Health Care for Women International
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Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer Ragnhild J. T. Sekse, Målfrid Råheim & Eva Gjengedal To cite this article: Ragnhild J. T. Sekse, Målfrid Råheim & Eva Gjengedal (2015) Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer, Health Care for Women International, 36:11, 1255-1269, DOI: 10.1080/07399332.2014.989436 To link to this article: http://dx.doi.org/10.1080/07399332.2014.989436
Accepted author version posted online: 25 Nov 2014. Published online: 03 Feb 2015. Submit your article to this journal
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Health Care for Women International, 36:1255–1269, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0739-9332 print / 1096-4665 online DOI: 10.1080/07399332.2014.989436
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Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer RAGNHILD J. T. SEKSE Department of Obstetrics and Gynaecology, Haukeland University Hospital, Bergen, Norway
˚ ˚ MALFRID RAHEIM Department of Public Health and Primary Health Care, University of Bergen, Bergan, Norway
EVA GJENGEDAL Department of Public Health and Primary Health Care, University of Bergen, Bergen; and Faculty of Health and Social Care, Molde University College, Molde, Norway
In this article we explore shyness and openness related to sexuality and intimacy in long-term female survivors of gynecological cancer, and how these women experienced dialogue with health personnel on these issues. Further analysis on two core themes, based on empirical data presented elsewhere, inspired continued theoretical and philosophical thinking drawing on Løgstrup’s expressions of life and unified opposites. The findings show that gynecological cancer survivors and health personnel share common ground as human beings because shyness and openness are basic human phenomena. Health personnel’s own movement between these phenomena may represent a resource because it can help women to handle sexual and intimacy challenges following gynecological cancer.
BACKGROUND The number of women who become survivors after gynecological cancer is increasing, due to better and more efficient treatment but also because of Received 7 August 2013; accepted 15 November 2014. Address correspondence to Ragnhild J. T. Sekse, Department of Obstetrics and Gynecology, Haukeland University Hospital, Jonas Liesv 72, N-5021 Bergen, Norway. E-mail: [email protected] 1255
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higher cancer incidence and an aging population. This development creates a need for more knowledge about health-related quality of life and side-effects following gynecological cancer. One side-effect that has received attention in recent years is the negative impact on women’s sexuality. Focus has mainly been on anatomical and physical changes in the organs and tissues within the pelvis (AbbottAnderson & Kwekkeboom, 2012; Audette & Waterman, 2010; Lammerink, de Bock, Pras, Reyners, & Mourits, 2012). According to researchers’ results from the studies above, each stage of the sexual response cycle has the potential of being affected by gynecological cancer and its treatment. Even though research reports major physical changes following this type of cancer, however, criticism has recently been voiced regarding the one-sided focus on the physical aspects concerning sexuality. Among others, Cleary and Hegarty (2011) revealed in a review the lack of a holistic perspectives on sexuality in literature. Nevertheless, sexuality is inseparable from a person’s life. It is a multidimensional phenomenon with psychological, social, and existential dimensions, as well as physical (Abbott-Anderson & Kwekkeboom, 2012; Cleary, Hegarty, & McCarthy, 2011; Gilbert, Ussher, & Perz, 2011; Reese, 2011; Reis, Beji, & Coskun, 2010). Women’s sexuality and their psychological well-being may also be negatively affected by, for example, anxiety, depression, psychological distress, and changes in perception of femininity and body image (Abbott-Anderson & Kwekkeboom, 2012; Cleary & Hegarty, 2011; Gilbert et al., 2011). Furthermore, the impact of gynecological cancer and its treatment is not limited to the individual woman but also affects intimacy and sexual relationships (Abbott-Anderson & Kwekkeboom, 2012; Ratner, Foran, Schwartz, & Minkin, 2010). Moreover, for many patients, cancer influences existential dimensions of life and may affect sexual life and well-being (Hodgkinson et al., 2007; Myers et al., 2013; Simard et al., 2013). Given the description above, gynecological cancer and changes in body and sexual life may be difficult to address for both women and health personnel. The patients’ needs for information and guidance are underscored by researchers in several studies (Carter, Stabile, Gunn, & Sonoda, 2013; Krychman & Millheiser, 2013; Lindau, Gavrilova, & Anderson, 2007; Rasmusson, Plantin, & Elmerstig, 2013; Rasmusson & Thom´e, 2008; Reese, 2011; Sekse, Raaheim, Blaaka, & Gjengedal, 2010; Zeng, Liu, & Loke, 2012). Women did wish to speak to health personnel about bodily changes and the impact cancer had on their lives and relationships, but they had hoped that health personnel would initiate such conversations. On the other hand, although health personnel report that sexual issues ought to be an integral part of holistic caregiving, this rarely is the case. In several studies researchers conclude that shyness and lack of communication skills related to intimate issues are causes for shortcomings in holistic care giving (Barton-Burke &
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Gustason, 2007; Hautamaki, Miettinen, Kellokumpu-Lehtinen, Aalto, & Lehto, 2007; Hordern & Street, 2007; Lindau et al., 2007). Taking note that much current research lacks holistic thinking concerning sexuality, we began to reflect theoretically on two core themes within long-term survival of gynecological cancer presented elsewhere (Sekse, Raaheim, Blaaka, & Gjengedal, 2010). The two core themes, living in a changed female body and feeling left alone—not not being given enough information and guidance after treatment, affected the nascent issue and were given a further analysis. Our aim was to delve deeper into how the women described their efforts to find ways of handling sexual changes and intimacy, and into how dialogue with health personnel on such issues took place, seen in light of Danish life philosophy and the concept of unified opposites. The issue raised in this article should be of interest internationally to all health personnel involved with women who have survived gynecological cancer and who are in the process of adjusting to a changed female body.
