It is not always clear what decisions you need to make and why you need to make this decision.

We have discussed how decisions are made to achieve a goal. Different professionals and providers will have expertise to help achieve different goals and outcomes.

For example, the specialist doctor is likely to be looking at symptom-specific issues regarding your child’s diagnosis, while your early intervention provider might focus on achieving functional goals.

Be clear about the decision you need to make and the reason you need to make the decision.

You might feel that you have to decide things quickly, perhaps even while you are talking with your child’s doctor for the first time. Unless it is a life-threatening situation, you usually have time to consider your options carefully. Talk to the doctor or service provider to understand the time you have to make the decision without disadvantaging your child.

Before you can make an informed choice, you will need to understand all the options available for the decision you are making.

Service providers usually only discuss the option they provide. For example, a cochlear implant clinic will talk to you about cochlear implantation for your child. They might assume that you have already explored other options that could be effective for your child.

Specific options may not be available in your area. But you do need to know what evidence-based options there are for your child’s hearing loss or other condition. Part of your decision-making will involve weighing up the advantages of the option versus the disadvantages such as travel for the out-of-area option.  

When we discussed cognitive biases, we mentioned that people tend to choose familiar options. They also tend to select the first acceptable option. It is better not to dismiss any options outright but take time to explore them all.

Whatever decision you make will not only affect your child. Each option will probably need time and commitment from you, and thus can have flow on effects for your home and work life.

Parents often indicate that they didn’t fully understand what was involved when they made a certain decision. They would probably make the same decision again, but it would have been helpful to be forewarned.

Understanding the short- and long-term benefits or advantages of each option is necessary when making an informed choice.

The best way to compare your options is to have statistics to guide your decision. For example: 9 out of 10 children achieve a goal for Option A. Whereas 7 out of 10 children achieve the same goal for Option B. If you want to achieve this goal, then Option A is more likely to achieve that result.

Unfortunately, statistics aren’t always available. And sometimes, the research evidence doesn’t point to a single best option. Each option will have some benefits and some risks. How you view these benefits and risks will be based on your personal and family values or preferences.

Statistics can sometimes be hard to understand. Don’t be afraid to ask questions about what the numbers mean for your child’s situation.

Understanding the short- and long-term risks or disadvantages of each option is helpful when making an informed choice. 

Statistics from high quality studies are needed to help you compare your options. In reality, these might not always be available for many of the decisions you make.

For example, surgery as a form of treatment for some conditions has obvious risks. But often the risks or disadvantages of an option are more subtle and play out in the long-term, such as possible mental health problems, and are not well-researched or discussed.  Some studies have found that parents don’t always want to know about possible negative outcomes of their preferred option. This could affect how informed you are when making the decision.

Uncertainties can come from two main areas:

• When babies are diagnosed early, the uncertainties can relate to the baby. It is hard to know from a young age, exactly what the needs of the baby might be as they develop.
• Uncertainties can also arise because there is just not enough good research to indicate a best approach.

For some conditions, such as hearing loss, doing nothing is not recommended as research shows that early diagnosis and intervention results in better outcomes.

But doing nothing is sometimes a valid option in some situations. For example, your doctor might ask if you want your baby to have genetic testing to find a possible genetic cause for their condition. Doing genetic testing is one option but doing nothing in this situation could be okay too. Discuss whether doing nothing is an option for you with the professional advising you.