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.

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.

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.

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.

Gymnastic-Based Movement Therapy for Children With Neurodevelopmental Disabilities: Results From a Pilot Feasibility Study.

Background: Developmental and behavioral issues often limit the participation of children with neurodevelopmental disabilities (NDD) in community-based activities with their peers, which decreases opportunities for their social learning and development. Parents of children with NDD seek out programs that address physical and psychosocial development. Several studies already support the positive effects for the child to attend physical activity programs (PAPs). However, these studies are highly prone to biases and Hawthorne effect. In the planning stage of a large prospective study to assess the effectiveness of PAPs we reviewed the records of children who participated in a gymnastic-based program, the Empowering Steps Movement Therapy (ESMT). Besides generating useful data for developing the prospective study we thought these data reflect the rate of changes in context of normal practice in a naturalistic environment; therefore protected from Hawthorne effect and other biases. Design: This is a historical cohort: the files of 67 children with NDD were examined across a 2-year period (Jan 2011 to Jan 2013). As part of standard practice, the ESMT therapists document changes in motor function every 6 months, using the ESMT's proprietary motor scale. Parents also completed a parental questionnaire in June 2011 regarding their perceptions of changes in their child's physical and psychosocial function, as well as family functioning since their child started the program. Results: Linear Mixed Effects Model clearly identified three groups according to changes in motor function: the ones with rapid changes (mostly functional children with autism spectrum disorder: n = 13), the ones with moderate changes (different types of NDD diagnoses: n = 41) and the ones that did not change or even decreased motor skills over the follow-up (children with complex diseases or uncontrolled epilepsy despite treatment: n = 13). Parental questionnaires (n = 39) reported improvement in most of the children's physical and psychosocial abilities; they also indicated improvement in some of the family parameters. There was no association between the changes in children's motor functions and parents' responses to the questionnaire. Conclusion: Despite limitations due to the retrospective nature of the study, the absence of a control group and the absence of validated measurement tools, the observed positive effects of attending movement therapy center on motor performance and psychosocial development confirm in a naturalistic environment what has been shown in context of clinical trials or quasi-experimental studies. These results are not conclusive. They warrant further, rigorous investigation using validated instruments, independent assessors, and control groups.

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.

Changes in the health of mothers of children with neurodevelopmental disabilities: An administrative data study.

BACKGROUND: Using linked administrative health data, this study compared the health and healthcare service utilization between mothers of children with and without neurodevelopmental disabilities (NDD), before, during, and after the birth of a child. METHODS: The population (N = 25,388) was based on a cohort of children born in 2000 and who were, along with their mothers, continuously registered with the British Columbia's universal health insurance program between 2000 and 2007. RESULTS: Compared to mothers of children without NDD, mothers of children with NDD were more likely to have chronic conditions and higher service utilization before child birth. Mothers of children with NDD showed a smaller increase in physician visits in the year before birth but a greater increase in different prescription drugs in the year after birth. There was no further divergence (or convergence) in health and service utilization between the groups in the 7-year period post-birth. CONCLUSIONS: Differences in health and healthcare service utilization between mothers of children with and without NDD existed before the birth of the child and did not diverge in the 7 years post-birth. Replication of these findings is warranted as well as follow-up analyses examining longer term outcomes for mothers beyond 7 years post-birth.

Using Canadian administrative health data to examine the health of caregivers of children with and without health problems: A demonstration of feasibility.

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.

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.

Safety-Related Concerns of Parents for Children with Disabilities and Chronic Conditions.

OBJECTIVE: The aim of this study was to explore the safety-related concerns of parents of children with a variety of disabilities and chronic conditions. We sought to examine concerns common to parents as they related to their children's delayed development, behavioral difficulties, and chronic conditions. METHOD: A qualitative approach guided by grounded theory was used. Participants included parents of children between 1 and 5 years with a disability or chronic condition who resided in British Columbia, Canada. Data were collected using in-depth in-person interviews and analysis conducted using constant comparative methods. RESULTS: Three themes were identified that reflected parental safety concerns. These included concerns about: (1) Child's level of understanding about danger; (2) Child interactions with physical environment (concerns about child movement, concerns about ingestions); (3) Child interactions with social environment. Difficult-to-manage behaviors and cognitive limitations exacerbated parents' safety concerns. Parents were found to share safety concerns about movement and ingestions across a range of types of child health conditions. CONCLUSION: For themes of child movement and child ingestions, findings supported the utility of a noncategorical approach for the design of injury prevention strategies for these types of concerns. Parent concerns about child lack of understanding about risk and social safety concerns were linked to a smaller number of conditions and supported a more tailored approach. Flexible approaches may be needed that can offer both generic and specific information and to meet the needs of parents and clinicians.

