COVID-19 and UK family carers: policy implications.

Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. We provide policy recommendations with the aim of improving outcomes for all carers.

Psychological impact of the SARS-CoV-2 pandemic in children with neurodevelopmental disorders and their families: evaluation before and during covid-19 outbreak among an Italian sample.

BACKGROUND: The SARS-CoV-2 pandemic forced parents and children to modify their habits with a radical change in the family routine and consequent increase in psychological stress. Children with a neurodevelopmental disorder (NDDs) are particularly vulnerable to new and unexpected situations; moreover, the parents of these children generally show high levels of psychological stress due to the greater commitment that this condition imposes on them. The aim of this study is to evaluate the disease status of NDDs children before and during SARS-CoV-2 pandemic and to evaluate the psychological effects related to measures of social distancing on these children and their families. MATERIALS AND METHODS: Seventy-one children with NDDs, were enrolled in this study and followed up at the Child Neuropsychiatry Unit of the University Hospital Consortium Corporation Polyclinic of Bari (Italy) along with their parents. Parents were evaluated before national lockdown (baseline) and recontacted during the SARS-CoV-2 emergency almost after a year. The changes in emotional/behavioral problems of children and parenting stress before and during the SARS-CoV-2 pandemic were assessed with Child Behaviour CheckList (CBCL) and Parent Stress Index - short form (PSI). RESULTS: The analysis of the emotional and behavioral problems of children with NDDs did not show statistically significant differences between the before and during the SARS-CoV-2 pandemic period. The evaluations conducted on parents highlights an increase in parental stress during the pandemic. Significant differences (p<0.05) were found in three subscales: Parenting Distress (PD) scale, Dysfunctional Interaction Parent-Child (P-CDI) scale and Defensive responding scale (DF). CONCLUSIONS: This study highlights the increase in parental stress and a more difficult parent-child interaction with NDDs in the period of lockdown due to the pandemic; identification of these risk targets can be useful for interventions in similar situations. Therefore, it is necessary to provide caregivers information to manage and overcome challenges experienced during a pandemic and providing psychological support for caregivers of children with NDDs.

Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities.

BACKGROUND: The present study investigated the impact of the COVID-19-related rehabilitation services lockdown on the mental health of caregivers of children with neurodevelopmental disabilities. METHODS: Between 26 March and 11 May 2020, 84 caregivers filled out ad-hoc and standardized questionnaires through an online survey in order to measure their psychological response to the emergency and lockdown as well as their levels of parenting stress, anxiety and depression. RESULTS: Worries about COVID-19 contagion and concerns for the child left without rehabilitation programs were the greatest sources of mental health burden for caregivers. Nonetheless, only the concerns for the child were significantly associated with caregivers' reports of stress, depressive and anxious symptoms. DISCUSSION: These findings highlight the burden faced by caregivers of children with neurodevelopmental disabilities during the COVID-19 emergency in Italy. These families should be considered as a high-risk population that requires dedicated healthcare attention, such as promoting continuity of care by investing in tele-rehabilitation programs. Implications for rehabilitation Caregivers of children with disability reported symptoms of anxiety and depression during COVID-19 emergency. Major concerns regarded COVID-19 contagion risk and child development during rehabilitation lockdown. Caregivers' psychological symptoms were associated with concerns for child development during the lockdown. Parents of children with disability may face relevant stress during and after COVID-19 psychological burden. During COVID-19 recovery, policy-makers and clinicians should dedicate specific care actions for families of children with disability.

Reframing QoL assessment in persons with neurodevelopmental disorders.

