Iori Sato

Development of the Japanese version of the Pediatric Quality of Life Inventory™ Brain Tumor Module

BackgroundThe Pediatric Quality of Life Inventory™ (PedsQL™) is a widely-used modular instrument for measuring health-related quality of life in children aged 2 to 18 years. The PedsQL™ Brain Tumor Module is comprised of six scales: Cognitive Problems, Pain and Hurt, Movement and Balance, Procedural Anxiety, Nausea, and Worry. In the present study, we developed the Japanese version of the PedsQL™ Brain Tumor Module and investigated its feasibility, reliability, and validity among Japanese children and their parents.MethodsTranslation equivalence and content validity were verified using the standard back-translation method and cognitive debriefing tests. Participants were recruited from 6 hospitals in Japan and the Childrens Cancer Association of Japan, and questionnaires were completed by 137 children with brain tumors and 166 parents. Feasibility of the questionnaire was determined based on the amount of time required to complete the form and the percentage of missing values. Internal consistency was assessed using Cronbachs coefficient alpha. Test-retest reliability was assessed by retesting 22 children and 27 parents. Factorial validity was verified by exploratory factor analyses. Known-groups validity was described with regard to whole brain irradiation, developmental impairment, infratentorial tumors, paresis, and concurrent chemotherapy. Convergent and discriminant validity were determined using Generic Core Scales and State-Trait Anxiety Inventory for children.ResultsInternal consistency was relatively high for all scales (Cronbachs coefficient alpha > 0.70) except the Pain and Hurt scale for the child-report, and sufficient test-retest reliability was demonstrated for all scales (intraclass correlation coefficient = 0.45-0.95). Factorial validity was supported through exploratory factor analysis (factor-item correlation = 0.33-0.96 for children, 0.55-1.00 for parents). Evaluation of known-groups validity confirmed that the Cognitive Problems scale was sensitive for developmental impairment, the Movement and Balance scale for infratentorial tumors or paresis, and the Nausea scale for a patient currently undergoing chemotherapy. Convergent and discriminant validity with the PedsQL™ Generic Core Scales and State-Trait Anxiety Inventory for children were acceptable.ConclusionsThe Japanese version of the PedsQL™ Brain Tumor Module is suitable for assessing health-related quality of life in children with brain tumors in clinical trials and research studies.

Impact of late effects on health-related quality of life in survivors of pediatric brain tumors: motility disturbance of limb(s), seizure, ocular/visual impairment, endocrine abnormality, and higher brain dysfunction.

Background: Survivors of pediatric brain tumors are often affected by late effects, such as motility disturbance of limb(s), seizure, ocular/visual impairment, endocrine abnormality, and higher brain dysfunction, resulting from the disease and its treatment. Appropriate provision of supportive care will require understanding the effects of these experiences on survivors’ health-related quality of life (HRQOL). Objective: The aim of this study was to identify the relationships between late effects and specific aspects of the HRQOL of pediatric brain tumor survivors. Methods: We distributed questionnaires for measuring HRQOL to 138 survivors and their parents at 8 hospitals and 1 clinic in Japan and simultaneously surveyed late effects using information provided by the survivors’ attending physicians. We compared the HRQOL of survivors with and survivors without specific late effects. Results: A total of 106 survivors and their parents returned the questionnaires to the researchers. The HRQOL of survivors 18 years or older was negatively affected by all 5 late effects, indicating that their higher impairment was associated with diminished HRQOL. The HRQOL of survivors aged 12 to 17 years was negatively affected by 2 late effects (ocular/visual impairment and motility disturbance of the limbs). A part of the HRQOL subdomain (motor and cognitive functioning) of survivors aged 12 to 17 years was positively related to ocular/visual impairment. Conclusions: Five late effects influenced the HRQOL of pediatric brain tumor survivors. Implications for Practice: Nurses and other health professionals should provide specific care designed to support aspects of HRQOL affected by late effects. For example, survivors with ocular/visual impairment may be expected to require additional emotional support, and those with seizures or endocrine abnormalities may be expected to require additional support for sleep disorders.

Support for school reentry and relationships between children with cancer, peers, and teachers

Returning to school after a cancer diagnosis can be socially challenging for children with cancer. This study investigated the form of support for school reentry and the associations with social support from peers and teachers.

The Experience of Japanese Adolescents and Young Adults After Losing Siblings to Childhood Cancer: Three Types of Narratives

The aim of this study was to describe Japanese adolescents’ and young adults’ experiences after losing siblings to childhood cancer. A conceptual framework of the transition and analysis based on narrative method were adopted from qualitative data from 6 Japanese adolescents and young adults who had lost their siblings to childhood cancer. It was revealed that the participants’ psychological experience after the sibling’s death was directed by their perceptions of their mothers’ responses to bereavement. We also found that the psychological distance between participants and their mothers could be an important factor in enabling transition into mourning and in orienting the lost sibling in their mind. The stories obtained from these 6 participants were categorized into the following 3 types of narratives: “Mother in another world and the sibling who became a god,” “Return of the loving mother and the sibling as savior,” and “The poor mother and the sibling who needs my help to carry on her legacy.” This typology will serve as a framework for grief care and future research.

Development of the Japanese version of the Pediatric Quality of Life Inventory Transplant Module

Health‐related quality of life (HRQOL) is an important outcome in pediatric solid organ transplantation. Considering the emerging problems after transplantation, an evaluation of transplant‐specific aspects of HRQOL is essential, but no validated HRQOL measure is available in Japan. The aim of this study was therefore to develop the Japanese version of the Pediatric Quality of Life Inventory™ (PedsQL) Transplant Module Child Self‐Report and to investigate its feasibility, reliability, and validity.

