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11c bolte zebrackaya

  1. 1. Seminars in Oncology Nursing, Vol 24, No 2 (May), 2008: pp 115-119 115 OBJECTIVES: SEXUAL ISSUES To understand the unique impact of cancer on the psychosexual develop- ment of adolescents and young adults and to identify concrete approaches IN SPECIAL for broaching the topic of sexuality and sexual function. DATA SOURCES: Review and research articles, clinical expertise. CONCLUSION: POPULATIONS: It is critical to address sexual health and fertility issues with young adults as early as the diagnosis to offer the ADOLESCENTS AND patient an opportunity to ask ques- tions, make true informed decisions, and feel comfortable coming back and inquiring about difficulties he/she has YOUNG ADULTS later during treatment or afterwards. IMPLICATIONS FOR NURSING PRACTICE: SAGE BOLTE AND BRAD ZEBRACK N Oncology nurses are often the first health care professionals to identify URSES and social workers are often the first health care and address sexuality concerns in oncology treatment settings. By professionals to identify and address sexuality concerns emphasizing the importance of sexu- in inpatient and outpatient oncology settings. Current ality and intimacy for adolescents and research suggests that patients welcome oncology staff to inquire young adults throughout the cancer about their sexuality and are willing to discuss sexual concerns.1-3 experience, oncology professionals However, patients rarely initiate this conversation; neither do can be effective change agents in advocating for their patients. health professionals.4,5 Studies suggest that adolescent and young adult (AYA) cancer KEYWORDS: survivors experience challenges or dissatisfaction around sexual Adolescent, young adult, cancer, relations and intimacy.6-9 Thus, the oncology team must claim sexual function, sexuality. responsibility for addressing this important component of health, life, and quality of life, with every patient – young or old. For AYA patients and survivors, addressing sexuality and intimacy concerns is an acknowledgement of the importance of critical de- velopmental tasks involving identity development, sense of self, and formation of safe and healthy intimate relationships. The pur- pose of this article is to review how cancer affects AYA’s attitudes, behaviors and desires related to sexuality and physical intimacy, and offers clinical guidelines for addressing sexuality issues with Sage Bolte, ABD, LCSW, OSW-C: Life this population. with Cancer, INOVA Cancer Services, Fairfax, VA. Brad Zebrack, PhD, MSW, MPH: University of Southern California School of CANCER AND SEXUALITY Social Work, Los Angeles, CA. Address correspondence to Brad Zebrack, S PhD, MSW, MPH: USC School of Social Work, exuality is one component of an individual’s desire for inti- 669 W. 34th St., Los Angeles, CA 90089-0411; e-mail: zebrack@usc.edu macy, and opportunities for intimacy (or lack thereof) can greatly impact quality of life. Further, having cancer does not make the desire for healthy sexual function and intimacy disap- Ó 2008 Elsevier Inc. All rights reserved. pear. Cancer and its treatments impact sexuality and intimacy, re- 0749-2081/08/2402-$30.00/0 gardless of age, race, sexual orientation, gender, or socioeconomic doi:10.1016/j.soncn.2008.02.004 background.1,4,10-13 Furthermore, sexual dissatisfaction not only
  2. 2. 116 S. BOLTE AND B. ZEBRACK affects the person being treated for disease, but thereby preventing them from participating in also his or her partner and overall current or fu- normal and age-appropriate activities, including ture relationships.14 sexual experimentation and developing intimacy. ‘‘Cancer survivors often experience long-term Some AYAs adjust to the changes in their sexual changes and obstacles, such as impaired immune desire and function without distress. Others experi- response, vital organ dysfunction, and hormone ence increased distress, depression, or anxiety, changes resulting in infertility, altered sexual func- which then indirectly influences sexual function. tion, cognitive changes, ongoing fatigue, depression, When distress is high, sexual desire is low, and there- anxiety, family distress, and economic challenges, fore sexual response is challenged.25 Young adults to mention only a few.’’15 p4 Generally speaking, sex- may find themselves confused or embarrassed about ual function can be influenced by changes in libido, the sexual problems they are experiencing, may not reproductive capability and potential, lowered or- be aware they are related to cancer treatment, gasmic intensity, and body image concerns as they and hesitate to raise the issue with health care relate to weight changes, hair loss, and surgical scar- professionals. ing. Cancer and its treatment, as well as late or delayed effects associated with treatment (eg, early menopause, increased risk of osteoporosis, cogni- IMPLICATIONS FOR ONCOLOGY PRACTICE tive delays or defects, infertility, and chronic fa- tigue), can affect developing sexual behaviors, attitudes, and identity in AYAs.16-20 Altered percep- tions of body image and self-esteem, changes in rela- I t is critical to address sexual health and fertility issues with young adults as early as the diagno- sis to offer the patient an opportunity to ask ques- tionships, and other social life challenges can take tions, make true informed decisions, and feel a significant toll on AYAs, for whom exploring and comfortable coming back and inquiring about dif- developing sexual and intimate relations is the ficulties he/she has later during treatment or after- norm.19,21,22 wards. In terms of clinical assessment with regard to sexuality issues, every cancer treatment center THE IMPACT OF CANCER ON THE DEVELOPING could be using quality of life screening instru- ments on admission and completion of treatment. SENSE OF SELF AND RELATIONS WITH OTHERS Selecting a screening instrument that includes questions about sexual function, relationships, I solation and alienation are commonly reported among AYA patients and survivors as they often miss out on experiences that their peers are enjoy- and body image would afford the team an under- standing of the patient’s needs and concerns. Ask- ing a simple question during patient assessments ing, such as dating, leaving home and establishing on sexuality such as ‘‘On a scale of 1 to 5, with 5 independence, going to college, pursuing gainful being highly satisfied and 1 being not satisfied at employment, getting married, or having chil- all, are you satisfied with your intimate relation- dren.23 For example, a 14-year-old girl who, be- ships?’’ or ‘‘On a scale of 1 to 5, with 5 being highly cause of treatment, has not yet begun menses satisfied and 1 being not satisfied at all, how satis- anxiously waits to finish treatment so she can fied are you about your sexual function?’’ Each feel like she ‘‘fits in’’ with her girlfriends. A young patient could be offered a sexual health resource high school freshman, having recently started list on admission or initial diagnosis to normalize treatment, anxiously awaits the appearance of questions and concerns around sexuality. Along facial hair after treatment to ‘‘finally not look like with providing a resource list, a member of each a little boy.’’ The loss of facial hair, pubic hair, team could be prepared and designated as the and menses may take on very significant meanings ‘‘sexual health expert,’’ insuring every patient has to AYAs. Furthermore, a young patient’s view of the opportunity to be assessed and provided with him/her self may be tied up with his or her socially information. Adolescents and their parents can defined roles or positions (eg, student, father/ be given this information separately or together mother, employee). When this role or position is by making the assessment part of every new lost or significantly changed because of cancer, patient orientation. the resultant loss creates alienation from peers.24 The widely referenced PLISSIT (Permission, Cancer may deprive AYAs from being understood Limited information, Specific Suggestions, Inten- by same-age peers who are physically capable, sive therapy) model is an instructive guide for the
  3. 3. SEXUAL ISSUES IN SPECIAL POPULATIONS 117 health professional to use in addressing sexuality Always use neutral language, such as ‘‘are you dat- issues faced by young persons with a disease like ing anyone?’’ instead of ‘‘do you have a boyfriend?’’ cancer.5,26-28 This model is discussed in depth in Obtain a clear understanding of the patient’s defini- the assessment chapter elsewhere in this issue. tions of sex, as many adolescents and young adults The model is used here to organize the content do not consider oral sex to be sex. Discussions of specific to AYAs. safe sex techniques and safety issues should be part of the pre-treatment as well as post-treatment Permission education because AYAs may believe if they are infertile they are excused from safe sex practices. Health care providers can offer permission for sex- Indeed, male young adult survivors of childhood ual difficulties to exist and obtain permission from cancer have suggested that they did not use con- the patient, partner, and parent(s) to initiate sex- doms because they believed they were infertile ual discussion and legitimize sexual concerns. and thus incapable of getting a partner pregnant.18 Knowing that most patients, and especially AYAs, If the patient is not in a sexual relationship, ad- will not initiate conversation about sex, sexuality dress the issue of building and maintaining inti- and intimacy, a health care provider must first de- mate relationships. Offer suggestions as to how cide whether it is appropriate to address this issue the AYA can maintain friendships. For example, in the presence of the parent(s) or partner. If un- prompt the AYA to have friends come over when sure, ask to speak to the patient alone, stating ‘‘I he/she feels up to it. Have friends bring food or would like to meet privately with her for a few mo- a movie, or go for a walk together. Ask a close friend ments to go over any questions or concerns she to accompany him/her to a doctor appointment or may have and verify her understanding of treat- treatment. These simple suggestions may not be ment procedures and then I will bring you back obvious to the patient during anxiety-provoking into the room for further discussion.’’ Assent, along periods of treatment. Maintaining friendships and with parental consent, is critical for adolescents. normal social relationships is a critical component Assent provides adolescents with the opportunity of healthy psychological and social development to put forth input in their treatment and to ac- for this age group. knowledge they have a full understanding of the impact treatments may have on their sexual func- Limited Information tion and fertility. The responsibility lies with the provider to know state laws and rights to privacy Health care providers can offer limited informa- and sexual health education for underage minors. tion, address myths, and gently re-educate patients To enable an AYA to discuss issues related to around their sexual health questions with brief ed- sex, a health care provider might say, ‘‘Often times, ucation and resources. If an AYA states he/she is after numerous treatments or disease progression, sexually active or interested in becoming sexually a young person’s thoughts about him/herself and active in the near future, then the health care pro- relationships, including sexual relationships, may fessional might provide information about how be affected by treatment or its side effects. Some- cancer and its treatment may affect sexual or inti- times cancer and its treatments affect relationships, mate relations. An oncology provider can approach especially when you don’t have enough energy to issues using a general and educational tone saying, hang out with your friends. How has cancer affected for example, ‘‘many young women experience fa- your thoughts about your relationships, sexual or tigue and other sexual side effects that impact their non-sexual, between you, your friends and/or your relationships, such as lowered libido, and may be partner?’’ The opportunity for addressing concerns concerned about their abilities to engage in any is provided by generalizing and normalizing com- sexual activity, out of fear of pain or failure to please mon sexual concerns and offering permission to dis- their partner, decreasing or stopping sexual activ- cuss sexuality.27 It is also essential to provide ity altogether. Water-based lubricants, the use of culturally relevant materials and culturally sensitive vaginal dilators, and experimenting with more interventions that account for religious and socio- touch and caressing can often assist with managing cultural values. any anxiety or pressure to perform. Would you like Health care providers should never make as- to talk about what you can do to help you manage sumptions about sexual history or sexual orienta- your fatigue or anxiety as it relates to sex or your re- tion when assessing and addressing AYA patients. lationships?’’ Offer the patient a list of resources for
  4. 4. 118 S. BOLTE AND B. ZEBRACK the management of fatigue as it relates to desire and Intensive Therapy sexual function, such as the American Cancer Soci- ety’s ‘‘Sexuality, for the Woman with Cancer and Because intercourse or sexual intimacy as they Her Partner.’’28 Additional resources are found in once enjoyed it may no longer be possible, it also the article on resources elsewhere in this issue. is important to offer patients opportunities to ex- Connecting AYAs to peer support groups, websites, press their feelings about this important loss in and retreat programs specifically created for the their lives. For some young adults, their own or younger survivor can help decrease feelings of iso- their partner’s concerns, fears, and feelings of lation and hopelessness, as well as promote their loss or ambivalence accompanied by a lack of inti- ability to address similar concerns.29,30 macy may create thoughts of being unloved or un- appreciated. Oncology providers can help young adults and their partners explore these issues, as Specific Suggestions well as ways of maintaining sexual and intimate moments, or else refer them to a trusted network To help an individual or couple redefine their ‘‘new of colleagues who can further address sexuality normal’’ or expectations for intimacy (sexual or concerns. These professionals may include, but non-sexual), avoid medical jargon, understand are not limited to, physical therapists specializing how sexuality was expressed and pleasure was in pelvic floor exercises or capable of helping achieved before cancer, and offer specific sugges- patients with creative movement/positioning, tions (for example, advise the use of pillows under a sex therapist (www.aasect.org), a clinical nurse joints to help provide cushion and support, or en- specialist, oncology social worker, gynecologist, courage taking pain medication 1⁄2 hour to 1 hour be- urologist, and/or endocrinologist. Some patients fore intimate engagements (sexual and non-sexual). may benefit from a referral to a mental health pro- Discuss redefining sexual intimacy as mutual mas- fessional for more intense assistance with their turbation or time spent touching and caressing sexual health concerns, so it is critical to know one another. Stay sensitive and aware of the pa- your own skill level, comfort level, and ability to tient’s and partner’s definitions of sexuality and inti- provide further assistance. macy and the cultural and religious implications that may influence these. Young adult cancer survivors may need to get cre- CONCLUSION ative in their sexual routines. For example, taking Viagra (Pfizer, Inc, New York, NY) or using a clitoral sensitizing agent to enhance sexual response may be beneficial. Vaginal dilators may be needed for the W ith young adult survivorship on the rise in those diagnosed with pediatric or adult can- cers, sexuality is a critical area to be examined. female adolescent or young adult in premature ovar- Sexuality and intimacy are important components ian failure or early menopause. AYAs may benefit of a cancer survivor’s quality of life, impacted by from rehearsing how they might disclose their survi- the diagnosis and consequential treatments. Un- vorship to someone they are romantically inter- fortunately, many of these treatments and side ef- ested in. Role-playing their script with a friend fects are not as likely to resolve themselves in the might assist in lowering their anxiety about dating. short-term, and some may be permanent, requir- Most of the late effects impacting sexual function ing AYAs to redefine a ‘‘new normal’’ for intimacy can be managed with creativity, enhancement patterns, sexual behavior, parenting, and how aids, and medications. Survivors can maintain he/she may define their sexual self. By emphasiz- hope in remembering that the skin is the largest ing the importance of sexuality and intimacy for organ, and the brain is the most important organ, AYAs throughout the cancer experience, oncology so there are endless possibilities to sexual arousal professionals can be effective change agents in ad- and satisfaction, in spite of cancer treatments. vocating for their patients. REFERENCES 1. Schover LR. Counseling cancer patients about sexual 2. Cull AM. The assessment of sexual function in cancer function. Oncology 1999;13:1585-1591. patients. Eur J Cancer 1992;28:1680-1686.
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