DOI: 10.1111/1471-0528.12741
www.bjog.org
 I don t care whether it s HPV or ABC, I just want
to know if I have cancer. Factors influencing
women s emotional responses to undergoing
human papillomavirus testing in routine
management in cervical screening: a qualitative
study
M O Connor,a L Costello,a J Murphy,a W Prendiville,b CM Martin,c JJ O Leary,c L Sharp,a on behalf
of the Irish Screening Research Consortium (CERVIVA)
a b
National Cancer Registry Ireland, Cork Airport Business Park, Cork, Ireland The Adelaide and Meath Hospital, Tallaght, Dublin, Ireland
c
Coombe Women and Infants University Hospital, Dublin, Ireland
Correspondence: M O Connor, National Cancer Registry Ireland, Building 6800, Cork Airport Business Park, Kinsale Road, Cork, Ireland.
Email [e-mail]
Accepted 30 November 2013. Published Online 1 April 2014.
Objective To explore emotional responses, and predictors of emotional responses related to HPV infection rather than testing.
negative reactions, among women undergoing human Factors that influenced whether women experienced negative
papillomavirus (HPV) tests in routine clinical practice. emotional responses were: concerns over abnormal cytology or
diagnosis of CIN; HPV knowledge; awareness of HPV being
Design Exploratory qualitative interview study.
sexually transmitted; awareness of HPV prevalence; and HPV
Setting A large busy colposcopy clinic in a Dublin hospital. information needs. Women s concerns about abnormal cytology/
CIN dominated all other issues.
Sample Twenty-seven women who had had an HPV DNA test in
the previous 6 months following one or more low-grade cytology Conclusions These qualitative data suggest that in the context of
tests or treatment for cervical intraepithelial neoplasia (CIN). follow up of abnormal cytology or treatment for CIN, the
emotional impact of HPV testing may be modest: women s
Methods In-depth semi-structured interviews were conducted.
primary concerns at this time relate to abnormal cytology/CIN.
Interview transcripts were analysed using a thematic approach
(Framework Analysis). Keywords Abnormal cytology, cervical intraepithelial neoplasia,
cervical screening, emotional responses, human papillomavirus
Main outcome measures Women s emotional responses and
testing, qualitative.
predictors of negative emotional reactions.
Results For most women, having a test for high-risk HPV types
generated little negative or positive emotional impact. Adverse
Please cite this paper as: O Connor M, Costello L, Murphy J, Prendiville W, Martin CM, O Leary JJ, Sharp L, on behalf of the Irish Screening Research
Consortium (CERVIVA).  I don t care whether it s HPV or ABC, I just want to know if I have cancer. Factors influencing women s emotional responses to
undergoing human papillomavirus testing in routine management in cervical screening: a qualitative study. BJOG 2014: DOI: 10.1111/1471-0528.12741.
testing for infection with high-risk HPV types, instead of
Introduction
conventional cervical cytology,2 4 but primary HPV screen-
The causal relationship between certain strains of human ing will not be implemented until there is greater clarity
papillomavirus (HPV) and cervical cancer1 is transforming around appropriate follow up of women who test HPV-po-
cervical cancer screening strategies. It is widely anticipated sitive. In the meantime, HPV testing is being incorporated
that screening for cervical cancer in the future will involve into screening in other ways. It is being used for co-testing
ª 2014 Royal College of Obstetricians and Gynaecologists 1
O Connor et al.
with cytology in some settings,5 has recently been imple- those up to 18 years.19 In 2012, testing for high-risk HPV
mented for triage of women with low-grade abnormal cer- types was routinely introduced for post-treatment follow
vical cytology in England;6 and has been incorporated into up of women treated for CIN 2/3 in colposcopy clinics
the follow-up protocol for women who have been treated affiliated with CervicalCheck.
