Communicating with children and young people who have a severe learning disability can be extremely challenging, especially when trying to involve them in choices and decisions about their health or social care.
The Me first principles of child and young person centred communication apply to most situations involving a child or young person, regardless of their age or ability. This includes those who have a cognitive impairment, those who can’t communicate and those where we don’t know how much they can understand.
Due to the challenges of involving these children and young people, they may not have learnt how to participate or be aware that this is an option. Over time both the child and the adults involved can develop habits of having more adult based conversations and it can be very difficult to change patterns of communication. As a result the child or young person can feel ignored, anxieties can develop about what’s happening and this may hinder treatment compliance. All adults present may strive to focus all intervention and discussion around the young person’s best interests, but this may not be explicit, consistent or effective from the young person’s point of view. It isn’t unusual for children and young people to have different opinions and desires from their parents or the professionals they are working with and it’s important for their views to be shared and discussed.
It may be impossible to gauge how much a person with severe learning disability and communication impairment understands but it is important that we make no assumptions about this. It may also seem impossible to involve them in the conversation if they are unable to communicate and have a very limited understanding. Here we discuss a few options available to help facilitate that child or young person to be more involved.
Getting “the basics” right
“Not about me, without me”
Facilitating child and young person centred communication can start by simply making sure that the young person is present for important conversations so that they can listen and have the opportunity to contribute. We can then indicate early that the young person will be involved by introducing ourselves to the young person first. Continuing to talk directly to the young person and repeating their name can help draw their attention to what’s being said and help demonstrate that the conversation is about them.
It can be useful to be explicit about this approach early on in conversation. State that you’re going to direct all conversation to the young person whilst being clear with parents that they will also be involved and that you are fully aware of the young person’s cognitive ability and communication difficulties. It may also be helpful to explain the benefits of child and young person centred communication so that everyone understands why we do it and encourage others to do the same.
Working as a team
Of course the contribution of the child or young person and their parents or carers is essential and they are likely to know the best way to include the child in conversation. Ask what methods of communication work and what they use at home. Do simple sentences, single words, pictures, objects, or signing work best? Which symbols or signs do they understand? Do they have a communication aid?
If there is a speech and language therapist involved, can they support any of your sessions or provide additional signs or symbols specific for your role? Close working with the multidisciplinary team is invaluable in facilitating communication and it is worth investing the time in joint sessions where available. It is important to encourage any communication aids and techniques to be used in each session. If this is prohibitively time consuming, it could be helpful to ask families or care workers to prepare in advance or arrive early to set up aids or to provide questions in advance for them to answer. This may help the young person feel more comfortable to discuss certain topics in a more familiar environment or when they have more time.
Methods of communication
There are various methods of communication that we can use alongside simple words, phrases and signing. These include using visual aids, images, and symbols; cues and gestures; touch, and demonstration. For example for hydrotherapy, alongside using verbal prompts and signing, show them the pool or a picture or symbol for it, put some water or a swimming costume on their hand, or gesture swimming.
For those who cannot reliably access these methods, can they communicate with smiles, facial expressions or vocal sounds? If they are not able to do any of these things do family members know when they are happy or unhappy and how this is communicated? Can this be used more to help facilitate communication?
Even without reliable methods of communication available, the principles of child and young person communication can still be applied in various ways. In my own practice I find it helpful to ask lots of questions to help initiate conversations about the child or young person such as “I wonder if Charlie would prefer…..” “I wonder what Charlie thinks about…..”. This can help to ensure the young person’s preferences are included and can generate useful conversation with families about how to involve the young person more at home.
The Importance of time
Regardless of their understanding, it is important that we speak slowly and clearly alongside using appropriate aids. It is also essential that we provide time for people with learning disabilities to take in and process what’s been heard and then provide time for them to prepare their response and to respond. This simple act can be easier said than done, but the benefit of this time should not be underestimated.
Consistency is key
Working closely with family, education staff and the MDT to ensure these methods of communication are consistent may also help facilitate communication over time. Championing this information to make sure everyone knows the best methods of communication can help make good practice consistent. A hospital or communication passport is a useful tool to facilitate this by providing easily accessible useful information, tips and hints for all involved. An example of this is here.
Working with someone who is nonverbal or who has a communication impairment or learning disability adds to the challenge of effective, person centred communication. It is important that we don’t make assumptions about their level of understanding and make efforts to include them in all conversations about themselves. Ask them or their family what works, use what works and encourage everyone involved to be consistent with this. Make time for these children and young people to listen, process and respond. Although this can feel time consuming, this can reap rewards of building rapport, improving patient and staff experience and outcomes of the intervention. For more information please check out this great resource here or look at our website for more useful tips and resources: www.mefirst.org.uk
Paediatric Physiotherapist and Me first Practice Facilitator