when he was born,
and the doctor decided to induce me 2 days after my due date
with my second pregnancy. I was upset about this decision but
not quite brave enough to demand an explanation. Fortunately
I was able to find a fantastic website which explained the condition, the likelihood of it recurring, and the potential results.
This convinced me that my doctor was making the right
decision. (Jessy, Canada)
Internet to Aid Empowerment
Many women talked about the information they
acquired, that it made them feel ‘‘empowered,’’ ‘‘in control,’’ and ‘‘informed,’’ and gave them strength and confidence to speak to health professionals as ‘‘an equal’’:
I felt really empowered having such an amazing resource available from my own home … it put me in control to a degree, and
I feel really lucky that I was pregnant in this decade and not in
the ‘‘old days’’ where all info came from a medical professional,
who often gave only their OPINION and not balanced info …
I found that if I researched a topic, and THEN approached my
doctor, I got a more ‘‘honest’’ answer (more detail). Having the
ability to research at home helped me to make informed choices
during my pregnancy… (Rhianna, Australia)
Internet to Assist with Decision-Making
Internet information increased women’s ability to
become engaged in decisions pertinent to their pregnancy. It provided them with information about
treatments, options, and consequences. It assisted decision-making by giving them a greater understanding of
available choices:
I asked on a couple of forums about different experiences with
hospital vs. shared care with a GP. From the different opinions
and experiences on this topic, I made the decision to go with
shared care. It was mainly personal stories on this issue that
influenced my decision. (Infinity, Australia)
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Women talked about using the Internet to weigh up
the risks and benefits of options available, with the aim
of making an informed choice:
I was in two minds about having the triple test at 16 weeks, as
I did not feel the result of this should change how I proceeded
with my pregnancy. After researching this further I found
enough information about the risks and benefits associated with
the test to help me make my decision. (Teresa, UK)
Women used information to make decisions about
themselves; to help their health professionals make decisions; and to engage in shared decision-making. Timely
information led to more knowledgeable decisionmaking. Seeking information proved to be a powerful
means by which women took control and actively
addressed their information needs. None spoke negatively about how the information was perceived by their
health practitioner. The majority still valued their health
professional’s opinion. As one participant concluded:
There is no substitute for professional advice that is specific to
your situation. (Tina, Australia)
Discussion
This study found that infrequent antenatal appointments
and a continual need for information triggered the use
of the Internet. According to Cooke, pregnant women
have been used to getting pregnancy information by
means of health professionals and leaflets (21). There is
debate in the literature about the benefit of leaflets as
part of the consumer’s decision-making process. Previous researchers (3,22) found leaflets and professional
consultations to be essential in assisting patients with
their decision-making process, whereas Stapleton et al
(23) noted that the distribution of pregnancy information leaflets to pregnant women did not facilitate decision-making. For the women in this study, leaflets or
books were not universally acceptable because of their
‘‘limited,’’ ‘‘biased,’’ and most often ‘‘out-of-date’’
information.
In previous studies, we quantitatively showed that the
Internet prepares pregnant women to communicate with
health professionals and plays a role in decision-making
(10,13). The qualitative descriptions enrich the findings
from the survey data by illustrating how the Internet has
the potential to inform women’s decision-making about
pregnancy-related issues. Although many of the women
in this study understood the competing demands on
health professionals, they criticized them for failing
to provide appropriate information to allow women
to make informed choices. Insufficient time at
consultations is a potential barrier to patient engagement
343
and shared decision-making, impeding the opportunity
for patients to make informed choices (24,25).
The positive benefits for both the individual and the
organization are well documented when patients have an
active informed role in decisions about their care (1,26).
Woolf et al claim that health professionals are poor at
providing appropriate information, even in this era of
great access to information, when consumers of health
care want greater engagement in health care choices
(27). Jenkins defines decision-making as a process that
begins with a problem or situation associated with lack
of clarity or inconsistencies that need resolving
(28)—very much the case for some of the women in this
study. As Edwards and Elwyn (2) and Baumann and
Dauber (29) stated later, decisions are also made in the
absence of problems, and may involve choosing from a
number of alternative options, courses, or actions. Not
all the women in this study looked up information to
solve a ‘‘problem.’’ Instead, they wanted to understand
their options to make informed choices about various
aspects of their care. When equated with other information sources, the Internet had several advantages for the
participants, such as interactivity, information tailoring,
and anonymity.
