Support Care Cancer (2009) 17:479–501 DOI 10.1007/s00520-008-0563-5
REVIEW ARTICLE
Nurses’ knowledge, attitudes, and practices regarding provision of sexual health care in patients with cancer: critical review of the evidence Grigorios Kotronoulas & Constantina Papadopoulou & Elisabeth Patiraki Received: 6 August 2008 / Accepted: 9 December 2008 / Published online: 9 January 2009 # Springer-Verlag 2009
Abstract Background The experience of living with cancer is associated with a variety of consequences in several central aspects of a patient’s quality of life, including intimacy, body image, human relationships, sexuality, and fertility. Despite their importance, incidence, and impact on psychosocial well-being, sexual health care (SHC) is a matter not frequently dealt with by nurses in daily practice. Goals of work The purpose of this study was to gather evidence regarding knowledge, attitudes, and behaviors of oncology nurses toward sexual health issues and to identify salient and latent key factors which influence provision of SHC in the context of cancer. Materials and methods A critical review of the literature was conducted over a period of three decades and 18 original research articles were retrieved and analyzed.
This paper was presented as an oral presentation at the 7th Congress of the Balkan Union of Oncology (BUON) in Kusadasi, Turkey, 15-19 October 2008, and it was awarded as the best nursing oral presentation. G. Kotronoulas (*) 1st Department of Oncology, One Day Care Unit, Metropolitan Hospital, 43, Megaloupoleos Street, 114 76, Athens, Greece e-mail:
[email protected] C. Papadopoulou Department of Pathology–Oncology–Hematology, “Attikon” University Hospital, 10, Iroon 1912 Street, 131 76, Acharnes, Athens, Greece e-mail:
[email protected] E. Patiraki National & Kapodistrian University of Athens, 123, Papadiamantopoulou Street, 115 27, Athens, Greece e-mail:
[email protected]
Results A comprehensive data analysis revealed that, although oncology nurses hold relatively liberal attitudes and recognize provision of sexual health care as an important nursing role, they possess limited sexual knowledge and communication skills, while often avoid or fail to effectively respond to patients’ sexual concerns. Nine possible influential key factors have been studied: incorrect assumptions toward sexual issues, comfort, sexual knowledge, professional nursing role, patient- and nurse-related issues, work environment-related issues, continuing education activities, and society-related factors. Conflicting findings are reported. Conclusions The findings of the present study propose that there is an evident need of dispelling the myths about sexual health in cancer care. Besides, continuing education activities and availability of education materials could assist nurses to adequately address sexual concerns while caring for patients with cancer. Keywords Sexual health care . Knowledge . Attitudes . Behaviors . Oncology nurses
Introduction The experience of living with cancer is associated with a variety of biomedical changes and psychosocial consequences, which profoundly influence a person’s life, potentially for a prolonged period of time. In recent years, the content of health care provision has been shifted toward the different dimensions of quality of life affected by cancer, namely physical, functional, psychological, social, spiritual, and sexual [56, 110]. Relative to sexual health matters, disruptions in one’s sense of self may directly or indirectly lead to “an altered or diminished sexual self-concept” [102], thus resulting in disturbance of all related intimacy issues, such as body image and human relationships, as
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well as a person’s sexuality, sexual functioning, and fertility, both as integral parts of one’s sexual life and as targets for sexual health care (SHC) services. Speaking of cancer, initial diagnosis, anti-cancer treatment, and its related side effects, recurrence or advance of the disease, as well as the psychosocial burden of living with cancer, openly threaten sexuality-related issues. Quite reasonably, cancer is considered to be “de-sexualizing” [105], having both a direct effect on a person’s sexual response cycle [10] and an indirect one on body image. Cancer does not need to involve the genitals in order to affect individual sexual life [97]. Pelvic surgery or creation of an ostomy may have the same impact on sexuality as surgery for head and neck cancer that might lead to a facial disfigurement [68, 102]. Irradiation of the genitals, colon, or bladder may also interfere with a person’s sexual functioning [102] and fertility. What is more, there is a potential for all chemotherapeutic agents to cause highly disturbing side effects, which may provoke dramatic changes on a person’s sexual life, affecting his/her appeal and interest to be kissed or to be touched, or his/her ability and mood to perform sexual activities [55, 80, 100, 101, 110]. In addition, decreased or lost fertility can be the result of all forms of cancer treatment [10]; infertility after treatment for childhood cancer can profoundly affect a young person’s sense of