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Background Aims Methods & Procedures Main Contribution Conclusions & Implications WHAT THIS PAPER ADDS What is already known on the subject What this paper adds to the existing knowledge What are the practical and clinical implications of this work? There are many children with neurodisability who are unable to rely on speech to communicate and so use a range of augmentative and alternative communication (AAC) methods and strategies to get their message across. Current instruments designed to measure the outcomes of speech and language therapy interventions lack specific attention to communication outcomes that are valued by non‐verbal children with neurodisability, their families and support networks. This qualitative meta‐synthesis was conducted to identify valued communication outcomes to inform the next stage of developing a novel outcome measure.To systematically identify and synthesise the qualitative evidence about which communication outcomes non‐verbal children with neurodisability, their family members, healthcare professionals and educators think are important to achieve, specifically which communication outcomes are most valued by: (1) non‐verbal children with neurodisability; (2) parents or other family members of non‐verbal children with neurodisability; and (3) professionals who work with non‐verbal children with neurodisability.A systematic search of bibliographic databases and the grey literature was undertaken to identify qualitative studies that included evidence of views expressed by children, family members, healthcare professionals and educators on outcomes in relation to the communication of non‐verbal children with neurodisability. All papers meeting the inclusion criteria were quality appraised using the Critical Appraisal Skills Programme Qualitative checklist, although none were excluded on this basis. The data synthesis involved organising coded data into descriptive themes which were then synthesised into analytical themes.We found 47 papers containing qualitative data meeting the inclusion criteria from research situated in 14 countries. The views of 35 children, 183 parents, six other family members, 42 healthcare professionals and 18 educators are represented in the review. The included studies contained very few data reported by children themselves; most data were provided by adults, especially parents. Three main analytical themes were identified: Experiences of communication and expectations; adapting to and acceptance of AAC; and becoming an autonomous communicator.This meta‐synthesis brings together the limited qualitative research findings about what parents, professionals and children consider are important communication outcomes for non‐verbal children with neurodisability. The synthesis identifies key gaps in our knowledge about the perspectives of children and their siblings. This synthesis will inform primary research to understand valued communication outcomes in this group, and ultimately the development of a patient‐reported outcome measure (PROM) that can be used to demonstrate the effect of interventions, at both clinical and service levels. Studies of children with cerebral palsy and autism spectrum disorder indicate that at least 25% of children with these conditions are non‐verbal. Studies on the health outcomes of children with neurodisability have identified that communication is rated as important by parents and health professionals. There is an evidence gap about which communication outcomes are important to non‐verbal children, their families and the people who work with them. This is the first synthesis of data that relates to communication outcomes for non‐verbal children with neurodisability. This qualitative meta‐synthesis identifies from previous research studies the communication outcomes valued by children who are non‐verbal, their parents or other family members, and the professionals who work with them. The findings will be used to shape further primary research and the development of a novel patient‐reported communication outcome measure for non‐verbal children with neurodisability. It is anticipated that this will be used by clinicians to measure the effect of their interventions. Clinicians should reflect on parents’ experiences of communication with their child before discussing potential outcomes with them. Gaining insight into the lived experience of communication for non‐verbal children and their families will help healthcare professionals to understand which goals are important to them and why. Few studies have specifically asked which communication outcomes are important for non‐verbal children with neurodisability. Further exploration is needed to determine which communication outcomes non‐verbal children and their families would like to see included in outcome measures used by clinicians. [ABSTRACT FROM AUTHOR]

AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONA powerful aphorism states: “If I hadn’t believed it, I wouldn’t have seen it!” This challenging notion reminds us how strongly we are influenced by prevailing ideas, and how we interpret things according to current fashions and teachings.In this paper we present and discuss contemporary perspectives concerning childhood-onset disability and the evolving nature of how people are thinking and acting. We illustrate these ideas by reminding readers of how we have all traditionally been trained and acculturated to think about many dimensions of neurodevelopmental disability (“What?”); reflect on the impact of these ways of thinking in terms of what we have conventionally “seen” and done (“So What?”); and contrast those traditions with contemporary concepts that we believe or know impact the field (“Now What?”).Many of the concepts discussed here will be familiar to readers. In taking this analytically critical perspective we aim to illustrate that by weaving these individual threads together we are able to create a coherent fabric that can serve children with childhood-onset NDD, their families, service providers, the community, and policy-makers. We do not purport to offer a comprehensive view of the whole field.We encourage readers to consider the integration of these new ways of thinking and acting in our still-evolving field of “childhood-onset disability”.21st-century thinking about childhood-onset neurodisability builds on WHO’s ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention.21st-century thinking about childhood-onset neurodisability builds on WHO’s ICF framework for health, expanding well beyond traditional primary biomedical foci on diagnosis and management and toward a focus on functioning and belonging.New emphases put family at the centre, attending to family voices and prioritizing family wellbeing as targets for intervention equal to a focus on the child.There is strong emerging evidence to support the value and impact of these broader approaches on overall family functioning and wellbeing.These developments are primarily conceptual rather than technical: they emphasize child and family development, parenting, promotion of functioning, and a life-course approach from the start of intervention. [ABSTRACT FROM AUTHOR]

Introduction: In families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability. Methods: As part of a patient‐oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi‐structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis. Results: Nineteen sibling participants (median age = 19 years, range = 14–33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities. Conclusion: Siblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity. [ABSTRACT FROM AUTHOR]

Erythropoietin (EPO) is a proposed drug for the treatment of neonatal hypoxic-ischemic encephalopathy (HIE). Multiple studies have linked its use, either as a monotherapy or in conjunction with therapeutic hypothermia (TH), with improved neonatal outcomes including death and neurodisability. However, there is also evidence in the literature that raises concerns about its efficacy and safety for the treatment of neonatal encephalopathy (NE). We searched MEDLINE, Cochrane CENTRAL, and Embase for both observational studies and randomized controlled trials (RCTs) investigating the effectiveness of EPO in treating NE. Only studies in which at least 300 U/kg of EPO was used and reported any one of the following outcomes: death, death or neurodisability, and cerebral palsy, were included. Seven studies with 903 infants with the diagnosis of NE were included in our meta-analysis. EPO did not reduce the risk of death or neurodisability (risk ratio 0.68 [95% confidence interval [CI]: 0.43 to 1.09]) (P = 0.11). Similarly, the risk of cerebral palsy was not reduced by the administration of EPO (risk ratio 0.68 [95% CI: 0.33 to 1.40]) (P = 0.30). The risk of death was also not reduced at any dose of EPO regardless of the use of TH. The results of our meta-analysis do not support the use of EPO for the treatment of neonatal encephalopathy. However, future large-scale RCTs are needed to strengthen these findings. [ABSTRACT FROM AUTHOR]

