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Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Background: Blended feeding has become increasingly prevalent in recent years with its practice gaining some momentum. With anecdotal reports of benefits and little evidence of harm in the literature regarding blended feeding, this scoping review was deemed important. The aim of this scoping review was to summarise the published evidence about blended feeding in gastrostomy‐fed children. Method: The scoping review methodology used included searches in specific online databases: PUBMED, PsychINFO, CINAHL, SCOPUS, AMED and EMBASE for articles that addressed issues pertaining to blended feeds in gastrostomy‐fed children. Grey literature was also considered. Inclusion criteria included papers that pertained to information and research on blended feeding in gastrostomy‐fed children. Studies published in English over the past 11 years (2011–2022) were included. This resulted in 59 papers being included in this scoping review. Results: Thematic analysis of the literature identified eight overall themes. It was clear that parents found blended feeding promoted the normalising of feeding, their own involvement in decision‐making around foods and promotion of a socially inclusive mealtime. The need for dietician and health professional input and support is key, whereas a lack of guidelines acts as a barrier to blended feeding. Furthermore, risks associated with blended feeding are identified but also the benefits to the physical well‐being of the child are considered. Conclusion: The review was comprehensive in that it identified a broad range of literature, exploring the extent, range and nature of research activity related to the use of blended feeds. The lack of original research is a concern. However, it is expected this review will provide direction for researchers, and in particular inform policy and practitioners working in the field where blended feeds may be an option for gastrostomy‐fed children. [ABSTRACT FROM AUTHOR]

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family‐centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. Methods: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two‐way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line‐by‐line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. Results: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. Conclusions: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist‐led and child‐centred towards family‐centred care. [ABSTRACT FROM AUTHOR]

Background: Mil Días (A Thousand Days) is a programme for the first thousand days of life, from gestation to 2 years of age, targeted at highly vulnerable children and/or mothers and pregnant women. The programme was implemented in August 2015 in the municipality of San Miguel, in Argentina. Mil Días is designed in a holistic and intersectoral way. The main form of intervention is through home visits, but other benefits are available depending on the 51 vulnerability criteria by which participants are admitted to the programme, most of which are related to health issues. Exits of the programme occur when the mother and/or child have reversed the deprivation/s of the entrance‐criteria. Methods: This paper provides an analysis of the programme's primary data between August 2015 and May 2019, with a total of 1,111 programme participants. First, we perform a statistical analysis of the targeted population of the programme. Second, using a logistic regression, we study factors associated to the withdrawal from the programme. Third, using survival analysis, we study the correlates of time to graduation from the programme. Results: We find that the programme is well‐targeted, as participants exhibit higher deprivation levels than those exhibited by beneficiaries of social programmes in general in the same municipality. We also find that programme participants in situations of most extreme vulnerability are more likely to abandon the programme and that successful exits from the programme take longer for more complex cases. Conclusions: Mil Días–San Miguel is a programme for early childhood development in Argentina, which was pioneer when it was first introduced. It is well targeted and exhibits encouraging results despite complex cases taking longer to sucessfully exit the programme. In addition, the poorest poor participants are more likely to abandon the programme and so additional actions could be taken to retain them, as intended by the 'Leave No One Behind' 2030 commitment. [ABSTRACT FROM AUTHOR]

This paper reports part of a wider systematic review commissioned by the English National Safeguarding Panel on Sudden Unexpected Death in Infancy (SUDI). The wider review covered three areas: interventions to improve safer sleep practices in high‐risk families, interventions to improve engagement with services and decision making by parents at high risk of SUDI about infant sleep environments. Here, we report the qualitative and quantitative studies reviewed under the engagement strand. Parental engagement is understood to be a multidimensional task for health and social care professionals comprising attitudinal, relational and behavioural components. Following a PROSPERO registered systematic review synthesizing the three strands outlined, 28 papers were found to be relevant in the review of interventions to improve engagement with services in families with children at risk of significant harm through abuse or neglect. No studies were found that specifically focused on engagement of families at high risk for SUDI, so these wider engagement studies were included. The different types of intervention reported in the included studies are described under two broad themes: Enablers (including parental motivation and working with families) and Barriers. Given the focus in the studies on interventions that support parental engagement, the Enablers theme is more extensive than the Barriers reported although all studies noted well‐understood barriers. The evidence underpinning these interventions and approaches are reviewed in this paper. We conclude that effective engagement is facilitated by experienced professionals given time to develop supportive non‐judgemental relationships with families in their homes, working long‐term, linking with communities and other services. While these conclusions have been drawn from wider studies aimed at reducing child maltreatment, we emphasize lessons to be drawn for SUDI prevention work with families with children at risk of significant harm. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). Method: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL‐Child parent‐proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. Results: Fifty‐two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self‐care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). Conclusions: Collaborative goal setting is an integral part of family‐centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences. [ABSTRACT FROM AUTHOR]

Growing evidence demonstrates that the mental and psychosocial health impacts of caring vary significantly for individual children, depending on who they are, the person that they care for, their responsibilities and the wider family situation. Although individual studies have made progress in identifying the range of impacts, there is a lack of clarity around which impacts affect who and in what circumstances. This synthesis, based on RAMESES realist protocols, aims to increase clarity concerning how and why the mental and psychosocial health impacts of caring for a family member vary for different children. There were 12 391 unique search results screened at title, abstract and full‐paper levels. Forty‐four retained studies were analysed, resulting in the development of a model with 17 context‐mechanism‐outcome configurations. The model divides the configurations into three interlinking domains. The caregiving responsibilities domain considers how the impacts of caring vary with the circumstances of the individual young carer, the person they care for and their family. The identity domain details the development of a caring identity that potentially mitigates the negative effects of caring and enables positive benefits. The support domain concerns the support provided from family, community and services that, depending on quality, can mitigate or exacerbate the impacts of caring. Support also moderates the care identity by affecting self‐perception of the caring role. The model has the potential to inform the development of interventions that target particular mechanisms to enable positive change for young carers. This potential can be enhanced by further research to test the model, with a focus on refining configurations where less evidence is available. There is a particular need to focus on identification which is under‐represented in the model as both a mechanism and a contextual factor due to unidentified young carers being largely absent from past research. [ABSTRACT FROM AUTHOR]

Background: Since the Convention on the Rights of the Child in 1989, interest in the ethical and methodological challenges involved in conducting research with children has increased considerably. Researchers who work with children have to take into account children's intrinsic physical, mental and emotional vulnerability as well as their interdependence with other family members, particularly their parents. This is especially challenging in research that seeks to explore children's lived experience in relation to aspects of their family lives. Objective: We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives. Methods: We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist. Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers. Results: Our results confirm that a research project that asks children about aspects of their family lives leads to a number of ethical tensions: While children depend on their parents and family to ensure that their safety and physical needs are met, they also greatly contribute to the development of family dynamics. We highlight methodological strategies that allow researchers to mitigate the ethical challenges that are inherent to this type of research. Discussion/conclusion: A promising approach is to use participative methods at each stage of research, including developing a trusting and triadic partnership that includes parents, children, a multidisciplinary research team and professional gatekeepers. Benefits as well as possible risks for participants should also be considered when children and their parents are engaged in a study. [ABSTRACT FROM AUTHOR]

Introduction: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. Methods: This paper reports a secondary data analysis. Semi‐structured, individual interviews were conducted and analysed using qualitative description. Results: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. Conclusion: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families. [ABSTRACT FROM AUTHOR]