Through online communities, study women collaborated and networked with other pregnant women to seek
information, share experiences, and determine availability of support. This finding is also borne out by previous
studies (30–32). Online pregnancy discussion groups or
support groups were viewed as a positive connecting
experience—‘‘very useful’’ and ‘‘practical,’’ as women
were able to share their ‘‘stories’’ with one another.
According to Hedrick, a common coping strategy is to
compare oneself with others to determine how well one
is doing (33). The online community gave women the
opportunity to ‘‘connect with others in similar situations.’’ For many women, the groups reduced anxiety
and isolation, provided reassurance, and assisted their
decision-making. Hoddinott and Pill examined antenatal
and postnatal expectations of first-time mothers to clarify their decision about whether or not to initiate
breastfeeding (34). They found that the women who felt
well prepared and coped best postnatally were those
who had support from others with similar experiences.
This study supported previous findings by Adler and
Zarchins (35). They used a virtual focus group as an
online support mechanism for pregnant women confined
to home bedrest, and reported that online support made
the women ‘‘feel they were not alone.’’
Many women described how they used the Internet for
reassurance, but no generally accepted definition exists
of what reassurance actually means within health care
and its therapeutic value is controversial (36). According
to Bessell et al, using the Internet for health information
has the potential to harm or benefit users (37). Although
344
BIRTH 38:4 December 2011
the women in this study mainly viewed the Internet as a
positive resource, it did come under some criticism.
It was blamed for ‘‘scare mongering,’’ similar to its
effects noted in two previous studies (38,39), both of
which observed that it can be a dangerous tool.
Participants in this study searched for online information using a range of techniques from simple one-word
searches and advanced methods to suboptimal techniques. Few women described using criteria mentioned
in several published guides for assessing online health
information (40–42). Yet, contrary to findings where
consumers were observed using information not applicable to their health setting (43), the women in this study
generally reported a strong awareness of accessing sites
linked to their country of residence. It could be suggested
that women are embracing the Internet as a ‘‘decision
aid.’’ However, one could argue that, to be recognized as
a ‘‘decision aid’’ tool, pregnancy-specific websites would
have to be evaluated to determine if they met International Patient Decision Aids Standards (44), which define
the criteria by which all decision aids are measured.
Strengths and Limitations
This study is the first qualitative research that has been
undertaken to explore pregnant women’s use of the
Internet in pregnancy and creates a foundation for
further research. Particular strengths of this study
include the use of online focus groups for data collection
and the power of the study to access a diverse global
sample in real time. The use of asynchronous communication is still very much a novel approach within social
science research. Although more than adequate for qualitative research, the participants were limited to those
from more affluent, English-speaking countries. The
focus groups were large enough to provide a diversity of
opinions and conducted across five countries; however,
it could be argued that there may be geographic or
cultural differences across other countries in relation to
Internet use in pregnancy, and hence the findings cannot
be universally generalized.
Conclusions
With the proliferation of health sites on the Internet,
pregnant women now have the potential to have the
same access to medical information as health professionals. Findings from this study suggest that they are
becoming informed consumers who want more control
over decisions affecting their maternity care. The use of
the Internet by pregnant women to seek health information and advice suggests a lack of information available
from health professionals. As a result of the pressure on
the health professional’s time, women may not be
receiving adequate information.
The onus is on health professionals to acknowledge
that women access the Internet for support and pregnancy-related information to inform their decisionmaking. Health care practitioners ideally should initiate
as much dialog as possible, early in pregnancy, directing
women where to look for accurate, comprehensive, and
understandable online pregnancy health information. In
this way, women will avoid becoming overwhelmed
with extraneous and often conflicting information. Both
practitioners and women need to recognize the necessity
to evaluate online health information critically. Health
professionals can enhance autonomy by embracing the
concept of shared decision-making and being prepared
to discuss the resulting information so that women can
make informed choices about their care.
This study highlights the scope for further research.
