Association between parental nativity and autism spectrum disorder among US-born non-Hispanic white and Hispanic children, 2007 National Survey of Children's Health

BackgroundLimited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether maternal and child birth country are discordant.Objective/HypothesisWe explored associations between ASD and maternal and paternal nativity in a sample of US-born non-Hispanic white (NHW, n = 37,265) and US-born Hispanic (n = 4,690) children in the 2007 National Survey of Children’s Health (NSCH).MethodsWe assessed ASD prevalence within race-ethnicity and parental nativity subgroups. Prevalence ratios (aPR), comparing each group to NHW children with 2 US-born parents, were adjusted for child age, sex, and receipt of care in a medical home. Estimates were weighted to reflect US noninstitutionalized children. Standard errors were adjusted to account for the complex sample design.ResultsIn NHW children with 2 US-born parents, ASD prevalence was 1.19%; estimates were similar for NHW children with a foreign-born mother or father. There was a striking heterogeneity between Hispanic children with 2 US-born versus 2 foreign-born parents (ASD prevalence 2.39% versus 0.31%, p = .05). Even after adjustment, PRs comparing ASD prevalence in Hispanic versus NHW children were vastly different for Hispanic subgroups, suggesting a substantially lower prevalence for Hispanic children with both parents foreign-born (aPR 0.2, 95% confidence interval 0.1-0.5) and a higher prevalence for Hispanic children with both parents US-born (aPR 2.0 [0.8-4.6]).ConclusionsPrevious studies comparing ASD prevalence between NHW and Hispanic children based on a composite Hispanic grouping without consideration of parental nativity likely missed important differences between these racial-ethnic groups. Continuing efforts toward improving early identification in Hispanic children are needed.     

High Parenting Aggravation Among US Immigrant Families

Objectives. We examined the association between the joint effects of children’s immigrant family type and race/ethnicity on parenting aggravation.Methods. We analyzed data on a nationally representative sample of 101 032 children aged birth through 17 years from the 2003 National Survey of Children’s Health.Results. Analysis of the Aggravation in Parenting Scale showed that 26% of foreign-born parents with foreign-born children were highly aggravated, followed by 22% of foreign-born parents with US-born children and 11% of US-born parents. Multivariable analyses indicated that all minority parents experienced high parenting aggravation compared with non-Hispanic White US-born parents; the odds of reporting parenting aggravation were 5 times higher for Hispanic foreign-born parents. All foreign-born parents, regardless of race/ethnicity, reported significantly elevated parenting aggravation. Parents of adolescents, children with special health care needs, and nontraditional and lower-income households were also more likely to report high parenting aggravation.Conclusions. Our findings clearly document significantly elevated levels of parenting aggravation among immigrant and minority families. Public health programs and clinicians should target referrals and interventions for these families to avoid potential health problems for both children and their families.Between 2000 and 2005, the United States saw the highest 5-year period of immigration in its history.1 Census data indicate that 22% of children, or 16 million, lived with a foreign-born householder in 2007, an increase from 12.1% from 1990, although only 4% of all US children were themselves foreign born.2 In 2005, an estimated 3.1 million children lived in “mixed-status” families that included both citizen and noncitizen members, making the children’s health care access and eligibility for public benefits more complex.3 Five out of 6 undocumented families with children are in this category. Children living with foreign-born householders tend to be younger, and are more likely to live in poverty than those living with US-born householders.4Regardless of nativity, children in immigrant families are a special population since their well-being is very much influenced by the immigrant attributes of their parents, including those related to language and culture, health care–seeking behavior, and public program access and eligibility.5–8 The notion of “immigrant family type” is therefore important in the study of family dynamics, representing different challenges faced by these families. Within the last decade, immigrants have also dispersed to many states that previously did not have a large foreign-born population and thus may lack the infrastructure and resources to address the special needs of such populations.9Among the many hardships faced by immigrant families, those related to economic conditions, health insurance, acculturation, access of public benefit programs, and English proficiency are likely the most challenging.10,11 These may all contribute to stress and aggravation in the family lives of immigrants. Raising children in a new country can be difficult. Immigrant parents are frequently limited in their ability to act as advocates for their children in the school and health care settings.12 On the other hand, the evidence of resilience and the academic and socioeconomic success of children from immigrant households has probably masked the hardships and demanding adjustments experienced by immigrant families.13–15Despite studies showing lower mortality and morbidity risks among immigrants compared with US-born infants, children, and adults,16–22 other measures of health and well-being, such as parent-reported health status, participation in physical activities, access to preventive services, and other psychosocial characteristics have been less favorable.23–26 The American Academy of Pediatrics recently updated its policy statement describing the unique and complex medical and psychosocial risks faced by immigrant children and recommended that children not be denied needed services on the basis of immigration status.27 Furthermore, the intended and unintended effects of the 1996 Personal Responsibility and Work Opportunity Reconciliation Act8,28 have posed numerous challenges to health care access and the family lives of recent immigrants.29,30Parenting aggravation is a measurement of stress experienced by parents associated with caring for children. High parenting aggravation has previously been associated with maternal and paternal depression, autism, learning disabilities, child obesity, maternal chronic illness, paternal alcoholism, single parenthood, family transitions, and Black race.31–39 Parenting aggravation has never been explored in immigrant families and racial/ethnic groups.The 2003 National Survey of Children’s Health (NSCH) is the first national survey that provides information on parenting aggravation on a sufficiently large sample of children from different racial/ethnic groups and immigrant family types to permit such analysis.40 Using data from the 2003 NSCH, we aimed to determine the prevalence of parenting aggravation in different immigrant family types and racial/ethnic groups in the United States, and to examine the joint effects of race/ethnicity and immigrant family type on parenting aggravation while controlling for confounding variables. To our knowledge, our study is the first that characterizes parenting aggravation in immigrant families using a large nationally representative probability sample.     

