Understanding more about the children in your care.
Supporting MSI children in hospital
Coming into hospital can be a daunting experience for any child. For children who have multi-sensory impairments (MSI) the challenges are even greater. They can easily become frightened and disorientated in unfamiliar surroundings because they have little or no sight and hearing, often combined with other disabilities.
However, there is a lot that can be done to make the child’s stay in your care much more pleasant and comfortable. For example, finding out how they like to communicate will help to build up their trust and confidence.
What this document covers:
- What multi-sensory impairment means.
- What MSI children need.
- Causes of MSI.
- How it affects the everyday lives of children and families.
- Practical tips and ideas to help make the hospital stay less stressful.
- Resources for staff who would like to know more.
The production of this page was made possible by donations kindly given for the Candis Big Give appeal.
What does multi-sensory-impairment mean?
Children who have sight and hearing impairments are said to be deafblind. This combination of impairments actually causes additional difficulties – such as problems with balance and spatial awareness – which is why we talk of multi-sensory impairment (MSI).
Our experience of the world, our ‘reality’, comes through our senses
Sight and hearing are our distance senses
Sight and hearing are often called the distance senses because they give us information about what’s happening around us.
If we have hearing and visual impairments our experience of the world is different – and in particular our ability to absorb incidental information and to communicate is affected.
Our close senses
Touch, taste and balance are close senses, giving information only about what is happening now, within arm’s reach.
Smell gives some distance information, but it’s much less useful to us than sight and hearing. Sight and hearing provide most of the information we need to learn and function.
Very young babies mainly use touch, taste and smell, but even from birth, they get some information from sight and hearing. Over time, they develop visual and auditory skills that enable them to get better-quality information and use it better.
How the senses work together
When one distance sense is impaired, information from the other can be used to compensate to some degree – for example, a deaf person lip-reading. People with single sensory impairments can also use their undamaged senses to keep in contact with the world around them.
Children who are deafblind with multi-sensory-impairments (MSI), however, cannot use either of the distance senses to compensate. They are also likely to have impairments of other senses, as well as sight and hearing. They may have poor balance, limited movement, under-sensitive or over-sensitive touch or an impaired sense of smell.
What do MSI children need?
Children with multi-sensory-impairment need to get as much information as possible from their residual sight and hearing and from their other senses – by using their senses together. For many children, touch can provide a means of learning about the world and a means of communicating.
Some children with MSI become very skilled in using the sense of smell, for example, and use it to identify people. Some come to recognise movement around them because of something as subtle as changes in air pressure on their skin.
Facts about multi-sensory impairment
- Children with multi-sensory impairment have impairments of both sight and hearing. Many children also face other challenges, such as medical conditions or physical disabilities.
- A very small number of children with MSI are totally blind and deaf, but most have some useful vision and/or hearing. It may not be clear at first how well a child will be able to see or hear, especially if they have other problems.
- Multi-sensory impairment is a very rare disability, particularly in children. There are an estimated 4,200 children with MSI in the United Kingdom.
- A huge range of conditions can cause multi-sensory impairment. There’s no single or main cause. Many of the conditions causing MSI are extremely rare and many professionals will never have come across a child with this particular diagnosis before.
- Every child has different, individual needs, and children with the same diagnosis vary enormously in their abilities and character.
- Some conditions, both congenital and acquired, may change over time regarding how well children see or hear, or in their health or general development. Some conditions causing MSI also limit life expectancy.
- Some children acquire MSI after an illness or injury – like an accident or meningitis. Their families may be caught between joy at their child’s survival and grief at the changes in their child’s abilities and their hopes for the future.
Causes of multi-sensory-impairment
- Aicardi syndrome
- Alport syndrome
- Alström syndrome
- Apert’s syndrome
- Bardet-Biedel syndrome
- Batten Disease
- Cerebral Palsy
- CHARGE syndrome
- Chromosome 18
- Cockayne syndrome
- Cogan syndrome
- Congenital rubella syndrome
- Cornelia de Lange syndrome
- Crouzon syndrome
- Cri du chat syndrome
- Cytomegalovirus (CMV)
- Dandy-Walker syndrome
- DIDMOAD: Wolfram syndrome
- Down syndrome
- Foetal alcohol syndrome
- Flynn Aird syndrome
- Friedreich’s ataxia
- Goldenhar syndrome
- Kearns-Sayre syndrome
- Kniest dysplasia
- Marfan syndrome
- Marshall-Smith syndrome
- Meningitis: viral and bacterial
- Metachromatic leukodystrophy
- Moebius syndrome
- Neurofibromatosis Type 2
- Norrie disease
- Pallister-Killian mosaic syndrome
- Peroxisomal disorders – Refsum, Zellweger, infantile adrenoleukodystrophy
- Pfeiffer syndrome
- Pierre-Robin syndrome
- Spino Cerebellar degeneration
- Stickler syndrome
- Sturge-Weber syndrome
- Treacher Collins syndrome
- Trisomy 13: (Patau syndrome)
- Usher syndrome
- Waardenburg syndrome
- Wildervanck syndrome
- Wolf-Hirschhorn syndrome
How does being multi-sensory impaired affect children?
