ARTICLE IN PRESS

Social Science & Medicine 64 (2007) 1704–1718

www.elsevier.com/locate/socscimed

Constructions of sexuality and intimacy after cancer:

Patient and health professional perspectives
Amanda Jane Hordern, Annette F. Street
La Trobe University, Bundoora, Victoria, Australia
Available online 29 January 2007

Abstract

With an increasing emphasis on the provision of psychosocial support for patients in cancer and palliative care, an
emerging body of literature has highlighted the importance of providing the opportunity for patients to discuss issues of
intimacy and sexuality with their health professionals. Very little is known about why health professionals struggle with
this level of communication in clinical practice. The aim of this paper is to discuss constructions of intimacy and sexuality
in cancer and palliative care from patient and health professional perspectives. A three stage reflexive inquiry was used to
systematically and critically analyse data from semi-structured interviews (n ¼ 82), a textual analysis of 33 national and
international clinical practice guidelines and participant feedback at 15 forums where preliminary research findings were
presented to patients and health professionals in cancer and palliative care. The study was conducted across one public
teaching hospital in Australia from 2002 to 2005. Data were further analysed drawing upon the work of Giddens on
reflexivity, intimacy and sexuality, to reveal that the majority of health professionals embraced a less reflexive, more
medicalised approach about patient issues of intimacy and sexuality after cancer. This was in stark contrast to the
expectations of patients. Cancer had interrupted their sense of self, including how they experienced changes to intimate and
sexual aspects of their lives, irrespective of their age, gender, culture, type of cancer or partnership status. Key findings
from this project reveal incongruence between the way patients and health professionals constructed sexuality and
intimacy. Structures which govern cancer and palliative care settings perpetrated the disparity and made it difficult for
health professionals to regard patients as people with sexual and intimate needs or to express their own vulnerability when
communicating about these issues in the clinical practice setting. A degree of reflexivity about personal and professional
constructions of sexuality and intimacy was required for health professionals to confidently challenge these dominant
forces and engage in the type of communication patients were seeking.
r 2007 Elsevier Ltd. All rights reserved.

Keywords: Communication; Reflexivity; Australia; Sexuality; Intimacy; Cancer; Palliative care

Introduction

Background

Corresponding author. Tel.: +61 3 9635 5129; Health care is now practised in contemporary
fax: +61 39496 4450.
western societies saturated with images of sexuality
E-mail addresses: [email protected] and intimacy to advertise and market products using
(A.J. Hordern), [email protected] (A.F. Street). every conceivable form of media and communication

0277-9536/$ - see front matter r 2007 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2006.12.012
 ARTICLE IN PRESS
A.J. Hordern, A.F. Street / Social Science & Medicine 64 (2007) 1704–1718 1705