Background: Maternal parity, which is usually measured as the number of children born to a mother, has a substantial impact on the social and environmental factors around children and their development. This paper estimates the Early Childhood Development Index (ECDI) of 3‐ and 4‐year‐old children in Bangladesh and examines the relationship between maternal parity and early childhood development. Methods: The study analysed nationally representative data from the Bangladesh Multiple Indicator Cluster Survey 2019. The dataset had 9453 children aged from 36 to 59 months. The ECDI was computed following the UNICEF's approach involving psychometric computation of four domains of development: physical, literacy‐numeracy, learning and social–emotional. Since the dataset has a hierarchical structure, we used multilevel logistic regression. Results: A quarter (25%) of the children were not on track in their early childhood development. Seventy‐one percent were not developmentally on track in the literacy‐numeracy domain, 27% were not in the social–emotional and smaller percentages were not in learning (9%) and physical (1%) domains. There was a significant negative association between maternal parity and ECDI (adjusted odds ratio [AOR] 0.95; 95% CI: 0.91–0.99). Attendance at early childhood education programmes was significantly associated with early childhood development (AOR 1.73; 95% CI: 1.47–2.03). Also, female children, those who were not stunted, located in rural areas, received parental stimulation activities, lived in relatively wealthy households or had mothers who had received secondary or further education were more likely than others to be on track of early childhood development. Conclusions: Early childhood development is negatively correlated with maternal parity. The literacy‐numeracy domain constitutes the major developmental delay. Programmes for parental awareness should be widely expanded. [ABSTRACT FROM AUTHOR]

Background: Recently in Australia, access to culturally safe developmental practices for Aboriginal and Torres Strait Islander families has been enhanced by the availability of a culturally appropriate developmental screening tool, the Ages and Stages Questionnaire – Talking about Raising Aboriginal Kids (ASQ‐TRAK). This paper aims (i) to describe the uptake of the ASQ‐TRAK developmental screening tool in Aboriginal Community Controlled Organizations and mainstream services in Australia and (ii) to explore the extent to which organizations using the ASQ‐TRAK have engaged training for staff. Methods: A retrospective review of ASQ‐TRAK sales and training records from January 2015 to May 2020 to determine the ASQ‐TRAK distribution by jurisdiction and service type and the number of services that have engaged training. Results: Five hundred ASQ‐TRAK kits have been distributed across 77 agencies. Of those, 100 kits (20%) have been purchased by Aboriginal Community Controlled Organizations. Most have been distributed in the Northern Territory (NT) (178, 36%), Western Australia (165, 33%) and South Australia (64, 13%). Of the 15 ASQ‐TRAK training workshops, nine have been in the NT. Of the 196 practitioners trained, 25 were identified as facilitators for their organization. Conclusion: Despite substantive research translation across Australia, with evidence of its acceptability in different contexts, most Aboriginal Community Controlled Organizations have not yet accessed the ASQ‐TRAK, and most organizations have not participated in training. There is an imperative to progress knowledge translation to improve quality and accessibility of culturally appropriate developmental care. Adequately resourced ASQ‐TRAK implementation support is needed to ensure sustainable implementation at scale. [ABSTRACT FROM AUTHOR]

Background: Children experiencing critical illness or injury may require admission to a paediatric intensive care unit (PICU) to receive life‐sustaining or life‐saving treatment. Studies have explored the experience of parents with a child in PICU but tend to focus on subgroups of children or specific healthcare systems. Therefore, we aimed to undertake a meta‐ethnography to draw together the published research. Methods: A systematic search strategy was developed to identify qualitative studies, which had explored the experiences of parents with a critically ill child treated in a PICU. A meta‐ethnography was undertaken following the structured steps of identifying the topic; undertaking a systematic search; reading the research; determining how the studies relate and translate into each other; and synthesising and expressing the results. Results: We identified 2989 articles from our search and after a systematic series of exclusions, 15 papers remaining for inclusion. We explored the original parent voices (first order) and the interpretation of the study authors (second order) to identify three third‐order concepts (our interpretation of the findings), which related to technical, relational and temporal factors. These factors influenced parents' experiences, providing both barriers and facilitators to how parents and caregivers experienced the time their child was in the PICU. The dynamic and co‐constructed nature of safety provided an analytical overarching frame of reference. Conclusion: This synthesis demonstrates novel ways in which parents and caregivers can contribute to the vital role of ensuring a co‐created safe healthcare environment for their child when receiving life‐saving care within the PICU. [ABSTRACT FROM AUTHOR]

Background: The use of screen time for young children has been hotly debated among experts. This study explored the utilization of screen time among mothers with young children during the COVID‐19 pandemic. The objective of this study was to understand maternal motivation for utilizing screen time and how mothers have engaged in screen time since the beginning of the pandemic. Method: This paper uses a sample of n = 25 mothers who participated in an in‐depth interview about parenting during the COVID‐19 pandemic. The team utilized a thematic analysis approach to qualitatively code the transcripts. All analyses were conducted in Dedoose 8.3, and all transcripts were coded by three independent researchers to enhance rigour. Results: Five main themes emerged from the interviews: (1) harbouring screen guilt versus letting it go, (2) managing full‐time work and full‐time parenting, (3) prioritizing mental sanity, (4) socially distant supports demand screen time and (5) screens can have positive uses, too. Conclusion: During the COVID‐19 pandemic, mothers have resorted to screen time use to cope with increased stress and challenges. However, mothers have also found positive uses for screen time, such as connection with extended family members, peer interaction and educational activities. Findings highlight the need to differentiate screen time use by quality and to update formal screen time guidelines considering changing roles of technology. [ABSTRACT FROM AUTHOR]

Background: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication. Methods: Qualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh‐uS) project was analysed to look for reasons for stopping medication. Semi‐structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re‐entered adult services later (n = 21). Results: Reasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services. Conclusions: A multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long‐term prospects and quality of life for these young people. Possible approaches include access to non‐pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions. [ABSTRACT FROM AUTHOR]

Background: Parental self‐efficacy describes parents' self‐perceived competence in fulfilling their roles. The Parenting Sense of Competence Scale (PSOC) is one of the most commonly used self‐report instruments, allowing for parental self‐efficacy measurement. Methods: This paper summarizes the results of three studies (total N = 2088) conducted to examine factor structure, internal consistency, test–retest reliability and criterion validity of the Polish version of PSOC (PSOC‐PL). The studies were carried out among parents (mothers and fathers) of typically developing 14‐ and 15‐year‐olds (Study 1, n = 1404) as well as among parents of typically developing children aged 6–16 (Study 2, n = 248), parents of typically developing children and children with a diagnosis of autism spectrum disorder (Study 3, n = 436, ages ranged from 6 to 13). Results: Confirmatory factor analysis (Study 1) demonstrated an acceptable fit of the theorized two‐factor model, with theorized Satisfaction and Efficacy factors. The subscales' internal consistencies were satisfactory across all studies (Studies 1–3), and PSOC's test–retest reliability (Study 2) over a 3‐week interval was very high. Parents of children with developmental disorders (Study 3) reported lower efficacy than parents of typically developing children. Conclusions: The results of these three studies attest that the Polish version of PSOC is a reliable and valid measure of parental self‐efficacy beliefs. [ABSTRACT FROM AUTHOR]

While children in general are usually seen as a societal priority, many children are disadvantaged by marginalization, with adverse effects on health and development. Following feasibility studies, the European Commission has now adopted a formal Child Guarantee of service access. This paper links the Feasibility Studies to other reports on the need to address marginalized and institutionalized children. The problems in identifying and quantifying such children are outlined, as are the challenges of planning for these groups of children and the difficulty of finding universal definitions and data. This European Union initiative is timely, given that around a quarter of European children are marginalized, while the effects of Covid‐19 will add to this marginalization. [ABSTRACT FROM AUTHOR]