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Background Neurodisability describes a broad set of conditions affecting the brain and nervous system which result in functional limitations. Children with neurodisability have more hospital admissions than their peers without neurodisability and higher rates of school absence. However, longitudinal evidence comparing rates of hospital admission and school absence in children with neurodisability to peers without neurodisability throughout school is limited, as is understanding about whether differences are greatest for planned care (e.g., scheduled appointments) or unplanned care. This study will describe rates of planned and unplanned hospital admissions and school absence due to illness and medical reasons throughout primary school (Reception to Year 6, ages 4 to 11 in England) for children with neurodisability and all other children, using linked individual-level health and education data. Methods We will use the ECHILD (Education and Child Insights from Linked Data) database, which links educational and health records across England. We will define a primary school cohort of children who were born in National Health Service-funded hospitals in England between 1st September 2003 and 31st August 2008, and who were enrolled in Reception (age 4/5) at state-funded schools. We will use hospital admissions records to identify children who have recorded indicators of neurodisability from birth up to the end of primary school (Year 6, age 10/11). Results We will describe rates of planned and unplanned hospital admissions and health-related school absence for three groups of children: those with a neurodisability indicator first recorded before beginning primary school, those with neurodisability first recorded during primary school, and those without a record of neurodisability before end of primary school. Conclusions We will further explore whether differences between these group vary across primary school years and by socioeconomic and demographic characteristics.

Background: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. Objectives: (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. Results: Mean age at death was 10.3 years (range: 5 – 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range:.1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. Conclusion: 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted. [ABSTRACT FROM AUTHOR]

Both school exclusion and neurodisability are prospective markers for increased risk of subsequent contact with criminal justice system in general and justice-involved samples. However, relationships between school exclusion, neurodisability, and age at first conviction have received minimal attention. Age at first conviction is an important outcome, as justice system contact is criminogenic, so people convicted at a younger age are at risk of becoming entrenched in the system. This issue was addressed with data collected from 3035 convicted male adults, who completed the Do-IT Profiler screening assessment in HMP Parc (Wales, UK). Multiple school exclusions were associated with earlier first convictions, with those excluded once, 2–3 times, and 4 or more times being first convicted 3, 5, and 6 years earlier on average than the never-excluded cohort. Of the excluded cohort, 45% were sent to a Pupil Referral Unit (PRU) (a facility for children excluded from mainstream school). They were first convicted an average of 2 years younger than those who were excluded but never sent to a PRU, and an average of 6 years younger than those who were never excluded. This suggests that being sent to a PRU is associated with earlier first convictions than exclusion alone. Each standard deviation increase in neurodisability (indexed by lower scores on a functional skills screener, used here as a proxy for neurodisability) was associated with being 0.5 years younger at first conviction. Finally, school exclusion was correlated with scores on the functional skills screener, suggesting that school exclusion could be a potential mechanism for the criminalisation of children with neurodisability. These findings elucidate associations between school exclusion (including PRU referral), poor functional skills indicative of neurodisability, and criminalisation at a younger age in prison populations.

It is increasingly clear that the law operates in a way that burdens the very cognitive resources needed to navigate it. One aspect of this systemic cognitive burden is the legal actor–lay person communication dyad; these dyads are the behavioral orientation through which the vast majority of lay persons experience the law, and they are marked by cognitive-communication features that create disparity between the legal actor and the lay person, increasing the lay person's risk of poorer-quality communication behavior. This risk is likely greater for persons with neurodisability, which increases the likelihood of impaired cognitive functioning and impaired communication behaviors; however, interactions among neurodisability, cognitive communication, and legal dyads are not well understood. To characterize these interactions, this article models social-legal cognitive communication within the context of neurodisability, describes the cognitive causes and consequences of uneven communication dyads, and explores structural conceptual frameworks within the law that enable and compound systemic communication risk. Finally, the article considers fundamental cognitive-behavioral contradictions revealed by the analysis and discusses what implication such an analysis might have on attempts to reform, or more ideally recreate, the law and its interconnected social-political systems. Such interdisciplinary scientific analysis is a key step in reducing structural communication burdens, resolving systemic contradictions, and improving legal outcomes for persons with neurodisabilities.

Introduction: The growing years are paramount for bone growth and mineral accrual. Children with long-term neurological condition (LTNC) have multiple risk factors for poor bone health and fragility fractures. In Singapore, this has not been studied systematically. Therefore, we aimed to evaluate the risk factors associated with fragility fractures in children with LTNC. Methods: In this study, the search for fragility fractures was done by a retrospective review of patients with LTNC on follow-up in the paediatric neurology clinic and patients who presented with fracture to the paediatric orthopaedic clinic. Information on patients' demographics, medical history, intervention, biochemical bone markers and fracture history was collected. Results: In a tertiary clinic population of 136 patients with LTNC, 65% were dependent on mobility (Gross Motor Function Classification System [GMFCS] V), 60% were underweight and 60% were fed via gastrostomy or nasogastric tube, or were on oral pureed diet. Furthermore, 60% were on anticonvulsants. The fracture rate was 3% in this population and was associated with low-impact activities such as transfer and dressing. Only 7.4% and 33% of the patients had undergone measurements of vitamin D and calcium levels, respectively. Conclusion: The local prevalence of fragility fractures in children with LTNC on follow-up at the neurology clinic was found to be 3%. Risk factors identified were limited ambulation and compromised nutritional status associated with feeding difficulty. Recommendations to optimise bone health in children with LTNC were made. These include promoting weight-bearing activities, looking out for underweight children, avoiding vitamin D deficiency and ensuring adequate calcium intake. [ABSTRACT FROM AUTHOR]

