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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.

A cross-jurisdictional pan-Canadian environmental scan was conducted to identify provincial, territorial, and federal financial supports available to families with children living with neurodisabilities. In partnership with the organization Childhood Disability LINK, flowchart-styled pathway documents were developed for each financial support identified, mapping out the processes required to access each support. A critical analysis was completed as it relates to structural barriers, accessibility of program information, and geographic discrepancies. The results revealed that, despite almost universal availability of programs to support families of children living with neurodisabilities, significant barriers and inequity remain. This included considerable variation in access to financial support based on geographic and jurisdictional discrepancies, absence of adequate and accurate information about programs, and minimal support provided to families in the application process. We argue that the barriers and discrepancies identified were an inherent result of the Canadian federalist fragmentation of the delivery of social care and financial support programs for children living with neurodisabilities. A more unified response by Canadian provincial, territorial, and federal governments is clearly needed to take positive steps to address the consequences of federalist fragmentation and respond to the structural barriers and geographic discrepancies identified by this study.

This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion.

Background: Given the significant behavioral heterogeneity characterizing children with neurodevelopmental disorders and disabilities (NDD/D), the current study examined whether cluster analysis could classify a diverse sample into more homogeneous subgroups. Aims: We first utilized cluster analysis to identify subgroups of children demonstrating similar behavior profiles. Second, we investigated the distribution of children’s primary diagnoses represented within each cluster. Finally, we compared the clinical utility of clusters versus diagnoses for indices of child and family health. Methods: Caregivers provided data for 222 children with NDD/D (M = 8.22 years), completing measures of child behavior and child and family health. Results: A 4-cluster solution was revealed: Social Difficulties, Cross-domain Difficulties, Hyperactive-inattentive, and Low difficulties, and a range of conditions was found within each. For all indices of child and family health, clusters explained greater variance than did diagnoses. Conclusions: The current study provides new insight into the heterogeneous nature of behavior among children with NDD/D. Considering a child’s unique constellation of strengths and difficulties may serve as a clinically meaningful supplement to diagnosis that more fully elucidates functional profile.

BACKGROUND This exploratory proof of principle study examined the extent to which behavior problems represent a functional characteristic that crosses diagnostic boundaries. METHODS This cross-sectional study pertains to 179 caregivers of children, aged 4-13 years (M = 8.27) with cerebral palsy (n = 77), autism spectrum disorder (n = 58), and global developmental delay/intellectual disability (n = 44). Caregivers completed the Strengths and Difficulties Questionnaire, which provides a measure of conduct problems, emotional symptoms, hyperactivity-inattention, peer problems, as well as total difficulties. RESULTS Behavior problem severity differed across diagnostic groups (p < .001). Visual examination of box plots indicated substantial overlap within Strengths and Difficulties Questionnaire subscales across children with autism spectrum disorder, cerebral palsy, and global developmental delay/intellectual disability. Children within each condition demonstrated matching profile topographies, such that hyperactivity-inattention difficulties were most severe. Repeated measures analysis of variances confirmed that children within each group received significantly higher ratings on the hyperactivity-inattention subscale (all p < .001). CONCLUSIONS The approach adopted to examine the data and findings have the potential to inform how we conceptualize and study behavior problems among children with neurodevelopmental conditions. Importantly, children with particular conditions did not demonstrate unique constellations of difficulties. Clinicians must therefore be attuned to the possibility of commonality in behavior problems across children with disparate diagnoses, irrespective of syndrome-specific expectations.

Background Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well‐being of family members, but evidence on the economic trajectories of families throughout the life course is missing. Methods Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time. Results Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship. Conclusions The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course.

We study effects of higher-order antinematic interactions on the critical behavior of the antiferromagnetic (AFM) $XY$ model on a triangular lattice, using Monte Carlo simulations. The parameter $q$ of the generalized antinematic (ANq) interaction is found to have a pronounced effect on the phase diagram topology by inducing new quasi-long-range ordered phases due to competition with the conventional AFM interaction as well as geometrical frustration. For values of $q$ divisible by 3 the conflict between the two interactions results in a frustrated canted AFM phase appearing at low temperatures wedged between the AFM and ANq phases. For $q$ nondivisible by 3 with the increase of $q$ one can observe the evolution of the phase diagram topology featuring two ($q=2$), three ($q=4,5$) and four ($q \geq 7$) ordered phases. In addition to the two phases previously found for $q=2$, the first new phase with solely AFM ordering arises for $q=4$ in the limit of strong AFM coupling and higher temperatures by separating from the phase with the coexisting AFM and ANq orderings. For $q=7$ another phase with AFM ordering but multimodal spin distribution in each sublattice appears at intermediate temperatures. All these algebraic phases also display standard and generalized chiral long-range orderings, which decouple at higher temperatures in the regime of dominant ANq (AFM) interaction for $q \geq 4$ ($q \geq 7$) preserving only the generalized (standard) chiral ordering., Comment: 23 pages, 10 figures

Introduction Caregivers of children with health problems experience poorer health than the caregivers of healthy children. To date, population-based studies on this issue have primarily used survey data. Objectives We demonstrate that administrative health data may be used to study these issues, and explore how non-categorical indicators of child health in administrative data can enable population-level study of caregiver health. Methods Dyads from Population Data British Columbia (BC) databases, encompassing nearly all mothers in BC with children aged 6-10 years in 2006, were grouped using a non-categorical definition based on diagnoses and service use. Regression models examined whether four maternal health outcomes varied according to indicators of child health. Results 162,847 mother-child dyads were grouped according to the following indicators: Child High Service Use (18%) vs. Not (82%), Diagnosis of Major and/or Chronic Condition (12%) vs. Not (88%), and Both High Service Use and Diagnosis (5%) vs. Neither (75%). For all maternal health and service use outcomes (number of physician visits, chronic condition, mood or anxiety disorder, hospitalization), differences were demonstrated by child health indicators. Conclusions Mothers of children with health problems had poorer health themselves, as indicated by administrative data groupings. This work not only demonstrates the research potential of using routinely collected health administrative data to study caregiver and child health, but also the importance of addressing maternal health when treating children with health problems.