THEORETICAL FRAMEWORK Expressions of Life and Unified Opposites According to theologian and Danish life philosopher Knud E. Løgstrup (2000), life phenomena or expressions of life are basic phenomena in our lives and relationships. Life phenomena are bearers of our lives, and without them we cannot exist as human beings. These life experiences are so common that we hardly ever think about them. The most basic expressions of life, says Løgstrup (2000), are the very ones we discover last and with greatest difficulty. These expressions are concealed from us in daily life, but they are nevertheless silently present in our relationships. We gain admittance to them by interpreting the concrete situation (Martinsen, 2006). In some situations the phenomena become more prominent and intrusive, as when failures and shortages occur. Thus, we may become aware of how significant life expressions are. Furthermore, Løgstrup (2000) claims that these expressions of life are unified opposites. They are opposed to, as well as conditioned by, each other. Thus, the opposites gain vigor and energy through the tension they create in relation to each other. The unified opposites prevent life from becoming stiffened into simplicity. As such, the unified opposites preserve life phenomena, but they become divided when one phenomenon is driven out by the other. Without unified opposites, life is impoverished (Løgstrup, 2000). One unified opposite Løgstrup speaks of is “the zone of untouchability” in response to “the openness of speech.” The zone of untouchability exists in all living beings and must not be touched because this will threaten a
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person’s integrity (Bugge, B¨owadt, & Aaboe Sørensen, 2005; Løgstrup, 1995). The zone of untouchability protects us from being violated and makes human encounters and dialogue possible. This zone establishes a protective prudence that entails that we should not invade the thoughts and feelings of the other (Bugge et al., 2005). Respecting the other’s zone of untouchability protects life and human relations. If the zone of untouchability remains unchallenged, however, it may stiffen into mere principle and closedness. The zone of untouchability needs an opposite, a phenomenon to which to respond. Løgstrup calls this opposite the openness of speech. The zone of untouchability and the openness of speech are unified opposites that are necessary for our lives and relations. It is this openness that invites us into another person’s zone of untouchability (Martinsen, 2006). Only when the element of strangeness in the encounter is maintained, however, will such openness make space for thoughtfulness and selflessness. Without a respect for this zone of untouchability, such openness of speech might lead to mindless talk, exposure, and invasion. We lose the space and distance to move that the zone of untouchability provides. Remaining in a unified opposite is therefore necessary, both in order to avoid offensiveness and to secure respect and openness in the relationship. Openness makes the zone of untouchability flexible in our encounters with one another, but only when the element of strangeness is maintained (Bugge et al., 2005). Human encounters that repose in thinking about unified opposites give life and resilience to existence. Through these opposites we meet one another without invading one another. Openness, in an exchange with the zone of untouchability, creates space and may leave us in a state of slow wonder (Martinsen, 2006).
THE STUDY The Phenomenological–Hermeneutic Approach The study is anchored in a lifeworld perspective and is founded on a phenomenological–hermeneutic approach. This perspective is, as far as possible, to elucidate essential meanings of the phenomena (Dahlberg, Dahlberg, & Nystr¨om, 2008; Giorgi, 1997; Van Manen, 1997). Uninterpreted phenomena, however, do not exist in the lifeworld. We are immersed in it and, as such, our preunderstanding represents the given basis for all experience, such as encounters with other people, texts, or phenomena (Gadamer, 1999). Consequently, the study is phenomenological because it attempts to allow the issue to speak for itself, and it is hermeneutical because the researcher must have a position from where to observe and gain new insight.
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The Women in the Study In Norway the follow-up visits during the rehabilitation process for women after gynecological cancer are primarily performed by a gynecologist, focusing on cancer recurrence. Sixteen long-term surviving women (>5 years) after gynecological cancer were recruited from an outpatient clinic at a university hospital in Norway. The women received written information about the study by mail, with an invitation to participate in two interviews, done 5 and 6 years, respectively, after treatment. The staff nurses selected participants based on the following criteria: women treated for various types of gynecological cancers 5 years earlier; no recurrence or metastasis after treatment; and aged between 30 and 70. Thirty-two women were invited to participate, and 16 accepted. The women were between 39 and 66 years old (average 56) at the time of recruitment. All lived with a spouse, and most had one or more children and considered themselves finished with childbearing. The women had various diagnoses of gynecological cancer in different stages. All had undergone surgery. Thirteen had removed their uterus and ovaries, two had removed their uterus only, and one had removed her uterus and one ovary. Five women had received additional treatment: cytostaticum in two cases and radiation in three.
Interviews Thirty-two in-depth interviews were performed from December 2005 to October 2007. The first interview took place just before the final control in a 5-year follow-up program and the second approximately 1 year later, when the women had completed the program and were declared healthy, longterm survivors. In the first round, the first author, who conducted all the interviews, encouraged the women to talk as freely as possible concerning their own stories of going through cancer, from the time of diagnosis until the present. An interview guide, with some broad topics (like how the women had experienced changes after treatment and how they had experienced coming to terms with themselves after illness) was developed. In the second round, the guide was more individually adjusted and related to the conversation in the first interview.
Ethical Considerations The study was approved by the Regional Committee for Medical and Health Research Ethics and registered at the Norwegian Social Science Data Service. The women were informed that participation was voluntary and that they could withdraw from the study at any time without explanation. They gave their written, informed consent to participate and permitted the
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conversations to be recorded. Measures were taken to ensure anonymity in the presentation, including alteration of the participants’ names.
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Data Analysis The interviews were recorded on a mini-disc and transcribed verbatim by the first author. The analysis was conducted in collaboration with all the authors. After transcribing the interview, each text was carefully read to gain a general understanding. During the subsequent multiple readings, important words and topics were taken note of in the transcript, and different topics were marked in the text (Giorgi, 1997; Kvale, 1996). A condensed story, with preliminary themes and subthemes, was written down for each woman. When the first round was completed, all the 16 compact stories were read in parallel in search of common themes. The same analysis procedure was followed for the second round of interviews. Three core themes with subthemes emerged and are published elsewhere (Sekse et al., 2010). Furthermore, in two of the themes, living in a changed female body and feeling left alone—not receiving enough information and guidance after treatment, we became aware of the issue of shyness related to sexuality, both from the women’s perspectives and in relation to their dialogue with health personnel. With attention to Danish life philosophy and Løgstrup’s unified opposites, a deeper theoretical understanding of shyness and openness was sought. We reread the condensed stories, focusing on women’s descriptions of handling changes related to sexuality and intimacy. A meaning structure, living between shyness and openness related to sexuality and intimacy, consisting of two core themes, emerged from the process.
FINDINGS: LIVING BETWEEN SHYNESS AND OPENNESS RELATED TO SEXUALITY AND INTIMACY The women’s lived experiences revealed shyness and vulnerability in the handling of the issue of sexuality and intimacy. They found it difficult to express their personal experiences and needs related to this issue in their everyday lives. Even when interacting with health personnel during the 5-year follow-up, loneliness and shyness permeated the women’s lived experiences. The women needed to communicate about this issue, but they had wished that health personnel would initiate the dialogue. Such initiatives were rare. In the findings, women are described as being more or less trapped in shyness or shame and sometimes moving toward openness about sexuality and intimacy. The way interaction between health personnel and the women took place influenced the tension between shyness and openness.
