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.

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.

The relationship between divorce and the psychological well‐being of children with ADHD: differences in age, gender, and subtype

It is generally accepted that Attention‐Deficit/Hyperactivity Disorder (ADHD) results from a dysfunction of the central nervous system, which has led to a commonly held belief that environmental factors play little role in the behavioural problems of children identified as having ADHD. Therefore, the two studies reported in this article investigated the relationship between parental divorce and the psychological well‐being of children with ADHD. Subjects, aged 6 to 18 years, were diagnosed with either the inattentive or combined subtype of the disorder. Firstly, differences in children's behaviour between divorced and non‐divorced families were examined, and subtype, age, and gender differences were evaluated in terms of symptom severity and comorbid conditions. Secondly, parents' perceptions of the impact of their children's behaviour on marital status and family/parental functioning were examined. Parental divorce was associated with greater symptom severity, more externalizing/ internalizing behaviours, and poorer social functioning, but less with academic underachievement. Further, parental divorce was related to adjustment differences in ADHD subtypes, age, and gender. However, the correlation between behaviour problems of children with ADHD and marital/family dysfunction was weak. It may be concluded that parental divorce was associated with the psychological well‐being in children with ADHD, and there is some suggestion that ADHD should be viewed as a bio‐psychosocial disorder.

Behavioural differences between EEG-defined subgroups of children with Attention-Deficit/Hyperactivity Disorder

Objective: This study investigated the presence and nature of EEG clusters within a clinically-referred sample of children with Attention-Deficit/Hyperactivity Disorder (AD/HD), and whether behavioural differences exist between clusters.

Method: Participants were 155 boys with AD/HD and 109 age- and gender-matched controls. EEG was recorded during an eyes-closed resting condition and Fourier transformed to provide estimates for total power, and relative delta, theta, alpha, and beta. EEG data were grouped into 3 regions, and subjected to Cluster Analysis. Behavioural data for each cluster were compared against the remaining AD/HD subjects.

Results: Four EEG clusters were found. These were characterised by (a) elevated beta activity, (b) elevated theta with deficiencies of alpha and beta, (c) elevated slow wave with less fast wave activity, and (d) elevated alpha. An exploratory analysis of behavioural correlates with these EEG subtypes indicated the presence of interesting trends that need further investigation.

Conclusions: This study found that the AD/HD EEG profiles reported in past studies are robust and not substantially affected by the inclusion of children with other comorbid conditions. The observed group differences in behavioural profiles indicated that different patterns of EEG activity have importance in determining behaviour.

Significance: This is the first study to link behavioural profiles of children with AD/HD to specific EEG abnormalities.

Traumatic stress in parents of children with autism spectrum disorder.

A traumatic stress framework was identified as a valid way of conceptualising high levels of parenting stress in a subpopulation of parents raising a child with autism. An association between traumatic stress symptoms and child behaviours that posed a threat to child safety (e.g., elopement, aggression, self-injury) was found.

Tumor talk and child-well being: perceptions of 'good' and 'bad' news among parents of children with advanced cancer

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition.

OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives.

METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items.

RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life.

CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

Learning and teaching about disability

This thesis examined in-service education as a context for teachers and students to recognise and challenge ableism. It identified conditions that either promote consciousness of discrimination or maintain ableist beliefs and practices. The studies expose the role of ableism in constructing inequality, and highlight the change process individuals can experience.

Reconstructing the mosaic of inclusion for children with intellectual disabilities

This thesis proposes new thinking about educational inclusion for children with disabilities. It examines current policies and practices alongside experiences of teachers, parents, aides, students and children with intellectual disabilities. It elaborates the value of (inter)dependence as a guiding principle and identifies 'chinks of possibility' to drive inclusion efforts.

Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong

Although illnesses and diseases are thought to adversely affect quality of life (QoL), whether children who have physical disabilities (PD) from a young age adapt to the effect of developmental disabilities has rarely been investigated. This study attempted to assess the subjective wellbeing, and examine the correlation between objective and subjective QoL, of children with PD. Using a self-reported non-disease-specific questionnaire, the QoL of 72 young persons (13.5 ± 2.0 years) with PD was contrasted with those who do not have disabilities (n = 510; age-matched). MANOVA analyses revealed that the PD group had lower objective QoL score (63.0 ± 7.4 vs. 66.8 ± 5.7, p < 0.001) but the two groups were not significantly different in subjective QoL score (70.9 ± 11.4 vs. 69.6 ± 13.6, p = 0.466). No correlation was found between objective and subjective QoL in the PD group (r ranged from 0.06 to 0.19), while weak to medium correlations (r ranged from 0.03 to 0.41) were observed for the controls. The apparent detachment of subjective feeling and objective circumstances in the PD group may reflect adjustment to developmental disabilities.

Assessment of movement participation for children with developmental coordination disorders

The Caregiver Assessment of Movement Participation was developed to identify children of 5-10 years old for movement participation difficulties in home contexts. Its psychometric properties were investigated including its usefulness as a screening instrument using both classical test theory methods and Rasch analysis. Results confirmed its validity and reliability.

Health-related quality of life and metabolic control in children with type 1 diabetes : a prospective cohort study

OBJECTIVE—To assess change in health-related quality of life (HRQOL) in children with diabetes over 2 years and determine its relationship to change in metabolic control.

RESEARCH DESIGN AND METHODS—In 1998, parents of children aged 5–18 years attending a tertiary diabetes clinic reported their child’s HRQOL using the Child Health Questionnaire PF-50. Those aged 12–18 years also self-reported their HRQOL using the analogous Child Health Questionnaire CF-80. HbA_1c levels were recorded. In 2000, identical measures were collected for those who were aged ≤18 years and still attending the clinic.

RESULTS—Of 117 eligible subjects, 83 (71%) participated. Parents reported no significant difference in children’s HRQOL at baseline and follow-up. However, adolescents reported significant improvements on the Family Activities (P < 0.001), Bodily Pain (P = 0.04), and General Health Perceptions (P = 0.001) scales and worsening on the Behavior (P = 0.04) scale. HbA1c at baseline and follow-up were strongly correlated (r = 0.57). HbA_1c increased significantly (mean 7.8% in 1998 vs. 8.5% in 2000; P < 0.001), with lower baseline HbA_1c strongly predicting an increase in HbA_1c over the 2 years (r² = 0.25, P < 0.001). Lower parent-reported Physical Summary and adolescent-reported Physical Functioning scores at baseline also predicted increasing HbA_1c. Poorer parent-reported Psychosocial Summary scores were related to higher HbA_1c at both times but did not predict change in HbA_1c.

CONCLUSIONS—Changes in parent and adolescent reports of HRQOL differ. Better physical functioning may protect against deteriorating HbA_1c, at least in the medium term. While the HRQOL of children with diabetes does not appear to deteriorate over time, we should not be complacent, as it is consistently poorer than that of their healthy peers.

Psychometric properties of the quality of life questionnaire for children with CP

This paper describes the development and psychometric properties of a condition-specific quality of life instrument for children with cerebral palsy (CP QOL-Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL-Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self-report. For primary caregivers, 2-week test-retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL-Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self-report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php.

Early detection of emotional and behavioural problems in children with diabetes: the validity of the child health questionnaire as a screening instrument

