Woet L. Gianotten1 and Yacov Reisman2
(1)
Rehabilitation Centre De Trappenberg, Huizen, The Netherlands
(2)
Amstelland Hospital, Amstelveen, The Netherlands
Woet L. Gianotten (Corresponding author)
Email: woetgia@ziggo.nl
Yacov Reisman
Email: uro.amsterdam@gmail.om
To be able to deal with the topic of sexuality after cancer, one needs more than knowledge alone. For proper care, one needs also an amount of skills and a proper attitude.
Whereas most of this book will offer knowledge (supplemented with aspects of attitude), this chapter will mainly focus on developing the necessary skills and we will give some practical examples. Underlying this chapter (and this book) are some basic assumptions:
1. 1.
2. 2.
3. 3.
4. 4.
5. 5.
Although that seems simple, adequately talking about sex proves to be rather difficult for most parties that are involved in cancer care. Many highly qualified medical and psychosocial professionals have problems addressing sexuality and intimacy with their patients. This is true even for many psychiatrists and psychotherapists and even for a fair amount of gynecologists and urologists. One of the explanations is that in many countries sexuality is not integrated in the academic and vocational curricula.
Among the professionals who include the topic of sex in their research, many feel safe distributing questionnaires on sexual and intimate behavior. Whereas this can be excellent for general development and overview, it usually will not reach the level of personal needs. Doing good research on sex is very different from providing proper sexological care. Talking sexology is rather different from talking sex.
One reason for this professional silence is the dilemma between getting close enough to the patient to discuss the issue and keeping enough professional distance so as not to become too intimate.
A more common reason for the silence among professionals with regard to “talking sex” lies in the taboo on discussing intimate matters. In spite of the sexual revolution and the social openness on sexuality, talking with someone about erection, orgasm, being horny, becoming wet or staying dry is a bridge too far for many professionals. Not only for professionals, the same goes for patients and partners. They also have their inhibitions and taboos (e.g., “Shouldn’t I be happy to be alive?”). Even with serious sexual disturbances, the majority of them will not address sexuality issues.
This creates a problem in the medical care where we (the health care providers) usually delay addressing a problem till it has been put forward by the patient. Is the solution then maybe in trying to guess for which of the patients or couples is sex relevant and for which it is not? Such thinking results from another handicap-inducing opinion in our society and in the media: the general idea that sex is only for the young, the healthy, and the beautiful. But the need for sexual expression and intimacy does not cease with age, getting cancer, or increasing weight, wrinkles, and grey hair.
So, we have to look for another way to ascertain for which of our patients are sexuality and intimacy important. Therefore, we have to learn “to proactively talk sex.”
The challenge lies in how to make this change.
The general experience is that health care professionals cannot learn how to talk about sex just by watching other people do so. They have to learn by practice and practical exercises, which need to be a major element in training. We wish and hope that in the future each medical faculty and each vocational training program for health care professionals will include a basic curriculum about human sexuality. Part of this should be training in practical skills, where one can learn how to ask about sexuality and how to develop a balanced relationship between one’s own sexuality and the health care role.
Over the last two decades, several educational programs have been developed for health care professionals who are dealing with chronic disease, cancer, or physical impairment and who want to increase their expertise in matters of sexuality and intimacy. We will describe in some detail three of those programs/approaches, each with some of their typical elements, with some advantages and disadvantages:
1. 1.
2. 2.
3. 3.
Various elements can be mixed and models adapted to the needs of a group (e.g., depending on the type of cancer; or the type of professions) and on the practical possibilities (e.g., finances; available time; time slots with or without interval for exercising in the setting with their own patients).
At the end of the chapter we’ll offer some general remarks on conditions to maximize the chances that the learned stuff is implemented.
7.1 The Workshop Model
Originally, this model was developed for the various disciplines (physicians, nurses, psychologists, speech therapists, etc.) in the physical rehabilitation setting [1]. We will address here various aspects of that approach (with some explanation for why we did so). We try to stick to the rule that each of the three parts (one-way lecturing; small group skills-building; and plenary interactive) does not take more than one-third of the allocated time.