technology available. Health consumers are con- would go to a doctor and wait to be told what to do
fronted with provocative messages of sexuality on next (Frank, 1995).
billboards across street corners, buildings and bus This type of ‘‘de-normalisation’’ of everyday
stops, whilst lurid text messages scroll across the events (Lash, 2003, p. 53), highlights the capacity
screen of mobile phones or computers as we collect of the individual to question their relationship with
our electronic mail. These marketing strategies are their health, their body, emotions and social world—
overwhelmingly superficial, with a fixation on and the ways in which they have accounted for their
wrinkle-free, glamorous and penetrative sex, from experiences (Giddens, 1992). Examples of modern
which the frail, ugly, sick, elderly or debilitated are day reflexivity liberate expressions of sexuality and
generally excluded. Deeply embedded in many of intimacy from a pre-determined relationship with
these images are statements about contemporary reproduction. Non-fixed gender roles, relationships
sexuality and modern day intimacy that leave their and technological developments in contraception
mark on health care consumers. As a consequence, and abortion have all contributed to the remodelling
many relationships between patients and health of intimacy and sexuality across a life span and in
professionals have also undergone a radical trans- response to individual desires and life experiences
formation, so that the basic tenets of traditional (Giddens, 1992). Captured in the term ‘plastic
communication between patients and health profes- sexuality’ (Giddens, 1992; Giddens & Pierson,
sionals have frequently been challenged (Butler, 1998), the malleable nature of relationships, sexu-
Banfield, Terry, & Allen, 1998; Hordern & Currow, ality and intimacy in contemporary western society
2003; Kissane, White, Cooper, & Vitetta, 2004; has impacted on individual and social constructions
Stead, Brown, Fallowfield, & Selby, 2003). Today’s of sexuality and intimacy, stretching or slicing
patients face a myriad of choices as they navigate through traditional age, gender, religious, culture
their way through complex health systems. They and partnership boundaries. Health care settings are
make choices as to whether they will enter the not immune to the effects of plastic sexuality.
private or public health system or whether they Increasingly, health care professionals are exhorted
receive their care in a hospital, as an outpatient or in to move beyond a focus on survival and recognise
their home. Added to these decisions, patients are and address the ongoing biopsychosocial needs of
increasingly provided with the option of receiving the people living with and affected by cancer.
their cancer treatment from a medical specialist, a In 2003, for the first time in Australia, the
specialist nurse, a general practitioner or a ‘specia- national psychosocial guidelines for the care of
list’ in natural therapies. Patients are also encour- people with cancer provided key indicators and
aged to seek second medical opinions, formulate a health promoting strategies for adults experiencing
list of questions and bring a partner or support alteration in sexual function after a cancer diagnosis
person to promote self comfort and confidence (National Breast Cancer Centre and National
throughout the consultation (National Breast Can- Cancer Control Initiative, 2003). An emerging body
cer Centre, 2004; National Breast Cancer Centre of literature (Butler et al., 1998; Chamberlain
and National Cancer Control Initiative, 2003). Wilmoth, 2001; Holmberg, Scott, Alexy, & Fife,
Giddens (1993), captures some of these modern 2001; Kissane et al., 2004; Lemieux, Kaiser, Pereira,
changes when he writes about reflexivity, intimacy & Meadows, 2004; Schover, 2005; Stead, Brown,
and sexuality, citing reflexivity as the defining Fallowfield, & Selby, 2002; Watkins, Bruner, &
feature of late modernity. Reflexivity becomes the Boyd, 1998) further supports the importance of
‘self confrontation’ of all that we are forced to discussing issues of intimacy and sexuality with
make choices about, and in this ‘destabilising’ patients in cancer and palliative care. Although
capacity, where more traditional rules and struc- these writers agree with the need to address
tures have been eroded by individual choice, sexuality, and in some cases provide strategies to
reflexivity represents increasing independence of do this, to date there has been no clear acknowl-
agency from structure (Giddens, 1993; Lash, edgement about the place of reflexivity and plastic
2003). Stated in another way, modern day living sexuality in these health care debates. Nor have the
presumes the existence of non-linear systems and it implications of changing socio-cultural expectations
is ‘‘the ‘chaos’ or noise of the unintended con- been explored for patients and health professionals
sequences that leads to system dis-equilibrium’’ attempting to communicate on these topics in
(Lash, 2003, p. 50). In a less reflexive era, a patient cancer and palliative care contexts.
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Instead, an underlying assumption is evident that not discuss sexual matters—from the patient and
if a health professional is told to communicate with health professional perspectives. In this case the
patients about issues of intimacy and sexuality, they patients were women with ovarian cancer (Stead
will just get on and do that. This assumption fails to et al., 2002, 2003; Stead, Fallowfield, Brown, &
pay tribute to the dominant structures which govern Selby, 2001). The researchers argued that even
health care, dictating how and when to speak to a though the patients wished to communicate with
patient and what shall remain taboo. Added to this medical staff about sexual changes they were
is a lack of regard for the way sexuality and experiencing, health professionals generally avoided
intimacy are constructed by individual patients and the topic due to time constraints, embarrassment
health professionals, as well as the late modern and lack of experience. The socio-cultural construc-
changes in roles and responsibilities anticipated by tions of patient sexuality are not referred to in this
patients and health professionals in the context of study or throughout other discussions exploring
communication within health care. patient sexuality and intimacy after cancer (Kissane
Often implicit and largely invisible in cancer and et al., 2004; Sunquist & Yee, 2003), where the
palliative care, these dominant constructions pro- communication responsibility is left with the health
mote an emphasis in the literature on medicalised or professional, irrespective of the confounding struc-
functional aspects of patient sexuality, reducing it to tural and cultural obstacles within the clinical
measuring or quantifying alterations in fertility, practice setting. To date, a framework to assist the
libido, erectile, or menopausal status as a result of health professional to challenge many of the
cancer treatment (Bergmak, Avall-Lundqvist, Dick- medicalised assumptions about patient sexuality
man, Henningsohn, & Steineck, 1999; Ganz, 1997; and intimacy is lacking. The aim of this paper is
Paridaens, 1993; Rice, 2000; Young-McCaughan, to present constructions of intimacy and sexuality in
1996). Medicalised language used by authors who cancer and palliative care, from the patient and
write about ‘sexual problems’ (Ramage, 1998), health professional perspectives, in an attempt to
‘sexual dysfunction’ (Barni & Mondin, 1997; Rogers gain insight into the shaping of this taboo in clinical
& Kristjanson, 2002) or ‘sexuality’ (Meyerowitz, practice.
Desmond, Rowland, Wyatt, & Ganz, 1999) further
emphasises that the terms ‘sex’ or ‘sexuality’ are Method
inextricably linked with sexual intercourse.
Also evident are ageist attitudes of health This study used a three stage reflexive inquiry
professionals, evident in the lack of research being where data analysis and conceptual mapping
directed at older people’s experience of sexuality in progressed concurrently and influenced the emer-
the face of life limiting illness (Lemieux et al., 2004), gent understandings. Positioned within the scope of
even though cancer is a disease of the older critical approaches to qualitative research, reflexive
population (Silliman, 1996; Silliman, Troyan, Gua- inquiry enables researchers to engage in a deliberate
dagnoli, Kaplan, & Greenfield, 1997). The domi- and systematic approach to the emerging data
nant belief pervading this health care culture is that analysis and response of others to this data
the elderly lose interest in sexual issues because of (Cuncliffe, 2003). In particular, this research meth-
advancing age and biological changes (Gott & od was chosen to capture the competing responses
Hinchliff, 2003; Murkies, 1996; Shell & Smith, of participants to the research question, as well as
1994). Compounding these medicalised assumptions provide a framework for understanding the social
about patient sexuality and intimacy after cancer and health care context of individual responses. The
even further is the belief that once a person is faced reflexive inquiry therefore enabled a greater under-
with a life threatening disease, they will focus solely standing of the way health professionals thought
on fighting the disease and lose interest in sexual about patients in relation to sexuality and intimacy,
and intimate aspects of their life (Little, Jordens, the expectations of patients in the cancer context, as
Paul, & Sayers, 2001). well as revealing how cancer and palliative care
While much has been written about the impor- literature, educational forums and clinical practice
tance of communicating with patients about sexual guidelines influenced patient and health professional
changes after cancer (Auchincloss, 1989; Schover, interactions.
2005), only one research group to date has Data was collected from three sources: semi-
published findings on why health professionals do structured interviews, feedback from cancer and
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palliative care forums and a textual analysis of The research design