Health and educational status of children raised by a caregiver with a disability

Background

Research on children raised by adults with disability is limited. Our goal was to provide a profile of the health and educational status of children raised by a caregiver with disability.

Methods

In 2007-2008, 4571 adults completed the North Carolina Behavior Risk Factor Surveillance System (BRFSS) and Child Health Assessment Monitoring Program (CHAMP) surveys. Analyses using weighted data provided population-based health/educational status comparisons of children (0 to 17 years old) raised by caregivers with and without disability.

Results

Twenty-three percent of caregivers reported disability. Rates of insurance coverage and preventive care did not differ by caregiver disability status, although children of caregivers with disability were more likely to have publicly funded insurance. The majority of children of caregivers with disability were in excellent/very good health (70%), healthy weight (58%), and making above-average grades (74%). Nonetheless, children raised by caregivers with disability appear to be at disproportionately higher risk for overall poorer outcomes. Children raised by caregivers with disability were more likely to be in fair/poor health (adjusted odds ratio [aOR] 2.2; 95% confidence interval [CI] 1.3 to 3.6), overweight/obese (aOR = 1.5, 95% CI 1.1-2.0), need medical/educational services (aOR = 2.0, 95% CI 1.5-2.6), have lower grades (aOR = 1.9, 95% CI 1.4-2.5), and higher rates of school absenteeism (aOR = 2.4, 95% CI 1.8-3.4), compared to children of caregivers without disability.

Conclusion

Children raised by a caregiver with disability show good overall wellness; however, caregiver disability status was found to be associated with an increased risk for poor child health and educational outcomes. Future research is needed to clarify the causes of these disparities and inform policies to alleviate them.     

A comparison of children and adolescent’s self-report and parental report of the PedsQL among those with and without autism spectrum disorder

Purpose

Children and adolescents with autism spectrum disorders (ASD) are understood to experience a reduced quality of life compared to typically developing (TD) peers. The evidence to support this has largely been derived from proxy reports, in turn which have been evaluated by Cronbach’s alpha and interrater reliability, neither of which demonstrate unidimensionality of scales, or that raters use the instruments consistently. To redress this, we undertook an evaluation of the Pediatric Quality of Life Inventory? (PedsQL), a widely used measure of children’s quality of life. Three questions were explored: (1). do TD children or adolescents and their parents use the PedsQL differently; (2). do children or adolescents with ASD and their parents use the PedsQL differently, and (3). do children or adolescents with ASD and TD children or adolescents use the PedsQL differently? By using the scales differently, we mean whether respondents endorse items differently contingent by group.

