The History of Research Advocacy in Cerebral Palsy.

Cerebral palsy (CP) is the most common motor disability of childhood, but US federal government investment into CP research has historically been under-prioritized and under-funded. This issue was brought to the forefront by the parent advocacy group Reaching for the Stars who partnered with the American Academy for Cerebral Palsy and Developmental Medicine to create a strong parent/professional partnership. This collaboration has resulted in increased awareness and federal commitment to cerebral palsy. This article highlights the important steps and lessons learned in the continuing journey of federal advocacy for CP research.

A resource guide to understanding cerebral palsy: Commentary on collaboration to support health literacy and shared decision making.

BACKGROUND: Shared decision-making is a newer model of patient-centered healthcare; it is particularly important for people with chronic conditions including cerebral palsy. Health literacy is the ability of an individual to obtain, communicate, process, and understand health information and is a crucial component to shared decision-making. With the abundance of information that can be found on the internet, it can be difficult to navigate and determine which websites contain reliable information. OBJECTIVE: Provide a commentary article aimed to provide healthcare professionals a current, annotated list of reliable online resources in regards to cerebral palsy throughout the lifespan with the goal of supporting health literacy and therefore improving shared decision-making and reducing disparity. CONCLUSION: Access to accurate and reliable information is an important aspect of health literacy, which in turn will optimize outcomes and build the foundation for shared decision-making between the provider and the patient. Educational materials should be easy to navigate and utilize. This article serves as a guide for reliable CP resources.