Constructions of sex and intimacy after cancer: Q methodology study of people with cancer, their partners, and health professionals

More than 12.7 million cases of cancer are estimated to have occurred worldwide in 2008 [1], with over 100,000 new cases diagnosed in Australia [2]. With survival rates at 5 years currently over 60% [2], increasing numbers of individuals are living with cancer, leading to a focus on the quality of life of survivors, and their families. Sexual wellbeing is a central component of quality of life [3], and there is a growing body of research demonstrating the association between cancer and changes to sexuality and intimacy [4‐7]. For example, women with cancer have reported reductions in sexual interest and vaginal lubrication [8], early menopause [9], and dyspareunia [10‐12], associated with diminished body image [13, 14] and sexual confidence [8, 15], as well as dissatisfaction with intimate relationships [16]. Similarly, men with cancer have reported changes in ejaculatory capacity, erectile potential [17], orgasm, and urinary incontinence [18], leading to a diminished sense of manliness, self worth, and sexual confidence [18, 19]. These changes can lead to significant distress, which in some instances can be experienced as the most difficult aspect of life following cancer [20].

It is now widely recognised that obtaining information about sexual changes after cancer is associated with positive psychological and sexual adjustment [15, 21], leading to the recommendation that education and training of health professionals working in oncology should include a focus on sexual issues [22, 23]. However, in a review of the construction of patient sexuality in the cancer research literature, it was reported that the focus is predominantly on the relationship between cancer treatments and sexual dysfunction, with ‘sex’ conceptualised as penis-vagina intercourse [24], described elsewhere as the “coital imperative” [25], p. 44, [26], p. 229. This serves to position sexuality within a narrow hetero-normative framework [27], negating intimacy and non-coital sexual practices, as well as the complex social, psychological and relational context within which sexuality and intimacy are experienced [24, 28].

These same narrow constructions were identified by Hordern and Street (2007a) in interviews with Australian health professionals working in cancer care, where sex was positioned as secondary to survival, or as a difficult topic to discuss. In contrast, patients and partners report that they want information and support about sexual changes after cancer [10], with many individuals adopting a “plastic” view of sexuality [23], wherein the meaning and practice of sex and intimacy can be renegotiated after cancer to include non-coital sexual practices [29]. Given these “mismatched expectations” [23], p. 224 it is not surprising to find that many people with cancer and their partners report a high level of dissatisfaction with health professional communication about sex and intimacy [5, 10], as well as reporting that their sexual information and support needs are not being met [30].

Since Hordern and Street’s research was conducted, there has been a proliferation of research documenting changes to sexuality after cancer [6, 7, 31], leading to renewed emphasis on health professional communication and support [22, 24, 32, 33]. This begs the question: does the “mismatch” between health professional and patient perspectives on sexuality and cancer remain? The aim of the present study is to address this question, by examining the perspectives of health professionals alongside those of people with cancer and their partners.

Previous research on cancer and sexuality has focused largely on cancers that directly affect the sexual or reproductive organs, such as prostate, testicular, breast and gynaecological cancer [11, 12, 34, 35]. However, there is evidence that cancer also has an impact on the sexual wellbeing of people with non-reproductive cancers, such as lung and colorectal cancer e.g. [36, 37]. Equally, while there is evidence that changes to sexuality are experienced by the intimate partners of people with both reproductive and non-reproductive cancers [5, 38], partners are rarely included in research on cancer and sexuality. The aim of this study is to examine constructions of sexuality adopted by a range of health professionals working in cancer care, as well as those of patients and their partners, across a range of cancer types, using Q methodology.

Q method begins with a Q set or sample which is composed of statements, rather than participants, reflecting Q’s focus with discourses and how discourses variously come together [44]. A participant group (P set) is selected from as many of the obviously pertinent demographic groups as possible for the topic [51]. Unlike traditional rating scales that work with absolute responses to statements, Q sorting involves the ranking of statements with relative agreement or disagreement, where statements only become meaningful in relation to position of other statements [43]. In Q analysis, an inverted factor analytic procedure, overall configurations of statements, or factors, are produced that are shared by the participants who load onto to that factor, a procedure that detects associations between patterns expressed by persons [43]. These features of the Q method are described below for the current study, with further description of the principles and method of Q methodology described elsewhere [51].

Centroid analysis produced 7 factors accounting for 68% of total variance. Following varimax rotation, six factors had eigenvalues greater than 1.0, with the first three factors additionally defined by factor exemplars with factor loadings greater than 0.5. As an estimate of the construct validity of each factor, composite reliability coefficients (r_c) greatly exceeded the minimum acceptable value of > 0.7. Table 1 shows the factor characteristics for these factors. Table 2 presents the socio-demographic and clinical profile for the Q sorts defining each significant factor. Factors scores of each statement across all three factors are displayed in Table 3. Statements discriminating among the factors are highlighted. In the factor descriptions, bracketed notations represent statement rankings within factor arrays, in that (13: +5) indicates that statement 13 is ranked in the +5 (most agree with) position.

