Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention : results from the PediQUEST randomized controlled trial.

This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).

What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer

Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research. © Copyright 2014, Mary Ann Liebert, Inc. 2014.

Different clinical courses of children exposed to a single incident of psychological trauma: a 30-month prospective follow-up study

We investigated the distinct longitudinal trajectories of posttraumatic stress symptoms in a sample of 167 children, who witnessed death of two mothers of their schoolmates.

Making learning visible – parents perceptions of children's learning outdoors

Parents as partners in their children's learning is predicated by a notion of a mutual understanding of the learning as shared by educators. Documenting learning in early childhood education and care (ECE & C) settings has evolved from more traditional developmental approaches to include photographs, artefacts and social stories to make learning visible for parents. However, while educators are using these approaches to document learning in ECE & C settings, the shared understanding of the learning for parents is not always mutually understood. The paper presents a small-scale case study, which examined the way parents in one long day ECE & C service which had recently redeveloped an outdoor play area to bring in more natural affordances to support the children's learning and development. The paper reports on the perceptions of two parents with children attending this centre in how the educators were making visible the learning and development afforded the children through engaging in this newly designed space. The study found that while educators were using a range of documentation approaches, the parents had little shared understanding of their children as engaging in this space.

Evaluation of a comprehensive interactive training system for investigative interviewers of children

This article reports on the evaluation of an interactive interviewer training system with a large, heterogeneous sample of investigative interviewers of children. The system, delivered predominantly through computer-assisted learning activities, focused on how to elicit important evidential details from child witnesses in a narrative format. Two studies are reported, each adopting a pre-versus posttraining design. Study 1 examined the effect of the training on trainees' (N = 92) performance, using mock interviews where an actor played the role of the child in a highly controlled manner. Study 2 examined the effect of the training on field interviews (N = 156) conducted prior to and after the training. Five measures were analyzed: (a) proportion of interviewer question types, (b) proportion of desirable interviewer behaviors, (c) adherence to the interview protocol, (d) interview length, and (e) the quality of evidential information sought. Overall, the findings provide clear support for the utility of the training system. Irrespective of the type of interview or measure, adherence to best-practice interviewing increased from pre- to posttraining, with some evidence supporting sustained performance 12 months after there had been no intervening training or supervision. The implication is that there is now an evidence-based alternative to the traditional classroom-based training system for investigative interviewers. Suggestions for future research are also discussed.

Processes of change in the transition to adulthood

 A re-conceptualisation of the risk process was an outcome of this research, from which a positioning theory of crime was developed to explain more comprehensively the causal mechanisms by which risk effects are exerted and conduce to offending behaviour.

Screen-based behaviors of children and cardiovascular risk factors

OBJECTIVE: To determine whether the amount of time spent in screen-based behaviors (SBBs; television viewing, computer use, and playing electronic games) is independently associated with individual and clustered cardiovascular disease (CVD) risk factors among elementary school children. STUDY DESIGN: Baseline data were used from 264 children (age 7-10 years) participating in the Transform-Us! cluster-randomized controlled trial. Time (h/d) spent in SBBs was obtained using a parent proxy-report questionnaire. Anthropometrics, blood pressure (BP), and lipids were measured using standard techniques. A clustered CVD risk score was calculated as the average of the standardized values of the subcomponents (waist circumference [WC], systolic BP, diastolic BP, and lipids). RESULTS: After adjusting for sex, parent education, physical activity (accelerometry), diet, and WC (when adiposity was not the outcome), television viewing time was positively associated with body mass index z-score (P = .002), WC (P = .02), and systolic BP (P = .05). Electronic games was positively associated with low density lipoprotein levels (P = .05), and total screen-time was positively associated with body mass index (P = .02). CONCLUSIONS: Differential associations were observed between types of SBBs and CVD risk factors, indicating that not all SBBs are adversely associated with obesity and CVD risk. There is a need to differentiate between types of SBBs when evaluating the CVD risk associated with screen behaviors in children. TRIAL REGISTRATION: International Standard Randomized Controlled Trial: ISRCTN83725066; Australian New Zealand Clinical Trials Registry: ACTRN12609000715279.

The human rights needs and priorities of children with disability in Papua New Guinea

 A final report from the 'Voices of Pacific children with disability: Identifying the needs and priorities of children with disability in Vanuatu and Papua New Guinea' research project.

Gender congruity and social processes of leadership: is gender balance important?

This article presents the results of a study investigating the effects of gender balance on leadership processes at a workgroup and industry level. Leadership is conceptualized as a social process occurring between individuals, rather than as the behavior or attribute of a single individual. Transformational leadership processes were found less often in male-dominated industries. Furthermore, gender congruity effects were found, showing that gender balance between work teams and industries affects leadership processes between individuals. Leadership processes were reported most often in female-dominated work teams within female-dominated industries, but least often in female-dominated work teams within male-dominated industries. The implications for both leadership and gender research are discussed.

Rethinking creativity: three case studies of the social processes of creativity

Creativity and innovation are often seen as being important in terms of organisations, not only dealing with large amounts of change, but also being able to flourish in uncertain times. Yet, despite large amounts of creativity research, it continues to be a contested subject and fragmented field which leaves researchers without clear direction. Thus the approach to studying creativity needs to be rethought in order to develop new insights into the phenomenon. This research contributes to the debate on creativity by developing concepts around how creativity unfolds within a specific social context. It does this by approaching the study of creativity from a critical perspective and conducting a series of case studies into creativity in organisations. This research finds that, while the production of an artefact is a prerequisite, creativity is not an enduring feature of a given artefact. Rather, creativity exists when an artefact is labelled creative within a particular social system. In addition, as part of the interpretive research process, aspects of identity work emerged. Exploration of creativity as part of the process of identity work provides novel insight into creativity and a conceptual map which may be utilized as part of ongoing research into creativity. This research makes a significant contribution to the understanding of creativity by unpacking the processes of creativity, in three diverse organisational settings, and showing how creativity may be conceptualised as a contextually bound, socially constructed label which is underpinned by identity related motives.

Learning entry profiles of children with autism from multivariate treatment information using restricted boltzmann machines

Entry profiles can be generated before children with Autism Spectrum Disorders (ASD) begin to traverse an intervention program. They can help evaluate the progress of each child on the dedicated syllabus in addition to enabling narrowing down the best intervention course over time. However, the traits of ASD are expressed in different ways in every individual affected. The resulting spectrum nature of the disorder makes it challenging to discover profiles of children with ASD. Using data from 491 children, traversing the syllabus of a comprehensive intervention program on iPad called TOBY Playpad, we learn the entry profiles of the children based on their age, sex and performance on their first skills of the syllabus. Mixed-variate restricted Boltzmann machines allow us to integrate the heterogeneous data into one model making it a suitable technique. The data based discovery of entry profiles may assist in developing systems that can automatically suggest best suitable paths through the syllabus by clustering the children based on the characteristics they present at the beginning of the program. This may open the pathway for personalised intervention.