We never advise against sex

Gunilla Andulv

As a nurse, it is important to take the time to listen to your patients. GUCH nurse Gunilla Andulv makes sure to always have at least one hour available, and the conversation often turns to concerns about sexuality and related issues.

The GUCH clinic at Östra Hospital in Gothenburg is one place where they take the time to listen to their patients, many of whom have travelled a long way and appreciate having a one-hour session and seeing the same nurse at every visit. “The fun thing about this job is the close and deep relationships we can have with our patients,” says Gunilla Andulv. “They trust us.”

Trust between nurse and patient is crucial if patients are to feel comfortable asking questions about all the issues that concern them, such as sexuality. “Our patients are just like everybody else, and we never advise against sex,” says Gunilla, “but if you do have a congenital heart defect, you sometimes have to think a little differently, be a bit more careful and protect yourself even more against infections and pregnancy.”

Provide the information early on

When patients transfer from a paediatric cardiologist to adult healthcare and a GUCH clinic in their late teens they receive information about their heart defect as it relates to sexuality, pregnancy and contraception for the first time. “This is a shortcoming,” says Gunilla, “but I know that paediatric cardiologists have started addressing this issue.”

The ideal scenario would, in some cases, be to start talking about sexuality and pregnancy when patients are as young as 10–12. This would be particularly helpful if a girl has a heart defect so complex that, later in life, doctors will advise her against getting pregnant. “It's no fun to have to tell a woman who plans on getting pregnant that it would be dangerous for her.”

Listen to the patient

Gunilla reaffirms the importance of spending plenty of time with patients. As a nurse, one must also be good at reading people, at sensing whether they are comfortable during the conversation, and at being empathic. “Sometimes a question about contraceptives will come up surreptitiously, then we start to talk, and by the end of the conversation we find out that the patient is already pregnant. Others are more direct.”

The are certainly plenty of questions waiting to be asked: patients commonly express concerns about what happens with the heart during sex, and, in fact, whether they should have sex at all. At the GUCH clinic in Gothenburg they choose to downplay matters of sexuality, sometimes with the help of pictures. One illustrates the point that you are able to have sex if you can walk 300-400 metres on flat ground at a brisk pace and then walk up two flights of stairs. “We have shown the series of pictures to parents a few times as well, and some of them were shocked.”

Let the parents take a step back

When the GUCH clinic opened in 1996, it was common for parents to accompany their child to the doctor, even though the child was no longer a minor. Obviously it is more difficult to ask questions about sex and other private matters with one’s parents present. Today Gunilla finds that parents seem less overprotective. She believes that this is because paediatric cardiologists are talking directly to children more often, and at a younger age. As a result, the children are better informed and better prepared to take responsibility for their heart defect. And their parents can relax and take a step back.

“Paediatric cardiologists are brilliant at taking care of the children, and they see the entire family and help them, but the time has come to think about teenagers in a slightly different way, to see them as half-adults and relatively independent patients.”

Thinking along these lines is starting to gain traction in more and more paediatric cardiology clinics as well.