This study was designed to explore the complex constructions that people with personal and professional experience hold about sexuality and intimacy in the context of cancer, with the aim of uncovering discrepancies and commonalities between professional and patient or partner perspectives. In line with the expectations of finite diversity [42], three distinct perspectives were identified reflecting limited variability in the ways in which sexuality is constructed post-cancer. These three accounts represent shared viewpoints about the importance of sexuality to quality of life and relationships, open communication, the role of health professionals, and dispelling falsehoods and misinformation about sexuality and cancer. However, the factors do vary in their evaluation of the importance, and priority of these concerns. Careful consideration of the statements endorsed within each factor along with the socio-demographic characteristics of participants who defined these factors and their interview comments, allowed for a more nuanced interpretation of the salient beliefs represented in these distinct viewpoints.

The first factor perspective, entitled “communication – dispelling myths about sexuality and cancer” positions communication as central to the acceptance of a range of satisfying sexual and intimate practices post-cancer. This viewpoint emphasizes the active involvement of health professionals in discussing the effects of cancer upon sexuality with people with cancer and their partners, as is emphasised in the PLISSIT [58] and BETTER [24] models of health professional communication. This viewpoint also endorsed open communication amongst couples and rejected coital imperative constructions of sex.

For Factor 1, three-quarters of the defining participants were health care professionals with an average of nine years working in oncology. The perspectives evident in this factor contrast with those reported by Hordern and Street (2007a). This could be interpreted as evidence that recent health professional education and training about the importance of the discussion of sex in the context of cancer has had a positive impact. In the interviews which followed the Q sorts, all participants loading on this factor gave accounts of discussing sex and intimacy with many of their patients. However, sexuality was acknowledged to be a difficult subject to address which was often avoided because of patient, health professional, or situational factors [59]. This suggests that the perspectives provided in this study could reflect health professionals adopting a ‘best-practice’ position in relation to the discussion of sex in the context of cancer, knowing that this was the focus of the research study. In this vein, one of the doctors told us:

“Health care professionals should discuss with people with cancer how cancer affects their sexual relations – well I know that that is something that we should do and I’ve put that down as strongly agree. I think not every health professional is comfortable with that and it’s being comfortable with your own (sexuality), being comfortable with your communication skills, being comfortable with the people that you’re sitting with and being comfortable with your role” (female, 45yrs).

Another doctor told us: “what we think we should do and what we actually do are different things often” (male, 35yrs). This suggests that education of health professionals about the importance of sexuality after cancer may not be sufficient to change practice. Attention needs to be paid to the barriers that prevent health professional discussion of sexual matters. Equally, as all of the participants in the present study were volunteers, and a significant number of the participants who loaded on this factor were allied health professionals, it cannot be concluded that a proactive perspective about health professional communication is widely shared; further research with a randomly selected group of health professionals working in oncology is necessary to determine the representative nature of these views.

The second factor, “valuing sexuality across the cancer journey,” centres on the theme of normalizing the experience of sex after cancer through the renegotiation of sex and intimacy, suggesting a plastic model of sexuality was adopted, associated with rejection of the coital imperative [28]. Open communication and discussion are emphasised as important in maintaining relationships, sexuality, and quality of life, but in contrast to Factor 1, it is communication within the couple dyad that is highlighted rather than communication with health care professionals. This supports recent research which reported that couple communication about sex was a priority for women with breast cancer, and was valued more highly than communication with health professionals [10].

For Factor 2, three-fifths of defining participants were men, with the same proportion reporting an experience with a reproductive cancer. Previous research has reported that a majority of men with prostate and testicular cancer seek to maintain coital sexual activity after cancer, through medical assistance, or the use of sexual aids [17, 60, 61]. However, the finding that defining participants in Factor 2 valued sexual renegotiation, supports previous accounts of men “working around the loss” when dealing with sexual changes after prostate cancer, expressing intimacy through oral sex and touch, rather than penetration [62]: 312, [63], and partners renegotiating sex after cancer through exploration of genital and non-genital intimacy [29].