The paper reviews the international literature on quality of life (QoL) for persons with neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal assessment. The application of the QoL approach to assessment procedures should be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect refers to characteristics of individual life that are shared with other people. The second aspect proceeds from the fact that each individual has a changing set of personal attributes that determine the subjective experience of life. In the third aspect the previous two are applied to the family that includes a person with NDD. Disability impacts the whole family and the determination of appropriate conceptualization of family outcomes requires an understanding of the impact of members with a disability on family QoL. At any level, it seems best to take a comprehensive approach to assessing QoL, integrating subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach is above all a way to explore the rich intricacies of personal quality of life. Such assessment may be used effectively with people with NDD, independently from the severity of their functioning impairment. Individuals with profound ID may express their inner states through consistent behavioural repertoires, which can be discerned by persons closest to them and validated by more independent others. Attention must be paid in using non-generic instruments, such as those that measure health-related QoL. Although they do focus on the individual person, they still support a theoretical perspective of QoL that has not departed significantly from the traditional medical approach. Currently available generic tools, although they have some common conceptual and evaluation characteristics, still show considerable differences in the areas to be included in "shared QoL", the dimensions used to evaluate "Individual QoL", and the role attributed to indicators of QoL. QoL assessment should not represent a classification of individuals, services or systems, but it should help provide, within service systems and organizations, a value system that is consistent with those values held by people with NDD.

Health determinants of adolescent criminalisation.

Several conditions related to health and development in adolescence can increase the risk that a young person will be exposed to the criminal justice system. Such determinants include neurodevelopmental disability, poor mental health, trauma, and experiences of maltreatment. Furthermore, the risk of exposure to the criminal justice system seems to be amplified by social marginalisation and inequality, such that young people are made susceptible to criminal behaviour and criminalisation by a combination of health difficulties and social disadvantages. This Review presents evidence on the health determinants of criminalisation among adolescents, providing a persuasive case for policy and practice reform, including for investment in approaches to prevent criminalisation on the basis of health and developmental difficulties, and to better address related needs once within a criminal justice system.

An eHealth insomnia intervention for children with neurodevelopmental disorders: Results of a usability study.

BACKGROUND: Sleep problems, particularly insomnia, are highly prevalent in children with neurodevelopmental disorders (NDD) and can negatively affect health and development. eHealth interventions may increase access to evidence-based care for insomnia for children with NDD, as programs are rare in most communities. Better Nights, Better Days (BNBD) is an online, parent-implemented intervention for pediatric insomnia in typically developing 1- to 10-year-olds. AIMS: The present study examined whether parents of children with NDD perceived the original BNBD to be usable, acceptable, and feasible, and what modifications might be necessary to adapt it for children with NDD. METHODS AND PROCEDURES: Twenty Canadian parents/caregivers of children aged 4-10 years with NDD and insomnia implemented the BNBD intervention with their children, and completed usability questionnaires. Questionnaire data were analyzed quantitatively (descriptive statistics) and qualitatively (thematic analysis). OUTCOMES AND RESULTS: Participants reported the intervention to be usable, useful, acceptable, and feasible. Several modifications were suggested to make the intervention more appropriate and acceptable for use with children with NDD. CONCLUSIONS AND IMPLICATIONS: Results support a largely transdiagnostic approach to treating sleep in children with NDD, and will inform the development of BNBD for Children with Neurodevelopmental Disorders (BNBD-NDD).

Greater Engagement in Gender-Sexuality Alliances (GSAs) and GSA Characteristics Predict Youth Empowerment and Reduced Mental Health Concerns.

Extracurricular groups can promote healthy development, yet the literature has given limited attention to indirect associations between extracurricular involvement and mental health or to sexual and gender minority youth. Among 580 youth (Mage  = 15.59, range = 10-20 years) and adult advisors in 38 Gender-Sexuality Alliances (GSAs), multilevel structural equation models showed that greater engagement in GSAs over the school year predicted increased perceived peer validation, self-efficacy to promote social justice, and hope (baseline adjusted). Through increased hope, greater engagement indirectly predicted reduced depressive and anxiety symptoms at the year's end (baseline adjusted). GSAs whose members had more mental health discussions and more meetings reported reduced mental health concerns. Findings suggest how groups addressing issues of equity and justice improve members' health.

Association between cumulating substances use and cumulating several school, violence and mental health difficulties in early adolescents.

