Representations of Nurses Regarding Sexuality of Women Treated for Breast Cancer in Brazil

ARTIGO ARTICLE 2049

Representations of nurses regarding sexuality of women treated for breast cancer in Brazil

Representações das enfermeiras sobre a sexualidade de mulheres tratadas de câncer de mama

Concepciones de enfermeras sobre la sexualidad de las mujeres tratadas por cáncer de mama

Elisabeth Meloni Vieira 1 Nicholas John Ford 2 Manoel Antonio dos Santos 3 Lílian Cláudia Ulian Junqueira 3 Alain Giami 4

Abstract Resumo

1 Faculdade de Medicina de The development of new treatments has im- O desenvolvimento de novos tratamentos me- Ribeirão Preto, Universidade de São Paulo, Ribeirão Preto, proved survival and quality of life among can- lhorou a sobrevivência e a qualidade de vida dos Brasil. cer patients. Nurses are expected to answer pacientes de câncer. Espera-se que as enfermei- 2 University of Exeter, Exeter, questions and to provide orientation regarding ras forneçam orientações sobre a sexualidade United Kingdom. 3 Faculdade de Filosofia, patients’ sexuality since it is an important as- dos pacientes, considerada importante aspec- Ciências e Letras de Ribeirão pect of life. The main objective of this paper is to da vida. O principal objetivo deste artigo é Preto, Universidade de São to understand the representations of sexuality compreender as representações da sexualidade Paulo, Ribeirão Preto, Brasil. 4 Institut National de la Santé among nurses working with women who survive entre as enfermeiras que trabalham com as mu- et de la Recherche Médicale, breast cancer after diagnosis and during treat- lheres sobreviventes ao câncer de mama depois Paris, France. ment assuming that their representations may do diagnóstico e durante o tratamento, conside-

Correspondence affect communication with the patient. This is rando que estas representações possam afetar a E. M. Vieira a qualitative study using an in-depth guideline comunicação com o paciente. Este é um estudo Departamento de Medicina which involved interviews with 28 nurses living qualitativo que entrevistou 28 enfermeiras que Social, Faculdade de Medicina de Ribeirão Preto, and working in the southeast of Brazil. The nar- vivem e trabalham no Sudeste do Brasil. As nar- Universidade de São Paulo. ratives were submitted to a content analysis and rativas foram submetidas à análise de conteúdo Av. dos Bandeirantes 3900, categories of representations were identified and e as categorias das representações foram identi- 2o andar, Ribeirão Preto, SP 14049-900, Brasil. are discussed here. Several representations of sex- ficadas e discutidas. Várias representações sobre [email protected] uality were found in the nurses’ discourses. Some sexualidade foram encontradas nos discursos of the nurses’ representations may be expected to das enfermeiras. Algumas delas podem ocultar a hinder their ability to provide helpful orienta- habilidade de transmitir orientação em relação tion regarding the sexual lives of these patients. à vida sexual desses pacientes.

Breast Neoplasms; Sexuality; Nurses Neoplasias da Mama; Sexualidade; Enfermeiras

http://dx.doi.org/10.1590/0102-311X00158512 Cad. Saúde Pública, Rio de Janeiro, 29(10):2049-2056, out, 2013 2050 Vieira EM et al.

