Concurrence of early intervention and palliative care for a child with a life-limiting diagnosis

Mgr. Pavla Matyášová
Bc. Lenka Koubková

Společnost pro ranou péči, branch for family Olomouc

Early intervention has an irreplaceable role in accompanying families of children with disabilities. For children with a life-limiting diagnosis (most often these are children with a metabolic or rare genetic disease), this social service strives all the more to support the family as a whole and manage the demanding care of the child in the home environment.

In many cases, the disease threatens the child’s life, and the child can succumb to the disease at any time. The prognosis is often very difficult to determine, and families live in great uncertainty for a long time. Early intervention accompanies families of children with a serious diagnosis or with a disability from the child’s birth to the age of seven – ideally immediately after the diagnosis has been announced. ECI accompanies the parents through critical situations during repeated hospitalizations, provides equipment, maximum comfort so that the child can stay as long as possible in the home environment and, depending on the level of health, can experience joy. This is individualized support for the family and the child, incl. siblings.

Parents are not ready for their child to leave. They want to take care of the child at home and experience joy with their child. But at the same time, they are worried that they won’t be able to do it themselves. With early intervention, they are not left alone, the family gets a guide for their difficult journey thanks to early intervention. Together with the family, we are looking for the most suitable moment to invite palliative care into the family. This is helped by the ECI specialist’s repeated supportive conversations with the parents and the continuous evaluation of the situation and the health status of the child. The moment when the family calls for palliative care usually occurs when the child’s health condition deteriorates or when we are faced with the question of how to continue to maintain the comfort and quality of care for the child in the home environment. The support of experts from early intervention and palliative care is an ideal combination to ensure all the needs of the family, incl. follow-up care for the family after the death of a child.