‘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

National Cancer Registry Ireland, Cork Airport Business Park, Cork, Ireland

b

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

negative reactions, among women undergoing human
papillomavirus (HPV) tests in routine clinical practice.

Design

Exploratory qualitative interview study.

Setting

A large busy colposcopy clinic in a Dublin hospital.

Sample

Twenty-seven women who had had an HPV DNA test in

the previous 6 months following one or more low-grade cytology
tests or treatment for cervical intraepithelial neoplasia (CIN).

Methods

In-depth semi-structured interviews were conducted.

Interview transcripts were analysed using a thematic approach
(Framework Analysis).

Main outcome measures

Women’s emotional responses and

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

emotional responses related to HPV infection rather than testing.
Factors that influenced whether women experienced negative
emotional responses were: concerns over abnormal cytology or
diagnosis of CIN; HPV knowledge; awareness of HPV being
sexually transmitted; awareness of HPV prevalence; and HPV
information needs. Women’s concerns about abnormal cytology/
CIN dominated all other issues.

Conclusions

These qualitative data suggest that in the context of

follow up of abnormal cytology or treatment for CIN, the
emotional impact of HPV testing may be modest: women’s
primary concerns at this time relate to abnormal cytology/CIN.

Keywords

Abnormal cytology, cervical intraepithelial neoplasia,

cervical screening, emotional responses, human papillomavirus
testing, qualitative.

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.

Introduction

The causal relationship between certain strains of human
papillomavirus (HPV) and cervical cancer

1

is transforming

cervical cancer screening strategies. It is widely anticipated
that screening for cervical cancer in the future will involve

testing for infection with high-risk HPV types, instead of
conventional cervical cytology,

2

–4

but primary HPV screen-

ing will not be implemented until there is greater clarity
around appropriate follow up of women who test HPV-po-
sitive. In the meantime, HPV testing is being incorporated
into screening in other ways. It is being used for co-testing

1

ª 2014 Royal College of Obstetricians and Gynaecologists

DOI: 10.1111/1471-0528.12741

www.bjog.org

with cytology in some settings,

5

has recently been imple-

mented for triage of women with low-grade abnormal cer-
vical cytology in England;

6

and has been incorporated into

the follow-up protocol for women who have been treated
for cervical intraepithelial neoplasia (CIN) in various coun-
tries.

6

–8

Existing evidence suggests that HPV testing, although

clinically effective and most likely cost-effective,

9,10

may

result in a significant psychological burden for women. A
recent systematic review concluded that women have con-
cerns about HPV testing, and have worries surrounding the
disclosure of having a sexually transmitted infection.

11

Spe-

cifically, quantitative research in the UK found that receipt
of an HPV-positive result may be associated with a range
of negative emotional consequences including distress and
anxiety;

12

–14

moreover, receipt of a negative HPV test result

was not reassuring.

12

There are several limitations in the available evidence

regarding women’s emotional responses to HPV testing.
No studies have yet investigated women’s emotional
responses to HPV testing in the context of the new HPV
protocols. The studies included in the systematic review

11

were conducted within clinical trials, or in the USA where
there is no organised cervical screening programme. Two
studies asked women to hypothetically think how they
would feel if they underwent HPV testing or if they tested
positive for HPV

15,16

and the findings may not reflect the

emotional responses of women tested routinely within
organised screening. Studies mainly investigated the nega-
tive impact of HPV testing; little is known about positive
impacts (e.g. reassurance) or what influences whether a
woman has an emotional response. Moreover, the intro-
duction of HPV vaccination programmes may have chan-
ged women’s awareness of HPV and this could impact on
women’s reactions to HPV testing.

17

In order to extend the existing evidence-base, we con-

ducted exploratory in-depth interviews among women who
had had an HPV test as part of routine follow up after an
abnormal cytology test or treatment for CIN. Our objec-
tives were to (1) explore women’s emotional reactions
(both positive and negative) to undergoing HPV testing
and (2) identify factors that influence negative emotional
responses to HPV testing.

Methods

Setting

The study was conducted in Ireland in 2011. Since 2008, a
national cervical screening programme, CervicalCheck, has
been implemented, offering free cervical cytology tests to
women aged 25

–60 years.

18

In 2010, a school-based

national HPV vaccination programme (nonmandatory) was
initiated targeting girls aged 12

–13 years, with catch-up for

those up to 18 years.

