Social support needs of caregivers rearing children with severe motor and intellectual disabilities at home in Japan.

Background: In Japan, recently, the number of children with severe motor and intellectual disabilities (SMID) is steadily increasing. Caregivers such as parents and family members are struggling with how to live with their children at home and in the community after discharge. Objective: The current study aimed to explore the social support needs faced by caregivers while rearing children with SMID in order to identify effective means of social support in Japan. Methods: We conducted a cross-sectional survey of the primary caregivers of children with SMID at home through special-needs elementary, junior high, and senior high schools nationwide, using a self-administered, anonymous questionnaire to investigate the actual social support needs of the caregivers. All statements of social support need were coded using Krippendorff content analysis. Results: Questionnaire returns were obtained from 1,176 families, and the descriptions of 1,173 families were included in the analysis. The results of the analysis showed that the needs of the caregivers consisted of seven categories. Conclusions: The social support needs expressed by the caregivers are necessary findings for Japan today, both for the soft side, such as the development of local systems and regulations to support these families, and for the hard side, such as the increase and improvement of facilities and equipment.

Development and validation of a Japanese version of The Quality of Discharge Teaching Scale-Parent Form (JQDTS-PF): A cross-sectional observational study.

BACKGROUND: Advances in medical care have enabled home treatment and advanced medical care for children with chronic illnesses. Nurses are not only required to teach their caregivers skills but also understand the families' needs and identify their anxieties in discharge teaching. However, no measure is currently available in Japan to evaluate the quality of discharge teaching provided by nurses. Therefore, this study aimed to develop a Japanese version of the Quality of Discharge Teaching Scale Parent-Form (JQDTS-PF) developed by Weiss et al. METHODS: A Japanese version of the scale was created after obtaining permission from the original author. The questionnaire was then distributed to caregivers of children discharged from hospitals in Japan who required some form of medical care after discharge. FINDINGS: The study population comprised 113 respondents (response rate: 93.3%). The reliability of the scale was 0.88 for "need," 0.86 for "receive," and 0.93 for "delivery." Significant positive correlations were found between the JQDTS-PF subscale and the Japanese version of Readiness for Hospital Discharge Scale (JRHDS-PF). Significant correlations were also found between child and family characteristics and subscales of the JQDTS-PF. DISCUSSION: The developed Japanese version of the scale was found to be sufficiently reliable. Validity of the scale was also sufficiently confirmed by correlation analysis, which yielded results similar to those of previous studies. APPLICATION TO PRACTICE: This scale would be useful in improving and evaluating the quality of discharge teaching by nurses in Japan in the future.

Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home.

Background: The empowerment of families raising children with disabilities (CWD) is crucial in maintaining their health. We developed an evidence-based, family empowerment intervention program focusing on social resource utilization and reducing care burden. Objective: This study aimed to determine the program's effectiveness in promoting family empowerment. Methods: We compared an intervention group that started the online intervention program a week after initial evaluation and a group that received delayed intervention (waitlist-controlled group) at three time points: initial (T1), post-course (T2), and follow-up (T3). The required sample size was 52. Results: There were 60 participants who applied to the program. One participant dropped out due to scheduling issues, and the others were assigned to either the intervention group (n = 29) or the waitlist-controlled group (n = 30). Those who responded to the baseline questionnaire (T1: 26 from the intervention group; 29 from the waitlist-controlled group) comprised the final sample. Among them, 20 members of the intervention group and 20 of the waitlist-controlled group attended all four sessions (completion rates of 77% and 69%, respectively). The attendance rate for sessions 1-4 was 94%, 89%, 81%, and 83%, respectively. The participant numbers in each session ranged from 5 to 18 per month. The baseline outcome score did not differ between the groups. The primary outcome, family empowerment, measured using the family empowerment scale (FES), was significantly higher at T2 for the intervention group than in the waitlist-controlled group and was sustained in the sensitivity analysis. The intervention group's FES, in the family relationships (FA) and relationships with service systems (SS) subdomains, increased significantly, unlike involvement with the community (SP). The intervention group experienced lower care burden and higher self-compassion, especially in the isolation and over-identification items of the self-compassion scale-short form (SCS-SF). The intervention group's FES (total, FA, SS) and SCS-SF (total, common humanity, isolation) changed significantly between T1 and T2, and all, except common humanity, were sustained up to T3; this group's FES (SP) and SCS (negative score, over-identification) changed significantly between T1 and T3. The waitlist-controlled group's FES (total, FA) and SCS (total) changed significantly and were sustained between T2 and T3. Conclusions: The developed intervention program promotes family empowerment in families of CWD. Clinical Trial Registration: This study is registered as a clinical trial in the UMIN Clinical Trials Registry (https://center6.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422, UMIN000044172).

