Parental factors associated with obesity in children with disability: a systematic review

The current literature on obesity in typically developing children shows that the family context, and specifically the way parents parent their children are major determinants of childhood obesity. The influence of these factors on obesity in children with disability, however, remains unclear. A systematic review of the literature was undertaken to identify the parental and parenting risk factors associated with obesity in children and adolescents with disability. Articles were identified through Medline, Academic Search Complete, PsycINFO, ProQuest, ISI, CINAHL, Cochrane and Scopus databases. There was no restriction on publication dates. The inclusion criteria were empirical papers that tested associations between parental and parenting risk factors and obesity in children and adolescents with intellectual and other developmental disabilities. Only 11 studies met the selection criteria and subsequently included in this review. Results suggest that obesity in children and adolescents with disability may be associated with socioeconomic status; parents' body mass index, perception and attitude towards their children's weight and physical activity; and levels of activity in both parents and children. Firm conclusions about these associations cannot be reached, however, due to mixed findings and methodological limitations of the studies. Recommendations for future research are provided.

Above and beyond: exploring outcomes and practices of Scope Southern Region Early Childhood Intervention Service for children with disability

This research project is an exploration of the early childhood intervention service (ECIS) provided by Scope Southern Region. The research seeks to examine the benefits and outcomes for families and children. In doing so, the project’s emphasis is on key practices such as family centred practice and transdisciplinary practice, while examining the enablers and barriers to providing positive benefits to families and children. The central question is whether the interventions are of assistance to families and children.

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.

Legitimising children’s evidence: Inclusive participatory research with children with disability

Achieving human rights is at the core of development outcomes, and the achievement of positive development outcomes increasingly relies on evidence-based policy and practice. However, people with disability have been routinely excluded from research evidence and knowledge production, both due to a lack of interest in their issues (Yeo and Moore, 2003) and through an over-reliance on research design that does not address barriers to their participation as research respondents (Wilson et al. 2013). Children with disability are even more marginalised from participation in knowledge production processes and have been passively subjected to research being conducted on or about them, rather than with them (Gray and Winter 2011a). This exclusion is even more evident in developing countries of the global south though with some rare exceptions (Kembhavi and Wirz, 2009; Singal, 2010; Wickenden and Kembhavi- Tam, 2014; Don et al, 2015; Nguyen et al, 2015). This paper reports on the ‘Voices of Pacific Children with Disability’ project (hereafter referred to as the Voices project) which, drawing on the broader field of child participatory research, developed a method for children with disability to competently provide evidence about their needs, aspirations and human rights priorities. Eighty-nine children with disability living in rural and urban areas of Vanuatu and Papua New Guinea (PNG) participated, using a suite of data collection ‘tools’ designed to support children to express their life priorities and human rights’ needs. In this paper we examine a sub-set of this data related to children’s future priorities, the primary one being employment, and explore the utility of such evidence for governments, NGOs and other stakeholders, in shaping policy and service delivery in line with the rights of children with disability. Such data is important when working in an evidence informed way as often these organisations have limited data on the needs and values of the groups they serve.

Spreading the word: using film to share research findings and knowledge about children with disabilities in Vanuatu and Papua New Guinea

While there is increasing international interest in disability inclusive development, people with disability largely remain ‘unseen, unheard and uncounted’ (UN ESCAP 2012:1). Children with disability, particularly, remain excluded from research informing development, and there is a paucity of information that is drawn directly from the self-report of children with disability living in developing countries. This exclusion occurs across all stages of research, including access to research findings. When child research is conducted in such countries, to gain further evidence to support disability inclusive development and advance human rights, researchers must question how findings will be reported back to participants and their communities, and seek a method that is both accessible and culturally relevant. This paper reports on the Voices of Pacific children with disability research project about the human rights of children with disability in Vanuatu and Papua New Guinea (PNG), and focuses on film as a dissemination method. Project researchers developed methods to enhance the participation of children with diverse disabilities as informants, and drew upon community development principles to disseminate research findings via film; a method that resonated with the aural and visual story telling traditions of participants.This medium also included accessibility features that have been utilised by local and international audiences.