7.1.1 One-way Lecturing
The one-way lecturing contains topics such as:
· Why people have sex
· The “how” of sex (on sexual function)
· What is physically and psychologically needed for that function
· How that process can be disturbed
· Some information on the average relevant female–male differences
In the parts “what is needed” and “how that can be disturbed”, already much can be adapted to the specific cancer, cancer treatment, and patient population.
Part of this process of gathering knowledge can already take place before the actual workshop. Just by reading at home in their own time. Giving relevant information in a lecture just before role-playing has the advantage that it can make talking about sexuality easier (and influencing attitude). For instance by using common words for sexual acts and sexual function it will be easier for the student to use those words later in the role-playing parts.
There is a sequence of topics, with “function” explained before “dysfunction”; “history-taking” before “pretreatment information-giving,” and before “treatment aspects.”
7.1.2 Skills-building
This part focuses on the skills of “really” talking sex: asking about erection, being horny, and so on.
Originally, we did this with roles written down on paper and in small groups of three people with the roles of patient, professional, and observer. Later, we changed to groups of two students and roles via PowerPoint. We call this sexological speed-dating.
After briefly instructing how it works, the participants divide into groups of two persons and decide who of the two will be the first patient and who the professional. Then the “professional” closes his or her eyes. The patient role becomes visible on the screen and the “patient” gets half a minute to read the role and to become that patient with that problem.
Then the screen goes blank and the clock starts ticking (one can see the remaining time slowly moving to zero). After exactly 3 min, the alarm goes off and it is time for feedback. After the feedback, time can be spent on plenary feedback before the participants change roles and the same process begins again with a new role.
The tasks/roles start with simple examples of “everyday” sexual complaints and then gradually increase in difficulty. In the first role, the student gets for instance the task to just ask about sexuality “as though you are a journalist,” whereas later the task will be to do a structured sexual history-taking. At a later stage, some professionals get roles on “dealing with a sexual disturbance.” And some professionals need roles that deal with giving extensive information on the sexual side effects of the treatment strategy that has been chosen for this patient.
Advantages
· The 3 min time slot. The participants are often surprised how much information can be collected (or given) in such a short time. Many busy colleagues are scared that dealing with sexuality (experienced as “dealing with emotional problems”) will be very time-consuming. This 3 min time slot is reassuring for many professionals.
Disadvantages
· Sometimes, professional actors or real patients can be used for playing the patient roles. When that is not possible, a skewed group composition can make the logistics of skill-building via role-playing very complicated. When, for example, 90 % of the workshop participants are female, it is rather difficult to exercise history-taking in a prostate cancer patient. Then, a “Plan B” solution could be: “When you are female, play the role of the patient’s partner.”
Having well-adapted roles for role-playing is a very important element of training. Roles should be:
· Fine-tuned to the students and the type of cancer they are dealing with
· Different in levels (just talking; history-taking; informing on treatment side effects, solving problems)
· Represent not only mainstream, but also the less common groups.
· The single patient with breast cancer who has not yet found her Mr. Right
· The very orthodox aged married man
· Representing not only the disturbances of traditional intercourse, but also the combinations of cancer with less common sexual behavior/needs
· The gay man with colorectal cancer and anal sex in his “love map”
· Representing both cases where sex was not important and cases where sex was and is very relevant
7.1.3 Plenary Interactive
Here the major focus lies in developing practical solutions (intertwined with changes in attitude). Many “practical problems” of participants are in some ways indirect expressions of fear, resistance, and taboo. To learn the skill of “talking sex,” many professionals really have to leave their comfort zone. This is comparable to the situation when medical professionals for the first time had to give an injection, do a vaginal examination, or wash the penis of a patient. We regularly remind them how those skills had also been developed with fear and embarrassment. Here it is important that “the teacher” is at ease in sexual matters and that she/he can deal with the fears of the students, indirectly make clear that their fear is normal, and reconstruct the behavior to workable skills.
Let us give some examples of interaction between student (S) and teacher (T):
S
“I don’t want to ask such questions in the first consultation. There should be an amount of mutual trust!”
T
“I can imagine, but the reality is that, when not addressed in the first contact, it will not happen afterwards! Don’t you think that the patient will trust your professionality?”
