Understanding more about the children in your care.<\/p>\n\n\n\n
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. <\/p>\n\n\n\n
However, there is a lot that can be done to make the child\u2019s 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. <\/p>\n\n\n\n
What this document covers: <\/p>\n\n\n\n
The production of this page was made possible by donations kindly given for the Candis Big Give appeal.<\/p>\n\n\n\n
Children who have sight and hearing impairments are said to be deafblind. This combination of impairments actually causes additional difficulties \u2013 such as problems with balance and spatial awareness \u2013 which is why we talk of multi-sensory impairment (MSI).<\/p>\n\n\n\n
Sight and hearing are often called the distance senses because they give us information about what\u2019s happening around us. <\/p>\n\n\n\n
If we have hearing and visual impairments our experience of the world is different \u2013 and in particular our ability to absorb incidental information and to communicate is affected. <\/p>\n\n\n\n
Touch, taste and balance are close senses, giving information only about what is happening now, within arm\u2019s reach. <\/p>\n\n\n\n
Smell gives some distance information, but it\u2019s much less useful to us than sight and hearing. Sight and hearing provide most of the information we need to learn and function. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
When one distance sense is impaired, information from the other can be used to compensate to some degree \u2013 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. <\/p>\n\n\n\n
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.<\/p>\n\n\n\n
Children with multi-sensory-impairment need to get as much information as possible from their residual sight and hearing and from their other senses \u2013 by using their senses together. For many children, touch can provide a means of learning about the world and a means of communicating.<\/p>\n\n\n\n
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.<\/p>\n\n\n\n
We normally get most of our information about the world around us through sight and hearing \u2013 so multi-sensory impairment makes a significant difference to children\u2019s learning and development.<\/p>\n\n\n\n
Poor sight and hearing effectively restrict experience to the here-and-now \u2013 what is happening at this moment, within arm\u2019s 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.<\/p>\n\n\n\n
Poor sight and hearing can be accompanied by difficulties with other senses \u2013 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\u2019s much harder to learn to understand and use sensory information that is partial or distorted. <\/p>\n\n\n\n
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\u2019t see or hear the smiles, looks and speech most children respond to. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
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.<\/p>\n\n\n\n
MSI reduces children\u2019s ability to anticipate events \u2013 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\u2019t see the similarities and differences between them. <\/p>\n\n\n\n
MSI makes children learn more slowly than sighted hearing children because they get information that is of poorer quality. <\/p>\n\n\n\n
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.<\/p>\n\n<\/div>\n <\/div>\n<\/div>\n\n\n\n
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. <\/p>\n\n\n\n
So, maintaining each child\u2019s communication system and routine, as far as possible, will help them to settle down and reduce fear of the unknown. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
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.<\/p>\n\n\n\n
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. <\/p>\n\n\n\n
This includes bringing together staff from a range of disciplines and services to take a \u201cwhole child\u201d approach, allowing for a home visit or providing a preferential appointment to reduce waiting times for treatment or assessment. <\/p>\n\n\n\n
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.<\/p>\n\n\n\n
Hospital staff who work in paediatric departments are already very familiar<\/strong> with children who have multiple problems.<\/p>\n\n\n\n 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<\/strong>, which includes lots of background information in a very simple format is a good place to start. <\/p>\n\n\n\n The communication section<\/a> 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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. <\/p>\n\n\n\n It\u2019s 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\u2019s comfort and participation in their visit.<\/p>\n\n\n\n The passport contains:<\/p>\n\n\n\n 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. <\/strong><\/p>\n\n\n\n Here are some examples of formal and semi-formal ways the child may use to communicate:<\/p>\n\n\n\n Many children use a \u201ctotal communication<\/strong>\u201d 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n These young people will require professional interpreters<\/strong> when medical issues are discussed to ensure full participation. While family members will always facilitate communication it is not appropriate in formal situations.<\/p>\n\n\n\n The stress felt by the child will be significantly reduced if the communication approach that the child is familiar with is adopted. However, they \u2013 and the people around them \u2013 will need to add some new vocabulary using signs, pictures or symbols for the hospital activities.<\/p>\n\n\n\n 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 \u2018pop-up support\u2019 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.<\/p>\n\n\n\n Here\u2019s some advice on how to get started. <\/p>\n\n\n\n Mobility is the ability to move around. Orientation is about knowing where you are and where you are going. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n 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 \u2013 in daylight, or with good lighting \u2013 and will quickly get used to the layout of the ward. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n There are widely-used ways of giving information and preparing a child for a move, for example:<\/p>\n\n\n\n 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!<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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: <\/p>\n\n\n\n If you would like additional advice or training in this area please contact Sense’s MSI specialists<\/a>. 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. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n 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\u2019Donoghue <\/p>\n\n\n\n Communication passport template and \u201cAll About me\u201d Scope<\/a> <\/p>\n\n\n\n Communication passports, guidelines for good practice: Sally Millar <\/p>\n\n\n\n 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 <\/a><\/p>\n\n\n\n Communication passport for Accident and Emergency: Gloucester NHS Trust and Royal Berkshire NHS Trust <\/p>\n\n\n\n The Hospital Communication Book: the Learning Disability Partnership Surrey <\/p>\n\n\n\n My Day Case Operation: Sheffield Children\u2019s NHS Trust and Widget Personalised Place Mats: Angela Crocker N&WBHSST Belfast <\/p>\n\n\n\n My health, my choice: The Children\u2019s Society <\/p>\n\n\n\n Let\u2019s Sign and Write: Cath Smith Co-Sign Communications and Widget Software<\/a><\/p>\n\n\n\n Sense<\/p>\n\n<\/div>\n <\/div>\n<\/div>\n\n\n\n If you would like to find out more about the services we provide, please get in touch with us at info@sense.org.uk<\/a> or visit our get in touch<\/a> page for other ways to contact us.<\/p>\n\n\nUsing a personal passport<\/h3>\n\n\n\n
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Communication<\/h2>\n\n\n\n
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Familiar ways of communicating<\/h3>\n\n\n\n
Thinking about communication<\/h2>\n\n\n\n
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Getting started<\/h2>\n\n\n\n
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Moving around<\/h2>\n\n\n\n
Wheelchairs<\/h3>\n\n\n\n
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Making an \u201cMSI friendly\u201d environment<\/h2>\n\n\n\n
Where in the ward? <\/h3>\n\n\n\n
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Furniture <\/h3>\n\n\n\n
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Hearing aids<\/h3>\n\n\n\n
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Make it feel safe<\/h3>\n\n\n\n
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Toys<\/h3>\n\n\n\n
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Play<\/h2>\n\n\n\n
If an ICU or another sterile environment is required<\/h3>\n\n\n\n
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Other \u2018toy tips\u2019 for children who are confined to bed<\/h3>\n\n\n\n
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Sense Children\u2019s Specialist Services<\/h3>\n\n\n\n
References and acknowledgements<\/h2>\n\n\n\n
Get in touch<\/h2>\n\n\n\n