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

BACKGROUND: Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan. METHOD: The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group. DISCUSSION: The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program. TRIAL REGISTRATION: The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021.

Multidisciplinary Approach for Adult Patients With Childhood-Onset Chronic Disease Focusing on Promoting Pediatric to Adult Healthcare Transition Interventions: An Updated Systematic Review.

Introduction: Owing to improved prognosis, the number of adult patients with childhood-onset chronic disease (APCCD) has increased. In this systematic review, we evaluated a multidisciplinary approach toward APCCD, focusing on promoting pediatric to adult healthcare transition interventions and their effects. Methods: We reviewed literature comparing the effects of pediatric to adult healthcare transition interventions in children and adolescents with childhood-onset chronic disease, using PubMed, MEDLINE, and CINAHL, from 2010 to 2021 (keywords: "transition," "children," "intervention," "healthcare," etc.). The inclusion criteria were as follows: (i) original studies, (ii) studies on pediatric to adult healthcare transition interventions in children with chronic disease, (iii) patients including "adolescents" aged 12 and older receiving intervention, and (iv) studies that included the four elements of the PICO model: Patient/ Problem, Intervention, Comparison and Outcome model. Results: After evaluating 678 studies, 16 were selected, comprising topics such as "individual education programs" (n = 6), "group meetings" (n = 6), "active learning using information and communications technology" (n = 2), and "transition clinics" (n = 2). The effects obtained varied, depending on the contents and methods of the intervention. Additionally, there was no evidence of adverse outcomes from these interventions. Conclusions: Pediatric to adult healthcare transition interventions provide systematic support for the transition, patient independence, and social participation; thus, they should be adopted based on their expected effects.

Perceptions and Attitudes Toward Telemedicine by Clinicians and Patients in Japan During the COVID-19 Pandemic.

Background: Coronavirus disease 2019 (COVID-19) has spread rapidly worldwide. In Japan, the spread of COVID-19 was recognized and a state of emergency declared in April 2020. In response, public health interventions, such as discouraging people from leaving their homes unnecessarily, were enacted across the country. Under these circumstances, telemedicine has received a great deal of social attention, and it has become necessary to identify the perceptions of and attitudes toward telemedicine by clinicians and patients and to clarify the problems and advantages. Materials and Methods: Ten clinicians and 10 family members (if the patient was pediatric or elderly, a caregiver was included) were invited to participate in individual private interviews in 2020. All interviews were conducted from October to December 2020 using a semistructured interview guide. All transcripts were coded using thematic content analysis. Results: Four categories from clinicians and five from patients were identified as perceptions of and attitudes toward telemedicine. Both evaluated the usefulness and convenience of telemedicine in the same manner, but there was a large gap in the content under the safety and problem categories. Discussion: It is necessary to disseminate information about the communication techniques unique to telemedicine to doctors and to improve the "operation and introduction" and "communication environment and device settings" when starting or using telemedicine for all patients. Conclusions: The perceptions and attitudes identified in this study will be useful for establishing and developing a telemedicine system in Japan.