Methods

We recruited 229 children and adolescents with ASD who had an IQ greater than 70, and one of their parents, as well as 74 TD children or adolescents and one of their parents. Children and adolescents with ASD (aged 6–20 years) were recruited from special primary and secondary schools in the Amsterdam region. Children and adolescents were included based on an independent clinical diagnosis established prior to recruitment according to DSM-IV-TR criteria by psychiatrists and/or psychologists, qualified to make the diagnosis. Children or adolescents and parents completed their respective version of the PedsQL.

Results

Data were analysed for unidimensionality and for differential item functioning (DIF) across respondent for TD children and adolescents and their parents, for children and adolescents with ASD and their parents, and then last, children and adolescents with ASD were compared to TD children and adolescents for DIF. Following recoding the data, the unidimensional model was found to fit all groups. We found that parents of and TD children and adolescents do not use the PedsQL differently (\(\chi_{(46)}^{2}\) = 64.86, p = ns), consistent with the literature that children and adolescents with ASD and TD children and adolescents use the PedsQL similarly (\(\chi_{(69)}^{2}\) = 92.22, p = ns), though their score levels may differ. However, children and adolescents with ASD and their parents respond to the PedsQL differently (\(\chi_{(115)}^{2}\) = 190.22, p < 0.001) and contingently upon features of the child or adolescent.

Conclusions

We suggest this is due to children or adolescents with ASD being less forthcoming with their parents about their lives. This, however, will require additional research to confirm. Consequently, we conclude that parents of high-functioning children with ASD are unable to act as reliable proxies for their children with ASD.

     

Confidentiality With Adolescents in the Medical Setting: What Do Parents Think?

Purpose

When confidential health care is provided to adolescents they are more likely to seek care, disclose sensitive information, and return for future visits. Guidelines for health professionals recommend seeing young people alone to facilitate confidential care. We sought to document parental views regarding confidentiality with adolescents, aiming to identify topics that parents believe they should be informed about despite an assurance of confidentiality between their child and the doctor. We also aimed to document harms and benefits that parents associate with adolescents seeing doctors alone.

Methods

A sample of 86 parents attending an adolescent medicine clinic with their son/daughter was surveyed using a brief, anonymous questionnaire.

Results

Parents identified several benefits associated with confidential care, yet also believed they should be informed about a wide range of topics, even if their children did not want them to know. Parents' primary concern about confidentiality was a fear of not being informed about important information.

Conclusions

Parental views concerning confidentiality are complex and conflicting and differ from current guidance provided to health professionals. Ensuring that parents accurately understand the limits to confidentiality and support the notion of confidential care for their children is a challenging yet vital task for health professionals.     

Combining scores from different patient reported outcome measures in meta-analyses: when is it justified?

Background

The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics.

Methods

The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ).

Results

The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child.

Conclusion

Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.     

Delayed and Forgone Care for Children with Special Health Care Needs in New York State

Objective: To identify characteristics associated with delayed/forgone care for children with special health care needs (CSHCN) in New York State (NYS) as reported by their parents. Methods: Data come from NYS participants in the 2000–2002 National Survey of Children with Special Health Care Needs. Data were analyzed using weighted bivariate and multivariate regression models. The dependent variable was report of delayed/forgone routine health care. Independent variables included illness characteristics, potential and actual access to care, and provider care characteristics. Results: In NYS, 8.4% reported delayed/forgone health care for their child. Parents of children with delayed/forgone care were more likely to report that their child was uninsured (adjusted odds ratio [aOR] 3.8, 95% confidence interval[CI] 1.3–11.8), had experienced interrupted health insurance (aOR 3.9, 95% CI 1.5–9.7), or their child’s insurance was not adequate for CSHCN (aOR 3.6, 95% CI 1.4–9.1). Further, these parents were more likely to report that providers never spend adequate time (aOR 6.3, 95% CI 1.2–34.4), provide sufficient information (aOR 8.0, 95% CI 2.5–25.0), act as partners in care (aOR 6.7, 95% CI 2.3–19.7), or display cultural sensitivity (aOR 5.4, 95% CI 1.2–24.3). Conclusions: An estimated 40,771 NYS CSHCN experience delayed/forgone routine health care. Their families report two noteworthy barriers: inadequate or discontinuous insurance coverage and poor communication with health-care providers. Access to care for CSHCN can be improved by increasing consistent comprehensive insurance coverage and increasing sensitivity in relationships between health care providers and families of CSHCN.     

