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You are here: Home1 / Retinoblastoma Resource2 / Child Life3 / Procedure Support4 / Make a Plan
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

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Make a Plan

Procedures will run more smoothly, with less distress, when you and your child are well prepared for them.

When you have a coping plan, you will both be less anxious and feel a greater sense of control over the experience.

A coping plan includes when and how to tell your child about the procedure, how you will support your child and the choices your child will have before, during and after the procedure, and any rewards your child may receive after the procedure.

A child rests in hospital.

Give Advance Notice

Children respond differently to advance knowledge of an approaching procedure. Your child’s ability to cope will depend on his age, temperament, past experience, understanding and mastery of the procedure or similar procedures.

Children may cope well with one procedure, but find the prospect of another difficult. For example, your child may do well with advance notice of port access, but become very stressed about the prospect of receiving eye drops.

Establishing how much notice to give will be a process of trial and error. Talk openly with your child about the procedures he encounters, and encourage him to share his feelings. Be flexible if his needs change as his journey progresses.

Remember that children under 6yrs have a limited ability to grasp the concept of time. Your child is unlikely to understand “in three days” or “on Monday”. Simple concepts such as yesterday, today and tomorrow are more manageable and easier for young children to understand.

Giving advance notice of a procedure to a young child simply allows you time together to prepare and practice coping strategies.

Aim for the Familiar

Repetition comforts and reassures young children, who thrive on routine. Ask that specific procedures be done by the same person each time. For example, the same nurse inserts every IV, and the same doctor does all lumbar punctures. This may not always be possible, but request it whenever you can.

Call the ward or department before your appointment to find out who will be doing the procedure so you can prepare your child for any changes to routine.

You can ask for the medical professional with most experience to do procedures like bone marrow aspirate. Be aware though that seniority does not necessarily mean most experience.

Senior doctors (consultants and attendings) often do not perform these procedures regularly. Fellows, registrars/residents and nurse specialists often have more current experience as they do most procedures.

Advocate Your Presence

You should be able to choose to be present during a procedure. Children take their cues from the people most familiar to them. If you are calm and your child is well prepared, the procedure will usually run quick and smooth, with minimal stress for both of you.

If you are unable to help your child during the procedure, ask one of the nurses or a child life specialist to provide support instead. Make sure your child is aware of the plan beforehand, and share his coping routine with the support person.

Create Choices

Think about the choices you can let your child make. Giving him some control over the experience will help him stay calm and involved. Look in the procedure pages for ideas of choices to offer, and discuss them with your child.

Plan a Reward (When Necessary or Appropriate)

Many hospitals have reward boxes/treasure boxes from which children can choose a small gift after their procedure. If your hospital does not have this, consider bringing a small treat that is appropriate for the situation.

Be careful to present this treat as a celebratory reward after the procedure. Do not use it as a bribe as this is very unhelpful and can cause greater upset when used in future appointments.

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  • Retinoblastoma Overview
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