Purpose To examine household income trajectories of children with and without neurodisability over a period of 6 years. Method 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. Results 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. Conclusions The association between child with neurodisability and lower household income may not hold for all types of parents', working status is an important consideration. Implications for Rehabilitation 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.

Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. This was the goal of the Strongest Families Institute Neurodevelopmental research, in Halifax, Nova Scotia, when they included a parent advisory committee, made up of parents and caregivers of children and adolescents with a neurodevelopmental condition, to complete their research project. The purpose of this qualitative research was to examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee for the Strongest Families Neurodevelopment research project. From interviews with both parents/caregivers and researchers that played a role on the advisory committee, four major themes emerged on how to negotiate and navigate their time on the committee and what worked well and what did not. This led to recommendations for future researchers and patients who may create or be a part of an advisory committee.

Critical properties of a geometrically frustrated generalized $XY$ model with antiferromagnetic (AFM) and third-order antinematic (AN3) couplings on a triangular lattice are studied by Monte Carlo simulation. It is found that such a generalization leads to a phase diagram consisting of three different quasi-long-range ordered (QLRO) phases. Compared to the model with the second-order antinematic (AN2) coupling, besides the AFM and AN3 phases which appear in the limits of relatively strong AFM and AN3 interactions, respectively, it includes an additional complex canted antiferromagnetic (CAFM) phase. It emerges at lower temperatures, wedged between the AFM and AN3 phases, as a result of the competition between the AFM and AN3 couplings, which is absent in the model with the AN2 coupling. The AFM-CAFM and AN3-CAFM phase transitions are concluded to belong to the weak Ising and weak three-state Potts universality classes, respectively. Additionally, all three QLRO phases also feature true LRO of the standard and generalized chiralities, which both vanish simultaneously at second-order phase transitions with non-Ising critical exponents and the critical temperatures slightly higher than the magnetic and nematic order-disorder transition temperatures., Comment: 20 pages, 8 figures

Social Determinants of Health is a conceptual framework typically used to understand patterns of health and ill-health at the population level. Its applicability to children and youth who already have a health condition, in this case, a neurodisability, is not well understood, particularly when the “health” component of that framework is extended to include more pluralistic notions of well-being. The purpose of this study was to address this challenge and to develop an ecosocial framework that is conceptually integrative and meaningful to children and youth with neurodisabilities and their families. Drawing on a critical literature review, a conceptual analysis approach, and a secondary analysis of a compendium of 36 social determinants of health models, we critically analysed how these models map onto the context of childhood neurodisability and identified key conceptual and empirical challenges. The emerging framework was further validated through iterative stakeholder consultation with parents, self-advocates, researchers, practitioners, community leaders, and decision-makers. The review and consultation process generated The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families. This new framework consists of two hemispheres encompassing explanatory (or observational) and action-oriented (or transformational) components relating to social determinants of health and well-being and living a daily life of quality in childhood neurodisability. The proposed framework provides a roadmap for practitioners, policy-makers, and researchers as well as activists, families, and communities, to reflect on both social determinants and social change processes that shape the health, well-being, and everyday lives of children and youth with neurodisabilities and their families.IMPLICATIONS FOR REHABILITATIONSocial Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level.In childhood neurodisability, however, it is important to consider pluralistic notions of “well-being” and living a daily “life of quality” that may relate, but are not limited, to health.The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families.Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights. Social Determinants of Health provides a conceptual framework for understanding the social causes and consequences of health and ill-health at the population level. In childhood neurodisability, however, it is important to consider pluralistic notions of “well-being” and living a daily “life of quality” that may relate, but are not limited, to health. The Canadian Framework for Social Determinants of Health and Well-being among Children with Neurodisabilities and their Families comprises an explanatory hemisphere of social determinants, factors, and contingencies, and an action-oriented hemisphere that identifies different forms and levels of mobilization that can guide rehabilitation practice to achieve social change in the lives of children, youth, and their families. Using an ecosocial perspective, this framework provides a roadmap for future research and policy development that is relevant to children and families as well as to current perspectives in rehabilitation, social and health justice, and childhood, disability, and neurodiversity rights.

Background The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub-domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub-domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability. Method Caregivers of 216 children and adolescents (M = 8.17 years) with neurodevelopmental disorder and disability completed measures of children's practical, conceptual and social skills (i.e. adaptive behaviour), behaviour problems and positive and negative family impact. Results Indices of child adaptive and problematic behaviour were only significantly associated with perceived negative family impact. Children's practical and social skills, as well as emotional symptoms, emerged as significant predictors of perceived negative family impact, with emotional symptoms accounting for greatest variance. Including diagnosis in our statistical models did not explain additional variance above and beyond these particular sub-domains of child functioning. Conclusions The study findings suggest that it is not children's most impaired domains of functioning that are perceived as significantly impactful by the family. The findings highlight the importance of devoting consideration to the ways in which the functional limitations experienced by children with chronic developmental health conditions similarly impact family life and well-being, regardless of disorder designation.

