Parenting children with neurodevelopmental disorders and/or behaviour problems.

BACKGROUND: Parenting behaviours influence child well-being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. OBJECTIVE: To examine and compare three parenting behaviours (positive interactions, consistency and ineffective parenting) among caregivers of children with neurodevelopmental disorders and/or externalizing behaviour problems, before and after accounting for child and family socio-demographic characteristics. METHODS: Participants (n= 14 226) were drawn from the National Longitudinal Survey of Children and Youth, a long-term study of Canadian children that follows their development and well-being from birth to early adulthood. Children (and their caregivers) were divided into four groups according to the presence of a neurodevelopmental disorder (NDD; n= 815), the presence of an externalizing behaviour problem (EBP; n= 1322), the presence of both conditions (BOTH; n= 452) or neither of these conditions (NEITHER; n= 11 376). RESULTS: Caregivers of children in the NEITHER group reported significantly higher positive interaction scores and lower ineffective parenting behaviours than caregivers of children in any of the other three groups. Caregivers of children in the EBP and BOTH groups reported similar levels of consistency, but significantly lower levels than caregivers of NDD or NEITHER children. These associations largely remained after accounting for child and family socio-demographic characteristics, with two exceptions: caregivers' reports of positive interactions were no longer significantly associated with child's NDD and BOTH conditions. CONCLUSIONS: Parenting children with multiple health conditions can be associated with less positive, less consistent and more ineffective parenting behaviours. Understanding the factors that are associated with the challenges of caring for these children may require additional research attention.

Glycerin suppositories used prophylactically in premature infants (supp): A pilot randomized controlled trial.

BACKGROUND: Glycerin suppositories are often used to facilitate meconium evacuation in premature infants. The evidence for this practice is inconclusive. The purpose of this study was to assess the feasibility of a multicenter randomized controlled trial on the effectiveness of this treatment strategy. STUDY DESIGN: We conducted an external pilot study for a multicenter randomized controlled trial of premature infants randomized to glycerin suppositories or placebo procedure. Participants were included if they were gestational age of 24 weeks 0 days to 31 weeks 6 days and/or birthweight of 500 to 1500 grams. We excluded infants with life-threatening congenital anomalies, contraindications to receiving suppositories, or signs of clinical instability. Outcomes included cost, recruitment, and treatment-related adverse events. RESULT: A total of 109 were screened, 79 were initially eligible, and 34 consented to participate. Four of these infants were excluded prior to randomization due to thrombocytopenia, 30 were randomized, and 26 reached full enteral feeds. Three infants (10%) experienced rectal bleeding 5 to 43 days after completing study treatments. An anal fissure was noted in two of these patients. There were no cases of rectal perforation but one infant assigned to active treatment developed necrotizing enterocolitis. CONCLUSIONS: Conducting a multicenter randomized controlled trial on the use of glycerin suppositories in premature infants is feasible. Minor modifications to the study protocol are needed to increase participant recruitment and simplify the administration of study treatments.

Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls.

OBJECTIVES: To compare the health status and health-related quality of life of teen-aged children who were extremely low birth weight (ELBW) with matched controls from the perspective of their parents. STUDY DESIGN: Geographically defined cohort; longitudinal follow-up; cross-sectional interviews. PARTICIPANTS: parents of 149/169 (88%) ELBW children between 12 and 16 years of age (including 41 children with neurosensory impairments) and 126/145 (87%) parents of term controls. Health status of the teenagers was classified according to the 6 attributes of the Health Utilities Index Mark 2, based on information obtained during parent interviews. Parents were asked to imagine themselves living in their own child's health state and 4 preselected hypothetical health states when providing directly measured standard gamble utility scores. RESULTS: Parents of ELBW children reported a higher frequency and more complex functional limitations than parents of controls for their own children's health status. Also, the mean utilities were lower (ELBW =.91 vs controls =. 97) and the variability in their scores was greater. There were no differences in the valuation of the hypothetical health states provided by parents of ELBW and control children. CONCLUSIONS: ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions. Nonetheless, parents of ELBW children, on average, rated the health-related quality of life of their children fairly high. Thus, differences in reported functional status are not necessarily associated with lower utility scores.

