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1.
BMC Health Serv Res ; 22(1): 214, 2022 Feb 17.
Artigo em Inglês | MEDLINE | ID: mdl-35177039

RESUMO

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.


Assuntos
Pessoas com Deficiência , Navegação de Pacientes , Criança , Humanos , Grupos Populacionais
2.
Child Care Health Dev ; 46(1): 149-153, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31714607

RESUMO

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.


Assuntos
Transtorno do Espectro Autista/psicologia , Paralisia Cerebral/psicologia , Deficiências do Desenvolvimento/psicologia , Deficiência Intelectual/psicologia , Comportamento Problema/psicologia , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Comportamento Social , Inquéritos e Questionários
3.
Med Care ; 57(5): 369-376, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30908379

RESUMO

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.


Assuntos
Saúde da Criança , Nível de Saúde , Saúde Materna/tendências , Mães/psicologia , Adulto , Colúmbia Britânica , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Inquéritos e Questionários
4.
Child Care Health Dev ; 44(5): 711-720, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30043480

RESUMO

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.


Assuntos
Transtornos do Comportamento Infantil/diagnóstico , Serviços de Saúde da Criança , Deficiências do Desenvolvimento/diagnóstico , Pais/psicologia , Atitude do Pessoal de Saúde , Criança , Transtornos do Comportamento Infantil/psicologia , Transtornos do Comportamento Infantil/reabilitação , Pré-Escolar , Deficiências do Desenvolvimento/psicologia , Deficiências do Desenvolvimento/reabilitação , Emoções , Feminino , Humanos , Masculino , Pais/educação , Relações Profissional-Família , Pesquisa Qualitativa , Estudos Retrospectivos , Comportamento Social
5.
Dev Med Child Neurol ; 59(12): 1284-1290, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28905997

RESUMO

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.


Assuntos
Hospitalização/estatística & dados numéricos , Transtornos do Neurodesenvolvimento/terapia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Colúmbia Britânica/epidemiologia , Criança , Feminino , Humanos , Masculino , Transtornos do Neurodesenvolvimento/diagnóstico , Transtornos do Neurodesenvolvimento/epidemiologia
6.
Health Rep ; 26(2): 9-16, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25692939

RESUMO

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.


Assuntos
Saúde da Criança/estatística & dados numéricos , Doença Crônica/epidemiologia , Doença Crônica/terapia , Crianças com Deficiência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Adolescente , Canadá , Criança , Doença Crônica/tratamento farmacológico , Doença Crônica/reabilitação , Aconselhamento , Crianças com Deficiência/reabilitação , Feminino , Serviços de Saúde/estatística & dados numéricos , Inquéritos Epidemiológicos/métodos , Humanos , Masculino , Limitação da Mobilidade , Fatores Sexuais , Fatores Socioeconômicos
7.
Dev Med Child Neurol ; 55(8): 729-36, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23701369

RESUMO

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.


Assuntos
Deficiências do Desenvolvimento/epidemiologia , Crianças com Deficiência/classificação , Crianças com Deficiência/psicologia , Inquéritos Epidemiológicos/tendências , Adolescente , Canadá/epidemiologia , Censos , Criança , Pré-Escolar , Deficiências do Desenvolvimento/psicologia , Crianças com Deficiência/estatística & dados numéricos , Feminino , Inquéritos Epidemiológicos/estatística & dados numéricos , Humanos , Atividades de Lazer/psicologia , Masculino , Atividade Motora/fisiologia , Instituições Acadêmicas/tendências , Índice de Gravidade de Doença , Comportamento Social
8.
BMC Proc ; 16(Suppl 3): 1, 2022 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-35581655

RESUMO

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.

9.
Am J Public Health ; 101(12): 2308-16, 2011 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22021302

RESUMO

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.


Assuntos
Cuidadores , Cuidado da Criança , Doença Crônica , Nível de Saúde , Adolescente , Adulto , Canadá , Criança , Pré-Escolar , Depressão/diagnóstico , Depressão/etiologia , Família , Feminino , Humanos , Estudos Longitudinais , Masculino
10.
Res Dev Disabil ; 104: 103712, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32554267

RESUMO

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.


Assuntos
Transtornos do Neurodesenvolvimento , Comportamento Problema , Cuidadores , Criança , Família , Humanos , Inquéritos e Questionários
11.
Am J Public Health ; 99(7): 1254-62, 2009 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-19059861

RESUMO

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.


Assuntos
Cuidadores , Crianças com Deficiência , Nível de Saúde , Adulto , Canadá , Distribuição de Qui-Quadrado , Criança , Pré-Escolar , Doença Crônica , Escolaridade , Feminino , Humanos , Renda , Modelos Logísticos , Estudos Longitudinais , Masculino
12.
BMC Health Serv Res ; 9: 242, 2009 Dec 21.
Artigo em Inglês | MEDLINE | ID: mdl-20025770

RESUMO

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.


Assuntos
Doença Crônica/terapia , Continuidade da Assistência ao Paciente/normas , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Relações Profissional-Família , Adulto , Anedotas como Assunto , Canadá , Cuidadores/psicologia , Criança , Serviços de Saúde da Criança/normas , Pré-Escolar , Redes Comunitárias/estatística & dados numéricos , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades
13.
Disabil Rehabil ; 31(8): 607-18, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19360498

RESUMO

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.


