Accepted: 23 March 2017 DOI: 10.1111/jocn.13844
DISCURSIVE PAPER
Heteronormativity and prostate cancer: A discursive paper Daniel Kelly PhD, RN, FRCN, Royal College of Nursing Chair of Nursing Research
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Dikaios Sakellariou PhD, Senior Lecturer | Sarah Fry BSc, RN, Lecturer | Sofia Vougioukalou PhD, Research Associate School of Healthcare Sciences, Cardiff University, Cardiff, UK
Aims and objectives: To discuss the risks that heteronormative assumptions play in prostate cancer care and how these may be addressed.
Correspondence Daniel Kelly, Cardiff University, Cardiff, UK. Email:
[email protected]
Background: There is international evidence to support the case that LGBT patients with cancer are less likely to report poor health or self-disclose sexual orientation. Gender-specific cancers, such as prostate cancer, require particular interventions in terms of supportive care. These may include advice about side-effect management (such as incontinence or erectile dysfunction), treatment choices and social and emotional issues. In this paper, we discuss and analyse the heteronormative assumptions and culture that exist around this cancer. We argue that this situation may act as a barrier to effective supportive care for all Lesbian women, Gay, Transgender and Bisexual patients, in this case men who have sex with men. [Correction added on 21 September 2017, after first online publication: The first sentence of the Background section has been revised for clarity in this current version.] Design: Theoretical exploration of heteronormativity considered against the clinical context of prostate cancer. Methods: Identification and inclusion of relevant international evidence combined with clinical discussion. Results: This paper posits a number of questions around heteronormativity in relation to prostate cancer information provision, supportive care and male sexuality. While assumptions regarding sexual orientation should be avoided in clinical encounters, this may be difficult when heteronormative assumptions dominate. Existing research supports the assertion that patient experience, including the needs of LGBT patients, should be central to service developments. Conclusion: Assumptions about sexual orientation should be avoided and recorded accurately and sensitively, and relational models of care should be promoted at the start of cancer treatment in an appropriate manner. These may assist in reducing the risks of embarrassment or offence to nonheterosexual patients, or to professionals who may adopt heteronormative assumptions. Relevance to clinical practice: Having an awareness of the risks of making heteronormative assumptions in clinical practice will be useful for all health professionals engaged in prostate cancer care. This awareness can prevent embarrassment or upset for patients and ensure a more equitable provision of service, including men with prostate cancer who do not identify as heterosexual. KEYWORDS
cancer, heteronormativity, inequality, nursing, prostate cancer, sexuality, supportive care J Clin Nurs. 2018;27:461–467.
wileyonlinelibrary.com/journal/jocn
© 2017 John Wiley & Sons Ltd
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1 | INTRODUCTION Prostate cancer is now the second most frequently diagnosed cancer worldwide (Lee et al., 2015). However, in more developed countries,
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What does this paper contribute to the wider global clinical community?
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This paper questions the role that assumptions about
deaths from prostate cancer are decreasing, as a result of improved
sexual orientation can make to men facing a diagnosis of
treatment and better detection (Torre et al., 2015). Increased survival
prostate cancer. It uses heteronormativity as a way of
from, or with, prostate cancer introduces new challenges now being
understanding the dominant heterosexual assumptions
addressed under the umbrella term cancer survivorship, a phase of
that may exist in cancer services and with cancer profes-
care concerned with supporting the chronic side effects of cancer
sionals. These become especially important in prostate
treatment (Attard et al., 2016; Colella & Gejerman, 2013). In this arti-
cancer when side effects and related concerns are being
cle, we examine the dominance of heteronormative assumptions and
discussed. Equity in cancer care must include considera-
invite a more open debate about whether cancer services currently
tion of diversity in sexual orientation, and we explore
meet the needs of all, rather than the heterosexual majority.
the need for this to occur in the context of prostate cancer in this discussion paper.
