Children's behaviour following diagnosis of acute lymphoblastic leukaemia: A qualitative longitudinal study

Survival rates for children with cancer have improved significantly, but lengthy and painful treatments compromise the quality of life of children and their families. The aim of this article is to describe children's behaviour and coping over the 2- or 3-year-course of treatment. We interviewed 32 mothers of children newly diagnosed with Acute Lymphoblastic Leukaemia (ALL) shortly following diagnosis, 1 and 2 years later. Thematic analysis was used to extract themes related to adjustment and behaviour. The results were organized separately for children in three age groups: 0-4 years, 5-9 years and 10-14 years. Mothers described children in the 0-4-year age group as adjusting well, and attributed this to their limited understanding and ability to integrate treatments into normal life. Children in the 5-9-year group were adjusting less well, experiencing social problems and worries about appearance. Older children (10-14 years) adjusted least well. Many withdrew socially and were concerned about the need to look and feel normal. These findings will be useful for parents and clinicians in identifying typical behaviours of children coping with ALL. They also have implications for the development of child-centred age-specific measures of quality of life in children treated for ALL.