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Journal of Clinical Oncology, Vol 23, No 1 (January 1), 2005: pp. 238-241 © 2005 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.05.101
The Sounds of Silence: Sexuality Information for Cancer PatientsFrom the Faculty of Nursing, University of Manitoba, Winnipeg, Canada Address reprint requests to Anne Katz, RN, PhD, Faculty of Nursing, University of Manitoba, 491 Helen Glass Center for Nursing, Faculty of Nursing, University of Manitoba, Winnipeg, MB R3T 2N2 Canada; e-mail: Anne_Katz{at}Umanitoba.ca HERE’S THE CASE Mary, a 41-year-old woman with endometrial cancer, had a hysterectomy for endometrial cancer and subsequently completed radiation therapy. Having recovered from the operation and radiation, she is doing well physically. Nonetheless, she reports that she had pain on intercourse 3 weeks before and has been too afraid to try again since then. She has been married for 10 years, and sex has always been very important to her and her husband. She becomes very emotional when talking about this and states that she is afraid that if this does not improve, her husband may leave her. She states that she has not been given information about sexual functioning at any point in her treatment and believes that this is bordering on malpractice. CANCER AND SEXUALITY The diagnosis of cancer of any kind has a devastating effect on psychological and emotional well-being. Issues of mortality may be all consuming in the early stages after diagnosis; however, with time, most people with cancer do manage to return to dealing with normal life issues. One of these is sexual functioning. Cancer diagnosis and treatments may have significant impact on sexual activity, from functional, to emotional and mental effects. Cancer and the effects of treatments can cause symptoms that alter sexual functioning even though the cancer itself may not have a direct effect on a sexual organ. Fatigue, pain, and restriction of movement are common. Discharge from wounds, as well as pain and disfigurement associated with surgery and radiation treatments can affect a person’s ability to perceive themselves as sexual beings.1 Disfiguring scars or the changed appearance of the person with cancer may interfere with their partner’s ability or willingness to find them sexually attractive. Weight loss is a common side effect of both cancer and the treatments offered, and some patients may feel undesirable and depressed. The presence of edema can make others feel fat and unattractive and may make the physical act itself difficult or uncomfortable.2 Psychological distress can have a profound indirect effect on all aspects of sexual functioning, from the desire to have sex to overall satisfaction.3 Certain cancers (eg, cancer of the breast, cervix, prostate, or testes) have a direct effect on sexual functioning. Cancer of the genitalia may affect nerve and blood supply to the area, which may affect sexual response even though it may not affect desire or interest in sex. Other cancers can have a very real affect on self-image, such as cancer of the head and neck. SEXUALITY INFORMATION NEEDS OF PATIENTS WITH CANCER What do patients want to know about sexuality? The state of information sharing related to sexuality has been investigated. One study has looked at what questions men with prostate cancer want answered. Five of a possible list of 93 questions generated by the researchers related to sexuality. These included questions about whether treatment will affect sexual functioning, and for how long, if left untreated, will sexual functioning be affected; could having sex make the cancer worse; could having sex with cancer adversely affect a partner; and can a man have sex during the treatment?4 A multinational European study found that 23% of men with prostate cancer had received written material related to sexuality, but 46% stated that sexuality counseling would have been helpful.5 Similarly, data have been collected regarding sexuality information in female cancer survivors. A study of an education intervention with women diagnosed with gynecologic cancer after diagnosis was conducted.6 Participants were given a book about sexuality and cancer and were encouraged to discuss their concerns with one of the investigators, who had a background in both nursing and psychology. They were asked to complete a number of measures after the intervention, including a knowledge test. Ninety-four percent of women stated after the intervention, that they now had a clearer understanding of sexuality and cancer; 17% wanted even more information. Robinson et al7 reported on the effectiveness of a 3-hour group intervention to increase the compliance with vaginal dilation in women who had radiation therapy for gynecologic cancer, noting that younger women (< 45 years) were more likely to follow recommendations for dilation. Sexual outcomes after treatment for gynecologic cancer were the subject of a study by Capone et al.8 Participants were divided into two groups; a control group received routine presurgical information related to sexuality and the other group participated in four individual counseling sessions with a psychologist. One year after treatment, 57% of the intervention group had returned to their usual frequency of intercourse, compared with only 16% in the control group. Of course the measurement of frequency of intercourse as an outcome does not reflect changes in desire and arousal, which may be altered. Corney et al9 studied women who had radical pelvic surgery for cancer of the cervix and vulva. Twenty-six percent of those interviewed stated that they needed more information about sexual matters related to the surgery, and 22% stated that their partners needed additional information. A more recent needs assessment of 73 women with gynecologic cancer attending follow-up care found that almost half the participants had received little or no information on sexuality and cancer, while 60% of the sample wanted more information.10 Preferred