cancer and palliative care guidelines. Semi-struc-
tured participant interviews (n ¼ 82) were con- The study was conducted across one large metro-
ducted with patients and health professionals. politan, multi-campus, public teaching hospital in
Preliminary interview data was then presented at Australia throughout 2002–2005. Ethics approval
15 forums (attended by patients or health profes- was obtained from the university (02-112) as well as
sionals) to provide further validation of the data, as the hospital Research and Human Ethics Commit-
is consistent with the reflexive research process tee (H2002/01487). Over 300 recruitment fliers and
(Cuncliffe, 2003; Koch & Harrington, 1998). Each invitations to participate in the research project
cancer patient forum (n ¼ 7) was attended by an were placed in patient information packs distributed
average of 30 people and each health professional to every cancer patient attending outpatient, day
forum (n ¼ 8) was attended by an average of 80 oncology, radiation oncology and palliative care
health professionals interested in cancer or palliative services for the duration of the study. A purposeful
care. The forums, each lasting approximately 1.5 h, sample of 50 people who had experienced a
provided the researchers with an opportunity to diagnosis of cancer and 32 health professionals,
receive questions and feedback from the audience. with a minimum of one year experience in cancer
Most of the feedback was confirmatory of the and or palliative care, consented to participate in
findings; however, the principal researcher docu- semi-structured, tape recorded interviews. All inter-
mented notes of any feedback that further informed views were conducted by the principal investigator
the data analysis. at a time and in a place that best suited the
This process encouraged us to conduct a textual participant. For the majority of patients, this
analysis of national and international clinical involved being interviewed in the hospital setting
practice guidelines in cancer and palliative care or their home. All health professionals chose to be
(n ¼ 33), to facilitate a deeper understanding about interviewed at their work place.
structural and cultural influences upon patient and Initially, any patient who had experienced a
health professional constructions of sexuality and diagnosis of cancer and was interested in being
intimacy. Based on a framework proposed by interviewed was recruited. After the initial 10
Lupton (2004), the researchers proposed a list of patient interviews were conducted, recruitment fliers
questions to ask of textual material such as why were placed in outpatient clinics that were more
certain words, phrases and images are used to likely to recruit patients with specific cancer types.
describe and portray events and social issues, what As the most prevalent cancer types for men and
the ‘hidden’ sociocultural meaning and assumptions women in Australia are breast, prostate, bowel and
are, whose interests are being portrayed and how lung cancer (Thursfield, Farrugia, Billiet, & Giles,
society would view this. 2003), purposeful sampling enabled the researchers
More specifically, we analysed key issues raised to refine the sample size to achieve adequate
by interview participants, the ways in which representation from these cancer groups (Table 1).
questions were asked by forum participants, and Patient demographics were recorded (Table 1) and
how these issues were addressed throughout a range of particular importance was the age range from 22
of clinical practice guidelines. For example, inter- to 88 years, where 22 (44%) of the participants were
view data revealed that many health professionals over 60 years of age. This was significant as many
struggled with communication strategies about how health professionals assume people over the age of
to initiate a conversation with a patient, or make 60 are asexual or disinterested in sexual issues
time to discuss intimate and sexual changes after (Hughes, 2000; Lemieux et al., 2004). The goal of
cancer, and assumed patients would raise the topic the interview was to focus on the patient’s
with them if it were that important. Forum experience and views in relation to the research
responses to interview data emphasised that many question. Five of the patient interviews were
patients searched for practical strategies and emo- conducted in the presence of a family member or
tional support about how to come to terms with friend. This was the patient’s choice and transcrip-
their altered sense of sexual or intimate self, yet tions of these interviews focused on the patient
assumed if the topic was not raised by health perspective.
professionals caring for them, these issues must not Purposive sampling was also used to ensure
be important. participating health professionals would ultimately
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Table 1 Table 2
Patient population demographics (n ¼ 50) Health professional demographics (n ¼ 32)

Characteristic No. patients (%) Number (%)

