Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review.

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

Topography of behavior problems among children with neurodevelopmental conditions: Profile differences and overlaps.

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.

Changes in Caregiver Health in the Years Surrounding the Birth of a Child With Health Problems: Administrative Data From British Columbia.

BACKGROUND: Caregivers of children with health problems (CHPs; usually mothers) experience more physical and psychological health problems than those of children without health problems (non-CHPs). Primarily cross-sectional and survey-driven, this literature has not yet explored whether these health differences existed before the birth of the CHPs, or are exacerbated postbirth. METHODS: Using linked administrative health data on all mother-child dyads for children born in the year 2000 in British Columbia, Canada, we examined maternal health before, during, and after the birth of CHPs, and compared it between mothers of CHPs and non-CHPs with piecewise growth curve modeling. RESULTS: Compared with mothers of non-CHPs, mothers of CHPs had more physician visits (8.09 vs. 11.07), more medication types (1.81 vs. 2.60), and were more likely to be diagnosed with selected health conditions (30.9% vs. 42.5%) 4 years before the birth of the child. Over the 7-year postbirth period, the health of the 2 groups of mothers further diverged: while mothers of CHPs showed increases on physician visits and types of medication, mothers of non-CHPs did not experience any changes in physician visits and had less steep increases for types of medication. CONCLUSIONS: Health issues associated with having a child with a health problem may begin well before the birth of the child, but also appear to be exacerbated postbirth. The health challenges of caregivers of CHPs may be multifactorial, involving both preexisting conditions and the stresses associated with caring for a child with health problems.

Behavioural and emotional concerns reported by parents of children attending a neurodevelopmental diagnostic centre.

BACKGROUND: Behavioural and emotional problems are a salient concern for parents of children with neurodisability, but little is known about the nature of such concerns in this population, nor about the distribution of concern types across ostensibly different subpopulations. METHODS: Information about behavioural and emotional concerns was extracted from clinical reports of developmental paediatricians (N = 12) who had assessed children aged 3 to 8 years (N = 129) through three clinics at a major developmental and rehabilitation service centre. All concerns were captured at a granular level. A two-stage, consensus-based interdisciplinary concept-sorting technique was used to identify and group thematically related behavioural and emotional concerns into First Stage Groupings, intended to preserve detail and specificity, and a reduced number of Second Stage Clusters. RESULTS: A total of 669 discrete concerns were encountered, aggregated to 58 First Stage Concern Groupings and 28 Second Stage Concern Clusters. Findings of the salience of Groupings related to Attention, Concentration and Distractibility, and Anxiousness, Shyness, and Emotional Sensitivity reflect existing literature for children with neurodevelopmental concerns. "Social Isolation/Peer Engagement," "Tantrums/Outbursts/Meltdowns" and "Volatility/Self-regulation Difficulties," and "Sensory Issues" emerged as areas of significant concern and salience as well. Across clinics, three Clusters recurred among the top five observed for each clinic: "Tantrums/Outbursts/Meltdowns," "Inflexibility/Gets Stuck or Fixated," and "Social Behaviours." CONCLUSIONS: This rich descriptive dataset affords insight into the phenomenology of behaviour and emotional concerns in the daily lives of parents whose children have known or suspected neurodisability. Study findings can inform and sensitize clinicians working with this population. Usefulness is enhanced by inclusion of behavioural material that is subthreshold for a formal psychopathologic diagnosis. Certain concern types are encountered commonly across different clinical subpopulations, supporting a noncategorical view of behavioural and emotional problems as functional attributes that cross neurodisability diagnostic categories.

Children with neurodevelopmental disorders and disabilities: a population-based study of healthcare service utilization using administrative data.

AIM: 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. METHOD: 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. RESULTS: 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. INTERPRETATION: 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. WHAT THIS PAPER ADDS: 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.

Child functional characteristics explain child and family outcomes better than diagnosis: Population-based study of children with autism or other neurodevelopmental disorders/disabilities.