timing for information was after diagnosis but before treatment (23.3%), or after completion of treatment (39.5%). The women in this study preferred one-on-one discussion with a health care provider (60.3%) or a pamphlet (44.8%) to receive this information. Women recognize that lack of information plays a role in anxiety and fear.11 However, a group of Dutch researchers found that 67% of women with early gynecologic cancer had discussed sexuality with their care providers by 6 months after treatment, and 79% were satisfied with the information they were given, but some wanted additional written information.12 HEALTH CARE PROVIDERS AND SEXUALITY Sexuality is an integral part of normal life for most individuals and is an important aspect of quality of life. As individuals with cancer live longer, sexual issues become increasingly more important, and health care providers must be prepared to assess problems in this area and to provide anticipatory guidance related to treatment and the resumption of sexual activity. While some patients will initiate the discussion, it is incumbent for care providers to be proactive in providing information in a timely manner. Nonetheless, available information indicates that patients are not routinely questioned about sexual practices, and little teaching or counseling is provided.13 Health care providers may be reluctant to ask questions about their patients’ sexual functioning because they are embarrassed and not comfortable with their own sexuality, may not believe that sexuality is part of the presenting problem, or may feel that they are not trained adequately to deal with sexual concerns.14 Some feel that asking about sexuality is an invasion of patients’ privacy and state that they do not know appropriate interventions for identified problems.15 Even though patients have said that a discussion of sexual concerns is appropriate,16 health care providers are more likely to wait for the patient to initiate the discussion than to ask questions of the patient.17 The timing of enquiry is seen to be important, and the perception that the patient is not ready may also influence the decision to ask questions or offer information.18 The lack of sexuality education in medical and nursing school curricula may also play a role; questioning patients about sexual functioning is not taught as a routine part of the patient encounter and so may be forgotten. The emphasis of care may be so focused on cure and alleviation of symptoms, that sexual functioning may be ignored. The end result of these barriers is that the topic is not routinely included, and, as a result, patients do not receive holistic care that focuses on all aspects of human functioning. In some instances, sexual problems or dysfunction may not be recognized and thus not addressed. Talking about sexuality may be perceived as a large barrier that is difficult to overcome; however, there are some relatively simple strategies to include this as part of clinical care. The first is to address personal attitudes that may be preventing the health care provider from including this topic in physician or nursing assessment and care. Personal attitudes to sexuality need to be assessed, and this can be done privately or at workshops, where opportunities for discussion abound. There are numerous ways to become educated in this area, including a number of textbooks dealing with the topic,19,20 as well as dedicated journals. The number of workshops and conferences dealing with this continues to grow. Good communication skills are essential. Incorporating sexual history taking and counseling needs to become a part of standard medical education at all levels of training. MODELS FOR INCLUSION OF SEXUALITY INFORMATION One way to include the topic of sexuality into practice is to use the PLISSIT Model,21 which has been used extensively and is easy to implement. The first level of this model (P = permission) involves giving the patient permission to talk about sexual issues. An example of giving permission is the statement, "Women undergoing this procedure often have questions or concerns about sexuality. Is there anything you would like to talk about?" The second level, limited information (LI), refers to factual information given to the patient in response to a question or observation. The statement, "While you should not have penetrative intercourse until you have had your 6-week postoperative medical check up, it is fine to kiss and cuddle with your partner. Don’t worry if you find yourself becoming aroused...this is not harmful and will actually speed healing" illustrates this level of the model. The third level involves making a specific suggestion (SS) to the patient, which requires a deeper level of expertise. Many heath care providers would refer the patient for sexuality counseling at this point. An example of this is the statement, "If you find penetrative intercourse painful, particularly deep thrusting, you may want to suggest to your partner that you use a side-by-side position, or that you are on top. In this way, you can control the depth of penetration and the speed of thrusting, which will lessen the chance of you experiencing pain during intercourse." Finally, the fourth level refers to intensive therapy (IT) needed for severe or more long-standing sexual problems. The following statement would be appropriate: "It sounds to me that the sexual abuse you describe has had long lasting effects on you. I would like to refer you to Dr X, who is an expert in this area and who would see you for a number of appointments to deal with these issues." Thus, the PLISSIT Model is essentially a framework that guides in giving information to patients. The BETTER Model22 was developed to assist health care providers to include sexuality assessment in the care of patients with cancer. It is similar to the PLISSIT Model in that the first level of intervention involves bringing up the topic (B). The second level (E) involves explaining that sexuality is part of quality of life, and