BACKGROUND:Teacher readiness is widely regarded as central to inclusive education, yet evidence is limited on how different routes to that readiness, initial teacher education versus continuing professional development (PD), relate to teachers' confidence in diverse classrooms. This study examined the associations of inclusion-focused PD participation and initial-training preparedness with teachers' self-efficacy for teaching culturally diverse classes, and with classroom climate, across a large set of education systems. METHODS:Using the OECD TALIS 2018 lower secondary teacher database (153 682 teachers across 47 countries), self-efficacy for culturally diverse classrooms was the primary outcome and orderly classroom climate was the secondary outcome. Exposures were a count of inclusion-relevant PD topics and a composite of initial-training preparedness for mixed-ability and multicultural teaching. Estimation was design-based, using final teacher weights for point estimates and balanced repeated replication for standard errors, with country fixed effects; the multilevel structure was quantified with empty-model intraclass correlations and confirmed with a weighted mixed-effects model. RESULT:Roughly a third of the variance in diversity self-efficacy lay above the teacher level (country ICC ≈ 0.13; school ICC ≈ 0.18), confirming the need for clustered estimation. In the fully adjusted model (72 503 teachers, 45 countries), both exposures were positively associated with diversity self-efficacy, but initial-training preparedness showed roughly twice the association of PD participation (β = 0.20 vs. 0.10; both p < 0.001). The same pattern held for orderly classroom climate (β = 0.11 vs. 0.07; both p < 0.001) and was robust across sensitivity analyses. CONCLUSION:Across diverse education systems, teachers' readiness for culturally diverse classrooms was more strongly associated with how well their initial preparation had equipped them than with later participation in inclusion-focused PD. Strengthening the diversity and inclusion content of initial teacher education may be at least as important as expanding in-service training. Findings are cross-sectional and associational.
BACKGROUND:Children born preterm (PT) face elevated neurodevelopmental risk, yet the role of fathers' sensitive caregiving in this process remains understudied. OBJECTIVE:To test whether observed paternal sensitivity predicts cognitive and behavioural outcomes in PT children and moderates prematurity-related risk. METHODS:Individual participant data (IPD) from two prospective cohorts in Australia and Israel (2009-2014) were pooled (N = 207; 151 PT, 56 term). Father-child and mother-child dyadic interactions at 6-12 months corrected age were observed and coded with the emotional availability (EA) sensitivity scale. Child cognition and behaviour were assessed at 5 years of age. Mixed-effects regressions controlled for sex, age, multiple birth, small-for-gestational-age status and maternal education. RESULTS:Higher paternal sensitivity predicted higher cognitive scores (β = 0.25 per SD, 95% confidence interval = [0.09, 0.41], p < 0.003). Paternal sensitivity was not related to children's later behavioural problems (-0.003 [-0.21, 0.20], p = 0.981). No gestational age × paternal sensitivity interaction emerged. CONCLUSIONS:Sensitive fathering confers an additive, clinically meaningful benefit for cognitive function in both PT and term children, over and above social and medical risk. Early-intervention programs that actively engage fathers and support sensitive responsive interactions may enhance developmental trajectories in this vulnerable population.
BACKGROUND:Timely access to developmental assessment services for children is essential, yet diagnostic delays persist even in nations with advanced healthcare systems. In Western Australia (WA), a recent parliamentary inquiry revealed over 17 000 children awaiting developmental assessments, with median wait times for specialist appointments reaching 15.1 months. METHOD:Using a qualitative design underpinned by a social constructionist epistemology, this study examined the perspectives of parents (n = 17), educators (n = 10) and healthcare professionals (n = 9) in WA through open-ended survey questions analysed via mixed content analysis. We aimed to identify commonalities in stakeholder experiences with diagnostic delays and potential solutions. RESULTS:Stakeholders consistently identified insufficient funding (22 instances), extended wait times (44 instances) and lack of support (110 instances) as primary concerns. Parents reported significant stress navigating the system and frustration with 'wait and see' approaches; educators highlighted inadequate staffing and challenges supporting undiagnosed students; and healthcare professionals emphasised the need for more efficient referral processes and increased specialist availability. CONCLUSION:Findings underscore the need for increased funding and workforce incentives, improved inter-stakeholder communication and referral processes and clearer diagnostic pathway information. These cross-sector perspectives offer actionable recommendations for policy reform aimed at reducing diagnostic delay for children in WA.