Baller-Gerold syndrome associated with congenital hydrocephalus.

We present a new case of the Baller-Gerold syndrome (BGS) in an infant with prenatally apparent severe hydrocephalus, growth retardation, and cardiac and limb abnormalities detected by ultrasound at 26 weeks of gestational age. Subsequent survival to term and neonatal examination confirmed an unsuspected diagnosis of BGS.

Issues in measuring change in motor function in children with cerebral palsy: a special communication.

Assessing clinical change in motor function in children with cerebral palsy is a complex measurement task. Whereas a variety of methods have been developed to quantify specific aspects of gross motor behavior (eg, gait analysis, electrophysiological tests, energy-consumption techniques), systematic measurement of overall gross motor function is a more difficult problem. This special communication reviews the structural and performance characteristics required of a well-developed, valid, and responsive clinically based evaluative measure. We discuss several recent approaches used to assess responsiveness and critically examine clinical measures used in randomized controlled trials of physical therapy for children with cerebral palsy. It is argued that the creation and validation of responsive evaluative measures is essential if we are to assess accurately whether our treatments do more good than harm.

Reliability of the Gross Motor Performance Measure.

BACKGROUND AND PURPOSE: The reporting of reliability coefficients and the method of their determination is expected of test developers. The purpose of this study was to estimate the interrater, intrarater, and test-retest reliability of the Gross Motor Performance Measure, a measure of quality of movement designed to accompany the Gross Motor Function Measure. SUBJECTS: Subjects were 28 children (25 with cerebral palsy, 2 nondisabled, 1 with head injury) between the ages of 1 and 10 years. METHODS: Reliability data were obtained from assessments of 19 therapists. RESULTS: Intraclass correlation coefficients for reliability varied from .92 to .96 for the total scores and from .84 to .94 for the five attribute scores. CONCLUSION AND DISCUSSION: When the Gross Motor Performance Measure was administered by therapists who are familiar with the Gross Motor Function Measure and had a 1-day training workshop, reliability of the total scores was above recommended minimums. Scores of single attributes were less reproducible.

Development of a quality-of-movement measure for children with cerebral palsy.

Development of a suitable measure of quality of movement, or gross motor performance, for children with cerebral palsy is a complex undertaking. A variety of conceptual, methodological, and practical issues inherent in such a project are discussed in this article. We report on the methodology used in the planning and construction of the Gross Motor Performance Measure. The measure has been developed by a multicenter, interdisciplinary group of therapists, methodologists, research staff, and international experts. Five attributes of gross motor performance have been defined, scaled, and operationalized. Results of content validity studies demonstrate that the measure has adequate completeness, clarity, and potential for evaluating change in quality of movement in children who have cerebral palsy. The measure is currently undergoing extensive testing to determine the reliability, validity, and responsiveness of the obtained scores. [Boyce WF, Gowland C, Hardy S, et al. Development of a quality-of-movement measure for children with cerebral palsy.

Measuring quality of movement in cerebral palsy: a review of instruments.

There is a lack of appropriate evaluation instruments in the area of quality of movement in cerebral palsy. Ten measures of quality of movement, or gross motor performance, published between 1965 and 1990, were reviewed according to established criteria. These criteria include the purpose of the measure, validity, reliability, responsiveness, range of items, and description of qualitative components. These measures provide a foundation for further instrument development in the area of quality of movement. [Boyce WF, Gowland C, Rosenbaum PL, et al. Measuring quality of movement in cerebral palsy: a review of instruments.

Training users in the gross motor function measure: methodological and practical issues.

BACKGROUND AND PURPOSE: The Gross Motor Function Measure (GMFM) is a criterion-referenced observational measure for assessing change in gross motor function for children with cerebral palsy (CP). The purposes of this report are to present data on the effects of training pediatric developmental therapists to administer and score the GMFM and to discuss some practical and methodological issues associated with training. SUBJECTS AND METHODS: A weighted kappa estimate pretraining and posttraining workshop was used to determine participants' agreement of scoring a videotaped GMFM assessment against experts' scoring of the same videotaped assessment. Several children with CP, representing a spectrum of ages, severities, and levels of function, were shown on the videotape. RESULTS: There was a significant improvement in agreement from a mean kappa of .58 to .82 (t = 15.38, df = 75, P < .001) for the first group and from .81 to .92 (t = 10.91, df = 72, P < .001) for the second group following training. CONCLUSION AND DISCUSSION: Although there are a number of advantages to using videotapes to train test users and to assess scoring reliability, this method does not evaluate participants' ability to administer the measure. Further work is needed to determine whether reliability is maintained in a clinical situation in which it is necessary to both administer and score the GMFM.

