Communication is vitally important in so much we do as clinicians. Without good communication, we can’t hope to get a decent history, properly examine our patient, explain what we think is going on or ensure appropriate management.
(Editors note: After hearing Liz Herrievens talk at DFTB19, we just had to learn more)
People with learning disabilities, autism and other additional needs often have difficulties with communication. Adults and children (from 4 years old) with learning disabilities are three times more likely to die from something which should be amenable to treatment compared to those without a learning disability. I find this staggering. Of course, there are many reasons for this, including comorbidities, recognition of illness, and access to healthcare, but communication challenges have a huge role. It’s not just a challenge for the patient but also a challenge that we, as clinicians, must do our best to overcome. We think nothing of getting an interpreter to help us communicate with people who speak a different language from ours. Shouldn’t we be thinking about communicating similarly with people with additional needs?
My daughter, Amy, has Down syndrome and autism. She has taught me so much over the years, particularly about communication. When asked to talk at DFTB19 on this topic, I knew I didn’t have long to speak and wanted to get the right points across. But what are the right points? I spent a morning with Amy, some of her friends, and some other families I know who have children with additional needs, trying to find out. We chatted about what did and didn’t work for our children when accessing healthcare, particularly visiting the ED. We also chatted about farting, made collages with stickers and ate chocolate. Lots of chocolate.
Speak to me, not just my Mum and Dad
This was a really common theme. When faced with something we think will be difficult, it’s natural to try to avoid doing it. So, instead of speaking to the child with communication difficulties, we speak to their parent. And yes, the parent can give us some vital information, but the child is our patient and deserves our attempts at communication. We might need to ask the parent how best to communicate with their child, and that’s ok. In addition to our verbal communication, we must watch our non-verbal communication. Eye contact can be very reassuring to some children but very uncomfortable to others, particularly those with autism. Is our body language appropriate? Children with LD, and their families, are all too used to being stared at and treated differently to others. Let’s not fall into that trap. See the child first and their additional needs second.
Listen to me
As well as speaking to our patients, we also need to listen to them. We might need a quieter room or more time. We might need help from the child’s parents if their speech is unclear, or we might need support with sign language or the use of symbols if we’re unfamiliar with them. We must also watch for our patient’s non-verbal communication. It’s worth asking their parents to help us with this, too. How does their child show they’re in pain? Does their child appear to be comfortable? Is the noise they are making a sign they are happy or a sign of distress? It’s ok to admit what you don’t know – no one can know everything, and admitting this and asking for help will get a better outcome for your patient than trying to guess.
Watch out for diagnostic overshadowing. This happens when a person who already has a diagnosis in place presents with symptoms or signs that a clinician puts down to that pre-existing diagnosis without looking for another possible cause. So, for example, a patient with autism who seems anxious and agitated, pacing or flapping hands, might be assumed to “just” have autism without the clinician looking for the pain or discomfort which might be making him anxious or agitated.
Help me focus
Some children have difficulty keeping their minds focused. We can help by discovering what interests them and making that part of the history or examination. We can also help by keeping the rest of the room quiet and uncluttered, with fewer distractions. We might need to break up our clinical assessment with chunks of active play. Sensory or fidget toys can help by giving something to keep the child engaged. These can also be useful in children with sensory processing problems or autism. In autism, where an overload of sensations, such as in a new environment, can be overwhelming, children may try to deal with their anxiety by channelling it into repetitive movements, such as flapping their hands or pulling their hair. They may also find using fidget toys helpful. Don’t try and stop these repetitive behaviours, which are known as “stimming” (unless the parents are trying to suppress a particular action as part of a behavioural programme), as this might be what is helping the child cope with being in hospital.
Routine and structure can be very comforting to some children. A simple “Now and Next” board can help show the child that, although now is the time for feeling their tummy, next will be a time to play.