BACKGROUND:The preschool environment is a critical determinant of children movement behaviour; however, evidence integrating the 24-h movement behaviour remains scarce, especially in the global south. OBJECTIVE:To identify the association between the preschool environment and 24-h movement behaviour in Uruguayan preschoolers. METHODS:A cross-sectional study was conducted with 112 preschoolers (45.32 ± 6.40 months) from Rivera, Uruguay. Movement behaviours were measured using accelerometry (Actigraph, wGT3X-BT) and operationalized as a 24-h composition. The preschool environment was audited in six domains: i) teacher role, ii) teacher training and education for family, iii) school policies, iv) indoor equipment, v) outdoor equipment, and vi) outdoor infrastructure. Multivariate linear regression models between preschool environment and isometric log-ratio (ilr) coordinates of movement behaviours were conducted. RESULTS:The outdoor equipment environmental predictor significantly associated with the 24-h movement behaviours composition (F = 3.40, p = 0.020), favouring the increase moderate-to-vigorous physical activity MVPA (β = 0.10, p = 0.027). CONCLUSIONS:This research highlights Outdoor Equipment (availability, quantity and accessibility for preschoolers) as a key factor in promoting the movements behaviour and levelling the playing field for girls in moderate-to-vigorous physical activity.
BACKGROUND:Parents of children with Developmental Coordination Disorder (DCD) face barriers in accessing school-based services and supports for their children despite challenges in academic attainment related to motor coordination difficulties and secondary consequences associated with DCD. Changes to service delivery are vital for student success but need to be rooted in parent- and child-identified needs and priorities. PURPOSE:To explore parent perspectives of children (5-18 years) with DCD on the barriers and facilitators in accessing clinical and curriculum-based services and supports across Canada. METHOD:We circulated an online cross-sectional survey using a multi-pronged recruitment strategy to parents of children with suspected or confirmed DCD across Canada from November 2021 to June 2022. Quantitative data were analysed using descriptive statistics and chi-square tests. Exploratory content analysis was completed for qualitative data. FINDINGS:Parents across Canada responded, with 488 included surveys. There is inconsistent availability and access to school-based therapies, creating an inequitable service delivery. There are long waitlists, limited frequency of visits and often children are ineligible for services. Despite classroom accommodations and resource support, parents report a lack of educator awareness and understanding with variable adherence to needed curriculum adaptations. Canadian school supports and services are failing to meet the needs of children with DCD, resulting in negative trajectories in physical, social, emotional and academic pursuits. CONCLUSION:Transformative changes are required for provision of school-based clinical and curriculum services and supports. Evidence-informed approaches, such as a tiered service delivery model, can provide effective and financially viable processes, ensuring positive outcomes for students with DCD.
BACKGROUND:Childcare centres for toddlers and preschool-aged children serve as a setting crucial to mental development, as stable relationships with caregivers and peers outside the family form. Children with early mental health disorders, especially externalising behaviours, are at increased risk of being excluded from access to these institutional services. METHODS:The retrospective study investigates partial or full exclusion from childcare centre attendance among toddlers and preschoolers (N = 177) who received psychiatric day clinic treatment within two periods (2018/2019 and 2023/2024). We compared excluded and non-excluded children regarding clinical parameters in a binary logistic regression. Furthermore, treatment trajectories were examined to assess reintegration into childcare settings as a potential therapeutic outcome. RESULTS:Among the patients in the psychiatric day clinic for toddlers and preschoolers, the rate of exclusion from childcare centre attendance was 25.5% (2023/2024) and 8.0% (2018/2019), respectively. Boys were predominantly excluded from childcare centre attendance with 66.7% (2018/2019) and 92.3% (2023/2024). Overall for both cohorts, while male sex (p = 0.028) and cohort membership in the 2023/24 cohort (p = 0.009) predicted exclusion, other investigated variables (i.e., socioeconomic status, migration status, parental psychiatric condition) did not show an effect. In 78.1% of the excluded patients in the combined samples, (partial) reintegration or improvement of social integration was recorded or initiated during treatment. CONCLUSIONS:In our study, exclusion from childcare attendance differed between 2018/2019 and 2023/2024 in toddler and preschool children, especially affecting boys. In line with the UN Convention on the Rights of the Child, 1989, ensuring inclusive access to early education regardless of physical or mental impairments should be an important therapeutic goal. Mental health professionals should pay special attention to and actively support prevention and reintegration regarding early life exclusion experiences from childcare centres.