Advanced Maternal Age and Maternal Education Disparity in Children with Autism Spectrum Disorder

Objective Previous studies have shown inconsistent results with regard to the association between advanced parental age and autism spectrum disorder (ASD). The sociodemographic status of parents has been found to be associated with children with ASD, however. Therefore, a pathway analysis was undertaken of the roles of maternal age and education in ASD diagnosis and community screening, in a national birth cohort database, using a propensity score matching (PSM) method. Method The 6- and 66-month Taiwan Birth Cohort Study dataset was used (N?=?20,095). The PSM exact matching method was used to select 1700 families (ratio of 1:4 between ASD diagnosis and control) from the Taiwan Birth Cohort Study dataset. Results (1) The results from the complete dataset and the PSM exact matching dataset both show that the risk of a child being diagnosed with ASD was increased by the mother being over 40 years old. (2) Although more children of mothers with lower-than-average education were positive on screening, more children of mothers with higher-than-average education were also diagnosed with ASD. Conclusions for Practice Advanced maternal age had a higher association with the diagnosis of ASD, and maternal educational disparity was found between ASD clinical diagnosis and community screening. Community and primary medical care services should pay more attention to children of parents with lower education during ASD screening to prevent delayed diagnosis.     

Influences on Parents’ Child Care Choices: A Comparative Analysis of Preschool and Long Day Care Users

Background

This paper investigates Australian parents’ child care decision-making, including the motivational and influential factors that they attribute to their choice. Research demonstrates that child care decision making is multifaceted, involving a combination of child-related, personal, familial and contextual considerations. Existing research has tended to compare centre-based child care users with those using family-based options, and has not examined differences in the decision-making of parents who using different centre-based options.

Objective

This study compared the characteristics and child care choices of parents using long day care (LDC) with those using preschool services to determine (1) whether they differ demographically and (2) if their reported child care decision-making motivations and influences diverge.

Method

Participants were 1418 parents who completed a nationally-distributed survey in which they provided demographic information, specified their reasons for choosing to use child care, and rated the importance of factors that influenced their child care choice.

Results

LDC parents had, on average, younger children, worked longer hours and resided in areas with lower socioeconomic resources than preschool parents. When compared with preschool parents, those using LDC were more likely to nominate pragmatic factors as influencing their child care decision making. External pressures, mainly related to educational outcomes, were more salient for preschool than LDC parents. However, both groups of parents similarly rated child-centred factors as the most important overall influence.

Conclusion

Our findings add complexity to current understandings of parents’ child care decision making by showing that parents should not be treated as a homogenous group by policy makers, providers, and researchers.

     

Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors

Purpose

Health-related quality of life (HRQOL) is not only a degree of health but also reflects patient perceptions and expectations of health. For children with brain tumors, better understanding of HRQOL requires the use of complementary reports from parents and interviewer-administered reports for children. Here, we aimed to test whether or not the trait anxiety of children and the psychological distress of their parents influence children’s and parents’ responses to HRQOL questionnaires, and whether or not the report-administration method for children influences children’s responses to HRQOL questionnaires.

Methods

One hundred and thirty-four children aged 5–18 with brain tumors and one of their parents completed the Pediatric Quality of Life Inventory^? (PedsQL^?) Brain Tumor Module questionnaires. In addition, the children also completed the State-Trait Anxiety Inventory for Children (STAIC), and the parents also completed the Kessler-10 (K10) and health and sociodemographic characteristics questionnaires. The child questionnaires were administered either by the child (self-administered) or an interviewer. Rater-dependent perceptions about HRQOL were derived from the subscales scores of the PedsQL^? Brain Tumor Module using structural equation modeling based on a multitrait-multimethod model. The STAIC trait-anxiety score, K10 score, report-administration method, and other health and sociodemographic factors related to each child’s or parent’s perceptions were identified through multiple linear regression analyses of the questionnaire responses. We used a path analysis to estimate the change in a PedsQL^? child-reported score that occurs when interviewer-administration changes the child’s perception about HRQOL.

