Parent-reported Data Research Articles

Hand Function in Young Children with Cerebral Palsy: Current Practice and Parent-Reported Benefits

ABSTRACTAims: To (1) describe characteristics of current interventions to improve hand function in young children with Cerebral Palsy (CP), and explore factors associated with (2) increased likelihood of hand and ADL training and (3) child benefits of training. Methods: A cross-sectional design was used with parent-reported data and data from the Norwegian CP Follow-up Program (CPOP). A total of 102 children (53% of the cohort of newly recruited children in the CPOP, mean age: 30.3 months, SD: 12.1) were included. Hand function was classified according to the Mini-Manual Ability Classification System (Mini-MACS). Data were analyzed with descriptive statistics, cross-tables and direct multiple logistic regressions. Results: The majority of the children performed training of hand skills and ADL. Parents reported high amounts of training, and training was commonly integrated in everyday activities. Both parents (OR = 5.6, p < .011) and OTs (OR = 6.2, p < .002) reported more hand training for children at Mini-MACS levels II-III compared to level I. Parents reported larger child benefits when training was organized as a combination of training sessions and practice within everyday activities (OR = 7.090, p = .011). Conclusions: Parents reported that the children's everyday activities were utilized as opportunities for training, hence describing the intensity of therapy merely by counting minutes or number of sessions seems insufficient.

Parent report data on input and experience reliably predict bilingual development and this is not trivial

Carroll (Carroll) takes issue with the use of parent report to obtain quantity of language exposure measures in research on bilingual development. When discussing parent questionnaires, Carroll writes “Temporal units are crude measures of exposure and they tell us nothing about input”. While I agree that temporal units do not tell us much about the fine-grained details of the input within the temporal units, importantly, parent-report-based measures of input quantity have predicted variation in bilingual development of phonology, vocabulary and morphosyntax. These are robust and reliable findings across numerous studies, and yet, Carroll skates over them as if they did not matter, or dismisses them as trivial. Furthermore, Carroll seems to lead readers to believe that only coarse-grained, language-use temporal units have been obtained through this method; on the contrary, researchers have obtained fine-grained input quality details via parent report that also predict bilingual children's development. Finally, in some circumstances, parent report data is the only feasible method for obtaining language exposure information.

Health Care, Family, and Community Factors Associated with Mental, Behavioral, and Developmental Disorders in Early Childhood - United States, 2011-2012.

Sociodemographic, health care, family, and community attributes have been associated with increased risk for mental, behavioral, and developmental disorders (MBDDs) in children (1,2). For example, poverty has been shown to have adverse effects on cognitive, socio-emotional, and physical development (1). A safe place to play is needed for gross motor development, and accessible health care is needed for preventive and illness health care (3). Positive parenting and quality preschool interventions have been shown to be associated with prosocial skills, better educational outcomes, and fewer health risk behaviors over time (2). Protective factors for MBDDs are often shared (4) and conditions often co-occur; therefore, CDC considered MBDDs together to facilitate the identification of factors that could inform collaborative, multidisciplinary prevention strategies. To identify specific factors associated with MBDDs among U.S. children aged 2-8 years, parent-reported data from the most recent (2011-2012) National Survey of Children's Health (NSCH) were analyzed. Factors associated with having any MBDD included inadequate insurance, lacking a medical home, fair or poor parental mental health, difficulties getting by on the family's income, employment difficulties because of child care issues, living in a neighborhood lacking support, living in a neighborhood lacking amenities (e.g., sidewalks, park, recreation center, and library), and living in a neighborhood in poor condition. In a multivariate analysis, fair or poor parental mental health and lacking a medical home were significantly associated with having an MBDD. There was significant variation in the prevalence of these and the other factors by state, suggesting that programs and policies might use collaborative efforts to focus on specific factors. Addressing identified factors might prevent the onset of MBDDs and improve outcomes among children who have one or more of these disorders.

