Communicating concern: “Worried they are getting worse?” by NSW Health

I came across this announcement a few weeks ago and made a note to write a post imagining how this policy might work in practice. I was interested in what the interactional challenges and implications might be.

Then one of my children became unwell and I ended up experiencing it. While this was definitely an unwanted user experience, it did provide some insight into how it was used in practice.

With the little one very much on the mend now, let’s take a look at this new policy from NSW Health. The Worried they are getting worse? policy has recently started roll out with the goal of being practice in all public hospitals by October 2025. It’s based on research that shows that caregiver concern about deterioration of a child can indicate an increased risk of critical illness. Caregivers know their kids best, so are able to more accurately assess whether a child is not their normal selves. A caregiver is also required to stay with a child (at least in the emergency department) and so would be able to monitor more closely for changes. It’s a seemingly simple additional question to ask and could allow for earlier review and intervention.

We were in the ED twice - once for a few hours and then once for 12+ hours. We were then in the kids ward for another 20 hours or so followed by hospital in the home. There are likely times that I was not listening for this question or that I was too tired or stressed to have taken note of the question beyond answering it in the moment. That said, my recollection is that I was asked this maybe four or five times in our 12+ hour stay in the ED, once or twice in the ward and then once on a call to the hospital in the home team. I also raised a concern about deterioration outside of these questions and felt comfortable doing so.

The question as it’s designed in the advice is good - it doesn’t assume a “no” response, which a question like “any concerns” can do. When asked in practice, I recall being asked in the advised format “Are you worried they are getting worse?” as well as something like “Is she worse than she was when you came in?” and “Has she got worse in the last hour?”. None of these are particularly problematic in terms of whether they might negatively influence a caregiver’s response and I don’t recall being asked the question in a way that switched my conversation analyst brain on.

Beyond the question, however, there were some aspects which could be related to challenges in integrating this policy into practice.

On one occasion I was asked the question followed by “it’s something we have to ask now”. This hints at the healthcare provider’s own learning around integration into their practice - when and how might they ask such a question and might a caregiver be concerned or confused about being asked the question. There’s a chance this could be interpreted as minimising the question itself. Since I knew about the policy, I just said “of course, it’s so great”.

On another occasion after responding that I was worried, I overheard the review of my child being framed as “parental concern”. While this is true, there is the potential for this framing to become negative - an anxious parent and/or a clinical review that is otherwise not supported by clinical signs. Might escalation for clinical review seem less important if the reason for the review is assigned to the parents?

What does this mean for implementation? While I didn’t experience problematic question design, ensuring that the question is asked in a way that does not assume a “no” or in some discourage the caregiver from expressing their concerns is vital. As is ensuring it is asked with sufficient frequency along with letting caregivers know they can raise concerns outside of when the child is being reviewed. Healthcare providers need to also value caregiver concern to ensure that it is understood as an indicator of potential deterioration and critical illness. Integration of communication strategies can be difficult, but this policy is well suited to success as the question can be asked within specific circumstances of observations and because caregivers appreciate being proactively asked to raise concerns.