for cervical intraepithelial neoplasia (CIN) in various coun-
tries.6 8 Participants and recruitment
Existing evidence suggests that HPV testing, although Colposcopy clinic administrative staff in a public hospital
clinically effective and most likely cost-effective,9,10 may affiliated with CervicalCheck identified the 200 women
result in a significant psychological burden for women. A who had most recently had an HPV DNA test in the previ-
recent systematic review concluded that women have con- ous 6 months following one or more low-grade cytology
cerns about HPV testing, and have worries surrounding the tests or treatment for CIN. Women who were pregnant at
disclosure of having a sexually transmitted infection.11 Spe- the time of the HPV test were excluded (those who were
cifically, quantitative research in the UK found that receipt pregnant at the time of the interview were eligible to take
of an HPV-positive result may be associated with a range part). Women were stratified by the test result (high-risk
of negative emotional consequences including distress and HPV-positive/HPV-negative), and sent a letter signed by
anxiety;12 14 moreover, receipt of a negative HPV test result the lead clinician (WP), inviting them to take part. Inter-
was not reassuring.12 ested women returned a reply slip to the research team,
There are several limitations in the available evidence and an interviewer (MOC and LC) contacted them to
regarding women s emotional responses to HPV testing. arrange an interview.
No studies have yet investigated women s emotional The joint Research Ethics Committee of St James Hospi-
responses to HPV testing in the context of the new HPV tal and the Adelaide and Meath Hospital, Dublin approved
protocols. The studies included in the systematic review11 the study. All participants provided written informed con-
were conducted within clinical trials, or in the USA where sent before being interviewed.
there is no organised cervical screening programme. Two
studies asked women to hypothetically think how they Interviews
would feel if they underwent HPV testing or if they tested In-depth interviews were carried out in the woman s home
positive for HPV15,16 and the findings may not reflect the or at another convenient location. A semi-structured topic
emotional responses of women tested routinely within guide (see Supporting information, Appendix S1), devel-
organised screening. Studies mainly investigated the nega- oped from literature review, guided the interviews; this was
tive impact of HPV testing; little is known about positive allowed to evolve as interviews progressed. Core issues cov-
impacts (e.g. reassurance) or what influences whether a ered in the topic guide included: screening history; under-
woman has an emotional response. Moreover, the intro- standing of HPV and abnormal cytology results; having the
duction of HPV vaccination programmes may have chan- HPV test; emotional impact of the test result; and informa-
ged women s awareness of HPV and this could impact on tion needs. Questions were somewhat specific to whether
women s reactions to HPV testing.17 the woman had a positive or negative test result. Examples
In order to extend the existing evidence-base, we con- of questions asked about emotional responses to the test
ducted exploratory in-depth interviews among women who result include:  How did you feel at the time (of the test
had had an HPV test as part of routine follow up after an result)? and  How did you feel when you learned your
abnormal cytology test or treatment for CIN. Our objec- HPV test result was negative? HPV and its association with
tives were to (1) explore women s emotional reactions sexual activity was not explicitly discussed in the interview
(both positive and negative) to undergoing HPV testing unless raised by the participant. Interviews were audio-re-
and (2) identify factors that influence negative emotional corded with the woman s consent and ranged from 25 to
responses to HPV testing. 70 minutes in length (mean 48 minutes). Saturation of
data, for the group as a whole, was reached after 27 inter-
views since no new themes or issues related to the topics
Methods
under investigation had been reported by the interviewees
Setting during the last three interviews.20
The study was conducted in Ireland in 2011. Since 2008, a
national cervical screening programme, CervicalCheck, has Analysis
been implemented, offering free cervical cytology tests to Interviews were transcribed verbatim and anonymised.
women aged 25 60 years.18 In 2010, a school-based Concurrent data collection and analysis allowed for issues
national HPV vaccination programme (nonmandatory) was that arose in earlier interviews to inform the content of
initiated targeting girls aged 12 13 years, with catch-up for subsequent interviews. The interviewers independently
2 ª 2014 Royal College of Obstetricians and Gynaecologists
Emotional responses to undergoing HPV testing
reviewed and coded transcripts of the first two interviews, Two major themes were identified: (1) emotional responses
discussed these to arrive at consensus, and combined the and (2) factors influencing negative emotional responses.