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.

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.

Diagnostic status, functional status and complexity among Canadian children with neurodevelopmental disorders and disabilities: a population-based study.

PURPOSE: To identify and describe selected key characteristics of children with neurodevelopmental disorders and disabilities (NDD/D) in a national disability survey database. METHOD: Secondary analysis of data on children aged 5-14 years in the Canadian Participation and Activity Limitation Survey (PALS). Children with NDD/D were ascertained from ICD-10 diagnoses "fine-tuned" with functional limitation information, and classified into six predetermined NDD/D subtypes by independent expert evaluators. RESULTS: Children with NDD/D accounted for 73.5% of children with disabilities. Amongst children with a single NDD/D type, 28.8% were in the Cognition-Learning subgroup, 22.2% Psychological, 19.9% Social interactive, 13.3% Sensory, 10.6% Motor and 5.2% Speech-Language disorders/disabilities. Complexity, both diagnostic (more than one ICD-10 diagnosis) and functional (more than one parent-identified functional limitation), was encountered frequently though variably across NDD/D subtypes. In aligning parent-identified functional limitation information with researcher-ascertained assignment of children to NDD/D subgroups, matching with additional limitations (61.3% of children) occurred far more commonly than simple 1:1 matches (14.0%) or non-matching (24.7%). CONCLUSIONS: Conceptual, definitional and terminology issues affect population-based research on children with NDD/D. Ascertainment methods can use diagnostic as well as functional information. Diagnostic information alone is likely to under-represent the complexity and needs of children with NDD/D and their families.

Comparing participation in activities among children with disabilities.

INTRODUCTION: Compared to typically developing peers, children with disabilities due to neurodevelopmental disorders and disabilities (NDD/D) and to chronic medical conditions (CMC) have reduced participation in activities. The extent to which these two groups of children have different levels of participation is unknown and was examined in this study. METHODS: The 2006 Participation and Activity Limitation Survey children dataset collected by Statistics Canada was analyzed. Children with disabilities due to NDD/D and CMC were identified following review and classification of all ICD-10 codes in the dataset by two pediatricians. Dependent variables were parent-reported child participation in supervised and unsupervised physical activities within and outside of school, educational activities, and social/recreational activities. Logistic regression analyses, with relevant covariates (child and familial characteristics), were used to analyze the data. RESULTS: Children with NDD/D were significantly more likely to take part in supervised and unsupervised physical activity at school than children with CMC (p<0.001). A similar trend was observed for participation in school outings, although the effect was not significant at p<0.01. Finally, a trend in the opposite direction was observed for educational activities, as children with NDD/D were less likely to take part in these activities than children with CMC. DISCUSSION: Finding decreased participation among children with CMC compared with NDD/D was not predicted a priori but has potential implications for their mental and physical health. CONCLUSIONS: Gaining a better understanding of the barriers to participation in physical activity may contribute to improving the overall health status of children with CMC.

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.

Antidepressant use in children and adolescents: Practice touch points to guide paediatricians.

Depression in children and youth is common, and requires an understanding of its developmental character and associated comorbid conditions. Initial treatment of mild depression involves active supportive measures with a focus on symptom reduction and improved daily function. Where pharmacotherapy is warranted, evidence supports the use of selective serotonin reuptake inhibitor (SSRI) antidepressants, particularly fluoxetine, to manage moderate/severe depression. SSRI treatment should include a comprehensive management plan in the context of interdisciplinary care, an understanding of its pharmacology and clearly articulated goals for symptom reduction, functional status tracking (school, home and peers) and monitoring for the emergence of suicidal ideation/behaviour. For children with more severe symptoms or complicating factors (comorbid conditions), referral to mental health clinicians should be considered. Use of an SSRI should be associated with family/patient education about medication effects, specific social and health goals that promote self-esteem, improved function and close monitoring for adverse effects.

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.