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The Silent Issue of Sexuality in Women’s Lives The women were profoundly alone in the process of handling any changes related to sexuality and intimacy. The issue had hardly been voiced. As such, the interview situation, 5 and 6 years after treatment, represented, to many of the women, the first time they had spoken to someone about their sexual lives and challenges after treatment for gynecological cancer. The women’s stories revealed their shyness and lack of dialogue related to sexuality. This was the case even for several of those who had an intimate relationship with a partner. They had come to a mutual understanding about the sexual changes without explicitly speaking about the problems. Things had been worked out silently. Frida said, “We haven’t talked about it,. . . but we have more or less found our way through it all.” Alice described how she, in solitude after treatment for gynecological cancer, had worked her way through the bodily changes and their consequences for her sexual life: Dry mucous membranes. I had never thought about it in my everyday life, not even after treatment for cancer. . . . No one had told me. . . . I went home [from hospital] and then I began to experience the dryness. . . and all the thoughts rolled over me: “What is this?” I had to speak harshly to myself and, fortunately, I managed to reason my way to why this happened.
Alice had not received any information about bodily changes and any consequences these would have for her sexual life after treatment for gynecological cancer, and she was too shy to address the issue. In the research interviews, she dared to describe the humiliation she felt at not being given essential information about the surgical intervention and the consequences this would have for her life and sexuality. This came in contrast to the good quality of information she had received during her 5 days in the hospital, which was concrete and detailed in preparing her for surgery. She felt the situation had been turned totally upside-down and said the following about the lack of information about bodily changes: “Isn’t it more important to be prepared for the many years ahead?” For Alice and her partner, the treatment for cancer had had major consequences for their sexual relationship. They felt both disappointment and anger at the fact that they had not been informed of such profound changes. Years after surgery, shyness and uncertainty still seemed to be important aspects in the gynecological cancer trajectory. Berit described being alone with existential and intimate thoughts and issues. Several times, she had thought of possible ways to seek help: “Sometimes I have thought about. . . when I go to the pharmacy, there’s a poster that says you can call the cancer phone. . . . But what do you ask about?” Not having someone to confide in regarding shyness and vulnerability seemed to have a life-constraining effect on many women’s processes beyond gynecological cancer.
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The Silent Issue in Encounters With Health Personnel The need for dialogue with committed health care workers from an early stage of the illness and onward was voiced. Dialogue with nurses and other health personnel seemed precarious because cancer experiences related to sexuality were sensitive and rarely communicated. The process of sorting out things such as sexuality and intimacy was described as a lonely journey, despite the fact that the women had routine follow-up meetings with health personnel for 5 years. Nanna was among those who had not received any information or guidance about sexual life and intimacy after cancer. Although she said she had had no active sexual life in the first place, she still felt the need for knowledge and information about bodily changes and their consequences. She felt ignored: “It is my body and my life. At least, I could have been told how it is.” Nanna and almost all the others were disappointed in health personnel who had not informed them about sexual changes. Klara said the information the doctor had given her was limited to advising her to use cooking oil, after she had asked how to treat a sore and dry vagina. She felt humiliated by such an answer and concluded to herself that this was not the person to ask for dialogue about sexual and intimate issues. On one hand, it was out of the question for many of the women to initiate dialogue about sexual issues with health personnel. On the other hand, the women acknowledged in retrospect that they had a strong, but unspoken, need for dialogue about intimate issues and that they wished health personnel had initiated such dialogues. This was also the case for Alice. It was only when a physical problem arose at a gynecological examination that the doctor grazed the issue by commenting that her vagina was very dry and sore. Alice found courage to say that this had been a problem for more than a year. The doctor responded by writing a prescription for a remedy to use in the vagina twice a week. Alice appreciated this, but she felt embarrassed by the way the doctor handled the situation. There was no further talk of the issue. As it turned out, Alice felt that the product was very sticky and uncomfortable to use, but she did not consider discussing this with her doctor: “I did not start nagging about that again. . . . I had been told what to do, and by not following directions it was my own fault.” Alice’s comment reveals her shyness and shame but also the lack of conditions for dialogue and openness. Women felt strongly that dialogue about past experiences and future challenges related to sexuality and intimacy was missing in the interaction with health personnel. They sought genuine involvement and openness from personnel and more time for conversation. They wondered why they had not heard questions like, “How do you feel?” Jorunn had tried to raise the subject because she needed professional help regarding changes in her sexual life. She said, “I needed to talk to someone, to go a bit deeper into things,” but
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she experienced that nurses and other health personnel did not respond to her initiatives and thus there was no dialogue concerning her intimate life challenges during the entire 5-year follow-up. Jorunn said further, “These are touchy topics to bring up, but short answers do not really encourage deep conversations.” After having attempted to voice the issue to no avail, Jorunn asked for advice at a sex shop. The difficulty of establishing dialogue about vulnerable and intimate issues throughout the follow-up was also described by Nanna. She told of being bothered by a foul odor from her vagina and felt great embarrassment and shame over this. Several times she had tried to communicate with health personnel concerning her problem: I felt that there was such a distance between us, the doctor and me. . . . He didn’t really say anything, and then I lost courage and didn’t say anything either. . . or . . . if I did say something. . . he gave me the shortest possible answer. I just couldn’t find the confidence. . . . The distance was too great.
The way many of the women were met by health personnel concerning intimacy led to more shyness and shame and ended in more loneliness related to their sexual and intimate problems. Looking back at the 5-year follow-up, several of the women reflected on how challenges, due to bodily and sexual changes, could have been easier to handle if health personnel had tried to be more open about sensitive topics, as Alice said: If someone (health personnel) had been open and prepared me for the changes, I would have known what was coming. Instead, I was unprepared when the changes came and wondered, “What is this?” That’s a big difference, to be prepared to deal with it.