codes into families. The codes were applied to the rest of
the data set and the code lists were refined and developed Emotional responses
as the analysis progressed. The interviewers held regular Most of the women interviewed did not describe any emo-
discussions to discuss uncertainties and reach consensus on tional reactions: this was irrespective of their HPV test
all aspects of the data. Thematic analysis was undertaken result. Only nine women reported an emotional response
using the Framework Approach to organise the data and to HPV infection testing or receipt of test results. The
identify emerging themes.21 This involves the development emotional reactions comprised: (1) positive emotional
of a matrix, with themes or subthemes comprising the col- responses, which included relief, happiness or reassurance
umns, and cases the rows, of the matrix. Data were sum- and (2) negative emotional responses, which included (a)
marised within the framework matrix to facilitate shame, embarrassment or stigma (which were the most
systematic organisation of the data and examination of common negative reactions), (b) regret or self-blame and
themes and cases. Associations, relationships and explana- (c) anxiety or worry (Table 2). Among women who experi-
tions within the data were explored using the framework. enced negative emotional reactions, their response was pre-
Results reported here relate to emotional responses; find- dominately related to HPV infection rather than to HPV
ings in relation to women s information needs will be testing per se.
reported elsewhere. O Connor M, Costello L, Murphy J,
Prendiville W, Martin CM, O Leary JJ, Sharp L (unpub- Relief, happiness or reassurance
lished observations). Direct quotes that illustrate partici- For a very few women, receipt of an HPV-negative test
pants narratives and are representative of themes and result was associated with feelings of relief or happiness.
subthemes relating to emotional responses to HPV testing For instance, one woman was  delighted she had been
have been presented. Each quote is followed by the relevant tested and felt that it was one less thing for her to worry
participant ID number (INT) and what the woman about. In addition, a very few women expressed reassur-
believed her HPV test result was (HPV+, HPV-, or HPV ance in relation to undergoing testing per se. For example,
result not known for women who could not recall their test one woman, who could not recall her test result, felt that it
results). was better to know if she had an HPV infection than to be
unaware. Another woman, who recalled that her test result
was negative, felt that having regular HPV tests would be
Results
reassuring for women.
The sociodemographic characteristics of the 27 women
interviewed are shown in Table 1. Women ranged in age Shame, embarrassment or stigma
from 26 to 61 years (median 35 years). Six women stated The shame and embarrassment expressed by some of the
that they had tested HPV-positive, 11 that they were women interviewed resulted from HPV being sexually
HPV-negative and ten could not recall their test result. transmitted. One woman compared HPV to sexually trans-
mitted infections like gonorrhoea and chlamydia, describ-
ing the HPV virus as  dirty and  disgusting . Because the
Table 1. Demographic characteristics of participants (n = 27)
virus is sexually transmitted, a few women feared they
would experience stigma, and be judged promiscuous by
Age
their peers, because of having had an HPV test, irrespective
<30 years 4
30 49 years 21 of their test result. One woman (who had a negative result)
e"50 years 2
observed that she would have felt stigma regarding HPV if
Marital status
she had tested positive and was single, but being married
Single 5
protected her from this.
In a relationship, not cohabiting 4
Cohabiting 3
Regret or self-blame
Married 12
Some of the women interviewed who had tested HPV-posi-
Divorced/separated 2
Widowed 1 tive expressed regret in relation to their past and current
Education level
lifestyle choices. For instance, one woman believed that her
Secondary level lower 1
HPV-positive test result was related to a previous genital
Secondary level upper 6
warts diagnosis: she also expressed regret that she currently
Third level nondegree 6
smoked. Another woman expressed regret at having had
Third level degree 14
numerous sexual partners in the past. These women
ª 2014 Royal College of Obstetricians and Gynaecologists 3
O Connor et al.