AIM To examine key outcomes in the education of young people with and without neurodisabilities, and to investigate additional disparities in educational achievement in relation to socio-economic background. METHOD Data were collected on 2488 Canadian children (age range 10-11y) in 1994 and 1995 from the National Longitudinal Survey of Children and Youth whom were followed for 14 years. We performed separate, discrete-time survival analysis to investigate the effects of having a neurodisability on high school completion, enrolment in post-secondary education (PSE), and PSE completion. RESULTS The baseline prevalence of neurodisabilities was 12%. Fewer children with neurodisabilities completed high school or enrolled in PSE, compared to children without neurodisabilities, irrespective of parental education. The likelihood that students with neurodisabilities completed PSE differed according to their parents' education: students with neurodisabilities living in less-educated families were about half as likely to complete PSE themselves. INTERPRETATION Children with neurodisabilities receive less education than children without neurodisabilities. Children from families with low educational attainment appear to be particularly vulnerable. WHAT THIS PAPER ADDS Twelve per cent of children in Canada aged 10 years to 11 years have a neurodisability. High school completion rate was 70% for children with neurodisabilities versus 94% for children without neurodisabilities. Children with neurodisabilities from less-educated families are particularly vulnerable to lower educational achievement.

The aim of this study was to identify children with neurodevelopmental disorders and disabilities (NDD/D) and compare their healthcare service utilization to children without NDD/D using provincial linked administrative data.The sample included children aged 6 to 10 years (n=183 041), who were registered with the British Columbia Medical Services Plan. Diagnostic information was used for the identification and classification of NDD/D in six functional domains. Healthcare service utilization included outcomes based on physician claims, prescription medication use, and hospitalization.Overall, 8.3% of children were identified with NDD/D. Children with NDD/D had higher healthcare service utilization rates than those without NDD/D. Effect sizes were: very large for the number of days a prescription medication was dispensed; large for the number of prescriptions; medium for the number of physician visits, different specialists visited, number of different prescription medications, and ever hospitalized; and small for the number of laboratory visits, X-ray visits, and number of days hospitalized.The findings have policy implications for service and resource planning. Given the high use of psychostimulants, specialized services for both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D. Future studies may examine patterns of physician behaviours and costs attributable to healthcare service utilization for children with NDD/D.Children with neurodevelopmental disorders and disabilities (NDD/D) have higher healthcare service utilization than those without. Based on provincial population-based linked administrative health data, a sizeable number of children are living with NDD/D. Given the high use of psychostimulants, specialized services for children with both NDD/D and psychiatric conditions may be the most needed services for children with NDD/D.

IntroductionCaregivers of children with health problems experience poorer health than the caregivers of healthy children. To date, population-based studies on this issue have primarily used survey data. ObjectivesWe demonstrate that administrative health data may be used to study these issues, and explore how non-categorical indicators of child health in administrative data can enable population-level study of caregiver health. MethodsDyads from Population Data British Columbia (BC) databases, encompassing nearly all mothers in BC with children aged 6-10 years in 2006, were grouped using a non-categorical definition based on diagnoses and service use. Regression models examined whether four maternal health outcomes varied according to indicators of child health. Results162,847 mother-child dyads were grouped according to the following indicators: Child High Service Use (18%) vs. Not (82%), Diagnosis of Major and/or Chronic Condition (12%) vs. Not (88%), and Both High Service Use and Diagnosis (5%) vs. Neither (75%). For all maternal health and service use outcomes (number of physician visits, chronic condition, mood or anxiety disorder, hospitalization), differences were demonstrated by child health indicators. ConclusionsMothers of children with health problems had poorer health themselves, as indicated by administrative data groupings. This work not only demonstrates the research potential of using routinely collected health administrative data to study caregiver and child health, but also the importance of addressing maternal health when treating children with health problems. KeywordsPopulation data, linked data, case-mix, children with special health care needs

Introduction Caregivers of children with health problems experience poorer health than the caregivers of healthy children. To date, population-based studies on this issue have primarily used survey data. Objectives We demonstrate that administrative health data may be used to study these issues, and explore how non-categorical indicators of child health in administrative data can enable population-level study of caregiver health. Methods Dyads from Population Data British Columbia (BC) databases, encompassing nearly all mothers in BC with children aged 6-10 years in 2006, were grouped using a non-categorical definition based on diagnoses and service use. Regression models examined whether four maternal health outcomes varied according to indicators of child health. Results 162,847 mother-child dyads were grouped according to the following indicators: Child High Service Use (18%) vs. Not (82%), Diagnosis of Major and/or Chronic Condition (12%) vs. Not (88%), and Both High Service Use and Diagnosis (5%) vs. Neither (75%). For all maternal health and service use outcomes (number of physician visits, chronic condition, mood or anxiety disorder, hospitalization), differences were demonstrated by child health indicators. Conclusions Mothers of children with health problems had poorer health themselves, as indicated by administrative data groupings. This work not only demonstrates the research potential of using routinely collected health administrative data to study caregiver and child health, but also the importance of addressing maternal health when treating children with health problems. Keywords Population data, linked data, case-mix, children with special health care needs

The importance of the family environment for the development of children with neurodisabilities is undisputed. The objective of this study is to describe how family environment has been measured in research on families of children with neurodisabilities, in order to support researchers and clinicians to select appropriate methods for use. A three-step approach was used and 13 measures of family environment were identified within 77 studies. Five measures were used most commonly across a majority of studies (n=50). The measures varied considerably in terms of theoretical background, content, subscales, and populations for which they were developed and validated. These measures were used with considerable variability between studies and with a limited range of research respondents, most typically the child's mother. Challenges, opportunities, and suggestions on how to improve the application of family environment measures in research are discussed.