Introduction or even ignore some aspects of sexuality which may be important to patients. Such varied com- Breast cancer represents the most prevalent can- munication is likely to be based on nurses’ own cer in women in the world. Annually it consti- assumptions, concepts and beliefs pertaining to tutes 22% of all new cancer diagnoses in women the subject 14,15. In order to understand these im- and 7% of the 7.6 million cancer-related deaths portant representations we developed the pres- internationally 1. ent study having in mind the following question: Breast cancer has been the type of malignant how do nurses address sexuality as part of the neoplasm of greatest incidence and mortality health care for women recovering from breast among Brazilian women. In 2012 52,680 new cas- cancer? es were estimated, i.e., 52 new cases per 100,000 The objective of this study was to understand women 2. Over recent years, a significant increase the representations of how sexuality of women has been reported among young women up to undergoing treatment of breast cancer is under- 35 years of age 3. Similarly in the United States it stood by the nurses responsible for those patients is the most common cancer in women, but due after diagnosis and during treatment. to the advances of therapy and the participation in screening programs, mortality rates are now decreasing. The survival of women with breast Methods cancer is considered a process that begins at diagnosis and does not cease, lasting until the end This is an exploratory qualitative study carried of life 4, so the rehabilitation of the survivors of out with 28 nurses living and working in the breast cancer takes place permanently and re- Southeast of Brazil. We identified all nurses work- quires attention in all spheres of daily life 5. Stud- ing in cancer clinics (ambulatories and hospitals) ies have shown that survival is associated with in Ribeirão Preto, a city in São Paulo State with several changes impacting upon different phases a population of half a million people, and con- in the lives of women, each phase with its specific ducted interviews. Only two nurses refused to demands 6,7. be interviewed. All but one nurses in the sample Sexuality is one of the areas potentially affected were women, aged between 23 and 60 years old, after breast cancer and because of its impact and with between two and 30 years of work experi- significance in the patient’s life, demands atten- ence with breast cancer patients. The majority, tion alongside that given to diagnosis and treat- 16 of them were married with children. Only one ment 8. Sexuality encompasses intimate feelings was cohabiting, nine were single and two were of individuality and is central to a person’s sense divorced or separated. Regarding sexual orienta- of wellness and health 9. The majority of research tion, one was homosexual. 20 of them had at- on breast cancer is focused on the period of di- tended a “specialization course” including 12 in agnosis and treatment and few publications are oncologic care, four had a Resident Certificate dedicated to investigating the impact of cancer and four had just a nursing degree. Only one upon sexuality and sexual life after treatment 5. reported she had cancer. We used a semi-struc- A literature review concerning the sexuality of tured interview guideline developed by a simi- women with cancer has identified important gaps lar collaborative study conducted in France 14. in the research of the subject. According to some A deliberately open and broad trigger question authors this has led sexuality-related breast cancer was used to start the interview: “How do you deal interventions to be based more upon anecdotal with sexuality in your professional practice?”. It experience and the predispositions of the special- is important to note that the interview explored ist than upon sound evidence from the social sci- both nurses general feelings about sexuality in ences 8. Some studies have reported that health their working practice, as well as its more specific professionals do not usually address sexual is- bearing upon dealing with the sexuality of pa- sues among breast cancer survivals 10,11. tients being treated for cancer (thus some quota- Among professionals of the health team, tions presented below include reference to male nurses are given an important role since they are patients). required to answer questions and provide orien- The research project was approved by the tation in several aspects of their patients’ lives in- Committee of Ethics in Research at the Escola cluding their sex lives. Some authors emphasize de Enfermagem de Ribeirão Preto, Universi- the need to improve communication on sexuality dade de São Paulo in August, 2009 (protocol n. between nurses and patients in order to deliver 1019/2009). All participants were asked to read better care 12,13. Representations about sexual- and sign a form detailing terms of consent and ity can affect communication since nurses can their free will in participating in the interview, put more or less emphasis upon different aspects in which confidentiality and privacy of informa-

