Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol.

INTRODUCTION: Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of the newborn for a number of serious and life-limiting conditions. In Canada, newborn screening programmes fall under provincial and territorial jurisdiction with no federal coordination. To date, we know very little about the underlying beliefs around different consent practices or how terminology is interpreted by different individuals. Differences in attitudes may have important healthcare consequences. This study will provide empirical data comparing stakeholder opinions on their understanding of consent-related terminology, the perceived applicability of different consent approaches to newborn screening, and the requirements of these different approaches. METHODS AND ANALYSIS: Parents, healthcare professionals and policymakers will be recruited in the provinces of Ontario and Newfoundland and Labrador. Parents will be identified through records held by each provincial screening programme. Healthcare professionals will be purposively sampled on the basis of engagement with newborn screening. Within each province we will identify policymakers who have policy analysis or advisory responsibilities relating to NBS. Data collection will be by qualitative interviews. We will conduct 20 interviews with parents of young children, 10 interviews with key healthcare professionals across the range of appropriate specialties and 10 with policymakers at each site (40 per site, total, N=80). The examination of the transcripts will follow a thematic analysis approach. Recruitment started in June 2014 and is expected to be complete by June 2015. ETHICS AND DISSEMINATION: This study received ethics approval from the Ottawa Health Science Network Research Ethics Board, the Children's Hospital of Eastern Ontario Research Ethics Board (both Ontario), and the Health Research Ethics Authority (Newfoundland and Labrador). RESULTS: These will be reported in peer-reviewed publications and conference presentations. The results will have specific application to the development of parent education materials for newborn screening.

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.

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.

Impact of CONSORT extension for cluster randomised trials on quality of reporting and study methodology: review of random sample of 300 trials, 2000-8.

OBJECTIVE: To assess the impact of the 2004 extension of the CONSORT guidelines on the reporting and methodological quality of cluster randomised trials. DESIGN: Methodological review of 300 randomly sampled cluster randomised trials. Two reviewers independently abstracted 14 criteria related to quality of reporting and four methodological criteria specific to cluster randomised trials. We compared manuscripts published before CONSORT (2000-4) with those published after CONSORT (2005-8). We also investigated differences by journal impact factor, type of journal, and trial setting. DATA SOURCES: A validated Medline search strategy. Eligibility criteria for selecting studies Cluster randomised trials published in English language journals, 2000-8. RESULTS: There were significant improvements in five of 14 reporting criteria: identification as cluster randomised; justification for cluster randomisation; reporting whether outcome assessments were blind; reporting the number of clusters randomised; and reporting the number of clusters lost to follow-up. No significant improvements were found in adherence to methodological criteria. Trials conducted in clinical rather than non-clinical settings and studies published in medical journals with higher impact factor or general medical journals were more likely to adhere to recommended reporting and methodological criteria overall, but there was no evidence that improvements after publication of the CONSORT extension for cluster trials were more likely in trials conducted in clinical settings nor in trials published in either general medical journals or in higher impact factor journals. CONCLUSION: The quality of reporting of cluster randomised trials improved in only a few aspects since the publication of the extension of CONSORT for cluster randomised trials, and no improvements at all were observed in essential methodological features. Overall, the adherence to reporting and methodological guidelines for cluster randomised trials remains suboptimal, and further efforts are needed to improve both reporting and methodology.

Visual masking plays two roles in the attentional blink.

When two targets are displayed in rapid visual sequence and masked by trailing patterns, identification accuracy is nearly perfect for the first target but follows a U-shaped pattern over temporal lag for the second target. Three experiments examined the role of visual masking in this attentional blink. Experiment 1 compared integration and interruption masks for both targets. Although either mask was effective in producing the blink when applied to the first target, only the interruption mask was effective when applied to the second target. Experiment 2 showed that integration masking of the second target was ineffective over a wide range of accuracy levels. Combining the two forms of masking in Experiment 3 confirmed the dissociation: A combined mask and only a main effect on accuracy for the first target, whereas it produced a qualitatively different pattern over temporal lag for the second target. These results suggest that representations of the target are substituted in consciousness by that of the interruption mask when visual attention is preoccupied.

The duration of a brief event in the mind's eye.

A new illusion of perceived duration associated with focused spatial attention is reported. Brief flashes in attended locations were perceived to last longer than the same flashes in unattended locations. That illusion was shown to be completely independent of another illusion concerning the perceived onset of a flash, ruling out the possibility that the effect on perceived duration is derivative of a comparison between perceived onset and offset. The illusion also occurred when the event duration was composed of a temporal gap rather than a brief flash, ruling out low-level visible persistence as a basis for the illusion. Taken together, the results point to cortical connections from higher brain centers' both speeding and prolonging the visual signals occurring in lower sensory regions. Those temporal consequences could easily subserve many of the perceptual benefits ascribed to attention for spatial and intensive properties.

Representational momentum and memory for luminance.

Representational momentum (RM) is a distortion in memory for the final position of an object in the direction implied by a set of discrete inducing displays (J.J. Freyd, 1987; J.J. Freyd & R.A. Finke, 1984). The effect has been shown under a wide variety of circumstances, which has led to assertions that it is a general enough phenomenon to extend to virtually any dimension of change. It is reported here that decisions about luminance seem not to be subject to RM. Instead, a robust effect in the direction opposite to that predicted by the RM hypothesis was observed. It is argued that RM might be more usefully considered limited to dimensions of change correlated with motion in the real world, and some initial hypotheses as to the nature of the mechanism underlying this new luminance effect are presented.

Inhibitory mechanisms of attention in identification and localization tasks: time course and disruption.

It has been proposed that 1 component of the mechanism of visual selective attention is active inhibition of distracting information. A series of studies examines the time course of inhibition and the possible interfering effects of other task demands. Results demonstrate that inhibition can last at least 7 s after selection processes and that it is unaffected by predictable, unrelated intervening events. However, intervening events that are less predictable, or are the same as the inhibited stimulus, disrupt inhibition. Such results motivate a reconsideration of the previous view of distractor inhibition as a transient, fragile phenomenon.

Selection of moving and static objects for the control of spatially directed action.

Research studying visual selective attention has largely examined filtering tasks in which stationary targets are selected from stationary distractors by a physical cue such as location and identity is the reported attribute. During many interactions with the visual environment however, target stimuli are selected by what they are, whereas action is controlled by where the stimulus is located. This study demonstrates that the interference and negative priming effects observed in standard filtering tasks, which suggest that distractors are analyzed and subsequently inhibited during selection, are also observed when targets are selected on the basis of identity and spatial location is the reported attribute. Furthermore, experimental results suggest that inhibition associated with distracting objects in this new task is object-centered, so that if the object is moving through space, inhibition moves with it.

Mechanisms of attention: a developmental study.

A model of selective attention is proposed which contains a number of properties. First, stimuli which are irrelevant to the subjects' task can be analyzed to semantic levels automatically, and such stimuli can produce intrusion/interference effects. Second, two mechanisms by which selection is achieved are habituation to, and inhibition of, these irrelevant stimuli. A series of studies demonstrates that both the ability to process automatically irrelevant stimuli and the habituation mechanisms of attention are observable by Grade 2, whereas the inhibitory mechanism is not always evident at this stage. It is suggested that the greater distractability of children in certain situations may be due in part to the underutilization of this inhibitory mechanism. We further propose that children may be able to employ inhibitory mechanisms in more familiar perceptual-motor tasks.