For policy and practice development, it would be valuable to establish the short- and long-term effects and
adverse effects (if any) of specific pregnancy-related Internet informed decisions (e.g., on mode of birth, induction of labor, or infant feeding). Future research should
evaluate the content of websites containing specific
pregnancy-related information as potential.
Acknowledgments
The authors wish to thank the Department for Employment and Learning, Northern Ireland, for supporting and
funding this research, and all the women who participated in the study.
References
1. Kinnersley P, Edwards AGK, Hood K, et al. Interventions before
Consultations for Helping Patients Address Their Information
Needs, Cochrane Database of Systematic Reviews (Issue 3).
Chichester, UK: John Wiley, 2007.
2. Edwards A, Elwyn G., eds. Shared Decision-Making in Health
Care—Achieving Evidence Based Patient Choice, 2nd ed. Oxford:
Oxford University Press, 2009.
3. O’Connor AM, Bennett CL, Stacey D, et al. Decision Aids for
People Facing Health Treatment or Screening Decisions, Cochrane Database of Systematic Reviews (Issue 3). Chichester, UK:
John Wiley, 2009.
4. Kirkham M, ed. Informed Choice in Maternity Care. Basingstoke:
Palgrave Macmillan, 2004.
5. Spoel P. The Meaning and Ethics of Informed Choice in Canadian
Midwifery, 2004. Accessed March 10, 2011. Available at: http://
www.inter-disciplinary.net/ptb/mso/hid/hid3/spoel%20paper.
pdf.
6. Childbirth Connection. Journey to Parenthood: Informed Decision-Making in Your Pregnancy. Accessed March 10, 2011.
Available at: http://www.childbirthconnection.org/article.asp?ck=
10479.
BIRTH 38:4 December 2011
7. Internet World Stats. Usage and Population Statistics, 2011.
Accessed July 17, 2011. Available at: http://www.internetworldstats.com/stats.htm.
8. Pandey SK, Hart JJ, Tiwary S. Women’s health and the Internet:
Understanding emerging trends and implications. Soc Sci Med
2003;56(1):179–191.
9. Bernhardt JM, Felter EM. Online paediatric information seeking
among mothers of young children: Results from a qualitative
study using focus groups. JMIR 2004;6(1):e7. Accessed March
10, 2011. Available at: http://www.jmir.org/2004/1/e7/.
10. Lagan BM, Sinclair M, Kernohan WG. A web-based survey of
midwives’ perceptions of women using the Internet in pregnancy:
A global phenomenon. Midwifery 2011;27(2):273–281.
11. Lagan BM, Sinclair M, Kernohan WG. Pregnant women’s use of
the Internet: A review of published and unpublished evidence.
Evid Based Midwifery 2006;4(1):17–23.
12. Kuhlthau C. Seeking Meaning: A Process Approach to Library
and Information Services. Norwood, New Jersey: Ablex, 1993.
13. Lagan BM, Sinclair M, Kernohan WG. Internet use in pregnancy
informs women’s decision-making: A web-based survey. Birth
2010;37(2):106–115.
14. Kalbach J. ‘‘I’m feeling lucky’’: Emotions and information
seeking information. Interactions 2004;11(5):66–67.
15. Lehoux P, Poland B, Daudelin G. Focus group research and ‘‘the
patient’s view.’’ Soc Sci Med 2006;63(8):2091–2104.
16. Turney L, Pocknee C. Virtual focus groups: New frontiers in
research. IJQM 2005;4(2):32–43.
17. Salmon G. E-Moderating: The Key to Teaching and Learning
Online. London: Routledge Falmer, 2003.
18. Madge C. Exploring Online Research Methods, 2006. Accessed
March 10, 2011. Available at: http://www.geog.le.ac.uk/orm/
questionnaires/quessampling.htm.
19. Nvivo 7. Nvivo 7 Qualitative Data Analysis Software. Victoria,
Australia: QSR International Pty Ltd, 2007.
20. Ritchie J, Spencer L. Qualitative data analysis for applied policy
research. In: Bryman A, Burgess R, eds. Analysing Qualitative
Data. London: Routledge, 1994:173–194.