Influence of Parenting Behavior on Psychosocial Adjustment in Early Adolescence: Mediated by Anger Regulation and Moderated by Gender

AbstractEmotion regulation (ER)—one of the most important developmental tasks in early adolescence—has been proposed to mediate the relation between parenting and adolescents’ psychosocial adjustment. The aim of this study was to examine the influence of parental psychological control and autonomy support on adolescents’ problem and prosocial behavior (Strengths and Difficulties Questionnaire), as well as to examine the mediating role of adolescents’ anger regulation and the moderating effect of gender. We collected three‐year longitudinal questionnaire data from N = 923 parents and their (at first assessment) 9‐ to 13‐year‐old children. Path‐analysis results mainly support the mediating role of adolescents’ adaptive and maladaptive anger regulation and suggest parental autonomy support to be beneficial for regulatory abilities and psychosocial adjustment, whereas the opposite was found for psychological control. Gender differences were found for parent report data, but not for adolescent report data. Practical and theoretical implications are discussed.

Do early noun and verb production predict later verb and noun production? Theoretical implications.

Many studies have addressed the question of the relative dominance of nouns over verbs in the productive vocabularies of children in the second year of life. Surprisingly, cross-class (noun-to-verb and verb-to-noun) relations between these two lexical categories have seldom been investigated. The present longitudinal study employed observational and parent-report data obtained from thirty mother-child dyads at 1;4, 1;8, and 2;0 to examine this issue. Both the Natural Partitions/Relational Relativity (NP/RR) hypothesis and the Emergentist Coalition Model (ECM) predict that having an initial repertoire of common nouns should facilitate the acquisition of novel verbs, whereas only the ECM suggests that children exploit the syntactic and semantic constraints of known verbs to infer the meaning of novel nouns. In line with the ECM, hierarchical regression analyses indicated that the percentages of nouns produced by children at 1;4 predicted later verbs at 1;8, whereas the percentages of verbs produced at 1;8 predicted later nouns at 2;0.

Validating the Rett Syndrome Gross Motor Scale.

Rett syndrome is a pervasive neurodevelopmental disorder associated with a pathogenic mutation on the MECP2 gene. Impaired movement is a fundamental component and the Rett Syndrome Gross Motor Scale was developed to measure gross motor abilities in this population. The current study investigated the validity and reliability of the Rett Syndrome Gross Motor Scale. Video data showing gross motor abilities supplemented with parent report data was collected for 255 girls and women registered with the Australian Rett Syndrome Database, and the factor structure and relationships between motor scores, age and genotype were investigated. Clinical assessment scores for 38 girls and women with Rett syndrome who attended the Danish Center for Rett Syndrome were used to assess consistency of measurement. Principal components analysis enabled the calculation of three factor scores: Sitting, Standing and Walking, and Challenge. Motor scores were poorer with increasing age and those with the p.Arg133Cys, p.Arg294* or p.Arg306Cys mutation achieved higher scores than those with a large deletion. The repeatability of clinical assessment was excellent (intraclass correlation coefficient for total score 0.99, 95% CI 0.93–0.98). The standard error of measurement for the total score was 2 points and we would be 95% confident that a change 4 points in the 45-point scale would be greater than within-subject measurement error. The Rett Syndrome Gross Motor Scale could be an appropriate measure of gross motor skills in clinical practice and clinical trials.

Validation of the modified Parenting Strategies for Eating and Physical Activity Scale-Diet (PEAS-Diet) in Latino children

Research shows that Latino parenting practices influence children's dietary and weight outcomes. Most studies use parent-reported data, however data from children may provide additional insight into how parents influence their children's diet and weight outcomes. The Parenting Strategies for Eating and Activity Scale (PEAS) has been validated in Latino adults, but not in children. This study evaluated the factor structure and concurrent and predictive validity of a modified version of the PEAS (PEAS-Diet) among Latino children. Data were collected from 361 children ages 7–13 from Imperial County, California, enrolled in a randomized controlled trial to promote healthy eating. The PEAS-Diet included 25 candidate items targeting six parenting practices pertaining to children's eating behaviors: (a) monitoring; (b) disciplining; (c) control; (d) permissiveness; (e) reinforcing; and (f) limit-setting. Children were on average ten years old (±2), 50% boys, 93% self-identified as Latino, 81% were US-born, and 55% completed English versus Spanish-language interviews. Using varimax rotation on baseline data with the total sample, six items were removed due to factor loadings <.40 and/or cross-loading (>.32 on more than one component). Parallel analysis and interpretability suggested a 5-factor solution explaining 59.46% of the variance. The subscale “limit-setting” was removed from the scale. The final scale consisted of 19 items and 5 subscales. Internal consistency of the subscales ranged from α = .63-.82. Confirmatory factor analyses provided additional evidence for the 5-factor scale using data collected 4 and 6 months post-baseline among the control group (n = 164, n = 161, respectively). Concurrent validity with dietary intake was established for monitoring, control, permissiveness, and reinforcing subscales in the expected directions. Predictive validity was not established. Results indicated that with the reported changes, the interview-administered PEAS-Diet is valid among Latino children aged 7–13 years.