Help me understand
Some children with additional needs can understand much more of the information we communicate to them if we help them to do so. This might mean something as simple as keeping the room quiet, speaking slowly and clearly, avoiding jargon and making sure the child can see your face and mouth as you speak. We need to watch the words we use. It’s so easy to slip into the language taught in medical or nursing school – that secretive language of long technical words that makes us sound clever. We also need to avoid metaphors – many children are literal thinkers and unable to follow abstract thinking. I remember an unforgettable restaurant experience when my son, who wouldn’t sit still, stripped off at the table when I asked if he had ants in his pants…
This article from the BMJ, written by a young lady with Down syndrome, offers more insights into the difficulties caused by healthcare professionals’ language.
Use the child’s strengths in front of you to help them understand. Children with Down syndrome, for example, have a relative strength as visual learners. They are far more likely to remember information presented to them in a visual format than information they hear. Use pictures, symbols, social stories or sign language (such as Makaton).
For more on the learning profile and development of children with Down syndrome, plus a fab selection of health-related information, see https://www.dsmig.org.uk/information-resources/by-topic/development/
Give me time to reply
We need to be patient when communicating with children with additional needs. Children with Down syndrome, in particular, have a significant sensory processing delay. It can take them 7 or 8 seconds to process and understand your words and formulate a reply. Don’t rush them; those few extra seconds can feel like a lifetime and can also feel a little unnatural, but it’s worth waiting for a reply.
I can understand more than you think
Most children with a learning disability don’t have a global developmental delay but areas that are more challenging and areas that are less challenging for them. If communication is a challenge, it doesn’t necessarily follow that understanding is challenging, and vice versa. It is important to try to gauge the level of understanding of your patients so you can help them help you. Don’t talk over or around someone unable to speak to you – they may well be able to understand you, and just because they can’t reply it doesn’t mean you shouldn’t try to communicate with them. If someone appears to be able to communicate well, check their understanding, too.
Help me to see
Of course, some children have other additional needs that we need to consider. Children with sight problems, for example, need our help in specific ways. We need to ensure that any visual materials we use, such as symbols, pictures, social stories, and distraction resources, are appropriate – uncluttered, simple images work best, with a big contrast between light and dark and large, clear text. Avoid shiny materials, as glare can be a problem. Ensure the room you are in is well-lit. Don’t stand in front of windows or lights. Explain clearly what you will do before approaching or touching the child and approach from the front, particularly if the child has narrow visual fields.
Don’t assume
Any blog on communication will try to give you tips, and I’ve fallen into the same trap. Those tips cannot be generalisable. They are only useful to you as a clinician if relevant to the child or young person in front of you. All children and young people are different, and that applies to those with a learning disability or autism, too. Don’t assume anything. Find out what works for your patient. For example, eye contact and gestures can be invaluable for some children, such as those with hearing impairment or Down syndrome, but very uncomfortable for others, such as those with social communication difficulties or autism. Use the information available – previous letters or notes, hospital passports or “All About Me” books – and ask parents or carers to help you fill in the gaps. And please make a note of what works and what doesn’t to save parents from going over old ground next time.
Take your time, tailor your communication to the child in front of you, and you’ll have a much better chance of getting the best possible outcome for your patient.
It’s also well worth watching Robyn and Tara from DFTB18.
More info and resources
Free downloadable visual resources, including parts of the body and Now/Next boards:
https://www.educateautism.com/free-materials-and-downloads.html
Makaton:
Some signs and symbols for health professionals:
https://www.makaton.org/shop/shopping/freeDownloadDetails/Lanyard-cards
Can your department take the LD Pledge?
https://www.makaton.org/shop/shopping/freeDownloadDetails/LDPledge
Social stories:
https://www.autism.org.uk/about/strategies/social-stories-comic-strips.aspx
GMC
https://www.gmc-uk.org/learningdisabilities/200.aspx#206
RCEMlearning
https://www.rcemlearning.co.uk/foamed/learning-difficulties-in-the-ed/
How we’re using communication tools in Hull:
https://www.hey.nhs.uk/patients-and-visitors/children-learning-disabilities
[/toggle]