19

In 2012, testing for high-risk HPV

types was routinely introduced for post-treatment follow
up of women treated for CIN 2/3 in colposcopy clinics
affiliated with CervicalCheck.

Participants and recruitment

Colposcopy clinic administrative staff in a public hospital
affiliated with CervicalCheck identified the 200 women
who had most recently had an HPV DNA test in the previ-
ous 6 months following one or more low-grade cytology
tests or treatment for CIN. Women who were pregnant at
the time of the HPV test were excluded (those who were
pregnant at the time of the interview were eligible to take
part). Women were stratified by the test result (high-risk
HPV-positive/HPV-negative), and sent a letter signed by
the lead clinician (WP), inviting them to take part. Inter-
ested women returned a reply slip to the research team,
and an interviewer (MOC and LC) contacted them to
arrange an interview.

The joint Research Ethics Committee of St James Hospi-

tal and the Adelaide and Meath Hospital, Dublin approved
the study. All participants provided written informed con-
sent before being interviewed.

Interviews

In-depth interviews were carried out in the woman’s home
or at another convenient location. A semi-structured topic
guide (see Supporting information, Appendix S1), devel-
oped from literature review, guided the interviews; this was
allowed to evolve as interviews progressed. Core issues cov-
ered in the topic guide included: screening history; under-
standing of HPV and abnormal cytology results; having the
HPV test; emotional impact of the test result; and informa-
tion needs. Questions were somewhat specific to whether
the woman had a positive or negative test result. Examples
of questions asked about emotional responses to the test
result include: ‘How did you feel at the time (of the test
result)?’ and ‘How did you feel when you learned your
HPV test result was negative?’ HPV and its association with
sexual activity was not explicitly discussed in the interview
unless raised by the participant. Interviews were audio-re-
corded with the woman’s consent and ranged from 25 to
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
under investigation had been reported by the interviewees
during the last three interviews.

20

Analysis

Interviews were transcribed verbatim and anonymised.
Concurrent data collection and analysis allowed for issues
that arose in earlier interviews to inform the content of
subsequent interviews. The interviewers independently

2

ª 2014 Royal College of Obstetricians and Gynaecologists

O’Connor et al.

reviewed and coded transcripts of the first two interviews,
discussed these to arrive at consensus, and combined the
codes into families. The codes were applied to the rest of
the data set and the code lists were refined and developed
as the analysis progressed. The interviewers held regular
discussions to discuss uncertainties and reach consensus on
all aspects of the data. Thematic analysis was undertaken
using the Framework Approach to organise the data and
identify emerging themes.

21

This involves the development

of a matrix, with themes or subthemes comprising the col-
umns, and cases the rows, of the matrix. Data were sum-
marised

within

the

framework

matrix

to

facilitate

systematic organisation of the data and examination of
themes and cases. Associations, relationships and explana-
tions within the data were explored using the framework.
Results reported here relate to emotional responses; find-
ings in relation to women’s information needs will be
reported elsewhere. O’Connor M, Costello L, Murphy J,
Prendiville W, Martin CM, O’Leary JJ, Sharp L (unpub-
lished observations). Direct quotes that illustrate partici-
pants’ narratives and are representative of themes and
subthemes relating to emotional responses to HPV testing
have been presented. Each quote is followed by the relevant
participant ID number (INT) and what the woman
believed her HPV test result was (HPV

+, HPV , or HPV

result not known for women who could not recall their test
results).

Results

The sociodemographic characteristics of the 27 women
interviewed are shown in Table 1. Women ranged in age
from 26 to 61 years (median 35 years). Six women stated
that they had tested HPV-positive, 11 that they were
HPV-negative and ten could not recall their test result.

Two major themes were identified: (1) emotional responses
and (2) factors influencing negative emotional responses.

Emotional responses

Most of the women interviewed did not describe any emo-
tional reactions: this was irrespective of their HPV test
result. Only nine women reported an emotional response
to HPV infection testing or receipt of test results. The
emotional reactions comprised: (1) positive emotional
responses, which included relief, happiness or reassurance
and (2) negative emotional responses, which included (a)
shame, embarrassment or stigma (which were the most
common negative reactions), (b) regret or self-blame and
(c) anxiety or worry (Table 2). Among women who experi-
enced negative emotional reactions, their response was pre-
dominately related to HPV infection rather than to HPV
testing per se.