Assuntos
Cuidadores/psicologia , Deficiências do Desenvolvimento/epidemiologia , Nível de Saúde , Atividades Cotidianas , Adulto , Artrite/epidemiologia , Asma/epidemiologia , Dor nas Costas/epidemiologia , Canadá/epidemiologia , Criança , Transtornos do Comportamento Infantil/epidemiologia , Pré-Escolar , Depressão/epidemiologia , Crianças com Deficiência , Relações Familiares , Feminino , Inquéritos Epidemiológicos , Humanos , Estudos Longitudinais , Masculino , Casamento , Saúde Mental , Transtornos de Enxaqueca/epidemiologia , Apoio Social
14.
Disabil Rehabil ; 31(9): 741-52, 2009.
Artigo em Inglês | MEDLINE | ID: mdl-19736648

RESUMO

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.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Transtornos do Comportamento Infantil , Deficiências do Desenvolvimento , Nível de Saúde , Adulto , Canadá , Criança , Transtornos do Comportamento Infantil/complicações , Pré-Escolar , Doença Crônica , Depressão , Deficiências do Desenvolvimento/complicações , Feminino , Humanos , Estudos Longitudinais , Masculino , Razão de Chances , Apoio Social
15.
Res Dev Disabil ; 86: 76-86, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30684833

RESUMO

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.


Assuntos
Tratamento Farmacológico/estatística & dados numéricos , Serviços de Saúde/estatística & dados numéricos , Nível de Saúde , Mães/estatística & dados numéricos , Transtornos do Neurodesenvolvimento , Adulto , Colúmbia Britânica , Estudos de Casos e Controles , Doença Crônica , Feminino , Humanos , Estudos Longitudinais , Adulto Jovem
16.
Int J Popul Data Sci ; 4(1): 584, 2019 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-32935023

RESUMO

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.

17.
Front Pediatr ; 7: 186, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31139605

RESUMO

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.

19.
BMC Pediatr ; 7: 40, 2007 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-18053253

RESUMO

BACKGROUND: Many definitions are being used to conceptualize child health problems. With survey data, commonly used indicators for identifying children with health problems have included chronic condition checklists, measures of activity limitations, elevated service use, and health utility thresholds. This study compares these different indicators in terms of the prevalence rates elicited, and in terms of how the subgroups identified differ. METHODS: Secondary data analyses used data from the National Longitudinal Survey of Children and Youth, which surveyed a nationally representative sample of Canadian children (n = 13,790). Descriptive analyses compared healthy children to those with health problems, as classified by any of the key indicators. Additional analyses examined differences between subgroups of children captured by a single indicator and those described as having health problems by multiple indicators. RESULTS: This study demonstrates that children captured by any of the indicators had poorer health than healthy children, despite the fact that over half the sample (52.2%) was characterized as having a health problem by at least one indicator. Rates of child ill health differed by indicator; 5.6% had an activity limitation, 9.2% exhibited a severe health difficulty, 31.7% reported a chronic condition, and 36.6% had elevated service use. Further, the four key indicators captured different types of children. Indicator groupings differed on child and socio-demographic factors. Compared to children identified by more than one indicator, those identified only by the severe health difficulty indicator displayed more cognitive problems (p < 0.0001), those identified only by the chronic condition checklist had a greater likelihood of reporting allergies or asthma (p < 0.0001), and those identified as having elevated service use only were more affluent (p = 0.01) and showed better overall health (p < 0.0001). Children identified by only a single indicator were less likely to have serious health problems than those identified by two or more indicators. CONCLUSION: We provide information useful to researchers when selecting indicators from survey data to identify children with health problems. Researchers and policy makers need to be aware of the impact of such definitions on prevalence rates as well as on the composition of children classified as being in poor health.


Assuntos
Proteção da Criança/estatística & dados numéricos , Indicadores Básicos de Saúde , Canadá/epidemiologia , Distribuição de Qui-Quadrado , Criança , Pré-Escolar , Doença Crônica/epidemiologia , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Masculino
20.
Chronic Dis Can ; 28(1-2): 10-9, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17953794

RESUMO

Canadian research on health services for children and youth with chronic health conditions (CHC) is limited. In a postal survey, pediatricians in British Columbia rated the quality and safety of health care services for children with chronic medical conditions (Ch-Med) lower (mean rating +/- SD on a seven-point scale: 4.86 +/- 1.02 ) than services for children with acute conditions/injuries (5.97 +/- 1.01), and lowest for children with chronic developmental, behavioral and mental health conditions (Ch-DBM; 3.06 +/- 1.17). To improve health care services for CHC, respondents especially favoured improving access to community-based services and resources and to medical specialists and specialized facilities, and the implementation of alternative models of care. Respondents indicated that physician care of children with CHC could be enhanced by extending the physician's role, better integrating medical with other aspects of care and adopting more flexible payment mechanisms. Findings suggest the need for enhancement and innovation in medical services for children with CHC, especially Ch-DBM, but also that solutions need to take account of CHC subcategory, geographic factors and differences in practitioner readiness to embrace change.


Assuntos
Atitude do Pessoal de Saúde , Serviços de Saúde da Criança/normas , Doença Crônica , Pediatria/normas , Médicos/psicologia , Qualidade da Assistência à Saúde , Análise de Variância , Colúmbia Britânica , Distribuição de Qui-Quadrado , Criança , Pré-Escolar , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Inquéritos e Questionários
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