We normally get most of our information about the world around us through sight and hearing – so multi-sensory impairment makes a significant difference to children’s learning and development.
Poor sight and hearing effectively restrict experience to the here-and-now – what is happening at this moment, within arm’s reach. Children may not realise that the wider world exists, or they may find it so confusing and threatening that they ignore it as far as possible.
What we know, and how we help
Children who are MSI are acutely deprived of sensory information
Poor sight and hearing can be accompanied by difficulties with other senses – touch, taste, smell, balance, and the awareness of pressure, temperature and pain. Children with MSI may be very slow to learn to use their residual senses because it’s much harder to learn to understand and use sensory information that is partial or distorted.
Relationships with others often take a longer time to develop
But children with MSI do develop close relationships, especially with their family, like any other child. Initially, children with MSI may seem unresponsive to staff, because they don’t see or hear the smiles, looks and speech most children respond to.
Children often take longer to realise that their actions affect what happens to them
This means that they are slower to learn to communicate. As they develop, they may use objects, gestures, signs or pictures to help them understand and make their wishes known.
Seeing their surroundings plays an important part in motivating most children to learn to move independently
Sight also motivates children to learn to use their hands. This is very important for children with MSI, who generally need to use their hands much more in exploring, learning and communicating than sighted hearing children do.
Learning to explore their surroundings helps children to understand and learn to control them
MSI reduces children’s ability to anticipate events – to know what is likely to happen next. This makes exploration harder. Children with MSI often have understandable difficulties generalising skills and knowledge from one situation to another because they don’t see the similarities and differences between them.
Children with MSI cannot learn by watching what happens around them
MSI makes children learn more slowly than sighted hearing children because they get information that is of poorer quality.
This does not mean that they necessarily have cognitive learning difficulties.
Learning through touch is much slower than learning through sight, and understanding visual or auditory information takes more time when you have a sight or hearing impairment.
Coming into hospital
Any hospital visit produces worry and concern for families
Visiting hospital, even as an out-patient, presents an even bigger challenge to the MSI child. This is because consistency of support and routine in daily life play a significant part in helping children with multi-sensory impairments to anticipate events, have some control over them and take them in their stride. Just meeting so many new people, usually for short periods of time, can be stressful.
So, maintaining each child’s communication system and routine, as far as possible, will help them to settle down and reduce fear of the unknown.
If an examination, which involves painful procedures, is also part of the process, then understanding the reasons for what is happening becomes vitally important. Taking time to explain what you are doing and why will really make a difference.
Appointments at outpatient clinics
Being flexible about appointment times to minimise waiting can reduce stress levels for everyone concerned and produce a better outcome. Being seen by the same doctor and other staff can have a real benefit as building understanding is crucial.
In many clinics, the regular staff members become very familiar with the children. This makes a huge difference as information does not need to be repeatedly shared at every appointment.
Some hospitals are changing the way they work with children and young people with complex requirements, tailoring, where possible, their services to meet the individual needs of their young patients.
This includes bringing together staff from a range of disciplines and services to take a “whole child” approach, allowing for a home visit or providing a preferential appointment to reduce waiting times for treatment or assessment.
Admission to hospital
With a planned admission some detailed preparation can be done with the child and family/carers. Whatever the purpose of the admission, arrangements can be put in place to allow the child to be able to anticipate the hospital stay and for staff to find out more about the child prior to admission.
“All about me!”
Hospital staff who work in paediatric departments are already very familiar with children who have multiple problems.
Medical information about each patient is familiar reading but most staff will want to know more about the child in their care, so they can judge how best to make their stay successful. A personal passport, which includes lots of background information in a very simple format is a good place to start.
The communication section describes personal preferences for communication mode and for some children comes with its own individualised material that the child uses every day: pictures, symbols or objects.
Often the passport begins to take shape when the child is preparing for nursery or school. For infants, a single sheet can capture simple but relevant information: their likes, dislikes and ways to communicate.
Using a personal passport
This is a practical and child-centred approach to passing on key information. It gathers together complex information, distilling it into a clear, positive and accessible format. It belongs to the child and stays with the child! A passport is particularly useful in situations, like hospital stays, where information needs to be shared with a wide range of staff from different disciplines.