A scoping review of the literature on parenting programmes that target the promotion of adolescent mental health was conducted to examine the quality of the studies and unique content of programmes for parents from ethnoculturally diverse communities. PsycINFO and Web of Science were searched in April, 2011 (for all publications prior to that date) and again in August, 2015 (for publications from April, 2011 to August, 2015) using specific keywords and inclusion criteria. A hand search was also conducted. Overall, 107 studies met inclusion criteria for final data extraction and included evaluations of interventions targeted at substance use, early/risky sexual activity and behavioural problems. Eighteen of the 107 studies described programmes targeting parents of adolescents from diverse ethnocultural communities; the quality of these 18 studies was assessed using a marginally modified version of the Downs and Black Checklist (Downs & Black 1998). Their average quality assessment score was 16 out of 28. In addition, two key themes reflected in successful interventions emerged: strengthening parent-adolescent relationship through communication, and importance of community engagement in designing and implementing the intervention. Findings indicate gaps in service delivery to parents of adolescents from ethnoculturally diverse communities; there are a limited number of studies on programmes targeting ethnoculturally diverse parents of adolescents, and the quality of studies that do exist is overall low. Given increasing diversity, more emphasis should be placed on developing and modifying programmes to meet the needs of ethnoculturally diverse communities. More rigorous, standardised efforts should be made to evaluate programmes that do exist.

Background Raising a child with a neurodevelopmental disorder or disability (NDD/D) presents unique challenges to the family, and presence of behavior problems has been identified as a critical risk factor for a broad range of family outcomes. Aims The current study examines whether caregivers’ perceptions of child and family service adequacy mediate or moderate the relation between children’s behavioral difficulties and negative family impact. Methods and procedures Caregivers provided data for 215 children with NDD/D (M = 8.16 years), completing measures of child behavior problems (Strengths and Difficulties Questionnaire), perceived child and family service inadequacy (Supports and Services Questionnaire), and family impact (Family Impact of Childhood Disability Scale). Outcomes and results Both child and family service inadequacy partially mediated, but did not moderate the association between child behavior problems and perceived negative family impact. Conclusions and implications The current study highlights that all families of children with NDD/D are in need of support, irrespective of the severity of their child’s behavioral difficulties. Furthermore, the findings reinforce that access to a range of supports serving both the child and family is critical to ameliorating negative perceptions regarding the impact of a child’s disability on family life.

Objectives To study the extent to which parents are able to serve as true proxies for their children with epilepsy using a more granular approach than has been found in any study to date. Methods Proxy resemblance to the child was based on discrepancy in z-centered child minus parent scores of matching quality-of-life (QOL) domains for 477 dyads. Latent class mixed models (LCMMs) were built, with child's age as the independent variable for epilepsy-specific and generic QOL. Data were obtained from the QUALITE Canadian cohort, which recruited children with epilepsy aged 8 to 14 years at baseline and their parents. Results Both epilepsy-specific and generic LCMMs produced latent classes representing proxies that were overly positive, overly negative, or in agreement relative to their children with posterior probabilities of 79% to 84%. The “agreement” classes had N = 411 and N = 349 in the epilepsy-specific and generic LCMMs, respectively. The epilepsy-specific LCMM had a small unique class of N = 5 with a posterior probability of 88% called “growing discrepancy.” Conclusions Most parents of children with epilepsy can serve as valid proxies for their children on QOL scales. Poorer parental adaptation is more related to overly negative proxies, whereas low peer support from the child's perspective is more related to overly positive proxies.

Background: In the past thirty years, theoretical and empirical scholarship on father involvement has emerged and firmly established itself. Efforts to define, measure, and explore outcomes related to father involvement in the context of childhood neurodisability are evident but less well established. The purpose of this study was to systematically map empirical studies on father involvement in the context of childhood neurodisability in order to delineate the current state of research and to highlight profitable directions for future research. Methods: A rigorous scoping review method was used to select and analyze empirical studies published between the years 1988 and 2016 in order to systematically map research findings about fathers’ affective, behavioral, and cognitive involvement. Results: Fifty-four (n = 54) studies (quantitative n = 47 and qualitative n = 7) met inclusion criteria associated with three levels of review. Four main trends emerged: (a) paternal “stress” is a main concept of interest; (b) comparison of mothers and fathers on affective and cognitive involvement; (c) lack of a focus on fathers’ behavioral involvement, and (d) the absence of research designs that allow for examination of fathers’ unique perspectives. Conclusions: Fathers are generally underrepresented in research in the context of childhood neurodisability. While there is a lack of depth in this area of research, granular analyses revealed important and unique differences about fathers’ parenting experiences. Recommendations for research and practice are provided.Implications for rehabilitationFathers are underrepresented in the parenting in childhood neurodisability literature.Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment.Rehabilitation and allied health professionals should include fathers in parenting/family assessments.Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members. Fathers are underrepresented in the parenting in childhood neurodisability literature. Fathers who report feeling competent in parenting and connected to their child also report less parenting distress and more satisfaction in their couple relationship and family environment. Rehabilitation and allied health professionals should include fathers in parenting/family assessments. Manifestation of distress may differ among family members. Rehabilitation and allied health professionals should offer individualized care that is attuned to the needs of all family members.