Age (years) Discipline

21–30 4 (8%) Doctors 10 (31%)
31–40 3 (6%) Nurses 13 (41%)
41–50 9 (18%) Social worker 4 (13%)
51–60 12 (24%) Occ therapist 1 (3%)
61–70 8 (16%) Physiotherapist 2 (6%)
71–80 11 (22%) Pastoral care 1 (3%)
80+ 3 (6%) Volunteer 1 (3%)
Cancer type Gender
Breast 10 (20%) Male 8 (25%)
Prostate 11 (22%) Female 24 (75%)
Bowel 5 (10%)
Years of experience cancer and palliative care
Lung 5 (10%)
1–3 7 (22%)
Haematological 8 (16%)
Other 6 (12%) 4–6 9 (28%)
7–10 5 (16%)
Time since cancer diagnosis 10+ 11 (34%)
o1 year 25 (50%)
1–2 years 12 (24%)
3–5 years 4 (8%)
6–10 years 5 (10%) of doctors and nurses than any other member of
Culture allied health, because doctors and nurses often form
Australian 38 (76%) the basis of multidisciplinary teams (National
Italian 3 (6%) Breast Cancer Centre and National Cancer Control
British 1 (2%)
Greek 1 (2%)
Initiative, 2003). As well as the mass distribution of
Turkish 1 (2%) recruitment fliers throughout cancer and palliative
Chinese 1 (2%) care settings within the hospital, over 50 persona-
Sri Lankan 1 (2%) lised invitations were also placed in mailboxes of
Dutch 1 (2%) health professionals working in these areas. Twenty
Macedonian 1 (2%)
participants were recruited in this manner. Prospec-
African 1 (2%)
Austrian 1(2%) tive interviewees read a Participant Information
Sheet outlining the aims, method and research
Highest level education
Some primary school 1 (2%)
process prior to consenting to participate in the
Finished primary school 4 (8%) interview, timed to best suit individual needs. Prior
Some secondary 15 (30%) to the interview, each participant was provided with
Completed secondary 8 (16%) a verbal overview of the research, in accordance
College or tech school 7 (14% with the research protocol, and asked to complete a
Some university 7 (14%)
consent form and demographic data collection
Bachelors degree 6 (12%)
Masters degree 2 (4%) sheet. Demographic data including patient partner-
ship status as well as sexual orientation were also
Employment status
Full time 18 (36%)
collected, with the hope that this type of data would
Part time 3 (6%) highlight particular issues relevant to people in a
Retired 17 (34%) range of personal or sexual relationships.
Sick leave temp 6 (12%) Interviews were semi-structured, comprising of 16
Sick leave permanent 4 (8%) open ended questions and took an average of 45 min
Unemployed 2 (4%)
to complete. Health professionals were asked what
they thought was important in the communication
process between patients and health professionals
reflect the kind of multidisciplinary team most and whether they could recall a time when they had
cancer patients would have access to (Table 2). experienced an opportunity to discuss issues of
For example, we actively recruited a larger number intimacy and sexuality with a patient after a
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diagnosis of cancer. If so, they were encouraged to ensured different views within the three data sets, as
explore what was important for them and what was well as those of the researchers, were represented
important for the patient who instigated the topic, throughout all stages of data analysis and findings
how it made them feel to discuss these issues with a (Fontana & Frey, 2003). Researcher reflexivity
patient, and how much time they allocated to involved a methodical approach to entering re-
discuss these issues in day to day practice. If they searcher notes, journal entries and a log of research
were unable to recall this type of discussion with a related events were made during the data collection
patient, they were asked what issues they would period and provided adjunct data to the interview
consider important from patient and health profes- transcripts, capturing finer nuances of the data such
sional perspectives. as interruptions by medical rounds, presence of
Patients were also asked what they valued in the family members and how these impacted upon the
communication process between themselves and a patient interview.
health professional, if they could recall a time when As data analysis progressed, it became apparent
they had experienced an opportunity to discuss that the study needed to be expanded to capture the
issues of intimacy or sexuality with a health ways in which sexuality and intimacy was con-
professional, what was important for them in these structed within cancer and palliative care settings.
discussions, whether they could recall who insti- This led the researchers to conduct a textual analysis
gated the topic, how it made them feel talking about (McKee, 2003) of 33 national and international
these issues, how much time was made for these type cancer and palliative care clinical practice guide-
of interactions, and had there been other ways that lines, available electronically through the Internet.
sexuality and intimacy had been addressed by a Preliminary coding involved each of the research-
health professional. If they could not recall talking ers reading interview transcripts, forum transcripts
to a health professional, they were asked what they and clinical practice guidelines line by line, search-
would consider important and the way they would ing for terms used by the participants and con-
have liked (or not liked) these issues to be raised by stantly making comparisons for similarities and
a health professional providing their care. All differences between the data. Malterud (2001)
participants were asked to define the terms ‘in- describes this analysis process as ‘‘decontextualisa-
timacy’ and ‘sexuality’, their main concerns about tion’’ where subject material is ‘‘lifted out’’ and
providing or receiving support about sexual and examined more closely together with other elements
intimate issues and whether there was anything else of the material that describes similar issues. Emer-
they would like to add to their interview. Code ging themes were identified by each of the research-
numbers were used on cassette tapes, participant ers and coded independently to provide a systematic
documentation and interview transcripts to ensure account of what had been recorded (Creswell, 2003;
confidentiality and anonymity of all participants Ezzy, 2002). At this stage both researchers met to
(RN ¼ Registered nurse, DR ¼ Doctor, SW ¼ So- discuss their preliminary analysis, resulting in the
cial worker, OT ¼ Occupational therapist, PHY- commencement of a secondary level of analysis of
SIO ¼ Physiotherapist, PC ¼ Pastoral Care and the data. Codes were then subjected to a conceptual
VOL ¼ Trained volunteer). level of analysis, drawing upon the work of Giddens
Transcripts of the 82 interviews were typed and to make further sense of the data. This involved
checked for accuracy prior to importation into examining all of the 147 ‘free’ codes under sub
NVivo Qualitative Researcher Computer Analysis headings that linked with Giddensian concepts such
Package (Bazeley & Richards, 2000; Ryan & as ‘trust’, ‘truth’, ‘risk,’ ‘individual and social
Bernard, 2003) to facilitate a transparent line by reflexivity’. It became apparent throughout the
line analysis of the data. Preliminary research interviews that the majority of patients and a small
findings in the form of emerging themes were number of health professionals were increasingly
presented to any cancer patient or health profes- reflexive about the research questions as the inter-
sional interested in the research topic at a total of 15 view progressed so that, as Giddens suggests (1998),
forums. The researchers documented the types of reflexivity was often an unconscious process where
questions and responses from each forum audience, people actively thought about what they believed
as a way of validating key issues identified from while they were responding to the research ques-
people not directly involved in the study. Rigour tions. Analysed as clustered responses and concep-
and verification within the reflexive inquiry method tualised along a five point reflexive continuum, the
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Fig. 1. Mismatched expectations.