S
“Aren’t those questions too intimate?”
T
“What about ‘Can you take off your underpants? Can you open your legs wider? What is the color of your stool? Do you lose urine when lifting something heavy?’ We have learned to ask such questions that are indecent in public encounters, but essential in our professional practice. Is sex so different? Usually not for our patients!”
S
A question of a young female physician: “Can I ask that to an old man?”
T
“You could for a moment step to a meta level. ‘Mr. A. This is normally the phase where I ask some questions on sexual function. But I can imagine that you don’t feel at ease with such a young woman!’ Then the common reaction is ‘Go on! Please, go on!’ Because patients don’t want to be different and being asked can mean that he feels respected as a man or as a human.”
This plenary part is also where the students can bring in histories of the patients they meet in their daily practice. When those case histories are discussed, solutions will be recommended by the students or teacher. This both increases the clinical scope and adds as well verbal skills and attitude, especially when the more “touchy” areas are addressed. An example of an advice in a case of severe dyspareunia after radiotherapy for cervical cancer: “Maybe the husband could tell her that he loves her, but that he doesn’t want to hurt her. After kissing, massaging, and playing with her breasts according to her wishes, he maybe could bring himself to orgasm with his wife in his other arm.” Although that seems a simple advice, many professionals (even young, modern ones) react on such a sentence with a mixture of confusion, jealousy and appeal.
Group competence
· In cancer, we do not work as independent individuals but we are part of a team. Sometimes, one has to refer a patient for a sexual problem to someone who is more specialized in matters of oncosexology, not better because of the sex-talking skill but with a different set of skills. To adequately refer is also a relevant skill.
There is another level of difference. Within a team, some colleagues are rather good at dealing with sexuality, while others have more problems, because of experience, religion, and so on. This is not better or worse and should be accepted without any value judgment. When a nurse is not good at lifting, she asks for a colleague who can handle a heavy patient, and she usually is not judged as being less good at her job. Similarly, the colleague who has problems with the subject of sexuality and hands that task over to a colleague should not be considered less good or frumpy (and the colleague who feels at home in dealing with the topic of sexuality should in the same way not be labeled as “oversexed”). How to deal properly with those differences is group competence.
7.1.4 Homework Skills Exercises
When the training takes place on several days with intervals in between, it can be very useful to prescribe for in the interval“homework exercises” with the own patients. At the end of a training session, they get an assignment adapted to the level of the teaching process. The first time, the homework is for instance: “Please talk with your patients about sexuality. Explain to them that currently you are following a course to enhance your skills in this area. And ask permission to do some kind of interview.” Homework for the next interval is for instance: “History-taking on sexual relationship, sexual function, and sexual identity.”
7.2 The Extended Workshop or Master Class Model
When more time is available and the participants are really motivated, the workshop model can be perfected into a very intense learning process. We used such an approach in one of the World Cancer Congresses.
We will mention several elements of that journey.
Half a year before the workshop, the group had already met via Internet. Every several weeks they received a new homework assignment. One of the first assignments was on answering an extensive questionnaire on experiences and attitude, with, for instance, questions on masturbation, anal sex, solo sex, orientation, old age sex, and on disturbing sexual experiences. And also on using words for sexual parts and sexual acts. This questionnaire, of course, was exclusively for the student and maybe to be discussed with her/his own partner.
Other tasks were reading articles and reacting on the accompanying questions of the teachers. But also talking with their own patients, bringing in clinical questions (and reacting on them). When they finally met in the actual workshop much development had already taken place. Toward the end of the full-day workshop they got another assignment: “Lay down your targets for the near future.” For instance: “From next week I will address sexuality in at least at least 30 % of my patients” or “I will start a course for my colleagues to teach them what I have learned here!” or “I’ll arrange a talk with the head of our department to facilitate establishing consulting hours for oncosexology!” [2].
Advantage
· Such a process is suitable for a major congress. For instance, as a pre-congress workshop.
Disadvantage
· For open interaction in the group (of both teacher and students) one needs an amount of digital support because this entails a closed-group process.