The Gross Motor Performance Measure: validity and responsiveness of a measure of quality of movement.

BACKGROUND AND PURPOSE: This article presents the results of a study to validate a measure of gross motor performance for its capacity to detect changes in the quality of movement in children with cerebral palsy aged 0 to 12 years. SUBJECTS AND METHODS: On two occasions, 4 to 6 months apart, physical therapists from three children's treatment centers assessed 106 children with cerebral palsy, 18 children who had sustained an acute head injury, and 29 nondisabled children. Validity was demonstrated by comparing changes on the measure across diagnoses, severity, and age groups. RESULTS: Several a priori hypotheses were supported; however, relationships with parent and therapist ratings were not clearly demonstrated. CONCLUSION AND DISCUSSION: The measure was found to be differentially responsive to changes in "stable" and "responsive" groups.

Validation of a model of gross motor function for children with cerebral palsy.

BACKGROUND AND PURPOSE: Development of gross motor function in children with cerebral palsy (CP) has not been documented. The purposes of this study were to examine a model of gross motor function in children with CP and to apply the model to construct gross motor function curves for each of the 5 levels of the Gross Motor Function Classification System (GMFCS). SUBJECTS: A stratified sample of 586 children with CP, 1 to 12 years of age, who reside in Ontario, Canada, and are known to rehabilitation centers participated. METHODS: Subjects were classified using the GMFCS, and gross motor function was measured with the Gross Motor Function Measure (GMFM). Four models were examined to construct curves that described the nonlinear relationship between age and gross motor function. RESULTS: The model in which both the limit parameter (maximum GMFM score) and the rate parameter (rate at which the maximum GMFM score is approached) vary for each GMFCS level explained 83% of the variation in GMFM scores. The predicted maximum GMFM scores differed among the 5 curves (level I=96.8, level II=89.3, level III=61.3, level IV=36.1, and level V=12.9). The rate at which children at level II approached their maximum GMFM score was slower than the rates for levels I and III. The correlation between GMFCS levels and GMFM scores was (.91. Logistic regression, used to estimate the probability that children with CP are able to achieve gross motor milestones based on their GMFM total scores, suggests that distinctions between GMFCS levels are clinically meaningful. CONCLUSION AND DISCUSSION: Classification of children with CP based on functional abilities and limitations is predictive of gross motor function, whereas age alone is a poor predictor. Evaluation of gross motor function of children with CP by comparison with children of the same age and GMFCS level has implications for decision making and interpretation of intervention outcomes.

Improved scaling of the gross motor function measure for children with cerebral palsy: evidence of reliability and validity.

BACKGROUND AND PURPOSE: This study examined the reliability, validity, and responsiveness to change of measurements obtained with a 66-item version of the Gross Motor Function Measure (GMFM-66) developed using Rasch analysis. SUBJECTS AND METHODS: The validity of measurements obtained with the GMFM-66 was assessed by examining the hierarchy of items and the GMFM-66 scores for different groups of children from a stratified random community-based sample of 537 children with cerebral palsy (CP). A subset of 228 children who had been reassessed at 12 months was used to test the hypothesis that children who are young (<5 years of age) and have "mild" CP will demonstrate greater change in GMFM-66 scores than children who are older ((5 years of age) and whose CP is more severe. Data from an additional 19 children with CP who were assessed twice, one week apart, were used to examine test-retest reliability. RESULTS: The overall changes in GMFM-66 scores over 12 months and a time ( severity ( age interaction supported our hypotheses. Test-retest reliability was high (intraclass correlation coefficient=.99). CONCLUSION AND DISCUSSION: This study demonstrated that the GMFM-66 has good psychometric properties. By providing a hierarchical structure and interval scaling, the GMFM-66 can provide a better understanding of motor development for children with CP than the 88 item GMFM and can improve the scoring and interpretation of data obtained with the GMFM.