Table 2. Common emotional responses to HPV infection, testing and/or test results, with illustrative quotes
Sample quotes
Positive emotional Relief  Thank God like it s all done and dusted. . .it s all clear you know. . .there was that nagging doubt
responses that. . .there d be something wrong. (INT27*, HPV-**)
Happiness  I was delighted I got tested and when it came back negative it was like,  oh thank God just park that up
there now for a while. (INT24, HPV-)
Reassurance  It would bring you peace of mind and reassurance [HPV test] because I know I keep saying this
about smear tests but I just feel that it s going to be a waste of time because it s going to show nothing.
(INT28, HPV-)
Negative emotional Shame  I felt really ashamed yea even though. . .I never slept with anybody else oh God, you know.
responses (INT19, HPV+***)
Embarrassment  I was embarrassed and I was like you know like I was really embarrassed and I was kind of oh God, how
did I get this. INT20, HPV+)
Stigma  They don t think oh well it can be from something else or straight away it s like you must be sleeping
around. (INT36, HPV-)
Regret  And I look back on my life and I you know I suppose there s one part that says you know I should have
been more careful. (INT03, HPV+)
Self-blame  First of all I was going  oh God, I shouldn t have slept with all those people. (INT43, HPV+)
Anxiety  Like automatically when I heard the word virus, I was like,  Ok, so you re saying I have something that
might cause me to get cervical cancer. (INT04, HPV+)
Worry  Did I still carry a virus that I could give to someone else? That was one of my concerns. (INT03, HPV+)
 The worry was that it would bring back the. . .symptoms of it again which were the genital warts.
(INT24, HPV-)
*Participant ID number.
**Woman stated she was HPV-negative.
***Woman stated she was HPV-positive.
blamed themselves for their HPV infections, describing tive, HPV-negative or HPV status unknown were preoc-
feelings of responsibility and guilt. Other women wondered cupied with concerns over their abnormal cytology results
who had infected them: some queried whether it was their and related issues: these concerns distracted them from
husband or current sexual partner, but most thought it had HPV and trying to understand the meaning of their test
probably been a previous partner. results. For a very few women, the receipt of an HPV-posi-
tive test result added to their existing worry and concerns
Anxiety or worry
about their abnormal cytology, a CIN diagnosis or treat-
Some of the women interviewed were anxious about the
ment. For instance, one woman had major concerns that
potential implications of being HPV-positive. For example,
she may have cervical cancer due to her abnormal cytology
one woman was worried about infecting someone else and
test result and learning about the link between the HPV
another that having the infection in her system would
virus and cervical cancer exacerbated her fears.
cause past genital warts to recur.
Level of HPV knowledge
Factors influencing negative emotional responses
For most women who reported no negative emotional
Several factors that influenced whether or not these women
response to HPV, it became apparent during their inter-
had a negative emotional reaction to HPV infection, testing
views that they had relatively low levels of knowledge about
and/or test results were identified: (1) concerns over abnor-
HPV infection and testing. In contrast, women who experi-
mal cytology or diagnosis of CIN; (2) level of HPV knowl-
enced negative emotional responses to their HPV test result
edge; (3) awareness of HPV being sexually transmitted; (4)
tended to have greater knowledge.
