Supporters' experiences of sensory characteristics of children with profound intellectual and multiple disabilities in after-school daycare centres: A qualitative study.

AIM: To examine how supporters working at after-school daycare centres, who are involved in the lives of children with profound intellectual and multiple disabilities in the community, pay attention to the sensory characteristics of these children and provide support. DESIGN: A qualitative descriptive design. METHODS: Data were collected through semi-structured interviews with 20 supporters in after-school daycare centres. Interview transcripts were analysed via qualitative content analysis. RESULTS: The participants' years of involvement in supporting children with profound intellectual and multiple disabilities ranged from 0.5 to 40 years, with an average of 9.8 years. Data were classified into 68 subcategories, 11 categories and three themes: understanding sensory characteristics and devising support, systematic support and challenges supporting the children. Supporters dealt with physical complications and cooperated with other caregivers to understand and respond to children's sensory characteristics. Difficulties dealing with sensory characteristics, challenges due to the supporters' own characteristics and challenges with the facility's infrastructure were identified. The findings could guide sensory characteristics considerations and support systems in after-school daycare facilities for children with profound intellectual and multiple disabilities. Both support content and challenges in supporting these children were identified.

Consensus on the items for early identification of unmet psychosocial needs of siblings of children with cancer and blood disease: A modified Delphi method.

AIM: To reach a consensus on question items for early identification of unmet psychosocial needs of school-aged siblings of children with cancer and blood disease. DESIGN: Modified Delphi method. METHODS: Twenty-three studies were reviewed to extract question items, which were classified into seven categories. A total of 39 question items were selected for this study. The selected question items were carefully considered using the modified Delphi method. The participants were 28 medical staff from a childhood cancer hub hospital and 20 sibling support group staff members. The first round consisted of a questionnaire (n = 48); the second, a focus group interview (n = 8) and the third, another questionnaire (n = 8). The first and third rounds used a 5-point Likert scale. This survey was conducted from July to October 2021. RESULTS: A total of 38, 26, and 24 question items were included in the first, second, and third rounds respectively. A total of 24 question items were extracted using the modified Delphi method to identify siblings' unmet psychosocial needs: relationship with family members, 3; daily life issues, 4; stress, 6; emotions, 3; information, 3; relationships with medical staff, 1 and social and medical resources, 4. Seven categories and 24 question items were confirmed as items for identifying the unmet psychosocial needs of school-aged siblings of children with cancer and blood disease.

Hospital Support for Siblings of Children With Illness in Japan.

Recent years have seen increased attention to the needs and support of siblings of children with chronic illness, and reports of intervention studies on siblings are gradually increasing worldwide. In Japan, the basic policy approved by the Cabinet in 2021 of The Basic Law for Child and Maternal Health and Development stipulates promoting support for the siblings of children with chronic illness, medical care, and disabilities. Simultaneously, practical reports are emerging. However, reports on the actual state of sibling support at medical institutions in Japan are limited. This study aimed to describe the actual state of support for siblings of children with illness in Japanese medical institutions using a cross-sectional design. Responses were obtained from 207 of 484 registered training facilities for Board-Certified Pediatricians of the Japan Pediatric Society through anonymous questionnaires investigating the actual state of siblings' support. Descriptive statistics were calculated, and the state of siblings' support was described. Fifty-two participants (25.1%) answered that the entire ward, including two outpatient departments, provided siblings' support, while 37 (17.9%) answered some staff made an effort, and 117 (56.5%) did not. Support mentioned included conversing with siblings, actively speaking to siblings, calling siblings' names, and counseling care through the parents. Of the 45 cases (21.7%) where siblings were invited to events and gatherings, 10 (22.2%) were siblings-centered events. Some cases involved collaboration with local sibling support groups such as non-profit organizations. This study clarified the actual state of siblings' support, and further expansion of this support is required.

Differences in specific concerns perceived by parents of children with cleft lip and/or palate based on the types of cleft.

BACKGROUND: Parents of children with cleft lip and/or palate (CL/P) have concerns including guilt and worry. Differences in concerns by cleft type is, however, under-researched. AIM: To compare differences in perceived concerns among parents of children with CL/P by cleft type, adjusting for children's gender and age. DESIGN: Cross-sectional study conducted in an outpatient centre, assessing psychological status of 171 parents of children aged <12 with CL/P using 12 items. RESULTS: Across cleft types, 'I am worried about whether the child's teeth will be straight' was the most strongly perceived concern (70.8%). After adjusting for gender and age, logistic regression showed significant differences in type of CL/P for (eg) 'I am worried that the child's appearance will not be beautiful', associated with CL over CP (OR = 0.07, 95% CI: 0.02-0.26) and CLP over CP (8.52, 3.23-22.50);' 'I am concerned about my child being able to speak well', associated with CP (3.12, 1.07-9.11) and CLP (5.69, 2.43-13.33) over CL, and 'I am worried that the child could suffer due to his/her appearance', associated with CL over CP (0.08, 0.02-0.29) and CLP over CP (10.07, 13.78-27.36). CONCLUSIONS: Parents' concerns were influenced by cleft type.