Self-perceived social function among disabled children in regular classrooms.

Disabled children represent an important "at-risk" group for emotional and behavioral problems. This study determined how they assess their own social function in regular classrooms and compared them with their able-bodied peers. School principals identified 60 visibly disabled children who were integrated into regular classes for at least 50% of the time. A comparison group of 56 randomly selected, same-gender classmates was identified. Children completed the Perceived Competence Scale and a classroom sociometric scale. Parents and teachers were asked to rate each child's social function. Disabled children rated themselves lower on physical competence (mean = 2.53 vs 2.92, p = .002) but not on social or cognitive competence. However, disabled children had fewer friends and scored lower on the classroom sociometric measure than did their able-bodied classmates (mean = 2.06 vs 2.39, p = .01). There was no difference between disabled and control children when social function was assessed by parents or teachers. For all children two variables were significantly associated with the child's self-perceived social competence: the child's self-perceived physical competence (R2 = .27) and the peer sociometric rating (R2 = .13). Teacher perception (R2 = .35) and self-perception (R2 = .10) of social function were most strongly associated with the perception of peers. In both cases whether the child was disabled contributed little to the observed association. These findings support the importance of peers in the successful social function of children and suggest that teachers can have an impact on how children are perceived by other children.(ABSTRACT TRUNCATED AT 250 WORDS)

Parental attitudes toward children with handicaps: new perspectives with a new measure.

Research on attitudes toward the disabled generally has focused on adult perceptions of disabled adults, or children's attitudes toward peers. In view of changing social practices, such as mainstreaming in education and community integration of children with special needs, measures of adults' attitudes toward disabled children are needed. This paper reports on the development and validation of a 30-item self-report questionnaire assessing parental attitudes toward children with handicaps, and presents information concerning several determinants of parental attitudes. The measure is easy to use, reliable, and shows good evidence of construct validity. It detects differences among parents by gender, by parental education and occupational status, by cultural background of parents, by parental familiarity with a handicapped person, and by stimulus (physically disabled vs. mentally retarded child referent). Results are discussed in relation to determinants of parental attitudes toward handicaps. Potential applications of this measure for evaluation of teacher attitudes are suggested.

Improving attitudes toward the disabled: a randomized controlled trial of direct contact versus Kids-on-the-Block.

Social interaction between able-bodied and disabled children (as in a "buddy" program) is known to improve children's attitudes toward handicapped peers. This randomized-factorial-design study evaluated the relative impact of two interventions--a buddy program and the Kids-on-the-Block (KOB) puppet program--singly and in combination. Outcomes included measures of attitudes, familiarity with disabled schoolmates, self-esteem, and parental attitude. The buddy program appeared to be a successful intervention. The KOB program alone had no measurable impact on any outcomes, compared with control children. Surprisingly, the combination of KOB and buddy programs produced a significantly smaller impact than the buddy program alone. The combination was also marginally significantly poorer than the change experienced by the control group. These results are discussed in relation to the probable dissonance between real disabled children and the puppets. Suggestions are advanced for possible strategies to enhance interventions to teach social interactional skills to able-bodied children.

Low birth weight and home intervention strategies: preterm infants.

We investigated the effects of a 1-year home intervention on premature infants with low (less than 1500 g) and higher (1500-2000 g) birth weights. Infants from each weight condition were block randomly assigned to a control or to one of two treatment groups. One treatment group focused on the development of the infant; the other treatment group focused on the parent-infant interaction. The low birth weight infants obtained significantly lower Bayley mental and motor scores, and were more passive and less intense than the higher birth weight infants. However, the low birth weight infants and their parents were more responsive to the home intervention than were the higher birth weight infants, as demonstrated by changes in the Bayley mental scores and the Home Observation for Measurement of the Environment (HOME) inventory. These findings exemplify the reciprocal relationship between the child's characteristics and parental responding. The importance of selecting the most high-risk premature infants for early home intervention is outlined.

