How Parents of Adolescents and Young Adults with Biliary Atresia Surviving with Native Livers Transfer the Responsibility of Medical Treatment to Their Children in Japan.

BACKGROUND: This study examines how the parents of adolescents and young adults with biliary atresia, surviving with their native livers, transfer medical treatment responsibility to their children, and how becoming a living liver transplant donor affects this process. The basis for the study was that becoming a living liver transplant donor may influence the transfer of responsibility. METHODS: A qualitative, descriptive design was employed using a modified grounded theory approach. Data were collected from eight parents from November 2016 to August 2017 through semi-structured interviews conducted in two Japanese hospitals. Interpretive analysis from the viewpoint of the analytical theme and analytical focus person was conducted, resulting in a diagram and storyline explaining the process. FINDINGS: Five categories were generated from one father and seven mothers (aged 40-60 years) of outpatients (aged 17-25 years): parental ability to cherish the child's "now" (live in the moment); put the brakes on their child's life; learn as they go; leave the child's life to the child; and openly express reservations about becoming a living liver transplant donor for their child. DISCUSSION: Parental transfer of responsibility for treatment may be influenced by close-knit parent-child relationships, perception of the child's growth, and parental concern about becoming a living donor. APPLICATION TO PRACTICE: Care providers should understand parent-child relationships and the parents' concerns about becoming living donors, thereby enabling them to recognize that medical treatment control must be relinquished to foster children's autonomy as adults.

Observed Progression of Parents' Understanding of Preterm Infants' Behavioral Signs at 33 to 35 Weeks Corrected Age.

BACKGROUND: Interventions aimed at improving parental understanding of preterm infants' behavioral signs have drawn increased attention in recent years. However, there are limited data regarding parents' actual perceptions of infants' behavior during parent-infant interactions while infants are in a light-sleep state. PURPOSES: (1) To describe parental perceptions of infants' behavior at 33 to 35 weeks' corrected age during light-sleep and (2) to identify changes in parental perceptions of preterm infants' behavior over time. METHODS: This study used a qualitative, longitudinal design based on observations and interviews. Three sets of parents and their infants born between 29 and 30 weeks' gestational age were observed up to 3 times during light sleep states when the infants were 33 to 35 weeks' corrected age. Parents were interviewed regarding their perceptions of infant behavior/growth once at the time of observation and once more within 2 weeks of the final observation. The findings are based on the observation of parents' perception-driven interactions with infants. RESULTS: Four themes emerged describing the transition of parental perception that progresses to gain a better understanding of their infant's behavior through repeated interaction. IMPLICATIONS FOR PRACTICE: The findings of this study inform caregivers in neonatal intensive care units regarding the unique experience of parent-infant dyads. This knowledge can help promote family-centered developmental care efforts in neonatal intensive care units. IMPLICATIONS FOR RESEARCH: Further research should focus on studying a larger sample group to confirm the findings and refining strategies to incorporate the findings to enhance neonatal intensive care unit care.

How Japanese nurses participate in decision making: Infants with congenital life-threatening conditions.

BACKGROUND: In Japan, owing to the progress in medical technology, more children with congenital life-threatening conditions survive than ever before. Nurses who care for these children may also influence decision making in difficult situations. AIM: We aimed to describe Japanese nurses' approach toward medical decision making when caring for families of infants with congenital life-threatening conditions. Frequently, these nurses must care for and support parents with ambivalent feelings. DESIGN: Qualitative descriptive study. METHODS: Participants were recruited from neonatal intensive care unit and paediatric wards at a university hospital in Japan from June to July 2016. Data were collected using semi-structured interviews and qualitatively analysed. RESULTS: Japanese nurses described these situations as "decision making regarding the child's medical care" and "daily life at hospitals." The themes included support of parents and the choices made about their children, nurses giving or holding their opinions about care choices, or withholding their opinions during decision-making events. The narratives included 5 focus areas: the parents; the children, the family as a whole; relationship between families and health care providers; and the effect of the clinical environment on the children and families. CONCLUSION: When caring for children with life-threatening congenital conditions, nurses should develop supportive relationships with parents and contribute to the clinical decision-making process with empathy and based on the most current research data.

Stress and coping in Japanese mothers whose infants required congenital heart disease surgery.