Parental Awareness of Sexual Experience in Adolescent Boys With Autism Spectrum Disorder.

Parent report and adolescent self-report data on lifetime sexual experience in adolescents with ASD were compared in 43 parent-adolescent dyads. Parents tended to underestimate the lifetime sexual experience of their sons, particularly solo sexual experiences such as masturbation and experience with orgasm. Parental underestimation and unawareness of adolescents’ sexual experience may influence communication and education about sex and sexuality in families. These findings have implications for the interpretation of earlier research, based on parent and caregiver reports, on sexuality in adolescents with ASD.

Infections and risk of celiac disease in childhood: a prospective nationwide cohort study.

Studies on early life infections and risk of later celiac disease (CD) are inconsistent but have mostly been limited to retrospective designs, inpatient data, or insufficient statistical power. We aimed to test whether early life infections are associated with increased risk of later CD using prospective population-based data. This study, based on the Norwegian Mother and Child Cohort Study, includes prospective, repeated assessments of parent-reported infectious disease data up to 18 months of age for 72,921 children born between 2000 and 2009. CD was identified through parental questionnaires and the Norwegian Patient Registry. Logistic regression was used to estimate odds ratios adjusted for child's age and sex (aOR). During a median follow-up period of 8.5 years (range, 4.5-14.5), 581 children (0.8%) were diagnosed with CD. Children with ≥10 infections (≥fourth quartile) up to age 18 months had a significantly higher risk of later CD, as compared with children with ≤4 infections (≤first quartile; aOR=1.32; 95% confidence interval (CI)=1.06-1.65; per increase in infectious episodes, aOR=1.03; 95% CI=1.02-1.05). The aORs per increase in specific types of infections were as follows: upper respiratory tract infections: 1.03 (95% CI=1.02-1.05); lower respiratory tract infections: 1.12 (95% CI=1.01-1.23); and gastroenteritis: 1.05 (95% CI=0.99-1.11). Additional adjustments for maternal CD, education level, smoking, birth weight, prematurity, infant feeding practices, birth season, and antibiotic treatment yielded largely unchanged results. This is the first large-scale population-based cohort study of this association. Our results are in line with immunological data suggesting that early life infections may have a role in CD development. However, non-causal explanations for this association due to surveillance bias and reverse causation cannot be excluded.

Designing and recruiting to UK autism spectrum disorder research databases: do they include representative children with valid ASD diagnoses?

Objectives(1) Describe how the Autism Spectrum Database-UK (ASD-UK) was established; (2) investigate the representativeness of the first 1000 children and families who participated, compared to those who chose not to;...

Identifying Differences in Risk Factors for Depression and Anxiety in Pediatric Chronic Disease: A Matched Cross-Sectional Study of Youth with Lupus/Mixed Connective Tissue Disease and Their Peers with Diabetes

To investigate differences in risk factors for depression and anxiety, such as central nervous system involvement in systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD), by comparing youth with SLE/MCTD to peers with type 1 diabetes mellitus (T1D). We conducted a cross-sectional study of 50 outpatient pairs, ages 8 years and above, matching subjects with SLE/MCTD and T1D by sex and age group. We screened for depression, suicidal ideation, and anxiety using the Patient Health Questionnaire-9 and the Screen for Childhood Anxiety Related Emotional Disorders, respectively. We collected parent-reported mental health treatment data. We compared prevalence and treatment rates between subjects with SLE/MCTD and T1D, and identified disease-specific risk factors using logistic regression. Depression symptoms were present in 23%, suicidal ideation in 15%, and anxiety in 27% of participants. Compared with subjects with T1D, subjects with SLE/MCTD had lower adjusted rates of depression and suicidal ideation, yet poorer rates of mental health treatment (24% vs 53%). Non-White race/ethnicity and longer disease duration were independent risk factors for depression and suicidal ideation. Depression was associated with poor disease control in both groups, and anxiety with insulin pump use in subjects with T1D. Depression and anxiety are high and undertreated in youth with SLE/MCTD and T1D. Focusing on risk factors such as race/ethnicity and disease duration may improve their mental health care. Further study of central nervous system and other disease-related factors may identify targets for intervention.

