Assisting Children With Sight Loss in Hospital and at the Doctor's Surgery

In hospital

Babies as patients

Babies who are blind or who have impaired vision need particular care, as patients, so that they do not withdraw from the outside world. Remember that babies with sight problems are surrounded by sounds, smells and sensations that are meaningless unless you help them to form an understanding of what they mean. They do not have the same visual cues, to warn of impending discomfort, as are available to babies and children who have good vision. Therefore, your thoughtfulness and care is critical. Babies’ natural curiosity and desire to reach out and participate in the world should be nurtured.

Try to:

• Always address babies by name letting them know that they are to be “part of the action”. They will then learn to concentrate on other clues to understand what is going on.

• Talk to the baby, the human voice introduces interaction. Even though words are not understood, the sounds and your tone of voice can establish a relationship.

• Signal discomfort in a consistent manner – for example, a gentle click of the heel before giving an injection allows the baby to associate this cue with an unpleasant activity. This will help to prevent withdrawal, and keep the baby receptive to positive human contact.

• Touch the baby’s hand gently before presenting an object. This can help to prevent the “Good Fairy Syndrome” – the false idea that things appear from nowhere and can disappear again.

• Hold babies while feeding them, creating a positive physical association.

• Guide the baby’s hand gently to touch different textures. This stimulates tactual curiosity and helps to establish the concept of reaching.

• Touch the baby as much as possible. The only associations very young blind babies have are centred around human contact. This needs continuous reinforcement.

• Describe the parts of the body as you touch the baby.

• Hold the baby often. This helps babies to learn that they are part of the world, not a world within themselves.

• It is important to play with babies who are blind or have impaired vision. They need positive interaction at this early age.

The newborn infant

It is important to be cautious with newborn infants, whose nervous system may not be mature enough to tolerate even minimal stimulation. The baby’s energies may all be directed at survival.

• Talk to newborn babies before touching or picking them up. This helps them to anticipate change.

• Read the total body for responsiveness, not just the face.

• Remember that newborn babies have not yet established attachments to their mothers or significant others, and do not yet even understand the concept of “self” and “others”.

• Condition babies to associate the human voice with contact by talking softly before performing tasks.

• Develop patterns for regular activities, conditioning the baby to anticipate events so as not to be startled by them. For example, with feeding, if you consistently tell babies “Time to eat”, and gently touch them on the nose before inserting the bottle, they may learn to recognize the experience.

Pre-school children who are totally blind or who have very little vision

Pre-school children who are blind, or who have very little vision, will have already formed some associations for understanding the world. They are aware of “object permanence” and have begun to understand the relationship between cause and effect. Mobility has rewarded their curiosity to know what goes on around them and verbal descriptions have meaning for them.

Try to:

• Address the child by name when entering the room, even if you are just passing through. It will reinforce the sense of human contact and reduce any feeling of isolation.

• Explain what you are doing. Tell the child that you are pouring water, taking a pulse, or writing on a chart. The child will be aware of patterns of behaviour and may start to understand what is going on. This will reduce fear of the unknown.

• Warn the child when there will be discomfort. This will help to prevent generalised fear.

• Describe the room and any change in the surroundings. When the child is going for x-ray, for example, describe the route so that the child can work with associating clues, such as sound and smells.

• Bring the child for a walk as often as possible. Pre-school children who have very little or no vision develop space perception through mobility.

• Provide some time each day when the television, radio and other artificial sounds are turned off, to help the child to start understanding other sound cues.

• Introduce objects and procedures the “hands off” way. For example, show the child the food on the tray, explain where it is positioned using directions that the child understands and explain how to open the containers. Place the call button in a consistent place and let the child check how it works. In the bathroom tell the child where to find the toilet-paper, soap and so on. This helps pre-school children to move towards independence and to feel how their own actions trigger cause and effect relationships. It also builds up the strength of their hands, if they are allowed to struggle with container lids rather than have someone do it for them. However, if a child is having great difficulty, of course you should do it for them, to prevent them feeling frustrated.

• Explain procedures and unfamiliar surroundings, even if the child does not understand. Discussing the activity and your tone of voice will be reassuring in this different environment. For example, if the child is not usually in a cot at home, but finds bars around his or her bed in the hospital, he or she may feel trapped – even more so than a sighted child.

Pre-school children with impaired vision

Children with impaired vision can usually function very well in familiar surroundings. However, in the unfamiliar hospital environment they may not be able to manage as well. Added to that is the stress of being ill or injured and separated from family members, which is very likely to make it difficult for children to make the best use of whatever vision they have.

• Address children who have impaired vision by name and identify yourself. When entering the room or when doing tasks related to the child whose vision is impaired, let them know who the people involved are.

• Explain how things work. Help children with impaired vision to build visual interpretive skills by pointing out and demonstrating related objects, sounds and actions.

• Let the child to safely explore objects the “hands on” way, encouraging the child to tactually explore things like stethoscopes and wheelchairs. This helps children to understand, and reinforces any accurate information from their vision.

• Give plenty of positive physical and verbal contact to enhance the awareness of approval without visual cues.

The newly blind child

Children who have very recently lost some or all of their vision have particular fears and disorientation to cope with. Your help at this early point can be critical to their adjustment.