DISCUSSION The findings show that the basic phenomena in life, “the zone of untouchability” and “the openness of speech,” which are understood as shyness and openness, became both prominent and intrusive in the women’s lives in relation to sexuality. When failures and shortages occur, the phenomena come to the foreground and become prominent (Martinsen, 2006). The women in this study illuminate the significance of the opposites of the untouchable zone and open speech concerning sexuality and intimacy. The women’s stories were permeated by shyness. When bashfulness or shyness, is offended, it reacts with shame (Løgstrup, 1995). As such, bashfulness protects from shame. The empiri-
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cal data show that there were fine boundaries between shyness and shame in the women’s lives. Their lived experiences revealed that shyness could easily turn into shame, and the women’s stories revealed many situations in which shame was present. In some ways, it seemed as if the women were balancing on the edge of shyness, trying not to fall into shame. They also seemed to be occasionally locked, either within their shyness or their shame. According to Løgstrup (2000), this is when the opposites, the untouchable zone and openness of speech, have driven each other out, so to speak. Hence, life becomes impoverished without the unified opposites, as the empirical data indicate. The women in this study seemed hurt and violated by the lack of information about profound changes in their own bodies with consequences for their sexual life and intimacy. The women needed to be met with openness in their shyness, and they were dependent on someone who could do so. The lack of communication about bodily changes and, more specifically, about sexual and intimate issues has been raised by researchers in several studies (Carter et al., 2013; Hautamaki et al., 2007; Hordern & Street, 2007; Lindau et al., 2007; Rasmusson & Thom´e, 2008; Sekse et al., 2010). Among others, Lindau and colleagues (2007) found in their study that 62% of longterm survivors after gynecological cancer reported that the physician never had discussed the implications genital tract cancer had on sexuality. The women’s satisfaction with care related to sexuality was significantly lower than their satisfaction with cancer care in general. The findings in our study, and some studies above, show that women wished to speak to health personnel about their changed female bodies and the impact cancer would have on their sexual lives and relationships. Most of the women wanted health personnel, however, to take initiative to such conversations, to actively address the issue and to be good listeners in the dialogue. Lindau and colleagues (2007) show that women who had the opportunity to have dialogue with health personnel about sexual changes following gynecological cancer improved their sexual adjustment significantly. This is echoed by Hersch and colleagues (2009), who concluded in a review that dialogue and counseling appear to be the most promising intervention strategies for sexual functioning. The women’s efforts to open up to the issue of sexuality show that they were moving toward openness. Without openness, Løgstrup (1995) says, the zone of untouchability closes, but through opposites we meet each other without invading each other. Although some women in the study were moving toward openness, they depended on the other person’s openness to find help. The untouchable zone and the openness of speech applied to both parties. The women’s lived experiences revealed that others, including health personnel, did not stick to the issue and did not meet them in openness, as is supported by several other researchers (Barton-Burke & Gustason, 2007; Hordern, 2008; Hordern & Street, 2007; Lindau et al., 2007; Rasmusson et al.,
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2013). Thus, the women felt even more shyness, and for some this appeared to turn into shame. The women’s quest for openness concerning intimacy depended on someone who could meet them in their openness. In the findings it is revealed that the health personnel rarely initiated dialogue with the women about sexuality. The lack of dialogue and guidance seemed to reinforce the women’s shyness. In several studies researchers conclude that there is a lack of communication and clearly a need for more information, guidance, and dialogue with health personnel regarding sexuality (Hautamaki et al., 2007; Hordern & Street, 2007; Krychman & Millheiser, 2013; Lindau et al., 2007; Reese, 2011; Stead, Brown, Fallowfield, & Selby, 2003; Wiggins, Wood, Granai, & Dizon, 2007). Furthermore, although health care workers themselves state that addressing sexual issues should be a part of holistic treatment, this is seldom the case. Shyness and lack of knowledge and communicative experience were important reasons among health personnel for not addressing the issue (Barton-Burke & Gustason, 2007; Hautamaki et al., 2007; Wiggins et al., 2007). This points to shyness as a basic human phenomenon, existing in the women’s lives as well as in the lives of nurses and other health care personnel. Although health personnel did not initiate dialogue with the women, our study shows that they, in some cases, responded to a woman’s intimate question with very brief pieces of advice, without any invitation to continued dialogue. We suggest that health personnel, by objectifying sexual and intimate issues, somehow tried to protect both the women and themselves due to shyness and shame. It seemed, however, as if health personnel lost sight of the woman in the relationship when handling the issue. In particularly vulnerable situations, the triangle relationship among patient, professional, and the issue at hand could be helpful to keep in focus (Martinsen, 2006; Skjervheim, 1996). The researchers found that women who were beyond gynecological cancer did actually call for openness and dialogue with professionals, but they were seldom met “in the proper depth of the issue” concerning intimate and sexual issues. There was some dialogue about the common issue, but the women did not experience being met as the issue was reduced to a physical problem, for example, that needed to be solved. Martinsen (2006) says that we cannot converse with another person without finding ourselves in a movement between the zone of untouchability and openness. If we get stuck, it is because we have put ourselves in the center, and we cannot have real dialogue if we become self-protective. We become self-centered and do not move in the tension between openness and untouchability. It is reasonable to ask whether health personnel easily may be locked into their own shyness over intimate issues. Barton-Burke and Gustason (2007) conclude in a review that it is necessary to educate nurses in order to change practice on communication about topics that make both the patient and the nurse uncomfortable. Shyness does not disappear from the relationship. It will remain a basic human
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phenomenon, both for the women and for nurses as well as other health personnel. The challenge is to maintain the movement between shyness and openness in the encounter with the women and to use it as a resource in handling sexual issues. In the encounter with health personnel, intimacy and sexuality were issues shrouded in silence. Health professionals were able to deal with such issues in certain problem-solving ways, but the women’s need for profound dialogue about sexual and intimate life was far more difficult to handle. Thus, the women were more or less left to themselves with their changed bodies and sexuality.
STRENGTHS AND LIMITATIONS All the women participating in this study were from the same ethnic group and had similar cultural backgrounds, something that might make it difficult to transfer findings to women of other cultures. A wider variety of experiences from long-term survivors of gynecological cancer could have been included if participants from other ethnic groups, cultural backgrounds, and treatment institutions had been recruited. The experience of living in a changed female body related to sexuality and intimacy and the impediment of dialogue with health personnel, however, involves several fundamental aspects with relevance to a wider range of cancer patients and to health personnel involved. Furthermore, although the findings in this article may have some limitations because they are rooted in Western cultural views on sexuality, we argue that the theoretical perspective of Danish life philosophy, expressions of life and unified opposites, are relevant to several diseases where illness has changed the body in profound and intimate ways. “The zone of untouchability” and “the openness of speech” are phenomena that belong to life; however, the phenomena need to be understood in a cultural context. Nevertheless, within every culture there will be situations that challenge the zone of untouchability. Raising consciousness about these fundamental phenomena could be useful to health personnel for understanding patients with sexual and intimate challenges in the course of treatment and follow-up.
CONCLUSIONS AND IMPLICATIONS Gynecological cancer had led to profound bodily changes in the women’s lives, with consequences for their sexual life and intimacy. Although the women had great need for information and understanding of their own changed bodies, the prominent and intrusive issue was more or less left in silence.
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If the women’s movement between untouchability and openness is to come to the foreground, nurses and other health personnel must not remain in their own shyness, but rather they must remain in motion between the unified opposites, between shyness and openness, and thereby ensure that the women are cared for in a holistic way. The women may then be able to move between shyness and openness in their own lives, and be capable of handling sexual and intimate problems and challenges in the aftermath of gynecological cancer. The researchers of this study as well as other studies show that people with a history of cancer desire a holistic approach from health personnel. Trained nurses, as well as other health professionals (e.g., psychologists and sexologists), could offer alternative follow-up sessions in which the women’s quality of life and their needs are at the center of the dialogue.
ACKNOWLEDGMENTS We thank the participating women who willingly shared their life experiences with gynecological cancer.
