Advocacy is about standing up for someone’s rights, needs and interests. An advocate is a person who speaks on behalf of someone else to make sure their needs are met.
As a parent, you may have developed advocacy skills whilst your child was in hospital. Or maybe you started after they were discharged, as both of you adjusted to daily life. Perhaps you’re still unsure how and when to advocate.
Advocacy is a skill that takes time to learn, and some parents find it challenging. Some choose to get support from other people (family member, friend, professional advocate) to help advocate for their child. Advocacy starts with recognising that your child may need extra support to have their needs met. If you’re worried about your child’s health, treatment, or feel that they are being denied their rights, it’s important to take action or to ask someone else to support you to advocate for them.
Doctors and health professionals may be experts in your child’s medical condition, but you are the expert in your child. If decisions are being made about your child, you can make sure they are in their best interests.
Your advocacy may be needed at different points in their healthcare journey. This may be when symptoms first appear, during diagnosis and treatment, through recovery, key transitions, and while seeking new services. By advocating, you ensure your child gets the care and support they need.
Here are 7 tips for how to effectively advocate for your child
- Understand your child’s rights.
You can learn more about your child’s rights online, with lots of resources from reputable websites such as Children’s Health Queensland, Qld Paediatric Sepsis Program, National Disability Insurance Agency or National Disability Advocacy Program. - Be prepared for meetings and appointments.
Caring for a sick child can be incredibly stressful, and we know that stress affects our ability to clearly remember and understand important information. To prepare, write down questions and information before and after medical and therapy reviews. This will help you feel more confident when advocating for your child’s needs. - Research and learn.
Healthcare systems can be complex and overwhelming. Take the time to learn about your child’s diagnosis by asking healthcare professionals and other parents for insights. The more informed you are, the more you can confidently explain your child’s needs to others. You will also be able to speak up if you don’t agree that a decision or plan is best meeting their needs. - Maintain open communication with your child’s care team.
Regular meetings with your child’s doctors and health professionals helps build a strong relationship with them. These interactions provide opportunities to ask questions and discuss your child’s condition, treatment and overall care plan. - Stay calm and focused.
Advocating for your child can create strong emotions. Focus on solutions, rely on facts, ask thoughtful questions and make suggestions. If you are finding that you are becoming quite emotional, consider taking a break or simply take a few slow, deep breaths to regain clarity. - Seek support from others.
Connecting with other parents who have faced similar challenges can provide valuable advice and emotional support. In addition, professional advocates in the community and social workers within the hospital system can assist. You can find community advocacy services by contacting your local community centre, council or disability service. - Look after yourself.
It is easy to neglect your own needs when caring for your child. Looking after yourself is essential to meet the ongoing demands of caring for and advocating for your child. Practising self-care helps you stay present, focused and fully engaged in advocating for your child’s needs.
Useful websites
Health Consumers Queensland www.hcg.org.au are an organisation that supports Queensland consumers and health services to partner for quality and safe consumer-centred health care.