The effects of nonsuicidal self-injury on parenting behaviors: a longitudinal analyses of the perspective of the parent.

BackgroundThe present study is the first to examine predictors and consequences of nonsuicidal self-injury (NSSI) in adolescence using parent-reported data in a longitudinal design. Across three time points, we examined the reciprocal effects of parent-reported parenting behaviors as they are related to adolescents’ NSSI.MethodsThe present study is a three-wave prospective study in a large sample of community adolescents and their parents. At time 1 (age 12), the sample consisted of 1396 adolescent reports and 1438 parent reports. Time 2 (age 13) included 827 adolescent and 936 parent reports. At time 3 (age 14), 754 adolescent and 790 parent reports were obtained. Engagement in NSSI (adolescent report) was determined by an affirmative response to the item ‘Have you intentionally injured yourself (e.g., cut, burn, scratch) this year, without the intent to die?’. Parental awareness of NSSI at age 13 and 14 was examined using a single-item screening question. Parenting behaviors were examined by the parent versions of the Parental Behavior Scale.ResultsResults showed that although NSSI was reported by 10 % of the adolescents, only 3 % of the parents were aware of the NSSI behaviors of their children. Cross-lagged analyses showed a reciprocal relationship between NSSI and parenting behaviors over time. We found a significant effect of both positive parenting and controlling parenting on the presence of NSSI at time 2. But vice versa NSSI also has an effect on parenting behaviors over time. Results showed that NSSI at time 1 has an impact on controlling parenting behaviors, namely punishment at time 2. NSSI at time 2 showed an impact on parent’s perception of positive parenting, parental rule setting, punishment and harsh punishment.ConclusionsThe present study examined predictors and consequences of NSSI in a longitudinal design, and emphasized the importance of examining reciprocal interactions between NSSI and parenting behaviors. Furthermore, it is the first study to examine parent-reported data in a longitudinal design and gives insight into parents’ perspectives.

Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001–2010

ObjectiveAccess to genetic counseling is increasingly important to guide families' and clinicians' decision making, yet there is limited research on accessibility and affordability of counseling for families with children with special health care needs (CSHCN). Our study's objectives were to measure changes in unmet need for genetic counseling for CSHCN from 2001 to 2010 and to characterize child, family, and health system factors associated with unmet need. MethodsWe used parent-reported data from the 2001, 2005–2006, and 2009–2010 National Survey of Children With Special Health Care Needs. We used a logistic regression model to measure the impact of survey year, child (sex, age, severity of health condition), family (primary language, household income, insurance, financial problems related to cost of CSHCN's health care), and health system factors (region, genetic counselors per capita, having a usual source of care) on access to genetic counseling. ResultsUnmet need for genetic counseling increased significantly in 2009–2010 compared to 2001 (odds ratio 1.89; 95% confidence interval [CI] 1.44–2.47). Being older (adjusted odds ratio [aOR] 1.04; 95% CI 1.02–1.06), having severe health limitations (aOR 1.72; 95% CI 1.16–2.58), being uninsured (aOR 3.56; 95% CI 2.16–5.87), and having family financial problems due to health care costs (aOR 1.90; 95% CI 1.52–2.38) were significantly associated with greater unmet need for genetic counseling. Having a usual source of care was associated with decreased unmet need (aOR 0.55; 95% CI 0.37–0.83). ConclusionsUnmet need for genetic counseling has increased over the past 12 years. Uninsurance and financial problems related to health care costs were the largest drivers of unmet need over time.

The influence of childhood asthma on puberty and height in Swedish adolescents.

