Making healthcare decisions for and with our children

In a blog for parents and guardians, Rufaro Ndokera, a children’s intensive care doctor who is also a mother, discusses things to consider when making decisions for children and young people.

Take-home points Take-home points: Making healthcare decisions for children is different from making decisions for yourself or another adult. It can be complex. But there are things that can help. There is a huge amount of information about children online which is not always accurate or trustworthy. Use trustworthy sources and be careful with what you read. As well as researching yourself, your clinician may be able to direct you to appropriate resources, parent support groups and advice. Take the time you need to make the decision you will be happy with. Consider using the BRAIN questions to help: What are the Benefits, Risks, Alternatives, what do I want (or what do I want for my child, what’s Important to and for them) and what if I do Nothing (or Not Now)? Engage your children in decision making if you can. They can do more than we know and will value the opportunity to have their opinions heard and take back some control.

I think I was asked to write this blog because I am a paediatrician (children’s doctor). But we all have multiple identities that affect how we think about making healthcare decisions. So, let’s start with an introduction that goes beyond what is written in my bio:

“Hello, I’m Faro. I am a doctor for critically unwell children. I am a wife and a mother who has had to navigate some tricky decisions for myself and my children with varying levels of support from my healthcare providers.”

As you read this, realise that I really understand that it is far from simple.  And yet we try to find a way through. Let’s go.

Why is making decisions for children different from making decisions for yourself or another adult?

As an intensive care doctor, I tend to think of healthcare decisions as being the very serious decisions that are made on an Intensive care unit (ITU). But the reality is that parents make multiple health-based decisions for their children every day or at least very regularly. Do I give this or that vitamin? Do I seek advice for this cough or cold? Then, of course, decisions increase in urgency and complexity for some. Some parents are considering treatment and operations for conditions that will affect their child long term. Others are making more short-term choices. They are all decisions, and they all fall to us, as parents, to make.

Making decisions for children is different because there is a lot to think about. Growth, development, and the impact on a child’s behaviour of a disease or treatment are issues that are less relevant to adults.

Who is involved in the decision is also different. You may be in a partnership where you have equal responsibility for your child’s health. Your views may be the same; but if not, things become more complicated.

At some point, the child or young person is likely to have views regarding their own health. Their voice also needs to be heard. Making decisions for, and alongside, a young person in their teen years comes with its own dynamics.

And if all that wasn’t enough, it’s just incredibly hard to make decisions that aren’t for you. But even though the decision isn’t for you, your personal experiences of making decisions will affect what you do for your child.

Practical matters

Consultations can sometimes be so busy, can’t they? Kids requiring attention, running around, wanting a snack, and getting into things they shouldn’t! Can you tell I’ve recently taken mine to outpatients? Staying focused, asking all your questions, taking in the answers, and making a plan under these circumstances can be really hard.

How can I approach decision making for my child?

We can’t overcome all these issues. Some of it is just about being aware of the challenges and being prepared for them.

Things to weigh up: the BRAIN questions

A useful tool when thinking about a specific decision in health care is to think BRAIN. This stands for What are the Benefits, Risks, Alternatives, what do I want (or what do I want for my child, what’s important to and for them) and what if I do Nothing? Sarah from Cochrane UK has created a beautiful and informative video about how she worked through a healthcare decision using this tool, which is included among other helpful resources in the blog Making health decisions: things that can help.

Get trustworthy information

The world of social media and online parenting groups means that there is “advice” everywhere. How good or evidence-based this advice is varies. It can sometimes be hard to tell what advice you can trust and what is merely someone’s opinion. Nonetheless, it is often the first thing we come across when we have a question. Understanding how to interpret what we read online is so important with regards to health. Sarah’s blog above also covers top tips for assessing if online information is credible or not. Give it a read.

With this in mind, consider; what information do I need to make this decision? Will a conversation with a clinician I trust be enough? You may want to see what research has been done, read information leaflets from your specialist, or seek advice from parent support groups.

Despite my many hats, I really try to firmly attach my ‘mum hat’ with my kids and trust what the clinician is telling me. I also have my non-medical husband who often provides a perspective that makes me think. However, with my ‘doctor hat’, I would rather a parent ask me 20 questions about a treatment strategy and leave the consultation satisfied, than follow my lead and wonder what else was on offer. Take the time you need to make the decision you will be happy with.

In child health, passage of time tells you a lot. If I observe that child for an hour, I’ll know if he is getting better, worse or staying the same. If I plan a review in 4 months, I can see how symptoms have progressed. If we wait a year, maybe something will change, affecting the balance of treatment or not. Time is an investigative tool. So, if you chose “nothing”, it doesn’t mean forever (just “do nothing now”). If you are hoping to come back to the decision, do express that to the clinician to keep that door open.

There is so much pressure to do the “right thing”. And so many people have an opinion. But the important thing with healthcare decisions is that you are doing the “right thing” for your child and your family.

Making healthcare decisions with your children

As children get older and have more experiences, they should be encouraged to engage with the health decisions that are made about them. They can do more than we know and will value the opportunity to take back some control. Many children are keen to understand their health and illness. Older children may want to discuss their health, illness and/or treatment with their clinician with parental support.  Younger children can make smaller decisions and still have input. They may want to decide if vitamins are liquid or gummy form, which arm the blood is taken from, or what food they want to try within a food challenge. Often, children are keen to be heard and this is something you, and your medical team can offer.

As doctors and parents, we probably underestimate how much children can take part in decisions. The Royal College of Paediatric and Child health (RCPCH) have a fantastic Children and Young People Engagement team which just goes to show how much children can achieve with empowerment and guidance. In this context, children and young people go beyond being active participants in their own health decisions. Their experiences, comments and thoughts contribute to national policies and processes. They really are amazing.

More information

Some resources that I recommend are:

 

Rufaro has nothing to disclose.



Making healthcare decisions for and with our children by Rufaro Ndokera

is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International

4 Comments on this post

  1. is there a Cochrane review associated with this article?

    Dawn Stacey / Reply
  2. Great article. I do want to feed back about the phrase, “I am a doctor for critically unwell children.” This is saying to me that you only get involved with the care of children who are very likely to die, and my next thought will be, “my child is very likely to die.” I don’t think that this feels helpful. I would feel much better about the phrase, “I am a doctor who specialises in the care of unwell children.” Otherwise, great info, thank you!

    Emma A / Reply
    • Hello Emma,

      Thank you for taking the time to read this, and for your feedback. As a paediatric intensive care doctor, “critically unwell children” is a professional description of the patients we look after. Its very interesting to hear how this phrase might be seen outside of our little speciality. I can really understand how this would be a very scary phrase to hear as a parent, often at a very scary time. I can reassure you, however, that outcomes in paediatric intensive care are generally good!

      Rufaro Ndokera / (in reply to Emma A) Reply

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