Social adaptation of children with mild intellectual disability : effects of partial integration within primary school classes

Examined the social adaptation of 32 children in grades 3–6 with mild intellectual disability: 13 Ss were partially integrated into regular primary school classes and 19 Ss were full-time in separate classes. Sociometric status was assessed using best friend and play rating measures. Consistent with previous research, children with intellectual disability were less socially accepted than were a matched group of 32 children with no learning disabilities. Children in partially integrated classes received more play nominations than those in separate classes, but had no greater acceptance as a best friend. On teachers' reports, disabled children had higher levels of inappropriate social behaviours, but there was no significant difference in appropriate behaviours. Self-assessments by integrated children were more negative than those by children in separate classes, and their peer-relationship satisfaction was lower. Ratings by disabled children of their satisfaction with peer relationships were associated with ratings of appropriate social skills by themselves and their teachers, and with self-ratings of negative behaviour. The study confirmed that partial integration can have negative consequences for children with an intellectual disability.

The assessment of mental health in children with intellectual disability

Aim: Individuals with intellectual disability (ID) have higher rates of mental health problems than the general population. Assessment tends to rely heavily on self-report, but persons with ID often have difficulties in identifying and describing their own thoughts and feelings. Measures that are psychometrically sound with typically developing populations may not be as robust in samples with ID. The aim of the current study was to examine a range of self-report measures for assessing the mental health of children with ID, and to consider the appropriateness of minor modifications to those instruments. Method: The participants were 58 children with ID (mean 11.7 years) attending Year 6 in mainstream primary schools. At the first time point they completed four established measures of depression, anxiety and mood. Minor modifications were made to wording and format at re-administration six months later. Results: Internal consistency varied considerably across measures. Modifications resulted in small or no improvements, but the results were relatively consistent over time and across similar measures. Some gender differences were evident. Conclusions: The findings confirm the difficulties that children with ID may have when responding to self-report measures of mental health, and suggest that care should be taken in choice of instruments. While modifications can produce small improvements, it is clear that more robust measures of mental health are needed for persons with ID.

Resiliency profiles of children with intellectual disability and their typically developing peers

Intellectual disability (ID) is associated with a range of risk factors that make children more vulnerable to adverse developmental outcomes including mental health problems. Nevertheless, some children with ID do much better than others, presumably because of the presence of protective factors that increase their resilience. The current study compared resiliency profiles of children with ID (n = 115, mean age 11.9 years) and their typically developing peers (n = 106, mean age 11.8 years) using the Resiliency Scales for Children and Adolescents (Prince-Embury, 2007) and the Healthy Kids Resilience Assessment (Constantine, Bernard & Diaz, 1999). In many respects children with ID and their typically developing peers reported similar levels of the protective factors that are associated with resilience. However, the children with ID reported higher levels of emotional sensitivity and lower tolerance, as well as fewer future goals. Compared with typically developing children, those with ID reported more support at school and less support within their communities. These findings have important implications for interventions that aim to promote positive developmental outcomes and to prevent the adverse sequelae that have been associated with low intelligence.

Factor analysis of the Self Report Version of the Strengths and Difficulties Questionnaire in a sample of children with intellectual disability

The rate of emotional and behavioral disturbance in children with intellectual disability (ID) is up to four times higher than that of their typically developing peers. It is important to identify these difficulties in children with ID as early as possible to prevent the chronic co-morbidity of ID and psychopathology. Children with ID have traditionally been assessed via proxy reporting, but appropriate and psychometrically rigorous instruments are needed so that children can report on their own emotions and behaviors. In this study, the factor structure of the self-report version of the Strengths and Difficulties Questionnaire (SDQ) was examined in a population of 128 children with ID (mean age = 12 years). Exploratory and Confirmatory Factor Analysis showed a three factor model (comprising Positive Relationships, Negative Behavior and Emotional Competence) to be a better measure than the original five factor SDQ model in this population.

