What Was on the Parents' Minds? Changes Over Time in Topics of Person-Centred Information for Mothers and Fathers of Children with Cancer.

Abstract

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).