BACKGROUND: Allocation of resources for services and supports for children with neurodevelopmental disorders/disabilities (NDD/D) is often based on the presence of specific health conditions. This study investigated the relative roles of a child's diagnosed health condition and neurodevelopmental and related functional characteristics in explaining child and family health and well-being. DATA AND METHODS: The data on children with NDD/D (ages 5 to 14; weighted n = 120,700) are from the 2006 Participation and Activity Limitation Survey (PALS), a population-based Canadian survey of parents of children with functional limitations/disabilities. Direct and indirect effects of child diagnosis status-autism spectrum disorder (ASD)/not ASD-and functional characteristics (particularly, ASD-related impairments in speech, cognition, and emotion and behaviour) on child participation and family health and well-being were investigated in a series of structural equation models, while controlling for covariates. RESULTS: All models adequately fitted the data. Child ASD diagnosis was significantly associated with child participation and family health and well-being. When ASD-related child functional characteristics were added to the model, all direct effects from child diagnosis on child and family outcomes disappeared; the effect of child diagnosis on child and family outcomes was fully mediated via ASD-related child functional characteristics. INTERPRETATION: Children's neurodevelopmental functional characteristics are integral to understanding the child and family health-related impact of neurodevelopmental disorders such as ASD. These findings have implications for the relative weighting given to functional versus diagnosis-specific factors in considering needs for services and supports.

Developing a non-categorical measure of child health using administrative data.

BACKGROUND: 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. DATA AND METHODS: 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. RESULTS: 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. INTERPRETATION: With some limitations, the CSHCN Screener can be applied to Canadian administrative health data.

Developmental milestones among Aboriginal children in Canada.

BACKGROUND: Windows of achievement provide age ranges for the attainment of early developmental skills. Group-specific research is warranted given that development may be influenced by social or cultural factors. OBJECTIVES: To examine developmental milestones for Inuit, Métis and off-reserve First Nation children in Canada, based on developmental domains collected from the 2006 Aboriginal Children's Survey. Sociodemographic and health predictors of risk for developmental delay were also examined. RESULTS: The ranges in which children achieve certain developmental milestones are presented. Gross motor and self-help skills were found to be achieved earlier (across the three Aboriginal groups), whereas language skills were achieved slightly later than in Canadian children in general. Furthermore, health factors (eg, low birth weight, chronic health conditions) were associated with late achievement of developmental outcomes even when sociodemographic characteristics were considered. CONCLUSIONS: Findings suggest that the timing of milestone achievement may differ for Aboriginal children, highlighting the importance of establishing culturally specific norms and standards rather than relying on those derived from general populations. This information may be useful for practitioners and parents interested in identifying the age ranges for development, as well as age ranges indicating potential for developmental risk and opportunities for early intervention among Aboriginal children.

HISTORIQUE: Les tranches d'âge auxquelles certaines habiletés précoces du développement sont acquises s'inscrivent dans des fenêtres de réalisation. Des recherches au sein de certains groupes s'imposent, puisque des facteurs sociaux ou culturels peuvent influer sur le développement. OBJECTIFS: La présente étude visait à examiner les étapes du développement des enfants inuits, métis et des Premières nations vivant hors réserve au Canada, d'après les étapes du développement colligées dans l'Enquête sur les enfants autochtones de 2006. Les chercheurs ont également évalué les données sociodémographiques et les prédicteurs de risque de retard du développement liés à la santé. RÉSULTATS: Les tranches d'âge auxquelles les enfants atteignent certaines étapes du développement sont présentées. Les étapes liées à la motricité globale et à l'autonomie étaient réalisées plus tôt (dans les trois groupes autochtones), tandis que les aptitudes langagières l'étaient un peu plus tard que chez l'ensemble des enfants canadiens. De plus, des facteurs liés à la santé (p. ex., petit poids de naissance, maladie chronique) s'associaient à l'atteinte tardive des étapes du développement, même lorsqu'on tenait compte des caractéristiques sociodémographiques. CONCLUSIONS: Selon les observations, l'atteinte des étapes du développement diffère peut-être chez les enfants autochtones. Il est donc d'autant plus important de dégager des normes adaptées à la culture plutôt que de se fier à celles dérivées des populations en général. Cette information peut être utile pour les praticiens et les parents désireux de déterminer les tranches d'âge pour l'atteinte des étapes du développement et celles qui évoquent un problème de développement, de même que les possibilités d'intervention rapide auprès des enfants autochtones.

Patterns of participation across a range of activities among Canadian children with neurodevelopmental disorders and disabilities.