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tion were guaranteed, according to Resolution n. Holistic sexuality: sexuality as a basic human 196/96 of the Brazilian National Health Council. need for health and wellbeing The interviews were audio-tape recorded and transcribed in full. Afterwards they were subject- In this category representations of sexuality were ed to a content analysis and thematic categoriza- included that are similar to the World Health Or- tion in which the following range of representa- ganization (WHO) definition stated in 2002 17 (p. tions were identified and labeled. 4): “[Sexuality is] an integral part of the personali- In order to analyze the data, the following se- ty of everyone: man, woman, and child. It is a basic quence of content analysis was used: preparation need and an aspect of being human that cannot of the material through the interview transcripts, be separated from other aspects of life. Sexuality coding based on the previously defined thematic is not synonymous with sexual intercourse, it is script and data interpretation and description of not about whether we have orgasms or not, and it each category 16. After reading and identifying is not the sum total of our erotic lives. These may each category in the transcriptions of interviews be part of our sexuality but equally they may not. we organized similar narratives under each label. Sexuality is so much more: it is in the energy that We developed seminars for interpretation and motivates us to find love, contact, warmth and in- analysis, defining the meaning of each category, timacy; it is expressed in the way we feel, move, with the research team discussing each inter- touch and are touched; it is about being sensual pretation. A review of the relevant social science as well as being sexual”. literature was undertaken in order to link the Nurses’ discourses which presented concep- meanings of each category identified to themes tions about sexuality as being more than merely in the more general research. a physical aspect of the body, not limited to sexual intercourse or the physiological response of genital organs were classified in this category. Results From this perspective, sexuality also includes sexual orientation, sexual behavior, feelings of The representations of sexuality found in the love and what may be thought of as sexual com- nurses’ discourses were interpreted and or- portment according to sexual scripting. This ganized according to the following six sets of category also presents the idea of sex as being meanings. healthy, important for wellbeing, connected to affection and human development, and such Sexuality as dangerous and risky for diseases discourses are expressed with words such as desire, expectations, wellbeing, self-esteem, Some nurses shared representations of sexuality happiness, being a man or woman, feelings and that were limited to sexual function (sexual activ- self-image. ity or intercourse) and linked to the functioning “...I understand that sexuality is not only sexual of genital organs (or breasts) in a spectrum from intercourse, it is everything, the way people dress, the normal to the pathological. So, this concept how they act, behavior…all this is part of sexual- of sexuality is focused on the body, especially on ity…very important for wellbeing and self-esteem” the genitals, and can be considered as a subject (Nurse 2). pertaining to sexual disorders or as a means for disease transmission. These are concepts associ- Sexuality as a prerogative of youth ated with the risk of contamination and disease transmissions (STI and AIDS). On the other hand, For some nurses women’s age is the main de- this representation also involves the concept of terminant of the consequences breast cancer health prevention and the orientation for con- produces on sexuality. Several ideas presented dom and contraceptive use. In this sense sexual- by them involved reference to age. Some nurses ity is seen in terms of the traditional, rather nar- believed that younger women suffer more sexu- rowly focused, biomedical model. al alterations due to cancer than older women “How do I approach sexuality? I do the preven- since the former have more sexual desire. For tion of STI and orientation about sexual pathology, many of these nurses sexual desire was consid- right? It would also be an interesting area of how to ered to decrease as people grow older with sexu- deal with the patient when he/she reaches the hos- ality becoming less important to elderly people. pital and you have to give him a swab, you have to Some nurses argued that sexual activity could examine the [genitals], right?” (Nurse 1). be unpleasant in mature age and for this reason they reported that some women use the treatment of breast cancer as an excuse to interrupt sexual activities.