Background: Advancing physical therapy interventions for children and young people is a high research priority. This includes research to describe and specify the control condition, typically 'current care', for effectiveness trials. This paper aims to identify physical therapy outcomes commonly targeted, and intervention techniques and approaches commonly used, by physiotherapists working with children (aged 2–19 years) with mobility limitations in the United Kingdom. Methods: A cross‐sectional survey. Participants were recruited through the interactive Chartered Society of Physiotherapy members‐only online discussion forum, the Association of Paediatric Chartered Physiotherapists, direct emails and snowball sampling within the authors' professional networks and Twitter. Data were collected using a structured online questionnaire and analysed using descriptive statistics. Results: We received 146 responses, 95/146 (65.1%) of which were fully complete. Therapists reported targeting 367 unique outcome constructs, of which 193 (52.6%) mapped onto activities and participation (e.g. moving around using equipment, maintaining body position and walking), 158 (43.1%) on body functions (e.g. muscle strength, joint mobility and gait functions), 11 (3.0%) on body structure (e.g. muscle length) and 3 (0.8%) on environmental factors (e.g. access home environment, access school environment and family confidence). The most commonly used interventions related to postural management (115/133 of respondents, 86.4%) and exercise therapy (116/137, 84.67%) and included techniques such as 'use equipment' (118/137, 86.1%), 'instruct how to do something' (117/137, 85.4%), 'practice' (105/137, 76.6%) and 'stretch' (99/137, 72.3%). Conclusions: In designing trials, current care can be described as a combination of biomechanical and physiological techniques and approaches targeted at body functions and through that to activity and participation. Although some environmental behaviour change techniques and strategies were reported, the explicit use of these in current care appears limited. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Background: Secondary education has lifelong implications for wellbeing. We evaluated associations between the duration and timing of special health care needs (SHCN) across childhood and academic achievement in secondary school. Methods: Cohort design. The structured modelling approach was used to evaluate life‐course models for associations between the duration and timing of SHCN (measured using a two‐item SHCN screener across ages 4–5, 6–7, 8–9 and 10–11 years) and Grade 7 (median age 12.5 years) reading and numeracy achievement. Linear regressions were fitted for each life‐course model: four critical period models (each including SHCN exposure in one period), one sensitive period model (including SHCN exposure in all periods) and two strict accumulation models (including the duration of SHCN exposure in linear form then categorical form). Interactions of SHCN with child sex and family socio‐economic status (SES) were examined. Results: Of 3734 children, 1845 were female. The number of children with SHCN was 434 (11.7%), 458 (12.9%), 534 (14.7%), 551 (15.4%) at 4–5, 6–7, 8–9 and 10–11 years respectively. For both outcomes, the linear strict accumulation model fitted best, and interactions of SHCN with sex and SES were non‐significant. The average decrease in school achievement z score (95% confidence interval) per period of having SHCN was 0.04 (−0.07 to −0.02) for reading and 0.08 (−0.11 to −0.05) for numeracy. Conclusions: A longer duration of SHCN from age 4–11 years has small‐sized cumulative associations with poorer Grade 7 reading and numeracy achievement. Each period of SHCN between 4 and 5 and 10–11 years was associated with nearly 0.05 and 0.1 of a standard deviation reduction in Grade 7 reading and numeracy scores respectively, and these associations did not appear to differ across sex or SES. These findings suggest that children with persistent SHCN are at risk of academic deficits and should receive focused interventions. [ABSTRACT FROM AUTHOR]

Family‐centred care (FCC) has been established as a best practice model for child disability services internationally. However, further empirical support is required to explore the operationalization and efficacy of FCC, in the absence of a universal practice model. This review aimed to identify the key processes and outcomes of FCC in early intervention (EI) settings and the factors that impact FCC. A systemic review was conducted exploring the processes and outcomes of FCC delivered to children predominantly aged 0–6 years with disabilities/suspected disabilities and families as part of EI or early services. The search procedure was informed by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines (Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke (2006, 2014). Data were presented as per the standards for reporting qualitative research (SRQR; O'Brien et al., 2014). Forty‐two studies were included. The majority (90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes. Processes were largely reported as qualitative data and/or subscales of the Measure of Processes of Care (MPOC; King et al., 1995), which were subsequently collated. Findings indicated eight key operational processes and corresponding outcomes. Variables that hinder or facilitate FCC included family/professional characteristics, family/service resources, and parent attitudes, engagement and agency. FCC was largely conceptualized as the application of services to children and their families. Critical perspectives on FCC are discussed. It is hoped this research will contribute to the development of a framework of FCC in EI to inform services provided to young children with complex needs and their families and future research. [ABSTRACT FROM AUTHOR]

Aims: We evaluated the feasibility and effectiveness of utilising government health supervisors to train and supervise primary health care workers (HWs) in community clinics to deliver parenting sessions as part of their usual duties. Methods: We randomly allocated 16 unions in the Mymensing district of Bangladesh 1:1 to an intervention or control group. HWs in clinics in the eight intervention unions (n = 59 health workers, n = 24 clinics) were trained to deliver a group‐based parenting intervention, with training and supervision provided by government supervisors. In each of the 24 intervention clinics, we recruited 24 mothers of children aged 6–24 months to participate in the parenting sessions (n = 576 mother/child dyads). Mother/child dyads attended fortnightly parenting sessions at the clinic in groups of four to five participants for 6 months (13 sessions). We collected data on supervisor and HW compliance in implementing the intervention, mothers' attendance and the observed quality of parenting sessions in all intervention clinics and HW burnout at endline in all clinics. We randomly selected 32 clinics (16 intervention, 16 control) and 384 mothers (192 intervention, 192 control) to participate in the evaluation on mother‐reported home stimulation, measured at baseline and endline. Results: Supervisors and HWs attended all training, 46/59 health workers (78%) conducted the majority of parenting sessions, (only two HWs [3.4%] refused) and mothers' attendance rate was 86%. However, supervision levels were low: only 32/57 (56.1%) of HWs received at least one supervisory visit. Intervention HWs delivered the parenting sessions with acceptable levels of quality on most items. The intervention significantly benefitted home stimulation (effect size = 0.53SD, 95% confidence interval: 0.50, 0.56, p < 0.001). HW burnout was low in both groups. Conclusion: Integration into the primary health care service is a promising approach for scaling early childhood development programmes in Bangladesh, although further research is required to identify feasible methods for facilitator supervision. [ABSTRACT FROM AUTHOR]

Background: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent–child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently. Methods: Fourteen parents were interviewed using semi‐structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision‐making process to undertaking an intensive multi‐disciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes. Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat—if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents. Conclusions: Parenting a tube‐fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support. [ABSTRACT FROM AUTHOR]

The next 1000 days – the period from 2 to 5 years of age – has been highlighted as a key developmental stage in the life‐course. A mapping review was conducted to categorize existing literature on interventions in the next 1000 days that promote key developmental outcomes, including publications between 1990 and July 2020. A total of 805 intervention studies were included for data extraction in the review. The number of intervention studies has increased substantially from 2010. Most interventions were from high‐income countries, with few (5%) from low‐ and lower‐middle‐income countries. Interventions including typically developing children (n = 593, 74%) were mostly (80%) implemented in early childhood care and education (ECCE) settings, with 15% taking place in the home or with families and 5% in community or healthcare settings. Children's literacy and language outcomes were the target of 27% of these interventions, while 25% of interventions targeted early childhood development more holistically or targeted multiple developmental domains. Social–emotional development and social skills were the target of 15% of interventions, motor development 13%, numeracy 8% and cognitive development 8%. For children with any developmental delay, disability, disease or exposure (n = 212), interventions frequently targeted Autism Spectrum Disorder (24%), language or literacy delays (21%), developmental delays or disability more generally (20%); 16% targeted behavioral (or conduct) problems; and 5% targeted attention deficit hyperactivity disorder. Almost half (49%) took place in ECCE settings; 24% occurred in the home or with families, or in community (13%) and/or healthcare (14%) settings. This review highlights the need for more intervention research in low‐ and middle‐income countries and for interventions supporting development in the next 1000 days. While the evidence base for interventions to promote development in this age group continues to expand, the most vulnerable children are not benefiting from this evidence. [ABSTRACT FROM AUTHOR]