BACKGROUND: With the growing number of severe congenital heart disease (CHD) surgeries, some hospitals in Japan are experiencing difficulty meeting the demand for CHD surgery. As a result, CHD surgery preparation is difficult for mothers of these infants. AIMS: To examine the stress and coping of mothers whose infants needed CHD surgery and to identify the factors that influenced maternal coping. METHODS: Semistructured interviews were conducted with 11 mothers whose infants had undergone CHD surgery. Qualitative analyses of transcribed interviews were performed. RESULTS: The coping of mothers for surgery began when mothers received news of their infant's CHD diagnosis. Maternal stress appraisal and coping changed as surgery approached. In particular, maternal coping was influenced by diagnosis event, symptoms of their child, anticipated number of surgeries, presence of chromosomal abnormality, and infant age. CONCLUSION: The stressors and coping challenges of mothers whose infants needed CHD surgery changed as the surgery date approached, and these were influenced by 5 factors.

Maternal coping with the prospect of liver transplant among their school-age children.

The purpose of the current study was to describe the following: maternal coping with the prospect of becoming the living-donor liver transplant for their child; the daily lives of school-age children surviving biliary atresia with their native liver; and to explore the relationship between these individuals. Semistructured interviews were conducted with 6 school-age children surviving biliary atresia with their native liver and their mothers. The interviews were conducted from June to August 2014, and a qualitative content analysis was used. Results showed that mothers realized a possible need for transplantation in the future, which contributes to emotional and practical uncertainties. The mothers coexisted with this uncertainty and preferred to use a buffering strategy. In contrast, the children did not consider their illness and future and did not adhere to a therapeutic regimen. It is suggested that living with uncertainty about the health and survival of their children is advantageous for mothers. However, problems related to the psychosocial aspect and child's adherence may occur in the future. In addition, problem-solving coping strategies for mothers and the independence of chronically ill children with liver disease should be promoted.

Health-related and diabetes-related quality of life in Japanese children and adolescents with type 1 and type 2 diabetes.

BACKGROUND: The aim of this study was to assess (i) the health-related quality of life (HR-QOL) of primary, junior and high school children with type 1 and type 2 diabetes and to compare it with that of healthy school children; and (ii) to compare the diabetes-related QOL (DR-QOL) and the QOL of parents of children with diabetes, between type 1 and type 2 diabetes in Japan. METHODS: Overall, 471 patients aged 9-18 years (368 with type 1 and 103 with type 2 diabetes) and their parents were involved. QOL was assessed using a self-administered questionnaire. RESULTS: The total score for HR-QOL of primary and junior school children with type 1 diabetes was significantly higher than that of those with type 2 diabetes and healthy controls. However, there were no significant differences in high school children. Some subscales regarding HR-QOL were significantly lower for children with type 2 diabetes than for children with type 1 diabetes or healthy controls. The DR-QOL of children with type 1 and type 2 diabetes did not significantly differ. The Family Burden and Family Involvement were significantly greater in parents of children with type 1 diabetes. There were significantly positive correlations between HR-QOL and DR-QOL in both groups. In type 1 diabetes only, there were significant negative correlations between glycated hemoglobin and some subscales of the HR-QOL and QOL of parents of children with diabetes, and weak positive correlation between glycated hemoglobin and Family Burden. CONCLUSIONS: The HR-QOL of school children with type 1 diabetes was higher than that of those with type 2 diabetes and healthy school children. The QOL of school children with type 1 diabetes was not impaired.

Title: Health-related and diabetes-related quality of life (QOL) in Japanese children and adolescents with type 1 and type 2 diabetes.

Background: To assess 1) the HR-QOL of primary, junior and high school children with type 1 and type 2 diabetes and to compare them with healthy school children and 2) To compare the DR-QOL and parents' QOL between type 1 and type 2 diabetes in Japan. Methods: Overall, 471 patients aged 9-18 years (368 with type 1 and 103 with type 2 diabetes) and their parents were involved. QOL was assessed by self-administered questionnaire. Results: The total score of HR-QOL for primary and junior school children with type 1 diabetes was significantly higher than that of those with type 2 diabetes and healthy controls. However, there were no significant differences in high school children. Some subscale of HR-QOL were significantly lower for children with type 2 diabetes than for children with type 1 diabetes or healthy controls. The DR-QOL of children with type 1 and type 2 diabetes did not significantly differ. The Family Burden and Family Involvement were significantly greater in parents of children with type 1 diabetes. There were significantly positive correlations between HR-QOL and DR-QOL in both groups. In type 1 diabetes only, there were significant negative correlations between HbA1c and some subscales of the HR-QOL and PDQOL, and weak positive correlation between HbA1c and Family Burden. Conclusions: The HR-QOL of school children with type 1 diabetes was higher than that of those with type 2 diabetes and healthy school children. The QOL of school children with type 1 diabetes was not impaired.