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Women who had finished their reproductive hair, which are seen as symbols of femininity and cycle would suffer fewer consequences to their sexuality. They also mentioned partner rejection, sexuality after breast cancer than younger wom- divorce or separation and social isolation. The en who are still “building” their reproductive life. breast reconstruction and the use of prostheses So from this perspective the meaning of sexual are considered important resources in restoring life for younger women is centered around re- identities as well as a form of coping with the dis- production and thus sexuality should be more ease and treatment. important to them. So, sexuality is represented as “Even patients who therefore refused to do a reproductive sexuality. mastectomy because of the same image, self-image, Such nurses also felt age to be a factor to in- then also lose their hair, you know? They face a fluencing women’s freedom to express concerns lot of these difficulties, the limitations of the arm, about sexuality. For some nurses younger wom- mastectomy, all this seems to bother them. Also en would express their concerns about sexuality the person did not want a mastectomy in any way more easily than older women, since they con- because of the impact it would cause in her life” sidered the latter would have greater difficulties (Nurse 4). with the subject, due to their adherence for instance to more traditional religions norms, cul- Sexuality and love tural barriers and taboos. So, these nurses place a priority on orienting younger women on sexual In this category the representation of sexuality is matters because in their view they would need clear: love and sex must be experienced together, more advice and ask more directly for such ori- with sex being considered a complement to love. entation, which in a sense authorizes the nurse For these nurses love (in a relationship) is more to talk about the subject. Nurses feel that it is important than sex. There is a sense of a clear more difficult to approach the subject with older devaluation of the significance of sexual inter- women because of the cultural barriers, and they course. There is also something of an expression feel that to do so is to be invasive of the patient’s of gender roles and sexuality, with an empha- privacy and modesty. sis that while women value love and romance, The link between youth and sexuality is also men would place a more primary value upon expressed when considering the need for breast sex. From this perspective love and sex must be reconstruction after mastectomy. Some nurses experienced together. Some discourses express think that young women have more need to re- the idea that sex is a complement to love and in construct their breasts than older women. They most cases sex without love is unacceptable. The say that there are older women who do not want presence of love will determine the level of so- breast reconstruction. cial support the woman will receive after breast “Old ladies have more barriers to talk about cancer. The chances of the future continuation sex…I think so…with young people it is different… of the partnership of the couple is considered to to have cancer is much worse for young people than increase when there is love, as well as the com- old people because those already have had chil- mitment of care between partners and there is dren…” (Nurse 3). more assistance to the partner during treatment. There is the acknowledgment that the treatment Sexuality as beauty and body image of breast cancer has an influence beyond sex, affecting the relationship and the quality of the af- In this representation sexuality appears to be as fection between partners. an expression of an idealized pattern of beauty “I think so, even if there is not sex, or the sex being connected to body image and self-esteem. act, but at least one is living a good life, loved, feel- So this representation comprises some ideas re- ing loved, to love, a husband’s touch, the family’s lated to the consequences of how breast cancer touch. Many times when this does not happen, it will deeply affect sexuality because it will affect hinders all treatment. I think it is not necessary to beauty, body-image and women’s behavior. Some have the act, sex itself, but that rather that coex- aspects such as self-esteem, wellbeing and em- istence [in the relationship] is pleasant, healthy, barrassment were also included here. Although feeling loved, feeling that people are worried about having a social and psychological dimension it her, with her treatment and improvement from it” may be linked to the category of holistic sexuality (Nurse 6). noted above, though the emphasis here is put on the body image and mental wellbeing aspects. Erotic and sexual fantasy The testimonies reveal women’s behaviors and symptoms observed by the nurses including de- Nurses reveal that in the exercise of their profes- pression or acceptance of losing the breast and sion, sexuality appeared sometimes as erotic fan-

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tasy for patients, especially when they are manip- who shared a more holistic and personal per- ulating their bodies. They also express patients’ spective 13. This range testifies to the diversity reactions as expressions of sexuality. Nurses talk- in the sample, and highlights the scope for an ed about manipulation of patients’ bodies and exploration of the differences. their own sexuality facing certain situations. The full interviews obviously presented a “Sexuality? I think so, part of dealing with the much fuller perspective of the nurses’ ways of naked [patient], [their] being naked, touching, ex- thinking about the sexuality issues among pa- posure of intimate parts, of talking pertaining to tients recovering from breast cancer, than this sexuality, subjects such as erections, wanting to necessarily condensed presentation of findings make love, sex. Sometimes there can be a misun- and quotations. derstanding that in providing care for the patient, It is important to analyze the findings keep- it is construed as tenderness, a closeness that can be ing in mind that the particularities of Brazilian seen as sexual, though, is pretty much it, so I play, sexual culture can influence the findings (health you know?” (Nurse 7). system and nurse training). For instance it is cru- “...and when you change a diaper, if you have cial to consider sexuality and the life course, gen- to perform some such procedure…then, at times der constructions, the importance of the “body like this, we respect [the patient] a lot and you see beautiful” and the personal and emotional con- that side of not wanting to invade the privacy of the duct of relationships 18. patient, maintaining an appropriate facial expres- Furthermore Giddens’ 19 notion of “plastic sion and respecting him while we are providing this sexuality” with its emphases on reflexivity and care” (Nurse 8). dynamism provides another useful theoretical basis. For instance, in historical terms Brazil has only relatively recently passed through the de- Discussion mographic transition from high to low fertility, with its attendant separation of sex for repro- Following the outline of the six thematic dimen- duction and pleasure that is so basic to “plas- sions of the representations of sexuality identi- tic sexuality”. Thus with reference to the gender fied in the interviews with nurses we now turn structuring of sexual expectations although we to an attempt to synthesize these findings. The can find modern liberal and reflexive tenden- findings are thus discussed in relation to general cies, there is also clear evidence of what may be health and medicine discourses, Brazilian sexual thought of as more traditional sexual cultural culture and broader social theories regarding sex- values and dispositions. uality. From the outset of this discussion it may Individual nurses’ sexual propensities and be noted that there is both a wide range of ex- dispositions and the ways they impact upon their pressions as presented in the findings above, and approach to addressing the sexual dimensions of that nurses sometimes expressed more than one patient care may also be most usefully explored of these representations of sexuality. The main in relation to Fisher’s et al. 20 notion of the “eroto- themes that emerged from the analysis of the philia-erotophobia” continuum. In brief nurses transcripts may be viewed on two levels. On the that feel more open towards, and comfortable first level there are the expressions of their nurs- with their own sexuality would be expected to be ing role regarding sexuality, variously expressed more proactive towards, and caring of, the sexu- in terms of the traditional biomedical model and ality dimension of patients recovering the treat- the broader psychosocial holistic model. On the ment of breast cancer. second level there are the themes pertaining to As in all countries probably the greatest sex- the sexuality of cancer patients, which have been ually-related issues following mastectomy and summarized as pertaining to wellbeing and body chemotherapy for women were the implications image, sex as sexual intercourse, sex as the pre- for body image and sense of wellbeing 8,21. Both rogative of youth, and some specific reference to the loss of breasts and hair as symbols of femi- love and relationships. ninity are potentially traumatic in their effects The findings may most usefully be consid- on self-image. It is possible to surmise that given ered within the light of two structuring prisms, the enormous importance accorded to the “body firstly the contested and competing discours- beautiful” in Brazilian culture these concerns es of the bio-medical and holistic, such as the are felt especially strongly here. These matters WHO concept of sexual health, and the personal were explicitly raised and discussed by two thirds sexual philosophies and predispositions of indi- of the nurses interviewed. Many of the nurses vidual nurses. The nurses can be divided fairly showed a rich appreciation of the negative ef- evenly between those who expressed a primarily fects on their patients’ sense of body image. They bio-medical model of sexual health and those variously alluded to the effect on self-esteem,