BACKGROUND:School participation is frequency and involvement from person-environment transactions, not diagnosis, per the International Classification of Functioning, Disability and Health (ICF) and the family of participation-related constructs (fPRC). In this framework, the environmental and child determinants of school participation (e.g., school routines and peer/teacher context; self-regulation, activity competence and preferences) interact bidirectionally to shape everyday participation. However, many interventions still target isolated impairments, overlooking coordinated changes in capacities and context. Grounded in this contemporary view, this study aimed to investigate the impact of an immersive virtual reality (IVR) intervention on school participation-related constructs in children with ADHD. METHODS:The study included 92 children aged between 7 and 12 years diagnosed with ADHD. Participants were randomly assigned into intervention (n = 46) and control (n = 46) groups. Both groups completed the School Participation Questionnaire (SPQ) and Bruininks-Oseretsky Test of Motor Proficiency Test 2 Brief Form (BOT2-BF) assessment prior to the intervention. The intervention group received an IVR intervention program twice a week for 8 weeks. During this period, the control group did not receive additional therapy. At the end of the 8 weeks, the SPQ was readministered to both groups. RESULTS:Baseline characteristics showed no significant differences in SPQ and BOT2-BF results between groups, confirming homogeneity prior to intervention. Following the intervention, the study group demonstrated significant improvements across all domains of the SPQ (doing, being, symptoms and environment), with large effect sizes for SPQ total score (d = 0.978) and subdomains (d = 0.452-0.910). In contrast, the control group showed no improvements and even declines in subdomains. Post-intervention, between-group comparisons revealed significant differences favouring the study group across all domains (p < 0.001), with large effect sizes (d = 0.878-1.165). CONCLUSIONS:Findings suggest that the IVR program was associated with improvements in teacher-rated environmental and child determinants of school participation (SPQ domains) in children with ADHD.
INTRODUCTION:Supporting students with special needs in inclusive schools requires collaboration between teachers and occupational therapists (OTs). While service models promoting health, in-class support and shared knowledge are recommended, relational and organizational barriers persist. This multimethod study evaluates the impact of a tailored knowledge translation (KT) intervention on collaborative attitudes and behaviours of OT-teacher teams. METHODS:A 12-week KT intervention, including six sessions with OTs and elementary teachers (n = 6), was conducted. Participants established two collaborative goals using the Canadian Occupational Performance Measure (COPM), rated weekly, and completed the Modified Index of Interdisciplinary Collaboration (MIIC) at three time points. Changes were analysed descriptively using mean scores to summarize. Postintervention, individualized interviews were conducted and analysed using inductive thematic analysis. RESULTS:While MIIC scores indicated stable perceived collaboration, improvements were observed in 11/12 collaboration-based goals, with average changes of +3.25 and +4.25 points on COPM performance and satisfaction scales, respectively. Four themes supported this shift: Embracing collaboration is valued personally and professionally; organizational and relational contexts shape collaboration; engaging environments support reflection and active learning; and self-efficacy and perspectives can shift postintervention. CONCLUSION:Findings highlight the importance of adopting contextualized, tailored KT strategies in school settings to enhance OT-teacher collaboration and teamwork through dedicated time, space and intentional reflection.
BACKGROUND:Because instruments are routinely employed by health professionals, it is essential to establish their psychometric quality, particularly regarding validity evidence. OBJECTIVE:The study aimed to analyse the psychometric measures used in studies of validity evidence of instruments for assessing the occupational performance of children with developmental coordination disorder. METHODS:A systematic review was conducted according to PRISMA (Preferred Reporting Items for Systematic Review and Meta-Analysis) guidelines using five electronic databases. RESULTS:Twenty-four articles were included, with 17 different scales. Discriminant validation was the most reported psychometric measure, with half of the studies reporting using parametric and nonparametric analyses. Among the psychometric methods verified in the studies, reliability analysis was the most prevalent, using Cronbach's alpha and test-retest; one study used ordinal alpha. One third of the studies used exploratory or confirmatory factor analysis for internal structure. CONCLUSION:The validation techniques used varied among the studies found, and these were sometimes incomplete and confusing, as well as an insignificant result in relation to the use of more contemporary concepts for the types of validity evidence. Factor analysis for internal structure was rarely reported in the studies; however, it stands out for being a more robust technique for this type of validation.