AIM: Children with neurodevelopmental disorders and disabilities (NDD/D) may experience barriers or restrictions to participation in activities. We examined the extent to which this is a problem for children in particular NDD/D subgroups. METHOD: We analysed the 2006 Participation and Activity Limitation Survey children data set (5-14y) collected by Statistics Canada (n = 7072 and weighted n = 340 340), having identified the following NDD/D subgroups (weighted n = 77 470; 69.1% males and 30.9% females): gross or gross and fine motor (Motor(+) ), communication/cognition/learning (CCL), social interaction, neurosensory (vision or vision and hearing), and psychological. We used logistic regression to assess differences in participation in supervised and unsupervised physical activities, educational activities, and social/recreational activities. RESULTS: Participation in some school-based activities differed significantly among children in the NDD/D subgroups (p<0.01). Participation in supervised and unsupervised physical activity was lowest for the Motor(+) and social interaction subgroups, and highest for the neurosensory and CCL subgroups. Participation for the psychological subgroup was mostly in the intermediate range. In contrast, participation in educational activities was lowest for the social interaction and psychological subgroups, and higher for the other groups. INTERPRETATION: Given the importance of participation to child health and well-being, these differences in participation in various in-school activities highlight an area of need regarding policies/programmes to support subgroups of children with NDD/D.

Proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs.

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

Changes over time in the health of caregivers of children with health problems: growth-curve findings from a 10-year Canadian population-based study.

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.

Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review.

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) "peer support networks," (ii) "children with neurodevelopmental and intellectual disabilities" and (iii) "family caregiver outcomes." Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.

Impacts of Participation in Community-Based Physical Activity Programs on Cognitive Functions of Children and Youth with Neurodevelopmental Disabilities: A Scoping Review.

This review paper aimed to undertake an extensive exploration of the extent, range, and nature of research activities regarding the effect and emerging evidence in the field of physical activity interventions on cognitive development among children and youth (0-17.99 years) with neurodevelopmental disorders (NDD), and to help identify key gaps in research and determine precise research questions for future investigations. To carry out this scoping review, five electronic databases were searched. A total of 12,097 articles were retrieved via search efforts with an additional 93 articles identified from the identified review papers. Sixty articles were eligible for inclusion. The results of this scoping review revealed many positive key cognitive outcomes related to physical activity including, but not limited to: focus, attention, self-control, cognitive process, and alertness. No studies reported a negative association between physical activity and cognitive outcomes. Based on the findings from this scoping review, physical activity appears to have a favorable impact on the cognitive outcomes of children and youth with NDD.

Performance measurement and improvement frameworks in health, education and social services systems: a systematic review.

PURPOSE: To perform a systematic review, supplemented by a targeted grey literature scan, for performance measurement and improvement frameworks within and across the health, education and social service systems. The intended outcome was the creation of a foundation of evidence to inform the development of cross-sectoral quality improvement frameworks. DATA SOURCES: MEDLINE, CINAHL, PsycINFO, ERIC, EMBASE, Social Services Abstracts, Social Work Abstracts and Education Index Full Text were searched up to April/May 2007. In addition, 26 governmental and 27 organizational websites were searched. STUDY SELECTION: English language material with a publication date of 1986 or more recent that described a health, education or social services multidimensional framework for performance measurement and improvement. Data extraction The framework name; administrative sector; level of application; setting; population of interest; categories of quality described within the framework; country of application; and citations to other performance measurement and improvement frameworks were extracted from each article. RESULTS: In total, 111 frameworks were identified. Most frameworks (n = 97) were developed in or for the health sector. A concept sorting exercise identified 16 quality concepts applicable across many settings, sectors and levels of application. CONCLUSION: This systematic review of quality domains will be relevant and useful to those who are developing and using performance measurement and improvement frameworks for adult and child populations within or across the health, social service or education sectors.

Service adequacy and the relation between child behavior problems and negative family impact reported by primary caregivers of children with neurodevelopmental conditions.

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.

Exploring the terminology and descriptions of services that connect children with neurodisability and their families to needed support in the community: a scoping review protocol.

OBJECTIVE: This scoping review aims to fill a gap in knowledge on terminology and descriptions of services that connect children with neurodisability and their families to needed support in the community. INTRODUCTION: Children with neurodisability represent a significant population with a demonstrated need for coordinated support. Patient navigation is a concept that was founded on the principle of coordinating care for patients based on individual needs. Despite the history of patient navigation, a definition for the concept itself is lacking. Moreover, children with neurodisability and their families are not often the target population of such initiatives. It is not known whether existing terminology and descriptions encompass the particular needs of children with neurodisability and their families. INCLUSION CRITERIA: This review will examine published, peer-reviewed articles related to navigation-type resources, support, and services within the community as intended for children under the age of 18 years with neurodisability, and their families. All eligible studies pertaining to this context will be examined. METHODS: A preliminary search was completed to find initial search terms, upon which a full search strategy was developed. Search results yielded from PubMed (NCBI), MEDLINE (Ovid), and CINAHL (EBSCO) were screened to ensure articles were peer-reviewed, published in English from 1990 onward, and relevant to both children with neurodisability/their families and navigation-related resources. A full-text review of relevant articles will be conducted and data extracted using the included extraction tool. Extracted terminology and concepts will be analyzed using a modified grounded theory approach, which will inform a working definition of navigational services and related terms. SCOPING REVIEW REGISTRATION: Open Science Framework: https://osf.io/cbvy9.