Relief, happiness or reassurance
For a very few women, receipt of an HPV-negative test
result was associated with feelings of relief or happiness.
For instance, one woman was ‘delighted’ she had been
tested and felt that it was one less thing for her to worry
about. In addition, a very few women expressed reassur-
ance in relation to undergoing testing per se. For example,
one woman, who could not recall her test result, felt that it
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
reassuring for women.

Shame, embarrassment or stigma
The shame and embarrassment expressed by some of the
women interviewed resulted from HPV being sexually
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
virus is sexually transmitted, a few women feared they
would experience stigma, and be judged promiscuous by
their peers, because of having had an HPV test, irrespective
of their test result. One woman (who had a negative result)
observed that she would have felt stigma regarding HPV if
she had tested positive and was single, but being married
protected her from this.

Regret or self-blame
Some of the women interviewed who had tested HPV-posi-
tive expressed regret in relation to their past and current
lifestyle choices. For instance, one woman believed that her
HPV-positive test result was related to a previous genital
warts diagnosis: she also expressed regret that she currently
smoked. Another woman expressed regret at having had
numerous sexual partners in the past. These women

Table 1. Demographic characteristics of participants (n

= 27)

Age
<30 years

4

30

–49 years

21

≥50 years

2

Marital status
Single

5

In a relationship, not cohabiting

4

Cohabiting

3

Married

12

Divorced/separated

2

Widowed

1

Education level
Secondary level

—lower

1

Secondary level

—upper

6

Third level

—nondegree

6

Third level

—degree

14

3

ª 2014 Royal College of Obstetricians and Gynaecologists

Emotional responses to undergoing HPV testing

blamed themselves for their HPV infections, describing
feelings of responsibility and guilt. Other women wondered
who had infected them: some queried whether it was their
husband or current sexual partner, but most thought it had
probably been a previous partner.

Anxiety or worry
Some of the women interviewed were anxious about the
potential implications of being HPV-positive. For example,
one woman was worried about infecting someone else and
another that having the infection in her system would
cause past genital warts to recur.

Factors influencing negative emotional responses

Several factors that influenced whether or not these women
had a negative emotional reaction to HPV infection, testing
and/or test results were identified: (1) concerns over abnor-
mal cytology or diagnosis of CIN; (2) level of HPV knowl-
edge; (3) awareness of HPV being sexually transmitted; (4)
awareness of HPV being common among sexually active
people; and (5) HPV-related information needs (Figure 1).

Concerns over abnormal cytology or diagnosis of CIN
In general, women’s anxieties surrounding their abnormal
cytology, a diagnosis of CIN, or treatment outweighed any
concerns about HPV. Most women

—whether HPV-posi-

tive, HPV-negative or HPV status unknown

—were preoc-

cupied with concerns over their abnormal cytology results
and related issues: these concerns distracted them from
HPV and trying to understand the meaning of their test
results. For a very few women, the receipt of an HPV-posi-
tive test result added to their existing worry and concerns
about their abnormal cytology, a CIN diagnosis or treat-
ment. For instance, one woman had major concerns that
she may have cervical cancer due to her abnormal cytology
test result and learning about the link between the HPV
virus and cervical cancer exacerbated her fears.

Level of HPV knowledge
For most women who reported no negative emotional
response to HPV, it became apparent during their inter-
views that they had relatively low levels of knowledge about
HPV infection and testing. In contrast, women who experi-
enced negative emotional responses to their HPV test result
tended to have greater knowledge.

Awareness of HPV being sexually transmitted
Some of the women interviewed who had experienced
shame and embarrassment knew that HPV could be trans-
mitted sexually. These women learned about sexual trans-
mission from a health professional, friend or family
member, or the internet and were shocked and worried

Table 2. Common emotional responses to HPV infection, testing and/or test results, with illustrative quotes

Sample quotes

Positive emotional

responses

Relief

‘Thank God like it’s all done and dusted

. . .it’s all clear you know. . .there was that nagging doubt

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

responses

Shame

‘I felt really ashamed yea even though

. . .I never slept with anybody else oh God, you know.’

(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
Anxiety

‘First of all I was going “oh God, I shouldn’t have slept with all those people.’ (INT43, HPV

+)

‘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.

4

ª 2014 Royal College of Obstetricians and Gynaecologists

O’Connor et al.

about the negative connotations of testing HPV-positive. In
contrast, feelings of stigma, and other negative emotions
such as regret, were not apparent in women who were una-
ware of the sexual nature of HPV transmission.