range of reflexive responses were so varied between located in the moderately to highly reflexive clusters
participants, that patient and health professional where patients spoke about wanting health profes-
data was separated (Fig. 1). As the study pro- sionals to provide them with the option of discuss-
gressed, we noted consistent documented evidence ing intimate and sexual changes since their diagnosis
of increasing congruence between the responses of cancer, at a time and in a manner that best suited
of forum participants to the research data, so that, their individual needs. More reflexive patients
by the completion of the project, we felt the reflexive indicated a belief that they had choices regarding
methodology ensured the project would be relevant the type of cancer treatment they were entitled to,
to patients and health professionals in all areas of as well as an expectation that health professionals
cancer and palliative care. would be open and honest about the impact of
these treatments on intimate and sexual aspects of
Findings their lives. Irrespective of patient age, gender,
diagnosis, culture or partnership status, the major-
Patient perspectives ity of patients felt their intimate and sexual needs
were largely ignored by the health professionals
Five patient cluster themes emerged from the caring for them, particularly when they searched
data, best typifying the overall reflexive positioning for information, practical advice and emotional
of the patient at the time of the interview. Dominant support to assist them in adapting to their altered
attitudes and beliefs about issues of intimacy and sense of self.
sexuality within the interview determined where the
patient would best be located along the reflexive Survival is more important than my sexuality cluster
cluster continuum—a conceptual tool used to assist
the researchers make sense of the data. Cluster The smallest number of patient responses was
themes were named ‘Survival is more important than located at the less reflexive ‘survival is more
my sexuality’ (n ¼ 2) and ‘Trust in the expert’ important than my sexuality’ cluster where patients
(n ¼ 6) clusters to represent the less reflexive patient spoke about how they ‘just get on with life’, ‘don’t
who put their total trust in ‘expert systems’, look at myself anymore’ and manage life without
oblivious to the choices or rights they had as a sexual intercourse, feeling lucky to be alive and
patient. Patients located within the less reflexive end grateful for the treatment they had received . Even
of the continuum were more likely to define within this small cluster of patient responses there
sexuality in the functional sense, using words or was fluidity in how they positioned themselves.
statements pertaining to whether or not they could Patients who initially spoke in pragmatic ways
have penetrative intercourse, rather than the impact about the impact of their cancer on intimate and
their cancer had on sensual or intimate aspects of sexual aspects of their lives such as ‘in the big
their lives. In contrast, the ‘Search for options’ scheme of things y it’s a minor thing [having no
(n ¼ 9), ‘Am I normal’ (n ¼ 20) and ‘Negotiated feeling in a reconstructed breast]’ expressed later in
communication’ (n ¼ 13) clusters represented the the interview ‘somebody should have said this is
more reflexive patients at the other end of the how you are going to feel about it y and offered us
continuum. The majority of patient responses were some practical ways of dealing with it as a couple.’
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Trust in the expert cluster For some, this involved wearing concealing clothing
to increase feelings of confidence when loss of hair,
Within the second cluster of less reflexive patient weight change, surgical scars and removal of body
responses, many traditional assumptions were made parts made them feel ‘less of a woman’ or man.
by patients. There was a belief that if sexuality was Others spoke of the ‘desperate search’ to speak to
important enough to cause anxiety ‘my doctor another person who had been through a similar
would tell me.’ This small cluster of patients experience, and could share their coping strategies
accepted the medicalised, ‘traditional expert’ ap- with them, particularly if they felt their ‘marriage
proach of health professional who only spoke about was on the rocks’ or that ‘something has gone
sexuality in the context of cancer impacting on terribly wrong’.
fertility, contraception, menopausal and erectile
status. Patients located within this cluster were not Am I normal cluster
actively searching for health professionals to assist
them to adapt to the changes they experienced as a A large number of the patients located within this
result of their cancer diagnosis or treatment, and did highly reflexive cluster theme, were actively search-
not wish to place the health professional in an ing to discuss physical and emotional changes
‘uncomfortable situation’ by raising the topic impacting upon their sexuality and intimacy as a
themselves. Only patients located within this cluster result of their cancer diagnosis, in order to
accepted that health professionals could use hu- determine if their experience was normal. ‘It might
mour and ‘joke with you along the way’ to facilitate just be me y because nobody talks about it’ was a
discussions about more sensitive topics such as common statement made by patients in this cluster.
sexuality, irrespective of whether they felt their ‘Is that normal to lose interest in sex y it’s a big
information and support needs were being met. worry for me’ echoed similar concerns. This large
cluster of patients included many people who felt
Search for options cluster angry and let down by health professionals who
could not provide them with the information,
In contrast to the previous cluster, there was a support or practical strategies they searched for to
sense of frustration from patients located in the assist them to ‘live with the changes’ their cancer
moderately reflexive ‘search for options’ cluster, who treatments had resulted in. Patients within this
spoke about the inappropriate use of humour used cluster spoke about the confusing medical terminol-
by health professionals. ‘He mentioned Brad would ogy many health professionals used and about
have another boob to play with y nothing you seeking alternate medical opinions, taking friends
could discuss’ which trivialised the changes patients and partners to consultations to help them feel
were experiencing and prevented them from obtain- better equipped, and searching the Internet and
ing the type of open and honest information they other patient support avenues to get the kinds of
were searching for. Patients located within this answers they required.
cluster searched for ‘the right person’ they could
communicate with about the sexual and intimate Negotiated communication cluster
changes they were experiencing. This often meant a
search for non-medicalised discussions with a health Highly reflexive patients within this cluster
professional they could trust to deal sensitively with recognised they were a ‘participant in my treatment’
the topic and who cared about them in a way that and made demands with health professionals caring
respected them as ‘a person rather than my disease’. for them to enter ‘a partnership between the medical
Occasionally patients would seek out a particular professional and the patient y which would see me
health professional based on the health professional as part owner of everything that is being done to
age or gender, with a range of constructive and less me’. This cluster of patients were able to articulate
constructive results. This cluster of patient re- that their relationships, sexuality and intimacy ‘are
sponses also captured the range of practical cloth- the most important part of my life y not just
ing, wig or prosthesis options, as well as the choices physically y [but also] y mentally’, making
of emotional and supportive needs, patients were demands on health professionals to shift their focus
searching for to assist them in dealing with the beyond ‘staying alive’ to assisting them to ‘live with
intimate and sexual changes they were experiencing. the changes’ they were experiencing. Occasionally,
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patients within this cluster spoke about effectively intimacy and how their personal assumptions about
communicating about these issues with a health patients impacted upon their clinical practice.
professional, but mostly they ‘found out in their
own ways’. They searched the Internet to ‘read more It is not life or death cluster
about it’ if they required further clarification or In stark contrast to the patient cluster themes, the
doubted the accuracy of information provided by majority of health professionals were located at the
their health professional. Patients within this cluster less reflexive end of the cluster continuum where
were more likely to believe it was a shared they assumed that patients would be ‘most con-
responsibility for the patient and health professional cerned about their prognosis’ [SW3] where ‘surviv-
to raise the topic for discussion. ing y getting out of here must be more important
Added to these findings demographic data than all these personal issues’ [RN5]. Patients were
revealed that asking patients to classify themselves assumed asexual by health professionals who spoke
as never married, married, defacto/cohabiting, of the ‘formulaic y standard spiel with regards to
divorced, separated, widower and ‘other’ revealed disseminating material y. It’s more that I talk at
that these categories are no longer suitable classifi- them y with a list of outcomes’ [DR10] where a
cations to gain an understanding about partnership ‘pecking order of information required’ [RN2] by
status in late modernity, where there is a wide range the patient was determined by the health profes-
of individual variations to the term ‘partnership’ sional providing the care. Health professionals
status. This was highlighted when participants located within this cluster assumed the patients
classified themselves as single when they were would share their one-dimensional focus on com-
divorced; partnered yet not cohabiting, or, when bating the disease irrespective of the physical and
widowed 30 years previously, they classified them- psychological impact on the patient’s intimate and
selves as widowed, even if their cohabiting relation- sexual life.
ship had expanded over decades. Similarly, two
(4%) patients classified themselves as ‘same sex’, I manage to avoid the topic cluster
even though one of these men had not been in a Many health professionals spoke of the avoidance
sexual relationship for 20 years and one woman strategies they consciously employed to keep patient
classified herself as bi-sexual, yet was married at the interaction at a level they were comfortable with.
time of the interview. Unfortunately, this level of For the majority of health professionals this usually
data analysis was not completed in time to revise the meant that if sexuality was ever raised with a
demographic collection sheet used for all patient patient, it was done in the context of treatment
participants. These demographic findings support induced fertility, contraceptive requirements, meno-
Giddens’ (1992) notion of plastic sexuality in pausal or erectile status. Health professionals
modern day society, emphasising at the clinical located in this cluster frequently assumed ‘some-
practice level the importance of acknowledging that body else’ within the team would be dealing with
patient sexuality and intimacy is not determined by these patient issues as well as describing their own
partnership status. lack of comfort in addressing the ‘intimate side of
things’ [DR10]. They spoke of actively ‘skimming
Health professional perspectives around the edges’ [OT1] of the topic, ‘because I’m
not really good at comforting people’ [PHYSI]
Health professional thematic responses were also when discussions had the potential to expand
conceptualised along a reflexive cluster continuum, beyond traditional, medical problem based commu-
where the majority of less reflexive health profes- nication. Most health professionals within this
sionals were clustered at the ‘It is not life or death’ cluster referred to the lack of time and privacy to
(n ¼ 10) and ‘I manage to avoid the topic’ (n ¼ 11) conduct intimate patient discussions.
end and the more reflexive health professionals were
clustered around health professional ‘I can’t expose I can’t expose my vulnerability cluster
my vulnerability’(n ¼ 6), ‘It is risky business’ (n ¼ 3) Increasingly reflexive but smaller numbers of
and ‘Negotiated communication’ (n ¼ 2) end of the health professionals were located within this cluster.
reflexive continuum. The more reflexive a health They knew their ‘personal boundaries’ [RN12] and
professional was the more likely they were to be able worried what colleagues and patients would think of
to articulate personal definitions of sexuality and them if they spoke of patient issues of intimacy and
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sexuality in the face of life threatening illness. Some particular communication mores associated with
health professionals within this cluster were able to non-Western cultures. Over 20 of the health
recognise they drew upon life experiences to give professionals interviewed made references to raising
them the confidence to communicate with patients such a sensitive topic with patients from the Muslim
more openly, whereas other health professionals in community. ‘For me to raise sex with a Muslim man
this cluster recognised the relationship between would be such an affront y a complete taboo y
struggling to speak openly about intimacy and even yesterday I was interviewing a Muslim man
sexuality in their personal worlds, and their with an interpreter y so I was very conscious of y
reluctance to raise the topic with a patient. Frequent very careful with someone like that’ [PHYSIO 2]. At
references were made to the use of humour ‘to make the time of the interviews there were great changes
light of a bad situation y so they [the patient] can happening in the world with heightened awareness
see the funny side’ [116DR3]. Some health profes- about activities in the Middle East. The heightened
sionals were reflexive enough to see that they awareness did not necessarily correspond with an
employed humour as a communication strategy to increased understanding of different cultures and, in
make themselves or their colleagues feel more most cases, merely led to a wariness and aloofness
comfortable, without thinking how this might be with people who looked like they were from the
interpreted by the patient. While humour has been Middle East. A few more reflexive health profes-
cited as a communication strategy employed to sionals were able to articulate these concerns with
diffuse challenging medical situations (Burnard, comments like ‘It doesn’t help having the intense
1997), little has been written about the inappropri- media portrayal of Muslims representing fear and
ate use of humour by health professionals when risk at a national and international level’ [Dr 5]. It is
patient needs are not heard across jovial banter and difficult to gauge whether the health professional
laughter, or when use of humour may be misinter- focus on the Muslim culture would have been so
preted by the more vulnerable patient. apparent had these interviews been conducted prior
to 2002.
It is risky business cluster Most health professionals spoke about the lack of
When conversations expanded beyond ‘safe’ privacy and discomfort the patients may experience
horizons of medical expertise, a group of more if asked to discuss these issues within the hospital
reflexive doctors spoke about the ‘risky’ patient setting. This cluster of health professionals were
exchanges they did their best to avoid when patients more likely to recognise that these environmental
‘look anything like the age of my parents’ [DR5], factors as well as the general discomfort they were
come from cultures where the health professional referring to were more likely to be a reflection of
may ‘look naı̈ve and ignorant’ [DR5], ‘not wanting their own embarrassment and feelings of inade-
to rub their face in it’ [DR3] when they assumed a quacy, rather than those of the patient, particularly
patient was single as well as expressing concerns when they recognised their place of work as a
about ‘being seen as coming on to my patients’ culture that regarded patient sexuality and intimacy
[DR1] or being sued for crossing medicolegal as taboo. Similarly, these health professionals spoke
boundaries when enquiring about intimate and of the ‘horrified’ [SW2] attitudes and reactions of
sexual aspects of the patient’s cancer experience. It their colleagues as constraining influences on their
did not occur to these doctors that they could be attempts to address patient intimacy and sexuality.
sued for failing to address the topic if the patient felt Concerns were raised about being perceived as ‘the
it was part of the overall health care they should be talker, not the worker’ [RN5] by colleagues who
providing. were quick to judge any attempts to view patients as
Many health professionals spoke about feelings sexual beings.
of uncertainty, ‘being afraid to be misinterpreted’
and looking ‘downright naı̈ve’ when attempting to Negotiated communication cluster
communicate with patients from non-Western Highly reflexive health professionals located in
cultures. Some health professionals conceded these this cluster promoted patient-centred communica-
feelings of discomfort would be experienced regard- tion based on reciprocated trust and respect. A
less of the topic they were discussing. They reflected small number of health professionals within this
on personal feelings of discomfort, recognising their cluster identified a relationship between their
concerns were around being ‘ignorant’ about personal definitions of sexuality and intimacy and
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1714 A.J. Hordern, A.F. Street / Social Science & Medicine 64 (2007) 1704–1718