It’s a shortcut but it means that relevant information is available for everyone at any time. Using it helps staff to get to know the child quickly, to start communicating and to facilitate the child’s comfort and participation in their visit.
The passport contains:
- “All About Me”.
- My friends and family.
- Likes and dislikes.
- Positioning, sitting and moving.
- Eating, drinking, bathing, dressing and going to sleep.
- Health information.
As no two deafblind children will be the same, the communication section of their personal passport will tell you lots about individual ways of communicating.
Here are some examples of formal and semi-formal ways the child may use to communicate:
- Gestures – taken from actions during an activity. For example, using the motion of holding a cup to the mouth to suggest a drink or moving utensils up to the mouth to suggest eating a meal.
- Symbols, pictures and photos.
- Tactile symbols.
- Signs – usually from Makaton and British Sign Language (BSL).
- Fingerspelling – where each letter has a shape on the hand.
- Object of Reference (OR) – where an object represents a familiar activity or concept. For example: a piece of soap-scented towelling may represent a bath, or a seat belt buckle may refer to going out in a car or bus. Information comes through touch, smell and sometimes taste and the child’s association of the object with the activity or concept.
- Technical aid (speech to Braille) or computer tablet.
Many children use a “total communication” approach. This means using a number of methods together. Communication will involve using the voice in combination with gesture and preferred sign; this might mean fingerspelling, Makaton or BSL, or a symbol system using objects and pictures.
Other children and young people will be proficient in sign language and use BSL. Like all languages, levels of fluency and speed will vary and depend on the user. If you are signing to a child it is essential that you position yourself carefully, to make sure you can be seen by the child. Some young people may use BSL adapted to the tactile mode. They are often facing up to the tough task of accepting their reduced vision.
These young people will require professional interpreters when medical issues are discussed to ensure full participation. While family members will always facilitate communication it is not appropriate in formal situations.
Familiar ways of communicating
The stress felt by the child will be significantly reduced if the communication approach that the child is familiar with is adopted. However, they – and the people around them – will need to add some new vocabulary using signs, pictures or symbols for the hospital activities.
Thinking about communication
- Wait for a good moment to say hello. Don’t try to communicate when the child is concentrating on something else.
- Position yourself to maximise the vision that the child has. Close up, or at a distance.
- Always face the child. Don’t turn away when you are speaking.
- Make sure you are in the light. But don’t have a bright light behind you.
- Speak clearly. You won’t need to shout.
- Use signs, gestures or objects to help you with your conversation. Look in the communication book for the signs, pictures and symbols the child is using, or the objects of reference in the basket or bum bag.
- Don’t give up – choose a different way of saying it. Make a drawing if it helps. Try acting! Use your face to express things. Mime the action too.
Sense staff work with families of deafblind/MSI children of all ages and have a wide range of professional backgrounds. They can give your team some ‘pop-up support’ beside the bed or in the play area to help you better understand the child that is currently in your care. You can also commission training for your team to help them better understand deafblindness and MSI.
Here’s some advice on how to get started.
- Take your time – touch is very important.
- Children sometimes use eye-point if they can’t use their hands. Feet can be handy as well.
- Encourage your staff to look at the communication passport and find out how to say “hello”.
- Lots of children are accustomed to a “sleepover” in short breaks, holidays or school. A sticker countdown system can help the child to understand the length of time they will be in hospital.
- As you approach the child, always let her know by touching the bed as you get closer so she can anticipate your arrival. Use your own touch gently until you can judge the situation.
- Make sure the child’s parents/carers have a break while the child is sleeping or playing.
- Depending on the child’s vision everything may need to be closer. Use a tactile means of communicating, like hand-under-hand signing.
- Families are the experts on their child! They can help in lots of ways but they aren’t nurses or medically qualified though and can’t do what you do!
- If you regularly wear a bracelet or watch – offer the child the shape to touch – this can help the child to recognise you as a regular visitor.
- Use the pictures in the child’s communication passport to let the child make choices – like choosing lunch or a drink.
Mobility is the ability to move around. Orientation is about knowing where you are and where you are going.
Some children who are multi-sensory impaired will have enough useful sight to move unaided, at least in familiar environments. Many others will need the environment adapted for their needs.
Many will need to be guided by another person, especially when outdoors or in unfamiliar surroundings. Some will be able to manage their environment quite successfully – in daylight, or with good lighting – and will quickly get used to the layout of the ward.
A child who uses a wheelchair also has mobility requirements that relate specifically to their deafblindness. Being pushed briskly in a wheelchair, without any information about where you are going or which way the chair will turn next, is terrifying. This also applies to being moved on a trolley or in bed.
