Internal struggle for diagnosis disclosure of childhood cancer to children among Japanese parents; Comparison of the results from cross-sectional studies conducted in the last two decades

Abstract

We conducted this study to reveal the historical changes of parents' perception of diagnosis disclosure of childhood cancer to children. Parents having school children were recruited for questionnaire surveys conducted in 1998, 2008 and 2018. They were questioned about their perception of cancer, cancer diagnosis disclosure to children and advantages and disadvantages of the diagnosis disclosure. The historical changes were analyzed by comparing the responses at each survey with a Chi-square test and a residual analysis. Parents perceiving “cancer is incurable” decreased from 40.0% (an adjusted standardized residual [ASR] = 12.002 P < 0.01) in 1998 to 10.4% (ASR = -6.334, P < 0.01) in 2018. Parents agreeing to disclose cancer diagnosis increased from 34.5% (ASR = −3.549, P < 0.01) in 1998 to 53.7% (ASR = 5.546, P < 0.01) in 2018. In 2018, more parents chose “avoiding secrets” (57.7%, ASR = 2.430, P < 0.05) and “respecting children's rights” (54.6%, ASR = 5.966, P < 0.01) for the advantages. Many parents manifested concerns on anxiety and mental shock of children irrespective of the survey year. Parents changed their perception of diagnosis disclosure of childhood cancer to children in the last 20 years.