2 | HETERONORMATIVITY AND PROSTATE CANCER
An example of such an assumption can be seen in the methods for assessment of erectile dysfunction after prostate cancer treat-
The incidence of prostate cancer is increasing, and it is inevitable
ment. It is well documented that the outcomes of such treatments
that a proportion of gay and bisexual men will be diagnosed in their
can include problems with sexual functioning, such as erectile dys-
lifetime. There is concern that for some of these men, prostate can-
function, penile shrinkage and loss of libido (Asencio et al., 2009;
cer may present particular challenges relating to sexual function
Blank, 2005), as well as potential damage to the pelvic floor causing
(often due to side effects of treatment rather than the cancer itself),
urinary and faecal incontinence (often as a result of surgical inter-
but also because of the heteronormative bias in clinical settings
vention and radiotherapy). Discussions about sexual dysfunction
(Asencio, Blank, Descartes, & Crawford, 2009). Some men consider
after prostate cancer treatment commonly focus on the assessment
impotence because of treatment as an inevitable or even acceptable
of erectile (dys)function, however, based on the assumption that the
side effect, whereas others may associate impotence with their iden-
“ideal” penis should be erect enough to achieve and maintain vaginal
tity as men (Chapple & Ziebland, 2002). For men who do not iden-
penetration. However, this fails to recognise a group of men for
tify as heterosexual, there are particular issues to consider. One of
whom vaginal penetration may not be a concern. For sexually active
the most pertinent is the role that heteronormativity plays in shaping
men who have sex with men (MSM), oral or anal penetration may be
service provision.
more concerning when sexual activity is assessed, and for men who
Heteronormativity has been defined as “the hegemonic discur-
are anally receptive, concerns will centre more on the late effects of
sive and nondiscursive normative idealisation of heterosexuality”
radiotherapy on bowel or rectal function, including abdominal pain,
(Hird, 2004, p. 27). It rests on several assumptions about human sex-
dietary advice or diarrhoea management (Blank, 2005).
uality including binary opposites of male/female sexual roles stem-
Since the introduction of Viagra in the late 1990s, conversations
ming from a heterosexual stance. Thus, medical culture may mirror
about the restoration of erectile function have become part of nor-
heteronormative discourses by failing to challenge assumptions
mative speech in prostate practice (Incrocci, 2011); however, conver-
about information needs connected with prostate cancer (informa-
sations about oral sex or anal penetration may remain more taboo in
tion usually created by, and directed at, men who identify as hetero-
clinical discourse. The difficulty clinicians may face in asking MSM
sexual). Heteronormative assumptions can also be more widely
about their sexuality is often reflected in the confidence gay or
pervasive and influence others such as prostate cancer charities,
bisexual men have in the attitudes of healthcare professionals (Blank,
advocacy organisations or research funders.
2005). MSM may feel that they need to tread carefully with hetero-
Recently (from the 1960s onwards in the United Kingdom), there
sexually orientated clinicians, with the associated worry of experi-
was a reluctance to view gay men as equal to heterosexual men
encing subtle or overt homophobia. These fears may, in turn, evoke
(Herek, 2000). Although attitudes are changing, sexual acts between
feelings of isolation and embarrassment that can be implicated in
men who have sex with other men remain taboo in some circles
late presentation of cancer symptoms (Jowett & Peel, 2009). The
(McDonagh, Bishop, Brockjman, & Morrison, 2014). This may be
impact of heteronormativity, therefore, goes beyond clinical encoun-
reflected in clinical practice, particularly through subtle yet powerful
ters and can play an important role in how MSM feel about present-
reinforcements such as the heteronormative language used in scales
ing initially with worrying prostate or urinary symptoms. Specialist
to measure quality of life or sexual dysfunction (McDonagh et al.,
nurses have a crucial role to play in challenging negative stereotypes
2014) or during specific communication tasks such as assessment of
and spearheading practice that promotes equality and diversity in
sexual functioning which reinforce vaginal penetration (Carr, 2007).
prostate cancer care.
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3 | THE PROFESSIONAL RESPONSE
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Gay men are only one of the groups whose intimate sexual lives may be treated with some degree of taboo by health providers.
In the United Kingdom, the remit of the Clinical Nurse Specialist,
There are specific issues around prostate cancer for trans women
Advanced Practitioner or Consultant Nurse roles has expanded
that also require to be addressed and dealt with sensitively, some-
greatly over the last 30 years and commonly involves the giving of a
times many years after gender reassignment (The Lancet Oncology,
prostate cancer diagnosis and ongoing psychosocial support (Tarrant,
2015). Disabled people face similar issues, and it is important to con-
Sinfield, Agarwal, & Baker, 2008). One of the reasons for this is that
sider the wider impact on these diverse groups in order to compare
their remit is to support the patient and their family and because of
the nature of heteronormative-based inequality across different con-
the widespread requirement for each patient with cancer to be
texts.
assigned a key worker at diagnosis. Confirming a cancer diagnosis can evoke anxiety for the nurse about communicating this life-changing news with sensitivity, but also with authority, so that the
4 | WHO IS ALLOWED TO BE SEXUAL?
