Follow-up care of child and adolescent survivors of brain tumors: Current practice and unmet needs – from the perspectives of the survivors, their families and nurses

Norwegian title: Oppfølging etter hjernesvulst hos barn og ungdom, kartlegging av status, forbedringsområder og sykepleiers rolle

(Follow-up care of child and adolescent survivors of brain tumors: Current practice and unmet needs – from the perspectives of the survivors, their families and nurses)

Project coordinators: Ellen Ruud OUS and Hanne Cathrine Lie OUS

Investigators: Anette Ålykkja, OUS and HiOA

Collaborators: Tone Rustøen, OUS and UiO; Torun Vatne, Frambu; Live Korsvold, OUS; Arnstein Finset, UiO

Synopsis: The aim is to describe current follow-up care practices of childhood brain tumor survivors and their families, and identify met and unmet needs in the current system from the survivors’, their parents’ and nurses’ perspectives. An intervention aimed at improving communication regarding the survivors’ symptoms and worries within the family and with specialist nurses at follow-up consultations using an electronic communication tool (SISOM) will be piloted.

Funding: In progress

Project status: Planned