Emily White,1 Mohamed Mutalib1,2 1Department of Paediatric Gastroenterology, Evelina London Children’ Hospital, London, UK; 2Faculty of Life Sciences and Medicine, King’s College London, London, UKCorrespondence: Mohamed Mutalib, Department of Paediatric Gastroenterology, Evelina London Children’ Hospital, London, SE1 7EH, UK, Email Mohamed.mutalib@gstt.nhs.ukAbstract: Pediatric neurodisability describes functional limitations in children with varied severity and complexity often attributed to brain or neuromuscular abnormalities. The life expectancy of children with neurodisability is improving, but many will require significant medical support. The gastrointestinal tract is usually affected in children with neurodisability and can lead to a wide range of symptoms. In gastrointestinal (GI) dystonia, a newly coined term, feeding will trigger a distressing dystonia and symptoms can improve with cessation of feed. Parenteral nutrition (PN) is often viewed as a viable option in severe GI dystonia or when enteral feeding does not support sufficient nutrition. The use of PN in children with severe neurodisability is complex. It involves an intricate interplay between medical, psychological and ethical factors. In the absence of a universally agreed guidance on the use of PN in this cohort, paediatricians should maintain the individual need of the child at the centre of the decision-making process and work closely with families and other healthcare professionals before initiating or withholding PN in children with severe neurodisability. In this article, we discuss the complex and multifaceted approach to the use of PN in children with severe neurodisability and aimed to explore the medical, psychological and ethical aspect dilemmas facing clinicians looking after children with declining gut function who may require PN support.Keywords: pediatric, neurodisability, parenteral nutrition, medical ethics

Background: Qualitative studies have shown that peer support is of value to parents and other caregivers of children with neurodisability. However, this value likely cascades to other areas such as family well‐being. There are various forms and functions of peer support, and how they operate is not well understood for this population. Models of family resilience theory can be helpful to situate the impact of parent‐to‐parent peer support processes within a family context to further explain how this type of assistance is beneficial. Our study aimed to describe the specific pathways by which peer support may contribute to resilience in families and how processes embedded in this type of support can enrich family resilience theory. Methods: Using reflexive thematic analysis, we examined transcripts and notes from 19 interviews with parents of children with neurodisabilities regarding their involvement in a large (n = 300) and predominantly volunteer‐based peer support network in western Canada. Using an inductive coding method, we identified patterns in the data. Following a process of reflection and discussion, we then used a deductive approach to situate themes within a family resilience theoretical framework. Results: We identified three main themes from the data: Modifying belief systems through shared lived experience; navigating resources; and negotiating resources and engaging in social discourses. These themes confirm previous findings in the literature, and the subthemes demonstrate how they may contribute to broader family‐level experiences beyond that of the parent. Conclusion: We present a model for understanding how processes in peer support can be understood within a family resilience theoretical framework. We also propose that the reciprocity embedded within peer support builds upon previous concepts within family resilience theory. Future studies can use this theoretical framework to guide research questions to further explore the effects of peer support at the family and community levels. [ABSTRACT FROM AUTHOR]

To systematically map available evidence for school-based interventions led by allied health (i.e., occupational therapy, physiotherapy, and/or speech and language therapy). We searched for studies in pre-school, primary, secondary, or post-secondary settings, published 2004–2020. We coded study, population, and intervention characteristics. Outcomes were coded inductively, categorised, and linked to the International Classification of Functioning, Disability, and Health. We included 337 studies (33 countries) in an interactive evidence map. Participants were mainly pre-school and primary-aged, including individuals with neurodisability and whole-school populations. Interventions targeted wide-ranging outcomes, including educational participation (e.g., writing, reading) and characteristics of school environments (e.g., educators' knowledge and skills, peer support). Universal, targeted, and intensive interventions were reported in 21.7%, 38.9%, and 60.2% of studies, respectively. Teachers and teaching assistants delivered interventions in 45.4% and 22.6% of studies, respectively. 43.9% of studies conducted early feasibility testing/piloting and 54.9% had ≤30 participants. Sixty-two randomised controlled trials focused on intervention evaluation or implementation. In the United Kingdom, future research should take forward school-based allied health interventions that relate directly to agreed research priorities. Internationally, future priorities include implementation of tiered (universal, targeted, intensive) intervention models and appropriate preparation and deployment of the education workforce. Allied health professionals (occupational therapists, physiotherapists, and speech and language therapists) work in schools supporting children and young people affected by neurodisability but the content, impact, and cost-effectiveness of their interventions are not well-understood. We systematically mapped the available evidence and identified that allied health school-based interventions target highly diverse health-related outcomes and wider determinants of children and young people's health, including educational participation (e.g., literacy) and characteristics of the school environment (e.g., educators' knowledge and skills). Our interactive evidence map can be used to help stakeholders prioritise the interventions most in need of further evaluation and implementation research, including tiered models of universal, targeted, and intensive allied health support. Teachers and teaching assistants play a central role in delivering allied health interventions in schools – appropriate preparation and deployment of the education workforce should therefore be a specific priority for future international allied health research. [ABSTRACT FROM AUTHOR]

Parenting programs for families of children with neurodisabilities are recommended as standard care because they often target child behavior problems that are tied to both child and parent well-being. Despite the family environment being the context in which skills learned through parenting programs are implemented, study outcomes typically focus on child and parent factors without consistently examining the family unit. To identify how family-level outcomes are measured in the context of parenting programs for families of children living with neurodisabilities and comorbid behavior problems. Scoping review methodology was used to identify and synthesize evidence related to parenting programs for families of children living with neurodisabilities that included some measurement of family well-being. Included in this review were 29 studies of parenting programs that involved some measure of family well-being. The results highlight the diversity in which family-level outcomes and family characteristics are conceptualized. General family functioning was the most frequently measured construct, though several disability-specific family measures were also identified. Future research on parenting programs should include family-level outcomes beyond child and parent well-being. Researchers are encouraged to contextualize results based on the underlying theoretical frameworks that help to explain the family-related construct being measured. [ABSTRACT FROM AUTHOR]

Abstract Patient navigation (PN) represents a branch of service delivery traditionally aimed at coordinating disjointed care services for patients with particular health conditions (e.g., cancer, HIV, diabetes). Over time, this approach has been extended to various social and health contexts, including most recently to children with neurodisability and their families. In this context, PN involves the provision of information, advice, education, and emotional support, coordination of services both within and across sectors, and the work is guided by person- and family-centred principles of practice. This manuscript documents the proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs, which took place on January 18 and 19, 2021 and was developed in collaboration with a Provincial Advisory Group. Our Summit brought together over 120 individuals, including researchers, government personnel, service providers, educators, healthcare workers, and family advocates. As part of the event, attendees learned from families with lived experience navigating the British Columbian (BC) service system, from BC Children’s Hospital Research Institute investigators, and from exemplar providers who deliver navigation services in various contexts (e.g., locally, regionally, and provincially). Attendees also participated in various engagement opportunities, and collaboratively identified directions for developing a future community of navigation and related services in BC.

