On a common journey

Mgr. Lenka Kohoutková

Mgr. Jolana Kopejsková

If a family decides to care for a child with a life-limiting illness at home, they need a safe environment and the support of a team of experts. Parents must be fully informed of the diagnosis and the risks associated with the care. The team includes a doctor, a health-social worker and an ECI specialist. In the presentation, we will explain the specifics of the SMA diagnosis and how to communicate with the family after the diagnosis. We will demonstrate the cooperation of the Centrum provázení, ECI specialist and other experts in the case study. A jointly compiled care plan, mutual communication between all experts, will help parents manage intensive care for their child and better estimate their limits.