self as a sexual human being. Anxiety or depression, despair, feelings of social isolation, lowered self-esteem, fear of abandonment, loss of control over bodily functions, and so on may also affect one’s manifestation of sexuality [85]. Without an appropriate intervention, the aforementioned changes or emotions may preserve and perpetuate a latent sexual dysfunction. Cancer patients’ sexual concerns have been identified as an essential aspect of care, given the great number of relevant research studies conducted worldwide over the last 20 years [3, 8, 11, 12, 16, 20, 27, 40, 42, 61, 83, 96, 98]. Along with the development of the concept of holism, SHC was included as a basic component of nursing care as well, while in nursing research and education remarkable advances were recorded: models for the assessment of cancer patients’ sexuality were developed and, lately, promising intervention projects were implemented for the provision of intensive SHC [2, 4, 13, 24, 34, 35, 45, 58, 59, 62, 67, 71, 72, 74, 75, 91, 93, 103, 106, 124, 125]. Since then, several studies have concluded with some important findings: the majority of cancer patients report sexual issues to be a priority [79, 80]; concerns about sexual function are augmented and sustained after the experience of cancer [97]; a remarkable number of individuals are willing to discuss sexual concerns with their health providers [110], while trained oncology nurses are considered to be explicitly helpful with patients’ sexual problems [4, 75].
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Oncology nurses need to possess deep knowledge as well as exert sound judgment and high level of sensitivity in dealing with patients’ sexual health needs. However, SHC still remains a health matter not frequently dealt with by health professionals in daily practice [56]. ThalerDeMers [110] mentions that in clinical practice the sexual, interpersonal, and reproductive late effects of treatment often are not addressed adequately or are not addressed at all. Indeed, a great percentage of health professionals seem to be reluctant or uninterested to involve in open discussions about sexuality [51] or fertility [99], while patients themselves choose to remain silent, assuming that if sexuality and intimacy were important, health professionals would discuss them [37, 56]. Moreover, although nurses identify possessing a strategic position within the provision of health care, they often seem to fail or avoid addressing, assessing, and discussing sexual problems with their patients [36]. This is somewhat disappointing since both healthy individuals [117] and medical patients [116] strongly agree that nurses should discuss sexual concerns with their patients. Two decades of scientific research, within various clinical settings and populations, support the general conclusion of a lack or infirmity of communication about sexual issues between nurses and patients [21, 22, 43, 44, 60, 64, 70, 104, 114, 118, 119]. The present article focuses specifically on SHC as an aspect of oncology nursing practice. The purpose of this literature review was to gather current evidence as regards views, attitudes, and knowledge of oncology nurses toward sexuality-, intimacy-, or fertility-related issues as well as toward provision of SHC in cancer patients. Main goals were the exploration of the frequency and quality of sexual counseling provided by oncology nurses, as well as the identification of salient or latent factors, which may influence oncology nurses’ behaviors in addressing a sexual dysfunction, taking a sexual history, beginning a discussion on a patient’s sexual problems, or teaching patients with cancer about future changes on their sexual life. The findings of this review may act as a basis for the development of educational programs for nurses about sexuality in the context of cancer care.
Methodology A comprehensive critical review of nursing and healthrelated literature was conducted, using the following search terms: sexuality; sexual health care; sexual intimacy; fertility; cancer; nursing; nurses’ knowledge; nurses’ attitudes; nurses’ beliefs; nurses’ barriers; nurses’ views. Databases included Medline (PubMed) and CINAHL, for a wide period of time between January 1980 and June 2008, given the scarcity of information about SHC in cancer
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patients prior to the selected timeframe. A limit in language was placed, considering only those articles published in English. Original articles published in valid nursing and medical journals were included. Bibliographies of relevant textbooks were also searched to locate additional literature. Selection of journal publications was based on the following eligibility criteria: original articles addressing knowledge, attitudes, and behaviors of oncology nurses in providing SHC (regardless of patients’ age), in several oncology settings, within the selected time frame. Studies with ambiguous formation of the sample being studied (mixed professions or non oncology nurses), publications for the development of a research instrument, as well as dissertation research reports, were excluded from this review.