Several systematic reviews have examined parent training programs for families of children with autism spectrum disorder (ASD). The present review expands on this literature by describing the components, delivery methods, and level of parent involvement in parent training programs that target families of children with any neurodisability and comorbid disruptive behavior or other mental health problem. Following a scoping review protocol, the search strategy included randomized controlled trials of parent training programs conducted with families of children with neurodisabilities and comorbid disruptive behavior or mental health problems. Study characteristics, program content, delivery methods, and theoretical frameworks were extracted from eligible studies. A total of 22 articles were included from the 453 full-text articles initially screened. Thirteen different programs fell into two general categories based on whether they targeted child disruptive behavior or anxiety. Analysis of the content yielded five themes: child skill enhancement, parenting as enacted, parenting as experienced, disability-related parenting, and parent–child relationships. The theoretical underpinnings were identified, when possible, from each study. Parent training programs for parents of children with neurodisabilities targeting child anxiety involved parents in a complementary role in treatment while those targeting disruptive behavior involved parents in a primary role in creating behavior change. We suggest that the extent of parent involvement in interventions be guided by theory rather than diagnosis of the child. Parents of children living with neurodisabilities play a key role in delivering interventions to address comorbid mental health or behavioral problems. Parent training programs for families of children with neurodisabilities vary in relation to their aims, involvement of parents in delivering interventions, disability-specific content, and delivery methods. When referring families, rehabilitation professionals should be aware of aspects of child, parent, and family relational well-being targeted by parent training programs and, when feasible, give families a choice of the style of program to meet their needs. [ABSTRACT FROM AUTHOR]

Management of gait-related problems in children and young people with Cerebral Palsy (CYPwCP) is complex and requires an interprofessional approach. Irrespective of underlying mechanisms, instrumented gait analysis (IGA) can provide quantification of gait to support clinical decision-making for CYPwCP when planning treatment interventions. This scoping review aimed to determine the impact of instrumented gait analysis (IGA) on treatment decision-making for CYPwCP, paying particular attention to interprofessional decision-making. PubMed, EMBASE, Web of Science and Scopus databases were searched from inception to October 2019 for studies including CYPwCP age<25 years. The PRISMA ScR protocol was followed, and Quality was assessed with the Downs and Black (D&B) scale. Influences on decision-making were coded according to the International Classification of Functioning, Disability and Health for Children and Youth framework (ICF-CY). Seventeen studies (1144 patients, 2.8–23 years) of varying quality (mean D&B = 17.2, range = 11–26) were included. Studies considered IGA influence at three decision-making stages 'Clinical Planning', ' Treatment Performed' and ' Follow up'. Child and Family, and Clinician and Service-centred factors had a high impact on engagement with IGA recommendations. IGA guided recommendations can differ from initial clinical plans, and often lead to modification of the treatment ultimately performed. The effect on individual patients' outcomes when treatment recommendations based on instrumented gait analysis are followed is not yet clear and warrants further research. The differences in clinicians' engagement with IGA recommendations occur due to an array of Child and Family, and Clinician and Service-centred factors. Overall, IGA leads to less surgical recommendations, and has the potential to influence conservative gait-related management in CYPwCP. • Instrumented gait analysis has the potential to influence conservative gait-related management of cerebral palsy. • A variety of Child and Family-centred, and Clinician and Service-centred factors influence adherence to IGA recommendations. • Instrumented gait analysis tends to recommend less surgical procedures than initial clinical plans. • Discrepancies between initial treatment plans and IGA recommendations are greater when interprofessional interventions are considered. • Gait related decision-making is a dynamic, context-sensitive process involving multiple stages and stakeholders. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic resulted in an unprecedented societal and healthcare global crisis. Associated changes in regular healthcare provision and lifestyle through societal lockdown are likely to have affected clinical management and well‐being of children/young people with neurodisability, who often require complex packages of multidisciplinary care. Methods: We surveyed 108 families of children/young people with severe physical neurodisability and multiple comorbidities to understand how the pandemic had affected acute clinical status, routine healthcare provision, schooling and family mental and social well‐being. Results: A significant proportion of families reported missing hospital appointments and routine therapy, with subsequent worsening of symptoms and function. Families additionally described worsening stress and anxiety during the pandemic, regardless of their baseline level of socio‐economic deprivation. Conclusion: This highlights the profound effect of the COVID‐19 pandemic on health and function in young people with severe neurodisabilities and emphasizes the clear need to better understand how to support this vulnerable population moving forwards. [ABSTRACT FROM AUTHOR]

Background: The prevalence of mental illness in people with cerebral palsy is higher than that of the general population. In Australia there are few mental health services that are adequately prepared to address the unique mental health concerns of people with cerebral palsy. Aim: Our aim is to raise awareness that specialist mental health services are lacking in Australia, and to urge healthcare workers to address this. Method: A brief perspective piece describing the current lack of specialist mental health services available in Australia for people with cerebral palsy. Conclusion: Our commentary emphasises the importance of addressing mental health problems in Australians with cerebral palsy. It provides actions that need to be implemented to improve the recognition and treatment of mental illness in people with cerebral palsy. [ABSTRACT FROM AUTHOR]

Abstract Background Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavioural issues. Behaviour problems in children who survive CM are poorly characterized, and the impact of caring for a child with post-CM behaviour issues has not been well-explored. Caregivers’ perceptions of and experiences with their child’s post-CM behaviour problems are reported here. Methods Semi-structured interviews were conducted with 29 primary caregivers of children who survived CM with reported behaviour issues in Blantyre, Malawi. Interviews were conducted in Chicheŵa, audio-recorded, transcribed, and translated into English. Data were coded manually, utilizing inductive and deductive approaches. Identified codes were thematically analysed. Results Post-CM behaviours reported include externalizing, aggressive behaviours and learning difficulties. Variable timescales for behaviour change onset were noted, and most caregivers reported some evolution of their child’s behaviour over time. Caregivers experienced a variety of emotions connected to their child’s behaviour and to reactions of family and community members. Caregivers who experienced discrimination were more likely to describe negative emotions tied to their child’s behaviour changes, compared to caregivers who experienced support. Conclusions Caregiver perceptions of behaviour changes in post-CM survivors are variable, and caregiver experience is strongly impacted by family and community member responses. Future educational, rehabilitation, and support-based programmes should focus on the specific types of behaviour problems identified and the difficulties faced by caregivers and their communities.

Abstract Background Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. Methods The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author. Results Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles. Conclusions This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice.

