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Including parents in decision-making is an important goal in medicine. We still have a lot to learn about what influences the decisions that parents make. Cerebral palsy (CP) is a lifelong and complex condition. Parents of children with CP make a lot of decisions about what to do, or not, related to their child's medical care. The purpose of our study was to talk to parents to understand what things impact their decision-making.
One author talked to 18 mothers of 20 children. Children had to be 4 to 8 years old, have spasticity, and have some ability to walk. We wanted to talk to this group of parents specifically because, not only do families have a lot of medical decisions to make, but some of the treatments do not have a lot of research to know how helpful they are.
- The expectations mothers had about raising a child with a disability changed a lot over time.
- Mothers thought about tradeoffs between the physical benefits of a treatment or health care provider's visit versus negative impact to their child's and family's overall wellbeing.
- Mothers were often overburdened, not by their children, but because they did not have enough help from insurance or coordinating so many different types of appointments and treatments.
- Mothers were often uncertain in their decisions.
