Parents' accounts of obtaining a diagnosis of childhood cancer

Background Quick diagnosis and treatment of cancers is a UK government prio rity. However, the process of arriving at a diagnosis of childhood cancer h as been neglected in comparison with the attention given to cancers in adul ts. We investigated parents' narratives about the period before their child 's diagnosis. Methods We undertook semistructured interviews with 20 parents whose childr en (aged 4-18 years) had a confirmed diagnosis of cancer or brain tumour. A ll interviews were recorded and fully transcribed. Dates of consultations a nd investigations were noted from children's medical records. Data were ana lysed by the constant comparison method. Findings The time before diagnosis is very significant for parents and migh t affect their adaptation and reaction to their child's diagnosis. Parents were first alerted to their child's illness by a range of signs and symptom s, and by behavioural and affective changes, These early symptoms were ofte n vague, non-specific, and common, and some older children were reluctant t o disclose symptoms. Ten families' accounts of this period before diagnosis included a dispute with doctors. Disagreements between parents and doctors about the seriousness of children's symptoms and the need for investigatio ns occurred in both primary and secondary care. Some parents felt that doct ors discounted their special knowledge of their child. Interpretation Parents' accounts offer valuable insights into their experie nces 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, gener al practitioners, hospital specialists, and type of cancer. Our findings ha ve important implications for policy, practice, and research, and for the m anagement of childhood illnesses.