Postdiagnosis personal growth in an Australian population of parents raising children with developmental disability

Background Parenting a child with a developmental disability presents a variety of long-term physical and emotional challenges. When exploring parent wellbeing, the disability field is dominated by a deficit model despite parents reportedly demonstrating coping and resilience. The current study is embedded in a salutogenic theory (Antonovsky, 1979) and explores the potential for parents of children diagnosed with a developmental disability to undergo positive changes. Method Participants were 6 fathers and 27 mothers who completed measures of distress and posttraumatic growth. Results Compared with a number of other Australian samples, participants reported significantly higher levels of posttraumatic growth. Reports of growth did not negate reports of distress. Results also indicated that constructs of distress and growth were independent. Conclusions The research has important implications for disability support services, reminding providers to be cognisant of the potential for growth, as well as distress, thereby permitting an atmosphere conducive to exploring such outcomes.

Promoting resilience in children with intellectual disability : a randomized controlled trial in Australian schools

Children with intellectual disability are more vulnerable to adverse developmental outcomes because of the lifelong risks associated with cognitive impairment. Difficulties with learning and adaptive behaviour inevitably produce considerable personal, social and economic disadvantage. Of concern is consistent evidence that psychiatric disorders affect a substantial proportion of people with intellectual disability. The estimated prevalence rate of between 35 and 49 % is three times that found in the general population (Wallander, Dekker, & Koot, 2006). Until recently, mental illness has been relatively neglected for people with intellectual disability, especially in relation to prevention or early detection (Kolaitis, 2008) and most research to date has been descriptive rather than focused on intervention (Bouras, 2013). Yet a considerable body of evidence demonstrates that efficacious interventions do exist for preventing psychopathology and enhancing resilience in typically developing children and adolescents (see Mallin, Walker, & Levin, 2013 for a review). In order to prevent the high comorbidity of intellectual disability and psychopathology, there is a compelling need for evidence-based practices that promote the resilience of individuals with intellectual disability (Matson, Terlonge, & Minshawi, 2008). In this chapter, we describe a randomized controlled trial of an intervention that was designed to enhance the resilience of a group of children with mild intellectual disability as they prepared to make the transition to high school. We report results from our evaluation of this intervention, and reflect on the difficulties of providing successful interventions for children whose lives are complicated not only by intellectual disability, but also by a range of contextual disadvantages.

Mastery motivation in children with intellectual disability : Is there evidence for a Down syndrome behavioural phenotype?

The main purpose of the current study was to provide empirical evidence to support or refute assumptions of phenotypic deficits in motivation for children with Down syndrome. Children with moderate intellectual disability associated with etiologies other than Down syndrome were recruited in an extension of a previous study that involved children with Down syndrome and typically developing children. The participants were 29 children with moderate intellectual disability and 33 children with Down syndrome who were matched on mental age to 33 typically developing children, aged 3 to 8 years. Mastery motivation was assessed on task measures of curiosity, preference for challenge, and persistence, as well as parental reports. There were no significant group differences on the mastery motivation tasks. Parental ratings of mastery motivation differed, with typically developing children generally being rated more highly than each of the disability groups. The view that motivational deficits are part of the Down syndrome behavioural phenotype was not supported.

The development of an intervention to promote the capacity to wait in children with intellectual disability

Aim: Individuals with intellectual disability (ID) often have difficulty with waiting, an important aspect of everyday life. Successful waiting require cognitive, emotional and behavioural self-regulation, and is an essential element in the capacity to delay gratification. Method: We developed an intervention to provide parents with the knowledge and strategies to promote their child’s capacity to wait. The intervention was grounded in previous work about the skills underpinning successful waiting, such as goal-setting, understanding time, and managing frustration. Eleven parents of children with ID (mean CA 9.4 years; mean MA 47 months) participated in an intervention trial. Following pre-testing of their child’s capacity to wait and delay gratification, parents attended a 1 day workshop that was followed by monthly phone discussions with the researchers to monitor progress and provide advice. Post-testing was undertaken 1 year later. Results: Compared with a wait-listed control group, children whose parents had completed the intervention displayed significant improvements in their capacity to wait on a delay of gratification task. Parents reported that their child had become more successful in everyday waiting situations. Conclusion: The results of this pilot study are promising and pave the way for larger-scale interventions to improve self-regulatory skills in people with ID.