FAQ’s for professionals - paediatric spinal injuries
What is Occupational Therapy?
Kids Health Organisation gives the following very useful definition of Occupational Therapy:
“Occupational therapy (OT) treatment focuses on helping people with a physical, sensory, or cognitive disability be as independent as possible in all areas of their lives. OT can help kids with various needs improve their cognitive, physical, sensory, and motor skills and enhance their self-esteem and sense of accomplishment.
Some people may think that occupational therapy is only for adults; kids, after all, do not have occupations. But a child's main job is playing and learning, and occupational therapists can evaluate kids' skills for playing, school performance, and daily activities and compare them with what is developmentally appropriate for that age group.”
http://kidshealth.org/parent/system/ill/occupational_therapy.html
What will a spinal cord injury mean for a child?
Spinal cord injury in children can happen as a result of trauma during birth, road traffic accident, sporting injury, falling from a height or other trauma. The effect of the injury depends on what part of the spine or level is injured and whether it is a complete or incomplete injury. A complete injury results in the loss of sensation and total paralysis below the level of that injury, for example a complete injury in the neck area will mean that the child has no movement or sensation below the chest. If the injury is very high in the neck, the child may need the support of a respirator to breathe. If the injury is lower down in the thoracic or lumbar region, then the child will have loss of sensation and movement below this.
Complete spinal cord injuries usually mean that loss of bowel and bladder control so a child will require a catheter to void the bladder and suppositories or enemas to regulate bowel function.
Incomplete injuries may result in some sensation being retained and perhaps some active movement below the level of the injury, but this will be very variable.
How can Occupational Therapy help a child with a spinal cord injury?
The OT will help a child to begin to regain independence following a SCI, by modifying the way in which they do things or by recommending assistive equipment. Some of the areas the OT will work on will be getting washed and dressed and engaging in play activities, within the abilities of the child, using a wheelchair, either by self-propelling or using a power chair. The OT will look at different switches to operate a power chair depending on the arm/hand function of the child. Some children may require chin operated switches or even “suck and puff” switches, if their injury is at high level. The important thing is that the child is able to move themselves around as independently as possible. The OT will work closely with the physiotherapist and nurses to help the child adjust to their disability and to work towards leading a fulfilling and active life.
How soon can OT be started after SCI?
As soon as the doctors agree that the child is medically stable, rehabilitation will begin. Often the first thing will be physiotherapy and occupational therapy, working together, to get the child sitting out of bed for short periods during the day. When the child is first up, sitting and balancing will be quite challenging, especially if they have lost complete sensation below the level of the injury. Sitting in a chair or wheelchair may seem very strange and will take a bit of getting used to. The OT will introduce games and play activities so that the child learns to sit and balance whilst being distracted. Gradually the child will learn to sit up and use his/her hands to do things other than just hold on!
Children with lower cervical, thoracic or lumbar injuries will begin to learn how to transfer themselves from the bed to and from the wheelchair independently, sometimes using equipment to help such as a sliding board.
Regaining this independence will help a child enormously to feel that they can get about and do things as and when they want to rather than being dependent on others.
In these early days it is not unusual for a child to take a tumble or two and this is part of the learning. Without taking these risks a child cannot progress towards independence. The OT and physio will watch carefully to minimise the risks, but once a child starts to do these things on their own an occasional spill may be inevitable!
What will SCI mean for the rest of the family?
When a child sustains a spinal cord injury, this will have a devastating effect on the family. It may mean the child is in hospital for a long period of time, which puts pressure on the parents, who may spend a lot of time juggling hospital stays and visits with the care of other children. Families will be offered support from the professionals at the hospital to help them understand what has happened to the child and the OT and other professionals can really help the whole family understand what has happened and what this will mean for the future.
What equipment and adaptations to the home will a child with SCI need?
When a child comes home they may be dependent on a wheelchair to get around. This will mean that they need more space and may need to have their bed moved to the ground floor, if they are too heavy to carry up and down the stairs. Ultimately they will need ground floor living as they grow, if they are dependent on a wheelchair. The OT will probably carry out a home visit before the child is discharged home and may liaise with the Local Authority OT if adaptations, such as ramps, ground floor bathrooms or extensions need installing.
Some children will need to have carers coming into the home to help with personal care or general looking after, if the families are unable to provide this care.
Getting a child out and about may require an adapted vehicle, which allows a child to travel in his/her wheelchair. The OT can advise on the purchase of a vehicle that is right for the family.
What activities can a child with a spinal injury take part in?
Young people adapt to using a wheelchair or to having impaired movement or mobility very quickly. Given the right encouragement to achieve as much independence as possible, a child or young person will be able to take part in all sorts of leisure or sporting activities, even if they require care or support in doing so. You only have to look at the range of Paralympics sports people to see the achievements attained by some people with spinal injuries who pursue sporting interests and are prepared to work hard. Activity centres, such as the Calvert Trust (http://www.calvert-trust.org.uk/), offer opportunities to try out different outdoor pursuits.
Will a child with SCI be able to go back to main stream education?
There is no reason why not, The OT will involve all parties in the discussion around and will liaise with the school to make sure they have everything in place to accommodate a child’s needs so that their education can continue as soon as possible.
Will a child with a spinal injury ever be grow up to have a "normal" life?
A spinal injury is a physical injury and the brain of the child should not be affected, unless a brain injury occurred at the same time. The child will have the same learning potential as before the injury. Work opportunities will need to be discussed with a careers advisor and the child’s teacher as part of the transition from child to adult. Further education, vocational learning and job opportunities will need to take into account the young person’s abilities. Some jobs are more easily tailored to being done by a person using a wheelchair or with impaired mobility or hand function, but with the right advice a young person should be able to find meaningful occupation after leaving school.
A young person with a spinal injury should be encouraged to develop leisure interests and to mix with their peers socially. This will happen naturally as the young person will have friends at school or at clubs and activities that he/she engages in.
Many people with spinal injuries go on to have partners or to marry.
Further information for families, children and young people with spinal cord injury can be found at:
http://www.backuptrust.org.uk/home