Quality of life and associated factors in siblings of children with severe motor and intellectual disabilities: A cross-sectional study.

This study examined quality of life and its associated factors in siblings of children with severe motor and intellectual disabilities in Japan. The participants were 789 siblings of children with a disability and their primary caregivers. We used the Kinder Lebensqualität Fragebogen questionnaire to assess the quality of life of siblings. The mean age of the siblings was 12.21 ± 3.07 years, and the mean quality of life score was 69.63 ± 12.55 points, which is higher than that of the general population of children of the same age. It was revealed that the following factors contributed to higher quality of life scores: a closer relationship with the child with a disability, younger age, the primary caregiver's lower care burden, later birth order of siblings (i.e., younger siblings), higher family empowerment, and female gender of siblings. The relationship with the child with a disability had the strongest influence on siblings' quality of life. Our study suggests the need for nursing interventions that focus on the whole family to enhance siblings' quality of life.

Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities.

OBJECTIVES: Family caregivers raising children with severe motor and intellectual disabilities (SMID) experience the enormous burden of care. The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families. The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan. METHODS: We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools. We assessed the main outcomes using the Family Empowerment Scale (FES). We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment. RESULTS: In total, 1362 primary caregivers were included in our study. Our results show that factors contributing to high FES scores are higher age of the primary caregiver, higher education, greater recognition of regional support, lower childcare burden, higher utilization of home visit services, higher usage of a childcare institution, higher household income, and stronger family bonding. CONCLUSION: Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education, low household income, high childcare burden, and fragile bonding with the family. Second, they should encourage such families to use regional support resources for childcare. That is, policy makers should consider ways to promote home visits and institutional services for the care of children with SMID, aiming especially for the provision of well-coordinated care and services.

Quality of Life and Associated Factors in Japanese Children With Inborn Errors of Metabolism and Their Families

Abstract To reveal the associated factors of quality of life (QoL) in children with inborn errors of metabolism (IEM), their siblings, and their primary caregivers and partners, we conducted an anonymous questionnaire survey in Japan. Descriptive, correlation, and multiple regression analyses were performed. Fifty-six children with IEM, 35 siblings, 143 primary caregivers, and 86 partners completed our questionnaires. There were significant positive correlations between higher QoL in children with IEM and lower disease influence (r »0.46) and higher perceived emotional support (r »0.67). We could not find any associated factor of siblings' QoL. Lower parental distress, higher family empowerment, and higher household income contributed to higher QoL in primary caregivers (adjusted R2 » 0.636). Higher household income, lower anxiety about childrearing, and higher satisfaction in the relationship with the child and entire family contributed to higher QoL of partners (adjusted R2 » 0.398). We concluded that developing effective interventions to improve QoL is needed for the entire family in future outpatient settings.

Difficulties in Daily Life and Associated Factors, and QoL of Children with Inherited Metabolic Disease and Their Parents in Japan: A Literature Review.

To assess the quality of life (QoL) of children in Japan with inborn errors of metabolism (IEM) as well as of their parents, we reviewed 23 previous studies published in Japanese and 1 published in English, focusing on the difficulties they encounter in daily life, the factors associated with these difficulties, and their QoL. We divided the difficulties and associated factors into three developmental stages. At the infant stage, individuals with IEM tend to be at high risk of hypercatabolism. Their parents suffered anxiety and distress because of the child's diet therapy and regarded the parents' support group as an essential presence, particularly given that IEM is a rare disease. At the school-age stage, as their sphere of social relationships expanded, children with IEM became nervous about being compared with healthy children of their own age because of their diet therapy. At the adolescence-to-adulthood stage, the children suffered medically, economically, and socially. Even in the absence of any IEM symptoms, the children's QoL was affected by the demands associated with the metabolic disorder, such as diet and treatment. The psychological health of their caregivers was also poor. To improve the QoL of children with IEM and of their parents, future comprehensive quantitative and qualitative studies of their QoL and of their subjective support needs are required. Additionally, the specific factors related to the QoL of such individuals need to be explored in large population-based statistical studies.

