Treatment Decision Making Guide
Step 12 – Support Your Child and Yourself
Once you have made your treatment decision, you will need to talk about it with your child.
Including all children in their care is vital – even infants. Explanations, language, supports, and choices should be tailored to their age and stage of development.
Children who feel in control of their experience have less fear and anxiety, and are more able to trust and cooperate with their caregivers.
When children with retinoblastoma grow up into young adults, they will need to make their own healthcare decisions, and give independent informed consent. Supporting your child’s active participation in their medical experience from the start will help them become confident consumers and healthcare advocates.
Parents often worry that their diagnosed child or cancer-free siblings will be scared, angry, or upset about certain treatments and their effects, now or in the future – such concerns can influence the treatment decision. However, ensuring your child is appropriately prepared for and involved with their care, and siblings are effectively supported, can help them learn about and safely process their experiences.
Intense focus on the medical process and the unknown can create overwhelming parental stress, especially when you’re confined to hospital with your sick, anxious child for a long time. Working with child life professionals, or using these special child-friendly support tools directly with your child, can empower you to address your child’s comfort and wellbeing, and relieve your own stress.
Learning child life techniques and advocating for child-friendly care, engaging in medical and distraction play, pain management, and other activities creates a highly positive focus, and a sense that you are actively supporting your child. In the process, you can overcome the inertia of passively waiting for a procedure, change in symptoms, the next vitals check, or doctor consult, and feel more positively about your treatment decisions.