Children with complex needs (like autism learning disabilities or multiple health issues) are at higher risk of serious illness, yet, they can be challenging to assess. Children with complex needs are five times more likely than the rest of the population to die from a treatable condition.
To help do the best possible assessment, the TEACH mnemonic can be used when assessing children with complex needs.
Allow more time for these consultations. It may take longer to take a history. The nature of the information may be more complex and it might be a slower process if the patient has communication difficulties. The examination can be more challenging, too. For this, you need to be patient and allow more time.
Your patient may have sensory processing needs. Some things in the hospital environment can make the experience worse. Flashing lights, beeping noises, and loud voices are all stressful. Ask the patient and family what will work best. Perhaps you have somewhere more suitable for them to wait (rather than the main waiting room)?
Ask if there’s something that will make them feel more secure. They may have a favourite toy or a favourite blanket. Try and ensure you have this at hand to make them feel more secure.
Don’t make assumptions or judgements about quality of life based on the one time you see them. You might be seeing them at their very worst. You may never see them, or get to know them, at their very best. Now is not the time to make a judgement about their quality of life.
Be mindful of diagnostic overshadowing when a child presents to hospital and has a pre-existing condition. In this group of patients, we have a tendency to put all the presenting problems down to that one condition. Their presentation may be unrelated to their complex needs. Remember to look beyond the obvious, and think more broadly about other potential diagnoses.
Bear in mind that this group of patients may have atypical symptoms. A child with a neuromuscular disorder, might not be able to mount an increased respiratory rate in response to a chest infection, or might not be able to mount a pyrexia when they have an infection. Not everything presents ‘typically’ in these young people.
Keep an open mind with a view to pain assessment. It is often underestimated in children with complex needs. Just because a child can’t verbalise, that doesn’t mean they are not in pain. Use a pain assessment tool that takes into account their developmental stage, and parental perception of pain, as well as any information you can get from the patient.
The most important lesson is to include the family, and to respect the parents. Parents of children with complex needs know their child much better than you do. If there’s something you’re unsure about, it’s fine to acknowledge that and to ask the parents what they think is going on. They know all the ins and outs of the child’s medical issues, medications, and normal behaviour.
Families of children with complex needs have hospital appointments all the time. They do not want to spend extra time in an Emergency Department. They have come to ED because they are worried. Respect that decision, and take their concerns seriously.
When you talk to a young person with complex needs, speak slowly, speak clearly, and allow time for them to respond.
Ask the family (and the young person) what the best way is to communicate with them. Remember about non-verbal communication – how you’re using your body language gestures and what kind of methods of communication the young person is using themselves.
Look at other communication aids that they are using. Do they use any adaptive forms of communication? Would drawing pictures be helpful? Would it be beneficial to give them a resource explaining what will happen in the department that’s easy to read and easy to understand? Is there a picture book with simple explanations about the types of procedure they’re going to have, or what the process is going to be?
If you don’t have any of these available, you can still use body language and gestures to enhance communication. Pointing to a body part when you’re talking about it is very helpful. You are supporting verbal communication with visuals.
What help does the patient need from you? What help do you need to understand this patient and implement the right management plan?
Parents are your friends here. They know all about this person. There may be some soft signs that aren’t the usual things that come up when you’re taking the history. It might be that they are not eating their favourite meal, or not watching the television program that they normally watch. These subtle signs can be really important. That’s why we have to ask the parents what their worries are.
If the child has a hospital passport, this is a great source of information. It will give you some tips on how best to communicate with the child as well as the child’s normal functioning. It will also list any ongoing medical issues and the medications that the child takes.
If you’re lucky enough to have a learning disability nurse in your hospital then give them a call. They will likely be able to help advise and they may well know the patient.
Using the TEACH mnemonic is a great way to remind yourself of everything you need to remember to get the best consultation possible for young people with complex needs.