awareness of HPV being common among sexually active
people; and (5) HPV-related information needs (Figure 1). Awareness of HPV being sexually transmitted
Some of the women interviewed who had experienced
Concerns over abnormal cytology or diagnosis of CIN shame and embarrassment knew that HPV could be trans-
In general, women s anxieties surrounding their abnormal mitted sexually. These women learned about sexual trans-
cytology, a diagnosis of CIN, or treatment outweighed any mission from a health professional, friend or family
concerns about HPV. Most women whether HPV-posi- member, or the internet and were shocked and worried
4 ª 2014 Royal College of Obstetricians and Gynaecologists
Emotional responses to undergoing HPV testing
Concerns over
abnormal
cytology or
diagnosis of
CIN
Information
needs
Level of HPV
surrounding
knowledge
HPV
Adverse
emotional
reactions
Awareness of
Awareness of
HPV being
HPV being
common
sexually
among
transmitted
sexually active
population
1
Arrows indicate the direction in which the factor influenced whether or not women experienced adverse emotional
responses to HPV infection, testing and/or test results. Upwards arrows indicates factor increased chances of an adverse
reaction; downward arrows indicates factor decreased changes of an adverse reaction.
Sample quotes
-Concerns over abnormal cytology or diagnosis of CIN
 I think if you said to somebody,  you have cervical cancer or  you re positive for HPV virus you
know, which one is going to make them go pale, you know that sort of way. (INT11a, HPV b)
-Level of knowledge of HPV
 Yea because I would have never even heard of that [HPV] until she, unless she d explained that she was
testing for it& I mean you know I m not overly worried about it [HPV] really. (INT06, HPV result not
knownc)
-Awareness of HPV being sexually transmitted
 I was really embarrassed and I was kind of oh god, how did I get this, I ve only had two partners and
you know so I was I was a bit gutted. (INT20, HPV+ d)
-Awareness of HPV being common among sexually active population
 How many of the population has it like [ok right] and maybe feel as if I wasn t you know..like reassure
me that I wasn t the only one that had it. (INT20, HPV +)
-Information needs surrounding HPV
 I remember being very confused, even after I read it [HPV information] And thinking,  ok well I know
there s so many different types of it, but I still don t actually understand what it is . Is it something that
you can have for years? I never kind of got any of them kind of questions answered. (INT04, HPV +)
a
Participant ID number.
b
Woman stated that she was HPV-negative.
c
Woman could not recall her test result.
d
Woman stated that she was HPV-positive.
Figure 1. Factors influencing whether or not women experienced negative emotional responses1 to HPV infection, testing and/or test results.
about the negative connotations of testing HPV-positive. In that it was important for medical professionals to assure
contrast, feelings of stigma, and other negative emotions women of how common HPV infections are so as to mini-
such as regret, were not apparent in women who were una- mise anxiety and distress.
ware of the sexual nature of HPV transmission.
Information needs surrounding HPV
Awareness of HPV being common among sexually active For almost every woman interviewed who experienced a neg-
population ative emotional response, it emerged during their interview
Some but not all women interviewed were aware that that they had high HPV information needs. In contrast, for
HPV infection is very common and that the majority of those women for whom the HPV test had minimal emo-
women will become infected in their lifetime. These women tional impact, it was apparent from their interviews that they
less often described negative emotional reactions. Most felt had relatively low HPV information needs.
ª 2014 Royal College of Obstetricians and Gynaecologists 5
O Connor et al.
cial outcomes. Our study was conducted after the introduc-
Discussion
tion of an HPV vaccination programme, which may have
Main findings led to increased HPV awareness and alleviated negative
This study explored the emotional responses, and factors responses. However, HPV knowledge levels among women
influencing negative emotional responses, in women who in the general population remain low despite the introduc-
underwent HPV testing as part of triage for low-grade tion of vaccination programmes.25,26 In terms of more
abnormal cytology or follow up after treatment. Most plausible explanations, in previous studies, women were
women did not experience an emotional reaction. How- asked to think hypothetically about HPV testing:15,16 this
ever, a very few women did experience positive emotional contrasts with our study in which women were actually
reactions. In addition, some women experienced negative tested. Women who undergo HPV testing, especially in the
emotional reactions and various factors influenced this: context of a colposcopy clinic, receive support from health
concerns over abnormal cytology or diagnosis of CIN; level professionals regarding their HPV test and this may mini-
of HPV knowledge; awareness of HPV being sexually trans- mise adverse responses.
mitted; awareness of HPV being common among the sexu- The psychological impact of receiving abnormal cytology
ally active population; and HPV information needs. results and undergoing follow up is well documented.
