As a supporter of someone with cancer, you may not realise how involved you can be, and how to advocate on behalf of the person facing cancer, if you choose to.
What does advocating mean?
Advocating can mean a number of different things:
- Making sure your voice or opinion is heard
- Influencing or causing something to change
- Asking for more information on things like side effects
- Asking for a second opinion
- Making sure a young person explores all their fertility options
- Finding ways to help a young person keep studying
One of the most important things you can do is help a young person advocate for themselves, depending on their age and maturity.
Being a patient can be disempowering for anyone. For young people, this can be made worse if they are left out of discussions, talked about, not listened to, or not given the chance to be involved in their care.
It can sometimes be easy to assume that a young person isn’t interested or capable of having a say in their treatment. Sometimes adults just want to protect young people from the more difficult decisions. But asking a young person if they want to be involved in making decisions or whether they need more information about a certain thing is an important part of helping them to feel more in control.
What if I’m not the parent?
While parents will tend to take a lead role as advocates for their children, partners, 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.
Finding information about cancer
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. We’ve also listed other sources of information on our resources page.
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.
Learning the language
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.
Knowing your rights
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.
If you’re the partner of a diagnosed person, the extent of your rights will again depend your age, the age of the diagnosed person and on the nature of your relationship. Ask your hospital or Redkite social worker for more information about ways to manage this.
Asking for help
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.