Background: The Activity Scale for Kids (ASK) assesses the physical disability of children (5 to 15 years old) with neurological, orthopaedic or rheumatic diseases. The objective of this study was to translate and cross‐culturally adapt the ASK for Brazilian Portuguese and assess the validity and reliability of the instrument. Methods: A total of 67 children and adolescents with musculoskeletal, neurological or rheumatic diseases participated in the study. We evaluated the comprehension of the pre‐final version of the questionnaire in 24 participants and reliability and validity in the other 43 participants. The translation and adaptation of ASK to Brazilian Portuguese followed guidelines from previous studies. The validity of the Brazilian Portuguese version of the ASK was verified through Spearman's correlation with the Pediatric Quality of Life Inventory™ Version 4.0 (PedQL). Intraclass correlation coefficient verified inter‐ and intra‐evaluator reliability, while internal consistency was assessed using Cronbach's alpha. Scores were used to assess the standard error of the mean and minimal detectable change. Results: The Brazilian Portuguese version of the ASK presented excellent reliability, internal consistency, agreement and moderate correlation with PedsQL (0.522, P < 0.001) between ASK performance and PedsQL; 0.537, P < 0.001 between ASK capacity and PedsQL. Conclusion: The Brazilian Portuguese version of the ASK has good validity and reliability and may be used by professionals and researchers to assess the functioning of children and adolescents with disabilities. [ABSTRACT FROM AUTHOR]

Background: Parents' beliefs and behaviours affect children's nutrition, eating behaviours, and health outcomes; however, little is known about parents' experiences and perspectives on establishing a healthy diet with young children. Methods: A community‐recruited sample of 391 parents of young children (under age 5) completed an anonymous cross‐sectional online survey assessing the degree to which their children met recommendations outlined in Australian nutrition guidelines, perceived barriers to establishing a healthy diet with their child, and interest in receiving tips/information about establishing healthy eating habits with their children. Descriptive statistics illustrated proportions of children adhering to recommendations. Thematic analysis was used to analyse qualitative data. Results: Adherence to recommended nutrition guidelines varied across age groups. Most children across all age groups had water as their main drink, routinely consumed a variety of fruit, and consumed sweet drinks or fast foods only rarely. In contrast, less than half of 2‐ and 3‐year‐olds regularly consumed a variety of vegetables. The proportion of children consuming discretionary "treat" foods increased sharply over the first 2 years of life, and two thirds of 2‐, 3‐, and 4‐year‐olds consumed treat foods a few days per week or more. Parent‐reported barriers to establishing a healthy diet with young children included child behavioural factors (e.g., dislike of vegetables), parental influences (e.g., lack of time), family dynamics (e.g., influence of extended family) and external influences (e.g., external environment). Parents were most often interested in ways to modify child behaviour and information about child nutrition. Conclusions: Parents cite child behavioural issues as a major barrier to establishing a healthy diet with young children. Behavioural interventions that provide parents with information and support on how to establish a healthy diet with young children, as opposed to educational interventions focusing mainly on what children should be eating, may better meet families' needs. [ABSTRACT FROM AUTHOR]

Background: There is mixed evidence regarding the impact of interactive digital devices on child development. Tentatively some studies suggested that the use of digital devices may correlate negatively with language, executive function, and motor skills. However, attempts to amalgamate this evidence has been limited related to the available number of experimental and cohort studies that have evaluated the impact of digital technology use on child development. We conducted this review to determine the impact of interactive digital devices on child development among children aged 7 years or younger. Interactive technology has been defined as methods, tools, or devices that users interact with in order to achieve specific tasks. Data source: To carry out this systematic review, databases CINAHL, MEDLINE, Embase, PsychINFO, Scopus and Google Scholar were searched for relevant studies. Study selection: We used the Joanna Briggs Institute methodology for systematic reviews. Data extraction: Data extraction and synthesis was carried out by two reviewers and checked by a third reviewer. Studies were stratified into tiers depending on the level of evidence provided and the domain of development assessed. Results: Fifty‐three studies were eligible for inclusion in the review, 39 Tier 1 (randomized controlled trials and quasi‐experimental studies) and 16 Tier 2 (descriptive studies). Children's use of interactive digital technology was positively associated with receptive language and executive function and negatively associated or unrelated to motor proficiency. Other critical aspects informing the evidence, such as dose of exposure, intensity, or duration, were inconsistently reported, making estimates of exposure tentative and imprecise. Conclusion: The studies included in this review were predominantly correlational or comparative in nature and focuses on cognitive domains of learning rather than a specific developmental outcome. It is difficult to generalize our findings beyond the digital devices or applications that have been evaluated by earlier studies. The contextual factors that may moderate the relationship require elaboration in future studies. [ABSTRACT FROM AUTHOR]

Introduction: Culturally relevant developmental screening is one of the best ways to appropriately identify developmental delays and disabilities in children as early as possible across diverse cultural backgrounds. This study aimed to adapt the Parents' Evaluation of Developmental Status (PEDS) tools for a low‐income community in South Africa by using a detailed multiphased cultural and contextual adaption process. Method and Results: A three‐phase mixed‐method design relying on triangulation of data was used. Data were collected at an immunization clinic in a low‐income community in Mamelodi, South Africa. Phase 1 was a focus group discussion with 11 community participants. The topics explored the possible changes to the PEDS tools to make them more relevant to the community. Phase 1 informed Phase 2 where 12 early childhood development experts achieved consensus through a two‐round survey on a modified Delphi method. In Phase 3, a draft of the PEDS tools‐SA was presented to the authors of the PEDS tools for final approval. Of 55 questions that were adapted for the PEDS tools‐SA, two original questions (3.6%), 14 questions from the expert suggestions (25.4%) and 39 from the community participant's suggestions (71%) were included. A final version of the PEDS tools‐SA was created. Conclusion: This study used a systematic method to adapt the PEDS tools to create the culturally appropriate PEDS tool‐SA for a low‐income community in South Africa, informed by community stakeholders' views from the first step. This resulted in a high‐quality adaptation process that is more likely to result in a tool that is more acceptable to caregivers from a low‐income South African community. [ABSTRACT FROM AUTHOR]

Background: Prior to the COVID‐19 pandemic, nearly 60% of children under 5 years of age were cared for in out‐of‐home child care arrangements in the United States. Thus, child care provides an opportunity to identify and address potential child maltreatment. However, during the pandemic, rates of reporting child maltreatment decreased—likely because children spent less time in the presence of mandated reporters. As children return to child care, states must have regulations in place to help child care providers prevent, recognize and report child maltreatment. However, little is known about the extent to which state regulations address child maltreatment. Therefore, the purpose of this cross‐sectional study was to assess state regulations related to child maltreatment and compare them to national standards. Method: We reviewed state regulations for all 50 states and the District of Columbia for child care centres ('centres') and family child care homes ('homes') through 31 July 2021 and compared these regulations to eight national health and safety standards on child maltreatment. We coded regulations as either not meeting, partially meeting or fully meeting each standard. Results: Three states (Colorado, Utah and Washington) had regulations for centres, and one state (Washington) had regulations for homes that at least partially met all eight national standards. Nearly all states had regulations consistent with the standards requiring that caregivers and teachers are mandated reporters of child maltreatment and requiring that they be trained in preventing, recognizing and reporting child maltreatment. One state (Hawaii) did not have regulations consistent with any of the national standards for either centres or homes. Conclusions: Generally, states lacked regulations related to the prevention, recognition and reporting of child maltreatment for both centres and homes. Encouraging states to adopt regulations that meet national standards and further exploring their impact on child welfare are important next steps. [ABSTRACT FROM AUTHOR]