OBJECTIVES AND BACKGROUND: Children with cerebral palsy are at risk for sleep disorders, and there is a complex relationship between sleep and physical, environmental and functional factors in such children. The WHO International Classification of Functioning, Disability and Health model serves as a universal framework for describing and organizing functioning and disability. This study aimed to describe sleep disturbances in Singaporean children and youth with cerebral palsy, and develop a holistic framework for evaluating risk factors and potential management strategies for poor sleep.Methods: A cross-sectional analysis was conducted on 151 children and youth in a nationwide registry for cerebral palsy. The WHO International Classification of Functioning, Disability and Health for Cerebral Palsy Questionnaire was used to identify sleep disturbances. Risk factors analyzed were age, gender, ethnic background, financial assistance, the dominant motor feature of cerebral palsy, functional status, and comorbidities such as active epilepsy, hearing and visual impairments, generalized pain, muscle tone and involuntary contractions.Results: 46% had difficulty with sleep, with similar proportions having difficulty with amount, onset, maintenance and quality of sleep. On multivariate regression analysis, higher functional gross motor impairment as indicated by a GMFCS level of V (adjusted OR 4.24; 95% CI 1.09-19.0) and difficulty with involuntary contractions (aOR 2.80; 1.20-6.71) were significant factors for sleep difficulties.Conclusion: An ICF-based framework was useful in identifying possible contributory factors and strategies for managing poor sleep. Further studies with objective sleep measures would allow for better characterization of sleep disturbances in children and youth with cerebral palsy, and guide management. [ABSTRACT FROM AUTHOR]

This study served to conceptualize neurodisability (ND) navigation-building. Capacity-building toward wide-reaching ND navigation or help-seeking service lacks empirical evidence. Researchers widely agree that a system-wide framework is absent. While research emphasizes service-level findings, other jurisdiction- and policy-level insights are lacking. Using Collective Community Impact and Participatory Action Research, government and nongovernment organizations in three Canadian regions implemented novel cross-jurisdictional initiatives to improve navigation capacity. Family-partners and other stakeholders systematically engaged in discussions. Grounded in qualitative thematic design, we sought to unveil connections between emerging themes. These themes led to stakeholders co-constructing an intersectoral navigation-building conceptualization. A framework was essential for highlighting change-levers and potential replication in other jurisdictions/landscapes. Finally, practice and policy implications compatible with an ecosystem model are presented. [ABSTRACT FROM AUTHOR]

Patient navigation (PN) represents a branch of service delivery traditionally aimed at coordinating disjointed care services for patients with particular health conditions (e.g., cancer, HIV, diabetes). Over time, this approach has been extended to various social and health contexts, including most recently to children with neurodisability and their families. In this context, PN involves the provision of information, advice, education, and emotional support, coordination of services both within and across sectors, and the work is guided by person- and family-centred principles of practice. This manuscript documents the proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs, which took place on January 18 and 19, 2021 and was developed in collaboration with a Provincial Advisory Group. Our Summit brought together over 120 individuals, including researchers, government personnel, service providers, educators, healthcare workers, and family advocates. As part of the event, attendees learned from families with lived experience navigating the British Columbian (BC) service system, from BC Children's Hospital Research Institute investigators, and from exemplar providers who deliver navigation services in various contexts (e.g., locally, regionally, and provincially). Attendees also participated in various engagement opportunities, and collaboratively identified directions for developing a future community of navigation and related services in BC. [ABSTRACT FROM AUTHOR]

To examine household income trajectories of children with and without neurodisability over a period of 6 years. We used four cycles of the Canadian National Longitudinal Survey of Children and Youth, a longitudinal study of the development and well-being of Canadian children from birth into adulthood. While household income increased over time for both groups, families of children with neurodisability had consistently lower household income compared to families of children without neurodisability even after controlling for child and family socio-demographic characteristics. The presence of an interaction effect between parent work status and child with neurodisability at baseline indicated that among children whose parent(s) were not working at baseline, household incomes did not differ between children with and without neurodisability. The association between child with neurodisability and lower household income may not hold for all types of parents', working status is an important consideration. Findings support the health selection hypothesis that health status shapes diverging economic conditions over time: children with a ND have lower household incomes than children without a ND child across all waves of the Canadian National Longitudinal Survey of Youth. Income gaps did not increase or decrease over time; rehabilitation services and policies must consider the lower average incomes associated with raising a child with a ND. Social assistance support likely plays a key role in closing the gap, especially for non-working families. [ABSTRACT FROM AUTHOR]

Background: Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavioural issues. Behaviour problems in children who survive CM are poorly characterized, and the impact of caring for a child with post-CM behaviour issues has not been wellexplored. Caregivers' perceptions of and experiences with their child's post-CM behaviour problems are reported here. Methods: Semi-structured interviews were conducted with 29 primary caregivers of children who survived CM with reported behaviour issues in Blantyre, Malawi. Interviews were conducted in Chicheŵa, audio-recorded, transcribed, and translated into English. Data were coded manually, utilizing inductive and deductive approaches. Identified codes were thematically analysed. Results: Post-CM behaviours reported include externalizing, aggressive behaviours and learning difficulties. Variable timescales for behaviour change onset were noted, and most caregivers reported some evolution of their child's behaviour over time. Caregivers experienced a variety of emotions connected to their child's behaviour and to reactions of family and community members. Caregivers who experienced discrimination were more likely to describe negative emotions tied to their child's behaviour changes, compared to caregivers who experienced support. Conclusions: Caregiver perceptions of behaviour changes in post-CM survivors are variable, and caregiver experience is strongly impacted by family and community member responses. Future educational, rehabilitation, and support-based programmes should focus on the specific types of behaviour problems identified and the difficulties faced by caregivers and their communities. [ABSTRACT FROM AUTHOR]

Background: Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families.Methods: The scoping review was conducted according to the Joanna Briggs Institute methodology. A preliminary search was completed on PubMed (NCBI), MEDLINE (Ovid) and CINAHL (EBSCO) to identify initial search terms, upon which a full search strategy was developed and executed in MEDLINE (Ovid) and CINAHL (EBSCO). After screening records according to our inclusion and exclusion criteria, a full-text review of relevant articles was conducted and data extracted using a researcher-developed tool. Under close supervision by the research team, study selection was primarily performed by one author.Results: Of the 2597 papers identified, 33 were included in the final review. From the included papers, a total of 49 terms were extracted, 20 of which were unique. Across the diversity of terminology observed, articles provided detailed and rich descriptions characterized by four central domains, namely: (i) what navigation-related resources, supports and services aim to facilitate and (ii) provide; (iii) descriptions of their intended outcomes; as well as (iv) guiding principles.Conclusions: This scoping review addresses a gap in our knowledge related to the specification of patient navigation and related supports as applied to the specific context of children with ND and their families. Given the particular needs of this population, we propose an empirically-informed integrative model that synthesizes the findings from this scoping review. We suggest that this framework can be used as a guide to the mindful characterization of how supports aiming to connect children and families to needed service are termed and described within future research and in practice. [ABSTRACT FROM AUTHOR]