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even depression, general wellbeing and the loss sexuality was a much less important matter for of confidence in sexual interaction. women who had finished their reproductive In general, not surprisingly, they discussed career, rather than those younger women who the negative impacts, although some nurses are still building their life. This idea of sexuality went on to talk more positively about the way being primarily concerned with reproduction they had noticed some women had been able reflects more traditional views, and may well be to cope surprisingly well with, and adjust to, the related to the relative recentness of Brazil’s de- changes. Nurses reported that many women also mographic transition and reproductive revolu- expressed anxieties regarding the possible ef- tion. Gidden’s 19 notion of a modern reflexive fects on their relationship, and fear of losing their “plastic sexuality” is predicated on this massive partner. Some authors reported that separations cultural transformation, which for the first time were initiated by men unable to cope with their in human history has allowed women to sepa- partner’s cancer, but also reported a proportion rate sex for reproduction and sex for pleasure. of patients and their partners who have been Running through all these “ageist” ideas that shown that breast cancer created a greater sense the sexuality of older women recovering from of closeness 22,23. cancer treatment is less important, is the crucial About half of the nurses interviewed dis- significance of the gender structuring of sexuality cussed sex solely in terms of sexual intercourse. that pervades Brazilian culture. When nurses say They discussed patients’ anxieties concerning “sex is less relevant to older people”, they are pri- whether and in what ways their treatments may marily referring to women (their patients in this result in lasting impacts on their engaging in case). The social expectation of continued sexual intercourse. It has to be recalled here that treat- desire and even multiple partners for men is in ment does involve suspending intercourse for a some ways seemingly more acceptable within period of one month. Some nurses commented the culture 24. By contrast women who have mul- that when asked such questions they felt at a tiple partners would be strongly stigmatized. Al- loss, feeling unable or unsure as to how to an- though Ford et al. 24 showed in their study of male swer. Some of them revealed that they need more sexuality in São Paulo that there was a substantial information and training on this subject. class difference in the adherence to, and expres- The third most common theme (found in 11 sion of, “macho” values which would denigrate of the 28 cases) recurring in the nurses’ inter- the sexual role of older women, such values are views was that the main sexual repercussions of still seen to pervade much of the thinking of these cancer treatments depended upon the age of the nurses. In terms of social strata the nurses would patient. Some nurses expressed the view that it primarily be drawn from lower income members was unnecessary or even invasive to raise sexual of the middle class. An important point seems to matters with older patients. This point also links be that we are encountering sexual expectations with the previously mentioned theme of ‘sex as that are almost taken for granted, rather than a sexual intercourse’, as some nurses seemed to real understanding of these women’s actual sex- forget that sex is far broader than intercourse or ual lives (as expressed not only in sexual behavior even genital activity, and that they should have surveys but also some of our own interviews with a role in assisting their patients to continue to recovering patients). A very important finding of enjoy intimacy, warmth, caressing and so on in this study is that nurses are too ready to dismiss their relationships, rather than “closing down” the need to address sexual re-assurance among that very important dimension of their lives. The older women. second rationale (reinforcing the first) was that Perhaps as a welcome corrective to this em- younger women find it easier to express their phases on “sex as sexual intercourse” and the sexual concerns than older women. Part of the denigration of age, a small number (6/28) of rationale expressed here was that older women nurses alluded to the crucial importance of love are more inhibited by a range of religious and in dealing with patients’ sexual adjustments. cultural taboos. Thus nurses prioritized the Four sets of links have been identified in the in- discussion of sexual matters with younger pa- terviews; that women place much more empha- tients because they believed they have both a sis on love than sex in the gender structuring of greater need, and find it easier to discuss such the sexual culture (maybe again suggesting that matters. The third rationale that expressed this patients’ purely sexual needs are not so impor- “ageism” was that young women have a much tant), that sex and love need to be seen together greater need for possible breast reconstruction with some nurses asserting that sex without love after mastectomy, and that older women do not is socially unacceptable especially for a woman, want such corrective surgery. The fourth ratio- in more practical terms that being in a loving re- nale concerned sexuality and fecundity, that lationship with its social support is very impor-

