OBJECTIVES: to investigate how parents perceive a diagnosis of lymphoid leukemia in their children. METHODS: qualitative research based on the sociological theory of social representations was used. Data was gathered by way of semi-structured interviews. Twenty parents of children diagnosed as having acute lymphoid leukemia (ALL). The content analysis technique was used to analyze data. Data analysis was guided by the principles of bioethics and humane care. RESULTS: the parents clearly recalled the progression of symptoms up to diagnosis. The word leukemia was associated with cancer and death. Difficulties related to listening to the symptoms, the specific clinical features of leukemia and the referral system were the main reasons for delay in arriving at a final diagnosis. The parents highlighted the need to move about a lot from one place to another, the lack of resolution, unnecessary costs, emotional strain and the slowness of the health services. CONCLUSIONS: cancer brings with out cultural values concerning death and these bear greater weight when a child is involved. The search for a diagnosis of leukemia by parents is a good example of the tortuous path they have to tread when what is wrong with their children is not something that bears the label of a "common" disease.
Precursor cell lymphoblastic leukemia-lymphoma; Early diagnosis; Humanization of assistance