Fetal alcohol spectrum disorder (FASD) is an increasingly important issue in the New Zealand (NZ) Criminal Justice System (CJS). FASD may impact an offender's ability to participate meaningfully in the trial process, giving rise to the issue of unfitness to stand trial. Capacity to apprehend, comprehend, participate in, make decisions about and communicate within legal process intersect with the complexity and severity of charges. Courts are required to make a nuanced analysis of multiple and complex factors, merging medical and legal expertise into decisions made. We explore the nature of FASD and its implications for criminal justice in NZ. The legal and clinical issues in relation to fitness and FASD will be discussed. [ABSTRACT FROM AUTHOR]

Family violence (FV) harms communities worldwide so FV prevention strategies and effective responses are urgently needed. This article reports on FV apparent in a study which explored the experiences of people with both ABI and justice system encounters in Victoria, Australia. One hundred interviews and one focus group consulted people with ABI, their families and carers, and various stakeholder groups in the Victorian justice system in Australia. Qualitative content analysis determined dominant themes and sub-themes and the less common themes. Inductive interpretive content analysis identified themes commonly found in previous published research and themes that appeared unique to, or unanticipated in, our data, such as the FV theme upon which this article focuses. Our findings reveal that FV has adversely affected many people with ABI who came into contact with Victoria's justice system. Further, as ABI and FV often co-occur with substance abuse, mental health problems, socio-economic and many other significant disadvantages, for some FV perpetrators with an ABI, their ABI symptoms and characteristic co-morbidities may be a mitigating factor in their offending. The connection between ABI and family violence emerged as a troubling research theme. Indeed, the impact of FV on too many of our participants with an ABI compels us to call for further related research and secondary prevention programs targeted at FV victims, and offenders, living with ABI. An intersectional understanding of family violence and TBI/ABI in social ecological contexts is required to better understand brain injury at both individual and population levels. [ABSTRACT FROM AUTHOR]

Although births below 28 completed weeks' of gestation contribute to less than 1% of all preterm births globally, the impact of extreme prematurity (EPT) on neurodevelopmental outcomes across the life-course is disproportionately large. Higher rates and increased severity of neurodevelopmental impairments (NDIs) are reported among extremely preterm infants (EPIs). Cognitive skills, motor skills (manifesting as cerebral palsy) and vision are most commonly affected, with effects pervasive throughout school, adolescence and early adulthood. In addition, poorer academic outcomes and higher rates of psychiatric morbidity are seen among EPTs. Consistent improvements in EPI survival in recent years has not been matched with improvements in neurodevelopmental outcomes, especially for those born at less than 25 gestational weeks. However, over the last 20 years, several national and cross-national cohort studies have helped advance our understanding of extreme prematurity's developmental and life-course consequences. Here we provide an overview of the key findings from 13 multi-centre cohorts measuring neurodevelopmental outcomes and discuss the theoretical and epidemiological perspectives of NDIs in the context of extreme prematurity to guide communication with families and shared care decision-making. [ABSTRACT FROM AUTHOR]

Background: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. Objective: The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. Design: A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. Results: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. Limitations: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. Conclusions: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. Future work: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. Study registration: This study is registered as PROSPERO CRD42018100572. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.

Background: Neurodisability describes a broad set of conditions affecting the brain and nervous system which result in functional limitations. Children with neurodisability have more hospital admissions than their peers without neurodisability and higher rates of school absence. However, longitudinal evidence comparing rates of hospital admission and school absence in children with neurodisability to peers without neurodisability throughout school is limited, as is understanding about whether differences are greatest for planned care (e.g., scheduled appointments) or unplanned care. This study will describe rates of planned and unplanned hospital admissions and school absence due to illness and medical reasons throughout primary school (Reception to Year 6, ages 4 to 11 in England) for children with neurodisability and all other children, using linked individual-level health and education data., Methods: We will use the ECHILD (Education and Child Insights from Linked Data) database, which links educational and health records across England. We will define a primary school cohort of children who were born in National Health Service-funded hospitals in England between 1 st September 2003 and 31 st August 2008, and who were enrolled in Reception (age 4/5) at state-funded schools. We will use hospital admissions records to identify children who have recorded indicators of neurodisability from birth up to the end of primary school (Year 6, age 10/11)., Results: We will describe rates of planned and unplanned hospital admissions and health-related school absence for three groups of children: those with a neurodisability indicator first recorded before beginning primary school, those with neurodisability first recorded during primary school, and those without a record of neurodisability before end of primary school., Conclusions: We will further explore whether differences between these group vary across primary school years and by socioeconomic and demographic characteristics., Competing Interests: No competing interests were disclosed., (Copyright: © 2024 Gimeno L et al.)

Background: Young people with neurodisability experience lower levels of mental wellbeing and are at increased risk of mental illness compared with their non‐disabled peers. Social participation is recognized as a protective factor against mental illness and a potential pathway to support better mental wellbeing in neurodisability. Method: This co‐design study involved young people, parents and clinicians. First, possible interventions were identified through a rapid systematic evidence review. Any study designs were considered, which included people with a neurodisability aged 0–18 years, which evaluated a therapy intervention with social participation and mental health outcomes. Titles and abstracts were screened by two reviewers, from the included studies data were extracted and then presented using written summaries. Second, the summaries were discussed and prioritized in stakeholder groups with young people, parents and clinicians. Groups were audio recorded and framework analysis was used to identify and specify intervention elements and their delivery. Results: The evidence review identified 13,870 records, from which 43 were included. These records were published 1994–2017 and reported studies with 4–249 participants aged 16 months—18 years with a range of neurodisabilities. Five intervention approaches (social skills training, arts, sports, technology and play) were identified from the review. Two themes emerged from the stakeholder groups: intervention in the real world, feeling judged and feeling safe. The groups prioritized an intervention in real‐world social leisure contexts (i.e. existing clubs and groups) using nine key intervention elements (e.g. feedback and positive verbal reinforcement) delivered by club leaders trained by healthcare professionals using five intervention procedures (e.g. a manual and video training). Conclusion: This study has identified core elements of social participation interventions that may improve mental health outcomes in young people with neurodisability, which should now be tested. [ABSTRACT FROM AUTHOR]