There are widely-used ways of giving information and preparing a child for a move, for example:
- Tell the child where he is going before you set out, in a way he can understand. Object cues (such as a toy for the playroom or soap for the bathroom) are useful because the child can keep referring to them throughout the journey.
- Place a hand on the child’s shoulder before turning a corner – right shoulder for turning right, left shoulder for turning left.
- Slow down before changes in floor texture, such as moving onto a doormat.
- Help children to explore routes they use regularly – landmarks, floor and wall surfaces. This will involve travelling slowly and having the chance to look and touch their surroundings.
Some children, who have physical difficulties, use adapted powered personal chairs which support their posture and allow them some personal mobility. These take up space!
Making an “MSI friendly” environment
Where in the ward?
- Avoid placing the child in an open space. Siting the bed beside a wall or a corner, partitioned with curtains, helps to reduce auditory and visual clutter.
- Adjust the blinds to avoid glare from sunlight.
- Positioning and alignment of immediate surrounding furniture needs to be consistent.
- Older, and more able children, will memorise the position of the emergency call alarm. It is really important that its position stays the same to allow them to find it easily.
- Be aware that children who wear hearing aids suffer in noisy echoing spaces such as a large ward or spaces tiled wall to floor.
- Be ready to adjust hearing aids or cochlear implants to make it easier for the child to manage a noisy situation.
Make it feel safe
- If the trolley-bed or cot is moved along the ward or corridor ensure that verbal or tactile contact is made with the child. Sing or tap out a rhythm to confirm your presence…it might be scary or it could be fun!
- Many children with MSI find large spaces threatening or simply too big to understand. They are usually more willing to explore in a small environment. Create a small space, even in the bed – if safe, and appropriate.
- Provide bolsters and soft play blocks to create physical security and comfort.
- Create a “little room” on the bed using an inexpensive small pop up tent.
- The play-worker will have great sensory toys. The Sense member of staff who is supporting the family can also give you some ideas.
- Expect some favourite toys: hanging mobiles; blanket or life quilt; personal music player and some toys that may need to be checked for suitability in a sterile environment.
The play worker or therapist will be able to bring up some toys that are suitable for a child with sensory impairment, and the child can bring his favourite toys from home, if ward protocol allows.
If an ICU or another sterile environment is required
It may not be possible to bring a lot of toys into the area but there are practical nursing items that are already on the ward that can be adapted to make excellent sterile play things:
- Filling a rubber glove with sterile material.
- Gloves filled with water – frozen to make a hand.
- A vomit bowl can be made into drums and shakers or be used as the basis of a mobile with other shiny bright visually stimulating items attached.
- An ICU blanket is shiny and fun.
- Foil sandwich platters can be made into a mobile… Torches can be used for lots of fun things.
- Plastic pill boxes make great shakers.
- Having “I’ve been GOOD!” stickers can make you very popular.
Other ‘toy tips’ for children who are confined to bed
- Vibrating snake and other toys that are battery powered to move without help.
- Space blanket and torches.
- Brain gym and action rhymes.
- Mosquito net or canopy.
- A pop-up tent – on the bed.
- Personal music player.
Sense Children’s Specialist Services
If you would like additional advice or training in this area please contact Sense’s MSI specialists. We are a national team with a wide experience of working with children who are deafblind/multi-sensory impaired. It is made up of teachers, speech and language therapists and child and family support workers who are all qualified and experienced in working with children with this range of needs.
We work in partnership with families and professionals to support children and young people of all ages who are deafblind and experience multi-sensory impairment. This includes those with learning or additional needs and children who have a condition that progressively affects both sight and hearing.
Get in touch
We have a lot of experience in supporting children and families when a child goes into hospital. For support, training and advice, contact us on 0845 127 0066. To talk to someone or find out more about what we do, email: [email protected].
References and acknowledgements
Evidence-based overview of ophthalmic disorders in deaf children: A literature update Otology and Neurology 27-2-February 2006 sup no. 1-2006 TP Nikolopoulos, D Lioumi, S Stamataki, G M O’Donoghue
Communication passport template and “All About me” Scope
Communication passports, guidelines for good practice: Sally Millar
Personal Communication Passports as a way for consulting and communicating with children with communication difficulties, to ensure consistent care: Sally Millar and Stuart Aitken The CALL Centre
Communication passport for Accident and Emergency: Gloucester NHS Trust and Royal Berkshire NHS Trust
The Hospital Communication Book: the Learning Disability Partnership Surrey
My Day Case Operation: Sheffield Children’s NHS Trust and Widget Personalised Place Mats: Angela Crocker N&WBHSST Belfast
My health, my choice: The Children’s Society
Let’s Sign and Write: Cath Smith Co-Sign Communications and Widget Software
This content was last reviewed in April 2022. We’ll review it again next year.