Multiple substances (alcohol, tobacco, cannabis and other illicit drugs (OID)) have been frequently used in early adolescents maybe due to school, violence and mental-health difficulties. We investigated the associations between substance-use patterns and related difficulties among 1559 middle-school adolescents from north-eastern France (mean age 13.5 ±â€¯1.3). They completed a questionnaire including socioeconomic features, school, violence and mental-health difficulties (school grade repetition, sustained physical/verbal violence, sexual abuse, perpetrated violence, poor social support, depressive symptoms and suicide attempt; cumulated number noted SVMDscore) and the time of their first occurrence during the life course. Data were analyzed using logistic and negative binomial regression models. Alcohol, tobacco, cannabis and OID use affected 35.2, 11.2, 5.6 and 2.8% of the subjects respectively. The risk of using tobacco only, alcohol and tobacco, alcohol plus tobacco and cannabis, or all alcohol, tobacco, cannabis and OID strongly increased with the SVMDscore (socioeconomic features-adjusted odds ratio reaching 85). The risk began in early years in middle schools and then steadily increased, more markedly for elevated SVMDscore. Exposure to several SVMDs may be a transmission vector towards the substance use, starting mostly with alcohol/tobacco, and then shifting to cannabis/OID. These findings help to understand substance-use risk patterns and identify at-risk adolescents.

Views of professionals about the educational needs of children with neurodevelopmental disorders.

BACKGROUND: Professionals play a key role in supporting children with special educational needs in schools. However, the views of those working with neurodevelopmental disorders are less known. AIMS: This study examined the views of professionals (including teachers, teaching assistants, educational psychologists, speech and language therapists, physio and occupational therapists etc.) working with children with Williams Syndrome (WS), Down Syndrome (DS) or with Autism Spectrum Disorders (ASD) in terms of how informed professionals are about the disorder and their views about the type of support these children need to be receiving. METHODS AND PROCEDURES: Professionals working with 77 children with ASD, 26 with DS and 38 with WS completed an online questionnaire. OUTCOMES AND RESULTS: Professionals in all three groups highlighted relevant areas of difficulty for these children, but they did not recognise some of the less phenotypical difficulties that children with a specific disorder may experience. In addition, there was a disconnect between the difficulties identified by the professionals and the type of specialist support that may be necessary. CONCLUSIONS AND IMPLICATIONS: Although professionals have a lot of knowledge about the specific neurodevelopmental disorders, further evidence-based training would allow more effective support for children with neurodevelopmental disorders in the classroom but also equip professionals better and raise their confidence in meeting these children's needs.

Chronicity of mental comorbidity in children with new-onset physical illness.

BACKGROUND: Evidence suggests that physical and mental illnesses are strongly correlated in children. This study examined patterns of the chronicity of multimorbidity (co-occurring physical and mental illness); estimated homotypic continuity; and modelled factors associated with chronicity in children newly diagnosed with a chronic physical illness. METHODS: Children aged 6-16 years diagnosed with one of asthma, diabetes, epilepsy, food allergy, or juvenile arthritis were recruited from two children's hospitals and followed for 6 months. Child mental illness was measured using the parent-reported Mini International Neuropsychiatric Interview and Ontario Child Health Study Emotional Behavioural Scales at baseline and 6 months later. Children were stratified into three groups: no multimorbidity, acute (multimorbidity at only one assessment), and persistent (multimorbidity at both assessments). RESULTS: Forty-nine children were available for analysis: no multimorbidity (n = 18), acute (n = 13), and persistent (n = 18). Homotypic continuity was highest for conduct disorder (67.5%) and lowest for major depression (16.7%). Unadjusted analyses showed positive associations between child and parent behavioural symptoms, as well as family functioning with persistent multimorbidity. These associations remained after adjustment, ranging from odds ratio (OR) = 1.29 [1.01, 1.64] for depression to OR = 1.61 [1.11, 2.33] and OR = 1.61 [1.10, 2.35] for attention-deficit hyperactivity and oppositional defiant, respectively, in child models. In parent models, associations remained for parental anxiety (OR = 1.18 [1.04, 1.34]) and stress (OR = 1.15 [1.02, 1.31]). CONCLUSIONS: Multimorbidity is persistent in children newly diagnosed with physical illnesses, regardless of the mental comorbidity experienced. Integrating family-centred mental health services soon after the diagnosis of a physical illness should be prioritized in pediatric settings.