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tant for the patients in their recovery and that assumed gender and ageist stereotypes may be the process of the treatment of breast cancer has expected to hinder nurses’ ability to meet such a major impact on relationships going beyond women’s re-assurance and the provision of use- merely sex, affecting the quality and affection in ful guidance pertaining to their future sexual the relationship, both positively and negatively lives. The next aim is to use this information to in different couples. assist in refining the training provided to nurses In conclusion, the study has been able to who work in this area. We assume that nurses’ identify a range of representations of sexuality representations of sexuality have the potential which have a bearing upon the ways nurses in to affect communication with the patient. In this Brazil communicate with patients being treat- sense, these results can contribute to improving ed and recovering from breast cancer. Some of capacity building of health professionals and to those representations such as that based upon a sensitize them to include sexual issues in the care purely bio-medical model, and those shaped by of women with breast cancer.

Resumen Contributors

El desarrollo de nuevos tratamientos mejoró la supervi- E. M. Vieira, L. C. U. Junqueira and A. Giami participated vencia y la calidad de vida de los pacientes con cáncer. in conceiving the study, data analysis and write-up of El estudio analiza las orientaciones que proporcionan the article. M. A. Santos and N. J. Ford contributed with las enfermeras sobre sexualidad a las pacientes, pues- data analysis and article write-up. to que se considera un importante aspecto de la vida. El principal objetivo de este artículo es comprender las concepciones sobre sexualidad entre las enfermeras que Acknowledgments trabajan con mujeres que han superado un cáncer de mama, después del diagnóstico y durante el tratamien- We wish to gratefully acknowledge the financial support to, considerando que estas concepciones pueden afec- of FAPESP. tar la comunicación con el paciente. Este es un estudio cualitativo que entrevistó a 28 enfermeras que viven y trabajan en el sureste de Brasil. Las narraciones fueron sometidas a un análisis de contenido y se identificaron y discutieron las categorías de las concepciones. Se en- contraron varias concepciones sobre sexualidad en los relatos de las enfermeras. Algunas de ellas pueden ocultar su habilidad para transmitir orientaciones relacio- nadas con la vida sexual de estas pacientes.

Neoplasias de la Mama; Sexualidad; Enfermeras

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