patient has confidence and feels secure. This is a skill which takes some time to master, as does a conversation with a patient about
Despite recognition of the needs and rights of disabled people and
sexual dysfunction. There is evidence that such conversations may
people living with illness to sexuality, many healthcare professionals
not always take place—even in consultations involving patients with
report reluctance to address sexuality (Esmail, Darry, Walter, &
prostate cancer who have completed treatment for prostate cancer
Knupp, 2010). Much of this reluctance can be traced to social dis-
(Forbat, White, Marshall-Lucette, & Kelly, 2012). In the Forbat et al.
courses that limit the right to sexuality to an idealised young, hetero-
(2012) study, consultations between doctors and patients with pros-
sexual, able-bodied male and subsequently deny the sexuality of
tate cancer were observed. The findings suggested that comparative
those who do not fit in this model (Tepper, 2000).
studies are now needed to establish whether nurses, with the neces-
Sexuality relates to how people behave, the choices they make
sary skills and training, are able to address psychosexual concerns
and to who and what they desire (Weeks, 2002). Sexuality is often
more effectively.
considered to be a deeply personal matter, unique to each individual.
However, in clinical situations (which may not always be con-
Historically, sexual desire has been seen as “natural and automatic
ducive to communication about intimate concerns), it may surprise
and heterosexual and universal” (Gagnon & Parker, 1995, p. 12),
or sometimes embarrass men when sex is mentioned during a con-
while sex has often been viewed as “a privilege of the white, hetero-
sultation about their cancer. It is reasonable to suggest that training
sexual, young, single, non-disabled” (Tepper, 2000, p. 285) people.
and experience will be required on the part of the nurse to choose
The perception of sexuality as a normative construct was problema-
the best time to move the conversation on from initial embarrass-
tised and ultimately deconstructed as a result of the social transfor-
ment to uncover how MSM feel about their diagnosis, their psycho-
mations of the 1970s (e.g., the gay rights and feminist movements).
sexual recovery or adjustment to a new reality that may incorporate some degree of sexual dysfunction.
For several years, understandings of disability and illness were influenced by the medical model. According to this model, the
It is also reasonable to assume that most health professionals are
causes of illness and disability are located within the biological body
not homophobic; rather they may feel that it is safer to discuss erec-
(Stroman, 2003). The social model of disability has reframed illness
tile dysfunction in the context of vaginal penetration. This may be
and disability as a dynamic relationship between people with an
due to guidelines about onward referral emphasising this in relation
impairment or other health condition and their environment (Shake-
to the treatment options being offered.
speare & Watson, 2001; Stroman, 2003). The social model of disabil-
For the wider cancer care community, there is a need to under-
ity has helped relocate the emphasis from individual bodies to the
standing the wider context for gay and bisexual men and opportuni-
social environment within people live (Stroman, 2003). Similar per-
ties need to be given to nurses to explore and challenge any
spectives can be seen in the context of gay men where the individ-
preconceptions they may hold.
ual requirement for prostate cancer support eventually becomes a
This process could start by involving nurses with the gay and
wider social concern about inequalities. Furthermore, Crip theory,
bisexual community to become better informed about diversity,
with its close attention to issues of identity and power, has allowed
including sexual orientation, so that a conversation can be had at
a closer exploration of the intersections of disability, sexuality and
diagnosis about which aspect of treatment is going to affect men
queerness (McRuer, 2006).
the most, and where and when the best support can be offered.
Nonetheless, persons who do not fit the able-bodied/heterosex-
There is evidence of efforts being made to do this by bringing stake-
ual norm are often placed in invisible or marginalised spaces in the
holders together to share experiences and make information avail-
clinical arena; they are viewed as powerless people who need to be
able to the MSM community (Prostate Cancer UK & Stonewall,
protected or as simply asexual (Sakellariou, 2006). Debates about
2013). Gay professionals themselves have also contributed to this
sexuality are fundamentally debates about freedom of choice; they
change process by adding their own life experience and views to the
concern people’s ability to live the life they want to live—this does
literature (Cornell, 2005).
not stop when prostate cancer is diagnosed. The question we need
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to ask is what is permissible and what is not? In the words of Weeks
place primarily of vision and observation: doctors learn
(2002, p. 113), “What can be said or performed by whom in what
to see, to isolate, to recognise, to compare and thus to
circumstances (. . .)?”
match (or not), to scrutinise and then to intervene. (Sta-
Sexuality is also controlled through systems of gender and class,
ET AL.