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ISSN: 0739-9332 (Print) 1096-4665 (Online) Journal homepage: http://www.tandfonline.com/loi/uhcw20
Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer Ragnhild J. T. Sekse, Målfrid Råheim & Eva Gjengedal To cite this article: Ragnhild J. T. Sekse, Målfrid Råheim & Eva Gjengedal (2015) Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer, Health Care for Women International, 36:11, 1255-1269, DOI: 10.1080/07399332.2014.989436 To link to this article: http://dx.doi.org/10.1080/07399332.2014.989436
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Shyness and Openness—Common Ground for Dialogue Between Health Personnel and Women About Sexual and Intimate Issues After Gynecological Cancer RAGNHILD J. T. SEKSE Department of Obstetrics and Gynaecology, Haukeland University Hospital, Bergen, Norway
˚ ˚ MALFRID RAHEIM Department of Public Health and Primary Health Care, University of Bergen, Bergan, Norway
EVA GJENGEDAL Department of Public Health and Primary Health Care, University of Bergen, Bergen; and Faculty of Health and Social Care, Molde University College, Molde, Norway
In this article we explore shyness and openness related to sexuality and intimacy in long-term female survivors of gynecological cancer, and how these women experienced dialogue with health personnel on these issues. Further analysis on two core themes, based on empirical data presented elsewhere, inspired continued theoretical and philosophical thinking drawing on Løgstrup’s expressions of life and unified opposites. The findings show that gynecological cancer survivors and health personnel share common ground as human beings because shyness and openness are basic human phenomena. Health personnel’s own movement between these phenomena may represent a resource because it can help women to handle sexual and intimacy challenges following gynecological cancer.
BACKGROUND The number of women who become survivors after gynecological cancer is increasing, due to better and more efficient treatment but also because of Received 7 August 2013; accepted 15 November 2014. Address correspondence to Ragnhild J. T. Sekse, Department of Obstetrics and Gynecology, Haukeland University Hospital, Jonas Liesv 72, N-5021 Bergen, Norway. E-mail: [email protected] 1255
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higher cancer incidence and an aging population. This development creates a need for more knowledge about health-related quality of life and side-effects following gynecological cancer. One side-effect that has received attention in recent years is the negative impact on women’s sexuality. Focus has mainly been on anatomical and physical changes in the organs and tissues within the pelvis (AbbottAnderson & Kwekkeboom, 2012; Audette & Waterman, 2010; Lammerink, de Bock, Pras, Reyners, & Mourits, 2012). According to researchers’ results from the studies above, each stage of the sexual response cycle has the potential of being affected by gynecological cancer and its treatment. Even though research reports major physical changes following this type of cancer, however, criticism has recently been voiced regarding the one-sided focus on the physical aspects concerning sexuality. Among others, Cleary and Hegarty (2011) revealed in a review the lack of a holistic perspectives on sexuality in literature. Nevertheless, sexuality is inseparable from a person’s life. It is a multidimensional phenomenon with psychological, social, and existential dimensions, as well as physical (Abbott-Anderson & Kwekkeboom, 2012; Cleary, Hegarty, & McCarthy, 2011; Gilbert, Ussher, & Perz, 2011; Reese, 2011; Reis, Beji, & Coskun, 2010). Women’s sexuality and their psychological well-being may also be negatively affected by, for example, anxiety, depression, psychological distress, and changes in perception of femininity and body image (Abbott-Anderson & Kwekkeboom, 2012; Cleary & Hegarty, 2011; Gilbert et al., 2011). Furthermore, the impact of gynecological cancer and its treatment is not limited to the individual woman but also affects intimacy and sexual relationships (Abbott-Anderson & Kwekkeboom, 2012; Ratner, Foran, Schwartz, & Minkin, 2010). Moreover, for many patients, cancer influences existential dimensions of life and may affect sexual life and well-being (Hodgkinson et al., 2007; Myers et al., 2013; Simard et al., 2013). Given the description above, gynecological cancer and changes in body and sexual life may be difficult to address for both women and health personnel. The patients’ needs for information and guidance are underscored by researchers in several studies (Carter, Stabile, Gunn, & Sonoda, 2013; Krychman & Millheiser, 2013; Lindau, Gavrilova, & Anderson, 2007; Rasmusson, Plantin, & Elmerstig, 2013; Rasmusson & Thom´e, 2008; Reese, 2011; Sekse, Raaheim, Blaaka, & Gjengedal, 2010; Zeng, Liu, & Loke, 2012). Women did wish to speak to health personnel about bodily changes and the impact cancer had on their lives and relationships, but they had hoped that health personnel would initiate such conversations. On the other hand, although health personnel report that sexual issues ought to be an integral part of holistic caregiving, this rarely is the case. In several studies researchers conclude that shyness and lack of communication skills related to intimate issues are causes for shortcomings in holistic care giving (Barton-Burke &
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Gustason, 2007; Hautamaki, Miettinen, Kellokumpu-Lehtinen, Aalto, & Lehto, 2007; Hordern & Street, 2007; Lindau et al., 2007). Taking note that much current research lacks holistic thinking concerning sexuality, we began to reflect theoretically on two core themes within long-term survival of gynecological cancer presented elsewhere (Sekse, Raaheim, Blaaka, & Gjengedal, 2010). The two core themes, living in a changed female body and feeling left alone—not not being given enough information and guidance after treatment, affected the nascent issue and were given a further analysis. Our aim was to delve deeper into how the women described their efforts to find ways of handling sexual changes and intimacy, and into how dialogue with health personnel on such issues took place, seen in light of Danish life philosophy and the concept of unified opposites. The issue raised in this article should be of interest internationally to all health personnel involved with women who have survived gynecological cancer and who are in the process of adjusting to a changed female body.