Patterns of support to adolescents related to disability, family situation, harassment, and economy.

INTRODUCTION: Adolescents need support from family, friends, and teachers to increase their involvement in everyday life. Their environment and their own characteristics also influence their ability to participate in an everyday supportive environment. AIM: The aim of the study was to investigate patterns of support from parents, teachers, and very important persons such as peers to the ability of adolescents to participate in everyday life, as well as the importance of interpersonal relations as experienced by the adolescents. METHOD: The study has a cross-sectional design. The data compiled and analysed in this study are part of a longitudinal study of adolescents and their development into adults-LoRDIA (Longitudinal Research on Development In Adolescence). A combination of person- and variable-oriented design was used to capture patterns of support. RESULTS: Adolescents with a complicated home situation and low economic prerequisites who received little support from parents and friends participated to a lower degree in home activities. A substantial number of these adolescents had self-reported neurodevelopmental disorders and, as a group, were more often exposed to harassment. However, these adolescents participated to a higher extent in school activities, although they received little support from the teachers. The adolescents who received most support from parents and teachers were those with a country of origin other than Sweden and those who lived with both of their parents and had more siblings than average. However, this did not mean that they participated to a higher extent in home and school activities.

Socioeconomic inequalities in psychosocial problems of children: mediating role of maternal depressive symptoms.

Background: Socioeconomically disadvantaged children often have psychosocial problems. This study examined the mediating role of maternal depressive symptoms during pregnancy, infancy and early childhood in the association between maternal education, as indicator of socioeconomic status (SES), and child's psychosocial problems. Methods: Included were 3410 children from the Amsterdam Born Children and their Development (ABCD) study. To assess the child's psychosocial problems at age 5-6 years, mothers and teachers completed the Strengths and Difficulties Questionnaire (SDQ). Maternal depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale and the Depressive Anxiety and Stress Scale 21. Mediation analysis was performed to calculate the direct effect of maternal education on SDQ score and indirect effects through maternal depressive symptoms. Results: The mean mother-reported SDQ total score was significantly higher (P < 0.001) for children of low-educated mothers (6.74 ± 4.41) compared with children of highly educated mothers (4.47 ± 3.73). Levels of maternal depressive symptoms were also higher in low-educated mothers during pregnancy, infancy and early childhood. Maternal depressive symptoms explained 27.5% of the association between maternal education and mother-reported SDQ scores and 22.9% for combined mother/teacher SDQ scores. Maternal depressive symptoms during pregnancy had the strongest indirect effect. Conclusion: Maternal depressive symptoms during pregnancy mediate the association between low maternal education and child's psychosocial problems. Early recognition and treatment of maternal depressive symptoms is important to prevent psychosocial problems in children, especially in those with low education.

Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability.

BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis. RESULTS: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated. CONCLUSIONS: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.

Language Assessment for Children With a Range of Neurodevelopmental Disorders Across Four Languages in South Africa.

Purpose: The purpose of this study is (a) to examine the applicability of a culturally and linguistically adapted measure to assess the receptive and expressive language skills of children with neurodevelopmental disorders (NDDs) in South Africa and then (b) to explore the contributions of 2 additional language measures. Method: In Part 1, 100 children with NDD who spoke Afrikaans, isiZulu, Setswana, or South African English were assessed on the culturally and linguistically adapted Mullen Scales of Early Learning (MSEL). Clinicians independently rated the children's language skills on a 3-point scale. In Part 2, the final 20 children to be recruited participated in a caregiver-led interaction, after which the caregiver completed a rating scale about their perceptions of their children's language. Results: Performance on the MSEL was consistent with clinician-rated child language skills. The 2 additional measures confirmed and enriched the description of the child's performance on the MSEL. Conclusions: The translated MSEL and the supplemental measures successfully characterize the language profiles and related skills in children with NDD in multilingual South Africa. Together, these assessment tools can serve a valuable function in guiding the choice of intervention and also may serve as a way to monitor progress.

