Advocate for Your Child
Hospital can separate families and destroy the familiarity and security very young children need to thrive.
This can cause great fear, stress and sometimes life-long negative effects on a child’s emotional and physical well-being.
However, you have enormous capacity as a parent to reduce this stress and make your child’s hospital stay a positive experience.
Stay With Your Child
You have a responsibility to comfort, protect and advocate for your child. To do that, you need to be present. This will also help you understand retinoblastoma, its treatment and the hospital systems, so you can advocate well for her.
Most hospitals understand the benefits children reap from parental presence, and encourage parents to stay. Insist on staying with your child, even if you are told to leave at night, or that you can only visit during visiting hours.
Many hospitals provide a bed in the child’s room or next to her bed on an open ward. Some have special rooms for parents. If provisions are not explained to you, ask what is available.
Some hospitals charge parents to stay. If cost is a barrier to remaining with your child, discuss this promptly with the staff and ask if any financial help is available. Make arrangements early so you and your child are not unduly distressed in the evening.
Care for Your Child
You can give much needed comfort by providing basic personal care. For example, help with toileting, cleaning up little accidents, changing diapers and bedding.
You can also do basic nursing tasks like giving eye drops, central line care and changing dressings. This will help the nurses and give you a great sense of power.
If your child would like you to perform these tasks, the nurses will usually be happy to teach you, but let your child choose if she is old enough – this control is also vital to her.
Give Your Child Control
Give your child plenty of choices if she is old enough. For example, what to wear, what to eat, when to bathe, what distraction toys for procedures. For more information on engaging your child in hospital, click here.
If You Can’t Stay
Many parents cannot stay with their child. They may have other children to care for, or need to work to maintain insurance or pay the medical bill. They may not be able to afford the costs of staying, especially if there is no family housing.
If this is your reality, try to arrange for another relative or trusted friend to take your place at the hospital. Introduce that person to the doctors and nurses caring for your child.
Make it clear to both the individual and medical staff that all procedures or treatments must be explained to you and be authorised only by you.
Make a plan with this person to call you if there are any problems, or if anyone attempts to do an unplanned procedure, unless it is an emergency.
Provide your contact telephone number to both the advocate and medical team. Tape this number to your child’s bed so the entire team knows how to contact you.