I always find out about the child or young person’s life, likes and dislikes and family. It really helps children and young people know you want to know about all of them, not just the condition that brought them to you and it helps you understand them.
Lindsay-Kay, Adolescent Clinical Nurse Specialist
It makes a huge difference to adherence to treatment listening to children and young people to find out what they dislike. I have some patients who end up on 5 or 6 vitamin supplements a day and they are the first things to go. One of the things that came across when chatting to one of my patients was that having to take all of them in the morning was a hassle and that’s why she didn’t take any. So what we did we did was to split them so that she could take some in the morning and some in the evening.
I find it hard to find out what matters to some teenagers, so I just have to level with them and say “What is your problem? How can we make this better?”
Amy, Practice Educator
Sometimes I ask children and young people to draw three houses, one house of dreams, one house of worries and one house of good things. I ask them to participate in their own way so if they were 8 years then they might be able to draw ideas or if they were older then they could write ideas. It’s about getting them to put what’s important to them in their own words and get it in their voice. Not reporting by parents as that can be a bit biased.
Matthew, Social Worker
I ask my patient in the morning “what’s the plan today” because sometimes they have school or if they don’t have school then I’m like “what would you like to do, we could get the play team up or..” they might be able to be let out of the hospital if they want to go out for the day then we can get stuff done in the morning so that they can go out in the afternoon, this means I know what is important to them and we can agree a plan of care together.
Ben, Student Practice Facilitator
It is so important when we discuss options for treatment to know what matters most to the young person. For example if they are planning on taking medication, will that affect their ability to have a drink. Or it might be around sexuality, and their medication might have an impact on that. There might be certain things that would be good for their health but they cannot do because they will have too much impact on their life, for example reducing screen time. It might be difficult for them to use screens less if they are at college and use computers a lot there.
Anna, Nurse Consultant
It is useful to know what the child or young person likes to do so that you can explain treatment in a way that is meaningful to them and link the long-term benefits to their lifestyle. For example we have lots of children and young people on prophylactic antibiotics and I have one who likes ballet. So I explain to them that “these antibiotics are making sure that there are not a lot of bugs in your lungs which is going to make your breathing better and therefore help you with your ballet.”
One technique that really works is to give children a magic wand and ask what they would do with three wishes, it really helps me understand what is important to them and what they are worried about.
This is their disease, they have lived with this, they know more about it than I do sometimes. By understanding that it helps us make shared decisions.
Amy, Practice Educator
I try to anticipate problems, give them as much control as possible and if they are going to participate in the study, give them choices about what they can decide. Taking part in a research study does impact on their school and it does impact on their education and they often have to attend appointments more regularly. So if we can we coordinate with school, make these visits as easy as possible, get them transport, give them some local anesthetic cream at home so that when they come in they are ready and good to go it all helps.
Shaun, Research Nurse
I look for where the ‘blocks’ might be in reaching a shared opinion; try to get a sense of the bigger picture to understand where the differences in viewpoint may stem from.
I sometimes ask “have you seen any friends recently? What sort of things did you enjoy doing with them? Was there anything that you wanted to do but that you couldn’t do? That must have been pretty rubbish for you, tell me about that” and it helps us work out together what goals are important to the young person.
Anna, Consultant Nurse
It is impossible to know without asking. I had a 8 year old, who was happy to take 15 tablets in the morning and a 16 year old who was happy to take 12 but not 15 and happy to split half in the morning and half in the evening. It is just about the individual and choosing what’s best for them, it’s not always as you would assume. There’s not a magic number that is then too many, it depends on the young person.