Women experience distress in the form of fear of cancer,
Strengths and limitations feelings of self-blame, and infertility worries.27 31 In fact,
As far as we are aware, this is the only qualitative study women in our study were preoccupied by their abnormal
involving women who had undergone HPV testing for triage cytology to the extent that these matters dominated adverse
or as part of follow up within routine screening. The study reactions that they might otherwise have had to HPV test-
fills an important gap in the evidence-base relating to ing. Moreover, many women in our study could not recall
women s emotional reactions to HPV testing. A possible lim- their HPV test result, which in itself reveals the extent to
itation is that the study was conducted among women which HPV testing or their test results were unimportant
attending one colposcopy clinic. However, this clinic covers in comparison to their abnormal cytology.
a socio-economically diverse population and is likely to Unlike most previous studies,13,24,32 which focused on
reflect other clinics in Ireland. A maximum variation sample negative emotional responses, we explored both negative
was recruited: both HPV-positive and HPV-negative women and positive responses to HPV testing. Very few women
were interviewed and participants sociodemographic char- expressed positive responses. This is consistent with results
acteristics were diverse. As with all qualitative research, it is of a UK survey, that found testing HPV-negative was not
possible that women who were interested in the topic opted reassuring.12 In our study, women s overriding concerns
to participate. However, this seems unlikely because so few about their abnormal cytology may explain why more
women could recall their results. The interviews aimed to women did not find reassurance in HPV testing, or receiv-
capture responses to HPV both at the time of receipt of the ing an HPV-negative result. The lack of reassurance pro-
result and afterwards. However, women were interviewed vided by HPV testing is worrying as the new HPV testing
some months after their test and any immediate negative protocols offer women less intensive follow up if they test
emotional reactions may have dissipated by the interview to negative.6 8 Unless women perceive a negative HPV test to
the extent that women failed to recall it. Moreover, a limita- be reassuring then these new strategies may fail to help
tion of the qualitative approach is that the relative weight or reduce the psychological burden associated with screening.
importance of themes and subthemes is not always clear. It has been noted, in the context of other medical tests,
However, the credibility of the process is evidenced in the that a negative/normal test result does not provide reassur-
opinions expressed in the data set, suggesting that the themes ance.33,34 According to Leventhal s common-sense model of
identified will be transferrable to other settings. A further illness,33,35 this is due to the representations held by the
strength is that this paper complies with the COREQ check- individual of the  condition and of the particular test.
list for reporting of qualitative studies.22 Research into women s illness representations around cervi-
cal screening is limited.36 Research around the illness repre-
Interpretation sentations of women who have abnormal cytology/CIN,
Our objectives were to investigate women s emotional reac- and their representations of HPV testing in these contexts,
tions to HPV testing and the factors that influenced these. would help to inform development of strategies to maxi-
In terms of the first objective, our qualitative data suggest mise the chances that women who are discharged to less
a lack of strong negative emotional impact. This contrasts intensive follow up feel sufficiently reassured.