The objective was to investigate the prevalence of Pseudomonas aeruginosa (PA) in patients with complex neurodisability and current treatment practice in our centre in order to inform future guidelines. A retrospective case note review was undertaken at a tertiary children's hospital. One hundred sixty-two patients (mean age 11.7 years) with a primary diagnosis of neuromuscular disease (NMD) or severe cerebral palsy (CP) and a respiratory sample sent for analysis during the study period were studied. Associations between PA in respiratory samples and diagnosis, long-term ventilation, presence of a gastrostomy or a tracheostomy, antibiotic choice, clinical deterioration and adverse events were analysed. Twenty-five (15%) had one or more PA isolate in respiratory samples. There was a significant association between PA in respiratory samples and tracheostomy (p<0.05). In 52% samples, multiple pathogens co-existed. There was no significant association between choice of antibiotic and clinical outcome but when antibiotics were changed to specific PA antibiotics during the course of the illness, all resulted in clinical improvement. Twenty-six episodes involving 8 patients with recurrent admissions involved PA organisms that were resistant to one or more antibiotics. Conclusions: A larger prospective study may establish clearer criteria for guideline development. Techniques such as point-of-care testing to identify virulent strains of PA may improve patient outcomes and prevent the development of antibiotic resistance in the future. What is Known: •Children with complex neurodisability are at increased risk of respiratory morbidity and of infection with gram-negative organisms such as Pseudomonas aeruginosa. •There are currently no guidelines to inform treatment choices in this group of vulnerable children. What is New: •15% children in this study population had Pseudomonas aeruginosa in respiratory samples during a 12-month period, the majority of whom did not require critical care treatment. Thirteen of these children had a tracheostomy in situ and 12 did not. •In those that deteriorated clinically or developed antibiotic resistant organisms, earlier detection and targeted treatment of Pseudomonas aeruginosa may have prevented deterioration. [ABSTRACT FROM AUTHOR]

Craniosynostosis, the premature closure of cranial sutures, is one of the principal causes of pediatric skull deformities. It can cause aesthetic, neurological, acoustic, ophthalmological complications up to real emergencies. Craniosynostosis are primarily diagnosed with accurate physical examination, skull measurement and observation of the deformity, but the radiological support currently plays an increasingly important role in confirming a more precise diagnosis and better planning for therapeutic interventions. The clinician must know how to diagnose in the earliest and least invasive way for the child. In the past, technological limitations reduced the choices; today, however, there are plenty of choices and it is necessary to use the various types of available imaging correctly. In the future, imaging techniques will probably rewrite the common classifications we use today. We provide an updated review of the role of imaging in this condition, through the ages, to outline the correct choice for the clinician for an early and non-invasive diagnosis. [ABSTRACT FROM AUTHOR]

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

Aim: To report disability and visual outcomes following suspected abusive head trauma (AHT) in children under 2 years.Methods: We present a retrospective case series (1995-2017) of children with suspected AHT aged ≤24 months. King's Outcome Score of Childhood Head Injury (KOSCHI) was used to assess disability outcomes at hospital discharge and at follow-up. The study used a retinal haemorrhage score (RHS) to record findings at presentation and a visual outcome score at follow-up.Results: We included 44 children (median age 16 weeks). At presentation, 98% had a subdural haemorrhage and 93% had a retinal haemorrhage. At discharge, 61% had moderate-to-severe disability, and 34% a good recovery. A higher RHS was observed in those with more disability (r=-0.54, p=0.0002). At follow-up, 14% had a worse KOSCHI score (p=0.055). 35% children had visual impairment, including 9% with no functional vision. Those with poorer visual function had a higher RHS (r=0.53, p=0.003). 28% attended mainstream school without support; 50% were in foster care or had been adopted, 32% lived with birth mother and 18% with extended family.Conclusion: It is known that injuries from suspected AHT result in high levels of morbidity; our cohort showed significant rates of disability and visual impairment. Those with higher disability at discharge and poorer visual function showed more significant retinal changes. The extent of disability was not always apparent at hospital discharge, impacting on provision of prognostic information and targeted follow-up. [ABSTRACT FROM AUTHOR]

Background: Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child’s nutrition, growth and general physical health. Objective: To examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials. Design: This was a mixed-methods study that included focus groups, surveys, an update of published systematic reviews of interventions, a systematic review of measurement properties of existing tools, evidence mapping, evidence synthesis, a Delphi survey and stakeholder workshops. Setting: The study was carried out in NHS hospitals, community services, family homes and schools. Participants: Parents of children who had neurodisability and eating, drinking and swallowing difficulties. Professionals from health and education. Young people with eating, drinking and swallowing difficulties or young people who had previously experienced eating, drinking and swallowing difficulties. Data sources: Literature reviews; national surveys of parents and professionals; focus groups with parents, young people and professionals; and stakeholder consultation workshops. Review methods: An update of published systematic reviews of interventions (searched July–August 2017), a mapping review (searched October 2017) and a systematic review of measurement properties using COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) methodology (searched May 2018). Results: Significant limitations of the available research evidence regarding interventions and tools to measure outcomes were identified. A total of 947 people participated: 400 parents, 475 health professionals, 62 education professionals and 10 young people. The survey showed the wide range of interventions recommended by NHS health professionals, with parents and professionals reporting variability in the provision of these interventions. Parents and professionals considered 19 interventions as relevant because they modified eating, drinking and swallowing difficulties. Parents and professionals considered 10 outcomes as important to measure (including Nutrition, Growth and Health/safety); young people agreed that these were important outcomes. Stakeholder consultation workshops identified that project conclusions and recommendations made sense, were meaningful and were valued by parents and professionals. Parents and health professionals were positive about a proposed Focus on Early Eating, Drinking and Swallowing (FEEDS) toolkit of interventions that, through shared decision-making, could be recommended by health professionals and delivered by families. Limitations: The national surveys included large numbers of parents and professionals but, as expected, these were not representative of the UK population of parents of children with eating, drinking and swallowing difficulties. Owing to the limitations of research evidence, pragmatic decisions were made about interventions that might be included in future research and outcomes that might be measured. For instance, the reviews of research found only weak or poor evidence to support the effectiveness of interventions. The review of outcome measures found only limited low-level evidence about their psychometric properties. Conclusions: Opportunities and challenges for conducting clinical trials of the effectiveness of the FEEDS toolkit of interventions are described. Parents and professionals thought that implementation of the toolkit as part of usual NHS practice was appropriate. However, this would first require the toolkit to be operationalised through development as a complex intervention, taking account of constituent interventions, delivery strategies, implementation and manualisation. Subsequently, an evaluation of its clinical effectiveness and cost-effectiveness could be undertaken using appropriate research methods. Future work: Initial steps include FEEDS toolkit development and evaluation of its use in clinical practice, and identification of the most robust methods to measure valued outcomes, such as Nutrition and Growth. Trial registration: Current Controlled Trials ISRCTN10454425. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 22. See the NIHR Journals Library website for further project information.