how these may impact on their professional world. discussing psychosocial support, the terms ‘sexual-
‘I’m comfortable with who I am y my own ity’ and ‘body image’ were defined in a medicalised
sexuality y you have to work yourself out first’ style of language within the 1999 Psychosocial
[DR2]. ‘The more comfortable I can be, the more Guidelines, evident in the use of the terms ‘difficul-
intimate it becomes in that people are likely to open ties’, ‘problems’ or ‘disturbances’ in sexual function
up’[SW1]. However, it was much more common for (National Health and Medical Research Council
a health professional to provide a holistic, person National Breast Cancer Centre Psychosocial
centred definition of sexuality and intimacy, which Working Group, 1999).
bore no resemblance to the way they spoke about However, a remarkable advancement in the
addressing patient sexuality in their clinical practice. concept of psychosocial support was apparent in
A doctor provided a personalised account of the 2003 Psychosocial Guidelines for Adults with
sexuality and intimacy when he described sexuality Cancer where, for example, patient sexuality was
and intimacy as ‘‘crossing over’’ and ‘‘multifaceted’’ constructed in broad, patient-centred ways, empha-
so that it ‘‘transcends between physical and mental sising health professional responsibility to address
y it’s a perceptiony it’s the act of sex as well, the topic, irrespective of the site of the cancer or the
yit’s the way they feel to the particular gender y age of the person (National Breast Cancer Centre
and that depends on the person’s y self perception and National Cancer Control Initiative, 2003, pp.
of their gender y it’s also a bit of their physical 17–18). Of particular interest, and expanded upon in
sexual relationship with a partnery’’ [DR 10]. the 2003 clinical guidelines, were references made to
However, the same doctor used different language ‘the personal barriers’ and experiences health
and emphasis when he spoke about patient sexuality professionals brought to their practice, evident in
and intimacy. His conversation was very much the following quote: ‘‘y the training, skills,
centred on providing the patient with information attitudes and beliefs of health professionals will
he believed they should know in an ‘objectified’, affect clinical care, often in subtle ways’’ (National
‘formulaic’ manner. The doctor also reflected that Breast Cancer Centre and National Cancer Control
he felt much more comfortable with providing Initiative, 2003, p. 5). Whilst barriers to addressing
information about the physical aspect of patient patient sexuality were cited, further exploration
care rather than the intimate side [DR 10]. There about changing the culture of patient care to include
were clearly complex cultural issues at work within patient sexuality and intimacy, and practical strate-
the health care setting, which contributed to the gies to assist health professionals to engage in
overall maintenance of patient health status as reflexive and constructive processes to recognise and
‘asexual’ and in need of far more important care challenge the personal belief system they work
from the health professional. within, were not documented in either clinical
The textual analysis supported these findings, practice guideline. The overall findings of the
where for example the language and dominant textual analysis therefore revealed that patient
emphasis throughout each Clinical Practice Guide- sexuality remained largely invisible within guide-
line remained predominantly focused at the level of lines that influence clinical, educational, and future
cancer diagnosis, treatment and cure. The two policy development.
exceptions were the Australian Psychosocial Clin-
ical Practice Guidelines for Women with Breast Discussion
Cancer (National Health and Medical Research
Council National Breast Cancer Centre Psychoso- The ever changing, individual and plastic (Gid-
cial Working Group, 1999) and the Australian dens, 1992) nature of human sexuality and intimacy
Psychosocial Clinical Practice Guidelines for Adults was evident throughout the findings of this study,
with Cancer (National Breast Cancer Centre and which emphasised that these terms meant different
National Cancer Control Initiative, 2003)—where things to different people at different stages of their
both guidelines aimed at exploring psychosocial lives. Particularly noteworthy was the portrayal of
aspects of cancer in ways that have not been health as a mobile commodity, thrust into the hands
previously documented nationally or internationally of patients by social forces promoting patients as
(Australian Government Department of Health and part owners of their health, yet reclaimed in the
Ageing, 2003; Turner, McVoy, Luxford, & Fletcher, cancer and palliative care clinical setting by tradi-
2004). The textual analysis revealed that even when tional ‘experts’ operating within boundaries that
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A.J. Hordern, A.F. Street / Social Science & Medicine 64 (2007) 1704–1718 1715

