I think the children should know as much as they can understand at their age level. I think it’s important for parents to understand and explain that this is not a punishment. Oftentimes children get this impression because in the beginning catheterization can be uncomfortable, and they equate pain with punishment. They ask, “Why do I have to do this? Why is this being done to me?” All these concerns have to be explained very carefully to the parents, who can then relate the appropriate responses to their child. Our nursing staff is very adept at this.

Stuart Bauer, MD, Department of Urology

 

It helps when parents are very blunt and honest. I’ve seen so many different approaches, from people being very scientific, so regimented, to trying to bury the problem altogether. There’s a spectrum of how parents approach the issues.

I tell parents to be very age-appropriate: you don’t want to explain to a teenager the same way you explain to a two-year-old: “You have to do this!” The teenager will rebel and will not listen. I try to explain to parents that we need to develop a way to talk to teenagers so they understand this will give them autonomy. That’s so important. When a child feels like he or she has no choice, there’s a natural instinct to rebel, a natural instinct not to do what you’re telling them to do because you told them to do that! That’s why it’s so important for the parents and the physician and the nurse and all the people who take care of them to come up with a very consistent plan that emphasizes the child’s autonomy and respect for their body, respect for their pain perception. It should not be the same way for every single child – it should be tailor-made.

Hiep Nguyen, MD, Department of Urology

 

I think the concept that holds true across pediatric care is involve them in an age-appropriate manner – involve them as much as possible in their care, because ultimately they will be responsible for it. And we do place heavy emphasis on transitioning to independence with kids that require lifelong treatments like catheterization. As long as they’re able and they’re ready, the sooner the better to get them independent and allow them to make decisions and to steer their health care.

Carlos Estrada, MD, Myelodysplasia Program, Department of Urology

 

I think the best advice is to simplify things for their child, going back to the idea that bladder needs help to empty. A child may or may not be able to appreciate that, but I think trying to simplify things for the children is the easiest way to go.

Joseph Borer, MD, Department of Urology