Although neurodisability features significantly across child welfare and youth justice cohorts, little research investigates neurodisability among crossover children with dual systems involvement. This study examined differences in childhood adversity, child protection involvement, and offending among crossover children by neurodisability status. Data were from a sample of 300 children (68% male, 31% female, 1% transgender; mean age = 16.2 years, range 10–21) who were charged and appeared in three Australian children's courts, and who also had statutory child protection involvement in the study jurisdiction. The results indicated that nearly one-half of crossover children had a neurodisability (48%) and this group experienced greater cumulative maltreatment and adversity, earlier out-of-home care entry and offending onset, more caregiver relinquishment and residential care placement, and a greater volume of charges. While substantial differences between specific neurodisabilities were evident, crossover children with any neurodisability had greater odds of having charges related to criminal damage and motor vehicle theft, however they were no more likely to have violent charges relative to other crossover children. The study's findings demonstrated that the prevalence of neurodisability, and child welfare system responses to this phenomenon, contributes to several offending-related trends observed among crossover children. [ABSTRACT FROM AUTHOR]

Adhesions and fibrosis following failed primary surgery for severe gastro-oesophageal reflux (GOR) in neurologically impaired children (NI) can render mobilization of the lower oesophagus and oesophago-jejunal anastomosis a technically demanding exercise both at open surgery and laparoscopy. This paper presents the Modified Oesophago-Gastric Dissociation (M-OGD) as a less complex technical modification of the original Total Oesophago-Gastric Dissociation (TOGD). The stomach is detached from the oesophago-gastric junction with an articulated 5-mm stapler, leaving a 5-mm strip of stomach attached to the oesophagus. An end-to-side isoperistaltic oesophago-jejunostomy is created between the gastric stump and the isoperistaltic jejunal Roux loop. A jejuno-jejunal anastomosis restores bowel continuity. Between May 2018 and February 2020, M-OGD was performed on 3 NI patients with a weight of 9–27.3 kg (median = 14 kg). Median age at surgery was 60 months (18–180), median surgical time 170 min (146–280), median re-feeding time was 3 days (2–5), and median length of stay was 20 days (11–25). All patients healed primarily and after a median follow-up of 3 months, there were no problems related to the oesophago-jejunal anastomosis. M-OGD reduces the difficulties of redo oesophageal surgery following failed anti-reflux procedures, with a safer oesophago-jejunal anastomosis and a good long-term outcome. [ABSTRACT FROM AUTHOR]

Background: Outcomes of prenatal covariate-adjusted outborn very-low-birth-weight infants (VLBWIs) (≤1500 g) remain uncertain.Objective: To compare morbidity and mortality between outborn and inborn VLBWIs.Design: Observational cohort study using inverse-probability-of-treatment weighting.Setting: Neonatal Research Network of Japan.Patients: Singleton VLBWIs with no major anomalies admitted to a neonatal intensive care unit from 2012 to 2016.Methods: Inverse-probability-of-treatment weighting with propensity scores was used to reduce imbalances in prenatal covariates (gestational age (GA), birth weight, small for GA, sex, maternal age, premature rupture of membranes, chorioamnionitis, preeclampsia, maternal diabetes mellitus, antenatal steroids and caesarean section). The primary outcome was severe intraventricular haemorrhage (IVH). The secondary outcomes were outcomes at resuscitation, other neonatal morbidities and mortality.Results: The full cohort comprised 15 842 VLBWIs (668 outborns). The median (IQR) GA and birth weight were 28.9 (26.4-31.0) weeks and 1128 (862-1351) g for outborns and 28.7 (26.3-30.9) weeks and 1042 (758-1295) g for inborns. Outborn VLBWIs had a higher incidence of severe IVH (8.2% vs 4.1%; OR, 3.45; 95% CI 1.16 to 10.3) and pulmonary haemorrhage (3.7% vs 2.8%; OR, 5.21; 95% CI 1.41 to 19.2). There were no significant differences in Apgar scores, oxygen rates at delivery, intubation ratio at delivery, persistent pulmonary hypertension of the newborn, IVH of any grade, periventricular leukomalacia, chronic lung disease, oxygen at discharge, patent ductus arteriosus, retinopathy of prematurity, necrotising enterocolitis, sepsis or mortality.Conclusion: Outborn delivery of VLBWIs was associated with an increased risk of severe IVH. [ABSTRACT FROM AUTHOR]

Multiple births (twins or higher order multiples) are increasing in developed countries and may present higher risk for cerebral palsy (CP). However, few studies can reliably investigate trends over time because these outcomes are relatively rare.Objective: We pooled data from European CP registers to investigate CP birth prevalence and its trends among single and multiple births born between 1990 and 2008.Design: Population cohort study.Setting: 12 population-based registers from the Surveillance of Cerebral Palsy in Europe collaboration.Participants: 4 446 125 single and multiple live births, of whom 8416 (0.19%) had CP of prenatal or perinatal origin.Main Outcomes: CP diagnosis ascertained in childhood using harmonised methods; CP subtype; Motor impairment severity among CP cases.Results: The rate of multiple births increased from 1990. Multiples displayed higher risk for CP (RR=4.27, 95% CI 4.00 to 4.57). For singletons and multiples alike, risk for CP was higher among births of lower gestational age (GA) or birth weight (BW). However, CP birth prevalence declined significantly among very preterm (<32 weeks) and very low BW (<1500 g) multiples. Singletons and multiples with CP displayed similar severity of motor impairment.Conclusions: Between 1990 and 2008, CP birth prevalence decreased steadily among multiples with low GA or BW. Furthermore, multiples with CP display similar profiles of severe motor impairment compared with CP singletons. Improvements in management of preterm birth since the 1990s may also have been responsible for providing better prospects for multiples. [ABSTRACT FROM AUTHOR]