with the findings of previous studies, both qualitative and The negative emotional responses of women who did
quantitative.12,23,24 These studies found that receipt of an experience these in this study were consistent with those in
HPV-positive result was associated with adverse psychoso- previous studies.24,25,37 Women s adverse emotional
6 ª 2014 Royal College of Obstetricians and Gynaecologists
Emotional responses to undergoing HPV testing
responses were mainly directed at HPV infection itself, and
Conclusion
not HPV testing. Women feared that they would be judged
as being promiscuous for having a sexually transmitted The findings of this robust qualitative study suggest that
infection. This finding is consistent with other studies that the emotional impact of HPV testing in the context of
have reported associations with feelings of stigma following triage or post-treatment follow up may be modest. The
an HPV diagnosis.16,37,38 It was noteworthy that the lack of strong emotional reaction is the result of women s
women who reported feelings of stigma still experienced concerns surrounding their abnormal cytology taking
these at the time of interview, suggesting that this may be a precedent over all other issues. A range of factors may
more long-term negative consequence of HPV testing. Our influence whether or not women suffer adverse emotional
study confirms that, in the context of triage or post-treat- reactions to HPV testing. These factors, as well as women s
ment follow up, stigma is likely to be one of the most concerns surrounding abnormal cytology, need to be taken
common, and potentially the most damaging, psychological into account when medical professionals are counselling
consequence of testing HPV-positive. women undergoing HPV testing. Although the negative
In terms of positive responses to HPV testing, those emotional impact was minimal, positive emotional
expressed in our study were similar to those reported else- responses were also rare. As the new protocols will return
where.39 However, while some studies found that some women to routine recall if they test negative for HPV, the
women feel reassured or empowered by an HPV-positive lack of reassurance provided by HPV testing could be an
result15,40 we did not find this: only women who were issue for screening programmes. Moreover, clinicians and
HPV-negative had a positive reaction, describing reassurance other medical professionals involved in the follow up of
that they were HPV-negative. These contrasting results may women with abnormal cytology need to be prepared to
be because one study that described empowerment asked support those women who experience negative emotional
women to think hypothetically about how they might feel responses or a lack of reassurance.
about HPV testing15 or because the other study was conducted
in the USA, where the health culture is different to Ireland.40
Disclosure of interests
In common with other studies,25,41,42 it was clear to the
None.
interviewers in this study that women s HPV knowledge
levels were mostly low. HPV knowledge was related to
Contribution to authorship
whether women experienced a negative emotional response:
MO C, JM and LS designed the study. MO C and LC con-
women who had good knowledge more often experienced
ducted the interviews, and planned and undertook the
negative emotional responses. This finding is striking, in so
analysis. MO C wrote the initial and subsequent drafts of
far as, previous research suggests the opposite poor HPV
the manuscript. WP, JM, LS, LC, CM, JJO L contributed to
knowledge exacerbates psychological distress in women
revising the manuscript. All authors have approved the
undergoing HPV testing.39 We have shown, in the same
final manuscript.
study population, that women with greater knowledge had
higher HPV information needs. In addition, women vary
Details of ethics approval
in their information needs and a  one-size fits all approach
The study was approved by the joint Research Ethics Com-
will not work in terms of HPV information provision.
mittee of St James Hospital and the Adelaide and Meath
O Connor M, Costello L, Murphy J, Prendiville W, Martin
Hospital, Dublin (reference: 2010/04/11). Date of approval
CM, O Leary JJ, Sharp L (unpublished observations). These
1 April 2010.
findings present a challenge for screening programmes, sug-
gesting that providing women with (more) information
Funding
could increase information needs and increase the potential
This study was undertaken as part of the CERVIVA
for psychological distress.
research consortium (www.cerviva.ie). CERVIVA is funded
Our findings raise important issues for clinical practice
by the Health Research Board, Ireland (HS-05-09). MOC is
in relation to HPV testing in triage and post-treatment.
an ICE postdoctoral fellow funded by the Health Research
Although our results suggest that adverse responses to HPV
Board (ICE/2011/2).
testing may be infrequent, screening programmes need to
ensure that women s views of cervical screening are not
Acknowledgements
negatively affected by their HPV testing experiences.
We thank the colposcopy clinic staff at the Adelaide and
This will be important to ensure that screening participa-
Meath Hospital, Dublin and the women who participated
tion and follow up does not decline. This is particularly
in the study. We are grateful to Ms Kate Higney and Ms
pertinent given that rates of default from follow up are
Claire O Callaghan for transcribing the interviews.
high.8,43 45
ª 2014 Royal College of Obstetricians and Gynaecologists 7
O Connor et al.