Results

Surveys for 89 children were self-administered while those for 45 were interviewer-administered. The perceptions of the children and parents were calculated by fitting data to the model (chi-squared P = 0.087, normed fit index = 0.932, comparative fit index = 0.978, standardized root mean squared residual = 0.053, and root mean square error of approximation = 0.054). The children’s perception of HRQOL was affected by their STAIC trait-anxiety score (b = ?0.43, 95% CI [?0.60, ?0.25]). The parent’s perception was affected by their child’s treatment status (b = 0.26, 95% CI [0.09, 0.43]), the parent’s K10 score (b = ?0.21, 95% CI [?0.37, ?0.04]), and by education level (b = 0.17, 95% CI [0.00, 0.34]). The change in the child-reported PedsQL^? score in relation to the method of administration ranged from ?1.1 (95% CI: ?3.5, 1.3) on the procedural anxiety subscale to ?2.5 (95% CI: ?7.6, 2.6) on the movement and balance subscale.

Conclusion

Child-reporting of HRQOL is little influenced by the method of administration. Children’s perception about HRQOL tended to be influenced by their trait anxiety, while parents’ perception was influenced by their psychological distress, academic background, and their child’s treatment status.     

Determinant of factors associated with child health outcomes and service utilization in Ghana: multiple indicator cluster survey conducted in 2011

Background

The effects of National Health Insurance Scheme in Ghana and its impact on child health outcome and service utilization cannot be underestimated. Despite the tremendous improvement in child health care in Ghana, there are still some challenges in relation to how National health insurance membership, socioeconomic status and other demographic factors impacts on child health outcomes. The study seeks to determine the association between NHIS membership, socio-economic status, geographic location and other relevant background factors, on child health service utilization and outcomes.

Methods

Secondary data from the Multiple Indicator Cluster Survey conducted in 2011 was used. Multivariate analysis based on Binary Logistic Regression Models and Multiple linear regression techniques was applied to determine factors associated with child health outcomes and service utilization. Collection of best models was based on Hosmer-Lemeshow Goodness-Of-Fit as one criterion of fit and the Akaike Information Criterion.

Results

Controlling for confounding effect of socioeconomic status, age of the child, mothers education level and geographic location, the odds of a child developing anemia for children with National Health Insurance Scheme Membership is 65.2% [95% CI: 52.9-80.2] times less than children without National Health Insurance Scheme Membership. The odds of being fully immunized against common childhood illnesses for children with NHIS membership is 2.3[95% CI: 1.4-3.7] times higher than children without National Health Insurance Scheme Membership. There was no association between National Health Insurance Scheme Membership and stunted growth in children.

Conclusions

National Health Insurance Scheme Membership was found to be related to child health service utilization (full immunization) of children under five a child’s anemia status. Children with NHIS are more likely to be fully immunized against common childhood diseases and are less likely to develop anemia. Stunted growth of children was not associated with National Health Insurance Scheme Membership. Health Education on the registration and the use of the National Health Insurance should be made a national priority to enable the Ministry of Health achieve routine Immunization targets and to reduce to the bearers minimum prevalence of anemia.

     

Use of online health information to manage children’s health care: a prospective study investigating parental decisions

Background

The use of the internet to access information is rapidly increasing; however, the quality of health information provided on various online sites is questionable. We aimed to examine the underlying factors that guide parents’ decisions to use online information to manage their child’s health care, a behaviour which has not yet been explored systematically.

Methods

Parents (N?=?391) completed a questionnaire assessing the standard theory of planned behaviour (TPB) measures of attitude, subjective norm, perceived behavioural control (PBC), and intention as well as the underlying TPB belief-based items (i.e., behavioural, normative, and control beliefs) in addition to a measure of perceived risk and demographic variables. Two months later, consenting parents completed a follow-up telephone questionnaire which assessed the decisions they had made regarding their use of online information to manage their child’s health care during the previous 2 months.

Results

We found support for the TPB constructs of attitude, subjective norm, and PBC as well as the additional construct of perceived risk in predicting parents’ intentions to use online information to manage their child’s health care, with further support found for intentions, but not PBC, in predicting parents’ behaviour. The results of the TPB belief-based analyses also revealed important information about the critical beliefs that guide parents’ decisions to engage in this child health management behaviour.

