NOTES FROM THE FIELD
Routine Prenatal HIV Testing: Women’s Concerns and Their
Strategies for Addressing Concerns
Pamela Rothpletz-Puglia•Deborah Storm•
Carolyn Burr•Deanne Samuels
Published online: 8 February 2011
? The Author(s) 2011. This article is published with open access at Springerlink.com
solicit women’s opinions about the process of routine
prenatal HIV testing to identify strategies for routine test-
ing that will address women’s concerns, increase their level
of comfort with testing, and support universal prenatal HIV
testing. A convenience sample of English-speaking women
between 18 and 45 years of age who were HIV-negative or
of unknown HIV status were recruited for focus groups at
four diverse community sites in four states. Focus group
discussion questions addressed health care provider
approaches and actions that would make a woman feel
more comfortable with the process of routine prenatal HIV
testing. Twenty-five women agreed to participate; most
women (64%) were of Black, non-Hispanic race/ethnicity;
44% were 25–34 years of age. Thematic analysis of
women’s concerns about routine prenatal HIV testing fell
The purpose of this exploratory study was to
into the following categories: fear, protecting the baby,
strategies for addressing these concerns were related to
themes of education and information, normalizing HIV
testing, patient–provider relationships, systems, and private
communication. Participants offered numerous insightful
and practical suggestions for addressing their concerns
thereby supporting universal routine prenatal HIV testing.
The themes that arose in this study support the conclusion
that women will be more comfortable with routine prenatal
HIV testing if they are fully informed and knowledgeable
about the rationale for HIV testing during pregnancy and
their right to decline, and if testing is carried out in a confi-
dential and supportive health care environment.
HIV testing ? Prenatal care ? HIV prevention
In 2006, the Centers for Disease Control and Prevention
(CDC) released revised U.S. Public Health Service (US-
PHS) recommendations for HIV testing of adults, adoles-
cents, and pregnant women in healthcare settings .
These guidelines reiterate 2001 recommendations for uni-
versal, routine HIV screening early in pregnancy but advise
simplifying the screening process to maximize opportuni-
ties for women to learn their HIV status during pregnancy,
preserving the woman’s option to decline testing, and
promoting a patient–provider relationship conducive to
optimal clinical and preventive care. The USPHS recom-
mends an opt-out approach during pregnancy where
women receive routine HIV testing as part of prenatal care
unless they indicate they do not want to be tested and
P. Rothpletz-Puglia (&)
Franc ¸ois-Xavier Bagnoud (FXB) Center, School of Nursing
(SN), University of Medicine and Dentistry of New Jersey
(UMDNJ), 65 Bergen Street, SSB 841, Newark,
NJ 07107, USA
D. Storm ? C. Burr
Franc ¸ois-Xavier Bagnoud (FXB) Center, School of Nursing
(SN), University of Medicine and Dentistry of New Jersey
(UMDNJ), 65 Bergen Street, SSB 8th floor, Newark,
NJ 07107, USA
Nova Southeastern University, 1750 NE 167 Street, North
Miami Beach, FL 33162, USA
Matern Child Health J (2012) 16:464–469
Studies have shown that routine prenatal HIV testing is
acceptable to women [2–5]. However, evidence suggests
that there are ongoing barriers to universal testing related
to: (1) individual patient factors, including low perceived
risk for HIV, race, socioeconomic status, and confidenti-
ality concerns; (2) provider factors, such as the need to
improve knowledge, increase the rates at which they ask
about or recommend testing, and strengthen testing practice
patterns; and (3) site-related factors, including the need to
expand testing in non-traditional settings [6–10]. There is
limited information regarding women’s specific concerns
about prenatal HIV testing and how these concerns can be
most effectively addressed [4, 11–13]. The purpose of this
study was to solicit women’s opinions about the process for
routine prenatal HIV testing in order to identify strategies
for routine testing that will address women’s concerns and
support universal prenatal HIV testing.
English-speaking women between the ages of 18 and
45 years who were HIV-negative or of unknown HIV
status were recruited from four, diverse community sites
providing preventive services to women at-risk for HIV
infection (Table 1). Case Managers recruited a conve-
nience sample of women from their caseloads. Focus
groups were conducted by a single, external moderator at
each site over a 3 month time-span. A limited demographic
survey including age, race/ethnicity, and pregnancy status
was completed prior to discussion.
Focus groups were chosen as the primary means of data
collection to gain a deeper understanding of women’s
opinions about the process of routine prenatal HIV testing.
