Transition of Care - Sexuality

Sexuality should be a key consideration for patients with congenital anomalies. Abnormal anatomy, scarring and insecurities can cause problems with body image, thus impacting an individual's sexual development. Normalising the issue as part of a child's broader development is of utmost importance for them to achieve a better quality of life. Indeed, sexuality should be addressed early on in this development. At 3 to 4 years of age, children start getting interested in exploring their bodies, and generally go through a phase of body comparison. Starting from this very young age, patients with congenital anomalies will have to deal with self awareness, and they will need tools to talk about their bodies and why they look different compared to peers. The role of the clinicians is to make parents aware of this phase, so that they will be prepared for their child's questions and ready to support them in a way that's comfortable for both. Clinicians should empower parents to discuss this topic with their child in accordance with the patient's age, encouraging them not to consider it as a taboo. This is the first step to achieve normalization and helps to promote the child's body confidence. When it comes to adolescents, it should be mentioned that they do not like to discuss sexuality with adults, but with peers. Nonetheless, patients with congenital anomalies might find it difficult to express any physical differences they might encounter to their friends. To overcome this potential barrier, they need to receive information about their bodies at an earlier stage at 9 to 10 years old. This will give them additional tools as adolescents to talk about sexuality with peers, and eventually to seek for advice from parents or clinicians. Likewise, by including the topic of sexuality as a standard part of the patient's follow up program, clinicians can normalize the topic, and this makes it easier for them to refer back to it at a later stage. However, in order for clinicians to discuss sexuality, they must be comfortable with addressing the topic, notwithstanding the possibility of a referral to a specialist who is more familiar with talking about sexuality, according to the child's developmental age. Clinicians should be aware that not only children with functional pelvic floor problems may experience difficulties related to sexuality. This topic should be addressed for all children with congenital anomalies or chronic health conditions. There are factors associated with having a congenital anomaly that may impact a patient's self image, such as having scars or anatomical deformities. Some patients may be afraid to talk about their body being different due to feelings of shame or insecurities, which in the long term may impact their sexuality and how they enter into relationships. Colorectal patients who are dependent on bowel management may experience negative associations with this region of the body. This can make it difficult to relax during sexual activity and experience sexual pleasure. There may also be various fears about soiling and uncertainty about possible odors, which the patient may find difficult to talk about. These factors may also impact a patient's sexuality. A psychologist can support the patient to manage these difficult feelings and promote body confidence, and how to make it open to discussion when starting a relationship. Lastly, it is important to build a network of interested clinicians with relevant experience working with patients with congenital anomalies on these topics. This could include a specialist nurse, gynecologist, urologist, psychologist and sexologist. Clinicians can also make use of other resources available, such as online tools, websites and books to educate themselves, their patients and their patients' parents. When addressing the topic of sexuality with the patient, the use of language and terminology used with patients and parents should be consistent. In this regard, age appropriate books can help identify the best terminology for clinicians and parents to use with the patient to further address the topic.