Parental readiness for the transition to adulthood of children with a chronic disease

Abstract

Purpose: To investigate parental readiness for their child's transition to adulthood among pediatric patients with chronic disease in Japan.

Design and methods: In this cross-sectional study, parents of children with chronic diseases attending a pediatric outpatient hospital completed an anonymous self-administered questionnaire to investigate demographics and parental readiness for children's transition to adulthood. Logistic regression analysis was conducted to determine whether parents' readiness differed according to their children's disease types.

Results: A total of 179 parents responded to the survey. Of these, 60% confirmed awareness and knowledge of their children's disease and treatment with their children. They also thought and accepted that there would be a time when their children would move from pediatrics to an adult department. More than half of parents had discussions with their children about the children's interests and would discuss with each other if their children's choice differed from the parents' opinion. <20% of parents had gathered information about the transition and made sure their children saw the outpatient clinic alone or encouraged them to write a record of their visits. The readiness of parents of children with diabetes and of children with cardiovascular disease was higher than those of children with cancer and blood diseases on several items.

Conclusions: Parental readiness to support their children's transitions did not progress well, suggesting the need for relevant interventions.

Practice implications: Children and parents should be supported in acquiring information about the transition to adulthood and in implementing child-oriented outpatient visits.

Keywords: Children with chronic disease; Parental readiness; Transition to adult care; Transition to adulthood.