The discussions explored women’s thoughts, attitudes, and
expectations surrounding testing and allowed investigation
of women’s perspectives and experiences. Focus group
questions addressed health care provider approaches and
actions that would potentially make a woman feel more
comfortable with the process of routine prenatal HIV
testing. Women were asked about the kind of information
they felt should be provided to make them more comfort-
able with the process of testing.
Institutional Review Board (IRB) approval was obtained
from the principal investigator’s university. Participating
sites obtained IRB approval or submitted a letter of
agreement if the site did not have an IRB. Participants
received $50.00 compensation. Focus group discussions
were audio-taped and transcribed for subsequent content
Twenty-five women consented to participate. Data were
not collected about women who did not choose to partici-
pate. About two-thirds (64%) of participants were of Black,
non-Hispanic race/ethnicity, and 44% were 25–34 years
old (see Table 2).
Transcribed data were entered into the qualitative research
software NVivo 7 (QSR International). One coder analyzed
the data using content analysis and developed a coding
schema using a combination of in vivo terms (literal terms
used by the research participants) and open codes (those
that were interpreted by the investigator). Data were coded
into 21 categories within two primary domains. Some
categories also held sub-categories. Once coding was
completed, matrices examining variables within and across
the two domains were developed to verify saturation of
codes and themes.
Table 1 Community Agencies Providing HIV care and Preventive
Site locationNumber of clients
Fort Lauderdale, FL2,9848
Table 2 Characteristics of focus group participants
White/non hispanic4 16
Black/non hispanic 16 64
More than 1 race28
Gave birth within the last year14
Matern Child Health J (2012) 16:464–469465
Two major content domains were identified regarding
women’s opinions about routine prenatal HIV testing:
Women’s Concerns and Women’s Strategies for Address-
ing Concerns. The 10 most frequently coded categories are
described below and listed in Table 3.
Women’s Concerns: Fear
Women in each focus group expressed concern about the
range of fears that women may experience in relation to
prenatal HIV testing. This category reflected one of the two
most commonly cited categories in the coding schema.
Women’s fears were sub-categorized into fear of HIV
infection, fear of confirming a partner’s infidelity, and fear
of judgment and/or discharge from medical care if their
results are positive.
The most frequently cited fear-related concern was fear
of HIV infection which was described in two ways: fear of
illness, and more commonly as ‘‘a death sentence.’’ Several
women in each focus group were unaware of advances in
HIV care and treatment, as evidenced by statements such
as, ‘‘It is pretty much like a death sentence I think, don’t
you?’’ or, ‘‘I think one of the reasons why people wouldn’t
rather know is because they live with that on their mind
thinking—’Oh I got AIDS, I’m going to die tomorrow.’’’
Women in each group acknowledged that general knowl-
edge about HIV infection and treatment are lacking, and
speculated that a lack of information and education con-
tribute to women’s fear about prenatal HIV testing.
Fear of confirming a partner’s infidelity also arose as a
potential barrier to prenatal HIV testing. Several women in
two focus groups discussed this concern. One woman sta-
ted, ‘‘A lot of people that I know who are married, their
husbands cheat on them all the time, every day—you
know. They don’t want to know. And I think it opens their
eyes. If they are HIV-positive, then it’s true. It makes it
real. You know, I can no longer pretend he’s not doing
what he is doing. It’s real’’.
The final sentiment about fear was related to medical
professionals’ perceived judgments and/or fear that a
woman would be discharged from medical care if her
results are positive. One woman talked about feelings of
shame and how a woman might not take the test for fear
that the medical doctor would ‘‘…be thinking about what
she’s done in her past.’’ Another woman stated that she was
a heroin addict and that in the past she told her medical
doctor about her addiction. She reported that the medical
doctor promptly called the pharmacy to cancel her pre-
scriptions. She did not relay what the prescriptions were,
nor did she understand why the prescriptions were can-
celled. Her take-away message was that her medical doctor
would no longer take care of her because she admitted to
having a heroin addiction. This woman stated that, ‘‘I was
thinking what about if I had AIDS or HIV, you know,
they’re going to do the same thing. That was my thinking.
You know, I thought that if something (HIV) would happen
to me, then he just was going to discharge me from his
clinic and that would be it.’’
Women’s Concerns: Protecting Women and Children
Women in each focus group felt strongly about protecting
the unborn baby. This category, along with Fear, was the
most frequently mentioned during the focus groups.
Almost every participant spoke about maternal instincts to
protect babies and children, even in the face of adversity.
Though three women felt that there are circumstances in
which a woman may not protect her unborn child; teen
pregnancy, drug addiction, and depression.