Purpose: The Viking Speech Scale is used to classify speech performance in children with cerebral palsy (CP). A Dutch‐language version (VSS‐NL) has recently become available. This study aimed to determine the reliability and validity of the VSS‐NL and the association with motor type of CP, Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS) and Communication Function Classification System (CFCS). Methods: A total of 90 children with CP, recruited throughout the Netherlands, took part in the study. VSS‐NL classifications by speech and language therapists unfamiliar (SLT1) and familiar (SLT2) with the child, parents and physicians were compared. Convergent and discriminant validity were determined with the Intelligibility in Context Scale‐Dutch (ICS‐NL) and the Computer Based Instrument for Low Motor Language Testing (C‐BiLLT). Inter‐ and intrarater reliability were determined by weighted Kappa (ƙw). Validity and associations between VSS‐NL and GMFCS, MACS and CFCS were determined with Spearman's coefficient. Association between VSS‐NL and motor type of CP was determined with Fisher's exact test. Results: Interrater reliability was excellent between SLT1‐SLT2 (ƙw = 0.93, 95% confidence interval [CI] 0.87–0.99), good between SLT1‐parent (ƙw = 0.71, 95% CI 0.60–0.83), SLT1‐physician (ƙw = 0.70, 95% CI 0.58–0.81), SLT2‐parent (ƙw = 0.71, 95% CI 0.57–0.84), SLT2‐physician (ƙw = 0.73, 95% CI 0.62–0.85) and parent‐physician (ƙ = 0.72, 95% CI 0.60–0.85). Intrarater reliability was excellent for SLTs familiar and unfamiliar to the child (ƙw = 1.00, 95% CI 1.00–1.00), and very good for physicians (ƙw = 0.89, 95% CI 0.75–1.00) and parents (ƙw = 0.72, 95% CI 0.62–1.00). Convergent validity was very strong (r = −0.81, p < 0.001) and discriminant validity moderate (r = −0.56, p < 0.001). Association with motor type of CP was significant (χ2 = 27.558, p < 0.001) and strong with GMFCS (r = 0.62, p < 0.001), MACS (r = 0.63, p < 0.01) and CFCS (r = 0.69, p < 0.001). Conclusion: The VSS‐NL is a reliable and valid system to classify speech performance in children with cerebral palsy. Classifications can be performed by SLTs, parents and physicians. [ABSTRACT FROM AUTHOR]

Background: The Parenting for Lifelong Health for Young Children (PLH‐YC) programme aims to reduce violence against children and child behaviour problems among families in low‐ and middle‐income countries (LMICs). Although the programme has been tested in four randomised controlled trials and delivered in over 25 countries, there are gaps in understanding regarding the programme's implementation fidelity and, more generally, concerning the implementation fidelity of parenting programmes in LMICs. Aims: This study aims to address these gaps by examining the psychometric properties of the PLH‐YC‐Facilitator Assessment Tool (FAT)—an observational tool used to measure the competent adherence of PLH‐YC facilitators. Examining the psychometric properties of the FAT is important in order to determine whether there is an association between facilitator competent adherence and programme outcomes and, if correlated, to improve facilitator performance. It is also important to develop the implementation literature among parenting interventions in LMICs. Methods: The study examined the content validity, intra‐rater reliability, and inter‐rater reliability of the FAT. Revision of the tool was based on consultation with programme trainers, experts, and assessors. A training curriculum and assessment manual was created. Assessors were trained in Southeastern Europe and their assessments of facilitator delivery were analysed as part of a large‐scale factorial experiment (N = 79 facilitators). Results: The content validity process with PLH‐YC trainers, experts, and assessors resulted in substantial improvements to the tool. Analyses of percentage agreements and intraclass correlations found that, even with practical challenges, assessments were completed with adequate yet not strong intra‐ and inter‐rater reliability. Conclusions: This study contributes to the literature on the implementation of parenting programmes in LMICs. The study found that the FAT appears to capture its intended constructs and can be used with an acceptable degree of consistency. Further research on the tool's reliability and validity—specifically, its internal consistency, construct validity, and predictive validity—is recommended. [ABSTRACT FROM AUTHOR]

Background: The Uganda version of Pediatric Evaluation of Disability Inventory (PEDI‐UG) was culturally adapted and validated from the PEDI‐US, a tool used to evaluate the functional capability of children with or without disability aged 6 months to 7.5 years in the areas of self‐care, mobility and social domains. A group of Ugandan occupational therapists with experience of using PEDI‐UG participated in this study to explore the question: What do Ugandan occupational therapists say about the utility and value of the PEDI‐UG for children with disabilities? Methods: A qualitative research design was chosen to explore the participants' viewpoints concerning the utility and value of the PEDI‐UG for children with disabilities. Purposive sampling was used to recruit health professionals for the focus group discussions. Focus group discussions were carried out with 18 occupational therapists and nurses. Thematic analysis was performed to establish patterns and themes. Results: Several challenges concerning the contextual use of PEDI‐UG were reported. For example, PEDI‐UG being culturally adapted in two languages (English and Luganda) makes it difficult for health professionals to use it for children whose caregivers are non‐English or non‐Luganda speakers. In addition, participants reported adapting the way they asked the assessment questions, struggling with how they interpreted the scores and observing the child's skills if required during PEDI‐UG interviews with caregivers. Conclusions: The findings of this study suggest that health professionals are challenged with the use of the PEDI‐UG assessment in diverse cultural contexts and/or languages. These challenges are important considerations for the PEDI‐UG translation in different Uganda cultural languages and training health professionals on the use and value of PEDI‐UG for children with disabilities. [ABSTRACT FROM AUTHOR]

Background: Violence against children (VAC) is a global public health problem, and parenting programmes are a key strategy to reduce VAC at home. We developed and evaluated a preschool‐based, early childhood, violence prevention, parenting programme (the Irie Homes Toolbox) in Jamaica and reported significant reductions in parents' use of VAC [Effect size (ES) = −0.29] and increases in parents' positive practices (ES = 0.30). This study presents qualitative findings on the mechanisms of action of the programme. Methods: As part of a cluster randomized trial, 115 parents from nine preschools participated in the Irie Homes Toolbox parenting programme. The programme consisted of eight 90‐min sessions with groups of six parents and focussed on strengthening parent–child relationships, understanding children's behaviour, using appropriate discipline strategies and understanding and managing emotions. We conducted in‐depth, semi‐structured interviews with a stratified random sample of 28 parents (two to four parents per school) and with nine preschool teachers (one teacher per preschool). Topic guides were developed to explore participants' perspectives of the mechanisms of action of the programme. All interviews were audio‐recorded and transcribed, and data were analysed using the framework approach. Results: The most salient direct pathways to reduced VAC by both parent and teacher reports were through parents' use of alternative strategies to manage child misbehaviour and through improved parent well‐being, especially parents' self‐management skills. Other factors leading to reduced VAC by parents, reported by both parents and teachers, included self‐identification as an 'Irie parent', use of proactive parenting strategies and improved child behaviour. Parents reported that the main factors leading to continued use of VAC were their inconsistency in using positive discipline strategies and poor emotional self‐regulation. Conclusion: Reports from participating parents and preschool teachers indicate that contents related to parental self‐management and how to use positive discipline strategies to manage child misbehaviour were important factors on the pathway to reduced VAC. [ABSTRACT FROM AUTHOR]

