Aims To explore parents’ involvement in the care of their child’s hydrocephalus and the ways in which parents and professionals collaborate when assessing a child with potential shunt malfunction.

Methods Two exploratory studies were undertaken using interview and observational methods.

Findings Although there is co-operation with parents, conflicts emerged when parents disagreed with the professionals’ opinions. Parents also perceived that their expertise was not always valued by professionals and not used to inform decisions about care.

Conclusion Despite identifying collaboration with parents as the desired care model, health professionals find integrating parents’ expertise on their child’s condition challenging during assessment and when planning care.