Youth and Transitional Care
I had a very interesting meeting last week with a clinical nurse manager based at one of our major children's hospitals about transitional care for youth.
In Western Australia, after a child reaches the age of 16, they must be transferred to an adult hospital. I must admit that the issue of transitional care has not even entered my mind, nor did I realize the impact it can have on the young person in question, their families and their long term management and outcomes. In fact, after spending a couple of hours discussing the issue in more detail, I was alarmed to learn that in extreme cases, some of our young people can face life threatening illness that can be traced back to their initial transition from a children's hospital to an adult hospital.
The problems faced are that in many cases, children spend a great deal of their youth at one facility. The very nature of children's hospitals is one of a vibrant, family focused facility. The staff try their hardest to make a kids stay at hospital as enjoyable as possible and you feel this from the moment you walk through the front doors. In fact, on the day I had this meeting, I couldn't help feel and notice just how warm and friendly the staff were. There were kids in a classroom doing school work and in one room I saw some kids just chilling out playing some video games. In the waiting area I watched a young boy, probably 9 or 10 sitting in a chair. I could tell straight away from just looking at him that he was very upset. I smiled and said hi but did not bother him any further. Shortly after that, a young nurse came bounding up to him and with a beaming smile told him to follow her to their fun room. With that the young boy began to cry and the nurse immediately sat down with him and comforted him. She didn't have to ask him what the problem was, she gave him a cuddle and put her arm around him and said she knew it was. She told him that it was okay to feel down and that he had every right to be angry and fed up with being in hospital. With that he smiled at her and after a few minutes, he got up and slowly walked with her to the fun room. You could tell he is a very unwell boy indeed. What struck me at the time was that the nurse knew enough about this boy to be able to really identify with him and his emotions. This sort of bond is more difficult to find in an adult facility. More on that later.
So with this in mind, I met with the clinical nurse manager who explained to me that quite often, once a child turns 16 they are so overwhelmed by the transfer to an adult hospital that they simply stop going for checkups or treatments. The whole process is traumatic. The hospitals are bigger, more clinical and often do not have the feel of a family orientated facility. All of a sudden they are meeting with new doctors and nurses who do not have the time to spend with them. This is not the fault of our medical staff, it's simply a reality now that they are working to provide help and support to an over-stretched health system. As for the parents of these young people, they are all of sudden dealing with a different set of medical staff, in some cases having to detail again their child's individual issues or medical anomalies that may not be on the various medical records. As the child begins to take more control of their own health condition, the process of transition can mean that they lose focus, confidence in their ability to self maintain and in extreme cases, stop visiting hospitals for their regular consults.
Enter technology, the meeting quickly got around to discussing what we could develop to help youth in the months, years before transition cope better with the process. We looked at a few areas, the easiest and most fun was looking at technical options, the second was partnering with various education institutions to have some of this technology available to students at school and the third was educating adult hospital medical staff on the issues facing kids in this situation.
I am very fortunate indeed to be able to work on this project for a couple of reasons, first, transitional care is quite new in terms of how it's seen in medical circles in Australia. The second is that our target audience just happens to be in the age group that takes to technology likes ducks to water. It's almost natural for kids to just know how to use gadgets. I don't quite know how they have this ability, but they do.
We are now investigating the types of technology we can use to empower kids to manage their conditions and make them more aware of their patient rights and just exactly what to expect when they visit an adult hospital. Some obvious technology types will be podcasts and website access but we have a few other ideas which for the time being, I am unable to disclose. They are however, very exciting and I believe we can make a big difference to these kids. I would be very interested to hear from anyone who has worked in this area of transitional care or has an interest in learning more about it. I got the feeling from the clinical nurse manager that she has really struggled to gain acceptance of the issue. As part of her Masters thesis, she investigated this area and this would seem to have given more prominence to the issue.
I hope this entry has got some of you thinking and when I have finalized my thoughts on other technology opportunities I will post a new entry.