Children's psychosocial and behavioural consequences during their siblings' hospitalisation: A qualitative content analysis from caregivers' perspectives.

AIMS AND OBJECTIVES: This study aimed to comprehensively describe the psychosocial and behavioural consequences experienced by siblings of hospitalised children from the caregivers' perspective. BACKGROUND: After children are diagnosed with a major illness, their siblings may begin to exhibit psychological and behavioural problems, coupled with decreased quality of life. DESIGN: This study employed qualitative content analysis to describe the perspectives of 147 caregivers of siblings of hospitalised children, following the COREQ guidelines. METHODS: From January to March 2015, data were collected from 33 medical institutions in Japan using a survey that utilised an open-ended question. RESULTS: Four themes comprising 13 comprehensive categories were extracted: (1) maintaining their usual self, (2) internalising difficulties, (3) externalising difficulties, and (4) personal growth. During data analysis, value judgments were avoided, with the focus instead placed on dividing the perspectives into positive and negative categories. CONCLUSIONS: The neutral data analysis enabled us to describe the psychosocial and behavioural adjustments that siblings make to 'maintain their usual self'. RELEVANCE TO CLINICAL PRACTICE: This study's results can be used to educate healthcare providers, teachers and families about the psychosocial and behavioural effects of hospitalisation on siblings of hospitalised children to ensure that siblings struggling with psychosocial conflicts receive the necessary support.

Effectiveness of a Volunteer Training Program on the Learning Support of Children in Hospice Palliative Care.

BACKGROUND: Volunteers are expected to play a key role in children's hospice. However, there is a lack of information about how to cultivate effective volunteer training programs. OBJECTIVE: To verify the effect of a training program on volunteers' confidence in providing learning support and sharing experiences with children with life-threatening conditions and their families in a children's hospice. METHODS: In this pre-post study, participants were 48 undergraduate and graduate students from 3 universities in Japan. They received 5 lectures on children's hospice learning support. They evaluated the training program by rating their self-confidence in meeting each of the 15 program goals on a questionnaire. RESULTS: An exploratory factor analysis of the questionnaire yielded 12 goals in 4 factors: understanding of one's own and others' mental state, accommodating the learning needs of children with life-threatening conditions, understanding and accommodating the physical state of children with life-threatening conditions, and understanding the significance of children's hospice. A paired t test revealed that participants' self-confidence had increased significantly in 3 of these 4 factors after the program. However, the score for accommodating the learning needs of children with life-threatening conditions decreased but not significantly. CONCLUSION: Although it needs some improvements, the program was effective for improving volunteers' self-confidence in and understanding of learning support and sharing experiences with children with life-threatening conditions.

Resilience and difficulties of parents of children with a cleft lip and palate.

AIM: The present study explored the differences in emotional difficulties and resilience between fathers and mothers of a child with a cleft lip and palate. METHODS: Married couples were recruited who were accompanying their child with a cleft lip and palate (<12 years old) on regular visits to an outpatient clinic in a Japanese hospital. The participants were distributed an anonymous questionnaire that included items regarding emotional difficulties with the cleft lip and palate and a scale to measure resilience when caring for the children. In the data analysis, the paired t-test was used to compare the individuals within the couples. RESULTS: By analyzing the data of 64 couples who provided valid responses, two items with the highest mean score for the difficulties that were faced by both the father and mother of a child with a cleft lip and palate were: "I am worried about whether the child's teeth will be straightened" and "I am worried that the children could suffer due to their appearance." The mothers felt significantly more worry about their child's future and more guilt than did the fathers. In contrast, the fathers had greater resilience, in terms of problem-solving skills and recognition and acceptance than did the mothers. CONCLUSION: It is important that healthcare providers understand the difference between the fathers' and mothers' worries about their child with a cleft lip and palate. Specific support services should be offered to fathers with a high level of resilience, in terms of the acceptance of reality and problem-solving, which could increase their parenting ability.

Related Variables of Behavioral and Emotional Problems and Personal Growth of Hospitalized Children's Siblings: Mothers' and Other Main Caregivers' Perspectives.

