How do you help families adjust?

I think the biggest hurdle is getting the child to start the catheterization program. Once they get over this barrier, things settle down and everyone relaxes, realizing how easy this program actually is. Our nurses are instrumental in achieving this: a gender-specific video is given to the family initially, then the family comes back for another visit with the nurse. If the child or parents are not ready to start the program, everyone talks about the issues involved, and the child and the parents come back a second or third time. Eventually, when the program is instituted, the Urology nurses check with the families several days to a week afterwards to see how everything is progressing. I often see the child about six weeks after the program has been started to ensure that all is going well.

Stuart Bauer, MD, Department of Urology

 

We always offer sort of a buddy system where if families have trouble understanding why or how we’re going to do this, we can say, “Well, listen. We can team you up with a number of families who would be happy to speak with you. They were in your shoes x number of years ago, they have done this, and they’ll tell you how great it is.”
That has been invaluable. Generally families that have good experiences love to talk and love to help other families, and it’s a really nice thing to do and see. That has helped us with families who are having a hard time.

Carlos Estrada, MD, Myelodysplasia Program, Department of Urology

 

If they have a disease that’s more classified, there are usually some support groups, and we’ll try to put them in touch with those first. That’s probably the best way, I think, because the parents in those supports groups have gone through it. But you’ve got to be careful about that – the support groups have to be vetted to make sure they’re helpful, we need to know about them. Not every parent is receptive to support groups; some parents don’t want that, but the ones that do I think it’s helpful.

There are a lot of dolls and videos that we use to explain what catheterization is. I’ve had some success with kids who have worked with a psychotherapist to some degree. You have to use everything you’ve got! The nurses and our staff here are great at talking to the families, working them through it, and that’s pretty much what you have to do.

Richard Lee, MD, Department of Urology

 

We try as much as we can to incorporate specialists in the hospital, such as those in the Coping Clinic, to help this be as smooth of a process as possible. We may advise reward systems for the children, if that could help. We inform them that there are many other children that (unfortunately or fortunately, depending on how you look at it) require this practice as well, and they seem to pick it up quite readily and do very well with it as a part of their lives. Not that that’s going to make it any easier for the individual family or patient in front of us, but we try to reassure them and educate them and advise them this way. If we think it might be a benefit, we will have one family speak with another family or a child speak with another child who has gone through this process or is currently performing clean intermittent catheterization, and we find that that’s a major help. I think it goes back to what we hear quite often: it helps knowing that their child is not the only child here in the hospital doing that, or the only child in their classroom doing that. There are many children who do this, and it’s not something that they tell everybody. Sometimes they don’t tell anybody!

So we try to reassure families and give them advice for sticking up for their child at school, as hard as that can be sometimes, letting us know if there are ways that we can help at school, or with difficult situations anywhere that arise because of their child’s special needs.

Joseph Borer, MD, Department of Urology

 

We send patients home with a backpack full of resources. There’s a really nicely written book for teens. I usually choose that for anyone who’s a tween, an eleven year old or older, and they think it’s kind of cool – here’s something on teens who cath! So they have a book that helps to answer some questions and gives them some ownership and empowerment.
There are also some coloring books and toys available for the younger kids to help them adjust. It’s just another way to help provide that teaching and support to that individual child and family.

Rosemary Grant, RN, Nurse

 

We try to anticipate some of the questions they might have, tell them that catheterization will not cause any problems with sexual functioning or later pregnancy or privacy. And we explain to them that there have certainly been other families who were apprehensive about it, but we also explain to them the benefits and the rationale behind doing it. And then we generally have them come back to meet with one of the nurses in Urology, Diane or Rosemary, who will set up a session time with them to go through the whole process of self-catheterization, from identifying what’s the best catheter size to use to helping them order the supplies. We definitely had some families who in the beginning may say, “You know, there’s no way that we can do this. It just can’t happen.” And again, we explain the rationale behind the process and if there are any other alternatives or if we really feel that this is the best alternative. That’s why I think it’s good when Dr. Bauer is there: he’s been doing this for years and families feel comfortable talking with him. Or if I feel that this family would really benefit from seeing the nurse that day rather than waiting another week, Rosemary and her staff, as busy as their schedule is, have really been accommodating.

And for some families it’s enough to just bring it up, give them the videotape, and let them try to digest it at home. For the most part, once they get to that point, they’re resigned to idea that this is what they have to do. The parents are good about it, and when the kids see that the parents aren’t afraid, that’s when it’s really easier for them to do it. When the parent is really apprehensive or upset, the child picks up on that and it’s hard for them to learn.

Pam Kelly, PNP, Clinical Coordinator, Urodynamics and Voiding Improvement Program

 

I recently saw an eight year old whose mother had been very resistant to cathing, but then he went to live with his dad, and you can see the difference in this child from being cathed. He feels better, he looks better, he’s looking healthier. So I use that a lot, picturing him in my mind, when I’m trying to tell a family that this is going to make things better for you, you’re not going to have leaking, it’s going to be a good thing!

I give families a couple weeks at least to adjust, and a lot of that time is spent hand holding, talking on the phone, giving reassurance. The process of catheterization probably can increase the risk for UTI’s in the beginning, so they’re calling because now they’re worried that something they’ve done has made it worse. With that particular eight year old, there was a lot of hand holding in the beginning, but the dad even said, “This is great. He’s so much better.”

Rebecca Sherlock, PNP, Clinical Coordinator, Myelodysplasia Program