Aims: To assess the validity of the Child Health Questionnaire (CHQ) as a screening tool for detecting 'at risk' emotional and behavioural  maladjustment in children with diabetes, using the Behaviour Assessment System for Children (BASC) as a gold standard measure. Methods: CHQ and BASC were administered to 103 parents of children with Type 1 diabetes, aged 7–12 years. Sub-scales of the two measures were compared using Pearson's bivariate correlations. CHQ sensitivity and specificity cut-points were optimized against the BASC borderline category using receiver operating characteristic curves. Results: The BASC Externalizing Problems scale correlated strongly with CHQ Behaviour, Global Behaviour, Mental Health, Family Activities and Family Cohesion scales (r-values −0.68, −0.54, −0.51, −0.59, and −0.42, respectively). BASC Internalizing Problems scale correlated strongly with CHQ Behaviour, Mental Health and Family Cohesion scales (r-values −0.40, −0.43 and −0.45, respectively). Using receiver operating characteristic curve analysis, the CHQ Mental Health scale most effectively identified children classified as borderline on the BASC Internalizing Problems scale (sensitivity 87%, specificity 78%), while the CHQ Global Behaviour scale most effectively identified children classified as borderline on the BASC Externalizing Problems scale (sensitivity 73%, specificity 82%). Conclusions: Significant correlations were seen between the CHQ Global Behaviour and Mental Health scales and the BASC Externalizing and Internalizing scales, respectively. Sequential use of the CHQ, as a screening tool, followed by an established mental health measure such as the BASC, may help identify children with diabetes 'at risk' for chronic maladjustment and poor health outcomes.

Efficacy of neuromuscular electrical stimulation in improving ankle kinetics during walking in children with cerebral palsy

Neuromuscular electrical stimulation (NMES) applied to the triceps surae muscle is claimed to be effective in improving gait in children with cerebral palsy. The main aim of this study was to determine the effect of NMES on the triceps surae muscle in improving the gait and function of children with cerebral palsy. Twelve children with spastic diplegia or hemiplegia were recruited and randomly assigned to the two experimental groups. The period of the study was 8 weeks (2-4-2 week design). The initial 2 weeks was the control period, in which usual treatment was given to both groups of patients with a pre- and post-treatment assessment. The middle 4 weeks was the experimental period, in which the Treadmill+NMES group received NMES plus treadmill walking training and the Treadmill group underwent treadmill walking training only. Assessment was performed at 2-week intervals. The final 2 weeks was the carryover period, in which treatment to be tested was stopped and reassessment performed again at the end of week 8. An additional treatment and post-treatment assessment were given at weeks 2, 4 and 6 to test for the immediate effect of treatment. Altogether, eight repeated measures with three-dimensional gait analysis and five clinical measurements using the gross motor function measure (GMFM) were performed. Kinetic changes in ankle moment quotient (AMQ) and ankle power quotient (APQ) were not significant either immediately or cumulatively in both groups. Improvement in trend was observed in both groups immediately but not cumulatively. Using the GMFM, functional changes were detected in standing (GMST, p < 0.001) and in walking (GMWK, p = 0.003) using a 'time' comparison. Significant interaction was also detected in GMWK using 'treatment by time' (p = 0.035). The difference between the two groups was not significant on 'treatment' comparison of both GMST and GMWK. Both groups showed improvement in GMST and GMWK cumulatively but there was no difference between the two groups. The effects in both groups could be carried over to 2 weeks after interventions stopped. Both the Treadmill+NMES and Treadmill groups showed improvement in functional outcomes. The trend in the changes of the GMFM score suggested that improvements were greater in the Treadmill+NMES group. There was also a trend showing some immediate improvement in AMQ and APQ.

Children with persistent conduct problems who dropout of treatment

Dropout of treatment is one of the key issues in outcome in a child and adolescent mental health service. We report two studies focusing on the treatment process and the dropout rate of children with persistent conduct problems presenting to a community mental health service, using a prospective design. The first study included 32 children and used a randomised controlled treatment design comparing a CBT approach with conjoint family therapy and an eclectic approach. The overall dropout rate was 36%. Dropout occurred significantly less frequently in the CBT group. The dropout group was associated with mothers who were younger and less educated, a poorer rating by the clinicians at the last meeting, parental dissatisfaction with the treatment service and perception that the treatment was less organised and having less behavioural tasks. In the second study we used a naturalistic follow-up design. Forty-six children were included. The overall dropout rate was 48%. Again, the children who defaulted were rated by clinicians as less likely to have improved and dropout was also  significantly associated with parental perception of a less organised treatment. In both studies dropout usually occurred after assessment and at the early phase of treatment.