Quality of life of young adults with congenital hypothyroidism.

BACKGROUND: The aim of the present study was to investigate health-related quality of life (HRQOL) and the living conditions of young adults with congenital hypothyroidism (CH) detected on newborn screening. METHOD: Among medical institutions that care for CH patients in Japan and were approached to in the present study, 78 institutions agreed to participate. The World Health Organization Quality of Life-26 (WHO/QOL-26) was used for measurement of HRQOL. CH patients who gave consent after receiving an explanation from their physicians filled in questionnaires at home and sent them by mail. This survey involved 51 CH patients (15 male; 36 female) whose mean age was 21.1 +/- 2.7 years (+/-SD; range, 18-27 years). The data from WHO/QOL-26 forms completed by 43 patients (12 male; 31 female) were compared with those for healthy individuals. RESULTS: Mean WHO/QOL-26 scores were 3.51 +/- 0.43 for male patients and 3.59 +/- 0.42 for female patients, and there were no significant differences between them and healthy individuals (men, 3.32 +/- 0.42; women, 3.35 +/- 0.49). No significant difference was observed between patients and healthy individuals on any domain of the WHO/QOL-26. Their degree of educational attainment was not poor. CONCLUSIONS: The HRQOL of young adults with CH detected on newborn screening was not poor.

Development and validity testing of the revised diabetes self-care inventory for children and adolescents.

Recently, self-care in children and adolescents with type 1 diabetes has changed with regard to both adherence to treatment and self-management. Only one diabetes self-care scale for children and adolescents is used in Japan which lacks reflection on flexible regimens. The aims of this study were to modify and subsequently test the validity of the revised diabetes self-care inventory (R-DSCI) for children and adolescents, and to construct the diabetes self-care model on the R-DSCI, HbA1c, duration of diabetes and age. Based on qualitative secondary analysis of the self-care framework for teenagers and a literature review of diabetes self-care instruments, the items concerning insulin injection and meal planning were modified from the original DSCI and new items concerning negotiation with parents and others were added. The participants in the validity testing were 122 children and adolescents with type 1 diabetes, 50.8% were girls, aged 9-18 years, mean HbA1c of 7.9%. The final version of the R-DSCI was composed of 41 items. Eight factors, which explained 40.9% of the variance, were identified using the varimax method; Cronbach's alpha for the 41 items was 0.79. The diabetes self-care model showed a negative direct effect of "diabetes self-care practice" on HbA1c (P = 0.004), and the negative indirect effect of "support and perception of life with diabetes" on HbA1c through "diabetes self-care practice" (P = 0.002; estimated effect - 0.21). In addition, "independent self-care behavior" was directly affected by age (P < 0.001). The R-DSCI should be useful for clinicians and researchers to assess the self-management in children and adolescents.

Effects of bodyweight on health-related quality of life in school-aged children and adolescents.

BACKGROUND: The purpose of the present study was to investigate the effects of bodyweight on health-related quality of life (QOL) in children. METHODS: A questionnaire to assess health-related QOL was developed and completed by 242 primary school children and 180 junior high school students in Morioka, Japan. Subjects were classified by obesity index into three groups as follows: underweight, /=+20% (n = 55). The overall QOL score and the score of each domain were compared among the three groups and in each gender. RESULTS: Overall QOL scores did not differ significantly among the three groups. The scores for the domain of 'strength, diligence and self-esteem' in the underweight and overweight groups were significantly lower than those for the normal-weight group overall and for girls (P < 0.01). Scores for the 'school' domain in the underweight group were significantly lower than those for the overweight group overall and for boys (P < 0.05). CONCLUSIONS: Children, except those of normal bodyweight, have low scores in some domains of health-related QOL, suggesting the importance of considering the effects of bodyweight on QOL in programs aimed at further understanding under- or overweight children and adolescents.