The review presents a summary of available evidence about transition care of ADHD patients from all service users' perspectives. Common barriers, and suggestions for improvement ADHD of transition care, were extrapolated from qualitative research, including case notes studies, and were exposed. A comprehensive search of the PubMed, Embase, PsychInfo and Web of Science databases for articles published up to October 2021 was conducted to summarize recent evidence on the experiences of all stakeholders involved in the transition process. Reviews, other chronic conditions and different meaning of transition were excluded. Authors extracted data and assessed study quality independently. Findings were discussed taking into consideration barriers and suggestions from all service users' perspectives. Findings from 23 studies with different context and methods were collected and summarized. Most of the studies were conducted in UK, using interviews and questionnaires, and addressed to the physicians. The lack of information about ADHD as a condition and about transition process were the barriers most reported, while joint working and sharing transition protocols were the suggestions pointed out by all stakeholders. Despite different perspectives, all stakeholders exposed similar needs. The review reveals an evident need for defining and evaluating the effectiveness of transition programmes from child to adult ADHD services. [ABSTRACT FROM AUTHOR]

Background: Legacy building is a developmentally grounded, trauma‐informed and family‐centred psychosocial intervention designed to bolster patient and family resilience through collaborative activities and meaning making. However, little is known about the effects of these interventions, partially because of a lack of clarity regarding how children of different developmental levels understand the concept of legacy. Therefore, this study explored the ways in which hospitalized children defined the concept of legacy. Methods: Semi‐structured interviews were conducted with 45 hospitalized children (ages 6 to 18 years) on the acute and critical care units of an academic children's medical centre. Interviews were audio‐recorded and transcribed verbatim; transcripts were independently coded by at least two members of the research team using an inductive, line‐by‐line approach; and codes were categorized and assembled into four overarching themes, resulting in a developmental typology of the concept of legacy. Results: Participants described legacy as (1) concepts, actions or feelings motivated by the future; (2) represented through both tangible and intangible means; (3) informed by personal, educational, experiential and ideological sources; and (4) experienced as good, bad or neutral. Conclusions: The findings of this study demonstrate that hospitalized children are aware of and can articulate an emerging concept of legacy – one that mirrors the progression of cognitive complexity shaped by their unique personal life and healthcare experiences. The developmental typology presented in this study can be a useful starting point for clinicians as they present and facilitate legacy building interventions throughout a child's hospital stay. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to examine the trajectories of condition and independent living self‐management in youth with spina bifida (SB). Methods: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS‐II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self‐management and its subscales (condition and independent living) were estimated using linear mixed‐effect models as a function of respondents' demographics. Results: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty‐seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self‐management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self‐management depended on sex; only males demonstrated increasing growth (β̂ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self‐management when compared with White (β̂diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino (β̂diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. Conclusion: This study provides evidence of differences in growth of self‐management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self‐management behaviours over time in young adults with SB can identify subgroups in need of further study. [ABSTRACT FROM AUTHOR]

Aim: This systematic review synthesized quantitative evidence from the past decade of the effectiveness of peer support programmes in improving the well‐being and/or quality of life (QoL) for parents/carers of children with disability/chronic illnesses. Background: For children with disability or chronic illness, parents/carers are critical in enabling or limiting their child's development. The parent's/carer's ability to provide the necessary responsive and structured care is impacted by several factors, including their own personality, skills, resources and well‐being. Peer support programmes often aim to build parent/carer and/or family capabilities. Although studies and reviews have found positive benefits arising from such programmes, the impact of such programmes, specifically on well‐being and QoL, is unknown Results: Quantitative studies published between 2011 and 2020 that examined the impact of programmes with a significant peer support component on parental/carer well‐being, QoL and/or distress were identified from four databases and were searched and yielded 3605 articles, with 13 articles meeting the inclusion criteria. The results suggested that peer support is effective for reducing distress and improving the well‐being and QoL among parents of children with disabilities; however, the evidence is limited by a high risk of bias in the included studies. Conclusions: Although existing evidence suggests that programmes for parents/carers with a significant peer support component are beneficial for well‐being and QoL, rigorous methodologies are needed in the future to gain a better understanding of the benefits of such programmes. [ABSTRACT FROM AUTHOR]

Introduction: Dietary habits may be associated with adolescents' health and behavior. However, previous findings are inconsistent and often unadjusted for sociodemographic confounders. The aim of this study was to investigate (1) whether dietary habits (consumption of fruits, vegetables, sweets, soft drinks, breakfast, and family meals) cluster among adolescents and (2) how these clusters associate with a range of health, well‐being, and behavior outcomes in a large population‐based sample of adolescents. Methods: The study included adolescents (n = 7529; n = 3891 [51.7%] girls; mean [standard deviation] age = 14.9[2.1] years) from the 2018 Luxembourg Health Behaviour in School‐aged Children study. We used cluster analysis to define clusters of dietary habits (consumption of fruits, vegetables, sweets, soft drinks, breakfast, and family meals) and logistic regression analyses to assess the cross‐sectional associations of the clusters with health, well‐being and behavior, adjusted for age, gender, family affluence, and migration background. Results: Cluster analysis yielded five clusters of dietary habits: (1) healthy, (2) family meal and breakfast skippers, (3) sugar consumption, (4) unbalanced diet, and (5) unhealthy. The healthy cluster was associated with better health and positive mental health and behavior, whereas the less healthy clusters were associated with worse health, mental health problems, and risk behavior. Conclusion: Findings suggest that healthy dietary habits associate with positive health and behavior, whereas unhealthy dietary habits associate with health problems and risk behavior during adolescence. More research is needed to investigate the underlying mechanisms. Interventions should include dietary habits as a component of lifestyle modification to improve adolescents' health, well‐being, and behavior. [ABSTRACT FROM AUTHOR]

Objectives: This study examined the mental health of siblings of children with physical illness (PI), with or without co‐occurring mental illness. Methods: The sample included children aged 2 to 16 years with a chronic PI and their aged‐matched healthy siblings (n = 169 dyads). Physical–mental comorbidity (PM) was present if children screened positive for ≥1 mental illness on the Mini International Neuropsychiatric Interview for Children and Adolescents. Parents completed the Strengths and Difficulties Questionnaire (SDQ) to measure child and sibling mental health. Results: Within child–sibling dyads, siblings of children with PI had significantly worse mental health related to conduct problems (d = 0.31), peer problems (d = 0.18) and total difficulties (d = 0.20). Siblings of children with PM had significantly better mental health related to emotional problems (d = 0.42), hyperactivity/inattention (d = 0.23) and total difficulties (d = 0.32). Siblings of children with PI had similar mental health compared with child population norms used in the development of the SDQ. In contrast, siblings of children with PM had significantly worse mental health across all SDQ domains, with the exception of prosocial behaviour. After adjusting for parent psychopathology and family functioning, no statistically significant differences between siblings of children with PM versus siblings of children with PI were found. Conclusions: Differences in mental health exist between children with PI or PM versus their healthy siblings. However, differences between siblings of children with PI versus siblings of children with PM can be explained by parental and family factors (e.g. marital status, education and income). Findings reinforce family‐centred care approaches to address the needs of children with PI or PM and their families. [ABSTRACT FROM AUTHOR]

Background: Deafblindness is a rare condition, and its prevalence has been reported to be approximately 1 in 27 000 new‐borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Because little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic. Methods: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0 and 18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities. Results: Of the 6268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). Social interaction and communication was the dominant category, covering 24 of the 32 included studies. Conclusions: This review concludes that there are a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness. [ABSTRACT FROM AUTHOR]