Health among caregivers of children with health problems: findings from a Canadian population-based study.

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.

Continuity of care for children with complex chronic health conditions: parents' perspectives.

BACKGROUND: Continuity of care has been explored largely from academic and service provider perspectives, and in relation to adult patient/client groups. We interviewed parents of children with complex chronic health conditions to examine how their experiences and perceptions of continuity of care fit with these perspectives; and to identify the salient factors in the experience of, and factors contributing to, continuity in this population. METHODS: Parents of 47 elementary school-aged children with spina bifida, Down syndrome, attention-deficit/hyperactivity disorder, Duchenne muscular dystrophy or cystic fibrosis participated in semi-structured interviews. Parents described and mapped the pattern of their interactions with service providers over time in all domains relevant to their child's health, well-being, and development (medical, rehabilitational, educational, and social supportive services), with particular attention paid to their perceptions of connectedness or coherency in these interactions. Verbatim transcripts were analyzed thematically using a framework approach to impose structure regarding parents' perspectives on continuity of care. RESULTS: Existing academic concepts of relational, informational and management continuity were all discernable in parents' narratives. A thorough knowledge of the child on the part of service providers emerged as extremely important to parents; such knowledge was underpinned by continuity of personal relationships, principally, and also by written information. For this population, notions of continuity extend to the full range of service providers these children and families need to achieve optimal health status, and are not limited to physicians and nurses. Communication among providers was seen as integral to perceived continuity. Compartmentalization of services and information led to parents assuming a necessary, though at times, uncomfortable, coordinating role. Geographic factors, institutional structures and practices, provider attitudes, and, on occasion, parent preferences and judgments, were all found to create barriers to "seamless" management and provision of care continuity across providers, settings, and sectors. CONCLUSIONS: These findings add new perspectives to the understanding of continuity within chronically ill children's health care. They are relevant to contemporary initiatives to improve continuity of services to children with special health care needs, demonstrate the need for parental support of their important role in maintaining continuity, and suggest avenues for further research.

The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders.

PURPOSE: Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both 'Neuro' and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. METHOD: The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4 to 11-year-old children: caregivers of children with a 'Neuro' disorder and externalising behaviour problems (Both; n=414), caregivers of children with a 'Neuro' disorder only (Neuro Only; n=750), caregivers of children with an externalising behaviour problem only (Ext Only; n=1067), and caregivers of children with neither health condition (Neither; n=7236). RESULTS: Caregivers in the 'Both' group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the 'Neither' group. This group also exhibited higher depression scores, experienced more problematic family functioning, and reported lower social support than the 'Neither' group. Scores for caregivers in the 'Ext Only' and 'Neuro Only' groups tended to lie between the 'Both' and 'Neither' group scores and often did not differ from one another. CONCLUSIONS: Caregivers of children with both neurodevelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing children's behaviour problems, health care professionals should also consider caregiver physical and psychosocial health as this may also have an impact on children's well-being.

The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders.

PURPOSE: Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both Neuro and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. METHOD: The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4- to 11-year-old children: caregivers of children with a Neuro disorder and externalizing behaviour problems (Both; n = 414), caregivers of children with a Neuro disorder only (Neuro Only; n = 750), caregivers of children with an externalizing behaviour problem only (Ext Only; n = 1067), and caregivers of children with neither health condition (Neither; n = 7236). RESULTS: Caregivers in the Both group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the Neither group. This group also exhibited higher depression scores, experienced more problematic family functioning and reported lower social support than the Neither group. Scores for caregivers in the Ext Only and Neuro Only groups tended to lie between the Both and Neither group scores and often did not differ from one another. CONCLUSIONS: Caregivers of children with both neurodevelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing children's behaviour problems, health care professionals should also consider caregiver physical and psychosocial health, as this may also have an impact on children's well-being.