The psychological well-being of the siblings of hospitalized children is at risk. This study examined the variables related to siblings' internalizing problems and personal growth during hospitalization from the perspectives of mothers and other main caregivers who temporarily assumed the main caregiver role to the siblings of hospitalized children in place of mothers in the period of children's hospitalization. A cross-sectional, exploratory survey conducted in Japan examined 113 mothers' and 90 other main caregivers' perspectives regarding the psychological state of 2- to 18-year-old siblings of hospitalized children. Mothers and/or other main caregivers of siblings during their brothers' or sisters' hospitalization completed the Child Behavior Checklist and the Siblings' Personal Growth Scale. Multiple linear regression analysis was performed with Child Behavior Checklist internalizing problems and total Siblings' Personal Growth Scale scores as dependent variables for mothers' and caregivers' perspectives. From mothers' perspectives, environmental factors that change with hospitalization affected siblings. From the perspectives of the other main caregivers, children's and families' demographic factors affected siblings' psychological state. Frequency of e-mail contact between mothers and siblings, explanation of the hospitalized child's condition, and hospital visitation rules ( F = 5.88, P = .001) explained 12.3% of variance in mothers' Siblings' Personal Growth Scale scores. Among other main caregivers, 11.6% of variance in the Child Behavior Checklist scores was explained by hospitalized children's birth order and main caregiver's prehospitalization residence ( F = 5.51, P = .006). Results suggest that the perceived variables related to siblings' psychological changes differ between mothers and other main caregivers.

Developing the "Skippu-Mama" program for mothers of children with autism spectrum disorder.

The "Skippu-Mama" peer support program was developed to improve quality of life and reduce parental stress in mothers of children with autism spectrum disorders. The program was designed to improve these variables by refreshing and healing participants' minds and bodies. Twenty-four mothers of 26 children diagnosed with ASD in Japan were included in the study and completed measures of quality of life and parental stress before, during, and after participation in the Skippu-Mama program. Our results demonstrated that time was a significant main effect. Further, multiple comparisons with Bonferroni corrections indicated a significant increase in World Health Organization Quality of Life 26 scores three months into the program and at its conclusion six months after commencement. Overall, the Skippu-Mama program improved the quality of life of mothers of children with ASD, and we believe that the intervention's focus on both individual and family variables may be especially effective in this population.

Predictors of maternal state anxiety on arrival at a Japanese hospital outpatient clinic: a cross-sectional study.

AIMS AND OBJECTIVES: To identify the factors that predict maternal state anxiety when mothers and their sick children visit the outpatient unit of a paediatric hospital. BACKGROUND: While previous studies have focused on predictors of anxiety in mothers with ill children, the existing literature is limited in study design, research timing, respondent characteristics, sample size and data analysis. DESIGN: A cross-sectional design with self-administered questionnaires. METHODS: Mothers were recruited from the outpatient unit of a Japanese paediatric hospital (N = 1077). Participants' state anxiety scores were collected using the Japanese version of Spielberger's State-Trait Anxiety Inventory. The independent variables were the mothers' and sick children's background information. RESULTS: Participants were 1077 mothers; 990 provided valid responses. Mothers' mean state anxiety score was 49·72. Significant predictors of maternal anxiety were mothers' childrearing anxiety, child age, the sick child having a fever, sick child having siblings, having a person providing childrearing support, the mother's first visit to the hospital, out-of-hours visit and severity of the child's illness. The overall model explained 21·6% of the variance (multiple regression analysis). CONCLUSIONS: As various factors predicted maternal anxiety, identifying methods to address these factors may reduce maternal state anxiety. RELEVANCE TO CLINICAL PRACTICE: There is potential for improved understanding of the predictors of maternal state anxiety to aid in the development of materials that would best measure anxiety. The present findings may also suggest some means of providing appropriate information and support to anxious mothers. Our findings cannot demonstrate causation, however, and teaching methods and supportive practices were not investigated; therefore, a qualitative study on the concrete content of maternal anxiety and an intervention study to create support services for anxious mothers is required. In addition, prospective or longitudinal studies are also important for investigating causation.

Effectiveness of aromatherapy in decreasing maternal anxiety for a sick child undergoing infusion in a paediatric clinic.

OBJECTIVES: We examined whether aromatherapy involving inhalation of yuzu (Citrus ichangensis×Citrus reticulata) oil was effective in decreasing mothers' anxiety for her sick child receiving an infusion at a paediatric clinic. DESIGN: Controlled clinical trial. SETTING: Mothers of sick children who arrived at the hospital were asked to complete an anonymous questionnaire. After a doctor examined the child and confirmed the necessity for infusion, the mothers who agreed to participate in our study were allocated to an aromatherapy or a control group. INTERVENTIONS: A diffuser was filled with yuzu oil before the subjects entered the aromatherapy room. The mother was shown how to use the aromatherapy diffuser while the child was receiving an infusion in the same room. Fifteen minutes after entering the room, the mothers were asked to complete an another questionnaire. MAIN OUTCOME MEASURES: We measured the mother's anxiety with the state anxiety score from the State-Trait Anxiety Inventory. RESULTS: There were 60 subjects in the aromatherapy group and 61 in the control group. Both groups were well balanced in terms of demographic characteristics. Using analysis of variance, we demonstrated a significant difference in two-factor interactions between the control and aromatherapy groups. Maternal state anxiety was significantly lower in the aromatherapy than in the control group. CONCLUSIONS: Inhalation of yuzu oil was shown to decrease maternal anxiety for a sick child. A multicentre randomized controlled trial or double-blind study is necessary to obtain objective evidence of this benefit of aromatherapy.