Background: Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity while aiming to improve gross motor function for children with cerebral palsy (CP). Little research has explored the complexity of parental decision‐making experiences surrounding SDR surgery and required rehabilitation. The aim was to explore parental experiences and expectation in the decision‐making process around the SDR operation, physiotherapy treatment and outcomes. Method: Qualitative methods using in‐depth, semi‐structured interviews were used. Eighteen parents (11 mothers and 7 fathers) participated whose child had SDR and completed 2‐year post‐operative rehabilitation. Data were analysed using thematic analysis. Results: Decision making involved an interacting process between the 'parental information seeking experience', 'influence of professional encounters and relationships' and 'emotional and social aspects'. Despite underlying uncertainties about outcomes, parental drivers of expectations and aspirations for their child preceded and sustained this decision‐making process. A foundational narrative of 'wanting no regrets' resolved their decision to undertake SDR. Outcomes did not always match expectations, and parents moved away from a position of idealism, which was driven in part by parental information seeking including overly optimistic media representation. Conclusion: Universally, parents expressed they had 'no regrets' on their decision, yet many felt a mismatch between expectation and outcomes of SDR surgery. A greater understanding of the complex nature of SDR decision making is required to help improve family preparedness and provide support from clinicians to enable balanced discussions in parental decision‐making. [ABSTRACT FROM AUTHOR]

Objective: This systematic review explored the effectiveness of using physical activity (PA) interventions to enhance psychological well‐being and reduce psychological ill‐being (e.g., anxiety and depression) in children aged six to 11 years old from the general population. Methods: Electronic databases were searched for studies published between January 2005 and June 2020: Web of Science, ProQuest Psychology Journals, PsycINFO, Pub Med, ASSIA, CINHAL PLUS, SPORTDiscus, EMBASE and Wiley Online Library. Search terms included 'physical activity intervention', 'psychological well‐being' and 'child*'. After removing duplicates, 11 390 studies were independently screened by two authors based on inclusion/exclusion criteria and assessed for risk of bias. Results: A total of 23 studies were narratively synthesized and categorized into four domains: Quality of Life (QOL), body image, self‐esteem and psychological ill‐being. Evidence was provided for the impact of PA interventions in improving QOL, body image and self‐esteem. Despite the positive effect on psychological well‐being, evidence for a reduction in the frequency and severity of symptoms associated with psychological ill‐being in children is less clear. Conclusions: Reviewed studies support the use of PA interventions in enhancing the psychological well‐being of children in school and community settings. More research is warranted to understand the impact of PA interventions on reducing psychological ill‐being in children from the general population. [ABSTRACT FROM AUTHOR]

Background: Developmental coordination disorder (DCD) can significantly impact body structures and functions, activities, participation and contextual factors. Using a scoping review methodology, we aimed to identify the characteristics or signs that can have an early impact on the development and functioning of children with DCD between 0 and 6 years. Methods: We searched the Medline, Cochrane and PEDro databases. The screening of the 1580 articles obtained was conducted independently and in duplicate. From the included articles, among others, we extracted results that reported the early developmental characteristics of children at high risk or diagnosed with DCD, the components of the International Classification of Functioning (ICF) and the F‐Words studied in the results or the agents involved in the evaluation. Results: Seventeen articles were included in the review. From them, a set of early signs of DCD—general and specific—were collected that reflected the existence of restrictions in daily life activities from an early age and in certain routines, such as eating, dressing, grooming or playing. The most studied components of the ICF were activities and participation, with functioning being the most studied F‐word. Conclusions: Detection of activity limitations and restrictions in participation between 0 and 6 years in children with DCD is possible. Recognition of parental concerns and early assessment could facilitate the follow‐up of children at high risk for DCD and their inclusion in screening programs that include standardized tools for their diagnosis. [ABSTRACT FROM AUTHOR]

Objective: Adolescence is a critical period of transition from paediatric to adult health care, but readiness for this transition has been described as low in the general adolescent population. We aimed to investigate whether transition readiness improved over time among US adolescents and to examine associations between demographic and clinical characteristics and transition readiness over time. Methods: Deidentified caregiver‐reported repeated cross‐sectional data from the 2016–2020 National Survey of Children's Health were analysed for caregiver‐reported measures of transition readiness among adolescents age 12–17 years. Logistic regression was used to identify trends in transition readiness and change over time in factors associated with this outcome. Results: Among 55 022 adolescents represented in the five survey years, the proportion meeting a composite definition of transition readiness increased from 15% (95% confidence interval [CI]: 14%, 16%) in 2016 to 19% (95% CI: 17%, 20%) in 2020. After multivariable adjustment, each additional year was associated with 12% greater odds of caregiver‐reported transition readiness (95% CI: +8%, +15%; P < 0.001), and transition readiness was more likely for girls, older adolescents and adolescents with special health care needs. Associations between adolescent characteristics and transition readiness did not change over the study period. Conclusions: Population‐level caregiver‐reported transition readiness among US adolescents has increased but remains low. Factors previously associated with transition readiness (age, sex, race and ethnicity, family income and presence of special health care needs) have persisted over recent years. [ABSTRACT FROM AUTHOR]

Background: Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed 'dual disability', is complex. It requires a family‐centred approach, with collaboration among health, disability and social services and early planning. Aim: To describe carer perspectives of transition to adult care and the outcomes of a transition support intervention, Fearless, Tearless Transition, for adolescents with dual disabilities piloted at a tertiary children's hospital. Methods: Carers of adolescents with a dual disability were invited to complete a survey at the commencement of their participation in the Fearless, Tearless Transition model, and again at the conclusion of the project. Within this intervention, carers and adolescents were encouraged to attend dedicated transition clinics and participate in a shared care general practitioner (GP) and paediatrician process. Results: One hundred and fifty‐one carers of adolescents with dual disabilities were included in Fearless, Tearless Transition. Of this cohort, 138 adolescents and their carers received support in a dedicated transition clinic with 99 carers completing the initial survey at the commencement of the model. Eighty‐two per cent of carers reported moderate to high levels of anxiety about transitioning from paediatric to adult care with 39% feeling 'unprepared' about transition. Eighty‐one per cent reported having inadequate access to respite care with 47% reporting a lack of access to services in the community and 56% expressing dissatisfaction with their GPs. One hundred and two families participated in the shared care process with 80 GPs and 33 paediatricians. Twenty‐two carers completed the second survey reporting a modest but significant improvement in preparedness for transition to adult care. Conclusion: This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early, centralized transition planning, consistent methods of assessing adolescent and carer needs and shared care. [ABSTRACT FROM AUTHOR]

Background and Objectives: Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS describes parents' reactions to their child's illness and medical treatment and can lead to post‐traumatic stress symptoms. This is the first study to describe the experiences and impact of PMTS among parents of CMC. Methods: We conducted semi‐structured interviews with 22 parents of CMC. Reflexive thematic analysis was used to generate themes that described the experiences of PMTS and potential contributing factors in the healthcare setting. Themes were validated by study participants. Results: Parents experienced a spectrum of events and circumstances that impacted PMTS. These corresponded to three major themes: (a) the distinctive context of being the parent of a CMC, (b) interactions with healthcare providers that can hurt or heal and (c) system factors that set the stage for trauma. The consequences of repeated PMTS were a common point of emphasis among all the themes. Parents identified numerous changes that could mitigate PMTS such as acknowledgement of trauma and provision of proactive mental health support. Conclusions: Our study highlights the issue of PMTS among parents of CMC and presents opportunities to mitigate their traumatic experiences. Supporting the integration of trauma‐informed care practices, increasing awareness of PMTS and advocating for parental mental health services could better support parents and families. [ABSTRACT FROM AUTHOR]