THEORETICAL FRAMEWORK Expressions of Life and Unified Opposites According to theologian and Danish life philosopher Knud E. Løgstrup (2000), life phenomena or expressions of life are basic phenomena in our lives and relationships. Life phenomena are bearers of our lives, and without them we cannot exist as human beings. These life experiences are so common that we hardly ever think about them. The most basic expressions of life, says Løgstrup (2000), are the very ones we discover last and with greatest difficulty. These expressions are concealed from us in daily life, but they are nevertheless silently present in our relationships. We gain admittance to them by interpreting the concrete situation (Martinsen, 2006). In some situations the phenomena become more prominent and intrusive, as when failures and shortages occur. Thus, we may become aware of how significant life expressions are. Furthermore, Løgstrup (2000) claims that these expressions of life are unified opposites. They are opposed to, as well as conditioned by, each other. Thus, the opposites gain vigor and energy through the tension they create in relation to each other. The unified opposites prevent life from becoming stiffened into simplicity. As such, the unified opposites preserve life phenomena, but they become divided when one phenomenon is driven out by the other. Without unified opposites, life is impoverished (Løgstrup, 2000). One unified opposite Løgstrup speaks of is “the zone of untouchability” in response to “the openness of speech.” The zone of untouchability exists in all living beings and must not be touched because this will threaten a
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person’s integrity (Bugge, B¨owadt, & Aaboe Sørensen, 2005; Løgstrup, 1995). The zone of untouchability protects us from being violated and makes human encounters and dialogue possible. This zone establishes a protective prudence that entails that we should not invade the thoughts and feelings of the other (Bugge et al., 2005). Respecting the other’s zone of untouchability protects life and human relations. If the zone of untouchability remains unchallenged, however, it may stiffen into mere principle and closedness. The zone of untouchability needs an opposite, a phenomenon to which to respond. Løgstrup calls this opposite the openness of speech. The zone of untouchability and the openness of speech are unified opposites that are necessary for our lives and relations. It is this openness that invites us into another person’s zone of untouchability (Martinsen, 2006). Only when the element of strangeness in the encounter is maintained, however, will such openness make space for thoughtfulness and selflessness. Without a respect for this zone of untouchability, such openness of speech might lead to mindless talk, exposure, and invasion. We lose the space and distance to move that the zone of untouchability provides. Remaining in a unified opposite is therefore necessary, both in order to avoid offensiveness and to secure respect and openness in the relationship. Openness makes the zone of untouchability flexible in our encounters with one another, but only when the element of strangeness is maintained (Bugge et al., 2005). Human encounters that repose in thinking about unified opposites give life and resilience to existence. Through these opposites we meet one another without invading one another. Openness, in an exchange with the zone of untouchability, creates space and may leave us in a state of slow wonder (Martinsen, 2006).
THE STUDY The Phenomenological–Hermeneutic Approach The study is anchored in a lifeworld perspective and is founded on a phenomenological–hermeneutic approach. This perspective is, as far as possible, to elucidate essential meanings of the phenomena (Dahlberg, Dahlberg, & Nystr¨om, 2008; Giorgi, 1997; Van Manen, 1997). Uninterpreted phenomena, however, do not exist in the lifeworld. We are immersed in it and, as such, our preunderstanding represents the given basis for all experience, such as encounters with other people, texts, or phenomena (Gadamer, 1999). Consequently, the study is phenomenological because it attempts to allow the issue to speak for itself, and it is hermeneutical because the researcher must have a position from where to observe and gain new insight.
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The Women in the Study In Norway the follow-up visits during the rehabilitation process for women after gynecological cancer are primarily performed by a gynecologist, focusing on cancer recurrence. Sixteen long-term surviving women (>5 years) after gynecological cancer were recruited from an outpatient clinic at a university hospital in Norway. The women received written information about the study by mail, with an invitation to participate in two interviews, done 5 and 6 years, respectively, after treatment. The staff nurses selected participants based on the following criteria: women treated for various types of gynecological cancers 5 years earlier; no recurrence or metastasis after treatment; and aged between 30 and 70. Thirty-two women were invited to participate, and 16 accepted. The women were between 39 and 66 years old (average 56) at the time of recruitment. All lived with a spouse, and most had one or more children and considered themselves finished with childbearing. The women had various diagnoses of gynecological cancer in different stages. All had undergone surgery. Thirteen had removed their uterus and ovaries, two had removed their uterus only, and one had removed her uterus and one ovary. Five women had received additional treatment: cytostaticum in two cases and radiation in three.
Interviews Thirty-two in-depth interviews were performed from December 2005 to October 2007. The first interview took place just before the final control in a 5-year follow-up program and the second approximately 1 year later, when the women had completed the program and were declared healthy, longterm survivors. In the first round, the first author, who conducted all the interviews, encouraged the women to talk as freely as possible concerning their own stories of going through cancer, from the time of diagnosis until the present. An interview guide, with some broad topics (like how the women had experienced changes after treatment and how they had experienced coming to terms with themselves after illness) was developed. In the second round, the guide was more individually adjusted and related to the conversation in the first interview.
Ethical Considerations The study was approved by the Regional Committee for Medical and Health Research Ethics and registered at the Norwegian Social Science Data Service. The women were informed that participation was voluntary and that they could withdraw from the study at any time without explanation. They gave their written, informed consent to participate and permitted the
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conversations to be recorded. Measures were taken to ensure anonymity in the presentation, including alteration of the participants’ names.
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Data Analysis The interviews were recorded on a mini-disc and transcribed verbatim by the first author. The analysis was conducted in collaboration with all the authors. After transcribing the interview, each text was carefully read to gain a general understanding. During the subsequent multiple readings, important words and topics were taken note of in the transcript, and different topics were marked in the text (Giorgi, 1997; Kvale, 1996). A condensed story, with preliminary themes and subthemes, was written down for each woman. When the first round was completed, all the 16 compact stories were read in parallel in search of common themes. The same analysis procedure was followed for the second round of interviews. Three core themes with subthemes emerged and are published elsewhere (Sekse et al., 2010). Furthermore, in two of the themes, living in a changed female body and feeling left alone—not receiving enough information and guidance after treatment, we became aware of the issue of shyness related to sexuality, both from the women’s perspectives and in relation to their dialogue with health personnel. With attention to Danish life philosophy and Løgstrup’s unified opposites, a deeper theoretical understanding of shyness and openness was sought. We reread the condensed stories, focusing on women’s descriptions of handling changes related to sexuality and intimacy. A meaning structure, living between shyness and openness related to sexuality and intimacy, consisting of two core themes, emerged from the process.
FINDINGS: LIVING BETWEEN SHYNESS AND OPENNESS RELATED TO SEXUALITY AND INTIMACY The women’s lived experiences revealed shyness and vulnerability in the handling of the issue of sexuality and intimacy. They found it difficult to express their personal experiences and needs related to this issue in their everyday lives. Even when interacting with health personnel during the 5-year follow-up, loneliness and shyness permeated the women’s lived experiences. The women needed to communicate about this issue, but they had wished that health personnel would initiate the dialogue. Such initiatives were rare. In the findings, women are described as being more or less trapped in shyness or shame and sometimes moving toward openness about sexuality and intimacy. The way interaction between health personnel and the women took place influenced the tension between shyness and openness.