Evidence relating to the effect of asthma on puberty or height is inconclusive. We aimed to examine whether the exposure of childhood asthma, including timing and phenotypes, and inhaled corticosteroid (ICS) use is either cross-sectionally or longitudinally associated with the outcomes of pubertal staging or height. This study employed data from a longitudinal, population-based cohort of Swedish children (born 1994-1996). At ages 1, 2, 4, 8, and 12years, parent-reported data on asthma and ICS use in the previous 12months were collected. At 8 and 12years, height was ascertained at a clinical visit, and child-reported, respectively. At 12years, children answered puberty-related questions. Retention through 12years was 82% (3366/4089). Participants without puberty data (n=620) were excluded, yielding a study population of 2746 (67%). Asthma at 8years, including timing of onset and phenotypes, was not statistically significantly associated with pubertal staging in adjusted models. Children with asthma averaged 0.93cm (95% CI 0.35-1.50) shorter than children without asthma. Children with asthma using ICS were 1.28 (95% CI 0.62-1.95) shorter than those with asthma without using ICS. We found no consistent association between asthma and pubertal staging. Children with asthma were shorter than those without asthma. Moreover, children with asthma using ICS were shorter than those not using ICS.

Built environment and active play among Washington DC metropolitan children: A protocol for a cross-sectional study.

BackgroundResearch has demonstrated that children who participate in active play are more likely to be physically active, thereby improving long-term health outcomes. Many adult studies have also shown that neighborhood built environments can encourage or discourage routine physical activity. Limited evidence has demonstrated that children who reside in neighborhoods with a built environment that is more inviting to active play exhibit lower overweight and obesity rates as well as an overall better state of well-being. This Built Environment and Active Play (BEAP) Study aims to develop a neighborhood playability rating system in the Washington, DC (DMV) area. Similar to walkability scores, these playability scores will estimate how affable a neighborhood is to active play. The BEAP Study will attempt to provide a broad view of factors influencing the level and type of active play among children.Methods/DesignUsing a cross-sectional design, the BEAP Study will collect data using a mail questionnaire administered to the parents and/or guardians of 2000 children aged 7-12 years residing in select DMV areas in October of 2014. Questionnaire data, including information on active play, home and neighborhood characteristics, parental perceptions, and sociodemographic characteristics will be merged through a geographic information system (GIS) with objective built environment measures in the participants’ neighborhoods. An ordered logit model will be used to regress an ordinal active play outcome on built environment exposure variables while adjusting for potential confounders. Upon the construction of the final model, predictor coefficients will be used as parameters in the scoring system to develop neighborhood playability scores.DiscussionThe BEAP Study intends to generate a neighborhood playability index by characterizing and quantifying children’s active play using parent-reported physical activity data in children, GIS data and built environment measures in participant neighborhoods. The BEAP Study will improve our understanding of the built environment and childhood playability relationship while also contributing to the body of evidence-based built environment and physical activity research.Electronic supplementary materialThe online version of this article (doi:10.1186/s13690-015-0070-3) contains supplementary material, which is available to authorized users.

Treatment of Attention Deficit/Hyperactivity Disorder among Children with Special Health Care Needs

To describe the parent-reported prevalence of treatments for attention deficit/hyperactivity disorder (ADHD) among a national sample of children with special health care needs (CSHCN), and assess the alignment of ADHD treatment with current American Academy of Pediatrics guidelines. Parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs allowed for weighted national and state-based prevalence estimates of medication, behavioral therapy, and dietary supplement use for ADHD treatment among CSHCN aged 4-17 years with current ADHD. National estimates were compared across demographic groups, ADHD severity, and comorbidities. Medication treatment by drug class was described. Of CSHCN with current ADHD, 74.0% had received medication treatment in the past week, 44.0% had received behavioral therapy in the past year, and 10.2% used dietary supplements for ADHD in the past year. Overall, 87.3% had received past week medication treatment or past year behavioral therapy (both, 30.7%; neither, 12.7%). Among preschool-aged CSHCN with ADHD, 25.4% received medication treatment alone, 31.9% received behavioral therapy alone, 21.2% received both treatments, and 21.4% received neither treatment. Central nervous system stimulants were the most common medication class (84.8%) among CSHCN with ADHD, followed by the selective norepinephrine reuptake inhibitor atomoxetine (8.4%). These estimates provide a benchmark of clinical practice for the period directly preceding issuance of the American Academy of Pediatrics' 2011 ADHD guidelines. Most children with ADHD received medication treatment or behavioral therapy; just under one-third received both. Multimodal treatment was most common for CSHCN with severe ADHD and those with comorbidities. Approximately one-half of preschoolers received behavioral therapy, the recommended first-line treatment for this age group.

