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

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.

Mothers' Experiences about Decisions to Use Children's Proton Beam Therapy.

Recently, proton beam therapy has been recommended in radiation therapy for child-hood cancer. However, facilities for children are limited, and parents who choose this treatment for their children face a variety of challenges. This study reveals mothers' experiences about the decision to use the aforementioned therapy. A semi-structured interview was conducted with 16 mothers of children who received proton beam therapy in Japan, and a grounded theory approach was adopted. The results revealed that mothers were very worried about late complications concerning their children due to radiation. While the mothers strongly expected proton beam therapy to reduce the risk of late complications, they felt uncertainty and anxiety throughout the entire decision-making process. Despite having to deal with their feelings, they had to transfer to another hospital and prepare support for their children to begin treatment, and this put a lot of strain on them. From decision-making to start of treatment, these emotional fluctuations and the need for psychological support became apparent.

Depression and health-related quality of life after discharge and associated factors in childhood cancer patients in Japan.

We identified the prevalence of depression and quality of life (QOL) of Japanese children with childhood cancer after discharge using the Birleson Depression Self-rating Scale for Children (DSRS-C) and the Pediatric Quality of Life Inventory (PedsQL). Subjects were 118 caregivers who raised children ages 2-18 with childhood cancer; subjects resided in suburban districts of Japan and completed instruments after their children were discharged. Multiple regression analysis of data collected from 105 respondents revealed that lower PedsQL scores correlated with more problems in life at school and at home, an increased frequency of hospital visits, less cooperation within the family, and higher DSRS-C scores. To ensure the QOL of children with childhood cancer, outpatient nurses need to encourage children to psychosocially adapt after discharge, periodically screen children during outpatient treatment using instruments such as the DSRS-C, and conduct preventive interventions for children who meet screening criteria and their families before they suffer from adaptation disorders and offer multilateral psychosocial assistance in cooperation with a multidisciplinary care team.