21. Cooke P. Helping women to make their own decisions. In: Raynor
MD, Marshall JE, Sullivan A, eds. Decision-Making in Midwifery
Practice. Edinburgh: Churchill Livingstone, 2005:127–142.
22. Ford S, Schofield T, Hope T. Are patients’ decision-making
preferences being met? Health Expect 2003;6(1):72–80.
23. Stapleton H, Kirkham M, Thomas G. Qualitative study of
evidence based leaflets in maternity care. BMJ 2002;324(7338):
639–643.
24. Le´gare´ F, Ratte´ S, Gravel K, Graham ID. Barriers and facilitators
to implementing shared decision-making in clinical practice:
Update of a systematic review of health professionals’
perceptions. Patient Educ Couns 2008;73(3):526–535.
25. Godolphin W. Understanding decision-making in healthcare
and the law: Shared decision making. Healthc Q 2009;12:e186–
e190.
26. Sandford J. Accessing health information in a hospital setting:
A consumer views study. Aust Health Rev 2003;26(1):138–144.
345
27. Woolf SH, Chan ECY, Harris R, et al. Promoting informed
choice: Transforming health care to dispense knowledge for
decision-making. Ann Intern Med 2005;143(4):293–300.
28. Jenkins M. Improving clinical decision-making in nursing. J Nurs
Educ 1985;24(6):242–243.
29. Baumann A, Dauber R. Decision-Making and Problem Solving
in Nursing: An Overview and Analysis of Relevant Literature.
Toronto: Literature Review Monograph, Toronto University, 1989.
30. Miyata K. Social support for Japanese mothers online and offline.
In: Wellman B, Haythornthwaite C, eds. The Internet in Everyday
Life. Malden, Massachusetts: Blackwell, 2002:520–548.
31. Drentea P, Moren-Cross JL. Social capital and social support on
the web: The case of an Internet mother site. Sociol Health Illn
2005;27(7):920–943.
32. Orgad S. The transformative potential of online communication:
The case of breast cancer patients’ Internet spaces. Feminist
Media Studies 2005;5(2):141–161.
33. Hedrick J. The lived experience of pregnancy while carrying a
child with a known, nonlethal congenital abnormality. J Obstet
Gynecol Neonatal Nurs 2005;34(6):732–740.
34. Hoddinott P, Pill R. Qualitative study of decisions about infant
feeding among women in the East End of London. BMJ
1999;318(7175):30–34.
35. Adler CL, Zarchin YR. The ‘‘virtual focus group’’: Using the
Internet to reach pregnant women on home bed rest. JOGNN 2002;31(4):418–427.
36. Teasdale K. The concept of reassurance in nursing. J Adv Nurs
1989;14(6):444–450.
37. Bessell TL, McDonald S, Silagy CA, et al. Do Internet interventions for consumers cause more harms than good? A systematic
review. Health Expect 2002;5(1):28–37.
38. Lavender T, Campbell E, Thompson S, Briscoe L. Supplying
women with evidence based information. Foundation of Nursing
Studies Dissemination Series; Developing Practice Improving
Care 2003;2(4):1–4.
39. Lalor G, Devane D, Begley CM. Unexpected diagnosis of fetal
abnormality: Women’s encounters with caregivers. Birth 2007;
34(1):80–88.
40. Agency for Health Care Policy and Research. Assessing the Quality of Internet Health Information, 1999. Accessed March 10,
2011. Available at: http://www.ahrq.gov/data/infoqual.htm.
41. Charnock D. The DISCERN Handbook: Quality Criteria for
Consumer Health Information. Abingdon, UK: Radcliffe Medical
Press, 1998.
42. Commission of the European Communities, Brussels. eEurope
2002: Quality criteria for health related websites. J Med Internet
Res 2002. Accessed March 10, 2011. Available at: http://
www.jmir.org/2002/3/e15/.
43. Eysenbach G, Powell J, Kuss O, Sa E. Empirical studies assessing
the quality of health information for consumers on the World Wide
Web: A systematic review. JAMA 2002;287(20):2691–2700.
44. International Patient Decision Aids Standards Instrument. IPDASi
Assessment. Accessed March 10, 2011. Available at: http://
www.ipdasi.org/.