The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub-domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub-domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability.Caregivers of 216 children and adolescents (M = 8.17 years) with neurodevelopmental disorder and disability completed measures of children's practical, conceptual and social skills (i.e. adaptive behaviour), behaviour problems and positive and negative family impact.Indices of child adaptive and problematic behaviour were only significantly associated with perceived negative family impact. Children's practical and social skills, as well as emotional symptoms, emerged as significant predictors of perceived negative family impact, with emotional symptoms accounting for greatest variance. Including diagnosis in our statistical models did not explain additional variance above and beyond these particular sub-domains of child functioning.The study findings suggest that it is not children's most impaired domains of functioning that are perceived as significantly impactful by the family. The findings highlight the importance of devoting consideration to the ways in which the functional limitations experienced by children with chronic developmental health conditions similarly impact family life and well-being, regardless of disorder designation.

This study examined cognitive function in young adults who had epilepsy surgery in childhood. Thirty-seven individuals with medically intractable epilepsy with onset at 16 years or younger who had resective epilepsy surgery at least two years in the past (mean follow-up duration of 8.5 years) were assessed; of these, 13 had seizures within the year prior to the study, and the remainder had none. A comparison group of 16 individuals with childhood-onset intractable epilepsy who had not had surgery, all of whom had experienced at least one seizure in the past 12 months, was also included. The cognitive tests included measures of vocabulary, visuoconstructive ability, memory, and concept formation. Group differences were found only for the vocabulary and verbal memory tests, with the surgical group with seizures having the lowest performance. A subset of the surgical patients had preoperative data available on comparable tests, allowing for an examination of performance over time. Vocabulary scores were higher at follow-up, a finding which was present irrespective of seizure status. The results suggest that after epilepsy surgery in childhood or adolescence, few improvements in cognitive skills related to surgery or seizure outcome are to be expected.

Background: The impact of childhood epilepsy can only be appreciated by understanding that epilepsy comprises a set of complex neurobehavioral conditions with significant social consequences, and not simply disorders of recurrent seizures. Our objective is to describe the hypotheses and methodology behind a large prospective longitudinal study that is based on a conceptual framework for understanding health outcomes. The study will quantify the specific influences—direct, mediating or moderating—that various epilepsy, comorbid, child, and family variables exert on health over the early life course. Methods: The target population is 8- to 14-year-old children with epilepsy and their caregivers from across Canada. Children, caregivers, and health professionals are completing 17 measures at five visits over a 28-month period. We have selected measures based on content, the source of the items, psychometric properties, and provisions for child self-report. Our cross-sectional and longitudinal design includes a relational model for structural equation modeling of specific biomedical and psychosocial variables with hierarchical direction of influence. To measure change over time, we will use hierarchical linear modeling. Significance: This article reports the framework for interpreting future data. We believe that it will help researchers consider their methodology and encourage them to plan and execute longitudinal studies. Furthermore, the article will help clinical readers identify what to look for when evaluating outcomes research. It is our belief that the next generation of research to understand life-course effect in the lives of children and youth with chronic conditions and their families must occur over real time.

Aim To describe the pattern of use of rehabilitation services in children and adolescents with cerebral palsy (CP), and to identify factors associated with use. Methods In this study, parents of 91 school-age children and 167 adolescents with CP completed a questionnaire regarding educational and rehabilitation resources received within the last 6 months. Rehabilitation services included occupational therapy (OT), physical therapy (PT), speech language pathology (SLP), psychology and special education. Demographic characteristics were documented and developmental and functional status was assessed. Relationships between service utilization and sociodemographic factors, functioning and school setting were determined. Results Over half of children (53.2%) and adolescents (57.5%) were in regular schools; however, 41% of these required special education resources. The remainder (42.5–46.8%) was in special schools. The majority of children (84.6%) were receiving at least one rehabilitation service although this decreased (68.1%) in adolescence. PT and OT were most common and services were provided predominantly in the school setting. Services were primarily weekly direct interventions at school age, with weekly interventions or consultations most common for adolescents. Younger age was associated with service receipt at school age only. Children with greater motor limitations, lower IQ and greater activity limitations were more likely to receive OT, PT, SLP or special education. Children in segregated schools were significantly more likely to receive rehabilitation services, when compared with children in regular schools. Conclusions The majority of children and youth received one or more services. Individuals with greater motor or cognitive challenges were more likely to receive a range of school-based services from rehabilitation specialists. When compared with children of school age, adolescents were less likely to receive services and when provided, services were more likely to be consultative. Services may need to be more optimally organized through childhood to enhance benefits to children with CP across activity limitation profiles. bs_bs_banner

We used a phenomenological method to examine how the caregiving experiences of Taiwanese women who care for a sibling with cerebral palsy (CP) influence their life decisions. In-depth qualitative interviews were conducted with six adult women, each of whom self-identified as being the sister most involved in caring for a sibling with CP. Themes emerging from caregivers' experiences were caring through interpretation, caring through protection, and caring through sacrifice. These ways of caring created unique considerations and tensions that appeared to have a profound effect on the women's major life decisions.