Awareness of HPV being common among sexually active
population
Some

—but not all—women interviewed were aware that

HPV infection is very common and that the majority of
women will become infected in their lifetime. These women
less often described negative emotional reactions. Most felt

that it was important for medical professionals to assure
women of how common HPV infections are so as to mini-
mise anxiety and distress.

Information needs surrounding HPV
For almost every woman interviewed who experienced a neg-
ative emotional response, it emerged during their interview
that they had high HPV information needs. In contrast, for
those women for whom the HPV test had minimal emo-
tional impact, it was apparent from their interviews that they
had relatively low HPV information needs.

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.’ (INT11

a

, 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
known

c

)

-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.

Concerns over

abnormal

cytology or

diagnosis of

CIN

Information

needs

surrounding

HPV

Awareness of

HPV being

sexually

transmitted

Awareness of

HPV being

common

among

sexually active

population

Level of HPV

knowledge

Adverse

emotional

reactions

Figure 1. Factors influencing whether or not women experienced negative emotional responses

1

to HPV infection, testing and/or test results.

5

ª 2014 Royal College of Obstetricians and Gynaecologists

Emotional responses to undergoing HPV testing

Discussion

Main findings

This study explored the emotional responses, and factors
influencing negative emotional responses, in women who
underwent HPV testing as part of triage for low-grade
abnormal cytology or follow up after treatment. Most
women did not experience an emotional reaction. How-
ever, a very few women did experience positive emotional
reactions. In addition, some women experienced negative
emotional reactions and various factors influenced this:
concerns over abnormal cytology or diagnosis of CIN; level
of HPV knowledge; awareness of HPV being sexually trans-
mitted; awareness of HPV being common among the sexu-
ally active population; and HPV information needs.

Strengths and limitations

As far as we are aware, this is the only qualitative study
involving women who had undergone HPV testing for triage
or as part of follow up within routine screening. The study
fills an important gap in the evidence-base relating to
women’s emotional reactions to HPV testing. A possible lim-
itation is that the study was conducted among women
attending one colposcopy clinic. However, this clinic covers
a socio-economically diverse population and is likely to
reflect other clinics in Ireland. A maximum variation sample
was recruited: both HPV-positive and HPV-negative women
were interviewed and participants’ sociodemographic char-
acteristics were diverse. As with all qualitative research, it is
possible that women who were interested in the topic opted
to participate. However, this seems unlikely because so few
women could recall their results. The interviews aimed to
capture responses to HPV both at the time of receipt of the
result and afterwards. However, women were interviewed
some months after their test and any immediate negative
emotional reactions may have dissipated by the interview to
the extent that women failed to recall it. Moreover, a limita-
tion of the qualitative approach is that the relative weight or
importance of themes and subthemes is not always clear.
However, the credibility of the process is evidenced in the
opinions expressed in the data set, suggesting that the themes
identified will be transferrable to other settings. A further
strength is that this paper complies with the COREQ check-
list for reporting of qualitative studies.

22

Interpretation

Our objectives were to investigate women’s emotional reac-
tions to HPV testing and the factors that influenced these.
In terms of the first objective, our qualitative data suggest
a lack of strong negative emotional impact. This contrasts
with the findings of previous studies, both qualitative and
quantitative.

12,23,24

These studies found that receipt of an

HPV-positive result was associated with adverse psychoso-

cial outcomes. Our study was conducted after the introduc-
tion of an HPV vaccination programme, which may have
led to increased HPV awareness and alleviated negative
responses. However, HPV knowledge levels among women
in the general population remain low despite the introduc-
tion of vaccination programmes.

25,26

In terms of more

plausible explanations, in previous studies, women were
asked to think hypothetically about HPV testing:

15,16

this

contrasts with our study in which women were actually
tested. Women who undergo HPV testing, especially in the
context of a colposcopy clinic, receive support from health
professionals regarding their HPV test and this may mini-
mise adverse responses.

The psychological impact of receiving abnormal cytology

results and undergoing follow up is well documented.
Women experience distress in the form of fear of cancer,
feelings of self-blame, and infertility worries.

27

–31

In fact,

women in our study were preoccupied by their abnormal
cytology to the extent that these matters dominated adverse
reactions that they might otherwise have had to HPV test-
ing. Moreover, many women in our study could not recall
their HPV test result, which in itself reveals the extent to
which HPV testing or their test results were unimportant
in comparison to their abnormal cytology.

Unlike most previous studies,

13,24,32

which focused on

negative emotional responses, we explored both negative
and positive responses to HPV testing. Very few women
expressed positive responses. This is consistent with results
of a UK survey, that found testing HPV-negative was not
reassuring.

