As a children’s hospice, we welcome a variety of children of differing ages, abilities and living with a range of conditions through our doors. Some of the children that visit us for respite care are unable to verbally communicate and may have limited movement, which may make even reaching for an object impossible. This brings a challenge to our clinical team because they still need to communicate with the children, from understanding their pain to asking what they might like to do that day.
As with any caregiver, our clinical team all have a broad range of specialisms and experience. Some of our nurses have trained in adult care, some in paediatrics and some as learning disability nurses, then we have our care team who help with looking after the children on a day-to-day basis and the doctors who work with the children on long term care plans. There are also other staff who support the clinical side of the hospice who have different training backgrounds.
One of the most important aspects of working here and being able to communicate with the children who come here is learning and developing effective nonverbal communication techniques. Some of the staff learn this in their clinical training before they start at Helen & Douglas House and then develop it working with the children. Others may have experience in using non-verbal communication tools, but then working with each child is different so they must adapt it depending on who they are caring for that day.
Communication techniques for children
When we caught up with some of the nurses and care team they told us about how they communicate with the children who are unable to speak. One of the most important aspects of this is getting to know the individual child and learning the individual signs they personally use. For example, if a particular child screams screws up their hand when they are unhappy, the team learn this sign for that child and learn how to calm them down. For another child, this action could be expressing happiness. They learn these signs by talking to their family, reading their medical notes, talking to other clinical team members who have looked after them and learning what a child does over time in order to provide individualised care, tailored to the individual need.
Other signs the children use to communicate outside of talking could be:
- Moving their eyes or eye pointing
- Physical cues for feelings/moods
The team develop tools to communicate, for example, using a copycat game, where the child watches and then copies them in response. With any technique, there must be a lot of flexibility with the care staff to understand different situations. There are also a number of other methods they use to work out effectively what a child is trying to communicate; something plenty of parents of babies and children can probably relate to!
Mum Shailza comes to the hospice with her two boys’ Stanley and Riley and she told us; ‘My boys cannot talk but they communicate to me with their eyes. If I say Riley I love you, his eyes light up a little more. I know what they need or what is going on from their eyes.’
Other communication techniques
As well as the general communication techniques above, there are other techniques that have been learnt and developed by the team such as:
Intensive Interaction is used by some of the nurses and care team. It is an approach to communicating using the pre-speech fundamentals of communication to children (and adults) who have severe learning disabilities or are at an early stage of their communication development. This is particularly important for the children who come to Helen & Douglas House so that together the clinical team, the family and the child can develop an understanding of conversational eye contacts and facial expressions, taking turns in exchanges of behaviours and furthering vocalisations toward the threshold of speech. Last week was International Intensive Interaction week (14-18th October) and you find out more about it at intensiveinteraction.org.
Makaton sign language is mostly delivered by trained individuals such as our learning disability nurses Rhian, Sabine and Rebecca to name a few. It is a simpler form of sign language that uses symbols, signs and speech to enable people to communicate. It can also be delivered with picture communication tools called PEC’s where children point using hands or eyes to highlight the item they want or choose. Find out more about it at makaton.org.
Smiling to communicate
For some of the children who come to Helen & Douglas House, a simple smile may be the only way they can communicate. Each and every one of their smiles’ is unique and tells a different story. According to science, when we smile the muscles in our face stimulate our brain’s reward mechanisms (in the same way that eating chocolate brings us pleasure). A result of this can often be catching, producing more smiles with other people. Smiling can also reduce stress and generate positive emotions which is why it is so important within our hospice and a smile can often be found.
For some children, even smiling can be hard or take a long time. Sienna who is aged eight, from Wootton, comes for regular respite care at Helen & Douglas House. Her mum, Kay, told us how small signs from Sienna help her understand how she is feeling;
‘I’ll let you in on a secret, being Mum to Sienna has its heart breaking moments but I have also come to see it as a privilege because I can also experience immense joy in her presence. Her beautiful almond blue eyes look into mine as if trying to understand this world she lives in. Her little body leans in closer to mine for a cuddle when I hold her and despite refusing to hold anything else she wraps her little fingers around mine with a firm grip. Her smiles are so precious because she was three before she smiled for the first time.’
Whilst every child is different, we have worked hard at the hospice to create an environment that many of them can enjoy. From Finley playing with lots of glitter, which makes him smile, to installing a swing for Riley to enjoy. Each of us has our own pleasures and we work hard to ensure that when a child is staying with us during a respite visit, they have the tools they need to ensure they are happy and comfortable and can communicate this to us.
How to recognise pain with non-verbal communication
As well as general communication tools, the clinical team also need to understand when the children are in pain. This is when other techniques are used by our doctors. One of our doctors, Dr Christine, told us how they use validated scales to help with pain or a pain checklist.
The FLACC scale (Face, Legs, Activity, Cry, and Consolability) is used to assess pain in children. This is usually used for children between two months and seven years, or for those who are unable to communicate pain. It is scored from 0-10 with 0 representing no pain.
The scales and checklists are used when talking to parents who know what non-verbal signs mean, and the doctors also work with families to develop these techniques over time and constantly check they are still effective. This technique works most of the time, but with rare conditions, which can be quite common with the children who come to the hospice, these scales may have to be amended and individualised.
Every donation you make enables us to continue to provide care to those who come to the hospice and for our clinical team to be able to develop techniques to effectively communicate with the children and their families.
‘As a Mum to a special child you get down to the basics of what important for your child and they are; happiness, comfort and connection. Helen & Douglas House staff know this feeling too and that’s why they do what they do. Please support them so they can support Mums and Dads like us to continue to have the resources to be the best parents we can be.’ Kay, Sienna’s mum.