Objectives. We used Canadian population-based data to examine changes in the health of caregivers of children with complex health problems compared with caregivers of healthy children over a 10-year time period. Methods. The National Longitudinal Survey of Children and Youth collected data biennially from 9401 children and their caregivers in 6 waves from 1994–1995 to 2004–2005. We conducted growth-curve analyses of these data to model self-reported general health and depressive symptoms for 4 groups of caregivers: caregivers of healthy children, and caregivers of children with 1, 2, or at least 3 of 4 conceptually distinct indicators of child health problems. We modeled covariates for children (age, gender, only-child status) and caregivers (age, gender, education, income, marital status). Results. After we controlled for covariates, caregiver health outcomes worsened incrementally with increasing complexity of child health problems. Change in self-reported general health and depressive symptoms over the 10-year period was consistent across all groups of caregivers. Conclusions. Poorer health among caregivers of children with health problems can persist for many years and is associated with complexity of child health problems. Attention to parental health should form a component of health care services for children with health problems.

Background Parenting behaviours influence child well-being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. Objective To examine and compare three parenting behaviours (positive interactions, consistency and ineffective parenting) among caregivers of children with neurodevelopmental disorders and/or externalizing behaviour problems, before and after accounting for child and family socio-demographic characteristics. Methods Participants (n= 14 226) were drawn from the National Longitudinal Survey of Children and Youth, a long-term study of Canadian children that follows their development and well-being from birth to early adulthood. Children (and their caregivers) were divided into four groups according to the presence of a neurodevelopmental disorder (NDD; n= 815), the presence of an externalizing behaviour problem (EBP; n= 1322), the presence of both conditions (BOTH; n= 452) or neither of these conditions (NEITHER; n= 11 376). Results Caregivers of children in the NEITHER group reported significantly higher positive interaction scores and lower ineffective parenting behaviours than caregivers of children in any of the other three groups. Caregivers of children in the EBP and BOTH groups reported similar levels of consistency, but significantly lower levels than caregivers of NDD or NEITHER children. These associations largely remained after accounting for child and family socio-demographic characteristics, with two exceptions: caregivers' reports of positive interactions were no longer significantly associated with child's NDD and BOTH conditions. Conclusions Parenting children with multiple health conditions can be associated with less positive, less consistent and more ineffective parenting behaviours. Understanding the factors that are associated with the challenges of caring for these children may require additional research attention.

In this study the authors address the quality of abstracts reviewed during a systematic review. Their objective was to describe the proportion of abstracts that could not be coded and to explore factors associated with that outcome. Using an exploratory design, a database of titles uploaded for analysis was examined for clarity, type and year of publication, and abstract format. Of the 1851 references examined, 481 (26%) were coded as unclear. The inter-rater reliability Kappa score was 0.777. These abstracts were more likely to have been published prior to 2002 and did not use a structured format. Abstracts are an important tool in the systematic review process. Structured abstracts can reduce the time and costs associated with conducting a systematic review.

Summary Purpose: The purpose of this study was to examine the social relationships and participation in educational, vocational, and community life in young adults who had undergone epilepsy surgery during childhood or adolescence. Methods: This was a retrospective, cross-sectional, case-controlled, and multisite design study. Findings were compared between young adults who had undergone epilepsy surgery and were seizure-free in the previous 12 months (n = 38), those who had undergone epilepsy surgery and were not seizure-free (n = 33), and a group of individuals with epilepsy who had not undergone surgery (n = 31). Results: The surgical seizure-free group had significantly better general social well-being than the other two groups. Specifically, these participants were employed for more months over the past year, were less likely to report that epilepsy had affected their employment, and were more likely to belong to at least one community organization. However, these participants were not any more likely to be involved in a relationship than those in the other two groups. In addition, there were no group differences in the reported number of friends or the frequency of visits with friends, or in what participants described as their principal activity (i.e., student, employed or unemployed). Discussion: There are a number of benefits to social functioning associated with having had epilepsy surgery and being seizure-free in the past year. Further research is recommended to increase our understanding of the mechanisms involved in the social and personal challenges that these individuals face.

Objectives. We used population-based data to evaluate whether caring for a child with health problems had implications for caregiver health after we controlled for relevant covariates. Methods. We used data on 9401 children and their caregivers from a population-based Canadian study. We performed analyses to compare 3633 healthy children with 2485 children with health problems. Caregiver health outcomes included chronic conditions, activity limitations, self-reported general health, depressive symptoms, social support, family functioning, and marital satisfaction. Covariates included family (single-parent status, number of children, income adequacy), caregiver (gender, age, education, smoking status, biological relationship to child), and child (age, gender) characteristics. Results. Logistic regression showed that caregivers of children with health problems had more than twice the odds of reporting chronic conditions, activity limitations, and elevated depressive symptoms, and had greater odds of reporting poorer general health than did caregivers of healthy children. Conclusions. Caregivers of children with health problems had substantially greater odds of health problems than did caregivers of healthy children. The findings are consistent with the movement toward family-centered services recognizing the link between caregivers' health and health of the children for whom they care.