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The Silent Issue of Sexuality in Women’s Lives The women were profoundly alone in the process of handling any changes related to sexuality and intimacy. The issue had hardly been voiced. As such, the interview situation, 5 and 6 years after treatment, represented, to many of the women, the first time they had spoken to someone about their sexual lives and challenges after treatment for gynecological cancer. The women’s stories revealed their shyness and lack of dialogue related to sexuality. This was the case even for several of those who had an intimate relationship with a partner. They had come to a mutual understanding about the sexual changes without explicitly speaking about the problems. Things had been worked out silently. Frida said, “We haven’t talked about it,. . . but we have more or less found our way through it all.” Alice described how she, in solitude after treatment for gynecological cancer, had worked her way through the bodily changes and their consequences for her sexual life: Dry mucous membranes. I had never thought about it in my everyday life, not even after treatment for cancer. . . . No one had told me. . . . I went home [from hospital] and then I began to experience the dryness. . . and all the thoughts rolled over me: “What is this?” I had to speak harshly to myself and, fortunately, I managed to reason my way to why this happened.
Alice had not received any information about bodily changes and any consequences these would have for her sexual life after treatment for gynecological cancer, and she was too shy to address the issue. In the research interviews, she dared to describe the humiliation she felt at not being given essential information about the surgical intervention and the consequences this would have for her life and sexuality. This came in contrast to the good quality of information she had received during her 5 days in the hospital, which was concrete and detailed in preparing her for surgery. She felt the situation had been turned totally upside-down and said the following about the lack of information about bodily changes: “Isn’t it more important to be prepared for the many years ahead?” For Alice and her partner, the treatment for cancer had had major consequences for their sexual relationship. They felt both disappointment and anger at the fact that they had not been informed of such profound changes. Years after surgery, shyness and uncertainty still seemed to be important aspects in the gynecological cancer trajectory. Berit described being alone with existential and intimate thoughts and issues. Several times, she had thought of possible ways to seek help: “Sometimes I have thought about. . . when I go to the pharmacy, there’s a poster that says you can call the cancer phone. . . . But what do you ask about?” Not having someone to confide in regarding shyness and vulnerability seemed to have a life-constraining effect on many women’s processes beyond gynecological cancer.
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The Silent Issue in Encounters With Health Personnel The need for dialogue with committed health care workers from an early stage of the illness and onward was voiced. Dialogue with nurses and other health personnel seemed precarious because cancer experiences related to sexuality were sensitive and rarely communicated. The process of sorting out things such as sexuality and intimacy was described as a lonely journey, despite the fact that the women had routine follow-up meetings with health personnel for 5 years. Nanna was among those who had not received any information or guidance about sexual life and intimacy after cancer. Although she said she had had no active sexual life in the first place, she still felt the need for knowledge and information about bodily changes and their consequences. She felt ignored: “It is my body and my life. At least, I could have been told how it is.” Nanna and almost all the others were disappointed in health personnel who had not informed them about sexual changes. Klara said the information the doctor had given her was limited to advising her to use cooking oil, after she had asked how to treat a sore and dry vagina. She felt humiliated by such an answer and concluded to herself that this was not the person to ask for dialogue about sexual and intimate issues. On one hand, it was out of the question for many of the women to initiate dialogue about sexual issues with health personnel. On the other hand, the women acknowledged in retrospect that they had a strong, but unspoken, need for dialogue about intimate issues and that they wished health personnel had initiated such dialogues. This was also the case for Alice. It was only when a physical problem arose at a gynecological examination that the doctor grazed the issue by commenting that her vagina was very dry and sore. Alice found courage to say that this had been a problem for more than a year. The doctor responded by writing a prescription for a remedy to use in the vagina twice a week. Alice appreciated this, but she felt embarrassed by the way the doctor handled the situation. There was no further talk of the issue. As it turned out, Alice felt that the product was very sticky and uncomfortable to use, but she did not consider discussing this with her doctor: “I did not start nagging about that again. . . . I had been told what to do, and by not following directions it was my own fault.” Alice’s comment reveals her shyness and shame but also the lack of conditions for dialogue and openness. Women felt strongly that dialogue about past experiences and future challenges related to sexuality and intimacy was missing in the interaction with health personnel. They sought genuine involvement and openness from personnel and more time for conversation. They wondered why they had not heard questions like, “How do you feel?” Jorunn had tried to raise the subject because she needed professional help regarding changes in her sexual life. She said, “I needed to talk to someone, to go a bit deeper into things,” but
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she experienced that nurses and other health personnel did not respond to her initiatives and thus there was no dialogue concerning her intimate life challenges during the entire 5-year follow-up. Jorunn said further, “These are touchy topics to bring up, but short answers do not really encourage deep conversations.” After having attempted to voice the issue to no avail, Jorunn asked for advice at a sex shop. The difficulty of establishing dialogue about vulnerable and intimate issues throughout the follow-up was also described by Nanna. She told of being bothered by a foul odor from her vagina and felt great embarrassment and shame over this. Several times she had tried to communicate with health personnel concerning her problem: I felt that there was such a distance between us, the doctor and me. . . . He didn’t really say anything, and then I lost courage and didn’t say anything either. . . or . . . if I did say something. . . he gave me the shortest possible answer. I just couldn’t find the confidence. . . . The distance was too great.
The way many of the women were met by health personnel concerning intimacy led to more shyness and shame and ended in more loneliness related to their sexual and intimate problems. Looking back at the 5-year follow-up, several of the women reflected on how challenges, due to bodily and sexual changes, could have been easier to handle if health personnel had tried to be more open about sensitive topics, as Alice said: If someone (health personnel) had been open and prepared me for the changes, I would have known what was coming. Instead, I was unprepared when the changes came and wondered, “What is this?” That’s a big difference, to be prepared to deal with it.