cey, 1997, p. 55)
often functioning as a mirror of wider social attitudes towards difference. This can be shown, for example, through the ableism and
In prostate cancer, tumours are scrutinised through a combina-
heteronormativity that underpin institutions like marriage (although
tion of ever more sophisticated technologies such as computerised
this is now changing in several countries), church, employment and
scans, X-rays, tissue biopsies and blood tests. Novel technologies are
health professions, as several studies from the last decade illustrate
emerging constantly which allow images, and radiation therapy, to
€ndahl, Innala, & Carlsson, 2006; Weeks, 2002). (Jackson, 2000; Ro
be panned and rotated in three dimensions similar to what occurs in
The depiction of sexuality and cancer as separate facets of iden-
geophysics and astronomy. Mathematical modelling can also be used
tity supports a monodimensional depiction of men with prostate
to calculate the dosage of radiotherapy required to achieve maxi-
cancer as asexual service users who lack agency. When social beha-
mum “cell kill” (Hricack, Choyke, Eberhardt, Leibel, & Scardino,
viours and manifestations of sexuality are controlled by an intricate
2007).
nexus of expectations and beliefs (such as the availability of medica-
In such a culture, there is a jarring between the objective/scien-
tion to allow for erections), sexuality can be understood as a state
tific and the emotional/private/sexual self and may go some way to
rather than a possibility, and people who do not fit into this ideal
explain the dominance and popularity of heteronormative assump-
can risk being considered to be asexual (Sakellariou, 2006, 2012).
tions. These assumptions may simply feel safer as focusing on the
However, sexuality in the cancer clinic is, we suggest, a complex mix
heterosexual majority does not challenge the heteronormative status
of personal, social and clinical factors. The evidence would suggest
quo by considering the full range of human sexuality.
that sexuality is not a topic explored routinely—even in settings where men, who have been diagnosed and treated for prostate cancer, are being reviewed and the impact of their cancer treatment is being followed up (Forbat et al., 2012).
5 | THE IMPACT OF HETERONORMATIVE INEQUALITY ON PROSTATE CANCER CARE
Male sexuality itself is commonly viewed as phallocentric, reinforcing the centrality of physical performance (Drench, 1992; Shake-
The Inquiry into Inequalities in Cancer (All Party Parliamentary Group
speare, 2000). This can cause feeling of inadequacy and even
on Cancer’s, 2009) reported that in the United Kingdom, gay men
emasculation to men with prostate cancer. As Shuttleworth, Wedg-
have a greater incidence of anal cancer and cancers related to HIV/
wood, and Wilson (2012, p. 174) highlight, there is often a percep-
AIDS. However, we do not know whether there is also a difference
tion that “masculinity and disability are in conflict with each other
in the incidence of prostate cancer between gay and bisexual men
because disability is associated with being dependent and helpless
and the general population. Stonewall’s survey of the health needs
whereas masculinity is associated with being powerful and autono-
of gay and bisexual men reported that 10% of gay and bisexual men
mous.” Sexuality, however, is not based only on this mechanistic
of all ages have discussed prostate cancer with a healthcare provi-
view of penile strength and function (Milligan & Neufeldt, 2001;
der, while 68% of gay and bisexual men over the age of 50 had not
Tepper, 2000), but it can also be understood in terms of emotional
discussed this issue. This is slightly lower compared to men in gen-
closeness and intimate connection. While physical performance is
eral (Prostate Cancer UK & Stonewall, 2013, p. 8).
one of the ways through which people can achieve intimacy and
Gay men have reported that healthcare professionals do not
sexual pleasure, it can also be achieved through a variety of other,
always ask about sexual orientation in initial consultations, making
non-performance-based, means.
the assumption of heterosexual orientation (Mitteldorf, 2005). Fur-
The problem of introducing discussions about sex into clinical
thermore, men with prostate cancer have reported not disclosing
settings is reinforced in several studies including the auto-ethno-
their sexual orientation to healthcare professionals due to a concern
graphic Teratologies, by Stacey (1997). This provided, amongst many
about negative reactions (Filiault, Drummond, & Smith, 2008) or
other rich insights into ovarian cancer, a Foucauldian interpretation
because they think the clinical relevance of their sexual orientation
using narrative and visual constructions of cancer. Both the culture
will be disregarded (Katz, 2009). Recent research in this area has
and practice of medicine were altered when it became possible to
focussed on the impact of prostate cancer on the quality of life of
map the internal body so precisely:
MSM (Lee et al., 2015; Ussher et al., 2016) and is adding to the knowledge base as it allows new evidence to be synthesised as it
The clinical gaze, which is taken for granted in contem-
emerges (Rosser et al., 2016).
porary Western culture, is not the inevitable outcome of
In the most recent Cancer Patient Experience Survey in England,
scientific progress or technological invention, but rather
respondents who were identified as MSM reported more negative
originated in a very specific medical culture in which the
experiences in relation to communication, respect and dignity in regard
discourse of visibility became central. The clinic is a
to treatment, care and information within the National Health Service
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465
(Department of Health, 2012). A survey on gay and bisexual men’s
challenge facing prostate cancer service researchers is to recruit
health highlighted that 30% of gay and bisexual men who reported
MSM to such initiatives and to explore their needs in the face of the
accessing health services in the past year had at least one negative
negative attitudes that may exist in some settings. However, doing
experience related to their sexual orientation (Stonewall, 2013).
so holds the promise of change.
