Parents' experiences of living with a child with hydrocephalus: A cross-sectional interview-based study

Background: Shunts, the main treatment for hydrocephalus, are problematic because they frequently malfunction. Detecting shunt malfunction is challenging because symptoms are similar to those of common childhood illnesses, particularly viral infections. Parents are responsible for identifying shunt malfunction and responding accordingly. Understanding parents' experiences has the potential to improve parent-professional collaboration and the management of the child's condition. Aim: To explore parents' experiences of living with a child with hydrocephalus and their decisions when they suspect shunt malfunction. Design and methods: A cross-sectional interview-based survey using qualitative methods was undertaken. Twenty-five parents participated in the interviews. Framework approach underpinned data analysis. Findings: Three concepts, 'uncertainty', 'developing expertise', and 'a normal life', were identified. These concepts were dynamic in nature as parents learned through experience, adapted to changes in their child's health status and made decisions about their needs. Uncertainty because of the unpredictability and life-threatening nature of shunt malfunction dominated parents' accounts. Through experience, parents learned to differentiate between symptoms that suggested a shunt problem and those of other childhood illnesses, but perceived their expertise was not always valued by health professionals or used to inform clinical decisions. Decisions about where or when to seek advice related to prior experiences of health-care services and minimizing disruption for the whole family. Conclusion: Parents can recognize illness symptoms suggestive of shunt malfunction and want to collaborate with health professionals about the management of their child's condition. Collaboration with parents requires health professionals to listen to parents' concerns and value their experiences.