Family empowerment and quality of life of parents raising children with Developmental Disabilities in 78 Japanese families.

OBJECTIVES: The families of these children experience distress both at the time of diagnosis and afterward. A top priority is to understand family empowerment, family function, and family members' quality of life (QoL) and to effectively support these families in Japan. The objective of this study was to assess the actual conditions of families living with children having DDs and to explore the factors associated with family empowerment and parents' QoL. METHODS: We surveyed ninety-three parents (78 mothers, 15 fathers) from 78 families which lived with children with DDs in the capital region of Japan. We assessed two main outcomes using the Japanese versions of the following instruments: Family Empowerment Scale (FES), World Health Organization Quality of Life 26 (WHOQOL26), and other six outcomes. Correlation and multiple regression analyses were conducted. RESULTS: No medication, cooperation with child rearing, assistance from a developmental support center, solved problems related to child rearing, and higher scores in Problem Solving contributed to higher FES scores. Higher WHOQOL26 scores were related to being a full-time housewife, higher self-esteem, no developmental support, a broad emotional support network, higher scores in Problem Solving and Role Function, and lower scores in Affective Reaction and General Function. CONCLUSIONS: We revealed that family empowerment and QoL of parents rearing children with DDs in Japan were affected by various subscales of family function and other family attributes. Effective interventions for improving family empowerment and QoL should be researched in the future.

Analysis of the Issues and Needs of Parents of Children With Developmental Disabilities in Japan Using Focus Group Interviews.

BACKGROUND: The number of Japanese children with developmental disabilities (DDs) has seen a steady increase in recent years. The parents and families of children with DD experience distress both at the time of DD diagnosis and afterward. AIM: This study aimed to elucidate the issues and needs of the parents of children with DD to facilitate the development of effective support strategies necessary to help the family handle the special needs of their child with DD. METHODS: Japanese-speaking parents with children who were aged 3-14 years and currently being treated in a hospital for DDs were invited to participate in one of three focus groups. A trained moderator led each 90-minute audio-recorded group using a semistructured interview guide. All transcripts were coded using thematic content analysis. RESULTS: Six categories of parents' significant issues were identified, with three of the categories classified as critical needs. CONCLUSIONS: The issues and needs identified in this study are useful for developing an effective family support program and a related performance framework. Key concerns include providing relevant information support, providing counseling and consultation support for parents and siblings, and providing resources to children with DD that are necessary to help them deal effectively with their disabilities.

How adolescent Japanese girls arrive at human papilloma virus vaccination: A semistructured interview study.

We examined the human papilloma virus (HPV) vaccination process in adolescent Japanese girls, including protective and obstructive factors to develop and practice enlightenment activities and educational interventions for promoting HPV vaccination to adolescent Japanese girls and their families. We conducted semistructured interviews with 20 adolescent Japanese girls who lived in the wider Tokyo area. To analyze the interview data, we adopted the modified grounded-theory approach. We identified three stages in the vaccination process: first encounter with cervical cancer and HPV vaccine, thoughts about vaccination, and adjustment with parents toward vaccination. The girls "knew" their knowledge and information on cervical cancer and the HPV vaccine from experts, parents, and friends, "considered and discussed" HPV vaccination in their own way or with parents, and "arranged" actual vaccination. This process was influenced by the promoting/obstructive factors in each stage. Healthcare providers should understand the experiences and feelings of adolescent girls who were confronted with HPV vaccination in the context of their vaccination process and conduct enlightenment activities to promote vaccination, keeping the promoting and obstructive factors suggested in this study in mind.

Factors associated with the empowerment of Japanese families raising a child with developmental disorders.