A model of well-being for children with neurodevelopmental disorders: Parental perceptions of functioning, services, and support.

BACKGROUND: Both child function and supports and services have been found to impact the well-being of parents of children with neurodevelopmental disorders (NDD). The relationship between function and services and the well-being of children with NDD is less well-understood and is important to clarify in order to effect program and service change. METHODS: The current project assessed whether child function as well as the adequacy of formal supports and services provided to children and their families were predictive of child well-being. Well-being was assessed using a measure of quality of life developed for use with children with NDD. Data from 234 parents were analysed using structural equation modelling. RESULTS: Each predictor was found to load significantly on the overall outcome variable of well-being. Parent concerns about child function were significantly related to child well-being; parents who reported more concerns about their children's functioning reported lower levels of child well-being. Unmet needs for formal supports and services were also significantly related to child well-being; parents who reported that more of their children's and family's service needs were unmet reported lower child well-being. An indirect relationship was also found between child function and child well-being. When parents reported that their formal support needs were adequately met, their children's functional difficulties had a lower impact on parent perceptions of their children's overall well-being. CONCLUSIONS: Taken together, the results of the current study enrich our understanding of well-being for children with NDD. Discussion focuses on the service implications for children with NDD and their families.

Child labor and severe functioning difficulties and disability in Mexican children and adolescents 5-17 years of age.

OBJECTIVE: To describe the characteristics of Mexican children and adolescents 5-17 years with severe functioning difficulties and disability and explore their participation in child labor. MATERIALS AND METHODS: Using data from the National Survey of Boys, Girls and Women in Mexico 2015 we estimated prevalence of functioning difficulties and disability and used logistic regression to explore the association between this condition and child labor. RESULTS: While 11.2% of Mexicans 5-17 years-old has severe functioning difficulties or disability, 13.4% work. The functioning difficulty and disability domains with the highest prevalence are experiencing anxiety (5.4%) and depression (1.5%) daily. Children and adolescents with severe functioning difficulties and disability are 70% more likely to do child labor [OR=1.7, 95%CI:1.2,2.4]. Educational lag doubles the likelihood of doing child labor [OR=2.2, 95%CI:1.5,3.3]. CONCLUSIONS: Guaranteeing educational opportunities and respect for the rights of children with severe functioning difficulties and disability is essential to achieve development of their full potential.

Child labor and severe functioning difficulties and disability in Mexican children and adolescents 5-17 years of age / Trabajo infantil y dificultades severas de funcionamiento y discapacidad en niños y adolescentes mexicanos de 5-17 años

Abstract: Objective: To describe the characteristics of Mexican children and adolescents 5-17 years with severe functioning difficulties and disability and explore their participation in child labor. Materials and methods: Using data from the National Survey of Boys, Girls and Women in Mexico 2015 we estimated prevalence of functioning difficulties and disability and used logistic regression to explore the association between this condition and child labor. Results: While 11.2% of Mexicans 5-17 years-old has severe functioning difficulties or disability, 13.4% work. The functioning difficulty and disability domains with the highest prevalence are experiencing anxiety (5.4%) and depression (1.5%) daily. Children and adolescents with severe functioning difficulties and disability are 70% more likely to do child labor [OR=1.7, 95%CI:1.2,2.4]. Educational lag doubles the likelihood of doing child labor [OR=2.2, 95%CI:1.5,3.3]. Conclusions: Guaranteeing educational opportunities and respect for the rights of children with severe functioning difficulties and disability is essential to achieve development of their full potential.