Physio-psychological Burdens and Social Restrictions on Parents of Children With Technology Dependency are Associated With Care Coordination by Nurses

Purpose To determine the association between parental care burdens and care coordination provided by nurses for children with technology dependency, specifically regarding physio‐psychological burdens and social restrictions. Design and Methods A cross‐sectional study was conducted between October and November 2015. Participants were recruited via home‐visit nursing stations, social worker offices, and special‐needs schools. A total of 246 parents of children with technology dependency completed anonymous self‐report questionnaires. Parental burden was measured using the Zarit Burden Interview. Care coordination for children with technology dependency was examined using items extracted from focus group interviews involving three nursing administrators at home‐visit nursing stations, two social workers, and a coordinator of school education for children with special health care needs. Multiple regression analysis was performed to examine the relationship between parental burden and care coordination among 172 parents who contracted with visiting nurses. Results Parents and children with nursing support were significantly younger and had higher medical care needs and higher parental role strain than those without nursing support. Care coordination from nurses predicted reduced parental burden, role strain, and personal strain (&bgr; = −0.247, p = 0.002; &bgr; = −0.272, p = 0.001; &bgr; = −0.221, p = 0.009, respectively). Conclusion Nurses’ care coordination appears to be associated with a reduction in parents’ care burden resulting from home medical care of children with technology dependency, especially the social restrictions and physio‐psychological burdens. Practice Implications Strengthening nursing functioning as care coordinators may contribute to reducing care burdens for parents of children with technology dependency. HighlightsParents of children with technology dependency (CTD) face a heavy care burden.Care coordination by nurses is associated with a reduction in parents’ care burden.Nurses’ role as coordinators affects social role of parents of CTD.

Family-to-work spillover and appraisals of caregiving by employed women caring for their elderly parents in Japan

We examined the differences in family-to-work spillover between employed women who did and did not have caregiving responsibilities for elderly parents and the relationship between family-to-work spillover and negative and positive appraisals of caregiving using moderation analysis. A cross-sectional survey was conducted with middle-aged employed women (age ≥40 years) from four large companies. Negative and positive family-to-work spillover (FWNS and FWPS, respectively) and negative and positive appraisals of caregiving were measured. Data from 386 non-caregivers and 82 caregivers were analyzed using Fisher’s exact tests, Welch’s t-tests, and hierarchical multiple regression. Results showed that FWNS was higher in caregivers than in non-caregivers, while there was no significant difference in FWPS. Caregiver “fulfillment from the caregiving role” (a subscale of positive appraisal) buffered the effects of caregiver “feelings of social restriction” (a subscale of negative appraisal) on FWNS. On the other hand, caregiver “commitment to caregiving tasks” (another positive subscale) intensified the effects of “feelings of social restriction” on FWNS. However, there was no relationship between negative and positive appraisals of caregiving and FWPS. These findings suggest that both negative and positive appraisals of caregiving are important contributors to FWNS among employed women caring for their parents.

Premenstrual Distress Among Japanese High School Students: Self-Care Strategies and Associated Physical and Psychosocial Factors

This study aimed to identify self-care strategies and assess physical and psychosocial factors associated with premenstrual distress among high school students. A cross-sectional survey of 217 adolescent girls aged 15 to 18 years was conducted in October 2009. Most (84.3 percent) had at least one or more symptoms of premenstrual distress. Premenstrual distress interfered with normal school activity in 51.2 percent. Most participants (57.1 percent) did not perform any self-care strategies for premenstrual distress. A hierarchical multiple linear regression analysis was conducted. Comprehension of one’s own physical and mental states during premenstrual phases mediated the relationship between neuroticism and premenstrual distress. Activity restrictions due to menstrual distress mediated the relationship between the family’s understanding of one’s behavior during premenstrual phases and premenstrual distress. Findings suggest that, even if girls have neuroticism, it will be important to teach them to address the comprehension of one’s own physical and mental states so that perceptions of both premenstruation and menstruation become more positive. Findings also suggest that the family’s understanding was associated with alleviation of premenstrual distress. This study suggests the need for education to help adolescent girls and their families manage premenstrual distress and increase awareness of the benefit of managing its associated symptoms.

Quality of life after living donor liver transplant for biliary atresia in Japan

Health‐related quality of life (HRQOL) is an important outcome in solid organ transplantation. This study evaluated and explored the factors of generic and transplant‐specific HRQOL in Japanese pediatric and adolescent patients with biliary atresia (BA) after living donor liver transplant (LDLT).

Factors influencing mother–child communication about fathers with neurobehavioural sequelae after brain injury

ABSTRACT Objective: The present study clarified factors related to mother–child communication openness when fathers suffer neurobehavioural sequelae after stroke or traumatic brain injury. Research design: A cross-sectional study using self-report anonymous questionnaires was conducted. Methods and procedures: Forty-one mothers with 6–22-year-old children participated. The questionnaire examined personal factors (mother’s psychological distress), social/family factors (family support functioning), illness-related factors (father’s time at home and neurobehavioural sequelae severity) and mother’s perceived level of open communication. Multiple regression was used to analyse factors related to mother–child communication openness. Results: Mother–child open communication was explained by family support functioning (β = 0.449), father’s time at home (β = –0.325) and mother’s psychological distress (β = –0.303). Neurobehavioural sequelae severity was not associated with mother–child open communication. Conclusions: Personal, social/family and illness-related factors were related to mother–child communication about paternal illness. Professionals should promote optimal family support functioning, connect families with external resources and assess families’ interaction processes.