A small online focus group study (Thomas, Wooten, & Robinson, 2013) confirmed the earlier point that emotional reactions to a prostate cancer diagnosis in MSM was associated with requiring access
7 | CONCLUSION
to appropriate information and support. Other factors identified included the role of sexual side effects (such as erectile dysfunction) on their self-identity, a re-evaluation of life generally and the need to find the most suitable health professional who could explore their current and ongoing needs. By doing so, there was agreement that this improved the overall quality of care experience.
It is important to close the gap in sexuality-based inequalities in cancer treatment. This will require the concerted effort of different stakeholders and organisations. Some of the strategies that are required include learning from prostate cancer patient surveys, networking between cancer and gay organisations to share good practice, learning from people’s negative experiences, developing
6 | IMPLICATIONS FOR PRACTICE
resources for support groups and developing innovative resources (such as training materials) for health professionals to educate them about the importance of diversity awareness in the delivery of sup-
Cancer not only presents people with issues of finitude, but more
portive prostate cancer care.
importantly, it threatens the very foundation of life’s comforting rhythms. Stacey and Bryson (2012) argue that cancer survivorship is comparable with surviving any serious medical trauma, but also, in the case of MSM, from surviving within a normative cancer culture that has yet to accommodate diverse sexualities. Even though normative ideals of masculinity still shape how men understand their health and risks of prostate cancer, the encounter with healthcare professionals needs to accommodate diversity. The findings of Tho-
A first step in this process is to recognise the negative risks associated with heteronormative attitudes and assumptions and to question the extent to which cancer services may be ignoring the needs of those who do not identify as heterosexual. This paper has proposed that change can best be achieved by drawing on existing evidence, reviewing the experiences of MSM themselves and by making comparisons with other marginalised groups who may also be at risk of inequity during their cancer experience.
mas et al. (2013) and Forbat et al. (2012) confirm this assertion. Experiences of heteronormative discourse and practices can be particularly harmful to the psychological well-being of patients when
8 | RELEVANCE TO CLINICAL PRACTICE
cancer affects reproductive organs and sexual function. On these occasions, patients have to adapt to the short-term side effects of treatment as well as the long-term psychosocial effects of living with
•
Clinical practice is shaped by time pressures and provision of care
enduring sexual dysfunction. Cancer providers should address differ-
that is directed towards the majority. These can lead to assump-
ence in sexual orientation to avoid accentuating co-existing health
tions about the sexual orientation of cancer patients, including
inequalities (Peate, 2011). The Cancer Reform Strategy in England
men diagnosed with prostate cancer. When heteronormative
(Department of Health, 2009) emphasises the requirement for every
assumptions dominate this can lead to embarrassment and
person affected by cancer to receive world-class services at each
inequality in provision of support to MSM.
stage of the disease and treatment. Despite this, inequalities remain
•
Prostate cancer service providers should be aware of the diver-
between different groups of people in terms of incidence, access to
sity culture that exists in their organisations and monitor the
services and treatment, patient experience and outcomes (Boehmer,
extent to which heteronormative assumptions are acknowledged
Miao, & Ozonoff, 2011). We have argued here that LGBT groups
and challenged.
may face additional problems as result of heteronormative clinical
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To promote diversity and equality in cancer care for all LGBT groups.
cultures that fail to appreciate diversity in those accessing their services. It is also important to highlight that the heterosexual majority,
CONTRIBUTIONS
gay, bisexual and transgender populations will all face the risk of prostate cancer in the future, making it even more important to
DK suggested the focus for the paper and led the preparation of the
allow diversity to be acknowledged and accommodated.
manuscript, DS, SF & VS contributed to the clinical and theoretical
Participatory design approaches of support services for MSM
discussion, analysis and manuscript preparation.
may offer one approach to ensure that personal experience can be used to challenge aspects of services that fail to meet their needs (Al-Itejawi et al., 2015). Such approaches employ a stepwise approach of feedback on usability at the preconceptual, prototype and usability phase of service design for diverse groups. The
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How to cite this article: Kelly D, Sakellariou D, Fry S, Vougioukalou S. Heteronormativity and prostate cancer: A discursive paper. J Clin Nurs. 2018;27:461–467. https://doi.org/10.1111/jocn.13844
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