patients should be aware that they can talk about this with the care team. Care providers should then tell (T) the patient that appropriate resources will be found to address their concerns, and that while the timing (T) may not be appropriate now, they can ask for information at any time. Patients should be educated (E) about the sexual side effects of their treatment, and finally, a record (R) should be made in the patient chart to report that this topic has been discussed. Another strategy is to include sexual concerns or a request for additional information in routine health surveys that patients complete before seeing their health care provider. Electronic medical records can also include a prompt for the care provider to ask the question. CONCLUSION Sexuality is an important part of normal human functioning, but this is one aspect of care that has been largely ignored by health care providers for a number of reasons. While patients want to talk about this issue, they want the health care provider to raise the topic. In turn, health care providers are reluctant to initiate the discussion, preferring to wait for the patient to voice concerns. The result is a deafening silence. It is time to acknowledge that in the interests of providing patient-centered and holistic care, we must initiate the discussion with our patients. THE CASE REVISITED The patient was referred to a sexuality counselor who explored both the information needs of the patient as well as her anger with staff. The patient admitted that she had been given information soon after diagnosis about the potential for sexual side effects of the treatment, but at the time, she was thinking about her survival. Since recuperating from the surgery, she and her husband have tried to resume sexual activity, and on the few attempts that they have made, she experienced pain. She recalls being given some information about the use of dilators to prevent vaginal stenosis but is unsure where to get them and how to use them. The sexuality counselor worked with the patient on resolving these issues, and an educational session for the radiation oncology team members was organized to encourage them to provide patients with appropriate and timely information related to sexual functioning and the side effects of treatment. Author’s Disclosures of Potential Conflicts of Interest The author indicated no potential conflicts of interest. NOTES Authors’ disclosures of potential conflicts of interest are found at the end of this article. REFERENCES 1. Rutherford M, Foxley W: Awareness of psychological needs, in Penson J, Fisher R (eds): Palliative Care for People with Cancer (ed 2). London, England, Arnold, 1995 2. Grigg E: Issues of sexuality and intimacy in palliative care, in Penson J, Fisher R (eds): Palliative Care for People with Cancer (ed2). London, England, Arnold, 1995 3. Andersen B, Ven Der Does J: Surviving gynecologic cancer and coping with sexual morbidity: An international problem. Int J Gynecol Cancer 4:225-240, 1994[CrossRef][Medline]
4. Feldman-Stewart D, Brundage M, Hayter C, et al: What questions do patients with curable prostate cancer want answered? Med Decis Making 20:7-19, 2000 5. Kirby R, Watson A, Newling D: Prostate cancer and sexual functioning. Prostate Cancer Prostatic Dis 1:179-184, 1998[CrossRef][Medline] 6. Robinson J, Scott C, Faris P: Sexual rehabilitation for women with gynecological cancer: Information is not sufficient. Can J Hum Sex 3:131-142, 1994 7. Robinson J, Faris P, Scott C: Psychoeducational group increases vaginal dilation for younger women and reduces sexual fears for women of all ages with gynecological carcinoma treated with radiotherapy. Int J Radiat Oncol Biol Phys 44:497-506, 1999[CrossRef][Medline] 8. Capone M, Good R, Westie K, et al: Psychosocial rehabilitation of the gynaecologic oncology patients. Arch Phys Med Rehabil 61:128-132, 1980[Medline] 9. Corney R, Crowther M, Everett H, et al: Psychosexual dysfunction in women with gynecological cancer following radical pelvic surgery. Br J Obstet Gynaecol 100:73-78, 1993[Medline] 10. Bourgeois-Law G, Lotocki R: Sexuality and gynecological cancer: A needs assessment. Can J Hum Sex 8:231-240, 1999 11. Rustoen T, Begnum S: Quality of life in women with breast cancer: A review of the literature and implications for nursing practice. Cancer Nurs 23:416-421, 2000[CrossRef][Medline] 12. Kylstra W, Leenhouts G, Everaerd W, et al: Sexual outcomes following treatment for early stage gynecological cancer: A prospective multicenter study. Int J Gynaecol Cancer 9:387-395, 1999[CrossRef][Medline] 13. Gamel C, Davis B, Hengeveld M: Nurses’ provision of teaching and counseling on sexuality: A review of the literature. J Adv Nurs 18:1219-1227, 1993[CrossRef][Medline] 14. Merrill J, Thornby J: Why doctors have difficulty with sexual histories. South Med J 83:613-617, 1990[CrossRef][Medline] 15. MacElveen-Hoehn P: Sexual assessment and counseling. Semin Oncol Nurs 1:69-75, 1985[Medline] 16. Waterhouse J: Nursing practice related to sexuality: A review and recommendations. N T Research 1:412-418, 1996 17. Matchota L, Waterhouse J: Current nursing practice related to sexuality. Res Nurs Health 16:371-378, 1993[Medline] 18. Herson L, Hart K, Gordon M, et al: Identifying and overcoming barriers to providing sexuality information in the clinical setting. Rehabil Nurs 24:148-151, 1999[Medline] 19. Hyde J, DeLamater J, Byers E: Understanding Human Sexuality—Canadian Edition. Toronto, Ontario, McGraw Hill Ryerson, 2001 20. Rathus S, Nevid J, Ficher-Rathus L: Human Sexuality in a World of Diversity (ed 4). Toronto, Ontario, Allyn and Bacon, 2000 21. Annon J: The Behavioural Treatment of Sexual Problems. Honolulu, HI, Enabling Systems, 1974 22. Mick J, Hughes M, Cohen M: Sexuality and cancer: How oncology nurses can address it BETTER. Oncol Nurs Forum 30:152-153, 2003 (abstr; suppl 2) Submitted May 18, 2004; accepted October 12, 2004.
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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