Background:

Parents accompanying their children with complex chronic diseasesuntil death experience an extreme and complex situation, which renders them vulnerable. It is a situation experienced individually and with specific needs.

Objective:

To explore and map the available scientific evidence on parents’ experiences accompanying their children with complex chronic diseases until death in pediatric palliative care settings.

Review method:

A scoping review was prepared according to the methodology of the Joanna Briggs Institute. Two researchers conducted the articles’ analysis and extraction and the data synthesis.

Presentation and interpretation of the results:

Eight studies were identified. They were published between 2016 and 2020, and none was conducted in Portugal. The studies allowed observing that parents’ “Fighting Spirit,” associated with their “Suffering” and “Hope,” is only broken by their children’s death and that parents report the need for “Support in Grief.”

Conclusion:

The eight studies present results describing parents’ experiences. Further studies are recommended to understand the specificity of these parents’ experiences in this context.

        · resumen en Español | Portugués     · texto en Portugués     · Portugués ( pdf )