To be able to properly support patients, a different way of working will have to be found. Following the PLISSIT model can help here. The PLISSIT model, a framework developed for nurses to put sexuality on the agenda , consists of four steps: (1) consent, (2) information, (3) suggestions and (4) intensive therapy.
In the first step (consent), the care provider introduces the subject of sexual health and makes the patient feel comfortable about it by listening in an accepting, active and non-judgmental way. The continued support and interest of a care provider is often enough for a patient to alleviate some of the challenges of sexuality. Next, the second step (information) is that the care provider provides limited but targeted and specific information about the effects of the disease on sexuality and the effects of treatment on sexual function. The third step (suggestions) consists of giving patient-specific suggestions regarding changes in the physical and emotional experience of sexuality. Printed information on sexuality and diseases can be used. The third step can also consist of counselling or medication. Most sexual problems can be solved on the first three levels. However, some problems require a final step (intensive therapy). For this, the patient should be referred to a mental health care psychologist/sexologist or a sexual health consultant. In line with the model, the following tips are given for: (1) making the subject of sexuality discussible, (2) identifying sexual problems, (3) empowering parents and patients to prevent and solve possible (future) sexual problems, and (4) referring to other care providers.
How do I make the subject of sexuality discussable?
In practice, it is not always easy to discuss the subject of sexuality. The following reasons have been found for this:
1) Taboo subject for parents: Sometimes parents find it difficult to accept that sexuality is part of their child's development. In addition, it is difficult for young people to talk about it in the presence of parents, partly because of shame about the subject. As a care provider, you can help the patient and his/her parents to make the subject less stressful and to speak openly about it. This can be done: (a) by informing parents at an early stage about the psychosexual development of their child, and (b) by involving parents at an early stage in the discussion about psychosexual development and possible (future) problems. Because the parents are involved earlier, they can prepare themselves for the fact that sexuality is also part of their child's development. If the subject remains emotionally charged with the parents, it may, in some cases, be desirable to discuss the subject separately with the patient. In that case, let parents know in advance that you would like to speak to the young person alone at the next consultation because you want to discuss private topics.
2) Unclarity about timing: It is not always clear what is a good time to discuss sexuality with the patient. This is because psychosexual development differs from patient to patient. It is recommended that the discussion about sexuality be linked to the psychosexual development phases rather than to a certain age. More information about this for parents can be found below. Try to introduce the subject at an early age and come back to it in different consultations in order to create awareness among parents and the child. In this way, patients and their parents become aware that talking about sexuality is 'normal' and part of their quality of life or that of their child. It is important to know that sexuality is more than just sexual intercourse. It can also be about intimacy, entering into relationships, menstruation in women and erectile dysfunction in men. By having patients make a top 3 list with the topics they want to discuss during the consultation, problem areas can be detected.
3) Transition to adulthood: During the transition to adulthood, many patients get out of sight and so do any (future) sexual problems. Before the patient reaches the age of 18, plan a discussion and raise the subject again by discussing the possible (future) sexual problems that may play a role and by telling the patient where to go for support in the future. This conversation can be part of the transition clinic. Hospitals regularly only have the patient's postal data in their files. If they want to invite the patient for a check-up interview and the patient has moved in the meantime, the patient will not be contacted. It is advisable to contact patients via e-mail.
How can I identify problems?
The treating physician has an identification role, but other care providers can also take on this responsibility. The following activities can help to properly fulfil this role:
1) Medical record component: By making sexuality a 'fixed' part of the medical record of patients (as a ticked off subject), the subject of sexuality can be discussed routinely, thus increasing the chance that problems will be identified.
2) Increasing knowledge: By gaining more knowledge about the possible sexual problems in patients with an anorectal malformation/Hirschsprung's disease, more specific questions can be asked and specific information can be offered. Click here for an overview of the possible sexual problems for this patient group.
3) Improve conversation skills: Entering into a conversation about sexuality will not always be easy. It may happen that during the conversation you notice that the patient/young person has a closed or defensive attitude. There can be several reasons for this attitude. For example, it may feel uncomfortable for young people to talk about sexuality with the care provider they have known since childhood. On the other hand, it has also been shown that patients and care providers can build up a relationship of trust through long-term cooperation. This relationship of trust can make it easier to discuss sexuality. In order to make it easier for you to talk about sexuality, you can train your conversational skills. It is easy if you already have an opening sentence for yourself that suits you. There may be the possibility to organise an internal workshop led by a sexologist connected to your hospital. If your care institution does not offer any training, you can raise the subject with your supervisor and together look for ways to set this up. You can also find online tips for conversation skills on the following websites: www.seksindepraktijk.nl and www.zanzu.nl/voor-professionals [Available in Dutch. Open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages]
4) Taking of a sexological anamnesis: The most important tool for identifying sexual problems is the taking of a solid sexological anamnesis. A distinction can be made between a proactive and a reactive anamnesis . A proactive anamnesis consists of just a few questions to screen whether there are any sexual problems and whether there is a need for help. The reactive anamnesis is extensive and can be taken if there is evidence of sexual complaints or if the patient comes with a sexological complaint. See here sample anamnesis questions:
Proactive anamnesis questions:
o If so: questions about the nature of the problem, the characteristics of the main complaint, the burden of the problem and the request for help.
