We recently had a 5-day hospital stay. It was the first one in 18 months and was at our local hospital, some 300kms from our liver specialists in Sydney.
The experience reminded me how important it is to be a strong advocate for your child, not only to ensure that they receive great care but also that they are comfortable and confident in the hospital setting. After all, hospital visits, bloods and invasive procedures are a fact of life for our Liver Kids.
It’s vitally important to remember that the medical and nursing teams are working for the best outcome for your child. However, different hospitals and teams might have ways of doing things that won’t be familiar to you and may make your child upset or uncomfortable. It’s absolutely OK to raise this with the hospital team and ask them to do things differently based on your experience of what works for you to keep your child calm and comfortable.
Key Points when Advocating for Your Child
Understand the Details of Your Child’s Condition and Medical History
The first medical and nursing team members you come across will probably not be familiar with your child and their history. You need to be able to provide a clear summary of their history including details of all medication. Keep a record in your phone so you can easily refer to it. If you are in a regional hospital rather than one of the Liver Centres, reinforce that you and your child are experienced in a hospital environment and expect to be involved in decision making about your child’s care.
If you are not sure why a course of treatment has been suggested, ask the doctor looking after your child’s care for a full explanation and ensure you understand before you consent. Results of blood tests and procedures such as ultrasound and x-ray should be explained to you in the context of the treatment plan.
Involve Your Child
Even when they are a tiny baby, talk to your child about what is going on and involve them (at an appropriate level) in the discussions about their condition and treatment. As they grow up, they will need to take on responsibility for their ongoing care and should be confident that they have the right to ask questions and understand what is happening to them.
Know What Works for You
Different hospitals may have different ways of doing standard procedures. As an example, if your child is more comfortable staying in their bed for a cannula insertion but the standard is to go to a treatment room, you can request to have the procedure done at the bedside by explaining that your child will be happier and more compliant, with less disturbance. Similarly, you may know which veins are best and which locations will mean your child can still use their hands for drawing, reading, writing and gaming.
There are plenty of resources online to help you build confidence to advocate in the healthcare and hospital setting. A good place to start is with Liver Kids friend, Dr Angela Mackenzie through her website http://www.everybodystaycalm.com/resources.html
Fortunately, by making sure we played an active part in her care team, despite daily blood tests and 3 cannula insertions, my daughter’s assessment of the worst aspect of her hospital stay was that it was ‘very boring being stuck in bed’. We thought that was a pretty good outcome!