Several women from each focus group were concerned
about women feeling coerced or pressured to be tested and
spoke of the need to preserve the woman’s rights and
Table 3 Content domains and categories, passages coded, and sources
Domain Categories Number of passages codedSources
Women’s concernsFear45 4 sites
Protecting the baby 45 4 sites
Protecting the woman 39 4 sites
Confidentiality 143 sites
Stigma 133 sites
Women’s strategies for addressing concernsEducation and information125 4 sites
Normalizing HIV testing 43 4 sites
Patient–Provider relationship 39 4 sites
Systems 193 sites
Private communication17 3 sites
466 Matern Child Health J (2012) 16:464–469
confidentiality. All the women in the focus groups
acknowledged these discussions with nods of agreement, or
verbally confirmed their agreement.
Several participants expressed concern about whether
women would be specifically aware of HIV testing and
about how explicit the opt-out process would be. Several
participants were concerned about women being tricked or
unaware that they could opt-out of HIV testing. For
example, one woman stated, ‘‘But I think that the doctor
should definitely make it clear that they can opt-out. Like
you don’t want people to feel like after it was done, and
you know if there was a positive result, that they were
tricked into having it.’’
Three of the four focus group discussions also included
participants’ cautions about protecting women by pre-
serving confidentiality in all phases of the routine prenatal
HIV testing process. Many participants discussed how HIV
testing puts relationships between the woman and her
partner at risk and ‘‘opens up a whole other can of worms.’’
Some women felt that if the father were in the exam room
he may decline the testing or coerce the mother into opting
out ‘‘for their ego’s sake.’’ One woman argued that it is not
‘‘safe’’ to discuss HIV testing with a male partner in the
room since many women deal with domestic violence.
Another woman felt that ‘‘it has to be her choice and it’s up
to her, how and when the communication takes place with
Women’s Concerns: Stigma
Women from three focus groups mentioned stigma as a
barrier to HIV testing. Most of the discussions were related
to healthcare providers targeting at-risk women for prenatal
HIV testing, thus leaving out a whole segment of the
population and stigmatizing urban minorities. Other dis-
cussions about stigma involved women’s perceptions about
healthcare providers’ negative attitudes and beliefs about
pregnant women living with HIV infection.
Women’s Strategies for Addressing Concerns:
Information and Normalizing Prenatal HIV Testing
Information and education were the most frequently dis-
cussed strategies for enhancing prenatal HIV testing
acceptance and for ensuring women’s rights. The women in
every group felt that general knowledge about HIV infec-
tion and treatment are lacking, and they hypothesized that a
lack of information contributes to women’s fear about
prenatal HIV testing. All women felt that people would be
more inclined to test for HIV if they were more educated
about prevention and treatment.
The content of education that the women felt should be
included was information about the risks and benefits of
HIV testing and treatment during pregnancy and beyond.
Several women also suggested that information about the
confidentiality of test results would help reduce anxiety.
Each focus group included a discussion about how HIV has
shifted to a chronic disease paradigm. Some women in
each group expressed surprise when other women spoke
about the efficacy of treatment for reducing perinatal
transmission and for preventing disease progression. All
women felt that people need more information about HIV
infection in this era, as this knowledge may mitigate some
of the fear surrounding HIV testing. The women also felt
that perinatal transmission statistics would be a powerful
educational incentive for perinatal testing, as would
information about the impact of treatment on women’s
Many women also discussed the need for expanding
educational efforts beyond targeted high-risk audiences to
increase knowledge and awareness at a societal level.
Women felt that the provision of all-inclusive HIV pre-
vention and treatment information in high schools or in the
community would help people become more comfortable
with HIV prevention by normalizing HIV testing. One
young woman indicated that she ‘‘didn’t know crap about
AIDS. Kids in the city are getting more information than
kids in suburbs. When I moved to Chicago it (HIV) was
everywhere, I was like blown away.’’ All of the partici-
pants felt that HIV education should be part of mainstream
high school education and community programs such as
the Special Supplemental Food Program for Women,
Infants, and Children (WIC). Some other suggestions for
community outreach campaigns and education about HIV
prevention and treatment included information booths in
malls, outreach teams, Boys and Girls Clubs, and prenatal
The women also suggested that information about HIV
prevention should be woven into other educational cam-
paigns so that HIV testing is not the sole focal point, but
one aspect of preventive health care.