12

In our study, women’s overriding concerns

about their abnormal cytology may explain why more
women did not find reassurance in HPV testing, or receiv-
ing an HPV-negative result. The lack of reassurance pro-
vided by HPV testing is worrying as the new HPV testing
protocols offer women less intensive follow up if they test
negative.

6

–8

Unless women perceive a negative HPV test to

be reassuring then these new strategies may fail to help
reduce the psychological burden associated with screening.

It has been noted, in the context of other medical tests,

that a negative/normal test result does not provide reassur-
ance.

33,34

According to Leventhal’s common-sense model of

illness,

33,35

this is due to the representations held by the

individual of the ‘condition’ and of the particular test.
Research into women’s illness representations around cervi-
cal screening is limited.

36

Research around the illness repre-

sentations of women who have abnormal cytology/CIN,
and their representations of HPV testing in these contexts,
would help to inform development of strategies to maxi-
mise the chances that women who are discharged to less
intensive follow up feel sufficiently reassured.

The negative emotional responses of women who did

experience these in this study were consistent with those in
previous

studies.

24,25,37

Women’s

adverse

emotional

6

ª 2014 Royal College of Obstetricians and Gynaecologists

O’Connor et al.

responses were mainly directed at HPV infection itself, and
not HPV testing. Women feared that they would be judged
as being promiscuous for having a sexually transmitted
infection. This finding is consistent with other studies that
have reported associations with feelings of stigma following
an HPV diagnosis.

16,37,38

It was noteworthy that the

women who reported feelings of stigma still experienced
these at the time of interview, suggesting that this may be a
more long-term negative consequence of HPV testing. Our
study confirms that, in the context of triage or post-treat-
ment follow up, stigma is likely to be one of the most
common, and potentially the most damaging, psychological
consequence of testing HPV-positive.

In terms of positive responses to HPV testing, those

expressed in our study were similar to those reported else-
where.

39

However, while some studies found that some

women feel reassured or empowered by an HPV-positive
result

15,40

we did not find this: only women who were

HPV-negative had a positive reaction, describing reassurance
that they were HPV-negative. These contrasting results may
be because one study that described empowerment asked
women to think hypothetically about how they might feel
about HPV testing

15

or because the other study was conducted

in the USA, where the health culture is different to Ireland.

40

In common with other studies,

25,41,42

it was clear to the

interviewers in this study that women’s HPV knowledge
levels were mostly low. HPV knowledge was related to
whether women experienced a negative emotional response:
women who had good knowledge more often experienced
negative emotional responses. This finding is striking, in so
far as, previous research suggests the opposite

—poor HPV

knowledge exacerbates psychological distress in women
undergoing HPV testing.

39

We have shown, in the same

study population, that women with greater knowledge had
higher HPV information needs. In addition, women vary
in their information needs and a ‘one-size fits all’ approach
will not work in terms of HPV information provision.
O’Connor M, Costello L, Murphy J, Prendiville W, Martin
CM, O’Leary JJ, Sharp L (unpublished observations). These
findings present a challenge for screening programmes, sug-
gesting that providing women with (more) information
could increase information needs and increase the potential
for psychological distress.

Our findings raise important issues for clinical practice

in relation to HPV testing in triage and post-treatment.
Although our results suggest that adverse responses to HPV
testing may be infrequent, screening programmes need to
ensure that women’s views of cervical screening are not
negatively affected by their HPV testing experiences.
This will be important to ensure that screening participa-
tion and follow up does not decline. This is particularly
pertinent given that rates of default from follow up are
high.

8,43

–45

Conclusion

The findings of this robust qualitative study suggest that
the emotional impact of HPV testing

—in the context of

triage or post-treatment follow up

—may be modest. The

lack of strong emotional reaction is the result of women’s
concerns surrounding their abnormal cytology taking
precedent over all other issues. A range of factors may
influence whether or not women suffer adverse emotional
reactions to HPV testing. These factors, as well as women’s
concerns surrounding abnormal cytology, need to be taken
into account when medical professionals are counselling
women undergoing HPV testing. Although the negative
emotional

impact

was

minimal,

positive

emotional

responses were also rare. As the new protocols will return
women to routine recall if they test negative for HPV, the
lack of reassurance provided by HPV testing could be an
issue for screening programmes. Moreover, clinicians and
other medical professionals involved in the follow up of
women with abnormal cytology need to be prepared to
support those women who experience negative emotional
responses or a lack of reassurance.

