Parentsʹ accounts of obtaining a diagnosis of childhood cancer

Background Quick diagnosis and treatment of cancers is a UK government priority. However, the process of arriving at a diagnosis of childhood cancer has been neglected in comparison with the attention given to cancers in adults. We investigated parentsʹ narratives about the period before their childʹs diagnosis. Methods We undertook semistructured interviews with 20 parents whose children (aged 4–18 years) had a confirmed diagnosis of cancer or brain tumour. All interviews were recorded and fully transcribed. Dates of consultations and investigations were noted from childrenʹs medical records. Data were analysed by the constant comparison method. Findings The time before diagnosis is very significant for parents and might affect their adaptation and reaction to their childʹs diagnosis. Parents were first alerted to their childʹs illness by a range of signs and symptoms, and by behavioural and affective changes. These early symptoms were often vague, non-specific, and common, and some older children were reluctant to disclose symptoms. Ten familiesʹ accounts of this period before diagnosis included a dispute with doctors. Disagreements between parents and doctors about the seriousness of childrenʹs symptoms and the need for investigations occurred in both primary and secondary care. Some parents felt that doctors discounted their special knowledge of their child. Interpretation Parentsʹ accounts offer valuable insights into their experiences of obtaining a diagnosis of childhood cancer and into possible sources of delays in this complex process. If delays are to be avoided or reduced, attention must be given to the different roles of parents, children, general practitioners, hospital specialists, and type of cancer. Our findings have important implications for policy, practice, and research, and for the management of childhood illnesses.