Results According to the aforementioned inclusion criteria, a total of 67 articles were retrieved. However, on closer examination 49 articles were not relevant to the review’s subject, and they were excluded for several reasons (Fig. 1). The final sample consisted of 18 (26.8%) primary research reports, which were read, critiqued, and systematically assessed for the purposes of the review. Major themes and findings were identified for each of the studies. Methodological characteristics of the eighteen studies analyzed are summarized in Table 1.
Fig. 1 Procedure of selection of review’s study sample based on the specified eligibility criteria (see text)
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Appraisal of evidence and discussion A general approach to the findings reported by the studies suggests a latent, yet existent, sense of unfamiliarity among oncology nurses as regards all related issues of SHC in the context of cancer. Extent of knowledge about sexual issues and nursing education on SHC in cancer patients Varying deficits regarding knowledge about sexual health issues in the context of cancer care are depicted in nurses’ reports (see Table 1). Evidence also makes it evident that lack in one’s knowledge or educational status obstructs concrete provision of SHC. Impressively, oncology nurses experience substantial difficulties even in verbalizing their understanding of sexuality mostly because of its complexity [69], while others express more broad (though less specific) definitions of sexuality [26], thus revealing the lack of a common language to facilitate effective communication about sexual health matters. Apart from the very basics, several studies report on nurses’ deficits in special knowledge regarding the extent and content of SHC. Despite being identified as highly knowledgeable, respondents may claim that patients with advanced cancer might not or surely do not have sexual feelings [26], they may fail to report the most sexual problems that can actually occur in women with ovarian cancer [107], or they seem to be unaware of the consequences of surgery and the potential sexual side effects of chemotherapy (early menopause, infertility) in women with breast cancer [69]. Quinn [86] found that while the nurses were vaguely aware of the fertility options existing for men (such as sperm banking), they did not know what the procedure entailed; consequently, they were rendered unable to offer any kind of effective support. Recently, various methodologically similar studies evinced nurses’ inadequate knowledge regarding sperm banking and fertility options in either pediatric or adult cancer populations [65, 82, 89] (see Table 1). King et al. [65] concluded that although most participants were aware of the standard fertility preservation options for both genders, few knew more experimental ones, or were aware of some fertility institutes and clinics, while most did not have any educational material for their clinics. Inadequate knowledge was also observed among a sample of Dutch oncology nurses specifically when the sexual problem and intervention involved love-making activities, intercourse and masturbation, and when there was a need for planning care through intra- and inter-professional cooperation [38]. Similarly, in a posterior study, 39% of the nurses indicated that they did not refer patients to another health professional to provide sexual counseling [15]. Participants in
Purpose(s)
Tio describe the sexual knowledge and the sexual attitudes of RNs caring for oncology patients, and determine the relationship among levels of sexual knowledge, demographic characteristics, and sexual attitudes.
To examine attitudes of nurses towards sexuality in cancer patients.
Author(s) and date
Fisher and Levin (1983) [33]
Williams et al. (1986) [122] Convenience 211 Registered nurses participating in a regional 2-week cancer nursing continuing education program in the USA
Cionvenience 120 Registered nurses in one government cancer research center in the USA
Sampling and population
Methodology (measurement)
Outcomes
67% claimed that they were comfortable talking with patients about sexuality; only 40% felt any degree of responsibility in doing so. 86% disagreed that people unable to have genital sex are unable to achieve sexual fulfillment as well. 60% never, seldom, or sometimes had told patients that they would be available to discuss sexual concerns over the previous month.
Over 75% agreed that patients can develop closer sexual relationships than they had prior to diagnosis.
Diiescriptive Qiuantitative Sex Knowledge and Attitude Piarticipants’ sexual knowledge was fair and correlational, Test (SKAT) 149 multiple choice questions significantly lower than a group of nurses cross[71 true–false items (knowledge); 35 tested in 1972 (p