Contextual influences of parenting behaviors for children with neurodevelopmental disorders: results from a Canadian national survey.

PURPOSE: This population-based study examined correlates of three parenting behaviors (positive interactions, consistency, and ineffective parenting) that have been shown to differ in children with neurodevelopmental disorders (NDDs), with and without externalizing behavior problems (EBPs), as compared to children with neither condition. METHOD: The sample of children aged 4-11 (N = 14,226) was drawn from the Canadian National Longitudinal Survey of Children and Youth (NLSCY). Analyses examined the associations of child, parental, and social context factors with parenting behaviors, and whether they differed by child health group. RESULTS: Child age, family functioning, and social support variables were significant predictors of all three parenting behaviors. Significant interaction effects highlight the importance of the child's sex, birth order, and support received from community or social service professionals, and that these factors have differential impacts on parenting behaviors depending on the child's health group. CONCLUSIONS: Other Child, parent, and social context factors are associated with parenting behaviors but these associations vary by the child's health group. Parenting behaviors differ for children with NDDs with and without EBPs. These findings offer important implications for practice and research and point to the importance of considering multiple contexts of influence, as well as their interactions, in understanding differences in parenting behaviors.

Proposed motor development assessment protocol for epidemiological studies in children.

This paper proposes an approach to the implementation of a large-scale epidemiological study of child development. It addresses specifically how one might assess gross motor development longitudinally in a large population-based study of children, and recommends a three-phase process. Phase I, applied at key ages with the entire population, involves the use of parent-report screening tools that ask about specific age-appropriate motor skills, as well as any parental concerns about "quantity" or "quality" of their child's motor function and about any loss of motor function. In phase II, children who "fail" the screening phase (at any stage) are evaluated with specified developmental motor assessments. Those who "pass" revert to the screening stream, while those who "fail" continue to phase III. In this third component of the study, children are referred to experts in child development formally engaged in the study (including developmental paediatricians, paediatric neurologists and developmental therapists). These experts will use protocol-based evaluations to ascertain whether a child has a problem in development, what the problem might be from a diagnostic perspective, how "severe" the problem is, and what management services are or should be provided. It is argued that this is an efficient approach to the study of a population that would enable investigators to detect specific relatively common developmental motor disorders (in particular, cerebral palsy and developmental coordination disorder).

Who best to make the assessment? Professionals' and families' classifications of gross motor function in cerebral palsy are highly consistent.

AIM: To determine the reliability of family assessment for the Gross Motor Function Classification System (GMFCS) for children with cerebral palsy in the UK. METHODS: Families of a complete geographically defined population of children with cerebral palsy between 6 and 12 years old were identified from the 4Child epidemiological database. Postal surveys were conducted with the families and any of the child's health professionals that were nominated by the families. RESULTS: Families of 129/314 eligible children took part in the study (41%). The indices of agreement and reliability between families and professionals were also equivalent to those observed between the professionals (kappa = 0.5, ICC > or = 0.9). Reliability coefficients were higher when more of the professionals classified children using direct observation rather than only reviewing their clinical records. CONCLUSIONS: Despite excellent reliability, families and professionals did not always agree exactly on a child's GMFCS level. Classifications may differ due to children's varying performance in different environments, in which case families will almost certainly know their children's ability in a broader range of settings. The indices of reliability of family assessment for the GMFCS meet the recommended criteria for use with individuals and groups, indicating that the method is suitable for use in research studies and clinical practice.

Prevention of psychosocial problems in children with chronic illness.

Children with chronic illness and disability are at considerably increased risk of psychosocial problems, such as neurosis, attention deficit and poor adjustment to school. Health care professionals, especially primary care physicians, can do a great deal to prevent such problems in these children and their families. The approach outlined here is based on an understanding of the transactional model of development, in which the child interacts with--and to some extent creates--the social environment, and on a "noncategorical" concept in which common elements in chronic illness are recognized and emphasized. The physician's role is to inform the family of the child's condition as soon as possible, to offer hope, encouragement and guidance, to watch the child's development, to maintain a shared view of the child and family, and, if possible, to ensure continuity of care.