Conclusions

This theory-based investigation to understand parents’ motivations and online information-seeking behaviour is key to developing recommendations and policies to guide more appropriate help-seeking actions among parents.

     

The economic benefits of reducing physical inactivity: an Australian example

Background

Time spent watching television affects multiple aspects of child and adolescent health. Although a diverse range of factors have been found to be associated with young people's television viewing, parents and the home environment are particularly influential. However, little is known about whether parents, particularly those who are concerned about their child's television viewing habits, translate their concern into action by providing supportive home environments (e.g. rules restricting screen-time behaviours, limited access to screen-based media). The aim of this study was to examine associations between parental concerns for child television viewing and child television viewing and the home sedentary environment.

Methods

Parents of children aged 5-6 years ('younger' children, n = 430) and 10-12 years ('older children', n = 640) reported usual duration of their child's television (TV) viewing, their concerns regarding the amount of time their child spends watching TV, and on aspects of the home environment. Regression analyses examined associations between parental concern and child TV viewing, and between parental concern and aspects of the home environment. Analyses were stratified by age group.

Results

Children of concerned parents watched more TV than those whose parents were not concerned (B = 9.63, 95% CI = 1.58-17.68, p = 0.02 and B = 15.82, 95% CI = 8.85-22.80, p < 0.01, for younger and older children respectively). Parental concern was positively associated with younger children eating dinner in front of the television, and with parental restriction of sedentary behaviours and offering sedentary activities (i.e. TV viewing or computer use) as a reward for good behaviour among older and young children. Furthermore, parents of older children who were concerned had fewer televisions in the home and a lower count of sedentary equipment in the home.

Conclusions

Children of concerned parents watched more TV than those whose parents who were not concerned. Parents appear to recognise excessive television viewing in their children and these parents appear to engage in conflicting parental approaches despite these concerns. Interventions targeting concerned parents may be an innovative way of reaching children most in need of strategies to reduce their television viewing and harnessing this parental concern may offer considerable opportunity to change the family and home environment.     

The involvement of parents in the healthcare provided to hospitalzed children

Objective

to analyze the answers of parents and health care professionals concerning the involvement of parents in the care provided to hospitalized children.

Method

exploratory study based on the conceptual framework of pediatric healthcare with qualitative data analysis.

Results

three dimensions of involvement were highlighted: daily care provided to children, opinions concerning the involvement of parents, and continuity of care with aspects related to the presence and participation of parents, benefits to the child and family, information needs, responsibility, right to healthcare, hospital infrastructure, care delivery, communication between the parents and health services, shared learning, and follow-up after discharge.

Conclusion

the involvement of parents in the care provided to their children has many meanings for parents, nurses and doctors. Specific strategies need to be developed with and for parents in order to mobilize parental competencies and contribute to increasing their autonomy and decision-making concerning the care provided to children.     

The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy

Purpose

To investigate the level of agreement between child self-reports and parent proxy-reports of the health-related quality of life (HRQoL) in boys with Duchenne muscular dystrophy (DMD) using both classical test theory (CTT) and Rasch analysis.

Methods

A total of 63 boys with DMD and their parents completed the pediatric quality of life inventory version 4.0 child self-report and parent proxy-report of HRQoL, respectively. The data were analyzed using both the CTT (scale-score level) and Rasch analysis (item-level).

Results

The intraclass correlation coefficient (ICC, scale-score level) between children and parents showed good to moderate agreement, although parents consistently underestimated their child HRQoL. In Rasch analysis (item-level), 1 out of 8 items was significantly different between children and parents in the physical health scale. Also, 3 out of 15 items were significantly different between those two groups in the psychosocial health scale.

Conclusions

By applying both scale-score and item-level analyses, our study seeks to broaden the understanding of the discrepancy of the ratings between child self-reports and parent proxy-reports. The findings could provide further information about the decision-making process when selecting therapy and care programs.     

