Background

The young child’s experiences of living with cancer are crucial to providing evidence based care. The aim of this study was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis.

Methods

Children and parents were interviewed at four time points and questionnaire data collected at five time points over a three year period from diagnosis. A qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. Mixed methods were used to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. These codes were then used to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

Results

The everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Children living with cancer want to be participatory in their care and to have access to their parents as protectors. They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society.

Conclusions

The results of this study reveal emerging issues of survivorship that need to be addressed as young children learn to live an everyday life with cancer and the effects of its treatment. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and wellbeing.