Children and parents evaluate the child’s quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N = 375) and their parents (N = 378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P < 0.01). Discrepancies were greatest for the subscales of Secrecy (0.24, P < 0.01) and Present Concerns (0.32, P < 0.01). School placement correlated with discrepancy in the Intrapersonal/Emotional subscale (r = 0.19, P < 0.05), and the child’s age at testing correlated with discrepancy of the Total measure (r = 0.15, P < 0.01). This study demonstrates that parent perspectives alone are insufficient to measure their child’s QOL. The CHEQOL-25 is a practical tool, with complementary parent and child versions, which can be used to determine health-related quality of life in children with epilepsy.

Children and youth with cerebral palsy (CP) experience difficulties in their ability to move, problem solve, socialize, and communicate, associated with limitations in activities in all environments. They are at risk for lower participation in social and leisure activities critical in fostering friendships, developing interests, and promoting well-being. Little is known about involvement in leisure activities and their determinants. This systematic review aims to describe participation in leisure activities by children with CP and identify personal and environmental factors that influence participation. The following databases were reviewed--CINAHL, Medline, Cochrane, Web of Science, OT-seeker, and REHABDATA--using the keywords participation, cerebral palsy, leisure, and recreation. The literature to date suggests that children with physical disabilities are less involved in leisure activities than their peers; activities are more passive, home based, and lack variety. Several factors influence participation in leisure activities, including age, gender, activity limitations, family preferences and coping, motivation, and environmental resources and supports.

About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families.The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD. A subsample of children from the larger study (n = 49) were assessed using standardized measures of cognitive and adaptive functioning.Factor analysis revealed that a four-component model explained 51.12% of the variance. Cronbach's alpha was calculated for each of the four factors and for the scale as a whole, and ranged from 0.75 to 0.85, suggesting a high level of internal consistency. Construct validity was tested through comparisons with the results of standardized measures of child functioning. Predicted relationships for factors one, two and three were statistically significant and in the expected directions. Predictions for factor four were partially supported. AMC-26 was also expected to serve as an indicator of caregiver distress. Drawing on a sample of caregivers from the larger study (n = 251) the model was found to be significant and explained 23% of the variance in caregiver depressive symptoms (R(2) = .053, F (1, 249) = 14.06, P .001).Based on these observations, the authors contend that AMC-26 may be used by clinicians and researchers as a tool to capture child function and child health complexity. Such a measure may help elucidate the relationships between child complexity and family well-being. This is an important avenue for further investigation.

Few studies have examined the potential of linked administrative data for research on child health. This analysis describes the application of a non-categorical survey-based tool, the Children with Special Health Care Needs (CSHCN) Screener, to administrative data.Five Screener items were applied to linked administrative health data from Population Data British Columbia. Hospital admissions and demographic and community characteristics for a cohort of children aged 6 to 10 in 2006 were examined to validate the use of these items.Overall, 17.5% of children were identified as CSHCN. An estimated 14% of children used more medical care and 5.2% had more functional limitations than is usual for children of the same age; 3.3% were prescribed long-term medication; 1.9% needed/received treatment or counselling; and 0.1% needed/received special therapy. Boys were more likely than girls to be identified as CSHCN.With some limitations, the CSHCN Screener can be applied to Canadian administrative health data.

This qualitative study explores how children and adolescents with medically refractory seizures experience the impact of epilepsy on their quality of life (QOL) within the domains of physical, emotional/behavioral, social, and cognitive/academic function. Semi-structured, open-ended interviews were conducted with 49 participants (7-18 years old). These narratives constituted our data source. Analyses involved inductive generation of themes/subthemes and connection of these themes to generate a theoretical representation of their relationships. These themes reflected the negative impact of epilepsy on QOL: physical-excessive fatigue as a barrier to academic and social pursuits; emotional/behavioral-intermittent emotional distress heightened by epilepsy-related factors such as unpredictability of seizures; social-profound social isolation; and cognitive/academic-discontinuous, fragmented learning. Youths perceive seizures as the major barrier to their sense of normalcy, setting them apart from others. Findings provide direction for assessment and evidence for developing or enhancing clinical interventions and community/school-based programs that might mitigate some of these negative experiences.

Canadian federal policy provides a framework for the immigration and health experiences of immigrant women. The official immigration category under which a migrant is admitted determines to what degree her right to remain in the country (immigration status) is precarious. Women immigrants fall primarily into the more dependent categories and they experience barriers to access to health services arising from this precarious status. Federal immigration and health policies create direct barriers to health through regulation of immigrants’ access to services as well as unintended secondary barriers. These direct and secondary policy barriers intersect with each other and with socio-cultural barriers arising from the migrant’s socio-economic and ethno-cultural background to undermine equitable access to health for immigrant women living in Canada.

High-spin states of the $^{44}$Sc nucleus, populated in the 68 MeV $^{18}$O + $^{30}$Si reaction, have been studied in a $\gamma-\gamma$-recoil coincidence experiment. The detailed decay pattern, with various paths and cross-transitions, has been extended up to 9.1 MeV. High-quality DCO and polarization information assign spins and parities for the majority of the observed levels. The negative-parity states are discussed and compared with rotational bands in neighbouring $f_{7/2}$-shell nuclei.

We have applied the NRL tight-binding (TB) method to study the mechanical and electronic properties of the heavy elements Pb and Po. The predicted properties include ground-state structure, electronic band structure and elastic moduli. Phonon-dispersion curves at T=0 K were also determined. As demonstrated in this paper, the results are in good agreement with the full potential linearized augmented plane wave calculations and the available experimental data. In addition, we performed molecular-dynamics simulations to obtain various temperature-dependent quantities of Pb such as the atomic mean-square displacement, Debye-Waller factor and thermal expansion coefficient. With our TB we have also calculated the vacancy formation energy of Pb. Finally, we report on the effects of spin–orbit coupling, through our TB scheme, on electronic structure and energetic properties.