blurred the visibility of patient sexuality and claims of ‘‘ritual truth’’ (Giddens & Pierson, 1998,
intimacy. Irrespective of the scientific and techno- p. 128) became increasingly visible when the
logical sophistication evident throughout these majority of health professionals engaged in ‘tradi-
modern clinical spaces, the patients were firmly tional expert’ styles of communication with patients
located in traditional, less reflexive practices by the and in the process denied, ignored or avoided
health care structures in place. There would never intimate and sexual aspects of the patient’s life. This
be the time or place to acknowledge patient issues of was evident when health professionals spoke of
intimacy or sexuality within these clinical settings, addressing patient sexuality and intimacy in the
where the dominant emphasis remained at the level context of how a cancer treatment was going to
of cancer treatment and problem-based medicine. impact on a patient’s sexual function or fertility
The work of The, Hak, Koeter, and van der Wal status, in a style that emphasised medicalised,
(2001, p. 251) has also highlighted health profes- problem-based, health professional communication.
sional and patient collusion in the ‘recovery plot’ These findings are not surprising, as much of the
where researchers observed that the greatest amount focus of literature, clinical practice guidelines and
of energy and time in patient and health profes- ongoing education to date emphasises functional or
sional communication was spent on discussions genital alteration to fertility, contraception, erectile
around treatment and cure. dysfunction, menopausal status and libido (Ander-
For the majority of patients, an interruption like son, Woods, & Copeland, 1997; Hughes, 2000; Rice,
cancer provided an opportunity for a re-appraisal of 2000; Thaler DeMers, 2001), where little research is
all that was important to them in their lives. Many aimed at assisting patients to live with the changes
patients within this study revealed an innate impacting upon intimate and sexual aspects of a
capacity to be reflexive about the impact of their person’s life after cancer. It is important to
altered self on more intimate and sexual parts of emphasise at this point that research pertaining to
their lives. Others recognised, through researcher the more functional aspects of patient sexuality also
questioning, that they were actively searching for reveal lack of regard in ensuring patient needs are
ways to adjust to the effects of cancer on their body, being met. Schover, Brey, Lichtin, Lipshultz, & Jeha
within their relationship and the way they defined (2002) found that even when the majority of doctors
themselves as men and women. For the majority of (91%) thought that sperm banking should be
patients, this level of reflexivity included tapping offered to men at risk of losing their fertility as a
into a range of health information and support result of cancer treatment, only 48% raised the topic
options they felt they were entitled to as patients, with the patient.
including cancer support groups, Cancer Help In our research, it was not only structural
Lines, Internet based consumer and health profes- constraints or lack of education that prevented
sional information. Literature to date supports health professionals from communicating with
the suggestion that patients are increasingly proac- patients about sexual and intimate changes after
tive in their search for information and support cancer. Feelings of personal vulnerability and
after a cancer diagnosis (National Breast Cancer uncertainty drove the majority of health profes-
Centre and National Cancer Control Initiative, sionals away from the topic, even when they were
2003; Yamey, 2002), without alluding to the aware that patients had these concerns. Our findings
implications for health professionals as they attempt indicate that rather than trusting their communica-
to navigate through the unfamiliar territory of tion skills or attempting to engage in reflexive
communicating about intimate and sexual changes communication processes, health professionals dis-
patients may be experiencing after a diagnosis of guised feelings of uncertainty and vulnerability and
cancer. made assumptions about the needs of patients; they
Reflexive communication, however, was a new were often unable to recognise or articulate why
concept for the majority of health professionals they had influenced patient interactions in this way.
participating in this research project. This was For the majority of health professionals, it was
particularly apparent when issues of patient in- personally confronting to raise these issues with
timacy and sexuality expanded beyond the safety of patients of a particular gender or culture, particu-
‘medicalised’ concepts, which could be communi- larly when the person resembled the age of their
cated in a traditional expert manner. Giddens’ own parents. The majority of health professionals
notion that tradition was once justified through managed to avoid the topic altogether or assume
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1716 A.J. Hordern, A.F. Street / Social Science & Medicine 64 (2007) 1704–1718