We identified factors associated with the empowerment of Japanese families using the Family Empowerment Scale (FES) to contribute to the improvement of empowerment in Japanese families raising a child with developmental disorders (DDs). The study was conducted in 350 caregivers who raised children aged 4-18 years with DDs in urban and suburban districts in Japan. Multiple regression analysis of data collected from 275 respondents revealed that a decrease in family empowerment level correlated with a higher number of siblings reared together, a shorter period since the diagnosis was made, and lower awareness of social support and self-efficacy in caregivers. Medications, possession of an intellectual disability certificate, infrequent hospital visits of the child, disuse of local services by caregivers, and young caregivers also correlated with a lower level of empowerment in the Japanese family.

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.

Empowerment process for families rearing children with developmental disorders in Japan.

The understanding of developmental disorders and the support that is offered to families rearing a child with developmental disorders always have been limited in Japan. To clarify the empowerment process for families rearing a child with developmental disorders, we interviewed 20 mothers of children who lived in the wider Tokyo area, Japan. To analyze the data, we adopted the modified grounded theory approach. The results identified three stages in the empowerment process: confusion over caring for the child, confrontation with the child with the disorder, and expectations of a valuable life for the child. The empowerment process showed step-by-step progress: families that were originally ill-equipped to deal with their child's disorders were able to deal with them in collaboration with professionals through approaching the local administration and were able to shift their stance on child-rearing along with their child's growth. To promote the family empowerment process, cross-jurisdictional and cross-occupational collaboration among local care teams is needed. The members of the teams should understand the experiences and feelings of the families that are rearing children with developmental disorders in the context of the family's empowerment process.

A randomized controlled trial of an at-home preparation programme for Japanese preschool children: effects on children's and caregivers' anxiety associated with surgery.

OBJECTIVES: To determine whether the implementation of at-home psychological preparation programme for children and family prior to surgery can reduce anxiety for Japanese preschool children undergoing herniorrhaphy and their caregivers assessed as an appropriate outpatient care. METHODS: Patients were randomly assigned to either of two groups: the usual care group or the at-home preparation group. Both two groups viewed a patient-educational video for herniorrhaphy once as outpatients with other patients prior to hospitalization. The control group later underwent surgery without any further preparation. The experimental group watched the same educational video at home again with an auxiliary booklet prior to hospitalization. Children's anxiety was measured by the Wong-Baker FACES Rating Scale (FACES Rating Scale), while caregivers' anxiety was measured by the Spielberger's State Trait Anxiety Inventory (STAI). Both outcomes were measured repeatedly from pre-intervention to 1 month after surgery. RESULTS: Of the eligible 161 patients participating, 158 (98.1%) were randomly assigned to the control group (n = 81) and the experimental group (n = 77), and 144 (89.4%) completed the study. The experimental group gained more information and knowledge about surgery from parents and showed significantly lower scores than the controls for FACES and STAI. CONCLUSION: A specially designed at-home preparation programme as an outpatient care is effective to encourage parent-child verbal interaction concerning surgery and reduce both children and caregivers' anxiety associated with surgery.

Effect of resistance training on changes in lymphocyte subpopulation during head-down-tilt bed rest.

Head-down-tilt (HDT) bed rest imitates microgravity-like conditions for a supine human body on the ground. On the other hand, resistance training is used to eliminate unfavorable physical changes in astronauts under a microgravity environment during spaceflight. Twelve healthy males voluntarily participated in a 20-day -6 degrees HDT bed rest study. The ratio of CD3-positive peripheral blood lymphocytes were analyzed by immunofluorescence staining. Volunteers who undertook resistance-training during HDT bed rest were designated as the resistance training group (RTG), and those who did not as non-resistance-training group (N-RTG). We could not observe significant differences in the ratio of CD3-positive peripheral blood lymphocytes between RTG and N-RTG. Thus, resistance training during HDT bed rest might not have a significant effect on changes in the ratios of CD3-positive PBL.