Women’s Strategies for Addressing Concerns:
Patent–Provider Relationships, Private
Communications and Systems
Participants spoke about how a comfortable environment
and good patient–provider interaction helps to facilitate the
process of HIV testing. The barriers to the patient–provider
relationship included complaints about physicians not
speaking fluent English, caseloads—‘‘a lot of doctors are so
tired from other patients,’’ perceptions of healthcare pro-
vider attitudes toward women on the margin, and imper-
sonal care. Interestingly, women in a few of the discussions
about patient–provider relationships also noted that the
Matern Child Health J (2012) 16:464–469 467
patient–provider relationship may not be a viable strategy
for improving the process of prenatal HIV testing. These
women acknowledged that time and caseload barriers are
not easily rectified in a world where the budget is bottom
Participants agreed that when there is not a strong or
effective relationship with a particular physician, there
were likely to be other health care professionals and clin-
ical staff members that do relate well to patients, and
referred to ‘‘Plan B’’ as capitalizing on the strengths of
these individuals. The ‘‘Plan B’’ suggestions included
making changes within the system. For example, several
women stated that they relate to the person in the front
office well. The women suggested that there should be at
least one person on staff that women can approach with
The final recommendation that arose in three of the four
focus groups was the need for privacy when speaking about
HIV prevention, testing, and treatment. Privacy was descri-
bed as necessary for confidentiality, protecting women, and
for providing an environment in which women can trust
medical providers. Private communication was also sug-
gested as a way to enable a woman to make a decision
without being influenced by her partner, and to protect her
from a partner’s response if needed.
It is important to acknowledge that the number of focus
groups in this study was limited, and that participants were
from sites providing services for individuals at risk for
HIV. Additional work is needed to identify concerns and
strategies about universal routine prenatal HIV testing
among women not identified as at risk or in other types of
Despite the exploratory and limited nature of this study,
the themes that arose in this study are insightful and useful,
and are consistent with other findings in the literature. The
provision of information about HIV arose as a way to
increase awareness, reduce fear and stigma, and to increase
HIV testing acceptance. Studies suggest that prenatal
testing rates are lower when women are perceived as low
risk by themselves or their providers [2, 14, 15].
Other focus group studies suggest that fear of a positive
test result and lack of knowledge regarding the benefits of
early detection were common barriers to HIV testing for
prenatal patients [11, 13]. In a survey of men and women
about overcoming barriers to HIV testing, knowledge gaps
about the benefits of treatment were identified and the
authors discuss how people may be more motivated to test
if they know the benefits of early treatment . A survey
of 748 recently pregnant women showed that prenatal
testing was higher among women with knowledge of
interventions to prevent perinatal HIV transmission .
These findings strongly support the need for increased
education and awareness about HIV care and treatment and
for providing information-based rationale for prenatal HIV
Suggestions for integrating information into prenatal
care included increasing awareness at a societal level rather
than targeting certain individuals for testing. Women also
felt that HIV testing should be incorporated into other types
of prevention efforts so that it is not the sole focal point.
Similar to findings from patient focus groups in an inner
city urgent care center , women in this study suggested
media outlets such as television or radio announcements as
sources of information about HIV.
Women’s suggestions are consistent with a recent call
by Arya et al. for media campaigns to address low
knowledge about perinatal HIV transmission in the U.S.
. Increased public awareness is needed to complement
other public health initiatives, such CDC’s ‘‘One Test Two
Lives’’ campaign which focuses on building capacity
among healthcare providers to support universal routine
prenatal HIV testing and the prevention of perinatal HIV
transmission [20, 21].
In addition, effective patient–provider relationships
arose as a strategy that would contribute to women’s
decisions to accept prenatal testing. Studies investigating
barriers to universal prenatal testing reported that women’s
decisions were strongly influenced by providers’ recom-
mendations and the patient–provider relationship [7, 22].
Similar to findings from other HIV testing research, women
discussed risks of harm related to prenatal HIV testing such
as partner violence, confidentiality, and stigma, including
fear that health care providers or the community will treat
them differently [8, 18, 22]. Strategies for reducing these
risks included ensuring private communication and giving
information about testing confidentiality.
The themes that arose in this study support the conclu-
sion that women will be more comfortable with universal,
routine, prenatal HIV testing if they are fully informed and
knowledgeable about the rationale for testing and their
right to decline, and if prenatal HIV testing is carried out in
a confidential and supportive health care environment.
Agreement #U69HA05573 with the U.S. Department of Health and
Human Services, Health Resources and Services Administration
(HRSA), HIV/AIDS Bureau (HAB). The authors would like to thank
the Ryan White Care Act sites, and the participants who took the time
to help us learn about strategies to improve prenatal HIV testing. The
authors would also like to acknowledge the support and wisdom of
Linda S. Podhurst, PhD, and HRSA HAB Project Officer Helen
This research was funded through Cooperative
468Matern Child Health J (2012) 16:464–469
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medium, provided the original author(s) and source are credited.
This article is distributed under the terms of the
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