that somebody else would be more skilled in this Conclusion

area of patient communication.
The small cluster representing reflexive health Foremost in moving from a medicalised commu-
professionals responses to these issues, spoke openly nication pattern to a reflexive patient-centred
of seeing a relationship between their personal and pattern is the requirement of health professionals
professional attitudes and beliefs about sexuality to engage in a reflexive exploration of their own
and intimacy and how they impacted upon their definitions of intimacy and sexuality and how these
clinical practice. This level of reflexivity however impact on their professional world. Without an
was rare and even the more reflexive participants active engagement with the ‘self’ (Cole & Knowles,
were unable to consciously articulate the discre- 2000; Cuncliffe, 2003), ‘mismatched’ expectations
pancy between providing highly individualised, between patients and health professionals will
patient-centred definitions of intimacy and sexual- remain the dominant outcome in attempts to
ity, and their inability to translate these definitions communicate about patient issues of intimacy and
of sexuality and intimacy into their everyday clinical sexuality.
practice.
Overall, patients wanted information, emotional Implications for practice
support and practical strategies, provided by a
health professional in a manner that is timed to suit Providing opening communication cues and
their individual needs, to assist them to live with checking personal assumptions about patient sexu-
changes to their sexuality and intimacy after ality and intimacy with the patient are vital for
treatment for cancer (Krychman, Amsterdam, patient-centred communication. Asking ‘How has
Carlson, Carter, & Castiel, 2004; Lemieux et al., this treatment affected intimate or sexual aspects of
2004; Stead et al., 2002). In contrast, most health your life?’, ‘Many men or women find they lose a bit
professionals within this research project catered of their sexual confidence after a cancer diagnosis.
for a more ‘homogenous’ and rigid interpretation How are you going?’ or ‘You have been through so
of patient sexuality and intimacy, based upon much since your diagnosis. How has it affected the
assumptions they made about the patient’s age, way you see yourself as a man or a woman?’ and
gender, culture, partnership and disease status, in a checking personal assumptions with patients, parti-
problem and disease-based manner, without check- cularly when the patient is elderly, frail, single, from
ing these assumptions with the patients they were another culture or facing advanced disease, would
treating. provide a sound starting point in moving towards a
more negotiated form of communication between
Study limitations patients and health professionals. Documenting the
occurrence of these discussions or providing formal
Limiting participants to those who could speak referrals to health professionals willing to engage in
English, and who were prepared to speak about a conversations about intimate and sexual issues after
sensitive topic is a deficit of this study. Furthermore, cancer has the potential to assist in placing patient
conducting interviews with people who had experi- sexuality on the health care agenda.
enced a cancer diagnosis or for health professionals Furthermore, a framework through which to
working in this speciality area, involved asking the facilitate this level of health professional reflexivity
participants to recall retrospective conversations is required to assist health professionals to move
which may have been forgotten over time. Even beyond personal assumptions and beliefs about
though the patient population was from a wide intimate and sexual changes a person may experi-
variety of countries, the patient sample size did not ence as a result of cancer, and to successfully erode
provide the opportunity to interview large groups dominant, medicalised structures in place. Future
from particular cultures. Thus, the data of this research into how this kind of reflexive framework
project reflects the values and experiences of Anglo- would be received by health professionals, as well as
Australians. Whilst the interview participants were an exploration into the relationship between age,
drawn from one teaching hospital in Melbourne, experience, gender or education of health profes-
forum participants who responded to preliminary sionals and how that may impact upon perception
research findings were from a broad range of cancer of patient intimacy and sexuality is required.
and palliative care settings across the state. Similarly, a longitudinal study to assess the benefits
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A.J. Hordern, A.F. Street / Social Science & Medicine 64 (2007) 1704–1718 1717

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