Preparing your child, for the challenges that he/she faces now or in the future, is one of the greatest gifts you can give to your child with complex medical needs. Evidence shows that the well prepared child benefits from:
- Knowing what will happen, when, and how often – for example, the predictability of a care intervention at home or in the hospital such as a dressing change, tracheostomy suctioning or a blood test.
- Having routines around care needs and building them into family routines – for example, a consistent routine of a care practice (same play beforehand, same time, same place, etc).
- Being allowed to participate in the care in a developmentally appropriate way. This lets your child experience a sense of control and mastery, helping develop autonomy and self-esteem.
All of these actions help reduce the added stress that children encounter through illness and helps them better adapt to the challenges that they face. Less stress means more quality of life for the child and the family.
We can prepare our children and ourselves!, in many different ways.
In this section, we will describe a variety of ways to help support your child. Find the methods that fit your child and family best.
Do not hesitate to discuss this with your medical team, they are there to help you. The better able you are to support your child, the more likely that your child will accept required care and adapt in a developmentally and emotionally positive way. Longer term, this helps a child learn how to handle new challenges, an important part of growing up.