Parents' management of their child's hydrocephalus and shunt

Introduction Shunts are the main treatment for hydrocephalus. When shunts malfunction the consequences are serious and can be life threatening. Identifying shunt malfunction requires effective parent-professional collaboration: parents need to recognise and respond appropriately to the symptoms of shunt malfunction in their child; professionals need to integrate parents' information about their child's symptoms during clinical decision-making and diagnosis. This thesis explored parents' experiences of living with a child with hydrocephalus and parents' and professionals' contribution to the diagnosis of shunt malfunction in acute hospital admissions. Methods Two exploratory studies were undertaken using interview and observational methods to elicit data. The framework approach and conversation analysis were used to analyse and interpret data. Findings Parents gain considerable skills and knowledge about their child's health needs. They are able to distinguish between symptoms indicating shunt problems from other childhood illnesses. Deciding where or when to seek help is influenced by minimising disruption for the whole family and prior experiences of healthcare services. Parents' perceive that their expertise is not always valued by health professionals and not always used to make clinical decisions. Analysis of parent-professional interactions suggests health professionals' involvement of parents' in decisions about their child's care is variable. There was evidence of some collaborative practice but tensions were evident within the interactions when parents disagreed with professionals' judgments. Conclusion A collaborative paradigm is appropriate when engaging with expert parents living with a child with hydrocephalus. The challenge for health professionals is to integrate parents' expertise of their child's presenting symptoms within their clinical assessment when planning the child's care.