BACKGROUND:Children in underdeveloped countries frequently suffer from malnutrition, which can have both short-term and long-term consequences, including cognitive impairment (i.e., stunting), underweight, wasting and ultimately mortality. It is necessary to understand the underlying causes and risk factors associated with this burden. Therefore, this study aims to investigate how risk factors affect coexisting forms of undernutrition (CFU) among Bangladeshi children under the age of 5, with the aim of suggesting possible strategies to enhance nutritional outcomes. METHODS:This study is based on secondary data extracted from the BDHS 2022 dataset, consisting of 4085 children aged under 5. Descriptive statistics, the chi-square test, the Boruta algorithm and logistic regression are used in a Bayesian setting. RESULTS:Findings revealed that the prevalence of CFU is 19.44%, and the majority of them were from the Sylhet division. Children from lower wealth indices and those living in urban areas are at higher risk of CFU. Children of uneducated mothers have 3.4 times higher odds (95% CrI: 2.352, 5.001) of CFU than those of higher educated mothers; children of underweight mothers have 1.6 times higher odds (95% CrI: 1.338, 2.092); and children of overweight or obese mothers have 0.6 times higher odds (95% CrI: 0.532, 0.794) than children of mothers with a normal weight. The odds of having CFU are 1.2 and 1.4 times greater (95% CrI: 0.953, 1.553 and 1.103, 1.790) for children from the poorer and poorest households compared to children from middle wealth families and 0.8 and 1.7 times higher (95% CrI: 0.600, 1.145 and 1.405, 2.191) for children whose birth order is at least six and who are older than 23.9 months. A child's nutritional health is also influenced by a number of other important factors, including the child's age and birth order, the mother's age at first birth, breastfeeding status, TV access, toilet facilities, divisions and residence. CONCLUSION:The authors suggest that, in addition to improving mothers' health and other socio-demographic factors, targeted interventions should be developed to reduce the prevalence of CFU.
INTRODUCTION:Educational videos can improve parent engagement in early childhood development. For widespread adoption, these videos need to be practical and of high quality. This study evaluated how paediatric physiotherapists and parents perceived the educational videos of the 'Move and Play Programme'. METHODS:This cross-sectional study included 209 paediatric physiotherapists and 100 parents, with data collected online. Each participant received links to two or three videos and an evaluation form. Videos were rated for presentation, content and objectives. Physiotherapists assessed clinical applicability, whereas parents rated home use. Descriptive statistics were used to analyse profiles and perceived video quality. RESULTS:Most videos were rated as fully adequate in terms of presentation, content and clarity of objectives by both groups. Physiotherapists found the videos to be useful for guiding home-based activities and communicating with families. Parents reported that the videos supported their infants' development and increased their confidence in performing activities independently. Most would recommend the videos. CONCLUSION:The 'Move and Play Programme' videos are effective tools for home developmental activities, recommended by both parents and paediatric physiotherapists.
BACKGROUND:Parents of children with disabilities often manage complex nutritional and oral health needs, yet the factors supporting their competence remain insufficiently understood. AIM:This study examined the relationships of parental practices, parental self-efficacy, family support and caregiving characteristics with nutrition and oral health management among children with disabilities. METHODS:A cross-sectional, descriptive, correlational design was used. The sample comprised 195 parents of children with disabilities. Data were analysed using independent-samples t tests, one-way analysis of variance with Bonferroni post hoc comparisons, Pearson correlation analysis and multiple linear regression. RESULTS:Parental self-efficacy and family nutritional awareness differed significantly across selected sociodemographic and caregiving characteristics. Family support was the strongest predictor of parental self-efficacy. Greater preparedness for disability, social security coverage, higher maternal education and cooperative child behaviour during dental examinations were also associated with higher self-efficacy. Paternal education was not a significant predictor. Caregiving difficulty was positively associated with family nutritional awareness, suggesting that greater caregiving demands may encourage adaptive health information-seeking and management behaviours. A high prevalence of dental pain was reported among children, indicating potential deficiencies in preventive oral health care, timely service access and caregiver education. CONCLUSION:Parental competence in managing the nutrition and oral health of children with disabilities is shaped by interpersonal, educational and structural resources. Interventions should strengthen family support, caregiver preparedness, access to social protection and practical guidance on preventive oral health and nutrition. Particular attention should be directed to families experiencing limited resources and children with unmet dental care needs in practice.