Background: Among youth with psychiatric disorders, the transition from child to adult mental health services is a period of vulnerability to discontinuous care and service disengagement. Regular assessment of transition readiness has been identified as a core component of transition planning, contributing to successful care transitions. The Transition Readiness Assessment Questionnaire (TRAQ) 5.0 is a 20‐item questionnaire that measures transition readiness in youth preparing to transition to adult care. Although the TRAQ has been validated and used across many health settings, it has not been validated in youth with primarily mental health concerns. The objective of this study was to validate the TRAQ for use among youth accessing mental health services. Methods: This study used the Longitudinal Youth in Transition Study baseline cohort, which consists of 237 clinically referred youth (aged 16–18 years) receiving outpatient mental health treatment. Psychometric evaluation of the TRAQ 5.0 included confirmatory factor analysis (CFA), assessment of internal consistency, testing convergent validity using the Dimensions of Emerging Adulthood (IDEAS) and Difficulty in Emotional Regulation (DERS) scales, criterion validity using a question on whether the participant had talked about transition with their clinician and known‐group testing based on age. Results: The CFA indicated adequate fit of the five‐factor TRAQ structure. The overall scale (=.86) and three of the subscales demonstrated adequate internal consistency. As hypothesized, overall TRAQ scores were higher for youth who had discussed transition and those aged 18. Small correlations were found between the overall TRAQ score and measures of developmental maturity (IDEAS) and emotional awareness (DERS); however, certain subscales did not demonstrate correlation with these constructs. Conclusions: The TRAQ 5.0 appears to be valid tool to assess the transition readiness of youth in outpatient mental health services. Additional work needs determine whether findings are similar among specific mental health conditions, including substance use disorders and psychotic disorders. [ABSTRACT FROM AUTHOR]

Background: Children born to migrant parents have higher rates of language difficulties, intellectual disability and autism. This study explores the relationship between migration, ethnicity and reasons for early years referrals to community paediatrics in a diverse multi‐cultural population in a city in south west England. Methods: Observational retrospective study from a community paediatric service serving a multi‐cultural urban population from June 2012 to February 2016. We tested associations of ethnicity and parental birth origin with reason for referral (developmental or non‐developmental) for children under 5 years old and estimated crude rate ratios for referrals using population census data. Results: Data were available for 514 children (52% white or mixed race, 16% Asian, 21% African diaspora, and 11.5% Somali); 53% had two UK‐born parents while 22% had two migrant (non‐UK‐born) parents. Referrals were for developmental reasons in 307 (60%) including 86 for possible autism. Parental birth origin and ethnicity were associated with reason for referral (p < 0.001). Children from African diaspora, Asian or Somali backgrounds had more than twice the rate (rate ratio [RR] 2.37, 95% CI 1.88–2.99, p < 0.001) of developmental referrals compared with white or mixed‐race children. Children of Somali or African diaspora ethnicity were, respectively, six‐times (RR 5.99, 95% CI 3.24–10.8, p < 0.001) and four times (RR 4.23, 95% CI 2.44–7.29, p < 0.001) more likely to be referred for possible autism spectrum than their white or mixed‐race peers. Developmental referral as a proportion of all referrals was twice as high among children with one migrant parent (20.4%) and three times as high among children with two migrant parents (29.5%), compared with children whose parents were both UK‐born (10.7%). Conclusions: This study supports the importance of ethnicity and parental migration as factors in young children experiencing developmental difficulties, especially concerns about social communication or autism. [ABSTRACT FROM AUTHOR]

Background: Parent self‐efficacy (PSE), parents' confidence in their ability to successfully raise their children, has proved to be a powerful direct predictor of specific positive parenting practices. The aim of this study was to validate the Italian version of the Tool to Measure Parenting Self‐Efficacy (TOPSE) using data from the questionnaires previously completed in a controlled before–after study conducted in 2015 to evaluate a newsletter programme to help improve parenting. Mothers and fathers of newborns were asked to complete the TOPSE at the child's birth (t0), at 6 months (t1) and at 12 months (t2): 265 TOPSE questionnaires were collected at t0 (43%), 158 at t1 (26%) and 188 at t2 (31%). Methods: We measured internal reliability using Cronbach's alpha for each of the eight domains of the TOPSE. The intracluster correlation coefficient (ICC) was used to evaluate the external reliability only for parents with more than one child. Responsiveness was measured by testing the ability of the questionnaire to detect differences between groups and times that we expected to be measurable, based on consolidated findings in the literature. Mean scores of PSE improved from t0 to t2 (Hypothesis 1), PSE was lower at baseline for first‐time parents than for those with multiple children (Hypothesis 2) and the improvement from t0 to t2 was stronger for first‐time parents than for parents with multiple children (Hypothesis 3). Results and Conclusion: Based on our sample of questionnaires, the Italian version of the TOPSE was reliable for almost all of the domains except for Emotion, Self‐acceptance and Learning, which could be refined by re‐framing or dropping one item. External reliability was moderate, bearing in mind that the questionnaire was repeated at different times over 12 months, during which parents normally change. Responsiveness was good, especially for the Emotion and Empathy domains. [ABSTRACT FROM AUTHOR]

Background: Teledelivery of rehabilitation services has been proposed as a cost‐effective option for supporting children with neurodisability and their families. However, little is understood of the conditions that support uptake of telehealth in paediatric rehabilitation, what is delivered during telehealth or perceptions of its outcomes. The aim of this study was to identify the context, process and outcomes of telehealth for children with neurodisability and their families. A secondary objective was to identify if variations in these aspects of telehealth occurred for Māori, the indigenous people of New Zealand. Method: A mixed‐methods, three phase, realist evaluation identified context‐mechanism‐outcome configurations (CMOcs) of telehealth. In Phase 1, the Determinants of Implementation Behaviour Questionnaire indicated factors affecting practitioner uptake of telehealth (Context). In Phase 2, a casenote audit identified 'practitioner input' during telehealth (Mechanism). Phase 3 interviews with practitioners and parents explored 'parent response' to telehealth and practitioner and parent perceptions of its value (Mechanism and Outcomes). Subgroup analyses for Māori were planned. Results: From Phase 1, practitioners (29/37, 78%) intended to use telehealth; however, few did so regularly (7/37, 22%). Positive experiences of telehealth were described by all practitioners (n = 5) and families (n = 7) in Phase 3. CMOcs explained that practitioners' offering of telehealth occurred when practitioners were confident, valued access to therapy over the familiarity of in‐person delivery, and when practitioners used coaching‐style communication. Parents were receptive to telehealth when they trusted practitioners, felt listened to and were offered telehealth as a choice. When telehealth occurred, access to therapy was timely and more consistent than in‐person delivery. Child outcomes appeared to be positive. Confidence in offering telehealth to Māori was low. Conclusions: Initiatives to improve uptake of telehealth in paediatric rehabilitation should focus on creating conditions for practitioner implementation. Training in telehealth should include engagement with Māori. Adequate workspace and workplace culture change are required if telehealth is to be offered beyond the current 'early adopters'. [ABSTRACT FROM AUTHOR]

Background: Caregivers of children with autism spectrum disorder (ASD) have been shown to have unique mental health vulnerabilities that community support may buffer. Positive caregiver mental health can stimulate family resilience behaviours, such as strong communication and problem‐solving. Further, community support has been found to be related to caregiver mental health, as well as improved child functioning. The current study aims to investigate caregiver mental health as a mediator between community support and family resilience in families of a child with an autism spectrum disorder. Methods: Data obtained from caregivers of 654 children with a reported diagnosis of ASD were utilized from the 2016 National Survey of Children's Health (NSCH) public database. Results: Community support was positively correlated with family resilience and caregiver mental health. Bivariate correlations indicated significant positive associations between community support and family resilience. Caregiver mental health, significantly, partially mediated the relationship between community support and family resilience. Conclusions: The present study provides important insight into fostering caregiver health as a strategy to promote family resilience behaviours. Interventions designed to address family resilience behaviours among families of children with ASD should focus on ways that positively impact caregiver mental health. [ABSTRACT FROM AUTHOR]