Shared Decision Making in the Care of Children with Developmental and Behavioral Disorders

Objective Shared decision making (SDM) is most needed when there are multiple treatment options and no “right” choice. As with quality and experience of care, frequency of SDM may vary by health condition. The objectives of this study were (1) to compare parent report of SDM between a physical and a behavioral health condition and; (2) to compare parent report of SDM between two different behavioral health conditions. Methods Data on children age 3–17 years with asthma, attention deficit/hyperactivity disorder (ADHD), and/or autism spectrum disorder (ASD) were drawn from the 2009/10 National Survey of Children with Special Health Care Needs. Weighted logistic regression was used to compare a parent-reported, composite measure of SDM. Analyses controlled for sociodemographic factors that may influence experience of SDM. Results Compared to parents of children with asthma, parents of children with ADHD were significantly less likely to report experiencing consistent SDM (AOR 0.73). Compared to parents of children with ADHD, those of children with ASD had significantly lower odds of experiencing consistent SDM (AOR 0.59). Those with both ADHD and ASD had the same odds as those with ASD alone of experiencing consistent SDM. Conclusion Use of SDM is particularly limited in developmental and behavioral conditions, such as ADHD and ASD. These data suggest that challenges to implementing SDM may include disease type, complexity, and use of specialty care. Research to identify specific barriers and facilitators of SDM is needed to inform interventions that will promote SDM in developmental and behavioral conditions.     

Homecare protective and risk factors for early childhood caries in Japan

Background

Early childhood caries (ECC) affects children across Japan and throughout the world. Thus, it is important to identify dietary and dental care habits that either promote oral health or cause ECC. The objective of this study was to identify protective and risk factors associated with ECC in Japan.

Methods

In a typical rural Japanese community, we selected children born between 2004 and 2008 who had received checkups at their community health center including oral examinations conducted by dentists. We obtained data from children’s records and from a questionnaire filled out by parents. We enrolled only children who at their checkup for 18-month-olds had no caries, and we obtained data about them at their checkup for 3-year-olds. We classified children as either having caries (treated or untreated) or being caries-free. We conducted bivariate analyses using data on child/family demographic characteristics, child’s dietary habits, and child/parental oral health habits. We also conducted logistic regression analysis to control for variables and identify predictors of the presence/absence of caries.

Results

Five hundred sixty six children (278 boys, 288 girls) were enrolled and followed. After 2 years, 173 children (30.6%) presented with caries. Logistic regression analysis predicting caries at follow-up identified the interaction term “bottlefed overnight and brushed irregularly” at 18 months of age as a highly significant predictor of developing caries—adjusted odds ratio (AOR) of 14.27, 95% confidence interval (CI) 1.02–199.71. Two variables measured at follow-up were also significant predictors: having low levels of dental plaque (AOR 2.41, 95% CI 1.34–4.35) and having a mother who had untreated caries (AOR 1.84, 95% CI 1.09–3.12).

Conclusion

Public health efforts should encourage parents to eliminate bottle feeding overnight and promote brushing twice daily as children’s teeth begin to erupt. Greater efforts should be made to teach parents and daytime caregivers how to brush effectively to remove all plaque. Health professionals should pay close attention to mothers’ oral health status. Mothers with caries should receive prompt treatment and be assisted in developing better dietary and oral health habits that will benefit themselves and their children. Policies and programs should focus more on family oral health rather than just child oral health.

     

孤独症谱系障碍儿童遭受家长躯体情感暴力现状及相关因素

目的 了解孤独症谱系障碍(ASD)儿童遭受家长躯体情感暴力现状及其相关因素,为制定儿童暴力伤害的干预方案提供科学依据。方法 2021年3—10月选择唐山市3所特教机构的221名ASD儿童,同时方便选取市区和农村各2所幼儿园的395名非ASD儿童进行线上及现场问卷调查。使用自行设计的暴力行为调查表、儿童孤独症评定量表(CARS)和9项患者健康问卷抑郁量表(PHQ-9)收集调查对象遭受暴力、孤独症严重程度、养育人抑郁状况及其他影响因素。采用χ²检验、Fisher精确检验法、Logistic回归分析暴力的相关因素。结果 最近1年内,81.9%的ASD儿童和72.9%的非ASD儿童遭受过暴力,ASD儿童躯体、情感暴力报告率分别为74.2%和73.8%,非ASD儿童分别为58.7%和65.8%,两组儿童躯体、情感及总暴力报告率差异均有统计学意义(P值均<0.05)。多因素Logistic回归分析结果显示,男童(OR=1.70,95%CI=1.12～2.60)、家庭人均年收入<1万元(OR=2.43,95%CI=1.45～4.08)、养育人抑郁程度重(OR