BACKGROUND:Developmental screening can assist in identifying children 'at-risk' of developmental delay. The childcare setting may be the ideal location for screening most children for developmental delay. Therefore, our aim was to determine the feasibility of early childhood educator-led Targeted Motor Control (TMC) screening to identify 4-year-old children 'at-risk' of motor delay. METHODS:In this study, conducted in Australia, we used a mixed methods convergent design. Educators attended a 2-h in-person TMC training, which included education, and a demonstration and scoring video that educators watched and scored, respectively. Educators then screened a minimum of four children each aged between 3 years 9 months to 4 years and 5 months, using the TMC. The final TMC that each educator performed was coscored by an experienced TMC-trained physiotherapist. Feasibility of the training and use of the TMC was evaluated using an online survey completed by all educators that covered five feasibility themes: acceptability, demand, practicality, implementation and integration. The survey, comprising closed and open-ended questions, was completed by educators after performing all TMC screening. RESULTS:Thirteen educators screened four children each and completed the survey. In terms of major findings, merging of quantitative and qualitative data demonstrated convergence for the themes of acceptability, demand and implementation with 100% agreement between educator and physiotherapist scoring on the TMC. However, there was divergence of findings for the feasibility themes of practicality and integration. CONCLUSION:It can be concluded that it may be feasible for early childhood educators to perform TMC screening, but we recommend modifications to the training and resources to enable educators to perform screening with greater success.
BACKGROUND:Evidence supports developmental surveillance and integrated care hubs for early identification and intervention in child developmental vulnerabilities. However, data on their use in community settings including schools and multicultural populations is limited. This study examined the implementation of the Watch Me Grow-Electronic (WMG-E) developmental surveillance tool and staff perspectives at the Mirrung wellbeing hub integrated with a preschool in South-Western Sydney. METHODS:A mixed-methods study recruited parents/carers of children aged 3-6 years enrolled at Ashcroft Public School to complete WMG-E developmental screening assessments. Additionally, qualitative interviews with Mirrung staff assessed implementation metrics including acceptability, adoption, appropriateness, coverage and sustainability. Multilevel binary logistic regression models were conducted to determine whether sociodemographic and clinical characteristics were associated with the occurrence of developmental concern. Qualitative data was analysed thematically. RESULTS:Lower parent/carer education was associated with three-fold higher risk of child developmental concern (AOR 3.36, 95% CI 1.06-12.44). Thematic analysis revealed three themes: Barriers to Service Access, Enablers to Service Access and Uptake of WMG-E at Mirrung. CONCLUSION:WMG-E is a feasible, appropriate and acceptable developmental screening tool for multicultural school-based settings. Findings emphasise the need for culturally relevant health literacy resources to improve parents/carers' engagement to support early child development.
BACKGROUND:The prevalence of gambling among adolescents is rising, yet teachers often lack awareness of its associated risks. Special educational needs (SEN) students may experience increased vulnerability to gambling-related harms, although it remains unclear whether teachers recognise this. METHODS:To explore this issue, 15 UK mainstream secondary school teachers were recruited through purposive sampling and participated in online semi-structured interviews exploring their perceptions of gambling behaviours among typically developing and SEN students. Interviews were audio-recorded, transcribed verbatim and analysed using an exploratory interpretive approach. RESULTS:Reflexive thematic analysis identified three themes: understanding of gambling-related risks, SEN students' vulnerability and secondary concern. Teachers described gambling as a potential risk and perceived SEN students to be more vulnerable, citing cognitive and social deficits as contributing factors. However, gambling was generally viewed as less serious than other risky behaviours, such as substance use. Participants reported that limited training and knowledge contributed to gambling being deprioritised relative to other concerns, leaving them feeling underprepared to address gambling. Although participants perceived SEN students as particularly vulnerable, many expressed low confidence in recognising and responding to gambling-related risks. CONCLUSIONS:This study underscores the need for targeted professional development to challenge misconceptions and strengthen teachers' competence in addressing gambling-related risks, particularly in supporting SEN students who may experience additional vulnerabilities in online contexts. It further calls for specialised research and tailored interventions within educational settings to ensure risks related to gambling are not overlooked.
