Being an advocate for your child can be a hard role to navigate.
Parent / carer
When treatment ends
Advocating has a few different meanings. It can be as simple as making sure your voice or opinion is heard. It can also mean making changes. This might involve something as simple as asking for more information about a side effect or as important as deciding to ask for a second opinion.
How do you get started? Here are some steps you can take to become a patient advocate.
An important skill for an advocate is to make sure you have the right information, which is not always as simple as going online. The internet can be a good resource, but it’s important to be careful about which sources you trust.
Start with your medical team – they will be an important source of information and support, and will also be able to recommend other information sources like the Cancer Council, which has online resources and a helpline you can call to ask questions.
Advocating works best when you listen and understand what others are trying to say. This can be challenging, especially if you don’t agree or want to accept their opinion.
But by listening, you’ll learn more about their perspective and may even find a new way to look at an issue. Building a mutual understanding this way can lead to a stronger relationship, with a shared goal about your child’s health.
The ability and willingness to ask questions is a great skill in supporting a cancer patient. While doctors or nurses may seem busy, you have the right to ask them to answer any questions you have.
It’s a good idea to ask your treating team to make a time to talk to you – your hospital social worker can help you with this. Write a list of questions before you meet with them, and remember that if you think of more afterwards, you can always go back and ask.
Cancer seems to come with a whole different language. Don’t be afraid to ask someone to explain what they just said in words or phrases that you can understand. Often medical staff are so used to talking about cancer, they don’t even realise that what they’re saying might not make sense to someone else.
Parents or legal guardians of children under 18 have rights within the healthcare system. Two important rights to remember are:
You have the right to ask for information and the right to make decisions about your child’s treatment
You have the right to ask to talk to another doctor or get a second opinion
Many hospitals have information resources about health rights and responsibilities. Once your child is over the age of 16, their right to be involved in and make decisions about their health increases.
It’s clearer when your child is aged 18 or over. Once over 18, every decision about treatment is legally up to the young person.
This is not to say that parents can’t be involved. If there are conflicts or tensions about decision making, talking with a social worker or a member of the Redkite support team can be helpful.
Asking for help is a great skill to have. Some people worry it means they aren’t coping, but what it really means is that you’re actively trying to find solutions to problems.
If you’re not sure who to talk to about a particular topic, ask your social worker or contact us.
While parents will tend to take a lead role as advocates for their children, other people like carers, siblings and grandparents can also act as advocates.
Start by talking to the young person and the person who is their main support, to see how you could help. Advocating could be as simple as encouraging and supporting their choices, or might involve things like seeking more information on their behalf or even acting as the contact point with medical staff or family members.
When acting as an advocate, it’s a good idea to check in with people occasionally to make sure your actions are still useful, and to find out if they need any other support.
What other parents say about advocating
Being an advocate for your child can be a hard role to navigate. Some parents have shared their experiences with being their child’s advocate and why it’s so important:
Tip One – You are your child’s advocate
‘You are your child’s advocate. Although you may initially feel you don’t want to be ‘that annoying parent’, sometimes you need to be. It’s often more important to speak up when you feel something is not right, and speak up again and again if you’re not heard the first, second, third time.’
Tip Two – You’re always the advocate
‘You need to be an advocate for your child at all times in the hospital. If it doesn’t feel right for you, ask questions, get more information, ask for another opinion or see another blood collector.’
Tip Three – Trust your gut
‘You know your child best and your gut instinct. If you suspect something is wrong or you are not sure, follow it up.’
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