Food‐induced anaphylaxis among a population of adolescents – Report from the BAMSE survey

Methods Parent-reported questionnaire data from 2-3 months, and 1, 2 and 16 years from a large birth cohort were used (N=3153). Immunoglobulin E to 14 common allergens were analysed at 4 (n=2283) and 16 years (n=2510). In a subset of 371 adolescents, 15 additional food allergen extracts or components were analysed at 16 years. Data on dispensed adrenaline autoinjectors and inhaled steroids were extracted from a national register. Severity of food reactions and asthma were defined. The incidence of anaphylaxis was analysed in association with early-life risk factors.

Parental report evidence for toddlers’ grammar and vocabulary in Bulgarian

This is the first study of a large sample of Bulgarian-speaking toddlers and their communicative development. A Bulgarian adaptation of the MacArthur–Bates Communicative Development Inventory Words and Sentences was used to obtain parent report data on 153 children between the ages of 20 and 30 months. Lexical and grammatical development were examined as a function of age, gender, and maternal education. While evidence was found for both lexical and grammatical developmental changes with age even in this age-restricted sample, gender had little effect on developmental levels, especially on the grammar components of the instrument. Maternal education was a significant predictor of children’s developmental achievements and there was considerable individual variability. The development of lexical and grammatical knowledge was found to be correlated significantly.

Long-term parental satisfaction with adenotonsillectomy: a population study.

ObjectiveThis study reports the presence of sleep-disordered breathing (SDB) symptoms among first graders. We evaluated the severity of symptoms and parental satisfaction in children who had undergone adenotonsillectomy (T&A) compared to children who never had T&A.MethodsA population-based, cross-sectional study was conducted. Parent-reported questionnaire data including age, weight, height, BMI, history of T&A, and SDB symptoms (snoring intensity, observed dyspneas, mouth breathing during sleep) were analyzed.ResultsOf 3580 eligible children, 2504 (69.9 %) returned questionnaires. Two hundred fifty-nine (10.3 %) children had a history of T&A. Within this group, 76 % of parents were still satisfied with their child’s outcome after surgery. The satisfaction rate decreased from 88.9 % in those who had surgery within 1 year to 71.3 % in those who had surgery ≥3 years prior. The mean values of intensity for all analyzed SDB symptoms on a five-point scale were significantly higher for children who had ever undergone T&A when compared to those who never underwent surgery [e.g., snoring (2.11 vs 1.87; P = 0.0004), dyspneas (1.64 vs 1.22; P < 0.0001), and mouth breathing during sleep (2.95 vs 2.58; P < 0.0001)]. For those who had undergone T&A, 24 % of caregivers were not satisfied with the surgical outcome and the symptom intensity was highest (snoring = 3.16, dyspneas = 2.20, and mouth breathing = 4.23) for these children.ConclusionsThe mean SDB symptom intensity was significantly higher in children who had undergone T&A when compared to those who had not. The elevated symptom intensity in those children whose caregivers were not satisfied after T&A suggests possible SDB recurrence and need for further evaluation.

The Structure of Psychopathology in Adolescence

This study aimed to replicate a study by Caspi and colleagues, which proposed that the structure of psychopathology is characterized by a general psychopathology factor, in addition to smaller internalizing and externalizing factors. Our study expanded the approach of the original by using continuous adolescent data and testing additional models, including both self- and parent-reported data, to bolster the robustness of the findings. Our findings indicate that the structure of psychopathology is best characterized by a model including a general factor, in addition to smaller internalizing and externalizing factors. These results emphasize the importance of this model for understanding the structure of psychopathology. Given the increasing emphasis on the importance of, and need for, replication, the overall evidence of a general factor seems rather robust.