Resumen: Objetivo: Describir la población mexicana de 5-17 años con problemas severos de funcionamiento y discapacidad y explorar su realización de trabajo infantil. Material y métodos: Basado en la Encuesta Nacional de Niños, Niñas y Mujeres 2015, se estimaron prevalencias de problemas de funcionamiento y discapacidad y se exploró la relación con el trabajo infantil en un modelo de regresión logística. Resultados: El 11.2% de los mexicanos de 5-17 años tiene dificultades severas de funcionamiento o discapacidad y 13.4% realiza trabajo infantil. Los ámbitos con la mayor prevalencia fueron ansiedad (5.4%) y depresión (1.5%) experimentadas diariamente. Niños y adolescentes con problemas severos de funcionamiento o discapacidad tienen 70% más posibilidades de realizar trabajo infantil [RM=1.7, IC95%:1.2,2.4]. El rezago educativo duplica las posibilidades de realizar trabajo infantil [RM=2.2, IC95%:1.5,3.3]. Conclusiones: Es imprescindible garantizar oportunidades educativas y respeto a los derechos de la población infantil con problemas de funcionamiento y discapacidad para lograr su desarrollo integral.

Differences in early cognitive and receptive-expressive neurodevelopment by ancestry and underlying pathways in Brazil and Argentina.

We examine disparities in early child cognitive and receptive-expressive skills by ethnic ancestry among infants aged 3-24 months from Brazil and Argentina. We employ unique data on the neurodevelopment of children who were seeking routine well-child care at a set of pediatric clinics in these countries. The sample included children who had normal birth outcomes and no major health complications, allowing us to focus on variation in neurodevelopment among children without major physical health limitations. The physicians attending the pediatric clinics were trained in administering the Bayley Infant Neurodevelopmental Screener, a standardized instrument used to screen an infant's risk of neurodevelopmental problems on various domains of abilities. We evaluate disparities in overall neurodevelopmental scores and risk for neurodevelopmental problems as well as in cognitive functioning and receptive-expressive neurodevelopment. We also examine the extent to which household demographic and socioeconomic characteristics and geographic location explain these disparities. We find large gaps in both cognitive and receptive-expressive neurodevelopment by ancestry. In Brazil, children of African ancestry have lower scores on both cognitive and receptive-expressive domains and on overall neurodevelopment than children of European ancestry. In Argentina, children of Native ancestry have lower scores on these outcomes than children of European ancestry. These gaps however are largely explained by differences in geographic location and household characteristics, highlighting the importance of policies that reduce socioeconomic and geographic disparities in social capital and economic development for eliminating ethnic disparities in infant neurodevelopment.

The State of the Science on Sensory Factors and Their Impact on Daily Life for Children: A Scoping Review.

The objective of this study was to identify and synthesize research about how sensory factors affect daily life of children. We designed a conceptual model to guide a scoping review of research published from 2005 to October 2014 (10 years). We searched MEDLINE, CINAHL, and PsycINFO and included studies about sensory perception/processing; children, adolescents/young adults; and participation. We excluded studies about animals, adults, and review articles. Our process resulted in 261 articles meeting criteria. Research shows that children with conditions process sensory input differently than peers. Neuroscience evidence supports the relationship between sensory-related behaviors and brain activity. Studies suggest that sensory processing is linked to social participation, cognition, temperament, and participation. Intervention research illustrates the importance of contextually relevant practices. Future work can examine the developmental course of sensory processing aspects of behavior across the general population and focus on interventions that support children's sensory processing as they participate in their daily lives.

Meeting the Reproductive Needs of Female Adolescents With Neurodevelopmental Disabilities.

The complexity of caring for female adolescents with neurodisabilities often overshadows normal biological changes. These young women may require additional or individualized support as they adapt to normal puberty and sexual maturation. Many choices are available to assist in managing menstrual problems, hygiene issues, and contraception. Special considerations regarding contraceptive methods, sexual education, and improving service accessibility are explored for clinicians.