14 Maissi E, Marteau TM, Hankins M, Moss S, Legood R, Gray A. The
Supporting Information
psychological impact of human papillomavirus testing in women
with borderline or mildly dyskaryotic cervical smear test results:
Additional Supporting Information may be found in the
6-month follow-up. Br J Cancer 2005;92:990 4.
online version of this article:
15 McCaffery K, Forrest S, Waller J, Desai M, Szarewski A, Wardle J.
Appendix S1. Semi-structured topic guide for inter- Attitudes towards HPV testing: a qualitative study of beliefs among
& Indian, Pakistani, African-Caribbean and white British women in the
views.
UK. Br J Cancer 2003;88:42 6.
16 Waller J, Marlow LA, Wardle J. The association between knowledge
of HPV and feelings of stigma, shame and anxiety. Sex Transm
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Information provision for screening programmes requires a complex,
person-centred approach
C McCourt
Department of Midwifery and Child Health, City University London, London, UK
Mini commentary on  I don t care whether it s HPV or ABC, I just want to know if I have cancer. Factors
influencing women s emotional responses to undergoing human papillomavirus testing in routine management
in cervical screening: a qualitative study
Why is a study of women s views of a (their explanatory models even if matters most to them and their own
screening programme important, and tacit) and to consider how their selec- lived experience. The findings cannot
why small qualitative studies such as tion of, and approach to, those who simply be extrapolated to an entire
described in this article? The per- use the services might influence the population but need to be used
ceived psychological burden of findings. Although a population sam- thoughtfully by researchers to con-
human papillomavirus (HPV) testing ple is not the aim in a study of this sider what the implications for a pro-
is considered to be a barrier to using scale, an appropriate sample should gramme might be. Additionally, the
HPV testing within cervical cancer be sought to address or explore the findings of a range of small qualitative
screening programmes. Although they questions being asked, and this should studies can be integrated through sys-
lack the scope of larger-scale surveys, be purposively or theoretically tematic review and meta-synthesis.
studies using a qualitative approach framed. In many cases, the aim of a This study raises a number of inter-
can help researchers to unpick the study is clear but the questions that esting points for practitioners to con-
 why and  how of what matters need to be asked are less so, and an sider, such as that an increased level
about screening, to inform policy and open, exploratory approach has par- of knowledge may be linked to
practice. Researchers engaged in this ticular advantages here. It enables the increased anxiety for example,
kind of research need to be clear respondents to frame issues in their knowing that HPV is sexually trans-
about their theoretical framework own terms and in relation to what mitted and associated with cancer
ª 2014 Royal College of Obstetricians and Gynaecologists 9
O Connor et al.
may increase anxiety, whereas more however, the study also illuminated may be influenced by psychological
thorough knowledge (HPV is very the relevance of  context in that considerations such as tested related
common in the population) may alle- women may experience little emo- anxiety but also concepts of stigma or
viate this. This finding echoes wider tional reaction to HPV testing in shame. It would be useful to see stud-
studies of information provision, comparison with the more threaten- ies of longer-term impacts on the
which suggest that information ing impact of a potential cancer diag- women involved, as initial emotional
provision in health care is often par- nosis. More specific to some forms of impact may be unavoidable with cer-
tially, inconsistently or inequitably screening, the study also indicated tain forms of screening. Additionally,
provided, and may often be too that some women experienced a sense studies can be conducted building on
superficial to address women s ques- of shame and stigma related to HPV this work to frame question design
tions and worries effectively. The diagnosis. This is potentially impor- with larger and more diverse groups
study also highlighted some women s tant for design of screening pro- of women.
lack of reassurance from negative grammes in weighing up the benefits
results, an issue that has been found or costs and risks. For example, Disclosure of interests
in wider literature on the psychologi- whether they should be focused in a There are no conflicts of interest to
&
cal impact of screening. Conversely, targeted or more universal fashion disclose.
10 ª 2014 Royal College of Obstetricians and Gynaecologists