Background ENabling VISions And Growing Expectations (ENVISAGE) is a programme focused on strengths-based approaches to child development, empowering parents of children with neurodevelopmental disabilities. The established ENVISAGE-Families and ENVISAGE-Service Providers programmes have been evaluated through several studies, demonstrating positive impacts. Building on the success of these programmes, an 'integrated' version was co-developed and co-delivered to both parents and service providers through five online weekly workshops, encouraging both groups to learn with and from each other.Methods A pilot study was conducted to evaluate ENVISAGE-Integrated. The programme was delivered in five cohorts of five to eight participants each, co-facilitated by a parent and service provider from the ENVISAGE research team. Participants completed five weekly workshop surveys and a semi-structured interview after the programme. Quantitative data from surveys were analysed using descriptive statistics and Mann-Whitney tests. Qualitative data from semi-structured interviews were explored using thematic analysis.Results Nineteen service providers and 11 parents of children with neurodevelopmental disabilities participated in the programme at one children's treatment centre. Survey responses indicated high levels of agreement regarding comfort, perceived learning and meaningfulness of participating with parents and service providers. Thematic analysis generated three themes that reflected the perceptions and experiences of both parents and service providers: (i) reaffirmation of the importance of collaborating and relationship-building; (ii) expansion of understanding how to work together; and (iii) appreciation for each other's realities as people first and foremost. A fourth theme relevant to parents was a sense of connection and support from other parents' shared experiences. A fifth theme relevant to service providers was validation of clinical practice through alignment of content with parent values.Conclusions ENVISAGE-Integrated offered benefits by facilitating collaborative learning between parents and service providers. Although findings are promising, ENVISAGE-Integrated requires thoughtful recruitment and balanced group composition to ensure the programme benefits both parents and service providers.
BACKGROUND:Participation in educational settings is essential for children's development, learning and well-being. Although access to (pre)school is a fundamental right, participation often depends on children's language abilities. Developmental language disorder (DLD) is among the most common childhood conditions, yet little is known about age- and institution-related differences in participation among children with DLD. This study explores parental perspectives on participation of children with DLD in preschool and primary school settings, considering environmental influences and strategies used to support participation. METHODS:Parents of preschool-aged (n = 45; Mage = 6.3) and primary school-aged children (n = 56; Mage = 8.5) with DLD in Germany completed the Participation and Environment Measure for Children and Youth. Mann-Whitney U tests and chi-squared analyses were used to examine group differences, whereas an inductive content analysis was applied to identify categories in the responses to open-ended questions. RESULTS:According to parental reports, primary school children showed slightly higher average participation, but only two activities differed significantly, indicating largely similar participation patterns across groups. Despite high overall involvement, participation frequency varied, with almost a third of children never taking part in school-sponsored teams or holding special roles. Classroom activities showed the highest participation frequency but also the lowest involvement and the strongest parental desire for change. Environmental supports outweighed barriers, but sensory and cognitive demands remained key challenges across both groups. Strategies of preschool parents focused on daily routines, planning and logistics, whereas parents of school-aged children emphasized academic support and collaboration with educators. Across both groups, emotional and motivational support was the most reported strategy. CONCLUSION:Parental reports highlight that participation among children with DLD is shaped more by environmental demands and available supports than by educational stage alone. These findings underscore the importance of context-sensitive, family-informed approaches to fostering meaningful engagement in everyday school activities.
BACKGROUND:In Japan, the number of children with medical complexity (CMC) is increasing. In response, the Act on Support for Children Requiring Constant Medical Care and Their Families mandated prefectural support centre establishment and promoted coordination across health, welfare and education sectors. In addition to services comparable to those in the United States (e.g., public school options and respite care), Japan strengthened publicly funded home-visit physician, nursing, and personal helper and after-school services to support parents. However, it remains unclear how parents adapt to this evolving system. This study aimed to qualitatively examine the strategies and challenges of primary parental caregivers of CMC in Japan to generate insights that can support family-centred services and clinical care practice. METHODS:We conducted a qualitative study guided by the Consolidated Criteria for Reporting Qualitative Research and included 13 primary parental caregivers. The inclusion criterion was ≥ 1 year as the principal at-home caregiver of CMC (< 18 years). RESULTS:Interviews were transcribed verbatim and inductively coded by two experienced researchers to achieve thematic saturation. Caregivers were predominantly mothers (11 mothers [female] and 2 fathers [male]). The median [interquartile range] ages of the parents and children were 47.0 [35.0-50.0] and 10.0 [7.0-13.0] years, respectively. Eight themes were identified. The challenge subthemes highlighted insufficient paediatric-trained home-visit nursing services, weak support for interagency coordination and transition-to-adult care support and inadequate respite care as priority areas for healthcare professionals. CONCLUSIONS:Parents effectively leveraged supportive policies; however, deficiencies remain in paediatric-trained home-visit nursing services, interagency coordination, transition-to-adult care support and respite care. These challenges mirror international reports indicating global and implementation-level gaps. Additionally, reflecting on the unique context of Japan, caregiving was predominantly mother-centred, and practical strategies for disaster preparedness were identified. Family-centred care should prioritize workforce expansion, stronger cross-sector coordination and practical respite solutions at the point of care.
