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Back Care for Parents & Carers of children with Rett Syndrome

Disclaimer: This fact sheet is for education purposes only. Please consult with your doctor or other health professional to make sure this information is right for your child.

Looking after your back

The daily care of children with a disability is physically demanding. Consequently many carers of children who have a physical disability experience some back pain. Also these demands can increase suddenly if there are changes in the child's level of mobility due to pain, surgery or a fracture.

Looking after your back is a complex issue

• When your children are young and need your help, you lift them a lot. It can be difficult to recognise when the physical assistance you are giving to your children has gone beyond what can be safely expected.
• Parents want their children to grow and develop normally, so you may feel reluctant to start using special equipment which admits your child's disability.
• It is often difficult to ask for help. It is natural to want to retain your family's privacy and freedom. It is alright to want your house to feel and look like a normal family home and not like a hospital.
• Equipment can be expensive and takes up space. At first it can make care slower and using equipment appears to be more difficult.
• In addition to caring for your child, you use your back when doing household chores, shopping, at work and during leisure.

It is important to think carefully about the future - rather than waiting for a crisis to occur

• Homecare workers have occupational (work) health and safety standards. They are not permitted to lift a person over 16kgs unless using special (manual handling) equipment, such as an electric high/low bed, a hoist or a shower chair.
• If you do not have manual handling equipment it may take some time (months or years) to get the right assessments and funding.
• An injury or problem with your back will make caring for your child very difficult without manual handling equipment.

Assess your physical risk factors

• Is your child over 16Kg?
• Do you lift your child frequently?
• Do you bend or twist when lifting?
• Do you sometimes lift in a restricted space?
• Is your child awkward to lift?
• Do you keep your child close to your body while lifting them?
• Do you lift your child from a low height or from surfaces above waist height?
• Do you often need to reach or bend forward?
• Do you always have access to help from others?
• Do you experience back pain?
• Have you previously needed treatment for a back injury or back pain?
• Do you have any arm or leg pain or injuries?

If you answer yes to any of these questions you are at risk of a back injury

What you can do

Gather information

• Look at your situation - write down exactly what you do in a day/week so that you can gain a clearer picture of when and how often you are lifting. This may help you find ways of reducing the number of lifts, or changing the timing of activities so that you can get more help.
• Request help from an Occupational Therapist as soon as possible. There can be a waiting time for services and funding may be limited. An Occupational Therapist can advise and assist with applications for equipment and home modifications.

Implement Back Care Strategies - during all lifting activities

• Think about method :
• Plan your lift or transfer.
• Make sure objects are out of the way.
• Lift with your child's weight, or any other object you are lifting, close to your body.
• Use your legs to do the work, do not bend your back.
• Tighten your stomach muscles without holding your breath - this provides your back with extra support during the activity.
• Ask for assistance if your child or the load is too heavy.
• Avoid lifting above your head or below your knees.
• Think about getting manual handling equipment such as:
• Slide sheets (moving child up the bed, pivoting into car).
• Pivot pads for transfers (such as moving your child from chair to car).
• Hoists.
• Electric high / low beds - Can go up or down to make it easier for you and your child.
• Wheelchairs.
• Mobile shower/toilet chairs.
• Plan for the future when purchasing a house or a car. For example you may need:
• To think about the number of stairs and or steps.
• Space and a flat floor to allow for shower equipment.
• Space to allow the use of a hoist.
• A van with a lifting platform to transport your child in a wheelchair.
• To choose the right wheelchair so it can go in cars and Taxis.
• Consider going to a manual handling course. DADHC run courses on back care for parents and homecare workers.
• Try a regular exercise routine, even just a 20 minute walk every few days, will keep your muscles in good condition and make caring for your child safer and easier.

• Many parents suffer back pain when caring for their children who have a physical disability.
• A back injury can make it very difficult to care for your child.
• You can do something now and in the future to stop an injury occurring.
• Your Occupational Therapist can help you to find the right solutions.

The Children's Hospital at Westmead Tel: (02) 9845 3585 Fax: (02) 9845 3562 www.chw.edu.au	Sydney Children's Hospital, Randwick Tel: (02) 9382 1688 Fax: (02) 9382 1451 www.sch.edu.au	Kaleidoscope, Hunter Children's Health Network Tel: (02) 4921 3670 Fax: (02) 4921 3599 www.kaleidoscope.org.au