7.3 The Intense Course Model
The European Society of Sexual Medicine in 2007 began an annual 2-week educational residential program, providing health care professionals knowledge and opportunities to learn skills. This “Oxford School of Sexual Medicine” course comprises 75 hrs with experts providing knowledge, interspersed with plenary and small-group discussion, and practical skill perfection in role-playing and exercises with simulated patients [3, 4]. From 2007 to 2012, the courses took place in Oxford and since 2013, in Budapest.
The program includes activities for knowledge acquisition and skill development with:
· Didactic teaching, in the form of lectures and seminars
· Experiential learning, involving simulated patients and role play
· Self-directed learning; personal feedback for learners
This form of program not only intends to provide knowledge and skills but also to provide support and advice to program-registered participants involved in independent research in Sexual Medicine. It creates a forum for sharing ideas and experiences with each other and with more experienced colleagues.
The residential course is considered essential for introduction into the program. Participants hail from a wide range of professional disciplines, nations, and cultures, with varied professional, social, and ethical attitudes toward the full diversity of sexuality and gender and their previous clinical experience in Sexual Medicine is both in content and in quantity very different.
The residential course acts as a form of group learning experience. By continued exposure to positive attitudes toward the diversity of sexuality and gender, both during the formal learning program and in social interactions, it promotes attitudinal and behavioral change. Such a residential program automatically creates intense interaction among the participants. The socializing influence is strengthened because all off-lecture leisure activities take place also with the whole group. This total package creates extensive opportunities to change attitude, to open the mind to other cultures and influences as well as norms, and to develop new skills in talking sex, both for the setting with the patient and for the setting with colleagues.
Advantage
· Such a model allows, for instance, for organizing a group visit to a “sexshop.” In a sexshop they do not sell sex but a wide variety of sexual paraphernalia; videos, vibrators, lubricants, anal toys, cock rings, erotica, and so on. Feeling the various lubricants; experiencing the difference between a strong and a weak vibrator; seeing and having explained the difference between a cock ring for fun and constriction band to prevent urinary incontinence during orgasm; all facilitate the process of discussing sexual matters (especially in the counseling and rehabilitation stages) with attitudinal adaptations as a bonus.
Disadvantage
· This is a very intense investment in terms of money, time, and travel.
7.4 Conditions for Real and Permanent Change
That one very good lecture on oncosexology will be nice for the lecturer and it will tickle some of the audience, but it will not really change much. The same goes for a 4-h workshop. The reason is that the surrounding of the professional is usually too resistant to change (especially because dealing with sexuality is the area of change).
Therefore, a much broader support is needed. Is it possible to establish a working group, get the head of the relevant department motivated, and have a sexual medicine or sexology professional integrated in your cancer unit? This will increase the chances for a real change. We can give two examples of how this has worked. One process took place in a physical rehabilitation setting in the Netherlands where nearly 300 professionals followed a discipline-specific sexological training. The model and process are described earlier in 7.1 [1, 5].
The other process took place more recently in Iceland with a 2-year educational intervention for oncology health care professionals in a University Hospital. This process is described in [6].
References
1.
Gianotten WL, Bender J, Post M, et al. Training in sexology for medical and paramedical professionals. A model for the rehabilitation setting. Sex Relat Ther. 2006;21:303–17.CrossRef
2.
http://www.uicc.org/success-story-uicc-master-course-sexuality-issues-cancer-care
3.
http://www.essm.org/society/mjcsm/the-essm-school-of-sexual-medicine/program-of-the-essm-school-ofsexual-medicine.html
4.
Lowenstein L, Reisman Y, Tripodi F, et al. Oxford School of Sexual Medicine: how are we doing? J Sex Med. 2015;12:59–65.CrossRefPubMed
5.
Post MW, Gianotten WL, Heijnen L, et al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sex Disabil. 2008;26:3–14.CrossRef
6.
Jonsdottir JI, Zoëga S, Saevarsdottir T, et al. Changes in attitudes, practices and barriers among oncology health care professionals regarding sexual health care: outcomes from a 2-year educational intervention at a University Hospital. Eur J Oncol Nurs. 2016;21:24–30.CrossRefPubMed