DISCUSSION The findings show that the basic phenomena in life, “the zone of untouchability” and “the openness of speech,” which are understood as shyness and openness, became both prominent and intrusive in the women’s lives in relation to sexuality. When failures and shortages occur, the phenomena come to the foreground and become prominent (Martinsen, 2006). The women in this study illuminate the significance of the opposites of the untouchable zone and open speech concerning sexuality and intimacy. The women’s stories were permeated by shyness. When bashfulness or shyness, is offended, it reacts with shame (Løgstrup, 1995). As such, bashfulness protects from shame. The empiri-
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cal data show that there were fine boundaries between shyness and shame in the women’s lives. Their lived experiences revealed that shyness could easily turn into shame, and the women’s stories revealed many situations in which shame was present. In some ways, it seemed as if the women were balancing on the edge of shyness, trying not to fall into shame. They also seemed to be occasionally locked, either within their shyness or their shame. According to Løgstrup (2000), this is when the opposites, the untouchable zone and openness of speech, have driven each other out, so to speak. Hence, life becomes impoverished without the unified opposites, as the empirical data indicate. The women in this study seemed hurt and violated by the lack of information about profound changes in their own bodies with consequences for their sexual life and intimacy. The women needed to be met with openness in their shyness, and they were dependent on someone who could do so. The lack of communication about bodily changes and, more specifically, about sexual and intimate issues has been raised by researchers in several studies (Carter et al., 2013; Hautamaki et al., 2007; Hordern & Street, 2007; Lindau et al., 2007; Rasmusson & Thom´e, 2008; Sekse et al., 2010). Among others, Lindau and colleagues (2007) found in their study that 62% of longterm survivors after gynecological cancer reported that the physician never had discussed the implications genital tract cancer had on sexuality. The women’s satisfaction with care related to sexuality was significantly lower than their satisfaction with cancer care in general. The findings in our study, and some studies above, show that women wished to speak to health personnel about their changed female bodies and the impact cancer would have on their sexual lives and relationships. Most of the women wanted health personnel, however, to take initiative to such conversations, to actively address the issue and to be good listeners in the dialogue. Lindau and colleagues (2007) show that women who had the opportunity to have dialogue with health personnel about sexual changes following gynecological cancer improved their sexual adjustment significantly. This is echoed by Hersch and colleagues (2009), who concluded in a review that dialogue and counseling appear to be the most promising intervention strategies for sexual functioning. The women’s efforts to open up to the issue of sexuality show that they were moving toward openness. Without openness, Løgstrup (1995) says, the zone of untouchability closes, but through opposites we meet each other without invading each other. Although some women in the study were moving toward openness, they depended on the other person’s openness to find help. The untouchable zone and the openness of speech applied to both parties. The women’s lived experiences revealed that others, including health personnel, did not stick to the issue and did not meet them in openness, as is supported by several other researchers (Barton-Burke & Gustason, 2007; Hordern, 2008; Hordern & Street, 2007; Lindau et al., 2007; Rasmusson et al.,
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2013). Thus, the women felt even more shyness, and for some this appeared to turn into shame. The women’s quest for openness concerning intimacy depended on someone who could meet them in their openness. In the findings it is revealed that the health personnel rarely initiated dialogue with the women about sexuality. The lack of dialogue and guidance seemed to reinforce the women’s shyness. In several studies researchers conclude that there is a lack of communication and clearly a need for more information, guidance, and dialogue with health personnel regarding sexuality (Hautamaki et al., 2007; Hordern & Street, 2007; Krychman & Millheiser, 2013; Lindau et al., 2007; Reese, 2011; Stead, Brown, Fallowfield, & Selby, 2003; Wiggins, Wood, Granai, & Dizon, 2007). Furthermore, although health care workers themselves state that addressing sexual issues should be a part of holistic treatment, this is seldom the case. Shyness and lack of knowledge and communicative experience were important reasons among health personnel for not addressing the issue (Barton-Burke & Gustason, 2007; Hautamaki et al., 2007; Wiggins et al., 2007). This points to shyness as a basic human phenomenon, existing in the women’s lives as well as in the lives of nurses and other health care personnel. Although health personnel did not initiate dialogue with the women, our study shows that they, in some cases, responded to a woman’s intimate question with very brief pieces of advice, without any invitation to continued dialogue. We suggest that health personnel, by objectifying sexual and intimate issues, somehow tried to protect both the women and themselves due to shyness and shame. It seemed, however, as if health personnel lost sight of the woman in the relationship when handling the issue. In particularly vulnerable situations, the triangle relationship among patient, professional, and the issue at hand could be helpful to keep in focus (Martinsen, 2006; Skjervheim, 1996). The researchers found that women who were beyond gynecological cancer did actually call for openness and dialogue with professionals, but they were seldom met “in the proper depth of the issue” concerning intimate and sexual issues. There was some dialogue about the common issue, but the women did not experience being met as the issue was reduced to a physical problem, for example, that needed to be solved. Martinsen (2006) says that we cannot converse with another person without finding ourselves in a movement between the zone of untouchability and openness. If we get stuck, it is because we have put ourselves in the center, and we cannot have real dialogue if we become self-protective. We become self-centered and do not move in the tension between openness and untouchability. It is reasonable to ask whether health personnel easily may be locked into their own shyness over intimate issues. Barton-Burke and Gustason (2007) conclude in a review that it is necessary to educate nurses in order to change practice on communication about topics that make both the patient and the nurse uncomfortable. Shyness does not disappear from the relationship. It will remain a basic human
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phenomenon, both for the women and for nurses as well as other health personnel. The challenge is to maintain the movement between shyness and openness in the encounter with the women and to use it as a resource in handling sexual issues. In the encounter with health personnel, intimacy and sexuality were issues shrouded in silence. Health professionals were able to deal with such issues in certain problem-solving ways, but the women’s need for profound dialogue about sexual and intimate life was far more difficult to handle. Thus, the women were more or less left to themselves with their changed bodies and sexuality.
STRENGTHS AND LIMITATIONS All the women participating in this study were from the same ethnic group and had similar cultural backgrounds, something that might make it difficult to transfer findings to women of other cultures. A wider variety of experiences from long-term survivors of gynecological cancer could have been included if participants from other ethnic groups, cultural backgrounds, and treatment institutions had been recruited. The experience of living in a changed female body related to sexuality and intimacy and the impediment of dialogue with health personnel, however, involves several fundamental aspects with relevance to a wider range of cancer patients and to health personnel involved. Furthermore, although the findings in this article may have some limitations because they are rooted in Western cultural views on sexuality, we argue that the theoretical perspective of Danish life philosophy, expressions of life and unified opposites, are relevant to several diseases where illness has changed the body in profound and intimate ways. “The zone of untouchability” and “the openness of speech” are phenomena that belong to life; however, the phenomena need to be understood in a cultural context. Nevertheless, within every culture there will be situations that challenge the zone of untouchability. Raising consciousness about these fundamental phenomena could be useful to health personnel for understanding patients with sexual and intimate challenges in the course of treatment and follow-up.
CONCLUSIONS AND IMPLICATIONS Gynecological cancer had led to profound bodily changes in the women’s lives, with consequences for their sexual life and intimacy. Although the women had great need for information and understanding of their own changed bodies, the prominent and intrusive issue was more or less left in silence.
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If the women’s movement between untouchability and openness is to come to the foreground, nurses and other health personnel must not remain in their own shyness, but rather they must remain in motion between the unified opposites, between shyness and openness, and thereby ensure that the women are cared for in a holistic way. The women may then be able to move between shyness and openness in their own lives, and be capable of handling sexual and intimate problems and challenges in the aftermath of gynecological cancer. The researchers of this study as well as other studies show that people with a history of cancer desire a holistic approach from health personnel. Trained nurses, as well as other health professionals (e.g., psychologists and sexologists), could offer alternative follow-up sessions in which the women’s quality of life and their needs are at the center of the dialogue.
ACKNOWLEDGMENTS We thank the participating women who willingly shared their life experiences with gynecological cancer.
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