• Help children who have recently lost vision to realize that they are not alone. They will feel a new and scary isolation without sight, and may show signs of anxiety when left alone.

• Reduce fear with calm conversation. Use the tone of your voice to relay comfort.

• Give plenty of positive physical and verbal approval. Children who have lost their vision no longer have the subtle visual signs that they were used to, like glances of approval that show them that everything is all right. Compensate with physical and verbal contact such as a gentle touch of the hand.

• Promote thinking in terms of touch. Consider using the “hands on” way to introduce objects and ask the child to describe the experience.

The doctor’s surgery

For any child, visits to the doctor’s surgery can be stressful. The stress is usually greater for a child whose vision is impaired or who is totally blind.

Parents and carers

Rehearse the visit to the doctor’s surgery beforehand, by playing a game of “doctor’s surgery” with the child. Parents and carers can measure height and weight, take the child’s temperature, tap his or her knees, and ask the child to take deep breaths while using a toy stethoscope to listen to the child’s heart. Then switch roles let the child do the same, either to another child, a doll, or to the parent or carer. Dolls or other children can represent other patients in the waiting room, a receptionist with toy phone and/or a nurse.

If you know in advance what procedure the child will undergo, rehearse this and explain it.

At the doctor’s surgery

Bring toys for the child to play with while in the waiting room. See Choosing Toys for Children with Sight Loss.

Parents, carers, nurses, doctors

Describe the check-up room. Let the child actively explore it if it is safe to do so. If the child finds that there is a sink in the room, he or she will be able to connect that knowledge with the sound of running water when the doctor and/or nurse wash their hands.

If a child has visited before, and last time got an injection or other treatment which hurt, he or she may remember that and become anxious. In that case, if you are very sure that there will be no pain on this occasion, reassure the child of that fact.

Overview - 3 steps

• Address the child by name.
• Explain what will happen and why, before it is done.
• Let the child tactually explore tools that are being used, if it is safe to do so, such as a stethoscope, and explain the purpose of its contact with the child’s body.

Guiding a child who has impaired vision

Ideally, all staff who are likely to have to guide a child (or adult) who is totally blind or who has impaired vision should receive sighted guide skills training. Practical, experiential learning which includes being guided while under blindfold or while wearing “SimSpecs” is universally acknowledged as being far better than merely reading advice. However, advice is offered here to help staff who have not had training but who nonetheless may find themselves in the position of having to guide a child who has impaired vision or who is totally blind.

Speak to make contact – give your name and role, e.g. “Hi, I’m Mary, I’m a nurse.” Use the child’s name, explain where you want to bring him or her and ask if she or he would like to take your elbow (if tall enough) or your hand or wrist (if small). Keep your arm close to your side, don’t hold it out and away from you. Don’t swing the arm that the child is holding; keep it steady.

If the child has enough vision to simply follow you without holding on, and prefers to do that, be alert for obstacles which the child may not be able to see, and stop while explaining what the obstacle is. If you try to explain while continuing to move forward, the child may not hear or understand you in time to be ready for the obstacle.

Always stop the child and make sure that he or she is holding the handrail and has found the edge of the first step, before proceeding up or down stairs. You should be one step in front of the child on stairs, rather than either level with or behind him or her.

If the child is holding your elbow, wrist or hand, and you need to go single file for any reason, explain why to the child and put the arm that he/she is gripping behind your back. This helps to position the child behind you. When you have both passed the narrow or crowded area, tell the child, and bring your arm back into the normal position by your side.

Going through doors, the child should be on the hinge side of the door. If the door has a strong spring, even quite a big child with impaired vision may not be able to manage it well. Go carefully, taking the weight of the door yourself as much as possible, and warning the child to expect a heavy door.

To direct a child onto a chair or a bed, touch it with your own hand - the hand that the child is holding – and explain that this is the chair/bed, and that you want the child to get onto it. If there are any unusual features, such as if the chair has arm rests or wheels, or if it’s a swivel chair, tell the child this before he/she starts trying to get onto it. If the bed or chair is high and the child is small or does not have good climbing skills, of course you can help them physically. Ideally, the child should be allowed to do as much as she/he can independently. Otherwise, a child in hospital may regress and lose skills that she/he had developed while at home.

Disability awareness training for healthcare staff

Disability awareness and equality training is of vital importance towards the provision of healthcare services to children with vision impairments as patients. Disability awareness training for both frontline and managerial staff will encourage a greater understanding of the issues around sight loss and promote quality services that are accessible. The aim of disability awareness training is to remove some of the communication, attitudinal and physical barriers that prevent people with sight loss from fully participating in society.

NCBI offers disability awareness training in partnership with other disability organizations which includes physical and sensory disability as well as mental health issues and would be happy to advise further.

Getting in touch with NCBI services

NCBI is a not for profit charitable organisation which provides support and services nationwide to people of all ages experiencing sight loss.

If you are working with a child experiencing sight loss, NCBI may have some services that they would find useful. Encourage the family to get in touch with us.

A child experiencing difficulty with their eyesight, to the point where everyday tasks are becoming harder to carry out, can be referred to NCBI for assessment.

A referral to NCBI will open up access to a wide range of services, including practical advice, emotional support, a low vision service, library service and training for independent living. If in doubt, refer any child experiencing significant sight loss to NCBI.

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