Summary: Purpose: Assumptions regarding the benefits of seizure control after pediatric epilepsy surgery for cognitive, psychosocial, and family function were explored in a prospective study of 51 children with intractable epilepsy. Methods: Thirty children who underwent surgery were studied before and 1 year after surgery, and a comparison group of 21 children with medically refractory seizures was examined at comparable times. Results: One year after surgery, 57% of the surgical group was seizure free. Seizure status after surgery did not predict change over time in any of the areas measured. Cognitive and psychosocial status did not change over time in either group, and the strongest predictor of individual change in psychosocial status in the surgical group was baseline level of function. Within the surgical group, a trend toward an increase in independence promotion was noted in the family, but the children’s satisfaction with the family declined. Conclusions: These findings challenge the assumption that elimination of seizures will result in improved cognitive, psychosocial, and family functioning, at least within the first year after surgery. Key Words: Epilepsy surgery—Childhood— Cognitive—Psychosocial—Family.

Children with epilepsy have known deficits on objective measures of learning and memory. Parents and children report that memory deficits have a negative impact on everyday functioning. In adults with epilepsy, self-report of memory is more strongly associated with depression than performance on memory tests. We investigated the cognitive and psychological predictors of everyday memory in 37 children with medically intractable epilepsy, using children's self-report and parent ratings of everyday memory performance and standard tests of attention, intelligence, visual and verbal memory, working memory, and mood/emotional state. Standard multiple regressions demonstrated that only a parent report measure of attention uniquely and significantly ( P ⩽0.05) predicted estimates of everyday memory performance, accounting for 33% of variance in children's own ratings and 27% of variance in parents' ratings. Findings suggest that everyday memory in children with intractable epilepsy differs from that of adults; attentional problems may underlie everyday memory problems in these children.

High-spin states in 45Sc, 45Ti and 43Ca were studied by means of multiple γ- and γ-recoil-coincidences with the use of the GASP array and the Recoil Mass Spectrometer. The nuclei were populated in the 60 MeV 18O +30Si reaction. For the DSAM lifetime measurement the 35Cl +12C reversed kinematics reaction was used. In the article, a complete description of the experimental techniques used in course of the performed experiments is presented. The level schemes and the detailed information on the observed state properties, including B(M1) and B(E2) transition rates are inserted as well as their shell model interpretation.

High spin states in nuclei around 208Pb were populated in deep inelastic collisions of 76Ge, 136Xe, and 208Pb projectiles with 208Pb targets at beam energies about 12% above the Coulomb barrier. New states in 209Pb were found by measuring γ-γ-coincidences. They are interpreted as the yrast states that originate from the coupling of one neutron to the lowest excitations of the 208Pb core. The results are discussed in the frame of the shell model.

Quality of life (QoL) is an important outcome of health interventions for children and youth with cerebral palsy (CP). When planning interventions it is fundamental to understand what constitutes a good QoL, a subjective construct, and what factors are important to consider from both parents' and children's perspectives.We used a grounded theory methodology to explore parents' perspectives on the factors that are important for the QoL of their adolescents with CP. Fourteen parents were interviewed using a purposeful sampling strategy, followed by theoretical sampling until saturation was reached.Parents reflected on several important aspects of their children's QoL. In particular, they described how their trajectories as parents of a child with a disability have contributed to their adolescents' current well-being. Over time, parents' hopes for a cure were transformed into hopes for their child's happiness. This trajectory was influenced by the adolescents' intrinsic characteristics and the parents' strategies to overcome challenges and was informed by the parents' and their children's ability to make choices in pursuit of their preferences.Adolescents' and parents' accounts should be considered when planning interventions for adolescents with disabilities. It is important to consider parents' personal characteristics, experiences and the strategies that have been proven to be efficacious in improving their children's QoL and to understand their need to make choices relating to participation and accessibility in order to promote QoL for this at-risk population. Implications for Rehabilitation Parents' trajectory on raising a child with a disability is important for understanding adolescents' QoL. Parents' characteristics and environmental factors influence adolescents' well-being. Hope and choice experiences by parents of children with CP are important for their children's QoL. Transition from pediatric to adult services are required to address disability-related aspects as well as adolescent needs for intimacy, sexuality and planning for their future during adolescence.

The high-spin states in 45 Sc were studied with the GASP multidetector array. The nuclei were excited by the 30 Si( 18 O,p2n) 45 Sc reaction at E LAB =60 MeV and separated with the Recoil Mass Spectrometer. Several new high-spin levels extending the known single-particle and collective structures were observed. Energies of the negative-parity states agree with the shell model predictions whereas the positive-parity-intruder rotational band extends up to very high rotational frequencies and continues beyond the maximum angular momentum available from the single-particle f 7 2 configuration.

High-spin states of the 42Ca nucleus, populated in the 68 MeV 18O + 30Si reaction, have been studied in a γ-γ-recoil coincidence experiment. The level scheme of 42Ca has been extended up to 13.7 MeV. An elaborate decay pattern with various paths, together with high-quality DCO and polarization information assigns spins and parities for almost all observed levels. The sequence of non-yrast positive-parity states is discussed and compared with highly deformed bands in 36Ar and 40Ca.