Disclosure of interests

None.

Contribution to authorship

MO’C, JM and LS designed the study. MO’C and LC con-
ducted the interviews, and planned and undertook the
analysis. MO’C wrote the initial and subsequent drafts of
the manuscript. WP, JM, LS, LC, CM, JJO’L contributed to
revising the manuscript. All authors have approved the
final manuscript.

Details of ethics approval

The study was approved by the joint Research Ethics Com-
mittee of St James Hospital and the Adelaide and Meath
Hospital, Dublin (reference: 2010/04/11). Date of approval
1 April 2010.

Funding

This study was undertaken as part of the CERVIVA
research consortium (www.cerviva.ie). CERVIVA is funded
by the Health Research Board, Ireland (HS-05-09). MOC is
an ICE postdoctoral fellow funded by the Health Research
Board (ICE/2011/2).

Acknowledgements

We thank the colposcopy clinic staff at the Adelaide and
Meath Hospital, Dublin and the women who participated
in the study. We are grateful to Ms Kate Higney and Ms
Claire O’Callaghan for transcribing the interviews.

7

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Emotional responses to undergoing HPV testing

Supporting Information

Additional Supporting Information may be found in the
online version of this article:

Appendix S1. Semi-structured topic guide for inter-

views.

&

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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
screening programme important, and
why small qualitative studies such as
described in this article? The per-
ceived

psychological

burden

of

human papillomavirus (HPV) testing
is considered to be a barrier to using
HPV testing within cervical cancer
screening programmes. Although they
lack the scope of larger-scale surveys,
studies using a qualitative approach
can help researchers to unpick the
‘why’ and ‘how’ of what matters
about screening, to inform policy and
practice. Researchers engaged in this
kind of research need to be clear
about their theoretical framework

(their explanatory models

—even if

tacit) and to consider how their selec-
tion of, and approach to, those who
use the services might influence the
findings. Although a population sam-
ple is not the aim in a study of this
scale, an appropriate sample should
be sought to address or explore the
questions being asked, and this should
be

purposively

or

theoretically

framed. In many cases, the aim of a
study is clear but the questions that
need to be asked are less so, and an
open, exploratory approach has par-
ticular advantages here. It enables the
respondents to frame issues in their
own terms and in relation to what

matters most to them and their own
lived experience. The findings cannot
simply be extrapolated to an entire
population but need to be used
thoughtfully by researchers to con-
sider what the implications for a pro-
gramme might be. Additionally, the
findings of a range of small qualitative
studies can be integrated through sys-
tematic review and meta-synthesis.

This study raises a number of inter-

esting points for practitioners to con-
sider, such as that an increased level
of knowledge may be linked to
increased

anxiety

—for

example,

knowing that HPV is sexually trans-
mitted and associated with cancer

9

ª 2014 Royal College of Obstetricians and Gynaecologists

Emotional responses to undergoing HPV testing

may increase anxiety, whereas more
thorough knowledge (HPV is very
common in the population) may alle-
viate this. This finding echoes wider
studies

of

information

provision,

which

suggest

that

information

provision in health care is often par-
tially, inconsistently or inequitably
provided, and may often be too
superficial to address women’s ques-
tions and worries effectively. The
study also highlighted some women’s
lack of reassurance from negative
results, an issue that has been found
in wider literature on the psychologi-
cal impact of screening. Conversely,

however, the study also illuminated
the relevance of ‘context’ in that
women may experience little emo-
tional reaction to HPV testing in
comparison with the more threaten-
ing impact of a potential cancer diag-
nosis. More specific to some forms of
screening, the study also indicated
that some women experienced a sense
of shame and stigma related to HPV
diagnosis. This is potentially impor-
tant for design of screening pro-
grammes in weighing up the benefits
or costs and risks. For example,
whether they should be focused in a
targeted or more universal fashion

may be influenced by psychological
considerations such as tested

–related

anxiety but also concepts of stigma or
shame. It would be useful to see stud-
ies of longer-term impacts on the
women involved, as initial emotional
impact may be unavoidable with cer-
tain forms of screening. Additionally,
studies can be conducted building on
this work to frame question design
with larger and more diverse groups
of women.

Disclosure of interests

There are no conflicts of interest to
disclose.

&

10

ª 2014 Royal College of Obstetricians and Gynaecologists

O’Connor et al.