Parental Narratives of health-related quality of life in children with leukaemia in the second week after diagnosis: The Ecocultural Family Interview-Cancer.

The family system is an important and proximal factor for children with cancer. Parents are facing wrenching changes in their lives. Nonetheless, most reports in the literature on short- and long-term psycho-social consequences of childhood cancer on children and their families are drawn from questionnaires completed by the parents and/or doctors and nurses. In this report, we use a narrative, guided conversational method, the Ecocultural Family Interview-Cancer, to provide evidence from parents in their own voices, concerning their experiences early after the diagnosis, during the first hospitalization. We identified 98 topics and themes from 128 interviews with parents of children with leukaemia at first hospitalization, and then combined those into a smaller set of 11 psychometrically robust global dimensions. Spearman inter-rater reliability in identifying items for these dimensions was high. The EFI is a promising research tool for systematic mixed method inquiry into family experiences and accommodations during difficult health crises.