o If so, have you ever discussed this with someone, do you still suffer from these experiences, do you think that these experiences have an influence on your current complaint, do you think that we should take these experiences into account in your treatment, do you have a question for help regarding these experiences?
Reactive anamnesis questions:
o What exactly is the problem?
o How does the sexual response cycle work?
o Is there pain with sexual activity? And if so, when?
o In addition to this problem, are there other aspects of your sexual life that you experience problems with?
o Is the problem always there or are there exceptions? (situative/generalised)
o Has the problem always been there or did it arise later? (primary/secondary)
o If secondary: were there any circumstances that had an influence on the origin of the complaint? (bio-psychosocial)
o What is the effect of the complaint on your sex life?
o What is the effect of the complaint on your well-being?
o What is the effect of the complaint on your relationship?
o Has the problem changed over time?
o What events have influenced the problem over time? (bio-psychosocial)
o What makes you seek help for this problem now?
o What have you done so far to try to solve the problem?
o Can you talk about your sexual relationship?
o Do you know what your partner thinks of the problem?
o Do you agree on what is going on?
o Can you talk to your partner about the sexual problem?
o How does your partner deal with the sexual problem?
o Does your partner have problems with sexuality?
o In addition to the sexual problem, are there other physical or psychological problems?
o What is your medical and/or psychiatric history?
o Do you use medication for these problems?
o Is there a need for a listening ear, information and education or is the patient seeking treatment? And what is expected or desired?
o What goal do you want to achieve?
o What goal does your partner want to achieve?
5) Apply questionnaires: Questionnaires can be used as an accessible way for patients to make their sexual problems known. During the consultation, the discussion can take place on the basis of a questionnaire in which, among other things, questions are asked about the subject of sexuality. Evidence-based questionnaires include the 'International Index of Erectile Functioning, Female Sexual Functioning Index, Female Sexual Distress Scale'. Sample questions can be found online. The questionnaire can be completed at home in advance, or in the waiting room before the consultation. This questionnaire must then be mentioned during the appointment or by means of an appendix to the appointment letter. A disadvantage of using a questionnaire is that the response rate can be low. Another possibility is to have a top 3 list of subjects filled in that the patient wants to discuss during the consultation. Coordinating the questionnaire will have to be assigned to someone within the department. This person will then take care of embedding the process into organisational structures (such as adding sexuality questions to the patient dossier, managing a database with addresses and sending and/or distributing letters).
How do I empower patients and parents?
As a healthcare provider, you can contribute to empowering patients and their parents. With 'empowering' you give the patient the means to deal with possible (future) sexual problems. For example, by providing correct information about their condition and sexuality and by listening to their wishes and needs (showing respect). By offering tools to patients, patients who do not come back after a consultation can still find help. Think about this:
In addition to helping patients, you can also help parents to support their child with possible (future) sexual problems. Tips for this can also be found on this website under the subpage for parents. Support parents and children in normalizing the subject of sexuality by paying attention to the psychosexual development phases from an early age. For each phase it can be discussed how to deal with 'difficult' questions and 'difficult' situations in the environment. A first step is to help the patient to be open about his condition. This openness helps parents and children to find solutions for difficult situations and to make arrangements with school and other parties involved. Children who have something different about their body are told by other children that this is ‘stupid’ or ‘pathetic’. Children can react to this by saying, for example: "What do you think of yourself?" Do you think you are stupid? Are you pathetic? Note that there are many children who live with a physical disability or illness and for example have to keep a diet, never eat peanuts, have to take pills because they can't concentrate and learn well without them. Together with the parents and the patient, you can also consider where the privacy limit for the child lies and how they can discuss this with the teacher at school.
When and to whom do I refer patients?
If you, as a care provider, do not feel well equipped to guide patients and parents on the subject, you can refer the patient to a sexologist. In principle, a sexologist – whether or not in a team – can help independently with all questions and problems in the field of sexuality. For example:
 Annon, J.S. The PLISSIT Model: A proposed Conceptual Scheme for the Behavioral Treatment of Sexual Problems. 1974, Journal of Sex Education and Therapy, 2(1), 1-15.