The third factor perspective, “intimacy beyond sex,” presents the view that even though sex may not be wanted, desired, or even possible following cancer, quality of life and relationship satisfaction are achieved through communication and non-genital intimacy. Similar to Factor 2, but in contrast to Factor 1, communication within the couple dyad is emphasised. This perspective presented the most inclusive conceptualisation of non-coital or non-genital practices as expressions of intimacy, conceptualising sex as a private matter for couples, and not seeing a sexual relationship as central to quality of life in advanced stages of cancer. This stands in contrast to previous reports of cessation of sex and intimacy when coital sex is not possible after cancer [5], and reports of high levels of distress associated with sexual changes after cancer [12].

Factor 3 was equally defined by men with cancer and women partners of a person with cancer, the latter being most strongly represented in this factor. This suggests that performance of coital sex does not have to be central to relationship satisfaction or gender identity, and that sex is not always a major concern for couples with cancer. Contrary to phallocentric models of masculinity [64], it also confirms previous findings that some men can feel “bloody rapt” (very relieved) [65]: 59] about the possibility of sex without penetration as it serves to reduce performance pressure and offers escape from the “rigidity of what it means to be a man” [17: 1605]. Equally, the high representation of women partners in this factor supports previous research which reported that a significant proportion of women partners of men with prostate cancer did not encourage help-seeking for a sexual problem, with many women resigned to, or accepting of, sexual changes [60]. Sex which is less focused on penetration, and more focused on other forms of intimacy, has also been reported to be preferred by many midlife and older women [66‐68], with hugging, kissing, touching [69], as well as relationship closeness [70], being included in definitions of sex. Cancer may serve to legitimate such women resisting the coital imperative, and exploring non-coital, non-genital intimacy.

A few items were viewed in a broadly similar way across the factors. This common perspective was concerned with de-stigmatizing cancer and sexuality and challenging dominant discourses around the centrality of penetrative sex. This suggests that acceptance of the importance of sex and intimacy for people with cancer and their partners, as well as rejection of the coital imperative, particularly in cases where coital sex is difficult or no longer possible, was a construction shared universally by participants. This suggests that research and interventions focused on the experience of sex in the context of cancer which concentrate on coital sex are not encapsulating the broad conceptualisation of sex and intimacy held by people with cancer and their partners, as well as many health professionals working in oncology. It also suggests that Australian health professional and patient perspectives on sex after cancer may no longer be as “mis-matched” as previously reported [23].

There are a number of strengths and limitations of the present study. The strategic nature of our participant sampling did ensure that the perspectives gained reflected experiences of cancer in a broad sense; across types of cancer, relationship status, sexual identity, and patient, partner and professional experience. However, the sample was not ethnically or culturally diverse as most participants were of white-Australian ethnicity. Also, patient and partner participants were, on average, in their middle years. Conclusions cannot be drawn about different constructions amongst such groups, and further research could examine how age and cultural background influence beliefs about sexuality and intimacy after cancer. Equally, all participants volunteered to take part in a study about cancer and sexuality, which meant that they were likely to be comfortable about addressing sex as an issue, or had a particular concern or viewpoint they wished to impart to the research team. Individuals who are not comfortable about discussing sex and intimacy, are very distressed about sexual changes and not able to renegotiate sexual practices, or who do not feel that sex is an important issue to consider in the context of cancer, may express different viewpoints. Other research has demonstrated that many individuals with cancer experience distress as a result of changes to their sexuality and their inability to perform coital sex [4]. Further research on this issue could usefully be undertaken with a randomly selected group of people with cancer, partners, and health professionals. Recognition of the importance of sexuality in the context of cancer and the need for health professionals to take responsibility for initiating discussions around this issue has been emphasized in Australian clinical practice guidelines [71‐73]. The findings of this study need to be considered within this context with further research examining experiences in countries where recognition of the importance of sexuality in the context of cancer is not currently reflected in health policy and practice.

In conclusion, this study has demonstrated the complexity of perspectives about sexuality and intimacy post cancer, which has practical implications for those working in cancer care and survivorship. The constructions of sex and intimacy adopted by health professionals shape their willingness to raise the subject with their patients, as well as the specific information and advice they impart if such discussion is undertaken [23, 54], and are therefore worthy of investigation. Constructions of sex also serve to “set the horizon of the possible” in terms of sexual desire and behaviour [74]:16], and influence individuals in their the ability to renegotiate sexual practices in the context of cancer [28, 29]. Therapists and other health professionals can play an important role in ameliorating concerns surrounding sexual wellbeing after cancer, by opening and facilitating discussion of sexuality and intimacy amongst couples affected by cancer, as well as providing information that normalizes a wide range of sexual and intimate practices, in order to facilitate such renegotiation. However, it is also important for health professionals to be aware that some individuals consider sexual matters to be a private concern, preferring communication to remain within the couple relationship, and non-sexual intimacy to be more important than sex.